10 Common Issues Affecting Families seeking NHS Continuing Healthcare Funding

10 Common Issues Affecting Families seeking NHS Continuing Healthcare Funding

Jane recently posted a comment which we wanted to share with you. She writes:

“I applied for CHC for my dad who, through my hard work and determination returned him home after a short but disastrous 6 weeks 21/2 years ago in a very highly rated home! He has Alzheimer’s, can be very aggressive and now needs to be fed, is doubly incontinent, we have the best Carer (private) as the system failed us massively in providing care! My mum also suffered from dementia! I applied for CHC for them both in December 2019 and Jan 2020 respectively! My mum’s health was failing fast! She died on 6th April – she had to be fed, had an ungradable sore (acquired in hospital) and was on oxygen and was doubly incontinent requiring regular manual evac [evacuation]! I watched my mum decline rapidly and yet neither were accepted for CHC! I’m not sure how dead a person needs to be to qualify but now I’ve experienced rebuttals and closing rank after appealing! I know it’s wrong but I am also tired of fighting and worry for my dad’s future that has been threatened by his GP in a veiled way. I’m beginning to wish I had never applied [as] mum suffered immeasurably because of my application and appeal, I firmly believe that, there is no other reason for her disgraceful treatment from DNS and GP – I’m saddened and disgusted 😢 my last communication said that no appeals would be accepted due to Covid 19! What kind of messed up system is this? They have paid for every ounce of their care and are by no means well off! Social workers don’t seem to want to know, they all sing from the same hymn sheet in this area it seems.”

Thank you, Jane, for sharing your personal comments with us about your dear parents and the struggles you have faced.

Your comments raise a number of interesting issues which may be helpful to our readers who are at different stages of their journey, whilst seeking eligibility for NHS Continuing Healthcare Funding (CHC) for a spouse, parent or relative:

1.  Lack of Consistency:

Over the years, many readers have commented on our Care To Be Different website, that applying for CHC Funding is both complex and frustrating, and the outcome is unpredictable. There is often is a fine dividing line between those who get funding, and those who don’t. The assessment process is subjective and therefore prone to inconsistencies, flaws and errors. National surveys indicate that some parts of the country are more likely to award CHC Funding than others and has been referred to as ‘the postcode lottery.’ More needs to be done to make the whole process fairer, more transparent and consistent throughout the country.

Read our blogs:

When are the Government going to fix CHC?
Is the National Framework still working effectively?

2. New to CHC Funding?

Firstly, you need to understand the vital difference between healthcare vs social care needs.

  • Healthcare needs are provided by the NHS – free of charge – and include social care needs and accommodation. Healthcare needs are NOT means-tested – so your wealth should never be a consideration.
  • Social care needs are provided by the local authority (via Social Services) and ARE means-tested. So, if you have assets, savings or a home, you may have to pay for some or all of your care.

Unfortunately, many people who have not visited our website just don’t grasp this concept from the outset, and will embark on a lengthy CHC battle only to become frustrated when they eventually find out that their relative’s needs are clearly social care needs and simply don’t meet the eligibility criteria for CHC Funding; or else, unwittingly, get corralled down the route of social care assessments (and means-testing) and end up paying for care unnecessarily – when in fact they were CHC all along.

For more information about what constitutes healthcare needs and social care needs, read our blogs:

Part 1. Explaining The Vital Difference Between Social Needs vs Healthcare Needs
Part 2 – Explaining The Vital Difference Between Social Needs vs Healthcare Needs

3. Primary Health Needs

Eligibility for NHS Continuing Healthcare Funding is NOT about a particular condition or diagnosis, such as Alzheimer’s or dementia. It is about the complexity, intensity and unpredictable nature of those needs and the level and type of care that is needed to meet them. There are claims companies who may tell you that having a diagnosis, or a label for a particular condition is everything, but that isn’t the case. Eligibility for CHC is all about proving that your relative has a ‘Primary Health Need’. In simple terms, this means that they have complex, intense or unpredictable healthcare needs that are not incidental or ancillary to the accommodation your local authority is under a duty to provide and are not of a nature typically provided for by a Social Services. For more information about the Primary Health Needs approach, read our blog:

