Personal thoughts on the state of NHS Continuing Healthcare
This week’s article is on the problems many families experience with NHS Continuing Healthcare.
Plus – 5 tips to help you keep going when the going gets tough…
I recently received one of the saddest messages I’ve read since setting up Care To Be Different.
It was from a gentleman in his 80s who was struggling to cope. He was in poor health and was being pushed from pillar to post by people within the health and social care system.
He reported being on the receiving end of lies, bullying and coercion.
What made his message particularly heart-rending was that it was not about his own care but about his wife’s, who was dying.
Over the years since setting up Care To Be Different, I’ve had direct contact with around 1,500 families, most of whom have been battling with NHS Continuing Healthcare assessments and appeals in some way.
I’ve been in their shoes and I know how hard it can be. The more I read about what still goes on in care funding assessments the more I feel moved to write about it.
NHS Continuing Healthcare funding is NHS funding for people who need full time care primarily for health reasons. It covers the full cost of care. There is an assessment process to determine whether a person has what’s called a ‘primary health need’ (A ‘primary health need’ is just a concept.)
However, many families find themselves going through a lengthy, harrowing and adversarial assessment process to obtain the full funding their relatives are entitled to. Many also feel shocked and betrayed at the tactics used against them. Even just a quick glance at the comments from families on the Care To Be Different website and on other blogs and forums makes this very clear.
This also often comes at a time when the family is already in emotional anguish because someone they love is deteriorating. Many express the palpable anger and despair they feel at the hands of a care system that often seems to care very little.
Continuing Healthcare maladministration
Back in 2014 we conducted an online survey asking for feedback on families’ experiences of NHS Continuing Healthcare. The results showed a range of errors and maladministration in the funding assessment process.
Since then things have not improved. Indeed, since the (then) government introduced the NHS reforms in 2013, families report that things have got harder when trying to access NHS care funding.
Back in 2007, new national guidelines for NHS Continuing Healthcare (the ‘National Framework’) were introduced in an attempt end the postcode lottery in NHS care funding across England. Prior to this, every Primary Care Trust (as they were then) set its own criteria for funding.
The National Framework sets out assessment guidelines and eligibility criteria for all health authorities in England to follow. Today’s Clinical Commissioning Groups also have to follow them, as well as (more importantly) acting within the law, including case law like the Coughlan case.
Needless to say, the National Framework has done nothing to remedy the problem – and some also question the Framework’s legality. It’s also clear that families in some parts of the country experience worse problems than others.
Forums and blogs about NHS Continuing Healthcare, including Care To Be Different’s blog, are full of painful stories that families have shared – accounts of what has happened to them at the hands of some funding assessors.
These families do not know each other, and yet almost all report some kind of maladministration and a failure by assessors to follow procedure and/or to correctly interpret eligibility criteria.
Assessors may, of course, have been thrown in at the deep end with no training and no knowledge of the legal context of their work. Families report that some assessors have even admitted they haven’t actually read the Continuing Healthcare National Framework guidelines.
Families also report being told untruths about the process and about the eligibility criteria; families are excluded when they should be fully involved; documents get altered or go missing after meetings (these are all things families have reported); care needs are played down and marginalised; some families experience verbal threats and intimidation; statements of positive eligibility are later denied; and the list goes on… and on.
Stumbling across Continuing Healthcare
It was by accident that I first heard about NHS Continuing Healthcare. It happens to many families that way.
Over the years I’ve applied for NHS Continuing Healthcare funding on behalf of three of my relatives, two of whom were my parents. They were both in a care home for over four years before they died. I was their power of attorney and, perhaps like you, I didn’t really know how the care system worked when they first needed care.
I believed that they’d have to pay for their care purely because they had savings and a house. That’s what their social worker told me; that’s what I’d read in the press; and that’s even what professional advisers had told me. I had no reason to believe otherwise.
It came as a shock, therefore, to realise that I was acting incorrectly in using their funds to pay for their care.
I discovered this while watching a TV programme about care fees and the Coughlan case. (Pamela Coughlan’s NHS Continuing Healthcare case went to the Court of Appeal in 1999 and she won.) I’d never heard of Continuing Healthcare or the Coughlan case before then.
The programme made me realise that my mother, certainly, had care needs way beyond those in the Coughlan case and that she shouldn’t be paying anything for her care. The NHS should be paying instead.
And so began a horrendous four-year battle to secure NHS Continuing Healthcare funding for both my parents. It was 10 years ago when I began all this, and I knew of no online forums on the subject back then, and I didn’t know anyone else going through it. The major health charities seemed to know next to nothing, and there were few solicitors who specialised in this. It meant I found myself going through it pretty much alone.
I started researching it obsessively, and decided I was unwilling to accept anything less than a positive outcome. Four long years later, and with many tears of frustration, anger and despair in between, I finally succeeded. Both of my parents subsequently received a retrospective refund of care fees plus ongoing funding until they died.
We’re conditioned to believe we always have to pay for care
This NHS Continuing Healthcare scandal (and scandal really isn’t a strong enough word for it) is covered in the press from time to time, which is good to see. Unfortunately it is then often obscured by the bigger debate about care in general.
What makes it worse is that most people don’t realise that most news articles, discussions, radio and TV phone-ins and published information about care fees are about social care.
Most people still believe that if they have savings or a house, they always have to pay for care – and yet this is not necessarily the case at all.
