Poor paper processes, a creaking care system and lack of staff knowledge – how they stop people accessing NHS Continuing Care funding
Ian Johnson’s story…
Like so many people, Ian Johnson’s family faced the onerous task of trying to secure NHS Continuing Care funding for an older relative. Paperwork errors in NHS Continuing Healthcare assessments made it even harder.
Their case highlights the frustrations of battling to overcome all-too-common systemic problems in the Continuing Care funding assessment process – and a lack of knowledge amongst funding assessors and healthcare staff.
All this is, of course, a huge barrier to funding. Plus, dealing with an overloaded care system creaking under the pressure of paper processes, keeping track of moving goalposts, driving long distances to look out for someone you love who has serious health problems – all at the same time – is not easy.
Ian’s family eventually won their case for NHS Continuing Healthcare funding, and he wrote to us to share their experience…
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From pillar to post in the health system
“My mother-in-law, a 91-year-old with dementia, initially suffered a fall at home followed by six transfers back and forth between community and acute hospitals; during this time her health deteriorated sharply, with a further fall, a possible stroke and pulmonary embolism adding to her condition. All her hospital transfers happened at night, something we found unacceptable for a frail elderly lady with dementia.
“It was during my mother-in-law’s stay in a community hospital that we were told she would have to go into a nursing care home. At this point, I had begun to research NHS Continuing Care and found Care To be Different’s online tips and advice about care funding, plus the e-book ‘How To Get The NHS To Pay For Care’ , which proved useful allies in addressing the many difficult and trying issues that lay ahead.
Beware of the Continuing Care assessment process – be informed
“On Mother’s Day 2013, we arrived at the hospital (a five-hour round trip) to be told that the discharge procedure would be started immediately – and yet we had not been notified about this at all in advance.
“The initial Checklist assessment (the first stage in a Continuing Care application) was begun without us even having had the chance to prepare – a situation made worse by my mother-in-law’s C.Diff infection, which made her very confused and upset.
“The ward sister explained that there had been a note in my mother-in-law’s file to tell her family that the Checklist would happen that day, but as usual they forgot.
“Luckily, we understood the importance of the Checklist assessment, as we’d already researched this on the Care To Be Different website.
“Because we knew what was going on, and my wife and sister were able to argue the case for higher scores in the Checklist – and we managed to get two ‘As’, which meant we would now go through to the next stage.
Continuing Care assessments – 2 stages
“Having coped with the Checklist being sprung on us, we were then told that the completion of the Decision Support Tool (DST) – a vital document that is intrinsic to the actual funding decision – would happen the following weekend, in the presence of a Multi-Disciplinary Team (MDT). We were also asked if we had a care home in mind at this stage.
“The MDT meeting took place with my wife and sister present, as they hold the all-important power of attorney for my mother-in-law. The meeting also involved the Senior Staff Nurse, an MDT coordinator and a social worker.
“We spent three hours arguing the various points across all the care ‘domains’ – the different aspects of health that are assessed. At the end the coordinator and social worker agreed that my mother-in-law qualified for NHS Continuing Care. They said they would write up more notes, considering the length of the meeting.
“We also agreed to return the following week to see and possibly sign the final DST document, having completed the section on ‘relative’s comments’.
“We were also told that the MDT’s recommendation for funding would have to go through a hospital manager for approval prior to going to the decision-making panel.
A fortress of paper and process!
“It is at this stage that I became acutely aware of the pressures put upon nursing staff that subsequently create problems for families reliant on the DST for a fair and consistent funding outcome.
“We were told there was a bed shortage at the hospital and that they had 10 more DSTs to do over a four day period. In addition to the patient’s notes (in my mother-in-law’s case over 60 pages) the key staff involved had been asked to fill out a Standard Assessment Procedure (SAP) form that contains DST assessment criteria, and yet this is not part of the actual Continuing Care assessment process.
“You can imagine that with 11 DSTs to complete, staff were doing paperwork and no nursing. The doctor on duty just did not have time and would write just one or two words in each section, e.g.: ‘No needs’. This meant that at the outset of our DST we had to refer to the patient’s notes ourselves, as the SAP forms did not provide any support for Continuing Care funding.
