“So will you be self funding?”

Published 01/06/2016

Please note: This article was published prior to July 2022, and some information may be outdated.

NHS Continuing Healthcare: 3 mistakes you might not notice

In this week’s article highlights 3 mistakes in NHS Continuing Healthcare assessments that you may not even notice…

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These 3 mistakes come from my personal experience fighting for NHS Continuing Healthcare funding for my own relatives – but they are often repeated in funding assessments for many other people, too.

1. Subtle verbal intimidation

As I walked along the corridor at the nursing home, one of the assessors took me aside.

We were about to start a NHS Continuing Healthcare appeal meeting for my mother, to reassess her care needs and eligibility for NHS Continuing Healthcare funding.

The assessor was friendly and assured me we would look at all the relevant information. She also commented on how much work I’d done putting together my appeal.

And then came three simple words, each one slow and distinct:

“You won’t win.”

They were almost a whisper, and sympathetic in tone. Each word had a slight pause in between. For a moment I didn’t know what to think.

Was she on my side and willing to help me in what seemed like a monumental but ultimately futile battle?

Or was she trying to put me off, undermine my confidence and encourage me to give up?

It took me a few seconds to understand that it was the latter.

However, she had made a huge mistake: she could attempt to intimidate me all she liked, but to do that at the ultimate expense of my mother triggered in me an anger and a determination to fight this to the very end.

If I hadn’t been on my guard, and if I hadn’t already encountered other tactics to deny my mother Continuing Healthcare funding, I may have mistaken her words for sage advice.

The many blog and Facebook comments we receive from families indicate that verbal intimidation and misinformation about NHS Continuing Healthcare is sadly very common. So question everything you’re told by the health and social care authorities and by NHS Continuing Healthcare assessors, and be wary about assuming anyone is on your side.

2. The wrong care staff in funding assessments

At one of the first Continuing Healthcare multidisciplinary team (MDT) meetings I attended for a relative, there were several people in the room, including a nurse from the care home. I had seen the nurse around once or twice, but not very often.

At that time I was still learning about what happens in Continuing Healthcare assessments and so initially I didn’t question this. I assumed she knew my relative’s care needs and would contribute to the meeting accordingly.

The assessors seemed very keen to address all their questions to this particular nurse, and yet the nurse was really struggling to answer them. Not only that, I could tell that the assessors were placing greater store by the nurse’s answers than by my own – and yet it was becoming very obvious that the nurse barely knew my relative.

I had taken a friend with me to the assessment meeting, for support. My friend asked the nurse directly how much she had been involved in my relative’s care. When the nurse answered, my heart sank; the nurse did mainly night shifts – and only ever saw my relative asleep.

If this hadn’t been challenged, the assessment notes would have concluded that there were hardly any care needs at all!

At Care To Be Different we receive many messages from families who feel their assessment meetings have been sabotaged by having the wrong people present. So question everyone in an assessment meeting. Ask them what their role in the meeting is, how well they know your relative. Ask them what qualifies them to assess your relative’s care needs and make sure the right evidence of care needs is presented.

Don’t be afraid to do this. It’s your relative’s interests that should be at the centre of all this.

3. Casual questions about money

The multidisciplinary team (MDT) meeting was about to start for my aunt.

The NHS Continuing Healthcare nurse assessor and the local authority representative clearly new each other, and (it seemed) had decided that the local authority representative would ask the first question.

Her words were light and casual: “So will your aunt be self-funding?”

There is so much wrong with that question it’s hard to know where to start! And she had asked it right at the start of an NHS Continuing Healthcare funding assessment. I couldn’t really believe what I’d heard.

Needless to say I pointed out to her that a Continuing Healthcare assessment meeting had nothing whatsoever to do with my aunt’s money; it was about her care needs only.

As the meeting progressed it was clear that the local authority representative knew that all too well, yet she had asked the question anyway – presumably in an attempt to trip me up and lure me into divulging details about my aunt’s finances, which were none of her business.

Inappropriate questions about money are asked all the time. There are a huge number of comments on our blog and Facebook page to this effect.

Here are just some of the reasons why it’s not correct for assessors and social workers – or any other NHS or local authority staff to do this:

No one should be means-tested until they’ve been considered for NHS Continuing Healthcare funding.
Means-testing applies to social care ONLY. Healthcare/nursing care and social care are two completely different things. Healthcare/nursing care are not means tested.
The Care Act requires people to be referred for Continuing Healthcare funding if there is even a small chance they may be eligible.
Means-testing is always strictly secondary to Continuing Healthcare assessments. It is only if a person is NOT eligible for NHS Continuing Healthcare funding that they should ever be means tested.

When a person needs care, very often their family is in a state of panic, wanting to find good care and not having time to read about what should and shouldn’t happen. Be alert for any questions about money; don’t answer them – instead, make sure an NHS Continuing Healthcare assessment is carried out first.