You don’t have to pay for care just because you have savings or a house
Social care is completely different to healthcare/nursing care. It is only social care that is means tested, and yet this distinction is rarely emphasised. A person with predominantly health and nursing care needs may not have to pay a penny for their care, because the NHS may have a legal duty to pay in full.
This hasn’t changed or been affected by any recent reforms, nor with the introduction of the Care Act. Indeed, local authorities have a duty to ensure that people with such needs are NOT channelled into paying for their care. The local authority must alert the NHS about the potential need for NHS Continuing Healthcare funding instead.
Many families are never even told about NHS Continuing Healthcare, just like the elderly gentleman I mentioned earlier, who contacted me about his wife.
In addition, many families are wrongly told that NHS funding doesn’t apply to their relative – even before an assessment has even been carried out.
Maladministration in Continuing Healthcare
As someone who advised families on NHS Continuing Healthcare funding for several years and has seen many families through the process, I know how much the nonsense that goes on in the funding assessment and appeals process can really wear families down. With every new case I read, I begin to think I can no longer be shocked at what goes on in some Continuing Healthcare funding assessments, and then I find I am – again.
In my own mother’s case, my father was made to sign the Continuing Healthcare assessment notes and paperwork for my mother – behind my back – to confirm he understood the process and outcome. However, he had no knowledge of Continuing Healthcare or even that assessments had taken place. Why? Because he had dementia.
This paperwork was then used to render my mother ineligible for any funding. It was nothing less than fraud, in my view.
However, the last thing I want to do in this article is to put you off pursuing Continuing Healthcare. With the energy, resolve and stamina to carry on, it is certainly possible to secure the funding.
I think it’s also important to note that, for families, the whole thing is rarely ever about the money. Instead, it’s about the person they love and the principle of the free healthcare and nursing care that their relative has paid for their whole life – and is entitled to in law.
The crying shame is that they’ve had to fight for it in the first place.
Is Continuing Healthcare worth the battle?
Despite all the hurdles put in people’s way, every week I hear from families who have succeeded and I am delighted for them – that they persevered, that they were able to use the information available to help them, for example on our website, in our Continuing Healthcare book, How To Get The NHS To Pay For Care, and on other blogs and forums. I’m delighted that they were able to hold the NHS to account, and that their relative will now receive the funding they need. It doesn’t mean there may not be further battles ahead, but for now they can take a breather, know that they were right – and that they had right on their side – all along.
I also hear from people who have secured the funding after a relatively straightforward process – and it’s always heartening to hear when the process works as it should.
Others of course may not receive the funding at all, and that can be bitterly disappointing. It could be for many reasons, including obstruction in the assessment process. It could, though, also be because the person in care simply wasn’t eligible at this point – but that doesn’t mean they may not be eligible in the future.
5 tips: How to keep going when the going gets tough
1. Remember: people DO succeed in securing Continuing Healthcare funding
Persistence, stamina and gritty determination count for a lot in this. It shouldn’t be that way, of course, but it often is, and so if you have the energy I would encourage you to keep going if you can.
2. Read everything – and then read more
The more you read, the more likely it is that you will know more than the assessors, and it is then much easier for you to pick up on any mistakes made.
Make sure you’ve read the guidelines. There’s no way round that if you want to be able to argue your case and pick up on potential maladministration in the process.
My own personal experience taught me very quickly that if I was going to win, it was going to be up to me. I had to make the assessments happen; I had to be the one that made sure the people and evidence that should be there was there; it seemed to be up to me to check the right questions were asked in the meetings and that assessors took account of all care needs. I felt at times as though I was almost doing the assessors’ job for them.
It’s vital to be as well-informed as you can be, to go into assessment meetings looking and sounding like you mean business and to stand your ground in Continuing Healthcare assessments.
3. Focus on succeeding
It’s easy to say – and yet I know from my own experience how important it is. One of the hardest things about this whole thing is that you can’t necessarily see an end in sight and you don’t know how long it’s going to take. However, the end of the battle could be just around the corner. If you’ve come this far and you are able to keep going, I would urge you to do so. Go into every assessment and review meeting believing you can do it – and that you can succeed.
4. Remember you’re not alone
Make the most of the internet and social media (for example, our Facebook page). There is more online about Continuing Healthcare now than ever before. No matter how lonely it may feel fighting for the funding, remember that there are many, many other people going through the same thing – right now – who probably feel the same as you do.
Share your experience online, ask questions, offer tips and insights to others, read what others have done. Those people are on your side, and it can help to connect with them online.
5. Look after yourself
The process can sometimes take a heavy toll financially and emotionally – and in terms of your energy and your health. Stay aware of how it’s affecting you.
Whatever stage you’re at:
- get enough sleep if you can, drink lots of water, and eat energising food rather than sugary or processed food; the latter is more likely to drain you
- take one day at a time
- be careful not to let the time you spend on all this take you away from the person you’re fighting for.
NHS Continuing Healthcare can save your relative losing all their personal assets – everything they’ve worked for during their life. At the same time, make sure you’ve taken a view as to whether you believe they will actually be eligible.
Also, keep notes on everything – however pedantic that may seem. And when you know you’re right, don’t take no for an answer and don’t be fobbed off. Read these NHS Continuing Healthcare FAQs – these are some are the most common questions families ask about Continuing Healthcare.
If you’ve been through a Continuing Healthcare battle yourself, what strategies did you use to keep going?