Apply for NHS Continuing Healthcare Funding if your relative has a ‘primary health need’…

4. The 12 Care Domains

Jane lists a number of medical issues that have affected her parents, including, Alzheimer’s, aggressive behaviour, incontinence (and manual evacuation), skin integrity (ungradable pressure sore), breathing problems (need for oxygen). These, and any other conditions, should all be assessed by the Clinical Commissioning Group’s (CCG) assessors at a Multi-Disciplinary Team (MDT) assessment and be recorded in the Decision Support Tool (DST). The DST comprises of 12 Care Domains, namely:

1. Breathing
2. Nutrition – Food and Drink
3. Continence
4. Skin integrity (including tissue viability)
5. Mobility
6. Communication
7. Psychological and emotional needs
8. Cognition
9. Behaviour
10. Drugs/Medication/Symptom control
11. Altered states of consciousness
12. Other.

Each Care Domain is ‘scored’ and the corresponding level of need is stated in the DST. The CCG’s assessors should look at your relative’s overall healthcare needs holistically and in conjunction with the 4 Key Indicators (Nature, Intensity, Complexity and Unpredictability) when reaching their decision as to whether your relative has a Primary Health Need and is eligible for CHC Funding.

For more  reading around the subject, look at these blogs:

Has your relative been ‘made’ incontinent and developed a pressure sore?
PART 1 – Looking At The 4 Key Indicators: Unlocking the Basics
PART 2 – Looking At The 4 Key Indicators: Gathering pieces of evidence
PART 3 – Looking At The Four Key Indicators: Completing the Jigsaw
PART 4 – Looking At The Four Key Indicators: Drafting Your Conclusions

5. Closing Ranks

Sadly, Jane’s feelings are not uncommon. Many readers have previously told us how they feel let down by the whole CHC assessment process and believe that it is unnecessarily complex, unduly subjective and slanted in favour of the NHS.

Unfortunately, most GPs and medical practitioners who are not closely involved with the CHC process have little knowledge or understanding about it either, or the issues that affect families on a daily basis.

Social workers usually form part of the MDT assessment panel as a requirement under the National Framework for NHS Continuing Healthcare Funding 2018 (see paragraph 120). However, as with the CCG’s assessors, much depends on their training in the assessment process, understanding of the National Framework and their personal knowledge of the patient they are assessing. For some, it may be their first MDT assessment, and understandably, they may be taking their lead from the more experienced CCG appointed assessor (who may have an eye on budgeting).

6. How ill do you have to be to get CHC Funding?

Jane’s comments “how dead do you have to be…” are a typical reaction, echoing the sheer frustration expressed by many readers who cannot understand why their relative doesn’t qualify for CHC Funding – when their needs are clearly of a complex, intense or unpredictable nature that would justify funding! Remember, eligibility for CHC is all about healthcare needs. So, if you think your relative is eligible, you must pursue their right to a fair and robust assessment for funding and take it to appeal, if necessary. Read some other myths that people have been told about CHC Funding:

17 untruths about NHS Continuing Healthcare funding – Part 1
9 more untruths about NHS Continuing Healthcare – Part 2
The 10 Most Outrageous Excuses For Not Having An NHS Continuing Healthcare Assessment