Key tips about NHS Continuing Healthcare and means testing…

Don’t assume that what you’re being told by health and social care staff and assessors is correct – or that they’re on your side, no matter how friendly they may seem.
Remember that it’s not unusual to find that people working in health and social care don’t always know the care funding rules or understand the legal framework within which they work. They may have had no appropriate training. For this reason they may sound very sure of their (incorrect) facts.
Don’t assume that questions about money are just part of some pre-assessment Continuing Healthcare process. They’re not!
Do your homework before an assessment, and make sure the correct evidence of care needs is considered.
Read the NHS National Framework for Continuing Healthcare.
Ask everyone in an assessment meeting why they are there, what role they are playing and what qualifies them to be at your relative’s assessment in particular.
Ask everyone in an assessment meeting how well they know your relative and your relative’s care needs.
If your relative has a specific condition, for example, Parkinson’s disease, Lewy Body Dementia, multiple sclerosis, etc., ask the assessors what training they have had in the specific needs of someone with that/those condition(s).
If any assessor says they have met your relative and understand their care needs, ask them how long they have known your relative for, how much time they have spent with them and how long they have spent actually looking into their care needs.
Make sure the people present in an assessment meeting are the right people – including care staff from a care home or care provider.
Refuse to answer any questions about your relative’s money until the NHS Continuing Healthcare assessment process has been carried out – and carried out properly – and a legitimate funding decision has been made by the Clinical Commissioning group (not by the assessors).
If your relative is found not eligible for NHS Continuing Healthcare funding and you decide not to challenge that, you still don’t have to answer any questions about money or provide any financial information; you can simply start paying care fees.
No one can tell you that your relative is not eligible until the Continuing Healthcare assessment process has taken place.
Question everything and everyone – don’t be afraid to.
If you’re not sure whether the information you’re being given is correct, ask the assessor (or whoever’s giving you the information) to show you the page and paragraph reference in the relevant Continuing Healthcare guidelines that supports what they’re saying.

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Avoid the pitfalls of NHS Continuing Healthcare funding assessments

Having a relative needing care is hard enough. Trying to figure out who pays for that care, and then trying to actually get hold of the funding you’re entitled to can make things even harder.

Many families are not told about NHS Continuing Healthcare, and you can find yourself seriously misled by the care authorities about how care fees work. It’s frustrating and distressing. This 183-page easy-to-read guide, How To Get The NHS To Pay For Care, will help you. It’s written by the founder of Care To Be Different. She’s been in your position (several times), stood in your shoes, and she knows exactly what you need to do.

Explore this step-by-step guide: How To Get The NHS To Pay For Care.

Tagged Categories: Care fees, CHC funding, Legal and financial matters, NHS Continuing Healthcare

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51 Comments

nigel duckworth December 4, 2024 at 1:48 pm

I realise it is not now 2017 and 7 years on, but I just wanted to add a small amount to this article. At my father in law's MDT in 2023 there was a discussion about his house. He did not attend the MDT which was conducted by me. Someone, not me, started to talk about his house The senior carer present, when I said that the house was not worth a great deal of money, contradicted me by saying that she was aware of a house in the same street which had sold for much more money than I was suggesting. The ICB area has 286,000 people and so the chances of this happening purely by chance are what? It very much looks as if she had been doing some homework, so that she could say that he did not need, monetarily, CHC. If that were all, then maybe I would not have minded but that same carer said to my father in law on learning about the CHC application that he would not get it and was overheard to say to another member of staff that my wife would stand to be a very rich woman. Since I am professionally qualified but retired, we have not the slightest need for his money whilst I am alive but some will be needed after my death. Maybe that also would not be so bad had the lead assessor not ignored pretty well all the evidence I gave together with both my plea to argue the well managed needs principle and the Primary health Need. Instead all he DST scores and evidence for the 4 characteristics and therefore the Primary health need was based solely on what the carer had said. I did point out before the meeting and in private to the lead assessor that I considered the carer to be biased on the basis of what she had been heard to say previously in my relative's care home but it made no difference. And now I know about the house. No care home notes were produced. At the second hearing, which was solely dealing with behaviour and the medical side of care, another carer gave an entirely different view about my relative's behaviour and, maybe not surprisingly, low scores went up a few notches in the remaining domains.
I raised all these points in my appeal so as to demonstrate that the procedure was badly flawed and that the DST was not a reliable document, but I have lost that as well and the appeals people simply took the DST as read. So onwards to the IRP when I shall have to talk in no uncertain terms about the credibility of the evidence and the person from whom it came (as well of course about why I think that the Primary health need is satisfied)

Su Apps December 30, 2017 at 6:26 am

My father has very advanced Parkinson’s with severe dementia and my mother also has Parkinson’s albeit not yet advanced. My dad was assessed for Continuing Healthcare (CHC) a few years ago and was approved. We recently had a review and increased the care he has in the home to 90 hours per week which equates to £1500 in funding. If it goes over £1500 it has to go back to panel apparently. We are all scared of this as it was such an ordeal to get the funding in the first place and we are worried that if it goes back to panel we may either lose it completely or be forced to go into a nursing home.

