NHS Continuing Healthcare investigations: What to send?

Published 25/11/2016

Please note: This article was published prior to July 2022, and some information may be outdated.

Potential investigations into NHS Continuing Healthcare…

Some of you have previously sent complaints and concerns about NHS Continuing Healthcare to the National Audit Office (NAO). The NAO is now moving Continuing Healthcare up their agenda and is going ahead with some scoping work on the problems in the Continuing Healthcare process in England.

This work, which is likely to start early in 2017, will help them decide whether to publish a later investigation on the topic.

NHS Continuing Healthcare investigations

As in many bodies like the NAO, researchers will draw on information that is available relating to problems in the system. There can be few people who know more about problems in Continuing Healthcare than the families of people in care – and of course individuals who need care themselves.

It’s vital, therefore, that not only does the experience of these families get into the hands of those who can investigate, but also that the information actually makes an impact.

We’ve had several requests for guidance on what exactly you should send in such an instance, so here are some tips:

Sending concerns about Continuing Healthcare to public bodies

If you’re sending your concerns and complaints in this respect to a public sector body (for example the NAO), keep in mind the bigger picture.

For example, an organisation like the NAO may not want all the intricate details about your own relative’s specific care needs. Instead, they can probably make better use of information that helps paint a bigger national picture, e.g. examples of maladministration in the assessment and appeal process that are likely to affect many other families too.

If they receive lots of correspondence from many different people who are highlighting the same or similar problems, the impact is likely to be greater.

Make it as easy as possible for the person at the organisation who will be reading your correspondence to grasp the severity of the national situation.

Continuing Healthcare process

So if the context is a national one, i.e. it’s the wider Continuing Healthcare system that is being scrutinised, rather than your relative’s own individual case, consider including examples of the following (if they apply to you):

failure by assessors to follow Dept. of Health guidance (National Framework, etc.)
failure to uphold case law (e.g. the Coughlan case)
failure to follow individual points in Continuing Healthcare guidance, e.g. incorrectly focusing on managed needs instead of underlying needs, failing to involve the family, using incorrect assessment forms, altering assessment scores behind closed doors, ignoring evidence, intimidation, threats and obstruction of the process – the kinds of things that many, many families report, and which many families share on our blog
failure to provide adequate information to the family about the process
failure to carry out any assessmnt at all and/or attempts to put the family off right at the start
attempts to force a person to pay care fees before the proper assessment process has been followed
lack of appropriate knowledge and training on the part of assessors
…and so on
…and so on.

There are often many issues to highlight, as the articles and comments on this website show. (Of course, only highlight those relevant to you.)

So keep in mind that, whilst you’re using your relative’s case as the basis for what you’re sending (which is important), the points you’re making are for the greater good, rather than for getting your relative’s own individual case resolved at this point in time.

Interpretation of eligibility criteria

You might also want to highlight how assessors have failed to correctly interpret the Continuing Healthcare eligibility criteria. Again, make it as relevant as possible to the bigger picture.

For example, if the score in any given care domain in an assessment is obviously far too low, you may want to highlight a seeming deliberate attempt to play down care needs and deny funding – rather than including a long detailed account of all of your relative’s care needs in that domain.

In addition, if you have a combination of scores where it’s pretty obvious that Continuing Healthcare funding should be awarded and yet it’s not, highlight the failure by assessors to properly interpret those scores – rather than writing a detailed account of the conversation that took place in the assessment meeting.

Remember that researchers are busy people and they have a lot to read, so make the information you send as impactful as possible.

The difference between information that highlights the bigger picture and information that highlights your specific case is a subtle one, of course – and both are important – but keep in mind always the primary purpose of the information you’re sending.

If you have any further tips to share about how you’ve put together information in this context, please do add a comment, as it could help many other families.

Thank you.

Note: National Audit Office – Although there’s no firm guarantee about an investigation into Continuing Healthcare, the more information they receive now the more likley they are to take this forward with concrete action. Contact Jenny George, Director, Health value for money studies, Email: Jenny.George@nao.gsi.gov.uk (Please don’t send your correspondence to Care To Be Different; instead, send it to the NAO.)

Tagged Categories: CHC eligibility, CHC essentials, CHC funding, NHS Continuing Healthcare, Reclaiming care home fees

