NHS continuing health care: a Q&A with Sharon Allen

Drawing on both your personal and professional background, how would you describe your experience of CHC?

My mum is 92 and has advanced dementia. We made an application for her to receive CHC in 2023 and it was turned down. I appealed against the decision, but I’ve been told recently that the appeal was also unsuccessful. I will carry on the fight, but it has been an absolute mess from start to finish.

Unfortunately, on both a personal and a professional level, my overall experience with CHC has been very negative. It’s an extremely adversarial system that pitches social workers and nurses and other allied health professionals against one another. It also feels like it excludes families where it can and – when it has to include them – it is again extremely adversarial. It’s also very opaque. It seems to me that the system is designed to say no and that you have to fight extremely hard to get anywhere with it.

Are you aware of it ever saying yes to people?

In a professional capacity, yes. We have a service that's funded through CHC, and that works well overall. For busy professionals working in the community, however, it's a very time-consuming process to complete the CHC paperwork. If the system was more responsive and enabled people to genuinely work together as professionals focused on the interests of the person – rather than this adversarial ‘you must not give it unless you've got absolutely no alternative’ – I wonder how much money we'd actually save because we wouldn’t be tying up professionals on bureaucracy.

I’d love to know how much time and money is spent on all of the meetings and the dispute resolutions – time and money that could actually be going to people and their families.

The personal situation with your mum sounds quite the ordeal. What are your reflections on it?

My mum is now living in a nursing home, but when we applied for CHC two years ago, she was at home. I was organising live-in care for my parents, to keep them at home, which was what my dad wanted, and is what my mum wanted when she was able to express that. I applied for the CHC because of her increasing level of need. She was having horrible hallucinations and anxiety, and before the live-in care she’d had a couple of falls, one of which led to her having four broken ribs.

Because progress on our application was slow, I chased up and found out that the application had actually been lost, specifically because the decision support tool for my mum (which had happened without my knowledge, despite them knowing I was a social worker and have health and welfare lasting power of attorney for her) had been lost. I received no more detail, but the ICB said we had to start the process all over again. We got things underway again and that eventually led to another meeting where a nurse said she agreed that my mum met the threshold for CHC. But once the nurse went back to present the case, she came back needing more information. That went on for another couple of months and last September – so a year after the original application – we got a letter saying my mum had been turned down. By this time, my parents were in residential care because their own funds had run out for live-in care.

I couldn't face going back with an appeal at that point, but we eventually did. We had the appeal meeting last month, and a few weeks later I got the letter saying it had been turned down. I will carry on with the fight, because this is about my mum. I'm not interested in the money and never have been. It's to keep my mum and dad safe and together. They've been married for 70 years – they are totally one. And I will fight for it because I believe it's her right. But I'm not confident about getting it. It's been a gruelling process.

How would you describe the wording in the rejection letter that you got?

It has no sympathy or empathy whatsoever. When people meet you face to face, they're different. They have to be really – they can see what’s going on. I may be crying, my mum may be beside herself, so there’s more empathy then. But then you get the final letter, where there’s none of that. I’m reading it again now and it is just so impersonal. It doesn’t seem to recognise in any way the impact that it will have on the people affected by it.

So how would you summarise the main problems with CHC as you see it?

The main problem is that it has become a totally gatekeeping exercise. ICBs are under pressure financially, and this is a big area of almost uncontrolled expense for them. Teams seem effectively instructed to do everything they can to make sure it’s a ‘no’.

It’s also part of unfortunately the endemic nature of our health service, in that it always thinks it knows best. It knows best about some things, but families know best about their loved ones. Nobody knows my mum better than me and my sister and my dad, but we're not listened to. And I know we are not alone. I speak to many people going through the same thing and it's heartbreaking.

Finally, the bureaucracy of the process is horrendous. And there’s never been an apology that our original submission was lost. Just ‘we've lost it, you'll have to do it again’. But you've got to do everything within a very specific way and within specific timeframes, whereas they can take as long as they want. It’s a very impersonal and inequitable system.

We’ve had the 10 Year Plan, which focuses on big ambitions for shifting care from hospital to community, and we also have the Casey Commission on social care. Where do you think we need to see change?

It’s so blindingly obvious, but we need to start with people and their families and what they need, not who are the people providing it. CHC seems to be the worst-case example of fighting over whether something is a social care need or a health need, and who then pays for it.

If we actually started with the person and said ‘what they need is this’, and then how we support that, we would have a much better chance of doing what the 10 Year Plan wants us to do. But while you've got social care and health as two separate entities, two separate funding streams fighting one another because neither of them has got enough money, who's going to miss out? The people.

So would you have any confidence that those changes for the better will happen?

I do hope so because people shouldn’t have to go through all this, but I'm afraid I've been around this one so many times. Why on earth do we need another review of social care funding when we've got so many reviews in the cupboard to call on – all saying the same thing, which is put more money into it.

If we started with social care and what is needed to keep people safe in the community, and then looked at what you need to do when their health breaks down, we might have a better chance of squaring it. But we always start the other way around. We put everything into health – by which we mean hospitals (and I know what the 10 Year Plan says) and then we go ‘what's left for social care?’ Well it will only ever be the crumbs, won't it?

And that's not enough, because people like my mum and dad are living long lives but are incredibly frail. My dad was adamant he was not to go into care, but there was no alternative. Even if I gave up my job, I couldn't care for my parents on my own at home. And is that what society wants, for people like me to give up work to care for two frail, elderly people who wouldn't want me doing it either?

It has to be paid for and our money has now run out – the only thing we've got left is the house. That is now being sold, and will pay for their care until that money runs out.

Are there any particularly key areas, bodies or organisations who can help with progress?

The specialist geriatricians could be speaking up, and some of them are. The sad thing, I'm sorry to say, is that these people are still too often seen as ‘little old people and what can you do with or for them – what value do they add to society?’ Organisations like Dementia UK, Alzheimer's UK and Age UK are all doing a great job as far as they are able, but this is a voiceless group of people, which is why you've got daughters like me speaking about it. I'm sure there's a big note on my mum's file saying “the daughter is a total pain in the a**e”. Yes I am, and for good reason.

You’re also someone through your professional work who may know the system more than most. Would you agree that if you didn't know how to navigate the system as well, you would have even less chance? 

Completely, I absolutely do. That has broken my heart, thinking about people who don't have my level of knowledge and confidence to take the system on. How on earth are people with no knowledge of the system coping with this? They must be in crisis because it's had me in crisis. I’ve found it to be an extremely difficult and distressing process to go through. I'm a strong and feisty woman but this has brought me to my knees several times. On occasions, it's made me ill.

What do you think needs to happen for improvements to be made on CHC?

We've got to somehow take the adversarial element out of it, where we're pitching professionals and families against one another. We've also got to make it person centred, and in our case make it about what does my mum need, and how we then collectively wrap that care around her in the most efficient way.

I can see why CHC was set up, but it's now become an industry in its own right. People become specialists and they guard it with ‘you're not getting my CHC’. Some might get told ‘you can't do this because it's not within the legal framework’, yet somewhere else someone might be doing exactly that. There's just a lot of rubbish said when it comes to CHC, and the people who are missing out are the people who need it to fund their wellbeing, as well as their families who are tearing their hair out.

Sharon Allen OBE is the Chief Executive of the Arthur Rank Hospice Charity.

Read our new Nuffield Trust report, All or nothing? Access and variation in NHS continuing health care, which has been published today. The research was part-funded by the Nuffield Foundation, but the views expressed are those of the authors and not necessarily the Foundation.