NHS Continuing Healthcare

NHS Continuing Care is funding provided by the NHS for people in full time care

Elderly people and NHS Continuing HealthcareIt’s for people who are assessed as having a ‘Primary Health Need’.

NHS Continuing Healthcare is also known as ‘Continuing Care’ or ‘Fully Funded NHS Care’.

Over the last 3-4 years we have been contacted by over 1,000 families needing help navigating the Continuing Healthcare funding system. Many have never been told about NHS funding by the health and social care authorities, and yet the NHS has a duty to promote this funding.

Listen to the BBC’s File on 4 programme: ‘Continuing Healthcare – The Secret Fund’, broadcast on 18/11/14. It highlights some of the problems families experience in the funding assessment process.

What does NHS Continuing Care cover?

It covers 100% of care fees for people who need full-time care primarily for health reasons, i.e. they have a Primary Health Need. It’s available whether you’re in a care home, in your own home, in a hospice or somewhere else.

  • If you’re in a care home, NHS Continuing Healthcare covers all care fees, including the costs of accommodation.
  • If you’re receiving full time care at home, Continuing Healthcare covers all nursing care plus personal care (bathing, dressing, etc.) plus any household costs directly related to care needs.

It doesn’t matter whether you’re in a residential home or a nursing home, the same rules apply: It’s about your health needs first, not where you live or how much money you have.

The landmark Coughlan case, reinforced the difference between health needs and social care needs.

Should you be assessed?

If you have healthcare needs and you need full-time care, you should have a Continuing Healthcare assessment. NHS guidelines and the Standing Rules Regulations require local Clinical Commissioning Groups (formerly Primary Care Trusts) to assess anyone who appears potentially eligible for Continuing Healthcare.

However, many people find that they are assessed first by the local authority, to test their financial means.

If your local authority does a means test before you’ve been assessed for NHS Continuing Care, it can put the local authority in a potential unlawful position. Why? Because your care needs could be beyond the local authority’s legal remit for providing care, and you could end up wrongly paying. A Continuing Healthcare assessment needs to be carried out to clarify who is actually responsible for paying.

Many people with health and nursing care needs are automatically means tested first, and end up paying, and yet families report there will often have been no assessment for Continuing Healthcare. It is this that has led to thousands of retrospective claims for Continuing Healthcare being made.

What is the ‘National Framework’?

Prior to 2007 each Health Authority had its own eligibility criteria for Continuing Healthcare. The result was a ‘postcode lottery’, great confusion and thousands of complaints to the Health Service Ombudsman.

In 2007 the Department of Health introduced a new ‘National Framework’ for England, with the aim of providing a consistent single assessment process for everyone. Most (but not all) of these National Framework guidelines apply to Wales as well.

This National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care defines NHS Continuing Healthcare as follows:

“‘NHS continuing healthcare means a package of ongoing care that is arranged and funded solely by the NHS where the individual has been found to have a ‘primary health need’… Such care is provided to an individual aged 18 or over to meet needs that have arisen as a result of disability, accident or illness. …Eligibility for NHS continuing healthcare places no limits on the settings in which the package of support can be offered or on the type of service delivery.”

Get assessed for Continuing Care.

Read these frequently asked questions about NHS Continuing Healthcare – we’ve included lots of tips to help you.

How to get through a Continuing Healthcare assessment

Care To Be Different was set up by Angela Sherman, after she won a tortuous four-year battle to secure Continuing Healthcare funding for both of her parents. Since then she has had personal contact with over 900 families needing help understanding Continuing Healthcare. Almost all of those families had either not been told about NHS funding when a relative first needed nursing care and/or faced obstacles in the assessment process.Angela Sherman, Director, Care To Be Different

ctbd-books-pay-for-care-newAngela has written a book, How To Get The NHS To Pay For Care, to help families get through Continuing Healthcare assessments and argue their case. It shows you what to do – and what not to do – and it can save you losing everything in care fees. It’s easy to follow and cuts through the confusion to show you step by step how things work.

“We were so grateful to find a clear and helpful guide to the process at a time when my mum was so vulnerable. It gave our family the confidence to successfully fight for NHS funding. The NHS should be ashamed of the way families/carers are treated: incorrect records, withholding information, conflicting information… I felt I must write to thank you for the information.” Rachel

“We have heard today that my mother-in-law is to receive NHS Continuing Care funding. We could not have done it without your book and website. Thank you so much.” Ian Johnson

Read more about this e-book

277 Comments

  1. David sherriff 10 months ago

    Can I claim PIP if I am getting NHS continuing care? I am at home not in a nursing home.

    • Author
      Angela Sherman 10 months ago
      • Sharon kettle 5 months ago

        My dad has just moved into a nursing home with a terminal illness, he is receiving nhs continuing healthcare funding, but we have been told the local authority puts a cap on the amount they pay, is this correct as my understanding was 100% of the nursing fees would be paid.

        • Chris-G 5 months ago

          Local Authority does not, (should not be paying), pay for any care when NHS CHC is being paid. There is a scenario that I dispute the validity of and that is the 50/50 split of care needs that enables the council to recharge for much of the money they pay out, whilst the NHS cannot do that. Perhaps that is what is occurring. It is usual for the NHS to have contracted rates for nursing homes. Perhaps that is what is meant. If so then choosing the most expensive might be a problem There again, if a resident is self paying and then the NHS takes over, there are cases that prevented the NHS moving the patients to the cheaper homes and caused them to pay for the expensive ones.

    • Judy 10 months ago

      The answer to this is yes. PIP is to do with your disability and how it affects your everyday living. NHS Continuing Healthcare is to do with the NHS continuing to meet your healthcare costs wherever you might be.

    • Christine 6 months ago

      Does the assessor have to show all the health professionals reports to the carer at the assessment meeting?

    • Rae 6 months ago

      Yes you can, if you are in your own home!

    • My Husband gets DLA + Continuing Health Care.

    • Kevin 2 months ago

      Yes, you can – Definitely.
      We do.

    • Kevin 2 weeks ago

      Absolutely you can – We do.
      You can also claim things like attendance allowance and carers allowance.

      You can complete your PIP Application over the telephone or online.

      If you get turned down or offered very low rates – appeal.

      Get assistance form CAB if you don’t feel able.

      Most appeals are successful.

      Good luck

  2. Jacqueline Ringrose 10 months ago

    My mother was placed in a care home by the Social Services, and as such she has to pay all of her pension to stay there. I am, and was not aware of the Hospital funding No PaY Scheme. Is it possible to transfer to it? Mother nor I were given a choice of Home. She has Dementia, and I was put onto a “vulnerable” list, and left there. I flounder along surrounded by brick walls, and now have no say in her care at all.

    • Author
      Angela Sherman 10 months ago

      Jacqueline – Remember that it doesn’t matter whether or not your mother was placed in the care home by Social Services. That does not affect her entitlement to Continuing Healthcare (CHC). The only thing that matters when looking at a person’s eligibility for CHC is their health and care needs. Their money, the type of home, who placed them there, etc – these are all irrelevant. If you mean Continuing Healthcare when you say ‘hospital funding no pay scheme’, then yes, your mother should be assessed for this to determine whether or not she does have to pay for her care.

      • jo 6 months ago

        My mother has just been assessed as being eligible for CHC. However, i was told the health authority gives a set amount depending if a person has one or two severes or so many highs. I have been told it might be around £500 but as she needs nursing dementia I have not neen able to find anywhere under £850 and as she neefs 1:1 care most of the time it could be in excess of £2000 a week the social worker told me my mum can use her pension to top up and if or when the CHC will be withdrawn in three months time I will have to pay the top up. Surely if she needs high care the CHC should be covering the full amount? I had not heard of different rates being paid out for diffetent scores regardless of what nursing homes are charging to meet the assessed need. Can you help? Thanks.

        • Author
          Angela Sherman 5 months ago

          Hi Jo – there’s no ‘grading’ of CHC. It must instead cover all assessed care needs, whatever they are. I’ve heard of cases before where assessors try to persuade a family that CHC payments are linked to the level of scores in the DST – and it’s not true. In addition, the social worker doesn’t know what he/she is talking about – CHC cannot be topped up; it’s only local authority funding that can be topped up. A care home should not ask you for CHC top ups either.

          • Jane Taylor 1 month ago

            My husband aged only 57 has picks disease, a rare Dementia and was put in a care home in February. I have just had CHC decision saying they’ll only pay 50% despite having more than two severes. Fees are £1k a week and it’s not 5* but he is potentially aggressive and incontinent sometimes. I have children still at home and now unemployed as I had to give my job up to care for him. How can they expect me to find that sort of money? I’m living off beleaguered savings as his pension only just covers bills. Everyone says surely you won’t have to pay but CHC and social services seem to think I do!!! What can I do?

  3. claire 10 months ago

    Can you please tell if continual care package covers for full time care for a person in there own home I.e throughout the night also?

    • P J Nichols 10 months ago

      See my note above. My husband’s package of Continuing Healthcare allows 4 visits from carers daily. Apparently there is a facility for overnight care but this means the carer requires overnight accommodation. Otherwise I assume it means a residential nursing home.

    • Author
      Angela Sherman 9 months ago

      Yes, Continuing Healthcare funding is not dependent on where the care is provided; it can be in a care home or in a person’s own home.

      • Sandra Totterdell 4 days ago

        I have been awarded Continuing Healthcare (CHC) but I’ve been told that in my area the CCG have devolved the process of writing the care plan to the local authority social services. The plan does not meet my complex needs and social care say CHC does not pay for mileage for carers to do my shopping or for mileage or accessible taxi transport to enable me to go out. Also recently they refused to fund a carer to stay with me overnight for 2 nights to enable my husband to visit his family. They wanted instead to put me in care home. Can they do this?

    • My Husband needs round the clock care. His CHC covers it all in our own home.

      • Allison 4 months ago

        My mums recently been diagnosed with MND, in hospital after a bad fall and now can’t walk, the doctors told me yesterday that they’re looking to put her in a care home as she needs full time care due to falling issues. Now my mum’s totally against this and would like to stay in her own house if possible, but nurses are telling me that there’s no way she’d get 24hr care as hardly anyone gets it. How would I go about trying to see if this is possible?

      • Mary 1 month ago

        My mum has now been awarded CHC, backdated to February, 2016. She is 95 late stage dementia, bedbound and immobile, and doesn’t speak. EVERYTHING has to be done for her. We would prefer to keep her in her own home (she owns her flat within an extra care complex with 24/7 LA carers on premises) and wonder how much care might be available to her, and if 24 hour care could be available and by whom. We have a meeting with the NHS social worker in 10 days and want to be prepared and know what we can ask for and expect. The current care provided by LA doesn’t meet her needs, and we have been complaining about this for over a year, making a formal complaint to Council 7 months ago, without a solution & therefore taking it to the LGO 4 months ago. The investigation is in process. Any comments/help/advice would be greatly appreciated.
        Mary

  4. P J Nichols 10 months ago

    My husband is being nursed at home with Continuing Healthcare under a local hospice for end stage heart failure. He is normally looked after by me with the aid of carers and the district nurses. He recently spent a week in a local nursing home for respite care. We chose the nursing home from a list given to us by the Hospice. He had a standard room and the cost for the 7 nights was £1200, which is pretty much the norm for all the care homes on the list in our area. We chose it because it offers what he needed in terms of nursing care and was relatively easy for me to get to. We were told we would have to pay top up fees of £500, which we did. I now question whether we should have paid this top up fee but am confused by the legislation regarding when top up fees should be paid by someone having 100% funding from the NHS. Can anyone help?

    • Author
      Angela Sherman 9 months ago

      Top up fees apply to local authority care (social care) only. This is different to Continuing Healthcare. If your husband receives Continuing Healthcare, this funding should cover ALL assessed care needs, i.e. everything he requires for all his care needs. For more on top up fees: http://caretobedifferent.co.uk/care-home-top-up-fees/ Continuing Healthcare cannot be topped up. It is up to the care home to complain to the NHS if the NHS has not paid them enough.

  5. Sandra Williams 9 months ago

    My mum has full nursing care. How many weeks respite a year is she entitled to?

  6. Elaine Sloggett 9 months ago

    My father was sectioned under the mental health act earlier this year due to the continued decline in his dementia/alzhiemers. After the assessment period it was deemed that he more than met the criteria for CHC and we were given a list of homes available. We picked the home most suitable which was also recommended by the hospital staff as being the best for dad’s needs, dad moved in April. In May we were asked to attend a review by CHC. They deemed that he no longer required CHC funding as he appeared to have settled down (dispite there still being documented evidence of violent outburst) we were told the fees would be paid for by Social Services. Although we disagreed with their report, we were told that it was just a case of which pot the money came from and so we proceeded to get all paperwork to them for dad whilst having to then sort mum out mums financial details to get her Pension Credits, as they are now taking all of dads pension and work pension to pay towards his care. We have just been hit with another bomb shell to say that Social Services will only pay a certain amount of the fees as the care home is a specialist dementia home and more expensive than others and asked if we (the family) could pay the difference in cost for the home. My mother has move from a rented 3 bedroom house (family home for over 50 years) to a 2 bedroom so that she can afford the rent as the County Council pay an allowance based on occupancy. She is 82 and the stress is unbearable. What can we do? Dad is still prone to violent outbursts, is doubly incontinent and has to be fed and monitored 24/7. We feel this should fall under CHC, can you offer any suggestions please.

  7. g.gillson 9 months ago

    I live in powys wales what are the differences btween England and Wales.

  8. Cal 9 months ago

    Advice please. My mom who is in a nursing home was given CHC full funding from 30th Sept 2015. We are now being told her needs have increased and
    we have to top up another £190 wk. What should we do.

    • Author
      Angela Sherman 9 months ago

      CHC cannot be topped up – indeed, it would be illegal for the NHS to ask for top ups for NHS care; only local authority care can be topped up. All your mother’s assessed care needs should be covered by the CHC funding – and if the care needs have increased, CHC should cover these too.

  9. Margaret 9 months ago

    My husband has just been awarded continuing CHC but I’ve been told he still needs to continue his standing order to the care home. They say the council top up will discontinue but his contribution has still to be paid.
    This is £1,196.38/ month.
    I don’t understand why as the CHC said he would be refunded from the date the assessment was agreed at panel.
    The home say he still has to pay.

    • Author
      Angela Sherman 9 months ago

      Your husband’s care should be covered in full by CHC funding, Margaret. His payments to the care home should cease with immediate effect and CHC payments backdated to day 29 after the original Checklist (not the actual decision). He should receive a refund of any fees he paid after this date, and the care home should not ask him for any more. CHC is payable from day 29 after the Checklist date regardless of how long it takes the NHS to actually reach their decision.

  10. Diana Cotter 9 months ago

    My 92 year old mum normally lives with me, but she broke her leg in two places last week and has been in hospital for 8 days. When I spoke to the discharge officer today, she told me that mum would have to go into RESPITE care for around 4 weeks until she is able to weight bear, and then into INTERMEDIATE care for rehabilitation. She has said that mum will have to pay the care home fees for the respite period, but this doesn’t seem right to me, because she said herself that mum has to go there because she has medical needs. Nobody mentioned anything about NHS continuing healthcare – they just wanted to know how much money she has! She was very keen to stress the difference between respite and intermediate care, so any advice you could give me would be most welcome.

  11. Janet Benton 9 months ago

    My Dad has suffered vascular dementia for over 5 years and my Mom has cared for him. They are 87 and 86 respectively. We managed to get day services and care in the home for him just over 12 months ago. As his condition worsened and Mom became more tired he went into a EMI nursing unit a couple of days ago for two weeks respite with a view to permanency. On the second night I had a call to say he’d had a fall and had been pacing all night. The night nurse told me his room was unacceptable as it’s too far from the nurses and is in an isolated part of the unit, that he is the most vulnerable patient they have and that he desperately needs one to one care. She tried to do this as part of her shift but clearly having other patients to see to as well this led to his fall. The home are trying to get one to one help from an agency for the two weeks he is in the unit, however, I know this cannot continue for longer than that. How likely is it that we will be able to get CHC for him? The staff are trying hard to document as much evidence as possible in order for this to happen but I’m worried about what happens in the meantime.

  12. J hynes 8 months ago

    My mother was recently in hospital with a chest infection & cellulitis. She has got COPD, under active thyroid, type 2 diabetes & MS. She is unable to stand. We have care three times a day. In May she was diagnosed with lung cancer but no biopsy was done. She is 90 years old and as she had no symptoms it was decided to leave well alone. She is now terrified to be alone at night. I have stayed with her for seven nights as she has been having panic attacks. She was released from hospital on the understanding that a palliative care team would be set up. I’ve been told that she does not qualify for night care as she is not at risk from falling or wandering. What can I do?

  13. Christine Darling 8 months ago

    My 90 year old mother has been living in a residential home which she was moved to by my niece to have her near my niece without consulting the rest of the family. My niece is down as her carer. Her health is really bad and she can no longer do anything for herself. Her flat is filthy and she hasn’t been washed for ages, she had been bed ridden for nearly for weeks. My niece has been coming in and giving her milk and water and then leaving, her bedding has been changed once in nine months. She was admitted to hospital and is now in a rehabilitation ward. They were going to discharge her and send her home but i told them she can’t look after herself. The residential home (mum has a flat, council run) The staff unfortunately think my niece is wonerful as she comes in every day. My niece is also taking money .. in large sums from my mum. Am at my wits end to know what to do.

    • Author
      Angela Sherman 8 months ago

      That sounds really distressing, Christine. Does your niece hold power of attorney? If she does, this could be a matter for the Court of Protection, as she may be abusing that power. If she doesn’t have power of attorney, she has no right to make decisions on behalf of your mum – and the care authorities should not be dealing with her.