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7 Comments

George W Smith February 27, 2017 at 3:18 pm

I am 89 years of age and my wife is 69.
In June 2016 my wife suddenly started losing her memory and she was admitted to hospital where she was treated for sodium deficiency and discharged back to me.
She gradually got worse and had to return to hospital in May where they diagnosed with hypothermia, and again sent back to me after two weeks.
She began to have panic attacks occasionally.
The following 3 months she got to the stage where I was beginning to find her very hard to manage.
Then in September she had a massive seizure, and after 24 hours in hospital they discharged her back to me.
Her local doctor assured me the seizure was a one off and wouldn't happen again.
One night she managed to leave the bungalow and the police searched the area with helicopter and search parties.
I managed her until December when her doctor sent an assessor from the surgery to talk with us and it was decided they would get her into hospital.
On my wife’s discharge I was called to a meeting of the consultant a NHS senior nurse and a Social Service worker.
The consultant said my wife had dementia, but no one else agreed with him and there were words between the NHS nurse and consultant, but he stormed out of the room still insisting dementia and 'Discharge her, discharge her'.
With my wife being unmanageable for me the NHS nurse and Social Services worker told me to leave it to them to find a place for her.
My wife was placed in a Residential rest home and was violent a few times.
During her stay she was examined by experts from another hospital and told me she didn't have dementia but something unusual had happened with her brain and couldn't diagnose it.
February the home had to call the police and they took her to hospital. The rest home refused to take her back and my wife was classed section 2 into a mental hospital where they agreed she has no dementia, but memory loss.
Social Services have sent her a bill for 831.50 for 7 weeks and 1 day in the rest home, They have it billed it by taking all of her pension with no deductions.They said I didn't send back the Customer Financial Statement, but I couldn't as the NHS nurse at the rest home said the Social Services wouldn't accept my wife's signature. I rang them but they insist I get her assessed for capacity then sign it and send it in. But I have my reservations on the outcome of a capacity test.
What are my options? Our pensions are paid in to a joint current account to pay rent utility bills etc. They were all paid as direct debits with part of my wife's pension.
What worries me, is what will happen March 16 when she is due out after 28 days?
George W

Jennie January 2, 2017 at 5:00 pm

My friend secured Continuing Healthcare for her father for a couple of years. How? She is a GP, couldn't run rings round her could they?? He had dementia , her specialism. Her father was mobile and even occasionally went for tea at hers, went out etc. My mum was bedbound with virtually no life quality and in contant pain. Fair? absolutely not!!! Me i'm just an admin clerk (NHS) with a local resolution meeting at the end of this week. Run rings round us, watch out......

Richard December 19, 2016 at 3:50 pm

I think now it is very difficult to obtain continuing healthcare. My mother has advanced dementia and didnt qualify despite being sectioned, and my father, who went in to hospital with terminal lung cancer, initially received it but this is about to be withdrawn. The ridiculous matrix they use seems to stand good these days. It's wrong- yes of course it is. But that seems to be the way it is. And I would suggest at this stage that raising people's hopes otherwise-even though well meant, is perhaps unwise.

Angela Sherman December 21, 2016 at 8:24 am

Richard - it certainly can be difficult, and I understand your concerns. On the other hand, every week we hear from people who have succeeded in securing Continuing Healthcare funding for their relatives. They may have faced a battle to get it, and it may not have been easy, but it is still feasible to get through the process and succeed. The National Audit Office may do an investigation, and it may being change. Equally, it may not. But while there's another way to bring pressure on those who hold the purse strings, people may feel it's worth pursuing. If you have the energy, appeal your parents' cases. It can be hugely frustrating and exhausting, but it's possible to succeed. I know this not only from my own more recent experience but also from the many, many families we have helped.

F J Wood December 13, 2016 at 3:57 pm

My mother went into a care home in Jan 14 after 12 weeks in hospital the local council made a deferred payment plan until I got Gaurdship to release funds, at that time I had make full payment of care at £1000/week, I had Continuing Care Assessments undertaken on a regular basis and over 18months she deteriated to the point where she was incontinent totally immobile and needed assistance with feeding ie a living corpse but the local council still stated she did not qualify for Funding when she died I had paid over £100,000 absolutely disgusting . how do you qualify that's the piont

Angela Sherman December 21, 2016 at 8:26 am

F J - Your mother should have been assessed for Continuing Healthcare (CHC) before the council set up any kind of deferred payment plan and before they asked any questions about your mother's money. Were you involved in the CHC assessments?

Chris-G November 29, 2016 at 9:43 pm

High all,
This is all very well but other than an assurance of filing the correspondence that I sent, back in April 2016, The Director of the Health Value and Money Audit wrote:-
'You said in your email that complaints are marginalised, so I thought it might be useful to outline how you can take your complaint further, if you have not already done so. I understand that, as part of the NHS continuing healthcare assessment process, patients and their families or representatives may challenge a decision about eligibility through their clinical commissioning group’s ‘local resolution procedures’. If you have already used these local procedures and are still not satisfied with the decision, you are entitled to attend an Independent Review Panel, which will examine the decision made by your clinical commissioning group and the procedure it followed in reaching its decision. My understanding is also that, if you are not satisfied with the outcome of the independent review, you then have the option of referring your case to the Parliamentary and Health Service Ombudsman, which may investigate complaints about NHS continuing healthcare funding. More details are available at http://www.ombudsman.org.uk/make-a-complaint/complaints-about-continuinghealthcare-funding.'

In fact my main thrust had been the unlawful placing of financial burdens upon patients and the county council taxpayers so that NHS budgets could be supplemented in an unlawful manner. (Very easy to audit if I can see it happening).
I do not have much faith in this occurrence unless very many more of us correspond in the manner that Angela Sherman has outlined.
Even so. Once again an elevated official has failed to understand that appeals against funding decisions are not complaints. Complaints must be made separately to two bodies and cause a multiplication of the effort that many struggle achieve with success, in the singular. Such complaints not forming part of the appeals procedure either.