“We saw many relatives being ‘talked through’ Checklists and DSTs that had been prepared in advance – and so could not possibly have been proper and thorough assessments – and they were all over in 20 minutes or so. I think most people had no idea what was going on.
“Very aware of these potential pitfalls, I and my family wrote a four-page document for the ‘relatives input’ section of the DST, arguing for higher scores where these were due, for example a ‘Severe’ score where this was missing.
“We also expanded on the interrelation between care domains – the part of the assessment that deals with ‘nature of need’, ‘intensity’, ‘complexity’ and ‘unpredictability’. This area does not seem very well understood by care staff – or indeed assessors. We found the article, Continuing Care Assessments – Frequent Mistakes Parts 1 & 2 very useful here.
“When we next visited the hospital, we found the MDT coordinator had been off work through illness and had not completed their part of the DST assessment. Despite this, the form had been submitted to the hospital manager with that very evidence missing! This resulted in the manager writing back to say there was no evidence to support the case for Continuing Care funding.
Back to the drawing board – filling in the missing pieces
“At our insistence, another three hours was spent writing up a fresh DST document, with the sympathetic ward sister making notes, and with us having to oversee that crucial supporting evidence was noted correctly. At this point the assessment team also realised the social worker’s report had been missing from the initial DST submission. The ward sister wrote on the forms that my mother-in-law was a clear case for Continuing Care funding.
“We felt that the end of the tunnel might be in sight…
A turnaround?
“The Discharge Manager called us to tell us that, following a review of the case, Continuing Care would not now be recommended. This prompted a sharply-worded response from us stating our complete dissatisfaction with the whole DST process.
“To our surprise, we then received a call from a new person apologising for everything and saying that they had now realised that the MDT, the coordinator, the ward sister and the social worker had all recommended Continuing Care funding, that the hospital manager now agreed and that all evidential support had now been pulled together.
And finally… success
“On April 3rd 2013, we heard that my mother-in-law would receive NHS Continuing Healthcare funding.”
Ian’s is a cautionary tale for certain, but it shows that, with the right knowledge, families can challenge what they’re told within the care funding system – as what they’re told is often incorrect. The system is rife with lack of understanding and communication, and is often administered by staff under tremendous pressure.
As well as reading our website and downloading our e-book, ‘How To Get The NHS To Pay For Care’, 
Ian also subscribed to our free monthly eBulletin. It’s packed with useful tips about NHS Continuing Healthcare, care fees and other care-related matters. You can sign up today on our website.
We’re delighted Ian’s family managed to secure the funding. Ian has also kindly shared his 13 top tips about NHS Continuing Healthcare – to help other families going through the same assessment process.
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
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Well, that’s 4 years of our life we will not get back!
Won’t bore you with then endless debilitating detail but suffice it to say that, bearing in mind the National Framework is the current legislation, any failures to abide to it by the various committees etc. involved in your case are of absolutelt NO consequence.
We have ended up at the Ombudsman and received a negative response regarding our claim.
Please, be aware the when you finally get to NHS England, the last hurdle, ANY evidence and/or information or decision that has previously be made by others, can be totally disregarded/overuled by NHSE, THIS INCLUDES EVIDENCE, SUPPORTED BY THE NF TO SHOW FAILURES.
Basically, NHSE have this overwhelming power no matter what you present or try to present.
Interpretation of the legislation is the key point they use which is totally contrary to the legislation and the spirit of it.
Although different areas in the country may vary, once you begin this journey to claim CHC, you will like us, uncover evidence based lies/ cover ups by staff regarding record keeping, alteration of documents, interpretion, failure to conform to the NF on many, many levels….. it will be frightening.
This may sound to you to be a bitter response by us but, we can assure you that prior t o sending this, and the previous entries we have made over the years (which you may be able to access), we have been honest, sensible and stated evidence based facts at every stage, no sour grapes, just honesty which, you will find in short supply from many as you negotiate this nightmare journey.
Be VERY aware, you will need total and absolute dedication to the CHC task, AT THE EXPENSE OF many things you normally take for granted.
It will be hundreds of hours and pages of reports, a forensic understanding of the legislation and you will end up if you stick at it long enough, as experts in all things CHC which even then, is likely to be an unsuccesful joureey.