  14. Christine 8 months ago

    Hi Angela, no she doesn’t have power of attorney. She is down as next of kin and as her carer. My niece lives ten minutes away and we live about 2hrs away. My husband runs his own business and often works unsociable hours. I don’t drive so sometimes it is hard for us to visit. Mum was worried about money she had in her purse and a safe and gave us permission to take it home with us. We are now accused of theft, which is daft as my husband is the executor of mums Will. I have been told that i am legally her next of kin. If i can get mum to agree, can i get her moved near to me once she has a care package in place? My husband has had enough and just wants them all including mum to just get on with it. I can’t just walk away…

  15. Janet Benton 8 months ago

    Thank you for your advice and the wealth of information on your website. Today I have had the news that my Dad has got the funding and is moving into a specialised Dementia unit with one to one dedicated support. It took me exactly two weeks from doing the initial checklist to get the result I wanted – and despite being told he probably wouldn’t get it as the assessor would say the decline is due to the different environment (he originally went into the home for a two week respite stay but this was extended) – I persevered. Dad’s social worker and psychiatric nurse were absolutely fantastic and worked incredibly hard with me and for my Dad as were the care home in collating and recording every scrap of evidence we needed to secure the funding. I could not fault them at all and it sounds like I have been extremely lucky in that respect. The DST lasted for three hours and although I expected an assessor to be present, they were not there, apparently the bulk of the work is now done by other professionals who have to collate and prepare the application. The meeting consisted of myself, the deputy manager of the care home, the social worker and the psychiatric nurse, all of them worked in their own time to make sure the application was processed quickly. The meeting took place on a Wednesday, the paperwork delivered by hand on the Friday and by the following Monday (today) I was told we had been successful. I do not hold an LPA for my Dad and wonder if that may be a problem in the future if they decide to take it away. However, Dad is not going to recover from his vascular dementia, rather the opposite. I have learnt so much from your website and the CHC stories and feel appalled by some of the experiences recounted. While waiting for the funding my Dad did not have any one to one support for three nights, three nights of wandering the corridors, not sleeping in a bed and falling over. Then he had 10 nights of one to one support for 12 hours overnight resulting in him actually sleeping for short periods in his bed by day 6; eventually the Local Authority agreed to provide 24 hour one to one support for his remaining 5 days. By day 14 we were in a state of limbo, the Local Authority had not approved 24 hour one to one support, the care home wouldn’t keep him without it, he couldn’t go home as the care package at home had been cancelled and he couldn’t be moved to a place who could meet his needs as we didn’t know if the funding application would be successful. In desperation I called my local MP whose secretary was appalled at the situation but had never heard of CHC funding! Finally, at the eleventh hour the LA approved the 24 hour one to one care he so desperately needed while waiting for a decision on the funding. The last 18 days have probably been the most stressful I have ever experienced and I’m at a loss to understand why families have to suffer so much stress and anguish at such a difficult time in their lives. I wish every single family the best of luck and I hope you manage to get as much support as I did, but sadly it seems this is not going to be the case. I am preparing a second letter to my local MP to make him aware of the difficulties faced in securing the funding and intend to pursue it as far as I possibly can.

    • Author
      Angela Sherman 7 months ago

      I’m so pleased you were able to secure the funding in such a short time, Janet. Well done for persevering, especially after being told that your dad ‘wouldn’t get it’. That’s such a common statement – and it usually has no basis because no assessment has at that point been done! It’s always good to hear when things have gone well and when the professionals involved have followed the guidelines and gathered the correct evidence. Your dad’s actual care provision prior to that sounds chaotic and, no doubt, distressing. Your sentiments about the stress that families have to go through at these times would, I’m sure, be echoed by many thousands of families across the country and, as you say, many people in public office have never heard of Continuing Healthcare. Thank you for your kind feedback on the Care To Be Different website. I’m glad it’s helpful. You may find that not having an LPA for your dad could potentially be a problem – and it may be worth applying for a Deputyship order.

  16. Lynne 8 months ago

    Mother has dementia with no memory at all. She is 91 and has been put into a care home very quickly for her own safety on xmas eve. This is all new to us and tomorrow they are going to do a financial assessment on her with us. She has all the usual complications with Dementia and memory loss. I am sure I don’t need to do a long list. She has become incontinent and lost all her personal hygiene knowledge and suchlike. We are scared about all the costs. She is under the personal savings limit but does have her own bungalow. Would you please try and help us and explain what you think we should have to pay. The social services man that saw her the day before she went in taken into the care home and talked about mental health??? Please can you help I don’t have time to get your book let alone read it the speed things have happened.

  17. Gill Mallard 8 months ago

    My mum is 88 and in a carehome she as Parkinsons disease and I think dementia. She has no long term or short term memory, is double incontinent and unable to walk. She has to be hoisted and all her personal needs have to be done for her including feeding. She is self funding and nearly all her money gone. Two people have mentioned continuing healthcare to me now and wonder if she would qualify. I have joint power of attorney with my sister but sadley she died three days ago. Some advice on how to start would be gratefully received.

  18. Sue Taylor 8 months ago

    My father who is 89 years old has been in a care home for over 5 years since my mother died (she was his carer). He suffers from schizophrenia, dementia and heart problems. His mobility is extremely poor and he is unable to care for himself. He has been self funding during his time in the care home. His savings are now running out and we will need to sell his house to pay his care home fees. We have been told he is not entitled to claim any financial help with the cost of his care. Would he be entitled to NHS continuing health care or any other financial help? I would appreciate any advice please.

    • Author
      Angela Sherman 7 months ago

      Sue – as with Gill above, you need to get your father assessed for NHS Continuing Healthcare as soon as possible. That’s the only way to know whether he would qualify. No one can tell you he won’t qualify without the assessment process having been done. Read our FAQs, too: http://caretobedifferent.co.uk/nhs-continuing-healthcare-faqs/

  19. Clementina Chukwu 8 months ago

    I have a 33 year old daughter who is fully funded under the NHS Continuing Healthcare. I work full time Mon to Friday and while I am at work, my daughter attends a day centre for people with profound disabilities. When she was funded by the council, she had a financial assessment and the result was £00.00 contribution to her care package. I provide on going am and pm personal care alone with hoist and do the overnight support due to uncontrolled epilepsy (happy to do this). I get usually one week respite when I go away with other local carers for a break and NHS funds 24 hour support at home. The rest of the respite I use in hours at weekends to do shopping and other tasks.
    Recently day services contacted with invoices saying that NHS will not pay for food and drinks while my daughter is at the centre because it is not part of the care (Speech and Language and Dietician provides weekly monitoring, draws up the diet and trains the staff and I). They want my daughter to fund her own lunch and drinks while at the centre. I have talked to other families and CHC Coordinator in other areas and they confirmed that day care is funded like other services (nursing or residential) with one unit cost and not separated into care, food and drinks. Other families outside my CCG are not paying this so why should she. The answer from her CHC Nurse is that she has benefit to fund such. Unfortunately the family already funds a lot of her costs because her funds go to pay other disability costs like better quality pads for night time and travel since our CCG changed to poor quality pads, daily laundry(heavy sleep system beddings , heavy wheelchair covers and slings, special meals liquidised as prescribed, insurance on replacement of liquidisers, oral care products, antiseptic, bed and chair mats and heating (these are not funded by NHS although I am doing nursing care at home). Has this come up in the past because if right, it should be unified in all areas?

    • Author
      Angela Sherman 7 months ago

      Clementina – I agree that it doesn’t seem right that the NHS is not paying for food and drink. NHS Continuing Healthcare provision should be the same regardless of where you are. There are national guidelines, national eligibility criteria and national processes to follow.

  20. Caroline Macfarlane 8 months ago

    My father had Advanced Alzheimers and then went on to get prostate and bone cancer. He originally went into a care home for 6 weeks to give my step mum a break but sadly she couldn’t’t cope and he never went back. Originally he had a local authority Older Adult Needs and Outcomes assessment done by a case worker where he was deemed Eligibility Band:Critical Risk, Eligibility Need:Health and Safety and Eligibilty Code: AC2 Significant Health Problems have developed or will develop. His Annual and Weekly Budget was also noted on the form. He then had to pay for his care from July 2010. We never knew any different until one day another daughter visiting her father told me of the Continuing Care package. My father’s health had deteriorated so much by then that all we managed to do was get him fast tracked so he got the funding for the last 6 weeks of his life.Sadly he died 24/8/2012. We are currently going through a review to see if we qualify for retrospective funding. I wonder if the fact that my late father was means tested at the start and never assessed for NHS continuing care until end of life will have any bearing?

    • Author
      Angela Sherman 7 months ago

      Hi Caroline. Yes, your father should most definitely have been assessed when he first went into the care home and before any questions were asked about his money and before he was means tested. The health and social care authorities have failed in their duty to carry out the proper assessments and you may well have a positive retrospective claim. The local authority could have been in an illegal position before your father died, as they effectively took responsibility for care that was probably behind their legal remit. http://caretobedifferent.co.uk/nhs-continuing-healthcare-should-social-workers-be-involved/

  21. James 7 months ago

    My Mother-in-law has an undiagnosed progressive neurological condition. She currently part owns her own flat in an extra care facility, and has regular carers that are funded through NHS continuing healthcare. Her needs are increasing and I think the current company providing care are struggling to cope. We are reluctant to move her from her flat as it has been heavily modified and is close to a lot of her family.
    Ideally, we think the best care for her would be provided by a personal assistant who is with her during waking hours, who can then coordinate her complex care needs with other carers.
    We are worried that due to the problems with her current care company, she will be forced into a home, none of which we have viewed so far will be able to cater for her very complex needs. Is getting personal assistant type care in her own home feasible?

    Thanks

    • Author
      Angela Sherman 7 months ago

      James – It sounds as though your mother-in-law needs live-in care. From experience I know that the NHS will often insist on putting in place their own carer when a person is funded through Continuing Healthcare. This may not always be ideal, though.

  22. Darren 7 months ago

    In 2008 the council and district nurse said my late father would not qualify. This was before they had even seen him.
    I have been appealing ever since. A ten year retrospective review has just been completed, does not qualify. The matter is however under appeal with NHS England (because while the PCG manager was off long term sick, and thus his case was not heard, my father passed). I am awaiting that appeal date. I have been in the retrospective process since June 2014, a month after he passed. It is my experience that councils and the NHS will try every trick in the book. I happen to have a video of my father from 2009, which NHS England considered would be very useful with the retrospective process but which the last manager decision maker refused to allow as “evidence” at his *new* retrospective review. I have also been in contact with the legal firm recommended by Nicola Mackintosh who in 1999 represented Pam Coughlan.

    • Author
      Angela Sherman 7 months ago

      The reports we receive from many families echo your own sentiments, Darren.

  23. Maggie Davidson 7 months ago

    My father is being assessed for Continuing Healthcare so I’m going to have a look at your book, however a quick question I have is if his is eligible can we have a say in what home he goes into or will the NHS choose it?

    Thanks

    • Author
      Angela Sherman 7 months ago

      Sorry for the late reply, Maggie. You have choice. If there’s a care home you like, find out whether they have – or have ever had – residents funded via Continuing Healthcare (CHC). If they have, the NHS can’t argue that it’s not suitable.

  24. Heidi 7 months ago

    About 9 months ago my grandfather had a bad fall and ended up in hospital . For the next few months he started to deteriorate. He lost the use of his legs, very limited mobility and prone to falling but tried to walk and would end up having to go back into hospital. Each time the hospital would discharge him to a home whilst care was sorted out by the social services. After the first fall home care was arranged for carers to attend four times a day. At this point we were told to fill in the financial assessment. Also the social services stated that he should not be in his house on his own therefore my grandmother could not go out when she wanted. When he was in hospital he had assessments but when we have asked for results they have failed to inform us. They failed to tell us that he was on medication when we enquired. After the last time he went in to hospital they said that he needed a night carer for incontinence but the social service agency could not provide this as he became aggressive with the careers, so the agency refused to take him back on, other agencies could not provide this service so they said that he could not go home and would need to be placed into a residential home. This was just before Christmas. Since then we have been sent a bill from homes he went to after hospital discharges. Is this something that we should be billed for? The social services have never informed us of NHS continuing healthcare. I was wondering if we should have been made aware of this when he was put in permanent residential care? He is also starting to forget who people are and I do not believe he has had the correct assessments.

  25. Steve Hassell 7 months ago

    My 86 year old Dad was granted CHC whilst in hospital. He has Vascular dementia, is PEG fed, diabetes and has had several TIA’s.
    He went into a nursing home in October where he is being looked after very well. A recent assessment for CHC has deemed he is now no longer entitled. We are thinking of appealing this decision because although he has settled in quite well he is still prone to flair ups and mood swings.
    The CHC was completed whilst he was in hospital, the staff there filled it all in so we did not see what was written down at all. Are we now entitled to see this form if it would help with an appeal?

    Thanks

    Steve

    • Author
      Angela Sherman 7 months ago

      Yes, you should have a copy of all assessment forms – and especially if you hold power of attorney, Steve. It’s vital to see the rationale behind the removal of funding. There is a good chance it is flawed. Here’s what to do once you have the assessment notes and as you’re thinking about an appeal: http://caretobedifferent.co.uk/appealing-a-continuing-care-funding-decision/

  26. Diana 7 months ago

    I’m reading with great interest your info on CHC. My mum is 88, had a memory test via her GP on our instigation as we feel she has Alzheimer’s which is progressing rapidly. She lives in her own home and because I became homeless myself a year ago, I live with her. I am 64. If she needs to go into a home soon, is it correct that because it is also my home, that it cannot be sold to pay for care fees whilst I live there? Would it be a case of ‘deferred payment’, in other words, if I were to leave that house, THEN the fees owed would have to be paid?

    • Author
      Angela Sherman 7 months ago

      Generally speaking, if it is your home, Diana, you should be able to stay there. Also, you are over 60. if you did leave, though, and there house was then empty, that could be a different matter. AgeUK have some useful information on their website about this.

  27. Caroline Brown 7 months ago

    My dad has Alzheimer’s. Since December we have been to A&E three times. Once from him calling saying if he had a gun he would kill himself. Second having a fall and breaking his arm and third from me not being able to pick him up after a fall. He called police last week because of hallucinations and I had to call day after as he went missing.
    I can’t cope as an only child with no family and I am thinking I probably need permanent care for him.
    He has also been classed as ‘terminal’ from the hospital as he has pre-cancerous cells near his pancreas.
    Do you think I might be entitled to CHC funding? The cost of care is extortionate and dad is probably classes as self funding as he owns his own home but it doesn’t mean I can afford permanent care without making life changing sacrifices. I just don’t want to seem silly in applying if he has no chance!

  28. Nicole 7 months ago

    Hello – my 40 year old brother has recently moved to a care home nursing bed. Although he has Continuing Healthcare funding (CHC), the care home is rationing or not ordering the items he needs: Swedish noses for his tracheostomy, glycerin swabs for his mouth and adult nappies. When asked, the response is these are “nursing items and not items care homes can order, they are not available via the GP”. His social worker has tried but keeps getting the same reply. But the home has said we can have them if we buy them. Are these items that the family is expected to obtain or are they included in the Continuing Healthcare funding? The care home is charging £2000.00 per week.

    • Author
      Angela Sherman 7 months ago

      Hi Nicole – if your brother is receiving CHC, the NHS should be funding ALL his assessed care needs, and no one else should be asked to pay for those things. It is the care home’s problem, not yours. This also sounds like neglect and/or a safeguarding issue if your brother is not receiving the care/care products he needs.

  29. Allison 7 months ago

    Hi, my uncle has vascular dementia. He has been self funding in a residential home for 18 months. He is currently in hospital having had a bad heart attack. He is quite poorly and I want him to return to the care home. They are happy to have him back but I want the hospital to fast track him for CHC. He doesn’t have to be in a nursing home does he? It’s his home, so I’m guessing he’s entitled to CHC funding the same as if he was at home?

  30. Barbara 7 months ago

    Hi,
    Today, after yet another so called resolution meeting, we were told that, to qualify for chc, mum would have to require the intervention of the district nurses.
    Her needs would have to be over and above normal care provided by the care home, but they say that since her last assessment in December, she now needs another as she has now suffered a deterioration in her health.
    I do not understand why they consider this as necessary, as how can they say that this may tip her into the qualifying categories but then say she has no health care needs.

    What is the point of the DST if she fits the scores but still does not require specialist care.

    • Author
      Angela Sherman 7 months ago

      Hi Barbara – the qualifications of the people providing the care are irrelevant in Continuing Healthcare (CHC); what matters are the day-to-day care needs, regardless of who is managing those needs. Also, it’s the underlying needs that count, not the needs as they appear once care is in place. Your mum does not need to be receiving specialist care to qualify. Also, the CHC process is not an assessment of whether a person’s care is above ‘normal care provided’; that’s nonsense. It sounds as though you’ve been given incorrect information at the resolution meeting, which is sadly not unusual.

  31. CazUK 7 months ago

    Hi there. Firstly, great page. My husband is getting NHS continuing healthcare after I found out about it myself a year ago. What I wanted to know is as a carer and wife I would like to have a respite break of a weekend. I would feel guilty and worried if longer. Do you think that this will be paid for by the NHS or would I have to pay for that myself. Everyone is always telling me I need it but never offer a solution so I can get a break.

    Thank you

  32. Barbara 7 months ago

    Can you just clarify something in relation to my last question please.

    Is it the case that, if mum’s score on the DST said that she did qualify for the funding, would that mean that specialist intervention from the district nurses would not be required?

    They say that a primary healthcare need is something that needs more than her care home can give her, the examples given to us were, if she needed to have injections, or if she had skin breakdown which was not responding to treatment.
    They say that these are things that a residential home could not do and this is when specialist care comes in which in turn would qualify her for funding.