7. Tired of fighting the NHS? Is the process wearing you down?

The CHC assessment and appeal process can be lengthy and tortuous. There are often long gaps waiting for the MDT and then for the outcome decision to be sent out, and then another lengthy wait for your appeal to reach Panel, followed again by a long wait for that outcome decision to be communicated to you. The process from start to finish should, theoretically, take months, but instead it is taking years! Many families lose patience and give up. Those that dig in for a fight can expect to wait years until a final outcome. In the meantime, they can be forgiven for feeling that they have been failed by a system that is supposed to support them yet leaves them angry and frustrated. You can, of course, get professional advocacy support at any and every stage of the assessment or appeal process, to help take strain off your shoulders. If you want help or wish to discuss a matter with a professional adviser, visit our one-to-one page. We applaud Jane, and all like her, who keep battling for CHC Funding. However difficult and time-consuming it may be, don’t give up! For inspiration, and an example that determination and perseverance pays off, read Admiral Mathias’ story:

‘Fighting for NHS funding for my mother was as complex as my work on the nuclear deterrent…’

For more reading around the subject, look at these blogs:

Part 1 – Revealing Insights From A Continuing Healthcare Nurse Advocate…
Part 2 – Revealing Insights From A Continuing Healthcare Nurse Advocate
Don’t Give Up When Faced With Ongoing Delays
Frustrated with CCG delays? Here’s how to complain

8. Dealing with Appeals

The appeal process can be daunting for families, even for seasoned veteran campaigners like Admiral Mathias. But to succeed, you have to persevere. We have written many helpful blogs on tackling the appeal process, depending on whether you are appealing an MDT decision to a CCG’s Local Resolution Panel or to an Independent Review Panel (IRP) conducted by NHS England. Of particular mention, is a very informative blog kindly prepared by a Chair of NHS England panel to help readers understand the appeal process and what goes on at the meeting:

An exclusive Q & A interview with an IRP Chair – a rare insight into conducting your appeal and knowing what to expect on the day.

Here’s some more reading on appeals which you will find useful:

Attending an Assessment or Independent Review Appeal?
Rejected for CHC Funding? Part 1: How To Appeal The MDT Decision
Rejected for CHC Funding? Part 2: How to appeal the Local Resolution Decision
Battling NHS delays – join the queue!

9. COVID-19

Unfortunately, COVID has caused immeasurable delays in both MDT assessments, CCG appeals to Local Resolution Panels and with appeals to NHS England. Most have been on hold for some time whilst the NHS understandably refocuses their attention to battling coronavirus and redeploys key staff to the front line to help with hospital patient discharge.

During lockdown, we hear that some CCGs have been conducting appeals by telephone, and similarly some IRPs have gone ahead, too – albeit in limited numbers.

We agree with Jane, that more needs to be done to process these outstanding appeal cases expeditiously. But, at present, it is difficult to foresee how long it will take to clear the huge backlog of existing assessments and appeals, never mind deal with the new ones currently waiting to fill up the pipeline.

Some positive news!

We have recently heard from one CCG “that under the Restoration and Recovery programme, the CHC team are hoping to recommence Local Resolution Panels towards the end of August 2020, assuming all critical personnel are back in their substantive posts, following re-deployment in response to the introduction of the Covid-19 procedures.  It is expected that when panels recommence, they will be undertaken virtually via MS Teams, in recognition of the social distancing measures and therefore the limitations of face to face meetings. We anticipate undertaking cases in date order dependent on when rationales had been received. Any previously booked Local Resolution Panels that had to be cancelled at the start of the emergency response to Covid-19 will take priority.”

10. Interim Funding – Discharge from hospital and resuming healthcare assessments

Here is some more good news that we can share with you, taken from part of a recent letter from Sir Simon Stevens, Chief Executive of the NHS to CCGs.

“The Government have recently announced that it will continue to provide funding to support timely and appropriate discharge from hospital inpatient care in line with forthcoming updated Hospital Discharge Service Requirements. From 1 September 2020, hospitals and community health and social care partners should fully embed the discharge to assess process. New or extended health and care support will be funded for a period of up to six weeks, following discharge from hospital and during this period a comprehensive care and health assessment for any ongoing care needs, including determining funding eligibility, must now take place. The fund can also be used to provide short term urgent care support for those who would otherwise have been admitted to hospital.