My father was recently awarded NHS Continuing Healthcare and until Jan this year I had never heard of it. The only reason they gave it to us was because I threatened to do something to put him and me out of our misery. I have spent 9 years looking after him even though 7 of that he was in Extra Care accommodation. The staff refused to do simple things like making a cup of tea in the evening or making toast with breakfast even though it was written in the care plan. He ended up so malnourished he body mass was not enough for his body to survive. He was in and out of hospital but never once until I threatened to harm him did they get off their backsides and help us. I am stunned at the care he is now receiving, but I am also worried that because he is so much better they will take it away. If they do we are back to square one with care staff who don’t follow care plans. I am in fear of what happens at the next assessment in a months time.
Hello Angela
Firstly thank you for providing such helpful information. Fighting for Continuing Healthcare (CHC) funding is hard but it can be done. I won my case and am helping a close friend with her claim. She has just gone through the appeal process. The appeal took placed before a so-called Multidisciplinary Team (MDT) but there was no representative from Social Services, only they NHS. My friend was told that it was not always possible to involve Social Services as it was difficult for them to get there. She could either have the appeal done now or wait a long time for Social Services to be free to attend. Then she was told that the minutes of the meeting would be shown to a member of their team who was from Social Services to see if they agreed with the decision. I suggested to my friend that she ask if she could be involved in the meeting they have with the Social Services person so she could see what Social Services say about the matter. But it looks like she will not be invited to that meeting (if there even is one). She will just be informed of the decision.
How can an appeal team claim to be a Multi Disciplinary Team if they are just made up of the NHS? Was it right that the appeal was carried out without Social Services being involved? The domain levels of need were examined – shouldn’t Social Services have been there to hear her case?
Thanks for your kind feedback on the book, Mark. I’m so glad it’s been helpful – that’s really good news. Well done for standing your ground. The flaws, errors and inaccuracies in care notes and assessment notes in this whole process is simply appalling. You may find this of interested in relation to charges for copies of medical and GP records: http://www.nhs.uk/chq/Pages/2635.aspx?CategoryID=68&SubCategoryID=160
My mum had an initial checklist assessment for CHC funding whilst still living at home and it showed she was eligible for a full MDT assessment. She suffers from Dementia, double incontinence , Hernia, COPD and Psoriasis. Unfortunately she was rushed into hospital 2 days before the MDT was scheduled. All of this information was passed on to the hospital staff and social workers, we decided that this was the natural brake and she needed more care that we could continue to provide at home. When her condition improved she was rushed through the system and discharged into a care home. We were horrified at the treatment and the refusal to complete an MDT in hospital. An MDT was eventually carried out 11 days after her admission to a care home. What a farce, we were constantly told facts that we have since found out to be untrue and all our objections were overruled by the NURSE ASSESSOR. On receiving the outcome of the MDT we were told she was not eligible. I was given this website address by one of my work colleagues and after a quick perusal we decided to purchase your book and it was invaluable in giving us links to other information and tips and hints. We appealed the decision and started to build our case. We systematically deconstructed the MDT and the failures leading up to the MDT. One thing we found invaluable in doing this was to get copies of the hospital records and GP’s records. It cost us £65 but enabled us to trace errors, omissions and possible conflict of interests. The system 1 notes from the GP which showed every interaction of every agency with my mum showed glaring errors and assumptions that had been made. At the appeal hearing we were met with 4 panel members who stated that they would review the MDT and decision and give us an answer that day. We were able to give dates, times, names and treatments which showed that the system was flawed and we were not going to back down without written responses to these errors. Another good website is https://www.whatdotheyknow.com. This is a freedom of information site were government bodies have to respond to queries by the general public. Showed how many people were successful in gaining CHC and how many appealed.The result was at the end of the meeting we were told they needed more time to review the information and we would get a reply within 2 weeks. Two days later we received a letter stating my mum was eligible for full CHC and all fees paid would be refunded with interest and any other costs involved would also be refunded. This would not have been possible with this sites help or the valuable information in your book. Mum says thanks very much. If you have the time I would suggest appealing every decision because the system is flawed and in some instances possible inept.