    Many Thanks

    • Author
      Angela Sherman 6 months ago

      Hi Barbara – a person does not need to receive specialist care in order to be eligible for CHC; so if the outcome of the multidisciplinary team assessment (MDT) and the notes in the Decision Support Tool (DST) show that your mum is eligible for funding, it’s irrelevant whether the district nurse is involved. If your mum needs the district nurse to be involved to meet her care needs, then that’s one thing, but that specific involvement does not determine CHC eligibility. What matters are the overall assessed care needs, regardless of who might be providing that care. Eligibility does not depend on what a care home can provide; it also does not depend on the type of care home – it can be a residential home or a nursing home or it can be care at home. Eligibility depends only on what the underlying care needs are, regardless of what care is already in place. If the care home can’t meet those needs, that’s a separate question that would need to be addressed – for your mum’s safety. What matters always is the overall picture of care needs and risks. There is no specific intervention that has to be provided for a person to qualify, i.e. a person does not have to have injections, they do not have to be on a ventilator, they do not have to be at end of life, they do not have to have pressure sores, etc. etc. They may have these needs, of course – but eligibility is not about any specific diagnosis or intervention. Sadly many families get told a lot of nonsense about CHC – and are persuaded that their relative has to have specific needs. It’s not true. It sounds as tough the care home doesn’t understand CHC.

  33. Karen 7 months ago

    We received a Decision Support Tool (DST) in March 2015 – 3 years after our application was sent for a Retrospective Review. The covering letter said that there was no need for domain weightings or recommendations at that stage. There were pages of detailed day to day care records. We were asked to give our domain weightings to each domain which we did. The MDP met, (2 people) in August 2015 and decided that my father, who had dementia, Parkinson’s, throat cancer, renal failure etc. was not eligible for NHS Continuing Care. He had a score of 4 High and 4 Moderate ratings although we believe every domain was watered down to ensure that nothing was shown as Severe or Priority to support the non-eligible decision.

    We are appealing and have a face-to-face meeting in March 2016. I want to be sure of my facts.

    Question: Should there have been domain weightings and recommendations on the DST in March so that we could compare our weightings to the recommendations? I understand that the MDP would have used the DST and the weightings to form their final decision. I believe that it should have. I believe that this would be grounds for the MDP to look at their decision again. Thank you.

  34. Barbara 6 months ago

    Hi again,
    I would appreciate some further advice and clarification. Mum has been denied funding, we have been appealing for a year now.
    The whole process has been a farce, but, we are not giving up.
    Mum has score 1 severe, 2 high, and 5 moderates on the DST, but we and the care home disputed 4 of the decisions, which would place her higher.
    Mum is doubly incontinent, has a puréed diet, thickened fluids, has had pneumonia/ chest infections in the part, has had 2 incidents of skin breakdown, needs to be hoisted as totally immobile, sustains regular falls from bed, has to be repositioned both when sitting in her chair and throughout the night.
    Mum requires an air mattress on the bed and on her chair and the chair is a tilt and space which is a more specialised one than a normal wheelchair.
    Mum is unable to communicate verbally, other than to say yes or no sometimes, but not in context to anything sprcific. She recently spent 3 nights in hospital following a stroke, and was discharged back to the care home as end of life/ palliative care, complete with drugs to keep her comfortable if required. Thankfully these have not yet been needed. She suffered a further two strokes after her discharge.
    Mum was found face down in her own vomit, and struggling to breath after a fall from bed.
    The hospital raised concerns about her weight, stating that she is severely underweight, in addition she suffers from severe bouts of diverticulitis which are unpredictable in when they occur, how frequently they occur and how long they last for. During these attacks her diet has to be modified and it invariably impacts on her weight.

    Despite all of this, we are being told that these are not primary health needs, and that to qualify mum would require specialist care via the district nurses which could not be provided by the care staff.
    Examples given were, if mum had a pressure sore that was not responding to treatment or she required injections or complications due to diabetes. She is pre diabetic and this is managed through her diet, but we are told this does not qualify.

    Any advice would be appreciated.

    Thank you

    Barbara

  35. bex 6 months ago

    Hi – I support a gentleman with dementia; he has been awarded CHC however I am unsure as to whether this covers the 28 hours 1 to 1 support he requires a week originally put in place by social services.

    • Author
      Angela Sherman 6 months ago

      The CHC payment should cover all the needs and risks assessed during the CHC process – everything discussed at the multidisciplinary team meeting (MDT) where the Decision Support Tool (DST) was completed.

  36. barbara 6 months ago

    Hi Angela,
    No, we have no problem with the home, they have taken such hood care of mum, ad for fast track, she was declined by the district nurse on the day she returned from hospital, without even completing a fast track assessment.
    They say she is eating and can breathe normally, and does not meet the criteria.
    On the back of the incident where she fell out of bed, they did a checklist, without telling us or the home, we were not given the opportunity to attend.

    It is marked as advocate and individual was informed, despite mum cannot understand or respond to anything.

  37. barbara 6 months ago

    Following on from my previous posts please can somebody tell me whether it is OK and normal for one of these Checklists to be completed without the knowledge of either the family or the home.

    It states that mum was asked if she would like a family member present or an advocate, this was circled yes and underlined. It also says yes where it asks if she knew that the information would be shared.
    However, she was asleep throughout, and can neither communicate verbally or understand what is being said to her.

    I do not understand this.
    They have also scored her lower in some domains than they did in the full assessment which they carried out in December 2015, yet she has just suffered 3 strokes in the space of 3 weeks.

    • Author
      Angela Sherman 6 months ago

      Hi Barbara – no, it’s not correct for the Checklist to be done behind everyone’s back. It sounds as though the CHC team has falsified information on the form, by stating that your mum was able to answer those questions. That’s a serious breach not only of the guidelines, but also of professional standards/codes of conduct and possibly also the Mental Capacity Act. Ask them to show you a copy of the Mental Capacity assessment. This may help: http://caretobedifferent.co.uk/mental-capacity-assessments/ If they can’t, it’s clear they have falsified the information. It also sounds as though they have deliberately played down your mum’s care needs and failed to address her current state of health.

  38. janice 6 months ago

    I have an uncle and aunt who have no children. My aunt has been diagnosed with dementia and went into hospital and then into a care home because she had a UTI . My uncle could not cope on his own because he had had a stroke a few years ago.So he went into a care home.Then my Aunt came out of hospital and joined him . I have been told yesterday they can not return home because my aunt needs 24 hour care because of incontinence and mobility problems and they are worried about night time care so they are saying they both will have to stay in the care home and sell their house. Am I within my rights to ask for a NHS Continuing Healthcare assessment ? I am getting power of attorney for both of them at the moment because mentally my aunt is at early stages of dementia – although physically she is suffering more.

    • Author
      Angela Sherman 6 months ago

      You’re absolutely right, Janice. No one should be telling your aunt and uncle to pay for anything until the NHS Continuing Healthcare assessment process has been carrie out – and carried out properly. Make sure they are each assessed separately – as individuals.

  39. Debbie 6 months ago

    My dad has terminal prostate cancer and has been in hospital for some 9 weeks now. He was originally admitted with a water infection and was hallucinating, which led to a fall at home and the paramedics took him in as a precaution. As soon as the staff knew his illness was terminal they left him in bed with no physio for a month resulting in so much muscle loss he had no strength to even get himself up and out of bed. Now after 9 weeks he is totally bed ridden. He has c-diff which is debilitating to say the least and needs daytime as well as night time care as his pads need to be changed on a regular basis. We have been told there is a care plan in place but it does not cover/include night care which will be a huge problem and our main concern. My brother is dad’s main carer and is more than willing to have him back home (which is what dad would like too) but what I am very worried about is if he is caring for him during the day how will he get enough rest himself if he is being woken 3/4 times during the night. I don’t understand why they think care during the night is not as important or necessary as in the daytime, which to be honest, is dad’s worst time. Although my brother is happy to deal with dad’s ‘little problem’, my dad says he is not as he feels unhappy/uncomfortable that my brother should have to do this. Evidently we need to fund night care ourselves which is very expensive. Before dad was admitted he was mobile, he could manage the stairs, make himself a cup of tea and occasionally take a trip out. We feel the hospital are mainly to blame for dad’s decline in his health because if they had listened to our views in the beginning about getting him up and out of bed to keep him mobile, we wouldn’t be in this very sad and frustrating position today. If someone has a terminal illness you don’t just give up on them no matter what. He could have enjoyed another 6 months or so of normality in the comfort of his own home. In between the 9 weeks he was admitted to hospital, dad was discharged (rather speedily I might add but that’s another issue) to a nursing home but his treatment was appalling and ended up back in hospital after just 2 days! The problem I have now is that the hospital want him out and my brother and I feel overly pressurised everytime we visit dad. The co-ordinator dealing with this just keeps pushing and pushing to get dad out, his health doesn’t seem to be a big issue to her and doesn’t want to listen to how we feel about it. As we have refused to send him back to the nursing home she’s decided to look for a place for dad without our consent and we’ve been given a list of nursing homes further away from where my brother and dad live to view as well. We just dont know where we stand with the situation or which way to turn, its a living nightmare!!

  40. Paula Hall 6 months ago

    Not sure if you can help, if not perhaps you can advise us where we can get help. A very close friend was diagnosed with early onset Alzheimer’s 2 years ago ( she is a single mum). Her daughter, then 20 years old, was managing the situation mostly unaided. Last November the mental health nurse suggested that the daughter move out as she believed having her around wasn’t helping her mum. The daughter moved out, although very upset at being told to do so. However, this move didn’t help matters and my friend, deteriorated even more rapidly . My friend was recently sectioned and we ( her family and friends) hope that she will be able to move to a care home that we looked at while she was still able to say she liked it. My friends daughter would like to return to her home, however her mothers power of attorney who is also her financial adviser says he doesn’t think he will be able to allow her to return home. My friend has enough money invested to cover 5 years of paying for a care home without selling the family home. Do you know if her daughter, Claire, will be allowed to go home or is the power of attorney correct in saying Claire will not be able to do this?

  41. Eric Watson 6 months ago

    My father, a self-funder, has just been awarded CHC backdated to 11th April 2015, a date 29 days after the Checklist was first carried out. The CCG, in their letter informing me (I am his POA) of their decision, have advised the following:-

    “If you have paid anything towards your father’s care between 11th April 2015 (date from which funding is awarded) and 29th January 2016 (date from which we have contracted with the Care Home), please send receipts and details of the bank account into which you require any reimbursement to be paid. Please note that you may not receive the full amount that you have paid as we will only refund up to our benchmark.”

    It’s that last part that concerns me as that effectively means that my father will have paid a top up to the Care Home for the back-dated period. Indeed, going forward, it would appear that the CHC award will not meet the full weekly cost of his care and that a top-up will be required for him to remain in the Care Home. Is this correct and legal or are the CCG and/or Care Home acting outside their legal remits?

  42. Jackie 6 months ago

    My mum fell at home just before Christmas fracturing her right hip collar bone; she ended up having a partial hip replacement. After 8 days in hospital she was transferred to a smaller local hospital for rehabilitative care. However the physiotherapy which she needed was a very slow process and one of the nursing sisters after a week’s leave, was shocked at how little progress my mum had made. She now needed a zimmer to help get her walking again + she has COPD and she was more breathless than usual. Prior to her fall my mum was very good at managing her asthma. Anyway she was discharged from hospital 5 weeks after her fall having been assessed by the therapist as needing 4 care visits a day.
    She arrived home by ambulance in a frail state and was told by her social worker she would only be receiving 2 visits a day. This alarmed my mum + me and my sister especially as my mum lives alone and it was clear she had become institutionalised. Four days after returning home she was back in hospital with pneumonia which had been brewing before her discharge from the rehab hospital as she was experiencing breathing problems then.
    After being in hospital for 9 days she returned home on 6/02/16 and this time with 4 care visits a day. However because of a lack of physio her walking ability is poor; she doesn’t have the confidence to walk with the zimmer when she’s at home by herself. I was informed yesterday by my mum’s social worker there’s a meeting on 1st March with the community matron, a therapist and my mum, and as the social worker found out about this meeting she thought she needed to be there. She assumed that me and my sister were aware of this meeting which we weren’t, and whilst speaking to her I queried the absence of any physio input. This surprised her as she believed my mum was receiving physio from when she was discharged.
    We, i.e. my mum, sister and myself have been informed that for the first 6 weeks post-discharge that the care visits are free and after that my mum is expected to make a weekly payment.
    My mum had been quite a capable 88 year old woman who looked after herself; she managed her own medication; dressed herself albeit slowly; showered herself daily; was a happy lady; and for a woman of her age had a decent memory. She now is miserable, isn’t capable of caring for herself, unable to walk, and because she is not using her muscles sufficiently, at night she’s too slow to get herself up and on to the commode that she’s ‘wet’ herself and is then laying in wet bedding until the first carer arrives in the morning. This has already happened twice this week.
    I think my mum comes under the category for requiring Continuing Healthcare by the NHS + she’s been let down by the NHS by not receiving the physio input she needed from her discharge which is almost 3 weeks ago.
    I just would like to be prepared for this up-coming meeting on 1st March. Do you have any advice please ?

  43. Pearl Baker 6 months ago

    I support those individuals who suffer from Mental Illness, most subject to Section 117 of the 1983 Mental Health Act. Where they receive free aftercare/ there is confusion, would you say they should receive accommodation as part of their ‘Care Plan’, and their medication free if they are not in receipt of Income Support? a qualifying benefit?

  44. Jessica 6 months ago

    My mother has very advanced MS and having worked through the online tool, she would be eligible for CHC. I requested a CHC assessment for my mother back in May, it took about 4 months before I successfully managed to get the social worker out for the initial assessment, and despite the fact that NHS and social care are meant to be doing joint assessments now, it was another few months before the nurse came to ask the same questions of my mother and her live-in carer who we currently pay for. It is now February and I have had nothing from the nurse about when they will complete the next part of the assessment despite my requests for an appointment to at least be made. Most the time she does not respond to my emails. How long should this process take from my initial request for an assessment and how can I make a complaint if I feel it is appropriate?

    • Author
      Angela Sherman 6 months ago

      Hi Jessica – the Continuing Healthcare assessment process should take 28 days. As you’ve probably guessed, many families report that it doesn’t happen with that timescale. You may want to write to the Head of Adult Care at the local authority, and inform him/her that the local authority is potentially in an illegal position, by not having properly ascertained whether or not your mother’s care is beyond their legal remit. http://caretobedifferent.co.uk/nhs-continuing-healthcare-should-social-workers-be-involved/

  45. Barbara 6 months ago

    Hi again, this site is invaluable, so, a huge thank you for all the advice so far 🙂

    My battle for funding goes on, having been denied twice, plus, denied fastrack, with all the problems in between, not to mention pointless meetings, here we are preparing to face a panel at NHS England.

    At our last meeting 3 weeks ago, assessments were requested by the lead person from the panel, from an O/T, Speech and Language therapist and a dietician.

    The O/T spoke to me yesterday to say that she had seen mum again and thst she did not show any distress whilst being hoisted, which is one of the areas that was in question, she us returning next week to see mum receiving personal care, but, if mum is having a reasonably good day and foes not display the signs thst she usually does, things will go against us.

    How do we prove that she is not normally calm during these procedures?

    The staff have told the O/T how mum is as have we, but, they persist in carrying on.

    Mum’s weight has caused much concern by the hospital and the home, but, the lead of the panel insists thst she is stable.

    We feel as if we cannot win, all the powers thst be seem to band together and back each other up, any advice please, as yo how we can strengthen our case

    Many Thanks

    • Author
      Angela Sherman 6 months ago

      I’m glad it’s helpful, Barbara. Make sure you state lots of instances that show your mum’s needs – even if the OT happens to have seen her when she did not display these needs. I suspect you will have many more instances than the OT. See if you can get something in writing from the care staff perhaps? Also, being ‘stable’ doesn’t mean your mum should automatically be discounted for funding: http://caretobedifferent.co.uk/continuing-care-assessments-2-frequent-mistakes-part-2/

  46. Sue May 6 months ago

    My husband has been award CHC and I have been told that his care will be funded equally by social care and health. I do not really understand how this will affect his care. He is cared for at home and has advanced young onset frontal lobe dementia. I feel that his current care is not skilled sufficiently to care for his increasing needs particularly around feeding and skin care. I thought CHC involvement would help secure a standard of care that could meet his health needs. If this is not the case why award the funding or is there a point when he could be fully funded and the care upgraded to meet his increasing health needs. Are there different levels of funding for CHC? During the application process I was led to believe that CHC would help to deliver health care as opposed to general social care. To put my concern into context his main carer is just 19 and has worked in the care system for 4 weeks!

    • Author
      Angela Sherman 6 months ago

      I generally advice people to be suspicious when Joint Funding is suggested. Although there is something called Joint Funding, if your husband qualifies for CHC, then that should cover all his assessed care needs. Any joint funding involves the local authority, and of course that part of the care is means tested. If your husband scored highly enough in the assessment process to be eligible for CHC, I would question why the local authority is now involved at all. Receiving CHC funding does not, unfortunately, mean the quality of the care your husband receives will be any better; it just means he should be funded, and the NHS will almost certainly want to do that at the lowest possible cost. I can understand your concern about the main carer. The care that is provided must cover all assessed are needs, whatever those are. You’re correct that CHC delivers healthcare, as opposed to just social care, BUT when a person is eligible for CHC, the funding then covers healthcare AND social care needs.

    • Chris-G 5 months ago

      Sue May,
      I go with Angela on this. It seems wrong that a person can qualify for part of NHS CHC funding, when the eligibility criteria and the assessment is designed to establish beyond question, a ‘Primary Health Need’. And a further test is to establish if the totality of the care is beyond the legal remit of a council to provide. I have never understood how there can be any split in responsibilities. Unless of course there is collusion to enable some money saving for the NHS by recharging some of the cost via the county council.