However my mother whose own condition is worsening is beside herself looking after my father for the remaining hours per week. She needs to get 24/7 care for my dad. She could top up herself a little but is worried that she has been told she can’t with CHC.

Can you please advise what the risks are of topping up funding ourselves or the potential risk of going back to panel. If financially cheaper can they insist he goes into a home?

Thank you

Andy February 17, 2017 at 4:09 pm

Hello all, my Mum, who has had her leg amputated, needs full time nursing care in a care home, my Mum and I, have finally agreed on one she likes and they have been out and assessed her and agreed they can meet her needs, she is also incontinent, suffers from COPD, very thin and weak and needs hoisting. My Mum's joint care manager / social worker has been pushing us down a financial assessment route which has led to a member of the community finance team at the city council contacting me regarding Mum's savings and pension.
I am informed that there is a huge waiting list for CHC, Mum has passed the initial checklist and is awaiting the Decision Support Tool (DST), now they want to put her in a temporary nursing home until this is done. The joint care manager has suggested to me that I have a meeting with the care home to discuss a contract with them (self funding I believe), I can't seem to get a straight answer from anyone. After reading these articles and more, I am starting to think it's a holding tactic. Apologies for the length of this, I'd much prefer to chat to people regarding stuff like this. I need help with this as my Mum owns her own home, has small savings that will take her over the 23k threshold and thus make her, in the eyes of the council, self funding. Any help/advice would be very much appreciated, cheers all.

Chris-G February 18, 2017 at 1:26 pm

Andy, your mum has assets worth protecting by the sound of it. She also has capacity to make decisions it seems. You are both at the beginning of a spiteful process. Bearing in mind all that, I reckon that a lawyer with specialist knowledge should be involved on the grounds that it might be better to pay a tenner to save a thousand, as it were. Even if genuine assessments found in the NHS's favour, you would lose nothing because your mum is entitled to spend her money to defend her money and as such the council cannot complain that it has been spent so as to avoid them getting their greedy claws on it.

Sandra August 3, 2016 at 10:38 am

Hi all
I just wanted to 'thank you' all for your kind words of support and useful information which I am reading up on at the moment. I am preparing/reading paperwork/information etc for next Tuesday and trying to keep notes as simple as possible!
Thank you all again for your messages and advice

Care To Be Different August 4, 2016 at 2:34 pm

Wishing you well for Tuesday, Sandra.

Steve August 2, 2016 at 4:07 pm

Sandra, sorry to hear of your parents. I too am currently battling on behalf of my dad who has Alzheimer's.

I would suggest that you watch the video about Pam Coughlan on http://www.nhscare.info and download a copy of PAMSDAY, (from their advice for solicitor's page). At your MDT meeting ask the team how they will ensure compliance with the Coughlan judgment as required by law and the NHS National Framework (it's readily available on line). If they try to fob you off you can tell them that you have a signed copy of Pam's health needs that you can refer to as they assess each domain of your mother's needs. Point out that overall your mother's need is primarily a health need that's not just incidental or ancillary to her accommodation (as borne out by the DOLS) and that her needs clearly exceed those of Pam Coughlan. Social services cannot legally charge you for care that is the responsibility of the NHS. If you mum's needs exceed those of Pam Coughlan you are entitled to full NHS funding. But be prepared for an uphill struggle, refusal of the first assessment seems par for the course. Be prepared to appeal.

Good luck.

Chris-G August 2, 2016 at 5:58 pm

Or you could look at care to be different pages at this link ------ http://caretobedifferent.co.uk/stand-your-ground-in-nhs-continuing-healthcare/

Chris-G August 2, 2016 at 5:56 pm

If you are going to try this you will gain greater weight from the ADASS website. See page 22 of the following link. http://www.adass.org.uk/adassmedia/stories/Publications/Guidance/commentary_oct07.pdf.

This gives a pen portrait of Coughlan's needs according to the Adult Social Services Directors.

Margaret August 2, 2016 at 5:36 am

For Sandra

I'm so very sorry to hear of your most distressing situation.

My mum has very recently passed away. I can only describe this as a release for my dear mum but also a release for us too as we endured 8 sorrowful years. It is so cruel. The only people who understand are those families going through all these very difficult times. My thoughts are with you.

