My 3 biggest mistakes with NHS Continuing Healthcare

Published 30/08/2017

Please note: This article was published prior to July 2022, and some information may be outdated.

Avoid making these 3 NHS Continuing Healthcare mistakes

Today’s article is from the founder of Care To Be Different. She shares more about her own fight for NHS funding for her parents, including her 3 biggest mistakes with NHS Continuing Healthcare.

These mistakes are easy ones to make, as many families know only too well. That’s why being well-informed and forearmed prior to any NHS Continuing Healthcare assessment is absolutely vital.

I went through the NHS Continuing Healthcare assessment process pretty much alone. At the time I didn’t know anyone else fighting this battle, and I only heard about Continuing Healthcare from a programme on TV. I was working in a completely different field at the time and, when my parents needed care and I needed information on care fees, every single person I spoke to gave me incorrect information.

My own personal experience with NHS Continuing Healthcare is the reason I started Care To Be Different – to help other families avoid the pitfalls in the process and have a better chance of securing NHS Continuing Healthcare funding.

So here are my 3 biggest mistakes with NHS Continuing Healthcare:

1) Not knowing the care fees ‘system’

I’ve written before about how important it is to be well informed when it comes to care fees and care funding.

Many families reach a crisis point when a relative needs care. With the emotional and practical turmoil that accompanies such a situation, it’s understandable that there’s often little time to read up on the rules about paying care fees.

This was certainly true for me.

I had two parents needing care at the same time, and my first consideration was to get them somewhere safe. Trying to manage everything and also pick my way through the process of getting them into care – not to mention the emotional pain that goes with all this – was exhausting.

Tip: I advise anyone with a relative who may soon need care to read up – in advance – as much as possible about care fees and NHS Continuing Healthcare. I cannot stress this enough. Don’t simply assume you understand the care funding system!

This leads me on to my second mistake…

2) Believing what everyone – literally everyone – told me

Friends, family, care fees professionals, NHS employees, social workers, charities – absolutely everyone I spoke to about paying for care gave me false information.

The cause, in my view, was a combination of professional incompetence, ignorance and years of false conditioning. In my experience – and in the experience of the thousands of families who’ve contacted us over the years – many people working in the care system lack proper training in care funding assessments.

Others seems to have agendas that are questionable at best, illegal at worst.

And others have simply believed the incorrect information they themselves have been given about care fees – and they unwittingly pass that on to other people.

In hindsight, of course, this is all very clear. At the time, though, you don’t know what you don’t know.

Sometimes we don’t actually realise what assumptions we make or what information we’ve swallowed as fact. In addition, it can take courage to challenge something when everyone – literally everyone – is telling you the opposite, especially when those people either hold a position of authority or are professionally qualified in some way to provide advice.

Tip: Always, always, always double check what you’re told. Never assume people know what they’re talking about – no matter what their qualifications. Many people also have their own agenda in all this, and it may not be in your – or your relative’s – best interest.

3) Being too compliant during assessments

As I mention above, it can take courage to challenge what you’re told; this can be particularly difficult in an actual funding assessment meeting, where you may feel new to all this, or you feel outnumbered by assessors and/or by people whose job titles suggest they know best.

I certainly felt like this at the beginning. In addition, I was conscious that if I annoyed people by continually questioning everything, it may work against me. I learned, however, that very often that kicking up a fuss is often exactly what you have to do.

Question everything.

Assume nothing.

Tip: Don’t hesitate to ask assessors (and others) for proof that what they’re telling you is correct. This may involve asking an assessor to show you – in black and white – where exactly the NHS Continuing Healthcare guidelines (and more importantly the law) support what they’re saying.

As the many comments from families on the Care To Be Different blog and on our Facebook page sadly show, many people in ‘authority’ talk absolute nonsense when it comes to who pays for care.

The more you read up on what’s actually right, the more courage you will have to question things. Read the Continuing Healthcare guidelines – then read them again. Read as much as you can on this Care To Be Different website. Ask questions on the blog and on our Facebook page. The more you yourself know, the more likely you are to be better informed than some assessors.

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If you know someone with a relative who will need care soon – or indeed already does – make sure they’re not under the false assumption that they always have to pay for care just because they have some savings or a house.