  47. barbara 6 months ago

    Today mum was seen by the O/T, as part of the 3rd reassessment for CHC, as she generally becomes agitated during personal care.
    However, she did not on this ocaission become distressed and now we are told that this msy be due to the recent strokes which she has suffered, as they have caused deterioration in her ability to associate personal with fear.
    This area of scoring was a major issue of discrepancy, but, she does react frequently during this process, how on earth do we prove this now, the care home staff have told the assessors, but, without it being witnessed it is our word against theirs.

    How do we prove this, or should we just give up.

    Any help, or advice would be appreciated .

    • Author
      Angela Sherman 6 months ago

      Barbara – the care staff should be documenting everything in writing in the daily care notes. If they aren’t, you’ll need to take this up with them, as this is a serious omission. The daily care notes and the care plan are vital in the NHS Continuing Healthcare assessment process – and in looking after your mum safely, of course. The CHC assessors also should not simply ignore the inadequacy of the notes – especially if the care staff have effectively admitted that your mum gets agitated and yet it is not documented. The care home could put something in writing to the assessors perhaps.

  48. ANGIE 6 months ago

    My mum has severe dementia and currently in hospital due to an operation because of a fall. Insisted on CHC checklist and she scored 2 A’s – although we think should have been other A’s – although,still enough to generate a DST. Prior to this she was in a care home self funding having failed a DST a year ago. Waiting for result of appeal on that one. Now, no DST has been done in hospital as yet and they want to discharge her back to care home before doing it. Care home said they won’t do the DST but are happy to have her back. If she goes back to care home can we insist on DST? Discharge nurse said to me she won’t score enough anyway so no point! I have seen her hospital notes and doctor recorded her health condition as dementia, depression and osteoporosis. She scored high risk for falls and high risk for nutrition on their notes. Shall we insist DST done before discharge?

  49. Keeley 6 months ago

    I’m after some advice if possible. My Gran has recently been in hospital for a few weeks and had to have 2 operations, one to open up her blood vessels to allow better circulation and one to fix a fracture due to a fall as she is very unsteady on her feet. She is partially blind and diabetic (Insulin dependent) she is also virtually completely incontinent. The hospital had refused to release her to her own home due to her needing full time care and needed to go into a home. They referred my Gran to social services and family members were given a list of only 3 care homes to visit. She has now been placed in a home (Which doesn’t cater for her exact needs) which she has to pay £1300 per month. This has taken her DLA and all pensions she receives. Should she have been assessed for CHC? If so, how do we go about sorting this out as the home she is in is in my opinion is awful.
    Any help would be much appreciated, Thank you.

  50. Author
    Angela Sherman 6 months ago

    Continuing Healthcare assessment o discharge from hospital: http://caretobedifferent.co.uk/nhs-continuing-healthcare-and-hospital-discharge-part-1/

  51. Charlotte Walsh 5 months ago

    Hi i need a bit of advice if possible, My partners nan had a fall and broker hip 4 weeks ago she has since been in hospital as we have been informed she cannot return to her care home as she now needs nursing care and they dont have a bed for her, so we are in the process of finding a new nursing home for her, however my father in law is still having to pay her fees is this correct??
    thank you

  52. Julie 5 months ago

    I need a bit of advice. Mum has severe dementia and is currently in hospital under section 3 and we have been told by social services that sec 117 applies. Mum needs 24hr care and we are currently looking for a care home that meets her needs. We have been told by social services we will have to pay a top of fee of £125 per week – is this right? I was under the impression that that all her care home fees will be paid for?

    • Chris-G 5 months ago

      Julie it sounds dodgy. If your mum was kept on a mental ward in a more expensive area, would they get away with charging extra from her or you? I would ask for clarification.

    • Author
      Angela Sherman 5 months ago

      Julie – if your mum is under a section, then her care needs under that section (relevant to that section) should be funded. I’m not an expert on this specifically, but you may find this article helpful: http://caretobedifferent.co.uk/who-pays-for-care-when-someone-is-sectioned-2/

  53. Sally 5 months ago

    I am hoping for some guidance. I am severely disabled with MS (doubly incontinent, full hoist transfers). First checklist hurriedly done via telephone…negative. Redone in person….easily positive. Submitted to CCG on 20/1/16. I was admitted to residential rehab unit for the next 5 weeks the following day. Despite this being the ideal location for a MDT assessment, this was not done by CCG, even after several reminders. Physios had given up on me by week 3……’it is clear that you will never reach your goal’. Discharged back home to the care of my partner, who sadly physically abuses me with increasing frequency due to the stress of being my sole carer (not deliberate, but frequent injuries caused by ill tempered manhandling) The rehab unit was well aware of the home situation, and set up a ‘safeguarding’ thing. It is now 55 days since the CCG receive my checklist, and still I have no date for the MDT assessment, at which I will be represented by people who I have never even met, let alone know my needs. I am now at my wits end.

    • Chris-G 5 months ago

      Sally,
      Have you tried your local MS/Disability charity? And although it sounds as if NHS CHC should be awardable, are the local Adult Care Social Workers also aware of your home situation? They are under an obligation to provide assistance too. After all, if you are refused NHS CHC they will be expected to take over those aspects of your care that you cannot meet for yourself. Sorry you are getting bashed about a bit. By safeguarding thing did you mean the council social workers are already involved? They should have planned some reduction of the stress on your partner ASAP. Perhaps you need to chase them.

    • Author
      Angela Sherman 5 months ago

      Sally – if you have phone close to hand and if you ever feel in danger don’t hesitate to call 999. As well as keeping you safe, this may also ‘encourage’ the health and social care authorities to take your situation more seriously and also to look at the (seemingly clear) likelihood of ‘carer breakdown’. Regarding the delay in the in the CHC process, this is sadly not unusual. However, that doesn’t make it excusable. You may want to contact the Head of Adult Care at the local authority and stress that the local authority is almost certainly in an illegal position right now – by not having passed responsibility for your care to the NHS. I hope that helps.

  54. Keith 5 months ago

    Thank you for your website and e-book, they really are a haven of common sense advice in the confused world of NHS CHC.

    My mother is 96 and has been in a care home for almost 2 years. A CHC checklist was completed on discharge from hospital 2 years ago and she missed being put forward for full assessment by 1 score. Her care needs have increased since then and her doctor thinks that a CHC checklist should now be completed again.

    This has raised some worries about her being able to continue in her current care home if she gets the CHC funding. She is self-funding and very settled in her care home but it is more expensive than most in the area. I understand from your website that topping up CHC funding is not allowed.

    If CHC funding is agreed, would it cover the cost of her current care home? Does the NHS fix a cap on care home rates? Is it a matter of negotiation with the care home to accept the presumably lower rate paid by the NHS? Could you give me some advice on this please?

    • Author
      Angela Sherman 5 months ago

      Thank you for your very kind words, Keith. I’m so glad the website and book are helpful. Regarding your questions: There is no cap on CHC funding. It’s worth asking the current home whether they have – or have had – any residents with CHC funding. If they have, then the NHS can’t argue they won’t pay for that home. If the CHC payments are not enough for the care provider, this is something that the care provider and the NHS must resolve, because the CHC funding is an arrangement between those two parties. On what basis did the doctor think your mother wouldn’t be able to stay in the current home?

      • Keith 5 months ago

        Angela, thanks for your advice, it’s much appreciated. I guess it will be another discussion with the CCG and care home, if indeed we get to that point. We have a long way to go with first the checklist assessment and then the full DST assessment, etc., etc…

        I wasn’t very clear about where the topping-up issue came from; it wasn’t the doctor but only with her relatives – worrying about what we should be worrying about!

  55. Barbara 5 months ago

    Firstly, can I say yet again just how invaluable your book is. We have been through the ringer, as have many before us in trying to get the funding thst mum should be getting.

    Our case has now been referred to NHS England, but it had been months now with resolution meeting in between and we are no further forward.

    The CCG had said thst they would have all paperwork in by last Friday, in order for us to proceed, but, surprise surprise, on Wednesday they informed NHS England that they still did not have all of it and are looking at up to another couple of weeks.

    Today I got a phone call from the care home to let me know that the CCG had been in on Friday asking lots of questions about mum and took away her records for the period which they last assessed her.

    They already had this information as the period in question was only in December 2015.

    Is there anything I can do to stop all these needless delays? I also wonder if they are trying to backtrack and cover up all their mistakes.

    • Author
      Angela Sherman 5 months ago

      That’s so frustrating, Barbara. It wouldn’t surprise me if they are trying to backtrack to cover up mistakes. I’ve seen that before. One option is to go to the press – or at least tell the CHC team you are going to do so – and then see how quickly they get their act together. Just a thought.

  56. John Mallett 5 months ago

    My partner Jean suffers from Parkinson’s and dimentia, she is unable to do anything for herself though she can eat her food but takes a long time to do so, I am listed as Jean’s full time carer, my query is regarding a Hernia operation that I’m due to have, the hospital tells me that as they have informed me I must not lift Jean or anything for six weeks they have to take over caring for her and the NHS has to pay for respite care. Social Services tell me this is not the case as we do have over the financial limit of £23,000. Could you please advise me who is correct. Thanks John

    • Author
      Angela Sherman 5 months ago

      Does Jean receive Continuing Healthcare funding already, John? If she does, the NHS should continue to cover all costs of care while you’re incapacitated. If she doesn’t, then the first question to ask is whether she should do. The local authority/Social Services have (rather typically) asked about money first; but what should come first is whether or not Jean’s care needs are beyond the local authority’s legal remit. if they are, the NHS must pay – and Jean’s money shouldn’t come into this at all. (Also, remember at all times that it is only Jean’s money that should ever be means tested, and only her share of any joint money/assets. Your own money/assets should not be touched. But this is only relevant if she does genuinely have to pay for her care.) When you say “they have to take over caring for her”, who is ‘they’ in this context?

  57. John Mallett 5 months ago

    Hi Angela Thanks for your reply. The lady was referring to the NHS when she said they have to care for Jean. No, Jean does not receive Continuing Healthcare funding. I have asked the question whether she should receive funding as you suggested and after several phone calls and mislaid information the Social Services have agreed to do an assessment of Jean’s care needs. Unfortunately the assessment will not happen until after Jean has been into respite care so she will have paid for this herself but hopefully will be able to claim the costs back.

    • Author
      Angela Sherman 5 months ago

      If you can get the Checklist done prior to the respite care, that would be good – although I realise that may not be possible. Be sure it’s the Checklist assessment form that is used (for NHS Continuing Healthcare). You are entitled to be there at the assessment and input information and views. It’s always a good idea to be there, to make sure things don’t get ‘overlooked’. If Jean gets a positive result from the Checklist, she should then be referred for a full assessment for NHS Continuing Healthcare. If she’s successful in that, funding will be backdated to day 29 after the completed Checklist is received by the NHS, so the sooner it can be done the better.

  58. kim 5 months ago

    Hi, I have an 83 year old mother and it has taken us 3 years or more to get a diagnosis of dementia. She has now had to go into a care home (which she is fully funding) after a six week spell in hospital due to a severe episode of confusion and a trial period of six weeks with a reablement team at home which only lasted 2 weeks as it left my mother at risk. She has other health issues. The family are very upset and are in the process of complaining to the health board if she had been diagnosed earlier she would have been able to have medication and would still have been able to remain in her home. We think the NHS should be paying the fees.

    • Author
      Angela Sherman 5 months ago

      Kim – if your mother is in England, then she should have been assessed for NHS Continuing Healthcare before she was discharged from hospital. If she hasn’t been assessed, make sure this is done as soon as possible. This may help: http://caretobedifferent.co.uk/getting-the-nhs-continuing-healthcare-assessment-process-started/

      • Kim 5 months ago

        Hi Angela, she is in Wales. I am in the process of obtaining medical documents etc via the health board as I have a Lasting Power of Attorney health and welfare. Do you suggest to get an assessment for NHS CHC next. Who is the best proffessional to carry out this as have already mentioned this to social worker who said Mum didnt come in the criteria.
        Regards and thanks
        Kim

  59. Barbara 5 months ago

    I am continuing to battle on to get this funding for my mum, but, it is like 1 step forward and 3 back.
    I have a question, if anybody could help that would be great.
    I hold an enduring power of attorney for my mum, and I am trying to obtain all the information that the CCG and the CHC team are sending to NHS England in support of their continued refusal to fund mum.
    I am being told that I need a separate power of attorney for health and welfare and without it I cannot access the information that I am asking for.

    I want to make sure that the CCG and the CHC are being above board and not changing anything that they have previously used, as they have made untold mistakes so far.

    I obviously cannot now obtain this other power of attorney as mum has no mental capacity, do you know whether I could get the information via the freedom of information act.

    Many Thanks

  60. Laurie Metcalfe 5 months ago

    Hallo

    My father has been told that he will only receive payment from the NHS for his nursing needs despite scoring Severe in both mobility and nutrition, together with other nursing needs, e.g.- sores. He has been told he will need to pay the fees to stay in the nursing home. This does not appear to be correct from what I have read. Can you help?

    • Author
      Angela Sherman 5 months ago

      You’re right in your suspicion, Laurie – that’s not correct at all. You need to challenge this straight away and quote pages 14-15 of the Decision Support Tool document (the eligibility criteria).

  61. Evelyn 5 months ago

    My mother died in 2013 aged 96. Up until 2012 she lived alone in sheltered accommodation which she partially owned. She had been diagnosed with dementia was partially sighted and deaf, she was admitted to hospital after a fall, and because I did not hold power of attorney over her welfare, social services decided she should be placed in a care home. N.H.S. Continuing Healthcare was never mentioned at that time. I later discovered this and made a claim, which has been turned down because mother did not have primary care needs and was settled. Scoring – they based their decision on what care notes that could be located, but many are missing both from the care home and various bodies within the N.H.S. I would greatly appreciate any advice on how to proceed.

  62. Jane 5 months ago

    Hello
    My Mum broke her hip 8 weeks ago, spent 2 weeks in hospital and was told 6 weeks in respite, this time is up now and she is no further on, they only give her physio twice a week and the rest of the time she just sits in her chair. My mother is now incontinent since going in the home but wasnt before she left the hospital, , twice they have had d&v in the home she resides in and we where not allowed to visit. We are desperate to get her home but because of her incontinence its not possible, what kind of help would we be able to receive and what funding to help us as we all work during the day and of course on a night we would be worried about her on her own?

  63. Helen 5 months ago

    Hello,

    My mother who is over 100 but mentally sound went into hospital last November with an infection. Until that point she had been living at home with carers coming in for half an hour mornings and evenings. She was eventually discharged from hospital in February. Prior to discharge she was assessed as needing 24 hour nursing care but, following a reasonably fair assessment, does not qualify for CHC. She is now in a care/nursing home and the NHS are paying the care home £112 a week for the nursing care, she is self funding the rest. It is not apparent to me what nursing care she is receiving. She is blind, cannot stand on her own, needs help to get to the loo and needs to be fed all of which tasks appear to be carried out by carers not qualified nurses. She didn’t have pressure sores when she went in to the care home but I believe she does now. The only medication she takes is one asprin per day. She is unhappy and wants to go home. She could just about afford to fund a live in carer but not a qualified nurse. If that carer is not a qualified nurse will the NHS continue to pay towards her care if she goes home?

    • Author
      Angela Sherman 4 months ago

      Helen – the Funded Nursing Care payment of £112/wk is only for people in nursing homes, however full Continuing Healthcare (CHC) is available regardless of where a person is based, i.e. the person can be at home, in an ‘ordinary’ care home or in a nursing home. You can ask for your mother to be reassessed for CHC if her needs change, and you can appeal any aspect of the previous CHC assessment you may have been unhappy about. Nursing care does not necessarily need to be delivered by people with nursing qualifications.

  64. Author
    Angela Sherman 5 months ago

    Helen – Continuing Healthcare funding is not dependent on where a person physically lives (i.e. in a care home, at home or elsewhere), nor is it dependent on the qualifications of the person delivering the care.

  65. Sue Collins 4 months ago

    Just wanted to share my little bit of good news with you. I have been trying to get funding for my mother since 2010 and I am sure I dont need to tell you how hard this process is. I have fought to within an inch of my life still to be told that my mother only has social care needs, despite having Alzheimer’s and little or no cognition, doubly incontinent and suffers from a bad chest. Late last year I decided enough was enough and took my case to the Ombudsman as I have been treat appallingly by the CCG and I know that they haven’t followed The National Framework along with numerous other issues. The Ombudsman came back to me to clarify certain points of my complaint and to simplify it I sat down and put together a timeline of events and any key issues I felt needed addressing. I spoke to the Ombudsman again a couple of days ago and they agreed that the CCG have not followed procedure and have instructed them to send the case to an IRP which has never been offered to me. Its still a long way to go but I am over the moon that someone is one my side finally. DONT EVER GIVE UP!!!

    • Author
      Angela Sherman 4 months ago

      Thanks for your comment, Sue. That sounds positive. Wishing you well with the next stages.

  66. JohnMallett 4 months ago

    Hi. A nurse came today and did a checklist for Jean, she only scored one A and two B’s the rest were all C’s, we didn’t totally agree with her as Jean is unable to do anything for herself apart from eating, but the nurse seemed quite honest and fair in how she saw things. Will this qualify Jean for an assessment? Also the nurse phoned later to ask if Jean had over £23,000, is this all correct? John

  67. sarah madden 4 months ago

    My aunty died in 2007 and I’ve just gone through the assessment. They turned us down saying my aunty didn’t have a primary health need. The panel confimed that health and social care had a shared responsibility to meet the care needs of my aunty. Generally, health needs would be met by local social services and the funded nursing care contribution for those people in nursing home accommodation. The CCG has ratified this decision. My aunty only lived in the nursing home for 1 yr befor she passed away. I’ve only got till 18 may to appeal their decision. I think my aunty did fit some of the critera and has been under marked. I dont think risk assessments had been done but I’ve no proof. She was blind, had falls, bed sores, skin conditions, Alzheimer’s where she would hit other patents, be confused, etc. She had no appetite. She had to be turned in bed and hoisted at the end. I would like to know how they can assess some one who’s dead and who they didn’t know?