Sandra August 1, 2016 at 2:59 pm

Hi all, I have just come across this very useful website and have been reading through all your experiences. I have had very similar experience with my parents.
In March 2011 my mum was diagnosed with Alzheimers Disease. Social Services left my late father to care for my mum even though he had Prostate Cancer and Molecular Degeneration in both eyes. In July of the same year my mum was admitted to a psychiatric hospital due to violent outbursts towards my father. After 31 days my mum sent home, a decision I disagreed with at the time. Some few weeks later, an emergency placement was requested by Social Services for my mum at a private care home. The day after this my father was rushed in to hospital and sadly died 3 weeks later. Since this time, Social Services were charging my mum Top Up Fees which after 2 and half years I successfully got back for my mum. However, 10 days after my mums admittance to the care home a DOLS Assessment was requested by the care home manager. The DOLS recommended my mum must remain in the home for her health and safety reasons and not to be moved. However, Social Services issued a charge (Section 22 - unwilling to pay) against my mums property for care fees even though they had not completed a Deferred Payment Agreement. Section 22 should not have been applied as I was paying my mums fees (which included the incorrect Top Up Fees) every month and there was no unwillingness to pay. Adult Services finally admitted a catalogue of errors concerning my mum spanning 3 years. However, the errors are still continuing! I have a MDT Meeting next week (the first one had to be re-arranged due to Social Worker and Psychiatric Nurse not in attendance)! My father was left to care for my mum when no carer's assessment had been carried out. My father struggled every day as my mum did not recognise him anymore as her husband. The last few months of my fathers life were extremely stressful trying to care for my mum.
The above is a very brief outline of the experiences I have encountered over the last 5 years. The whole situation has been very stressful and upsetting for me and my family. I have continually been given incorrect information, passed from pillar to post, assessments not carried out for my mum, overcharging of care fees, copying and pasting of other peoples medical history on my mum's file and more.
Thank you for reading my post and I will come back and let you know how the MDT Meeting goes next week!!

Rita Nova March 2, 2020 at 10:21 am

To everyone who is fighting for their home their family and their sanity - my heart goes out
I dont have the strength to fight my mothers case anymore - ' we passed through the check list only to be told she needed to stay in the home (on 'respite then) and would have to self fund as she had small amount over the allowed savings so now today I have to stand in my childhood home of over 60 years - and tell him the energy rating of the property the best angle for the photos of my old bedroom and the stairs I walked down with my father on the day I got married - she did not want to sell her home to pay care fees but after 24/7 care how can me and my brother replicate or pay for that - of course she deserves the best care but how awful our 'story 'should end like this this - today we lose our home .

Chris-G August 2, 2016 at 11:42 am

I sympathise, having watched (and tried to assist), my dad and my partner go through similar problems with my mum her dad. I still maintain that for our society to attempt to reduce payment for treatment of illness to an administrative process is appalling. Imagine such if it happened every time a person rocked up at the GP or the hospital.

Alison June 5, 2016 at 7:20 am

Thanks for your comment Julie. We just got a copy of the minutes of our local resolution meeting and they don't appear to have reconsidered anything at all. They just trotted out the same stuff but this time included our comments. They ended by saying that they acknowledged that my mother had health needs; however they did not consider that they were of a level of primary health needs etc etc.

We have decided to agree to the Local Panel Appeal, partly because our Advocate believes that it is this which will be regarded as the final eligibility decision by the CCG and also because she thinks that we have to be seen to be co operating and being as open as possible if we later wish to approach the Ombudsman. Good luck with your appeal.

Julie G June 4, 2016 at 5:07 pm

Alison I noticed your post. We have just been through a Local Review Meeting which unsurprisingly held up the original decision to decline CHC. Just like you I expected the next step to be IRP but our CCG have a second stage LRM. I also think this is a delaying tactic and intended to wear us down. The CCG said that if we should be unsuccessful at the second stage they will decide if we could proceed to IRP. I have asked for for (and still await) details of this second stage LRM so that I can see if it is covered by the Framework. I have also made it clear that I think it is my decision to request an IRP in due course rather than to await their authority to do so. I'm not quite sure what to do next. Good luck.

Angela Sherman June 8, 2016 at 12:20 pm

Julie - the second 'resolution' meeting does sound like a delating tactic. And, as Chris also says, you don't have to have permission from the local CCG to request an Independent Review. You can go contact NHS England directly. http://caretobedifferent.co.uk/what-are-the-different-stages-of-nhs-continuing-care-assessment-and-appeal/

Chris-G June 5, 2016 at 6:53 pm

A CCG cannot decide if you can go to an IRP. That is your right. You contact NHS england. Then an IRP chair will ask the CCG for their records. They should be sent to you too. Then the chair will view it all and decide if they will hear the matter. You would do well to make even the tiniest observation soon after you get the CCG's evidence, to the IRP via your NHS england contacts.

Steve June 3, 2016 at 12:10 pm

This whole issue goes back to the founding principle of the NHS, which is enshrined in the 1948 Act. Health care should be free to all at the point of need regardless of their ability to pay. If the primary need is a health need then the courts have already determined that it is the sole responsibility of the NHS and provision of accommodation is a necessary consequence of that and inseparable from it. Yet the NHS and Social Services continue (illegally) to ignore the rulings and carry on administering the system as they have always done. Would you expect your mother to have to pay for her room and food if she was in hospital? Would you expect her to be thrown out on the streets if she was penniless? Don't feel guilty that she is receiving the support she's entitled to. The fact that the NHS might be under-resourced is a separate issue entirely.