We can all learn from the experience of other families. If you’ve been through the NHS Continuing Healthcare assessment process, did you make mistakes? Feel free to share them in the comments here.

If you’re new to care fees, get started here.

Sign up for our email information bulletin on the right hand side of this page – and download your free guide: “The 7 Most Costly Mistakes Most Families Unwittingly Make With Care Fees”.

Tagged Categories: CHC funding, NHS Continuing Healthcare

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51 Comments

Judy November 19, 2017 at 9:18 pm

Any update Christopher? We are trying to get an Independent Review for a retrospective case but the Commissioning Support Unit (CSU) have been stalling by not providing NHS England with any paperwork as if we are to go away if they do nothing and complain of no resources to provide the paperwork. They have even complained the case papers are too large and this is for a period of about 15 months. What if the claim was for a 5 year period? think of the paperwork then. In the meantime the CSU has broken the law by sharing the confidential paperwork outside of the Continuing Healthcare process .

Chris-G November 20, 2017 at 3:11 am

Judy, Keep having a go at your contact within NHS England. Perhaps try for the name of the prospective Panel Chair and make matters known to them too. It is my experience that a Panel Chair will accept or decline to act with Independent Review Panel (IRP) once he/she has seen the initial request and your supporting correspondence. If a Commissioning Support Unit (CSU)/CCG is behaving this way then they are breaking the law. There is an obligation to act in compliance with the IRP's requests for the information even if it turns out to be a truck load.... My first IRP generated well over a thousand double sided pages in addition to the original 300 or so that we sent to start the process and the follow up 200 or so once we had seen the copy of the info sent to us by the IRP prior to the hearing. I left out the number of relevant emails and letters and complaints in this regard..... I simply took copies and placed them in front of the chair when we got there. There again, I would imagine that the workload (according to job site offers) on Panel Chairs has gone up enormously in recent years...... It was even a few years ago taking us over two years to get a hearing sometime over three..... Keep at it but keep breathing too.....

Chris-G November 6, 2017 at 3:04 pm

Gary Evans.
Good for you. However, I actually reported a Nurse for falsifying Decision Support Tools (DST) and because she that does not appear on the Nursing & Midwifery Council (NMC) register in the name that she goes under..... Long story short: Data Protection Act incorrectly applied in refusal to act: Details of who they guessed was the person eventually sent without verifying that it was the same person: Copy letter from employers sent to me via NMC stating that they were happy with the(faulty), registration: An insistence that PIN number is the identifier by the NMC when of course (the falsified), documents are signed with a name not a PIN: Refusal to act with an additional refusal to contact Police and a suggestion that I do so in their place. This was eventually to involve the CEO. The name is still missing from the register even after 7 years and she still signs the wrong names. She is guilty of failing to maintain her registration even if I could not prove forgery (And I do hold three substantially different DST's all claiming to be the original and a later DST that was passed for decision with question marks and no recommendation so that her managers (who created their own false copy), could also complete the domain scores). So I have little confidence in the NMC even at the top.
Framework does lay the need for a genuinely MDT out as does the LAW..... The Standing Rules Regulations enforces this.
Framework:-
PG 31 What happens if the coordinator is unable to engage relevant professionals to attend an MDT meeting?
'31.1 CCGs should not make decisions on eligibility in the absence of an MDT recommendation, unless exceptional circumstances require an urgent decision to be made.'

It implies a requirement for the MDT to be properly constituted. Because a recommendation cannot be legal and actionable if the MDT did not actually exist.

'31.2 Apart from ensuring that all the relevant information is collated, it is crucial to have a genuine and meaningful multidisciplinary discussion about the correct recommendation to be made. This should normally involve a face-to-face MDT meeting (including the individual and/or their representative). If a situation arises where a relevant professional is unable or unwilling to attend an MDT meeting every possible effort should be made to ensure their input to the process in another way, such as participating in the MDT meeting as a teleconference call.'

Again..... No actual MDT and the 'CRUCIAL' genuine and meaningful discussion cannot have been had. Ergo a recommendation again cannot be actionable within the Framework and any outcome is likely invalid.

