Article from Care to be differnt written yesterday on CHC

Angela Sherman director of Care To Be Different, asks whether NHS Continuing Healthcare is it still worth the fight

In May last year I wrote an article about the difficulties families continually face securing NHS Continuing Healthcare funding.

I also highlighted the palpable anger and despair families feel at the hands of a care system that often seems to care very little. In that article are also some tips and strategies to help you with NHS Continuing Healthcare.

It will come as no surprise to many people that the situation hasn’t got any better. Many would argue that it’s now even worse.

That said, however, we still hear every week from families who have succeeded in getting NHS Continuing Healthcare funding. Almost universally, the feedback these families give is this:

It’s vital to be well-informed in advance of any Continuing Healthcare funding assessment.

It’s vital to be one step ahead of Continuing Healthcare assessors in terms of knowing how assessments should be conducted, and knowing what’s right and what’s not.

It is the oldest generation who have paid into the NHS system for the longest. They did that with the promise that the NHS would support them with healthcare and nursing care should they need it. That was the deal.

And so when politicians and others say that ‘we just can’t afford it now’ this surely misses the point. Older people who need healthcare and nursing care now have already paid for it. What’s more, it is NHS care that is clearly prescribed in law.

Sadly families often find themselves fighting tooth and nail to secure this state healthcare and nursing care.

And so the question is…

NHS Continuing Healthcare – is it still worth the fight?

As I mentioned in my previous article, the NHS Continuing Healthcare situation got noticeably worse after the NHS ‘reforms’ of 2013. In addition, the abject failure by successive UK governments to properly address the care funding system in England has led to a system that now seems to be on its knees. It is the most vulnerable people (and yes – those are the people who have paid in the longest) who are now being asked to pay all over again when assessors deny Continuing Healthcare funding.

It’s difficult to predict the future, but given the massive costs this current government has now committed itself to in relation to Brexit, the picture is hardly rosy for healthcare funding in general across the NHS – not to mention social care.

So what’s the point of my article?

It’s three-fold:

1) I want to reinforce strongly that people are still securing NHS Continuing Healthcare funding – every week. The funding is still there. Nothing has changed in the way it’s assessed. The law has not changed either – and the Coughlan case still stands.

2) The best chance you have of also securing the funding is to know the Continuing Healthcare guidelines and eligibity criteria inside out. Make sure you also understand the strategies you need to adopt at assessments and appeals. The information on this website will help you.

3) Be vocal about NHS Continuing Healthcare and the ongoing attempts by the NHS to deny people what they are legally entitled to. Keep going with your calls and emails and letters and complaints to your Clinical Commissioning Group (CCG) and to other relevant bodies. Make your case public through the press if you feel comfortable doing that. Read some of the tactics you could adopt if you’re at your wit’s end.

As well as those tips, consider these as well:

In any Continuing Healthcare assessment, make sure YOU run the meeting. Don’t be railroaded into agreeing with whatever the assessors say. If they are rushing through things, make it clear you expect every relevant point to be properly dealt with. Tell them you will be taking further action against them for any breach of the Continuing Healthcare guidelines and/or the law and/or any breach in their own codes of conduct (see next point).

Report assessors for any breaches of their own codes of conduct. See this link for the Nursing & Midwifery Council code of conduct. See this link for the Health and Care Professions Council’s (HCPC) standards of proficiency for social workers in England.

Challenge everything that care funding assessors tell you that you know to be wrong. Ask them to back up what they’re saying by showing you the page and paragraph reference to support what they’re saying. If they can’t do that, what they’re saying may not be true. Use the ‘search and find’ function on your computer to find your own way around the various Continuing Healthcare documents.

Make sure your MP knows what is going on. Some still don’t seem to understand how care fees are supposed to work! Some are proactive, others sadly are not, but it still may be worth approaching them.

Sign every relevant petition you can – for example on the website or on other petitioning sites, such as 38 Degrees. Alternatively, start your own.

Write to the press if you feel comfortable doing that. Make your feelings known and let people know what’s going on.

Write to the Head of Adult Care at your local authority (LA) and ask whether he/she realises how much the NHS is illegally passing the financial cost of care to the LA. LAs are cash-strapped – and so clawing back funds from the NHS seems an obvious way for them to preserve at least some of their budget.

If your social worker does not seem to understand NHS Continuing Healthcare, educate them about how Continuing Healthcare is supposed to work. Many social workers don’t seem to know that care funding can be entirely an NHS responsibility. As a result many seem to simply agree with NHS assessors when they’re told ‘it’s a social care matter’. And yet social workers have a duty under the Care Act to refer people for Continuing Healthcare assessments.

Do your homework before any and every assessment or appeal meeting.

Be persistent – always.

It’s not easy, I know. Indeed, it can be exhausting. Four long years fighting for my own parents taught me that. Determination and a refusal to be bullied by those in the NHS Continuing Healthcare system is vital.

But most of all, hold on the knowledge that – despite the difficulties – people are still securing NHS Continuing Healthcare funding, and some families are even successful within just a few weeks of starting the process.

12 Replies

  • Hear hear, well said!

  • She's one clever lady Pat! How are you darling? ❤ x

  • I totally agree with everything said. Be prepared, do your homework and be confident at all meetings, even if you don't feel it. All the information given to the professionals assessing for CHC is available on the internet. Read it, or get someone who can help you to read it and explain if there is a problem so you know in advance what they are looking for.

    Keep at it, it is worth it.


  • Agree Bev! It's definitely worth having some knowledge to fight with! Anyway darling how are you? What have you been up to? 💋 X

  • Hi Satt2015. I'm doing OK. I don't like to say too much of what I'm up to as I'm very conscious of what you and the lovely folk on this site are going through. I'll just say I am having the gap year I never had when I was younger. No drugs, sex or rock n roll but I'm loving it and am not home a lot. I've even surprised myself by agreeing to go back packing in Australia and Thailand at Christmas with my son, his wife and their 2 sons. Definite gap year stuff. Lots going on before then though.

    I do think of you all often and check in to see how you are all doing but the bad years are fading and the good memories of when my darling enjoyed life with me are coming back.

    Take care.

    Lots of love

    Bev XxxX

  • Wow wow wow Bev!! Get you!! I'm so so pleased for you!! I think everyone would absolutely love to hear about how your life is going.....not all posts need to be grim and depressing! You've been such a legend to us all, share away! X 😍

    By the way Bev, I'm so pleased the good memories are coming back! I look forward to that day!

  • So.good to hear there is life after PSP after all your battles and exhaustion so pleased you are having happier times and happier memories


  • Yes yes agree with it, they make it so hard that people give up xxxx love tonyou all xxxx

  • As heady says they really are bar stewards!!

    How are you and George, Yvonne? X

  • Amanda life is s**t at the moment, really feeling down, George pulled out his catheter tonight DN came they were very good.

    Just sitting here thinking about my life, I have always tried to be a good person, helping people out when I did not really have time to. Feeling sad because my own sister is ignoring my text message, can't think of anything I have done to her, it makes me really angry, shouldn't family mean family? So sad that my sister is being like that, I love her with all my heart. Oh well I bet I won't sleep tonight thinking about all this. Apart from that we are ok xxxxx

  • Aww Yvonne big fat hugs! Life has a strange way (where Psp is involved) of really trying our patience in every single bloody way!!

    Here I am at 3.15am wide awake, great, not!! I need to be up early!!

    Here's hoping tomorrow is a better day for you both!! 🙏 X

  • So helpful really appreciate your expertise and encouragement.

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