Linda June 2, 2016 at 5:58 pm

My mother was assessed for NHS continuing health care while in hospital and waiting to go to another care home - the previous care home was now unable to meet her needs. The ward manager spoke up, stating her case and the result was that mum was awarded the funding. That was three years ago. She is still alive and in the care home that she went to immediately following the NHS assessment. I disagree with many who are contributing to this debate. All my mother pays for is hairdressing, chiropody, clothes, toiletries and treats. If she was in her own home, she would be paying for her utility bills, food and all day to day expenses. Her financial situation is increasing month by month while the NHS is in crisis. I have even telephoned to say that mum should not be entitled to winter fuel allowance, but I am told that she is. I feel guilty that she is draining the NHS resources. I think that she should be making some sort of contribution.

Chris-G June 4, 2016 at 1:10 am

Linda, please don't spend the money. If at some point, the NHS refuse to continue funding the care, then the council will want to know where it all went. You mentioned various expenses that are covered. If funding is withdrawn, could you get by on £24.00 a week that the council will permit your loved one to spend. If you have justifiable expenditure then spend the money. Don't just give it away or the council could come after you or whoever you gave the money to.

Martin Terry-Evans June 3, 2016 at 10:25 am

Very happy for you and your mother Linda, - I am quite sure that your local healthcare trust would be delighted with any contribution you can obviously afford.

The contributors to this debate are commenting from their own experiences- They have no other ulterior motive than to protect their own and their loved ones welfare.

I am aware that clinical staff are being targetted to work as contractors as CHC assessors on pay rates as high as £350
per day.

Margaret June 1, 2016 at 6:40 pm

Hello Sheila, sounds like you are new to all this; that is getting ALL the knowledge as best as can be.

I was so new to all this, "green". And I'm not talking Eco. I have read and re-read notes on Care To Be Different's site. You become totally consumed with it all, apart from seeing and being with your loved one.

Points I picked up on which was very good advice on this web site:

Do not talk financial assessments with Social.

First things, Health Assessment should take place. Checklist to be done. After Checklist done, relevant Health Authority should be responding within 28 days. It's a joke I am so sorry to say. They have their own Agenda and they think we are stupid. We need to tell them we are NOT.

All the very best Sheila. I know what I have been through and I think of all these people who are dealing with this system. IT'S FLAWED.

I have written of my experiences to Laura Brackwell at the National Audit Office, who is dealing with what may be classed as 'complaints' to do with the NHS CHC.

Margaret June 1, 2016 at 6:21 pm

Alison, just had to reply here as I saw your last line, as above.

Somehow we have to have "light moments" and my mum always reckoned nobody was going to "get her money". I might add here that mum and dad were not wealthy. Having said that the NHS have taken £36,000 out of mum's bank account ( close to 5 years of being in care), still alive but we have been told it's close to end of life. So I sum (no pun intended) it all up as follows.

No inheritance to follow ; so been relieved of shopping. Relieved of that experience.

It will all be such a relief when the end comes for mum; so tragic watching a vibrant and energetic person saying 'good-bye'. Thank goodness none of us know what lies ahead.

I shall be relieved of dealing with a system that is "not joined up" despite all of us being told the NHS has an amazing computer system.
We found all this business so utterly time consuming; just as an aside I have been running headless around the situation. My father passed away end of last October and they were in denial for a few years beforehand so as a human being I have had close to 8 years of chasing for my parents. Sorry but that is 8 years I cannot get back.

I could write so much.

All the very best to you Alison.

Sheila June 1, 2016 at 5:23 pm

Thank you for all these comments, we were turned down for continuing care and now pursuing the local council for funding. They hv come up with what I consider a "starting place"! The social worker tried to warn me off by saying at the beginning by saying of a recent court case was awarded to the council. He did not seem to be listening to us when we were telling him how long mum took tover things. Said he had recommended being reassessed after 2 weeks. Will pursue for sure and to ask what his qualifications are in late stage dementia. Any further tips greatly appreciated.

Angela Sherman June 8, 2016 at 12:17 pm

Sheila - you can appeal the decision about Continuing Healthcare: http://caretobedifferent.co.uk/appealing-a-continuing-care-funding-decision/ Also, these articles may highlight things that have been done incorrectly by the assessors and the local authority: http://caretobedifferent.co.uk/?s=mistakes Be sure to read this one too: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/

Ingo Rossite June 1, 2016 at 4:55 pm

Martin Terry-Evans is on the the right track. I know from experience when I took two advocates to my third DST meeting I stired up a hornets nest at the hospital. Why two advocates? I'll explain below after my idea for tackling CHC Fraud, a tad strong but a critical report by an All Party Parliamentary Group described NHS processes as 'intimidating, humiliating, unfriendly, exhausting, degrading, aggressive, fustrating and adversarial.' I've seen most sitting through three DSTs. No matter what the score, which tries to be evidence-based and objective, it all comes crashing down the Nature / Intensity / Complexity / Unpredictability characteristics are invoked to justify a recommendation that your aged mother doesn't need CHC funding, which she originally received.

