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:
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:
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:
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:
2. Nutrition – Food and Drink
4. Skin integrity (including tissue viability)
7. Psychological and emotional needs
10. Drugs/Medication/Symptom control
11. Altered states of consciousness
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:
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:
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!
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.
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