My mother had a brain injury 50 years ago shortly after my birth, leaving her confined to a wheelchair. She is paraplegic and has recently been diagnosed with mixed dementia. She is in a care home that deals with mental health issues and she constantly rings the call bell for the toilet, on average 50-60 times a day, sometimes more often. She has a rectal prolapse which could not be operated on due to her lungs not being strong enough to cope with the anaesthetic. She gets extremely aggressive, accusatory and frustrated and has recently attacked care staff. I applied for Continuing Healthcare and was amazed when the mental health team came to speak to her and said they didn’t find a problem with her at all, yet the care home knows what she’s like on a normal day. Social Services and the mental health team should surely go by what the care home say rather than a lady who has had brain surgery and has been diagnosed with mixed dementia? The DST has been sent off and a meeting has been set for next week but even though she scored two As and 5 Bs, they say they don’t think she is eligible! Please let me know what I should do. The meeting is next week!
Thanks for your comment, Vicki. I imagine it’s a very difficult situation for you right now. I frequently hear similar accounts from families where obvious needs are completely overlooked, and/or the assessors ignore what they’re being told. It can be so frustrating. You mentioned that your mother scored two As and 5 Bs. This is the Checklist assessment (the first stage). The full assessment uses scores such as Severe, High, Moderate, etc. Two As and 5Bs is enough to get through stage one and on to the full assessment. This may help: http://caretobedifferent.co.uk/what-are-the-different-stages-of-nhs-continuing-care-assessment-and-appeal/
My 76 year old mother is physically fit but has severe mental health issues that are not linked to old age. She has suffered with depression and anxiety for over 25 years and a one point was admitted to a mental hospital. She recovered sufficiently and her illness was well managed and she lived a good quality life with my father. However, my father died unexpectedly last year and my mother had a complete nervous breakdown. She is under the care of adult social care and is on a lot of medication. She was finally admitted to a residential home as she was too ill to remain alone. She has been in and out of the home when her illness has been severe and this has been paid for by adult care. Now we have been told we have to pay even though I feel her mental illness is a primary health issue and nothing to do with her age. I have looked at the DST document and feel that she does have a case for nhs funded care. What could you advise?
If you feel she may be eligible for NHS Continuing Healthcare. Rachel, then it’s vital to get the assessment process started. This may help: http://caretobedifferent.co.uk/what-are-the-different-stages-of-nhs-continuing-care-assessment-and-appeal/
My husband has dementia and i am trying very hard to keep him at home. he is 78 years old and I am 77 years old no family to help me. I have been told I can have 6 weeks a year rest bite and have to pay £123 towards it which I don’t mind at all as I don’t get much sleep so that will do me good but I have been told by a friend that I’m allowed 6 weeks free before I start paying but my social worker isn’t very helpful and never rings me back if I ask anything so I just wanderd if this is true.
Barbara – you may find this page on the NHS website helpful: http://www.nhs.uk/Conditions/social-care-and-support-guide/Pages/breaks-for-carers-respite-care.aspx – plus some of the links on this page of the Alzheimer’s Society website: http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=140
My husband as dementia – could you tell me if he can get so many weeks a year free respite care.
My very active mother retired in 1997 at the age of 71 and was formally (finally) diagnosed with vascular dementia (probably as a consequence of persistent atrial fibrillation/warfarin/falls) in June 2006 after years of ‘forgetfulness’. She was moved into a care home in June 2008 when she was incontinent, unable to answer anything but closed questions or look after herself in any way. I was advised at the time that unless she entered a nursing home being cared for by a registered nurse, no help with fees would be forthcoming and it was only after hearing the ‘Moneybox’ article in 2012 did I realise this was wrong and made a retrospective Continuing Healthcare claim. Unfortunately I had few records to fall back on because I did not know they would become necessary, and the care home have lost many of their records. I have personal diaries which prove the NHS DST contains errors and omissions of hospital admissions and details of other ongoing health issues.
A Local Appeals (Scrutiny) Panel have just confirmed they agree my mother is ineligible for funding for the period to 3 October 2011 when she was fully self-funded but they agree she qualifies for the period 4 October until death on 11 April 2012 which coincides with social services part-paying because her money had been spent! I was amazed when the panel explained at the outset that they were not there to consider any legal issues, only health issues and the DST. They pointed out that an Independent Panel will look at the case the same way, as will the Ombudman so they advised me to take my case to my MP (who will only ask them what they think).