It appears to me that there is a sub-text concerning CHC funding and whether it is granted or not. As the NHS is about £2.5 billion pounds overspent (how that can be when this is an organisation that promised to care for us from cradle to grave) it is very probable that pressure is being brought to bare on all those involved in the CHC process to at all costs deny funding. I would like to present two actions that can be taken to alter the process either (1) shame all those that have to or elect to go through the charade of Checklists and DSTs so that they refuse to take part in the CHC process or (2) found a political party on the single issue of forcing politicians of all flavours to do what is right concerning those that require funding. Such a party would probably attract many votes for candidates of the 'NHS Do Right' party (my title, I'm sure someone could come up with something more catchy). If the main parties see that voting for NHS Do Right would cause problems for their candidates especially in marginal constituencies then we might see our politicians falling over themselves to make changes and remove the massive overhead caused by the CHC / CCG process. All the money released would go a long way to doing the right thing for our aging relatives.

So is there anyone out there who would like to found a single-issue political party? This is the chance of a lifetime to rattle a few cages. I'd stand myself but I'm sure there are many who would do a much better job than an old curmudgeon like me.

I promised to say a bit more about why I took two advocates to my third DST meeting: At the first DST I seemed to be invoved but I was rather green. Luckily mum got CHC funding which I felt was appropriate and I thought I could handle further DSTs.

At the second DST I felt I'd been steam-rollered. The nurse-assessor made all the decisions, the two social welfare ladies just nodded agreement when asked, and the nursing home representative said very little (I feel he didn't want to rock the boat on behalf of his employers).

The third DST resulted from my mother having a severe stroke not long after DST No. 2. In fact the ward doctor contacted me and said he thought mum would not survive. Well she did and this is where things got surreal. Discharge was planned for Easter Sunday (what!) but now I wasn't so clueless. Have you done a Checklist? Mum remained in hospital. Some days later I was contacted to say a Checklist had been completed and mum had not passed. May I have a copy of the Checklist and why wasn't I invited to attend? More days passed and they said they had reassessed the Checklist and mum had now passed. Well I asked for copies of all three Checklists which obviously they could not provide - only the revised one which would be available at the DST. When I informed the hospital I would be attending with my 'legal team' things turned frosty and I was advised this would not be allowed. My advice is don't be bamboozled - you can take who you want. The outcome was higher scores than both DSTs 1 and 2 but funding refused under the NICU characteristics (see above).

It's unfortunate that these meeting have to become adversarial and of course your advocates aren't cheap. I have recently been supplied with the hospital records and hoping soon to receive 12 months of notes from mum's nursing home. My advocates will review and write a report from which I will decide to appeal or not. Things should not be like this!

Is it no wonder that like many others I end up distrusting this part of the NHS, however I think the NHS, overall is a very good thing. Those people who founded the NHS came up with a good thing, which provided the best care at the time for many, but which has spawned a cancerous growth, the CHC as presently constituted and the CCGs. Please could someone wield the scalpel and excise the necrosis which has caused so much anguish to so many. Keep up the good work all who are fighting for social justice, fair play and honesty from an organisation we should all be lauding rather than battling.

Sorry for the verbosity but I felt I needed to get a lot off my chest and Martin's post triggered a raw nerve.

Jacqueline June 2, 2016 at 11:49 am

Ingo, agree so much with your comments but particularly about the CCG's and CHC needing to be excised although the NHS in itself is a good thing. Sitting here now waiting for my Mother to pass, the Medical staff here have been totally amazing, I'm just so sad we had to go the start of the CHC post Fast Track reassessment process while my Mother was in care recently. So many mistakes I now realise we're being made - I'm going to make an official complaint once things are less stressful. Does anyone know who the complaint should go to?

Julie Wilson June 1, 2016 at 4:29 pm

Thank you for this. My father has been left tetraplegic following an accident and the social worker has said his care may be part funded by NHS continuing care but this does not appear to be correct as my understanding from reading the simplified guide from gov.uk is that the full amount including nursing and accommodation should be funded if approved by the Commission. We have already been asked about his finances pensions etc. and an assessment has not yet been conducted. Would it be advisable to get a solicitor?

Angela Sherman June 8, 2016 at 12:07 pm

Julie - if your father receives NHS Continuing Healthcare funding, ALL his assessed care needs should be covered by the NHS, including the costs of accommodation if he is in a care home. The Continuing Healthcare process must be carried our before anyone tries to extract financial information from you. It's possible to battle through this without a solicitor - it really depends on your personal situation/preference. If you do decide to use a solicitor or adviser, make sure it's one who specialises in Continuing Healthcare and care funding.

ellaroo June 1, 2016 at 4:26 pm

Still waiting for stage 2 to be completed. At stage one meeting, which i should have attended but was invited when it was finished in hospital, assessor said only 8 % are awarded. Would have loved to have said, wonder who the other 7% are.

Angela Sherman June 8, 2016 at 12:04 pm

Whatever random figure the assessor may have come up with, ellaroo, doesn't mean that funding should not be awarded in your case. Sounds like a tactic to put you off.