There again. The standing rules regulations require a properly constituted MDT before a DST with it's mandatory recommendation can even be completed. So if a sole NHS Nurse Assessor even completes a DST and makes a recommendation, they have arguably, broken the law. This is likely why our CCG uses a 'review' document like a cross between the Checklist and the DST when looking into reassessing between annual assessments. The three month review (usually written on a DST is also likely unlawful..... I have never attended the first review without it creating a DST and there was only ever the NHS Nurse assessor in evidence.
A DST is required so that a decision can be made..... Again No MDT means no valid DST means no valid decision in regard to the legal status of causing self funding or council funding of the care and accommodation required.

Kirstie Pearson October 30, 2017 at 4:29 pm

My Dad was in a nursing home, he has since been admitted to hospital and has been there for 7 weeks as there are safeguards in place, he isn't returning to that nursing home. The nursing home requested an NHS Continuing Healthcare assessment and a Checklist was done. He was admitted shortly afterwards. He had another Checklist done, and today been told he needs another one because the one done a few weeks ago didn't have enough information and he scored 'too high'. How many checklists should be done?

Caroline October 31, 2017 at 1:11 am

This is nonsense and it sounds as if they are trying to reduce his score so he remains ineligible for a full Decision Support Tool. You need to make sure this is not the case and it would be advisable to take a legal representative or an advocate who knows the law on this to any further Checklist.

Chris-G September 15, 2017 at 2:17 pm

Peter, the NHS does provide free social care..... They do it in hospital. Why? Because the patient's needs require that level of care and doctors could be sued if they did not adequately meet those needs. Once out of their sight.... Continuing Healthcare people take over and have no interest in providing care at all. They even try to lessen actual medical needs with fatuous remarks such as the 'GP and Consultants provide for the medical needs', as if the needs do not have to be met 24/7 (by social work staff?) once the person has had their weekly look over by the doctor.......

Cheryl perry September 15, 2017 at 12:23 pm

Help! My mother has been in a Residential care home since 2013 with vascular dementia. 16 weeks ago she had sepsis/pneumonia/c-diff/uti & by pure luck pulled through this. But has been hospitalised since. Having tried to go back to care home for 6 days this was unsuccesful after sustaining a fall & a recurrent c-diff. The care home manager has been to assess her on numerous occassions & have decided they cannot meet my mother's needs. She now awaits a vacant bed in a Nursing Home. Now my problem starts. Would she be eligiable for NHS Continuing Healthcare?

Angela Sherman September 16, 2017 at 1:37 am

Cheryl - have a look at this: http://caretobedifferent.co.uk/eligible-nhs-continuing-healthcare/

Chris-G September 15, 2017 at 5:44 pm

Cheryl perry. You need to get the council involved in seeking a nursing home. Until you or they find such that suits you, then it is in your interest to try to keep your mum within the hospital, and in any case, the hospital does not seem to have anywhere to send her home to.
The council, the local CCG and the hospital should already all be working together with you as representative, (assuming that your mum cannot make decisions), so that a suitable Nursing Home is found. The matter of CHC funding requires a full Multi Disciplinary Team assessment led by the CCG or their delegates. This assessment MDT is different from anything that you might have heard going go on within the hospital when care was being planned or given. If survival or more needs may soon be apparent, then a 'Fast Track' procedure should be put in place upon discharge until a full CHC assessment is undertaken.
As for being eligible: Simply listing the health problems is not going to help her. You need to look at every aspect of the needs that the illnesses cause..... I often ask people to list the making of a cup of tea for someone that they do not know who is sitting in another part of the house....... this simple task (when examined minutely), can be very complicated and/or intense and/or unpredictable (those along with Nature of the need, are the criterion you need to meet to obtain funding)...... and making tea is a very simple need to meet when someone can talk to you and make decisions. Then if they need telling, I ask them to list all of the natures of the needs and then the matters that might complicate or show intensity or unpredictability in providing the care..... This applies to all care needs and not just what might be viewed as medical.