  68. Barbara 4 months ago

    Hi, we have been fighting for CHC funding since Feb 2015 and keep being declined, even when mum was returned to her care home in Jan 2016, following a stroke, followed by 2 more after her discharge, she was then found on the floor having fallen out of bed, and had been sick and was choking on vomit.
    It was only then that a Checklist was carried out, without our knowledge I may add, and despite repeatedly telling the nurses and the CHC lead, that mum’s health was deteriorating rapidly and she was sent back as end of life care, we were once again ignored and told that she did not qualify.
    Last Friday mum was found unresponsive in bed, rushed to hospital and now, we are told that she is dying nothing can be done, her chances of recovery are extremely slim.

    We are going to continue to fight this, as we are waiting for a date to attend a panel meeting with the IRP, but I am so angry that these people have got it so wrong.

    As mum is in hospital and cannot be moved, the hospital have said that she cannot be fast tracked until she is discharged again back to the home for end of life care again, but that may not happen as she is so ill, she may have to end her days in hospital.

    Is there any advice thst you can give about this.

    Many Thanks

    • Author
      Angela Sherman 4 months ago

      How very distressing, Barbara. If your mum is still paying care fees for her care home place while she is in hospital, then I can see no reason why she should not be Fast Tracked now. She may not need to be paying those fees. Given her current state, it seems unlikely she is within the local authority legal remit for care.

  69. Keith 4 months ago

    I represented my mother at her DST multidisciplinary meeting yesterday – and was very glad I followed your advice and spent hours swotting up on the Framework beforehand…

    I had some complains about not being able to see some of the documentation used by the meeting (the nursing assessment was on the district nurse’s laptop, etc.), and I registered my disagreement with the score on one of the domains, but overall it seemed to me a professional assessment and I was given the opportunity to contribute my views – and a couple of the scores were higher than I had been aiming for.

    We ended up with 1 Severe, 3 Highs, 3 Moderate, 1 Low and 3 No Needs. (The Low was the one I disagreed with as I thought should be a Moderate, as incidentally did the District Nurse on the CHC Checklist 2 weeks ago.)

    I was allowed to stay in the meeting during the decision making part of the meeting and the coordinator/assessor said her view was that we should have NHS Funded Nursing Care but not NHS CHC. The other MDT members (Social Worker, District Nurse & Senior Care Home Carer) all agreed without much comment

    I objected and asked for a detailed explanation of why this decision had been made and, to give the assessor her due, she spent a long time explaining how she had come to the decision, the essence of which seemed to be:- given that we have 1 Severe, then the High and Moderate domains are then considered for complexity, frequency, unpredictability, and then a professional judgement made.

    I had read the Framework (Page 29 Para 88) which states that “Professional judgement should be exercised… to ensure overall need is correctly determined” and “The tool is to aid decision making in terms of whether the nature, complexity, intensity or unpredictability of a person’s needs are… a primary health need.”. The Practice Guidance (Page 76 para33.1f) also addresses the decision making process but seems to merely restate what is in Para 88 without expanding on it.

    This is where I have a problem. I understand something about the scoring system and was able to argue our case successfully with that, but when it came to the decision, I didn’t have the understanding or “professional” knowledge to challenge the outcome.

    I am now wondering if we should appeal but am not sure how to argue the decision and I can’t find any other material to learn about the decision making process. After reading over 200 pages of documentation I am left with no real explanation of how the most important aspect of the process works! If the decision really is such a “black art” how do we get to understand it in order to either agree with it or to challenge it?

    Any thoughts or pointers to material to read would be very gratefully received!

    • Author
      Angela Sherman 4 months ago

      Keith – a few points: I’m glad you were well prepared. That really is essential in such assessments.

      It’s not unusual for the social worker and others in an assessment meeting to simply agree with the NHS lead assessor, without offering proactive views; and yet it is vital that anyone from the local authority (i.e. the social worker) is proactive. The process seems open to subjective interpretation by assessors, as you have discovered, and this is why the local authority must play it’s part in pushing the responsibility for funding onto the NHS if the care needs are beyond their own legal remit: http://caretobedifferent.co.uk/nhs-continuing-healthcare-should-social-workers-be-involved/. You’ll need to pick apart the notes in the Decision Support Tool, and pull together your comments and observations about everything you feel was done incorrectly during the process. This may help: http://caretobedifferent.co.uk/appealing-a-continuing-care-funding-decision/

  70. Barbara 4 months ago

    Can anybody tell me what the London Heath Needs Assessment is and how I can get a copy, apparently, one had been requested from our CCG by NHS England as part of the appeal process.
    I have tried to find it on the web, but, cannot access it.

    Thank you

    • Author
      Angela Sherman 4 months ago

      It’s a form some London health authorities, including hospitals, use to record health needs. However it doesn’t do away with the need to use the official Continuing Healthcare (CHC)forms in CHC assessments – the Checklist, the Decision Support Tool or the Fast Track.

  71. Barbara 4 months ago

    Hi, so much has happened over this last week, sadly my mum died on Monday, but, we are continuing to fight our battle.
    We have now been given a date in July to appear before NHS England’s appeal panel.
    The CHC yesterday approached the care home for yet more information and records, which as I understand it is because the IRP are questioning them on why there are major gaps in the information they have provided.

    Mum died as a result of aspirational pneumonia, she had been on oxygen both via a mask over her mouth and tube in her nose for 24 hours a day for all 10 days thst she was in the hospital before she died.
    Yet less than 10 weeks ago, we had a meeting with the lead CHC and the district nurses who said that mum was at low risk of aspirating and was not at end of life and did not have a rapidly deteriorating state if health, this was in complete contradiction to the hospitals diagnosis following 3 strokes which mum sustained in January.

    I am devastated thst mum has gone, watching her die over these last 10 days was truly dreadful I am also so so angry thst these so called professionals got it so wrong.

    I hope justice prevails in July, and I am now raising a complaint against those who made the decision that mum was not st risk and was not at end of life.

    • Author
      Angela Sherman 4 months ago

      So sad to hear about your mum Barbara. An extremely difficult time for you, I’m sure. What’s happened in your mum’s case shows how flawed CHC assessments can be.

  72. Keith 4 months ago

    Thanks for your help so far with your comments above. I am doing some research on the points I can use to appeal the refusal of CHC funding for my mother. Among other things, I think I have grounds on the basis of errors in the procedures regarding the assessment documentation, and I would really appreciate some advice.

    A Nursing Assessment was done at the same time as the Checklist and was referred to at the DST meeting (I asked for a copy after the Checklist meeting and before and during the DST meeting but it was refused). The other input to the meeting was via information held on the District Nurse’s laptop and oral statements from the Care Home Coordinator, a Social Worker and myself.

    Reading the Framework, I had thought that a Multidisciplinary Assessment should be completed prior to the DST meeting and then used to inform completion of the DST. It would then be in such a format that it could be used to assist with planning my mother’s future care needs.

    Am I correct in my reading of the Framework? Should a written Multidisciplinary Assessment be produced before the meeting or is it OK to be done mainly orally as part of the DST meeting? Do I have grounds for appeal on the basis that insufficient information was available to make an informed decision?

    Any help is appreciated!

    • Author
      Angela Sherman 4 months ago

      If you hold a power of attorney for your mother, Keith, you should be given access to the nursing assessment and all assessment notes relevant to the Continuing Healthcare process. The members of the multidisciplinary team (MDT) should have knowledge of your mother and should have gathered a whole range of evidence to help them discuss and review the 12 care domains in the Decision Support Tool (DST) and to be able to make a funding recommendation – taking into account input from all at the actual assessment meeting too, including you. Which page/paragraph of the National Framework are you referring to when you mention a ‘written MDT assessment’?

      • Keith 4 months ago

        Thanks for your reply, Yes I do have a Power of Attorney but still couldn’t get a copy of the Nursing Assessment before the DST meeting!

        In our case the DST meeting was poorly informed and I think the is why – the following I think says I should be expecting an assessment to be done prior to the DST meeting – and that I should get a copy of it before the meeting.

        Firstly on the DST form, the second box on the form asks for comments on the “Individual’s view of their care needs and whether they consider that the multidisciplinary assessment accurately reflects these”.

        And from the Framework:-
        The Decision Support Tool should be used following a comprehensive multidisciplinary assessment… Para 79
        The multidisciplinary assessment that informs completion of the Decision Support Tool … Para 80
        The Decision Support Tool is not an assessment in itself… Para 81
        The multidisciplinary assessment should be in such a format that can also be used to assist the CCG and LA to meet care needs regardless of eligibility for NHS continuing healthcare. Para 82

        And in the Practice Guidance section PG28.1 lists the elements of a good assessment, and PG29 list the potential sources of information input to the assessment.

        I would appreciate your views on this,
        thanks

        • Author
          Angela Sherman 3 months ago

          Hi Keith – sorry for the late reply. The multidisciplinary team (MDT) assessment is the actual meeting at which the Decision Support Tool (DST) is completed – and to which you should be invited. Does that help?

  73. gregory flattery 4 months ago

    My mother is receiving funding for day and night care at home, funded by CHC. The same care agency is providing both day and night care, I have been informed that under the local Clinical Commissioning Group (CCG) rules the same care agency must provide the day and night care, you are not allowed two different care agencies
    to provide day care and the another night care. If you are not satisfied with night care element of the care package, you would have to change the agency to provide for both day and night care. What is the rationale behind this rule?

    • Author
      Angela Sherman 4 months ago

      It’s difficult to say at this point. It would be worth asking the CCG for a written copy of the ‘rules’ they’ve drafted about this. If they can’t produce anything in black and white, I would be suspicious of their statement.

  74. Fiona 4 months ago

    Hi, sadly my older brother attempted suicide last Sept and was found by his neighbours. He has survived the incident however, after months of tests, CT and MRI scans, the outcome was brain damage and a mental capacity assessment of 0%. He is now 24/7 reliant on care and will no longer live independently again. He was assessed and accepted for full CHC funding and I finally got him moved to a care home local to me (he lived in Wales). I am in the process of going through the court of protection application to become his deputy as he is unable to communicate, move, sign anything himself. I have been chasing the hospital for his medical assessment (via a solicitor as I am unable to request this myself!!) so this is holding up the process. I have just had the visit from the DWP representative meeting at the care home to assess my brother’s abilities and to take down all relevant information according to his financial status/assets. He doesn’t have much saved but he does own his own house, not of a huge value in Wales but it is his. The DWP representative told me that once the house is sold the NHS will require the proceeds to be paid back to cover his care retrospectively. Is this true once he has been given full CHC funding? I am at present, unable to do anything with the property other than pay the ongoing bills (as I cannot cancel these services until I am legal deputy). No one is living in the house and it is 2.5 hours away from where I live so local neighbours are looking after it for me/him. So I am already paying bills and solicitors fees to help try and sort out his affairs. I’d like to know if the proceeds from the property in future will be taken by the relevant authorities. Thanks for any advice in advance.

    • Author
      Angela Sherman 4 months ago

      Fiona – if your brother is receiving Continuing Healthcare (CHC) funding, then he doesn’t have to pay anything – or pay anything back – for the period of time he’s receiving that funding. It raises the question why the DWP are asking about his finances; if he receives CHC, his money and assets are irrelevant. Is your brother now in England? Keep in mind that all the information on the Care To Be Different website is for the CHC system in England, rather than Wales. You may find this AgeCymru factsheet helpful for Wales, though: http://www.ageuk.org.uk/Global/Age-Cymru/Factsheets%20and%20information%20guides/FS20w.pdf?dtrk=true

      • fiona 4 months ago

        Thank you Angela for confirming. He is being funded by the Wales health authority. Once the CHC funding was confirmed I was required to research/find a nursing home suitable. I did this independently as it was too far for the social worker or discharge nurse to be involved directly other than on the phone with the homes i suggested. He stayed in hospital whilst I did this as it took some time and I was no medical expert when needing to explain his condition. The hospital wanted to move him to a home in Wales as a temporary measure but as I was close to finding and securing somewhere local to me, fortunately he didn’t need to be moved twice. I’m all he has and thus I needed him moved near me so that I can see him on a regular basis so he knows he is not alone. I’ve read the document you attached and it is most helpful. I belive the relevant LHBs (Wales and England) were involved in discussions when making the funding decision. This has helped me understand that should the DWP mention assets again in relation to obtaining any proceeds I can at least be equipped to challenge it. Thank you

  75. Mark sullivan 4 months ago

    My mother went into hospital under a section 2. She has vascular dementia and constantly hears voices in her head and is very paranoid. She had harrased the neighbours at home and attacked one prior to being sectioned. Her section 2 ran out and they are now putting her on a deprivation of liberty order and keeping her in hospital.

    They said she will never be allowed home and will have to go to an EMI nursing home. Continuing Healthcare (CHC) assesment has never been mentioned and none of the hospital staff seem to know anything. She dosn’t have a social worker. Would she be eligible for CHC?

  76. Jacki 4 months ago

    Can anyone help me please. Unfortunately, my mother died on 18/03/2016 and both my sister and I have felt for the past 2 and half years that my mother should not have been made to pay for her own care.
    When she was alive her independent living reached a crisis point and due to a number of risks she was admitted to a local Nursing Home (mother had vascular dementia). She settled very well and after a full review it was deemed that mum should stay in the home permanently. She was not given a choice in the matter and it had also been decided that no further care could be given to her at home to keep her safe as she begun wandering in the night and started knocking on her neighbours doors asking for help to get her home! So as a consequence due to the reasons I have said she was admitted on a permanent basis.
    At this point mum was handed over to the Social Workers to sort out, and mum was not even considered for CHC she was immediately assessed as a person who could pay for her own care. During this period her private and her old age pension were taken off her to pay towards her fees as she could not be forced to sell her home as it was not bricks and mortar she owned a Park Home on a permanent site. We asked if we could rent her property out and the Park owner said no the only people who could move in rent free was one of her next of kin. We could not do this and after a year of no one living in her home we had no alternative but to sell the property at a loss. At which point we then became liable for mums fees and have paid ever since.
    My point is no one even talked about her primary health care needs, the only thing we were told at the time was she would not meet CHC as her nursing care would not meet the criteria. I do feel it is very much a post code lottery as to whether our relatives get this CHC and again feel why should she have been made to pay when circumstances dictated that she could no longer live on her own surely this is a major primary health need??
    Her Social Worker did think that mum may meet the CHC and arranged after 6 months of waiting for mum to be assessed, although I do have to say the manager at the home kept saying she did not think mum would get it. When she was assessed she was declined, even though she was doubly incontinent, was beginning to lose the ability to eat on her own as was actually at risk of choking on her food, had no idea who we were and was in congestive heart failure and was completely unable to dress or undress herself.
    I am seriously considering trying to get her fees back retrospectively, but have no clue how to do this or who to approach to help us. Can anyone help please?
    Thank you

    • Author
      Angela Sherman 4 months ago

      Jacki – I imagine it’s been a difficult time. A few points: not being able to live on her own does not automatically make someone eligible for full NHS funding. Instead it’s about the whole picture of actual day-to-day care needs. Sadly it’s not unusual for people within the care system to declare that a person is unlikely to be eligible – before an assessment has even been carried out. It’s quite wrong. Write to the Continuing Healthcare team at the Clinical Commissioning Group – NHS – where your mother was based and say that you believe she was wrongly charged for care and that you would like a review.

  77. Chris 4 months ago

    I argued against a refusal for CHC and recently had the CHC appeal found “Agreed Eligible” by the local MDT team.
    They now request the copy of the care home invoices my father had to pay to reimburse the care fees. Fair enough.
    But they now ask for evidence of income, pensions or retained benefits by the DWP. I believe that CHC / Disability Living Allowance (DLA) funding was not affected if care was by a qualified nurse(s), although, after my father’s death we received a repayment claim of DLA from the DWP which we repaid. This was more or month less the period of the CHC funding.
    He also had income of state pension, war pension and a private pension as income. I dont believe these are anything related to CHC funding repayments.

    I cannot find any info regarding this. Can anybody answer:
    1. Benefits means tested in conjuction with CHC?
    2. Does care have to be solely by nurses to get DLA under CHC? Registered nurses gave his medical care and care assistants the personal care, feeding, bed changing, walking etc but CHC isn’t for personal care. Should the DLA been repaid?
    3. I assume I just need to show the care home invoices and repaid DLA to get my reimbursement? Nothing else needs to be considered.