Jacqueline June 2, 2016 at 11:39 am

The 8% only awarded is interesting Ellaroo...... Makes sense as I suspect they have a ceiling level much like companies do when awarding bonuses or pay increases - you fit the criteria to be awarded but they are working within a set budget so will not pay out more than that , hence people getting turned down and the pot is empty ............rather than making it all so horrendous for people the budget should be reviewed . I know the country needs to live within its means but of all the money that is spent on Welfare, health etc our elderly people should be a top priority.

Alison June 1, 2016 at 4:06 pm

My mother died at the end of October last year but we are still fighting on. It has been unbelievably frustrating and stressful, and we have been thwarted at every turn, but my father and I are determined not to give up. We had a "local resolution meeting" just over a month ago and are still waiting for their notes and response. They are unlikely to give in and I thought that the next step would be an "Independent Review Panel" but it appears that this particularly CCG has now inserted another step in the procedure ie. yet another local meeting which still involves the people who rejected our claim in the first place. They are hardly going to admit that they were wrong. I will check the National Framework Guidelines but has anybody else come across this additional delaying tactic?

We have been pursuing this since February last year when my mother was transferred from hospital to a nursing home. The whole thing has been a seemingly endless saga of mistakes in procedure and failure to abide by the National Framework. My father and I reckon that we are reasonably intelligent people but it has tested us to the limit and we have employed an independent advocate, without whom we may well have given up. It is an absolute scandal the way that the law is flouted and this issue needs to be urgently addressed. With the ageing population things are only going to get worse. The Who had a point when they sang "I hope I die before I get old".

Angela Sherman June 8, 2016 at 12:03 pm

The second 'resolution' meeting sounds like a delaying tactic, Alison. You can contact NHS England directly and ask for an Independent Review.

Chris June 1, 2016 at 3:47 pm

My experience is exactly the same as outlined in this article and in some of the comments above. My mother suffered a severe stroke yet lived for almost 12 months. It was only the "you won't win" and the initial questions about funding which I had actually answered at the outset before learning about this website and purchasing your book that made me so determined to fight. I lost intially but went on to appeal which I won, never had to pay a penny (through totally refusing point blank to pay and saying I had no access to my mother's money) and my mother had wonderful care in a nursing home for her last 6 months. The NHS discharge team verbally threatened me with phone calls every hour over 2 days to try to make me take her away from the hospital and even said that they would put her in an ambulance and put her on my front door step and leave her there!
The Saturday Daily Telegraph did an article last autumn about this behaviour in the NHS but I am not aware of any follow up. I wish a lawyer would take this up on behalf of all those who have been treated badly in this matter.
As an aside i have mentioned this to several friends who are expeincing similar problems with care for elderly relatives, some are so greatful for the information, a couple however can't be bothered to go to the trouble of the form filling and the potential fighting and have just gone out and paid for a nursing home, then discovered that they can't get hold of the relatives money to pay for it and have been shocked how much it is costing them. Be aware.

molly June 1, 2016 at 2:09 pm

My husband has secondary progressive Multiple Sclerosis, he can't walk or weight bear, only one arm works with any function, he is doubly incontinent, can't cut up food at all or open a wrapped sweet, can't write and also has chronic asthma, emphysema, sleep apnea, poor vision and speech yet is regarded as not sick enough for continuing care! If he was in a nursing home they would pay for the nursing element. I don't understand this but will not give up.
Good luck to all, you are going to need it!

.Janie June 1, 2016 at 2:08 pm

Some good comments here . Looking forward to the tea /coffee meeting then ! We are going the distance because our mum would have wanted us to. Shortly it will be 3 years since her death , she would not have given in.

George Robbie June 1, 2016 at 1:38 pm

The "you won't win" tactic is standard in all walks of challenging anything to do with the government whether it be social services, NHS, housing, the Home Office - you name it. It is perfectly clear that whilst all departments have their "complaints process", they are designed to be self protectionist and so harrowing that people generally can't get to the end point, usually an Ombudsman of some sort or, horror of horrors, a protracted and expensive court case.

I have had the misfortune of taking my local authority's housing department to the Ombudsman - twice. I got my father NHS Continuing Healthcare without any help from his powers of attorney (too scared of the government!) only after writing a pre-action protocol judicial review letter and referring to case law. The Home Office didn't use any discretion in my wife's immigration case, took us to court and we won, as we were clearly going to. And social services put up such a robust defence of themselves, at one point a meeting of 15 of them vs me, my wife and mother that I was just too exhausted to go on. It has not been fun.

It has, however, been illuminating as to the ruminations of government bodies that are clearly not able or willing to accept responsibility for anything. You require a thick skin, a mean temperament, absolute fearlessness, total determination and stamina. Above all, stamina. In general don't believe a thing your told, research the statutes, any case law , guidelines and so on and stay the course. Refuse to be fobbed off. Good luck all.

Margaret June 1, 2016 at 5:07 pm

I agree totally with you Jacqueline. Abhorrent what we are all going through. To me these Social Workers have got their own agenda and make up their own rules.

We should be all getting together to fight this stupid system. We know what People Power can achieve.

