NHS Continuing Health Care Nightmare Continues

I’ve been struggling to sort out my Mum’s NHS Continuing Health Care funding issue since 2012. I’ve been going round in circles trying to contact various organization; legal firms as well as charities for help in dealing with thing, nothing. I can’t find anyone able, willing or interested in helping.

I was in touch with Compass CHC late 2016 up the last DST July 2018. They did their investigations into my Mum’s care situation, which they concluded she should be qualifying for CHC. But then when it came the DST meeting; failed to support us adequately. They were only interested in getting paid monies up front and not provide the necessary support I was assured no matter how many times I tried putting in a Complaint.

All this has a knock on effect on my Mum’s frail health. As now she is under investigation for potential Bladder Cancer. As the Care Agency commissioned by the Local Authority aren’t medically trained to spot how my Mum’s health is deteriorating.

I am disgusted as to how the CCG + Local Authority who have a duty of care for my Mum, are only interested in fleecing her of her savings, and have no respect, consideration, or ‘care’ (that they claim) towards a vulnerable adult in their care. They’ve also insisted my Mum doesn’t want me involved in her care, so they get away with how they treat her.

Exhausted. If it weren’t for my Mum, life ain’t worth it.

Without attempting to pour oil on troubled waters , a link to the Parliamentary & Health Care Ombudsman …
where situations like this one should be reported :


How we can help with complaints about continuing healthcare funding.

This page explains what you can do if you’re not happy with a decision the NHS has made about continuing healthcare funding, including when and how we can help.

May not rectify what has gone on before but … at least it will be record.

I phoned NHS England some time ago about the situation. They said I’d have to go through the local complaints route, only then would they get involved.

I’m so sorry you have this continued fight. It is exhausting!
CHC were saying my husbands needs are managed, ( the buzz word now).
I fought, with the help of social worker, but they had to admit that because hubby is hospitalised so often that his needs are severe and high. Don’t know what to recommend. Im sure you have asked why they don’t feel your mothers needs are severe in some of her illnesses. I’m disappointed that compass didn’t help in the end. I had considered going to them. Your MP the stage of your appeal?
Wish I could be more help,but I am listening and so feel for you. ((( hugs)))

The procedures to " Right " failings in all branches of health and social care are tedious and lengthy … by design , perhaps ,
to ward off many so as to present a false picture.

A few carry on regardless … to be commended … even then , those who are demned " Correct " see little in the way of
retribution … for example , monies expended back dated.

Little comfort to anyone but … that is the System for you.

I did contact my Mum’s MP, where they requested a review. Which would mean another set of Checklist + Assessment, when the one carried out last July 2018 they deemed as ‘stable’. How can someone’s situation be stable, when they’re on a long list of meds and having a large care package?

Beggars belief the lengths they go to in avoiding proper care. I was hoping to get a proper Care Agency that would work with me in looking after my Mum’s care, as she deserves.(As the one in place, is commissioned by the Local Authority, who do a substandard job, which I have no say about…long story) But no, I am prevented in looking after my own Mother.

As the MP requested another review, and that was last July, I would go ahead with it now. Clearly your mothers needs have increased. I know its very exhausting, sadly though, one of two ways. Fight on, with as much evidence that you can get, from Doctors, etc, or accept the findings, which you feel with all your heart are incorrect. You are looking after your mother, the very fact you are around,fighting her corner proves that!

I know and my Mum knows I am involved in my Mum’s care. But unfortunately the Care Agency take predominance in my Mum’s care, and have down played her needs to fall into line with the CCG.

Further info can be found on this link


I have tried lots of avenues on the list, but have drawn a blank on all of them. My Mum is illegally having to pay for care when she shouldn’t have to. The injustice is making me more ill, can’t wait to die is my reality.

Who said this?? or is that your opinion? There has to be a paper trail for any/all decisions. These are vital if you are to take complaints further.

In meantime I would go right to the top and contact -

Matt Hancock
Secretary of State, Department of Health and Social Care
39 Victoria Street

see what sort of response you get


I did write a letter to David Cameron with his was PM, but got fobbed off.