  78. Mel 4 months ago

    My mum lives in a residential care home; she has been assessed for CHC and we are waiting for a decision. The care home manager has advised that if the result is positive she will need to move but my understanding is that she could still remain in the residential setting she is at currently if they can meet her needs (which are not nursing). Also at the point of discharge from hospital 18 months ago no one advised that a CHC checklist/assessment could be done. The hospital and Social Worker advised that I would need to find Mum a residential setting as she was assessed to be not able to live independently at home (which I did agree with due to dementia and risk of falls). I have subsequently had to pay a top up fee and Mum contributes via pension. If the CHC assessment is agreed can I ask why it was not done 18 months ago?
    Thanks

  79. Tony 4 months ago

    Well today we had the CHC assessment. The Multidisciplinary Team (MDT) consisted of the assessor, social worker, ward sister and me. Do I need to say that the recommendation is that my mum isn’t eligible? I’m going to assume this was done in a fair and open manner. Just to recap my mother (87) has the following conditions:
    Type 1 diabetic for 65 years (Blood sugar very high usually in the low or high 20s).
    Currently has either delirium or vascular dementia or both. She’s a little better at the moment but poor cognition generally.
    Osteoarthritis
    Poor mobility (High)
    Doubly incontinent at night
    Blind in one eye, partially sighted in the other. Registered blind.
    Plus a few other things.
    We went through the 11 domains but nothing was included in 12. I suggested that her sight, blood pressure, and other things be included but although I think my comments were recorded I was told this had all been noted in the other 11.
    I’m probably being naïve here but I think of it this way. Prior to hospitalisation my mother looked after herself at home. The only reason she requires a nursing home is (mainly) because she cannot look after her own health needs anymore because of the dementia/delirium problem. These are surely primarily health needs not social needs? I don’t consider the compartmentalisation of her needs reflect the overall situation.
    I was told that although her blood sugar was very high it was nonetheless stable and predictable. I had considered her diabetes situation would be considered at least severe but it only got to High. Her cognition has improved over the previous 3 weeks so this too is now considered stable. I have said I intend to appeal but do I have grounds? They will include a list I had prepared of her various conditions with the DST but I can’t think it will overturn their recommendations.
    We will be recommended for the £112 nursing care which I believe will mean she’ll be paying in the region of £500 per week. Reasonable compared to many homes I think. I wonder if it’s worth using a solicitor or whether the cost will outweigh the benefit.
    Any advice would be most welcome.

  80. Adrian Coggins 4 months ago

    My Mum has been in a care home for almost 3 months after a serious stroke. We found out about NHS Continuing Healthcare (CHC0 on the internet so asked Mum’s GP, Social worker and care home about getting an assessment. All we were told was a big fat NO!!! and that we would be wasting our time as she would not qualify. Also none of these professionals were qualified to undertake the stage 1 checklist!
    We contacted the local Clinical Commissioning Group (CCG) who were not helpful either.
    We have found out today that a Funded Nursing Care (FNC) assessment was carried out last week at the home without our knowledge and without any member of the staff in attendance. They also said that while they were at the home they also undertook the NHS CHC assessment.
    The senior nurse at the home said that nobody was with mum at the time and they were not aware of the NHS CHC assessment being completed.
    We are furious that we as a family were not informed as we would have been at the assessment.
    Can you advise us what we should do next?
    Kind regards
    Adrian

    • Author
      Angela Sherman 3 months ago

      Adrian – it’s very common for people working in health and social care – including assessors – to say things like “It’s a waste of time” or “You won’t get it” or “It’s not worth it” and other similar nonsense. Not only is this quite wrong – because the only way to know is for the assessment to be done – but it also reveals the mindset and (possibly) lack of training and awareness of the person who is saying it. A Checklist can be carried out by any health or social care professional who is trained to do so and who understand the care needs of the person being assessed. There is no assessment for FNC as such; any decision about FNC can only be made AFTER a Continuing Healthcare assessment. This may help: http://caretobedifferent.co.uk/how-is-registered-nursing-care-contribution-rncc-assessed/ The person who said they did both assessments at the same time doesn’t know what they’re talking about. Make a strong complaint to the CHC team; copy it to the Head of the CCG; demand a repeat assessment, as the CHC team has ignored so many guidelines here. You could also write to the Head of Adult Care at the local authority and let them know that the NHS has illegally passed responsibility for care to the local authority by failing to carry out the proper Continuing Healthcare assessment process. This means the local authority is now in a potentially illegal position. Read the National Framework guidelines and pick out every single failing and put this together as a catalogue of errors. This may also help as it gives you links to the main guidelines: http://caretobedifferent.co.uk/continuing-healthcare-assessment-guidelines/

    • Chris 3 months ago

      Adrian, yes read the guidelines, they are very specific and will help you to explore the failures in procedure that has not been undertaken correctly.
      I had never heard of CHC until the hospital carried out an assessment on my father in my absence. They now wished they did not alert me of the CHC funding because I have been harassing them at every twist and turn since January 2015 and reminding them of their failures. I kept them in a meeting for 4 hours once!
      It is a long tedious battle but you can do it. But bear in mind there has to be at least 3 care domains with High or 1 Priority to get the funding, so it may seem that a person has had a major health issue but it doesnt impact on the overal CHC assessment. The local CHC team to me have the habit of using an assessment form with the Priority level missing from the form, so it makes it impossible to get a Priority Level. Very sneaky.
      Staff are conditioned to believe it is impossible to get unless at end of life care. My father had a nurse assigned to him on ward and she told me “he wont get CHC funding”. I insisted an assessment be carried out and it was. Ironically, the nurse had input at the meeting and could not have been more truthful about his needs, which actually helped in funding being awarded.
      Get all records apertaining to health- GP Records (who will resist), Community Matron Assessment/Risk Assessment if they visited, Carers records, Nursing home records, ambulance attendance sheets, psychriatric assessments by the Social Services Mental Health team etc etc. Effectively build a case to present at the CHC Assessment or Funding Appeal.
      In the end we got all care fees paid under CHC, 11 months in a BUPA home at £1100 a week. Its a long battle though with lots of hurdles. Good luck.

      • Author
        Angela Sherman 3 months ago

        Good advice, Chris. Just to clarify regarding the actual scoring, though: Take a look at pages 14-15 of the Decision Support Tool: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213139/Decision-Support-Tool-for-NHS-Continuing-Healthcare.pdf. It says:
        “A clear recommendation of eligibility to NHS continuing healthcare would be expected in each of the following cases:
        • A level of priority needs in any one of the four domains that carry this level.
        • A total of two or more incidences of identified severe needs across all care domains.
        Where there is:
        • one domain recorded as severe, together with needs in a number of other domains, or
        • a number of domains with high and/or moderate needs,
        …this may also, depending on the combination of needs, indicate a primary health need.”
        I have known people receive CHC funding without any Severe scores, just with High and Moderate. Keep going if you can.

  81. Kathy 3 months ago

    My husband had a stroke in January 2016. He was transferred to a stroke rehabilitation centre in March 2016. He is double incontinent, paralysed down his right side, cannot speak and is fed through a peg. Today I was informed by his consultant that they are considering discharging him home because in their opinion he has the mental capacity to make this decision and under the current law are obliged to carryout his wishes. 1 Week ago I was told to look for a nursing home for him as they didn’t feel they was anything further they could do for him and he would need 24 hour care. When I found an acceptable nursing home I was told by his social worker that he would not be assessed for CHC until he had been transferred to the nursing home. The nursing home said they wouldn’t accept him until they knew who would be responsible for payment. I informed his social worker who said that assessment would not be possible until after discharge and that any money paid by the family would be refunded once he had been assessed. My argument is, what if he doesn’t get full CHC funding and I cannot afford to pay for his care, what happens then? He has saving od £26,000 and joint ownership of our home.

  82. Terry Lawrence 3 months ago

    Decision Support Tool Assessment:
    My mother died in 2014. She was 101 and had been bed bound and completely helpless for the last 16 months of her life. Despite asking for a continuing healthcare (CHC) assessment on several occasions, the Nursing Home rebuffed our requests telling us “it’s not worth it, you won’t get anywhere until your money runs out” etc. Finally (4 months before she died) my mother’s money ran out and she was assessed for CHC.
    Since her death I have applied for retrospective CHC for the last 16 months of her life. A Needs Portrayal Document was completed and put before a Multidisciplinary Team who applied the Decision Support Tool assessing her to be HIGH need in 2 domains, MODERATE need in 4 domains and LOW ned in 3 domains. My mother was refused retrospective CHC funding. I am disputing the assessed need in 4 of the care domains.
    My questions are:
    1. What should be the membership of the Multidisciplinary Team (MDT)?? The MDT assessing my mother’s case consisted of 2 people, a senior social worker and an operations manager. Should the MDT have wider representation than this?
    2. The family would challenge the MDT assessment. Applying the Decision Support Tool criteria, we would assess my mother as HIGH need in 3 domains; MODERATE need in 5 domains and LOW need in one domain.
    3. Is it worth appealing against the MDG decision? I don’t want to waste everyone’s time; but feel the decision is unjust and does not reflect my mother’s condition.
    4. If it is worth appealing, where can I get help and advice about this?
    5. The ‘system’ seems deliberately set up to deny impartiality and fairness to the vulnerable elderly in care homes, and their relatives trying to get justice on their behalf – how can we get a critical mass of people who are concerned about this, whether through their own experiences or socio-political concern, to bring about a change in the Law?
    6. What happened to the Dilnott Committee’s sensible advice? How can it be revisited and become legislation?

    • Author
      Angela Sherman 3 months ago

      Terry – the nursing home’s statement that it’s not worth it and that it depends on a person own money shows the depressing and fundamental lack of understand they have of Continuing Healthcare. There is also a conflict of interests when it comes to care homes, as they receive less money from the NHS in Continuing Healthcare than they do if a person continues to pay for themselves. Your questions: 1) Where was the operations manager from? The NHS? 2+3+4) I can’t say whether your case holds up or not without looking at it in depth. I do know of people who have received the funding without any Severe scores, but not many. However, follow the tips in this article about appeals: http://caretobedifferent.co.uk/appealing-a-continuing-care-funding-decision/ The NHS must send you information about the appeal system. 5) Many people would echo your sentiments here. It’s not really the law that needs changing though – it’s the maladministration in the assessment process and the failings in the interpretation of eligibility criteria. You may find this video from Prof Luke Clements helpful: https://www.youtube.com/watch?v=HrpFLLwGqhs If you’re on our mailing list, you may have seen our recent note about the National Audit Office too. Many people are sending complaints about CHC. 6) Good question! What a waste of public money that seems to have been.

  83. Hayley 3 months ago

    My Mother with ms is living in a nursing home cc funded, but we are having to top up £300 a week. From what I have read this seems completely unreasonable. How do I get cc to agree to pay the extra £300 as they said they would only pay up to £1200?

    • Author
      Angela Sherman 3 months ago

      Hayley – do you mean that your mother is funded by the local authority? If so, the first question to ask them, before anything to do with top ups, is whether she has been assessed for NHS Continuing Healthcare funding. If she hasn’t, this should be done as a matter of urgency and with your full involvement and input.

  84. Jacqueline 3 months ago

    My Mother was fast tracked for Continuing Care and got it post a stroke. She is now in the care home and severely disabled. She does not talk, move or able to eat or do anything. Only movement is her eyes. The NHS now after 4 months want to reassess her and say that if she does not qualify we or the local council will have to pick up the payment within 2 weeks of the panel decision. is it true that it’s that quick? They want to means test her in advance of the panel decision. I think from what you write that could be illegal so I have said no I do not want to discuss that until the panel have come to a decision – help! All very distressing

    • Author
      Angela Sherman 3 months ago

      Jacqueline – you’re correct. No means testing should be done until there has been a proper review of your mother’s Continuing Healthcare funding. It is only if her care needs have genuinely decreased – and only if they have decreased to such an extent that they are now primarily social care needs – that there should even be any mention of means testing. But money should not be mentioned at all until the proper review has taken place – and taken place according to all guidelines and within the law.

      • Jacqueline 3 months ago

        Thank you. I suspect the assessor was working outside of what she should have been. She is the NHS Continued Care Nurse from the local hospital who organised to meet me at the home to do my Mother’s assesment and she asked at the end of the 2 hours I spent with her talking about my Mothers needs and condition whether my Mother owned her own home. Since my previous email, I did challenge politely and said that when we next meet I am happy to continue the assessment and the local council social worker is welcome to join us if she is part of the MDT that make the decision re whether NHS CC funding continues but my Mother would not want to discuss her finances until the decision had been made by the panel. She said that it was best to be prepared and put in an email that I needed to be clear that if the panel says no that the home will invoice my Mother the next day to start charging her. She added verbally that it was best to start giving the means test information now otherwise the family would be ‘out of pocket’. Sadly since I was waiting for the next meeting with them in a week’s time yesterday at my visit my Mother was very distressed and breathing erratically. As so often I had to point this out to the nurse at the home. Mum has been admitted to hospital and had a (very obvious to nurses in A&E) serious urine infection and pneumonia. She is being managed for her last days, feeding has stopped and the care is amazing – in the hospital. So it seems we will not be put through the indignity and frankly what I feel was bullying, although I was standing my ground, of the NHS Continued Care Nurse. Maybe she was just trying to help and be realistic but it all felt wrong and with your reply and wonderful website that helped me understand the process and my Mother’s rights I was getting fully prepared to stand our ground. How sad that things have to end up like this when it’s such a difficult time for the sick person and their loved ones. I am considering making a complaint if I have the energy after all that is happening. You know what it’s like – so much else going on that sometimes you just let things go. If I did complain do you think it’s worth it? I would do it if it made things better for others. Who would it be best to approach? Thank you

        • Author
          Angela Sherman 3 months ago

          So distressing, Jacqueline. I can’t see how the Continuing Healthcare was trying to help; it sounds to me as though she was trying to prepare you for paying. She has either had woefully inadequate training or she is ignoring care funding law. If you decide to complain, you can send this to everyone involved – including the Head of CHC, CEO of the CCG, Head of Adult Care at the local authority (the LA may not have properly fulfilled its legal duty to decide whether your mother’s care is beyond their legal remit: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/), care home manager, NHS England, etc. This may seem a bit like overkill, but sometimes it takes that to get the relevant people’s attention.

  85. Kay 3 months ago

    What an eye opener all of this is having just come across it with my elderly 91yr oldmother. She was admitted to a&e following a fall, has fractured her ankle; having put a plaster of Paris on they moved her to a local community hospital where she is not allowed to weight bear at all. She has now got a urine infection (which they are treating). The physiotherapist is unable to do any rehabilitation or mobilising so they have now said that the health authority, because they need the bed, are moving her to a nursing home under the Continuing Care Assessment. I have requested that we have a say in where she goes but have been informed that it is the NHS decision not ours and will be informed when she is moving. What do we do if the place she is sent to, we feel is inappropriate/unsuitable?
    Mum does have mental capacity, however, we as a family have two powers of attorney (financial and welfare) registered, and are wondering can we use it?

    • Chris 3 months ago

      Hello Kay,
      Sorry to hear about your mothers fall.
      Under continuing care guidelines, a family representative attending is acceptable, if available, when making the assessment. The continuing healthcare asessors will use a decision support tool (DST) which uses various health domains (Cognition, Behavioural, Mobility, Continence etc etc) to make a decision on eligibility. I suggest you download the guidelines https://www.gov.uk/…/National-Framework-for-NHS-CHC-NHS-FNC-Nov-2012.pdf
      Its heavy reading but it lays out how the full process is undertaken. If in the event your mum isnt eligible and she isnt reliant on local authority funding, you will get awarded Funded Nurse Care (FNC) which is £112.00 per week. If it will be your mother funding her own care then the balance will have to be paid by her assets. In any event you should have a say where your mother is placed during the continuing healthcare meeting you should attend. i.e. She shouldnt really be placed out of the locality she is familiar with or too far away from family.
      The NHS arranged this for my father without my input but I soon quickly put a stop to it. I suggest you try ringing local nursing homes to try find one suitable, especially if you are arranging the payments on your mothers behalf (Not that POA means they have assets of course). You have to be persistent with these people bordering on beligerent! Find out who the nominated nurse for her in the hosptal ward or if any social services care for the elderly are involved and harrass them. You are dealing with automated beaurocracy here so you need to get stuck in!
      If mum has had visits from community matron nurses, try to get the daily log visit book which should contain destils of their visits, why and possibly an assessment of their own. In fact its important you get all medical information you can lay your hands on because the CHC assessors deliberately overlook this information in the DST in my experience.
      To be honest with you , just because a person is elderly and may have mobility issues from a fall, often this may not be enough for full care funding. The care domains I mentioned often have to show a complexity and unpredictability, that can often be well managed by care but still remain major health issues. From the sounds of it mum is immobile now. Often this can have impact on Continence because of immobility and hence UTI`s and bedsores (Waterlow scale). So these two domains are related but not necessarily complex or unpredictable. You`ll get a higher score on Drug Therapies and Medication if mum is on four or more medications as there is a known risk with that on elderly patients.
      For example, my father had High scores in the DST in 4 domains and 1 Severe relating to his medication that seemingly could not lead to managing it well which impacted his Behavioural domain.
      Obviously, each decision is taken on a case by case basis and without going into personal details, only the family may have that to figure out how their relative could/should be assessed in each domain.

      • Author
        Angela Sherman 3 months ago

        Good tip about gathering as much evidence as possible, Chris. This may also help: http://caretobedifferent.co.uk/supplying-evidence-for-continuing-healthcare-assessments/ Just to clarify a couple of other points you made: 1) Funded Nursing Care @ £112/wk – this is given to people who don’t qualify for full NHS Continuing Healthcare but who do have some nursing needs. It has nothing to do with a person’s money or assets; it’s not means tested. 2) Paying for care – if a person does genuinely have to pay for their care (and this is decided through a Continuing Healthcare assessment ONLY, not through a means test) they will need to use their savings/assets ONLY if their money totals £23,250 or less. After that the local authority will pay, but the person may need to make a contribution from income until their money falls to £14,250. But remember that no one should talk about a person’s money or means test them until the Continuing Healthcare assessment process is complete.

    • Author
      Angela Sherman 3 months ago

      Kay – the NHS cannot dictate which specific care home your mother goes to. You have choice. I’m suspicious that they’ll want to push her into the cheapest one. Find a care home you like and ask them whether they have – or have had – residents funded through NHS Continuing Healthcare (CHC) . If they have, the NHS can’t argue that the home is too expensive. And even if they haven’t had anyone funded that way, that may not mean they can’t take CHC-funded residents. In addition, the home MUST be able to meet ALL her care needs. Also, your mother must be assessed for CHC before being discharged fro hospital. This may help: http://caretobedifferent.co.uk/paying-for-care-between-hospital-discharge-and-funding-decision/ you can also quote the Care Act to help you: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/ Be sure to read the comments below the article, too. The local authority must be involved.