Chris-G June 1, 2016 at 5:03 pm

I couldn't agree more. Two year long threats by the unpaid council culminated in me doing just what you wrote. I informed them in a skeleton argument format, of every infraction and every breach of law. I enclosed forged document copies too. Then I warned that I would make a counterclaim in regard to the council accepting care that was beyond their legal remit. And that the entire Continuing Healthcare (CHC) matter would need to be argued in front of a judge, which would also require NHS attendance because the amount claimed as owed was as likely owed by them. I have not heard from them in over a year and the money still remains unpaid. It ended when I wrote that it would be simpler for us to defend than begin our own case against them and the NHS. So please go ahead and do it. I'm still waiting.

E. J. Foxall June 1, 2016 at 12:34 pm

I had very similar experiences. There have now been three assessments and it does not get any easier, because each time different people turn up or in the case of Social Services don't turn up.
The NHS team say they have notified them 14 days before the meeting. Social Services say their records do not show any notification.
The meeting proceeds with only one assessor who then asks you to agree with the assessment and sign her form.
When neither you or the Care Home nurse will sign the one individual takes it upon herself to write the recommendation herself. This was disputed immediately as biased and had not been properly produced.
Appeal documents were produced and submitted followed by a cosy meeting with tea and coffee at which it was made plain my intention to proceed with a full appeal.
The outcome was funding was granted but the award was backdated to the date the assessment meeting should have taken place.
This means the next review will take place in only 8 months .
By the time things are all settled it is nearly time to start preparing for the next one . No wonder people get worn down.
This not how the system is supposed to work, but who will challenge it.
My wife has Frontal Temporal Dementia, doesn't talk, doesn't recognise her family, doesn't walk, is fed and looked after by nurses and carers 247. There is no medication for this mental illness which used to be called Pick's Disease, and little if any research.
Why re-assess a person who will not improve and only get worse as time passes.
What a waste of time a money, never mind the stress on the spouse every year . There is no doubt in my mind that I am being worn down so they hope it will make a mistake and they can save money by withdrawing funding.
They are wrong and I will continue to be a thorn in their side until things change.

Rose June 1, 2016 at 11:34 am

FRAUD it certainly is. Gangs employed by the NHS to rob people of their hard earned money, dignity and pride, and who oversee a care system for the elderly which by any standard is tortuous ... they should be named and shamed and brought to justice..

James Clifford June 1, 2016 at 11:24 am

When my Father needed 24 hr nursing care suffering with Vascular dementia we were told he didnt qualify for full NHS funding, we argued no end that his condition was medical, and so he was entitled to the full funding but to no avail.
After many letters and meetings my sisters finally at their wits end gave up and we sold our fathers house to pay for his care.
I totally disagreed with the outcome from the assessors and we contacted a firm of solicitors familiar to NHS care funding to act upon our behalf. Now after some 5 years with dad passed away, they were pleased to advise we had won our case against the decisions made earlier in Dad's assessment and we have recieved a full refund of all fees paid, some £40k +
The moral of the story is if you can't manage to sucessfully appeal or get the correct outcome your self, then hire an expert.

Susan June 2, 2016 at 10:09 am

I agree - I contacted the Law Society and asked for a solicitor in my area who has proved to be invaluable. She came with me to the first healthcare assessment and was instrumental in helping us get the funded healthcare. We have an assessment in 3 months which is meant to be to see if there are any changes in my husband - how can there be he is not going to get better is he? If I see any problems I will get my solicitor to come. I think having the solicitor at the assessment made a real difference - expensive but I think money well spent. The solicitor informed me that there are so many people paying for care that shouldn't be.

Chris-G June 1, 2016 at 4:47 pm

Too right James. If you can't fight and the assets are sufficient to protect....... Pay a lawyer instead of the council. Lawyers have told me that itnis entirely lawful to don't his and indeed a POA holder should attempt to protect the money. Even if you lost, the money would not be there to pay the council with because you had lawfully paid it out to the lawyers.

Martin Terry-Evans June 1, 2016 at 10:59 am

How long are we all prepared to be victims of this CHC FRAUD?
Any lawyers out there prepared to put together some kind of 'class action'

Jacqueline June 1, 2016 at 12:56 pm

Just to add maybe this can be exposed by a newspaper or investigated by TV to get a wider range audience - you don't realise what's going on until it happens, people need to be warned.

Jacqueline June 1, 2016 at 12:54 pm

'hear hear Martin! Totally agree people need help on the ground. I'm sitting watching my Mother die as we speak and am still livid that only a few days ago while doing the first assessment with an NHS Continued Care nurse ( my Mother had been fast tracked from hospital after a stroke into a home and then She was being reassessed) she asked at the end of the meeting that was supposed to be gathering info. From me about health and social care needs ' does your Mother own her own house' - how dare she do that ! And then when awaiting the next meeting to gather more info on the same subject pre the MDT and Panel tell me that the local authority was joining us to talk about means testing my Mother. When I challenged she said that if the panel say no my Mother would be charged the following day by the home so it was in my best interest - you may have seen my oth post about this - it's all a horrendous situation for people and they know you are vulnerable. It is a scandal!