As somebody good sad, the CHC were saying my husbands needs are managed, I fought, with the help of social worker, but they had to admit that because hubby is hospitalised so often that his needs are severe and high. Don’t know what to recommend. Im sure you have asked why they don’t feel your mothers needs are severe in some of her illnesses.

My Mum has thickener in all her drinks; without is at risk of choking - high risk. She has regular UTIs that needs careful management - high risk. Pressure sores also at high risk. Needs hoisting; high risk. Long list of medication needs to be managed carefully; Mum often refuses them due to Dementia/Alzheimers; she also refuses to eat - has lost a lot of weight since last year - very high risk. Those are just some of the complex issues

Hi .
Ive recently had a similarly bad experience with Compass CHC.
I found their fees very misleading and wasted £3660 which I thought included representing us at the assessment but they wanted another £2100 plus expenses for doing that.
They said initially that we had a good case for getting NHS continuing health care for my husband but after doing their investigations and getting paid they didn’t think we had a very strong case after all.
I would warn other people to avoid this company and save your money

All the research I have done over the years, has revealed;

“The real test is whether the care a person needs is focused on addressing or preventing ‘health needs’, as opposed to meeting social care needs”.

Unfortunately social services rely colluding with the CHC team, than actually doing things by the book.

It’s such a shame the Campaign for CHC Judicial Review has come to nothing. All that money raised when up and down the country families are being hard done by coz the system allows.

“The real test is whether the care a person needs is focused on addressing or preventing ‘health needs’, as opposed to meeting social care needs”.

I think this is a really misleading statement from them. For a start, someone needing meals on wheels would be defined as a social care care but if they didn’t get that food surely it would be a health need? When is a health need a health need? If someone needs medication to stay alive, that’s clearly a health need but that alone wouldn’t be enough for CHC. Lots of people in care situations have major health needs but at what point does that become enough for CHC? We can’t access enough care for my Dad because he needs so many visits to administer his medication. He’s deaf, blind and has peripheral neuropathy so there is absolutely no way he can give himself medication, which has to be time specific because of his Parkinsons. This single issue means he will have to go into care because we can’t get enough support a couple of days a week to help us manage. To me this is a clear case of health needs but he’s far and away better off than a lot of people who are still nowhere near accessing CHC. It makes me so mad that people are being forced to fight so hard when caring is bloody hard enough as it is.

“An individual has a primary health need if, having taken account of all their needs (following completion of the Decision Support Tool), it can be said that the main aspects or majority part of the care they require is focused on addressing and/or preventing health needs. Having a primary health need is not about the reason why an individual requires care or support, nor is it based on their diagnosis; it is about the level and type of their overall actual day-to-day care needs taken in their totality”

Hence, the real test is whether the care a person needs is focused on addressing or preventing “health needs” as opposed to meeting social care needs.

The problem is that there is a fundamental problem with the system. Henry’s Cat picked up on it straight away: the distinction being made between health and social care is utterly false. Any social care action - preparing a meal, dressing someone, going to a social activity, anything - can have a direct impact on physical and/or mental health. If anyone doubts that, tell me about the impact of being in lockdown for months had on your mental health because you couldn’t get out and meet with family, friends, etc.?

It doesn’t help that effectively the same government department is responsible for both health and social care. And operates both by different funding streams and mechanisms, instead of an integrated department doing all of it as an integrated service, free at the point of delivery because it all comes under the NHS. The current system is utterly bizarre and doomed to fail a large proportion of people using it.

And the joke? When Jeremy Hunt refused to move from the Department of Health he insisted on his job being expanded to include social care, and the Department was renamed. And that was all that changed because it was already his job. Whether he knew or not, I don’t know. But the media certainly didn’t. Either way, nothing actually changed except the letterheads. A classic opportunity, missed.

There should be a way to redress all the chaos officials cause no matter how long it’s been going on, where is the humanity otherwise? If this happened in the private sector, they wouldn’t have loop-holes suiting themselves. Whatever happened to the Nolan Principles aka 7 Principles of Public Life?