    • Jacqueline 3 months ago

      Hi Kay,
      Be very firm that you will not allow your Mother to go to a home that you have not seen. I have just had experience of this and they do vary. One I visited was horrendous. Check on the official website of the body that assesses care homes and grades them . You want at least a good one – not one that is underperforming and then choose the local ones and visit them and give your short list of where you would prefer her to go. I stuck to this like a lioness and got what we wanted.

  86. Hayley 3 months ago

    My Mum is already receiving continuing care and we have been told they won’t pay the full cost of the home which is £1500 a week and will only pay up to £1200 a week. Hence why we are having to top up the extra £300 a week. This isn’t right is it. How can I get them to increase this? Mum is very settled in this home and doesn’t want to move- my worry is they will try and move her to a cheaper home, which won’t have the small bed ratio and tracking ceiling hoist that she needs. Plus she is on bipap overnight.

  87. barbara 3 months ago

    Hi,
    Can any body offer any advice please.
    My mum died a few weeks ago, cause of death was pneumonia brought on by aspirating.
    We are embroiled in a long ongoing battle to obtain CHC funding, however, following a stroke which mum had in January 2016, the hospital discharged her back to her care home as end of life, she suffered 2 suspected further strokes after she came back.
    Mum was referred to the palliative care team and all end of life drugs were sent out with her.

    The day mum arrived back at the home, the manager requested a Fast Track assessment to be carried out. The next morning she was declined, no paperwork of any kind was completed, she was declined on the basis that she had eaten some breakfast, had taken some fluids and had passed water.

    Mum was diagnosed as having moderate dysphagia and the thickness for her fluids had to be increased from 1 scoop to three.

    Mum had suffered 2 separate incidents of aspiration, after the second incident the district nurses carried out a Checklist, but, without informing the manager or duty managers at the home and we the family were also not told or given the opportunity to attend.

    Staff who do not regularly work on mum’s unit were asked to be present as advocates.

    The nurses scored mum as a C and stated that she was at low risk of aspirating, this score was later changed by the ratification panel to an A.

    Subsequently a few weeks later mum died, having aspirated again.

    We made a complaint against the nurses, the decision went against us in favour of the nurses.

    We were then invited to a meeting, but they still will not accept responsibility and are adamant that their actions and decisions were correct. We do not agree, but are unsure as to whether or not we have a case.

    Had anybody been through anything similar or can offer advice or opinions.

    We feel that mum was let down.

    Thank You in advance

    • Author
      Angela Sherman 3 months ago

      So sad to hear this, Barbara. It’s an awful situation and experience for you – and of course for your mum before she died. If the nurses could not see what your mum’s needs were then they were potentially negligent. Regarding the Fast Track, this should not have been declined if an appropriate person put it forward (someone involved in the…”individual’s diagnosis, treatment or care and are registered medical practitioners (such as consultants, registrars, GPs) or registered nurses. These can include senior clinicians employed in voluntary and independent sector organisations that have a specialist role in end-of-life needs (for example, hospices)…” (Fast Track form) These are just some examples of appropriate people. Also see page 6 paragraph 12 of the Fast Track form: “A CCG upon receipt of a completed Fast Track Pathway Tool, MUST decide that a person is eligible for NHS Continuing Healthcare. Therefore, where a recommendation is made for an urgent package of care via the fast-track process, this should be accepted and actioned IMMEDIATELY by a CCG.” There is also nothing that says the Fast Track will be declined if a person receives fluids etc. It’s nonsense. Nor is there any requirement for a specific prognosis to be made in terms of the length of time a person has left to live. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213140/NHS-CHC-Fast-Track-Pathway-tool.pdf The CHC assessors have also failed to follow proper process in not informing you about or inviting you to assessments. This may help you regarding an appeal: http://caretobedifferent.co.uk/appealing-a-continuing-care-funding-decision/

  88. Melanie Hinde 3 months ago

    Hi
    My Mum had a CHC assessment completed 5 weeks ago and a checklist 6 weeks ago; I have been told today that the assessment was completed fully and that no recommendation was made in part 3. The DN who completed the assessment has been requested to complete part 3 and resubmit. Does anyone know if the period of time for a decision start again from the date of resubmission?

    Many thanks in advance

  89. John Mallett 3 months ago

    Hi Melanie I would also be interested in the answer to your query, my wife Jean had a checklist done by a DN and forwarded to the relevant department on the 16th of April, having heard nothing she contacted them last Friday and it seems a question was not answered correctly and the checklist will be returned to her for correction.

    • Author
      Angela Sherman 2 months ago

      A Checklist can be completed by one person, but a full assessment (using the Decision Support Tool) must be carried out by a multidisciplinary team.

  90. Mel Hinde 3 months ago

    Hi
    Thanks for your response; apparently the DN did not know she had to complete with another professional so there is now a meeting with a Social Worker to complete again. Do you know if the time period for a decision starts again from when the new assessment is submitted. I did advise the DN at the meeting with Mum and myself that I thought it was a Multidisciplinary Team (MDT) who should complete, but she said it was ok.
    John; if it was just the DN who completed it may be worth checking if they have to have a 2nd professional present to complete again, please see Angela’s response to my initial query.

  91. John Mallett 2 months ago

    Hi Melanie Jean has only had the checklist done, I imagine that would be ok being carried out by the DN, just that someone realised the nurse had made a mistake but did not bother to inform her, just waited a couple of months until she asked what the situation was, delay tactics I imagine.

  92. John Mallett 2 months ago

    If we do achieve CHC funding for Jean would this mean she would have to have full time care as we don’t need that, we manage quite well at home but I have no free time as Jean cannot be left alone, I do pay for carers but have to book them in advance and it also gets expensive, I feel we should be entitled to some help. Jean has complex stage Parkinson’s disease, Dementia and the hospital says zero mental capacity. She is unable to do anything for herself (the hospital discharged her like this without any assessment for CHC funding). Jean was admitted to hospital because she fell and dislocated her shoulder. The Doctor in charge drastically changed the timing of her Parkinson’s medication towards the end of her stay which caused Jean a lot of suffering, I believe this was done to make Jean slightly more mobile in the morning before discharge.

    • Author
      Angela Sherman 2 months ago

      CHC would cover all assessed care needs and the care provided would be whatever she does or doesn’t need. Also the NHS should not automatically expect you to be providing the care yourself, John, just before you’re at home. On a different note, you mentioned that the hospital says that Jean has zero mental capacity. Whoever said that may not have understood what ‘capacity’ is. It relates to a specific decision that needs to be made about a specific thing and a specific time – it’s not a general view of a person’s cognitive state or ability: http://caretobedifferent.co.uk/mental-capacity-assessments/

  93. Karen James 2 months ago

    Hi my daughter is 18 told she will be eligible for chc package but will she lose her care component from pip once she received it.

    • Author
      Angela Sherman 2 months ago

      Karen – I believe PIP is only affected if your daughter is in hospital or in a care home, BUT AgeUK have more information on this and it would be worth double checking this.

  94. Mel Hinde 2 months ago

    Hi

    I have now been sent a copy of the assessment for Mum correctly completed by the DN and SW; however when I contacted the DN about completing the assessment again, (it was returned as there was no recommendation included in the original and it had been done by a DN only) the DN advised there would be no need to speak to me or my Mum again. I have now been told by my Mum that the DN and SW visited her to discuss the assessment and the copy I have now received recommends that my Mum moves from residential care to nursing care as the residential home cannot meet her needs. This is the first I have heard of this recommendation and I would definitely disagree with this recommendation as my Mum has no nursing needs. Can you advise if I am able to challenge this recommendation even though the assessment has been submitted before I or my Mum saw a copy of it?

    Thanks
    Mel

    • Author
      Angela Sherman 2 months ago

      You should be kept informed and involved throughout, including being provided with copies of the assessment notes. You can certainly appeal the recommendation.

  95. John Mallett 2 months ago

    A means test was carried out and a care package set up for Jean in 2014 and we have been paying ever since, I wasn’t aware of CHC funding it was never mentioned and it was only after I found the excellent Care to be different site that I became aware that this might have been available. Jean was diagnosed with Parkinson’s in 2010 and prescribed six Sinemets per day gradually increased to ten and for the next four years suffered terribly then in 2014 after a really nasty fit she was taken by ambulance into hospital where apparently she nearly died. The hospital immediately reduced the Sinemets from ten to four per day and the discharge letter said she had been overdosed by me (Sinemets are a prescription drug – don’t know where I was supposed to have got extras from). We were then asked about money, property etc and Social Services (SS) insisted on a care package which i was not able to refuse. I found this quite upsetting as I had done everything for Jean and always timed her medication with the alarm on my mobile phone. The carers and SS soon became aware that there were no problems with medication or anything else at home and I was able to do whatever I wanted regarding carers but I still have to pay when I need someone to look after Jean.

  96. John Mallett 2 months ago

    As I mentioned before a checklist was done for Jean and the District Nurse (DN) said she sent it in on the 16th of April but the CHC dept say they did not receive it until the 6th of June and it seems to have been going to and fro for correction ever since, its back with the DN at present but she’s away so I could not speak to her. Is this just bad luck and we have to accept that we have possibly missed out on a few months of care help. Would there be anyone I should complain to. Thanks, John.

    • Author
      Angela Sherman 2 months ago

      If it’s the CHC team being obstructive – and it sounds as though they are – then make them aware that you will be contact NHS England about their behaviour. The CHC team and/or the District Nurse should also let you know in writing why exactly there has been such a long delay between the Checklist first being carried out and its apparent receipt in early June. The District Nurse has a responsibility to account for this also.

      • John Mallett 1 month ago

        I contacted NHS England and they said to contact the local CCG, this I did and within a few days I had a phone call from the CHC team to say the checklist had been cleared for the next stage but they could not give an explanation for the delay. Would there be any point in pressing them for this information? Thanks John

        • John Mallett 1 month ago

          I received a letter confirming the positive outcome of Jean’s checklist and an onward referral for an assessment of eligibility has been made, I am told it will be placed on an allocation list, lists are prioritised by order of clinical risk, health and environmental risks, and the list is reviewed on a regular basis. Due to the process of prioritising cases the length of wait is variable, dependant on the individual’s clinical needs. I do wonder if this could mean a very long wait as though Jean is unable to do anything for herself I am not sure exactly what clinical needs cover.

          • John Mallett 1 month ago

            Could this mean the possibility of CHC funding is all over for Jean, if Jean is placed on an allocation list prioritised as the CHC team say by clinical risk, health and environmental risks then she may never come to the top of that list and possibly no one would, how would any individual know.

        • John Mallett 4 days ago

          As i said before the District Nurse (DN) said that she had forwarded the completed checklist for Jean on the 16th April, CHC claimed not to have received it until the 6th of June and returned the checklist to the nurse as it was not completed correctly, I asked for a written explanation as to why there had been such a long delay, April to June but received no reply, I recently asked for a copy of Jean’s checklist which they promptly sent, this list was dated the 24th of April and the DN had given Jean two A’s, 3b’s and the rest were marked C I thought this to be a fair assessment of Jean and the nurse had done her job fairly and was telling the truth regarding the date that she had sent it to CHC. As you suggested Angela it was the CHC dept causing the delay and even now four months since they received the list nothing has moved forward.

  97. Sue Taylor 2 months ago

    Earlier this year my Father was in hospital following a fall and a chest infection, he has vascular dementia. His condition deteriorated to the point it became obvious he needed 24hr care in a residential care home. We tried to get a CHC assessment done and after a lot of trouble it was done the afternoon before he was to be discharged into the care home. The assessment was carried out in the presence of myself and my Mother – we both have power of attorney and the result was my Father should be referred for full assessment for CHC funding. The next morning the discharge nurse who had carried out the assessment telephoned my Mother to say there had been a great improvement in my Father’s condition and she had therefore redone the assessment and the result now was he should not be referred for full assessment. She said if my Mother did not agree over the phone my Father would not be able to be discharged and would probably lose his place at the care home. He had at this point been in hospital for over 7 weeks and obviously my Mother gave her agreement over the phone as she desperately wanted my Father out of hospital. We then attended a meeting with the discharge nurse 2 days later and I questioned her at length on the changes she had made to the assessment, she had changed 5 B’s to C’s. She became upset and said she could change some back – such as nutrition and medication and then said she would come out to the care home and redo the whole assessment. She went to speak to the legal department at the hospital as I wanted copies of both assessments, when she returned she informed us that she had been told she herself would not do the assessment at the care home but someone else would come and do it. Over the next couple of weeks the social worker assigned to my Father changed twice and no one came out to redo the assessment. I had by this time sent a written complaint to the hospital.

    A new social worker was assigned in May and came out to do an assessment to see if my Father needed to be in full time care and agreed yes he needed 24hr care. At this meeting I asked about the CHC assessment and he reluctantly agreed to arrange for it to be done, he extended the respite care until 16th June. He wanted my Mother to have a financial assessment done but I insisted she would not do that until the CHC assessment had been done. On 14th June having heard nothing I phoned him and he said he would come out the following week and would in the meantime extend the respite care again. We had the CHC assessment done at the care home on 24th June, the outcome was referral for full assessment. The social worker e-mailed me saying he had spoken to CHC and it may take them 28 days to consider the application. He informed me that my Father was discharged from hospital under a social care remit to the care home as he was considered not to meet CHC funding criteria at that point in time and the significance of social care in this context is that social care services are financially assessed services. He has now clarified that if my Father does not qualify for CHC then my Mother will have to pay fees backdated to 23rd March. I think the hospital fraudulently discharged my Father under a social care remit as the second assessment done without us present was clearly untrue, no one with vascular dementia could improve that much overnight and my Father has showed no improvement since. I am thinking about getting a solicitor involved but am worried about incurring a large legal bill on top of the back-dated care home fees. Please could anyone let me know where we stand with this or what to do next?

    • Author
      Angela Sherman 2 months ago

      Sue – it sounds far too ‘convenient’ for the hospital discharge nurse to unilaterally declare that your father no longer warranted a full assessment, given his state of health. It sounds as though they were just trying to get your father out of hospital no matter what. You were absolutely right to refuse any financial assessment until the CHC had been done. If your father got through the Checklist – and it sounds as though he did in the care home – then the full assessment should be triggered immediately and scheduled as soon as possible. It sounds as though there have been many breaches of the Care Act here. This may help you: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/ The local authority is quite possibly currently in an illegal position now, by effectively accepting responsibility for care that is beyond their legal remit. You could contact the Head of Adult Care at the local authority and highlight this point to him/her. You could also state that you will be making a complaint to the Local Government Ombudsman about the local authority’s failure to abide by the Care Act and in trying to extract financial information before the CHC process has been properly considered. The social worker should only conclude that your father doesn’t not qualify for CHC funding if a proper Multidisciplinary Team meeting has taken place – with your input and involvement – AND only if the MDT made a recommendation of no funding AND only if the CCG decision making panel agrees with that recommendation.

  98. Chris french 2 months ago

    Following an unsuccessful appeal for CHC funding for my late mother I appealed to NHS England in October of last year. They sent me some forms to fill in which I completed and returned immediately however, I have heard nothing further from them. I have written to to them requesting updates of the situation yet it appears that my letters are being ignored and left unanswered. I was wondering if you or anyone else have any advice to offer regarding this situation.
    Thank you for excellent website and the invaluable help it offers.
    Chris French

    • Author
      Angela Sherman 2 months ago

      That sounds very frustrating, Chris. Keep badgering them in whatever way you can – phone, post, email, etc. It shouldn’t be like this, of course, and people working in public office should not behave in such a manner. Unfortunately, many families report similar experiences. My response to Sue Taylor here may also help you – in perhaps also putting pressure on the local authority for their failure to look at their own legal position when your mother was in care. They remain (potentially) in that illegal position until your appeal has been properly dealt with. Thanks for your kind words about the website. Appreciated.

  99. Alan 2 months ago

    My 78 year old mother has suspected dementia. She has had a CT scan and we are waiting for the results from a home visit from a memory team in a couple of weeks. I look after my mother although unpaid as a carer at present and I live at home full time as I have always done since birth. I’m 43 – my 13 year old son also lives with me 7 days out of 14 as he also lives with his mother. I am absolutely petrified that we will lose our family home. My mother can hardly walk now. I clean her, help her drink liquids and cook for her,she is unable to look after herself and is rapidly getting worse. Could you advise me as to what I can do to keep the family home please home. She doesn’t want to go in to a care home and I don’t want her to either. We would just like to care for her at home. Any help will be much appreciated. Kind regards Alan

    • Author
      Angela Sherman 2 months ago

      Alan – it sounds as though your mother needs to be assessed for Continuing Healthcare funding. This should be done before anyone starts talking to you about selling the house – or anything else financial for that matter. Also, as the house is your home, it will almost certainly be protected for that reason also.