The Government has further decided that CCGs must resume NHS Continuing Healthcare assessments from 1st September 2020 and work with local authorities using the trusted assessor model. Any patients discharged from hospital between the 19th March 2020 and 31st August 2020, whose discharge support package has been paid for by the NHS, will need to be assessed and moved to core NHS, social care or for self-funding arrangements.”

Here are some previous blogs concerning the impact of the COVID crisis on CHC Funding.

COVID: How Will Backlogs Impact on NHS Continuing Healthcare Funding?
COVID-19 – The Impact on NHS Continuing Healthcare Funding (‘CHC’) and How The Current Changes Will Affect You!

Leave your comments below…

10 Comments

  1. Helen 1 week ago

    My mum has had parkinsonisms for last 5 years but in February this year very suddenly lost the use of her legs and was hospitalized for some time with no definite diagnosis. Up to then she was independent and cared for my dad.Her neurologist believes it is something separate to her parkinsons as such a sudden onset and further tests are arranged. She is now bedridden and pays privately for two carers 4 times a day who use a hoist for toileting on a commode . No one attends at night so she can’t move or turn in bed. She can’t get up to use toilet or go and get herself a drink or something to eat. We’ve had to convert a downstairs room for her needs…and there she stays. I’m confused whether she would qualify for CHC. On discharge from hospital she was in a rehab suite in a care home for a month where she had a bit of physio but that’s all stopped since home. How can I find out if a CHC checklist was done in hospital? All she had was a form from social services asking if above threshold for funding – which mum is.
    My dad is disabled, deaf, has COPD with mild dementia and has a carer that they also pay privately for three times a day – however, one session is funded (possibly NHS as ongoing??) but again we have no paperwork with reports or decisions to refer to. He isn’t really as bad as mum either in scheme of things – he can at least stand up with help. He’s in and out of hospital all the time for chest infections/UTI’s. Will the hospital or Social services have copies of any checklists/reports. I am so confused! Thanks in advance for any advice.

    • Hi Helen,
      Your mother should have received a medical discharge summary, when leaving hospital, this gives a primary diagnosis and the results of investigations and a clinical summary for her GP. If you don’t have this, then I suggest your mother asks her GP for a copy.
      I am making an assumption that you have power of attorney for both you parents? In the present situation I am also assuming that both have been shielding? If this is the case, then it seems reasonable to ask their GP for help.
      I would use the form from Social Services as a way forward in making contact with them, to tell them that the financial assessment will NOT take place until a NHS CHC checklist/assessment has taken place for both your parents to determine if they are eligible.
      I would also urge you or your mother to contact the care home and ask for a copy of her file and care notes, whilst she was resident. As it was recent, this shouldn’t be difficult to obtain.
      With the deterioration in your parents health, Social Services can not know if they are eligible of not without a checklist taking place first.
      I would also be contacting CHC/CCG for your area and asking them for help. You’ll need to be persistent and determined and make it quite clear, just how much your parents are at risk, as their health has deteriorated significantly.
      Read as much as you can about CHC and the National Framework.
      There are lots of good folk on this site, with lots of experience are to advise you.
      Take care and Cood Luck!

      • Helen Bowen 4 days ago

        Thank you very much for your advice. I’ve applied for PoA for both parents and currently being processed. All it says on mums discharge summary is ‘mechanical fall in shower’. I am reading as much as I can including the framework for CHC . I am amazed how many people have been commenting on here about the absolute shambles this whole process is! Thanks again for your reply, you’ve been very helpful

        • Care to be Different 4 days ago

          Do get in touch if you would like to see if we can help with your situation. Kind regards enquiries@caretobedifferent.co.uk