Can I short-circuit this by getting my case into court somehow – judicial review perhaps? I would prefer to pursue my case based on the law as I understand the National Framework has no backing in law and is only guidance, whereas the law (NHS & NA Acts) is quite clear.
Do you know of any cases which have gone down this route and any rulings which have emerged? The panel told me no-one has sought a judicial review of the application of the National Framework and DST which I find surprising, and were unimpressed by my references to Coughlan and Grogan. Cheers.
Hello! I would appreciate assistance on the ‘double scoring’ issue. Can anyone indicate relevant paragraphs within the guidelines or any successful appeal that may be helpful on this point? Many thanks, Nicola
Have a look at the Decision Support Tool document page 13, paragraph 25: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213139/Decision-Support-Tool-for-NHS-Continuing-Healthcare.pdf All needs should be recorded in whatever domains they are relevant. I have known some assessors try to put as many needs as possible into one domain, so that the others by default receive a low score, e.g. saying that the needs of someone with severe dementia are all due to their cognitive impairment and so pushing all the needs into that domain. This is not correct.
I have lodged a complaint against the hospital which did a CHC assessment on my husband without telling me exactly what the significance of “an assessment” was. They had stated that I had been invited to attend when I had not, and that I had not attended. They got the medical diagnosis wrong, made false accusations that I had said I couldn’t care for him and finally, that I had had the decisions (in the DST) discussed with me and that I agreed with them. The discharge coordinator had read out bits of the DST and had informed me that my husband had no healthcare needs.(He has advanced vascular dementia, is doubly incontinent, cannot weight bear and must have his needs anticipated) I have not received a letter informing me of that decision. I have had no chance to give my opinions and did not see the DST until I bought a copy of it. They agreed a nursing need before the DST was done. They are either devious or incompetent- possibly both.
Devious, incompetent, lacking in training, indifferent, being ‘leaned on’ to deny funding – all of the above, I suspect. I have also heard from someone ‘on the inside’ that assessors are encouraged by their managers to break the rules…
just to say, I bought your continuing care book and was inspired to ask for a checklist assessment. Unfortunately the assessor was hostile, un-professional, agressive in manner and I now have lodged a complaint about it. I would just like to ask you about two points that I thought the assessor was fudging on! How far back can evidence go? I tried to present some examples of a couple of weeks previously and the assessor said that was not allowable as it was not the’here and now’. Also the asterisked domains, the assessor was adament that mum could not score an ‘A’ in more than 1 asterisked domain as it would be ‘double scoring’? I haven’t heard of that before and am wondering if it’s just another tactic to produce low scores??
Thanks for your comment Judith. We’d need to look more closely at your case to provide advice, but presenting evidence from a couple of weeks before should be perfectly OK – as would evidence from further back than that. The point the assessor made about not scoring more than one ‘A’ also does not seem valid, and may well be an attempt to reduce the scores incorrectly.
Many people are also told it’s ‘unlikely’ funding will be awarded – even when the health needs make it obvious they should qualify. http://caretobedifferent.co.uk/the-7-most-outrageous-reasons-for-not-receiving-an-nhs-continuing-care-assessment/
So much goes on in Continuing Care assessments that is in breach of the guidelines, and it’s only when families become more informed about the process that they can pick up on and challenge the ‘mistakes’ being made.
Ian could I please ask what your MIL’s health care needs are. We have a 97yr old uncle with severe dementia. He is doubly incontinent, can’t weight bare, stand or walk and has to be lifted in and out of bed and his chair with a hoist. His communication skills are almost non existent. Some days he can feed himself and some days he can’t and he has to have soft foods as he can longer chew. We have been told that it’s extremely unlikely that he will qualiy for NHS continuing care funding. We are appalled with the whole funding situation
Judith – about the same as your uncle -her eating has improved now in a care home. I imagine he has or is at high risk of skin problems too as he cant weight bare. Dont give up and dont believe comments. Print off the forms and start working through them and read the nursing notes next time you visit. Get as quantitative as you can rather than qualitative -have they done various risk assessment scores for falls, skin problems etc – e.g Walsall, Mores, Barthel, Bordwin etc? -and if not why not!! It is very hard but don’t take “no chance” for an answar.
i had to wait until my mother had passed away to be granted continuing care, although we had argued she need it for being in hospital. They also moved her to a care home without telling us.