  100. Angela 2 months ago

    Hi, I live with and care for my Grandad who suffers from Vascular Dementia and Alzheimer’s. Me, my husband and one of our sons moved in with him 6 years ago as it was obvious he needed help. We gave up our privately rented house, and in more recent years I’ve had to give up my job. Granddad owns his own home. It’s been in our family since 1942 and is willed to my Dad. My Grandad has some savings but due to work that needs carrying out on the home and recent respite care fees he’ll soon be under the savings threshold.
    The last couple of years caring for him has been to be honest hellish. He’s still quite mobile so needs to be watched at all times. My own health both mentally and physically has detoriated due to the stress and mostly existing on 2-3 hours sleep a night.
    I urged my Dad to get LPA a long time ago but he didn’t so no one has it, although Dads a joint bank account holder.
    Social services have been little to no help. So far I’ve put off a financial assessment as I wasn’t sure what would happen but one is booked for a couple of weeks time. At the moment Grandad gets a carer in the morning to assist with washing and dressing…that’s it.
    A lovely district nurse has helped apply for Continuing Care, that was a few weeks ago…I’m still waiting to hear back.
    In the meantime I’ve had a meltdown, I just burnt out. Grandads been in a home for 11 days which we’ve privately funded, but he comes home today. I’m dreading it.
    The home are aware that we’ve applied for Continuing Care , they said he’d probably only be classed as a ‘medium’ and recieve in the region of £150 a week funding? I just don’t understand it all at all.
    I’m feeling pretty desperate. Can anyone advise me? Do I still go ahead with the financial assessment with the council? They’ve already said the house will need to be sold.
    Angela

    • Author
      Angela Sherman 2 months ago

      Angela – it sounds as though the care home don’t know what they’re talking about. Continuing Healthcare funding does not have any ‘medium’ band or any specific payment of £150. In addition, no one should be talking to you about any financial assessment or about selling the house until the Continuing Healthcare funding assessment process has been properly carried out and a reliable decision made. You mentioned that the District Nurse has helped apply for Continuing Healthcare. What did he/she do? Was it a Checklist? It doesn’t take weeks for the outcome of the Checklist to be known – instead it’s pretty instant – so it sounds as though he/she may not know what they’re doing either. Read through the article on our blog. They’ll help you, including this one: http://caretobedifferent.co.uk/nhs-continuing-healthcare-checklist-assessment/ If it eventually become clear that your granddad does have to pay for his career – and only IF – the house may be protected because it is your home.

  101. C Devlin 2 months ago

    Hi – My mum contracted Herpes Simplex Encephalitis which has left her with a brain injury and she has been placed in a Nursing Home. She was in hospital for almost 3months and as she requires 24 hour care and has dementia like symptoms. We were unable to care for her at home. My dad is 75 and they own their home. We are in Scotland and she receives Local authority funding and we top this up with £129 a week and she is granted £25 a week from her pension for personal items (she receives £156 a week pension). I am not aware of her ever having been evaluated for CHC as the hospital brought social services in when they had to discharge her. Is the process the same in Scotland and should I have been informed about this and do I need to be paying this money every week.

  102. Mel 2 months ago

    Hi, I wondered if there is any definition of nursing needs within CHC assessment. The recommendation on my my mums assessment states for her to move to a nursing home but my mum has no medical nursing needs and she does not want to move. The residential home she lives at say they are short staffed so cannot provide the level of care she needs, she uses a wheelchair and needs support to dress and wash, they say this takes too much time and they don’t have careers who can do this. The DN who wrote the report has now said the recommendation could be amended to say Mum requires additional help at the residential home. Is this possible if they agree and if they do agree do the Nhs pay the care home fees and the additional support fees? Many thanks for your time.

  103. Helen 2 months ago

    Hello,

    This is a very real issue and not all about funding. My mother has been assessed and does not qualify for CHC funding but her assessment showed that she does need nursing care. However, like Mel’s mother above, she does not need medical nursing care just extra time as she is blind and can’t feed herself and is in a wheelchair. The fact that she needs ‘nursing care’ seriously restricts which care home she can live in – the current nursing home is not at all satisfactory but good residential homes in the area can’t take her as she has been assessed as needing nursing care. We want to move her from the present unsatisfactory accommodation but other homes can’t take her so long as she needs nursing care. At present the NHS pay £112 to the nursing home for the nursing care and she pays for the residential care. So at present she is condemned to live in a home where the care is poor and can’t move to a better residential home. Can the NHS pay for extra help at a residential home?

  104. Frances O'Donnell 1 month ago

    My mother was been diagnosed with Alzheimer’s over a year ago and also has Vascular dementia caused by a bleed on the brain after a fall. She has a bowel problem that can only be rectified by surgery which her consultant believes she will not survive as she is 87 and very frail. As she cannot have the surgery she is prone to blockages which cause days of vomiting until the blockage releases itself. She has chronic arthritis and cannot walk unaided and is incontinent. All in all, a horrible way to live. She is in nursing care and all except £30 a week of her pension is paid out in care fees. She has no property and only about 13 thousand pounds in savings. Is it possible that she should be reassessed so that she does not have to pay towards her care?

    • Author
      Angela Sherman 1 month ago

      Frances – yes, if your mother has never been assessed for NHS Continuing Healthcare funding (or she has been before but her needs have now changed), she should be assessed as a matter of urgency. Remember that her money is irrelevant in NHS Continuing Healthcare assessments. Very often health and social care staff will focus only on means testing, and yet this is strictly secondary to an NHS Continuing Healthcare assessment. If no one has ever assessed your mother before for NHS Continuing Healthcare, and if she proves to be eligible, you may find you can also reclaim some of the care fees she’s already paid. This may help: http://caretobedifferent.co.uk/just-started-applying-for-nhs-continuing-care/

      • Frances O'Donnell 4 weeks ago

        Thank you so much for your advice and guidance. I am on the case! Kinds regards. Frances.

  105. Sue adamson 1 month ago

    Hi Angela I send a comment in and cannot find a response or comment
    Sue

    • Author
      Angela Sherman 1 month ago

      Sue – if your comment didn’t upload, it could have been a momentary internet blip. Please feel free to post it again.

  106. Bridget 1 month ago

    Fascinating piece on NHS continuing care for the elderly.

  107. Mel 1 month ago

    Hi, I have been told today by the manager of the care home whete my mum currently lives that you can only get CHC funding if there are nursing needs identified, could you let me know if this correct? Thanks for all the advice so far, it’s been so useful in meetings

  108. wilson1973 1 month ago

    It seems a grey area as to what qualifies as Continuing Healthcare and what is deemed to be social care.

  109. Alan chapman 3 weeks ago

    My partner had a massive stroke last November. After 10weeks in hospital he has been in a nursing home since February 1st. He had the test for nhs continuing healthcare funding by social services which he failed. He is blind in the left eye and paralysed down the left side. There seems no chance he will get any of this back, so will spend the rest of his life in the nursing home. He is 77yrs old and is paying the full cost. The stroke association have said there is no chance to get the decision reversed. He is being well cared for. What is your opinion on this situation?

    • Author
      Angela Sherman 3 weeks ago

      You can appeal anything you feel was done incorrectly during the assessment, e.g. the scoring, the way the criteria were interpreted, the knowledge (or otherwise) of the person carry out the assessment, lack of appropriate evidence, etc. If you believe that care needs were played down or marginalised, and that the scores given should have been higher, put this all in writing and send it to the Continuing Healthcare team at your local NHS (CCG). Let them know that you wish the assessment to be repeated as a matter of urgency.

  110. wilson1973 3 weeks ago

    Do you happen to know if attempting to transfer ownership of a home after a diagnosis of dementia is futile?
    My mother has had an official diagnosis this week, I have always lived with my mother from birth at the same house, I’m 43 and have a son that lives with us 50% of the time, this is our family home it has taken 20 weeks to get a diagnosis for attendance allowance for my mother and when that has been actioned I will be an official carer, although I have been for years.
    I have read about transferral of ownership as seen as deprivation of assets and I’m worried, we have not contacted social services yet as we don’t want to get involved in that loop as of yet, I’m not sure if that is a good thing or a bad thing, any help would be much appreciated,I’m very worried.
    Kind regards Alan

    • Author
      Angela Sherman 2 weeks ago

      wilson1973 – be very careful if you’re transferring any kind of asset or money at this point. Take good independent financial advice, otherwise you could fall foul of the rules about Deliberate Deprivation of Assets. Make sure any financial adviser you speak to is qualified to advise on care fees and also understands NHS funding.

      • Alan Wilson 2 weeks ago

        Thanks – we have decided not to bother. Thanks for your advice. I suppose we will have to speak to social services for any help we can receive in the future. At the moment it does feel like an intrusion but I’m sure we will be grateful for any help they can give when life gets more complicated.

        • Kevin 2 weeks ago

          You may find that the home is excluded for financial assessment purposes for Social Care from the Social Services on the grounds that you are living there.

          The easy route is to ask for a financial assessment for Social Care (not CHC) and see what the assessor says. Given that the assessor is expert in this area and that their advice is free and that if they say i’s not counted then you are free to continue.

          Good luck

          Kevin

          • Author
            Angela Sherman 2 weeks ago

            Keep in mind that not all people carrying out assessments – whether they be financial assessments or care needs assessments – necessarily understand the process or the rules; training for health and social care professionals in this respect is often woefully inadequate.

  111. alan wilson 2 weeks ago

    It seems to vary between local authorities. My LA states you can stay in the home if your under 16 or over 60, so that’s me stuffed; another LA I looked at out of interest had a policy that if you were born in the home and have always lived there you can stay. Shame.

  112. Barbara 2 weeks ago

    Hi,
    I am still fighting to obtain Continuing Healthcare (CHC) funding for my mum, even though she died in April.
    I have to attend an appeal panel meeting with NHS England on Tuesday, however they have now said that they will not take into account the Checklist that was completed just before mum died, and they will not take into consideration the period from January 2016 when she suffered a number of strokes and from there her health deteriorated resulting in her death in April, as they say it is not within their remit.
    However, previously they said that we could raise our concerns in relation to the Checklist and all of the errors surrounding it.

    Also, the CCG and the CHC Lead are setting great store around the fact that mum’s care home notes repeatedly state that she was eating well and was in a cheerful mood and sleeping well, this they say points to the fact that she did not meet the criteria for funding.

    Whilst this is right to some extent, it does not depict the full picture but, we fear, that it will be enough to convince NHS England thst declining mum 3 times was the correct decision.

    Any advice would be appreciated.

    Thank You

    Barbara

    • Author
      Angela Sherman 7 days ago

      Barbara – care home notes often paint an overly rosy picture of a person’s needs and wellbeing; we hear this frequently from many, many families and it’s really frustrating. Your appeal will be the period of care previously being assessed – so presumably your mum’s care up to and at the time of the assessment. However, the assessors should also have looked at the ‘near future’, i.e. likely changes in your mum’s condition and needs during the months following the assessment.

  113. Diane 1 week ago

    My mum is 80 and before a stroke six weeks ago was living alone, independently and in quite good health; she was able to get around the house, cook meals, dress herself and handle bills and financial affairs etc. She has been told that she should now be in a care home as it is not likely she will make further improvements. She is unable to get up without help struggles to walk for a couple of steps and is now doubly incontinent. He speech is badly affected and she now suffers from Dysphagia and requires a pureed diet and thickened drinks. The social worker assigned to us immediately said we would have to pay for all her care without even having seen mum and when we asked about Continuing Healthcare she reluctantly said she would begin a Checklist but told us that we would not get funding as she was not bad enough – not having even seen her. My question is where do we stand with this as before the stroke she was fine.

  114. Marion 6 days ago

    My elderly father moved to a nursing home 6 months ago and was given NHS Continuing Healthcare funding. The DST meeting was attended by a family member, a social worker and a CCG representative. We were informed at that time that a further assessment would be carried out in 3 month’s time and that only the CCG staff and family would need to be present.
    Despite contacting the CCG department, a date for this review has not yet been made. My question is this: if when this meeting finally takes place (if it does) it is decided that CHC funding will be removed, do you know whether my father would be expected to pay for the last 3 month’s care?
    Also, do you know why a social worker would not be required to attend a second meeting? And finally, does anybody have experience of these review meetings and whether it is commonplace to remove funding at this stage?
    My father moved into a nursing home following a massive stroke which left him unable to cope on his own at home and requiring nursing input. He is a lot better than he was but I don’t feel that his needs have changed. I am also aware that my opinion may not count for too much.
    Many thanks for your help.

  115. Mary 5 days ago

    Do social services always have to get envolved with dementia care if your looking after a relative at home?

    • social worker 5 days ago

      I am a social worker. There are many clients in the community being cared for by loved ones which we don’t know about. It is only when a referral comes through to social services – via a GP, police, carer, family member, client – that we will make contact.

  116. social worker 5 days ago

    hi all,
    i have just come across this thread – i am actually a social worker, and experience of CHC meetings and reviews.

    – if any family asks the social worker/ health professsional you want your loved one considered for CHC , we have a duty to address your request and at least have an initial meeting/ or a health professional should explain to you why it is not appropriate if no nursing/ health needs are identified from the onset (we get a lot of families requesting CHC when there are no health/ nursing needs and a simple phone call to explain why CHC is not appropriate at this time solves this).
    – CHC must not be confused with general/ basic nursing care. The majority of people needing homehelp/ residential care and nursing care have some form of nursing/ health need (whether its a diagnosis, district nurse input, med management..etc) but these can be well met with a package of care and health input.
    – the vital difference is if someones primary need is one of health, and their needs will meet CHC criteria on the intensity, unpredictability, and nature & quality of these needs – this is what the CHC meeting will go through.
    – The health professionalsocial / sworker have a duty of care to provide you with an information booklet/ advice re: CHC process before the meeting is held. You are allowed to invite the next of kin (NOK) and most important people to the meeting to act as advocate for your loved one.
    – If CHC status is met (it is often hard to evidence and can take time to confirm) this means NHS will fund the placement or package of care at home. NHS CHC funded beds will still be in the same nursing homes as people who dont meet CHC – it’s just an issue of funding.
    -Often when someone meets CHC they may be too unstable to go into care home and stay in hospital to be cared for; and often if likely to pass away soon, the CHC meeting can be ‘fast tracked’ by health and the usual long CHC meeting is not needed.
    – Health/ NHS have a certain cost that they will pay for a CHC bed at a nursing home. As some homes charge ridiculous amounts and it’s not fair that NHS should pay this when we can find a suitable home which provides the exact same care, but may be less appealing to the eye. The discharge liaison nurse should give you a list of the homes that they contract with.

    Hope this helps a bit – it is a complicated process and often families do not fully understand the process.

    • Author
      Angela Sherman 3 days ago

      social worker – Thanks very much for your comment. Just to clarify:

      1) There must always be an assessment of care needs at the outset, and if there is any indication that a person might potentially be eligible for Continuing Healthcare funding, they must be referred for a Continuing Healthcare assessment. This is a legal requirement under the Care Act. Unfortunately far too many families are simply told (either by phone or in person) that their relative ‘isn’t eligible’ when there has actually been no proper consideration of care needs in relation to Continuing Healthcare funding.

      2) It does not matter whether needs can be well met. It is always the raw underlying needs that should be assessed – as if no care were in place.

      3) If a person is eligible for Continuing Healthcare funding, it does not matter whether they are in a care home, in their own home or elsewhere.

      4) Regarding which care homes or care providers are relevant when a person receives NHS Continuing Healthcare, this article may help: http://caretobedifferent.co.uk/continuing-healthcare-funding-and-choice-of-care-home/. Note: It is ALWAYS a person’s care needs that take priority over any financial motivation on the part of the NHS. A family’s choice of care home is not simply about what is appealing to the eye but about the quality of care provided and how any move to a different home or provider may adversely affect their relative.

      5) Families often do not fully understand the process because those working in health and social care often do not give families the correct information; indeed, many families are never told about NHS Continuing Healthcare and are, instead, wrongly told that their relatives will have to pay simply because they have savings and/or a house. It is care needs that should always be the starting point, not a person’s money.

  117. Tikka 4 days ago

    Hello thank you in advance for any info you can give me. My father in law has been in a care home for 4 years, he suffers from Vascular Dementia. The last few months he has deteriorated, remembers who we are but nothing else, sleeps odd hour but is awake all night, incontinent at times. The home and memory team have advised it is time to move him to their EMI unit. He is self funding. There is an increase in the cost and we were told there may be some financial help available. Do you know what this might be?

  118. tom 3 days ago

    Hi Social Worker thanks for your comment, at what part of the process after meeting social services are you judged for having to pay for care, for instance if somebody has lived there from birth but is found to have a disability after the appraisal, can the home be still discounted after the assessment.

  119. social worke 1 day ago

    Hi Tom – When a client/service user has been assessed by a social worker as having ‘eligible care needs’ (for Local Authority to provide services – either a package of care at home/residential care/nursing home care) the LA will complete a means tested financial assessment shortly after the social work assessment- the social worker will make a referral to the LA’s financial team – this involves a financial officer coming to the home to go through paperwork or liaising with NOK/POA to assist. The financial assessment outcome will state how much the client has to contribute towards their package of care at home (in my local authority it’s a maximum of £60 per week, if the client has over the means tested threshold (£24000 in my LA)- the house is disregarded as client lives there. In RH/NH placements – where CHC isn’t met – the same applies, a financial assessment will be completed and if their partner/ vulnerable adult/ disabled child still resides at the property it can be excluded from the assessment. Also, where the client doesn’t want the house sold, but has to make a contribution for their RH/NH care, the LA can arrange ‘deferred payments’ where the client’s contribution will be provided to the LA once the house is sold/ part of the estate.

    Apologise if this doesn’t answer your question, it’s difficult to give an exact answer without knowing the specific details.

    • Author
      Angela Sherman 15 hours ago

      The capital threshold is £23,250 in England, not £24,000. (The information here on Care To Be Different relates to the care system in England.) There should be NO financial assessment until it has been properly ascertained who is legally responsible for paying for care. The purpose of the initial care needs assessment is NOT linked to a person’s ability to pay; instead, it is an assessment of a person’s care needs ONLY. There must also be proper consideration of eligibility for NHS funding before ANY financial assessment takes place. Proper consideration means the use of he Checklist. It is only if a person does not ‘pass’ the Checklist that any means testing should take place.

  120. Hayley Friar 24 hours ago

    We have already been awarded Continuing Healthcare funding but are having a review to try and get CCG to pay for full cost of nursing home. Can you recommend a solicitors as i want to have a solicitor at the review. Thanks

    • Author
      Angela Sherman 15 hours ago

      Hayley – if you’ve got Continuing Healthcare funding then the CCG should be paying the full cost of care in the care home. The best way to find a solicitor is really to simply google ‘solicitors continuing healthcare’ or something similar. Be sure that any solicitor you use is a specialist in this field.

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