        • Hi Helen,
          “Mechanical fall in shower!”, for your mum who has been diagnosed with Parkinson’s disease for 5 years or more!!!!
          My father suffered from Parkinson’s and every fall he had was attributed to his severe mobility issues, associated with with the disease.
          Mechanical fall, implies that something in the shower caused her to fall? Did she slip on the soap? Do you know exactly what happened?
          To loose use of her legs and be hospitalized, sounds like there is a lot more going on neurologically, than just a”mechanical fall”. The discharge summary sounds very poor and something I would be investigating further and taking it up with your mum’s neurologist.
          I agree with Pat’s comments, you should be demanding that both your parents are assessed.
          You have my admiration caring for two parents in their home, who are clearly in need of 24/7 nursing care.
          The more you read about CHC, the less you will be confused! Don’t let social services bamboozle you over financial assessments. Both your parents need to be assessed for CHC, starting with a checklist.
          Good Luck!

    • pat harden 1 week ago

      Helen you should have been involved with any assessment . ring the local CCG and find out if one was done . if not get SS should not be asking for financial info until you have in writing that they are not eligibly . [ ask for both to be assessed ..they can get CHC in there own home it is not just for nursing/ care homes any where .don’t let them say you cant get it at home .if mum has detirated that quickly then she could get fast track funding .her neuro should have done this .can you rig them and ask for one to be done .this is just one form and has to be approved and funding in place with in 48 hours .if not the check list can be done by any medical person perhaps district nurse .gps dont normally get involved but they might do .

      • Helen Bowen 4 days ago

        Thank you very much Pat. Your advice is very helpful. I’ve written to PALS at the hospital but will take your advice and contact CCG. Somethings just not right! Thanks again.

  2. whole CHC process is corrupt! All agencies are fleecing ! the vulnerable elderly in our society by maxing out ! on their capital and assetts – even In End stage decline! and or rapid deterioration !!
    not being timely assessed! so being made to pay Even for their own nursing care!! and going long periods without reassessment. Their primary health care need – Repeatedly marginalised! as are the associated risks to life ! and safety and wellbeing – dangers/risks / falls and falls injuries – played down !!! Even when coming to repeated avoidable harm!😖

    even when receiving chemotherapy and symptom control and u recognise rapid deterioration in ur dying parent long before care home staff SW or CHC assessors do!!!!!!

    In what way is this social care!!!!!!!

    What a complete and utter devoid of compassion empathy and humanity – is this retrospective CHC review process that stone walls obstructs denies and repeatedly cold shoulders grieving relatives!!

    I am appalled by the indifference!!!! of local CHC assessors and appeal nurses – who Deny deflect and defend the untimely reassessments , give no continuity in subsequent appeals and give u a complete runaround frankly!

    Daylight robbery of the vulnerable elderly – Sir /Lord Bevan Is turning in his grave !!! with the total injustice ! of depriving those with long term disability and primary health care need – their absolute right to care free at the point of clinical need!!!! shame on them I say !!!!!!!!!

  3. S Baker 3 weeks ago

    The Staff Nurse who carried out my late mothers NHS CHC prescreen assessment lied on the form stating that next of kin had attended the assessment. I am next of kin. I was out of the country and have my travel documents as evidence. As a result my mother did not qualify for the next stage and was ousted out of hospital and into Social Care at the expense of the LA and her own means combined. The care was not suitable and she had appalling treatment and several moves as social care was inadequate. This was nothing more than a bed blocking exercise to get my late mother out of hospital. I am taking this matter up with the hospital concerned but as it happened in 2012 and has only just come to my notice via council documents that have come into my possession, I am not sure what redress I will be able to pursue. Disgraceful!

  4. Jane 3 weeks ago

    I have been through all this on behalf of my husband. Initially we were successful, but upon review last year, CHC was taken away from him and as you can imagine he has declined over the twelve years so far. He cannot do a thing for himself and is too weak to be aggressive. I was patients advocat for him and appealed on his behalf, but the CHC wording doesn’t really allow for much and it seems the goal posts have moved. The person really does need to be as near death as possible before CHC is considered. It’s all down to money at the end of the day.
    You don’t need to pay solicitors to fight your case.
    My husband is now considered social care as opposed to NHS.

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