Chris September 10, 2017 at 8:09 pm

From my own experience into a 6th year, the NHS are programmed and trained to knock back care fee claims, legitimate or not and it my case having received advice from 2 Barristers that prepare a exhaustive Appeal document, in that my claim exceeds the Coughlan case and summarily NHS breached set out Guidelines throughout the submission of my claim. Hence to the next stage of the independent review panel. Beware that just complaining does nothing and be prepared for the long haul and seek professional advice on a no win no fee basis, as without this, claims made by individuals, may go on into perpetuity as threats of the Health Ombudsman, MP et al have no effect. Please note I am not in the Legal profession as a retired individual, claiming on behalf of my late father. If anyone has fully won their claim of retrospective care home fees recently, please let me know.

Andrew September 10, 2017 at 9:44 am

An article has appeared online. It suggests that opinions from medical professionals which might support that individuals have a primary health need (and are therefore eligible for NHS Continuing Healthcare) are being ignored:
http://www.bbc.co.uk/news/uk-england-41187615

The article also refers to a statement made by an unnamed spokesman for NHS England (the entity to which Her Majesty's government and the Secretary of State for Health have delegated day to day managerial and operational responsibility for the provision of health services in England, including NHS Continuing Healthcare. NHS England is responsible for regulating clinical commissioning groups). The spokesman says:

"It's a fact that the majority of people put through a continuing healthcare assessment turn out not to need it."

This is a chilling statement. It smells of bias and prejudgement against those being assessed rather than keeping an open mind, following the national framework produced by the Department of Health, and most importantly the law set out in the leading Court of Appeal judgement in R. v. North and East Devon Health Authority, ex parte Coughlan.

Have NHS England communicated the spokeman's statement to CCG's?

Is this statement indicative of the attitude that can be expected if appeals of NHS Continuing Healthcare are made to an NHS England independent review panel?

Angela Sherman September 11, 2017 at 4:11 am

Thanks so much for you kind words about the website, Debbie.

Angela Sherman September 11, 2017 at 4:10 am

Thanks for your kind words, Yvonne.

Angela Sherman September 11, 2017 at 4:09 am

Good tips, Shena - and, yes, believe no one!

Angela Sherman September 11, 2017 at 4:07 am

I can empathise with your experience, Jenny, particularly regarding ignorant and ill-informed people trying to throw families off track.

Angela Sherman September 11, 2017 at 3:58 am

They are easy mistakes to make, Steven - especially when the whole 'system' conspires against you.

Angela Sherman September 11, 2017 at 3:56 am

What a terrible experience, Jan. It's beyond shocking. Thank you for your kind words about out website and downloads.

Angela Sherman September 11, 2017 at 3:54 am

Andrew - thanks for posting the link. It is indeed a deeply cynical statement from NHS England.

Una September 5, 2017 at 1:03 pm

Chris, are you familiar with Decision Support Tool in detail? Think of it like a Job App and the Person Spec - each criteria must be met, described with examples (dates, frequency etc might be useful). Always describe worst case/days not best days. Dont be afraid to ask questions of assessors if you're unclear. Have evidence to back your claims as if you were in court. Prepare prepare prepare ! Good luck!

Chris Cox September 5, 2017 at 10:49 am

Does anyone have any advice please before I attend an Independent Review Panel for Retrospective Funding?

Chris September 2, 2017 at 4:04 pm

Hi
I have wanted to ask a few questions on the Facebook page, but haven't been able to identify how to ask on there. My questions are:

My mum has been in a nursing home for about 4 months. She originally went in either to give my dad respite, or based on a doctor's recommendation that mum was best placed in a nursing home with professionals rather than at home (we aren't entirely sure which)
My first question is - im not sure if this makes any difference in terms of Continuing Healthcare (CHC) funding?
After months of waiting and chasing, we finally had a meeting with an assessor to do the checklist and start the Decision Support Tool - we are hopeful that mums care will be granted funding.
My second question is: IF we are granted funding, will this start from day 1 when mum went in to the nursing home, or is there some kind of time limit of when the funding is backdated to? (I think it was a few weeks before we heard about CHC funding, BUT we hadn't paid up to that point (nor have we paid anything yet).

Many thanks
Chris

Angela Sherman September 11, 2017 at 3:52 am

Chris: this may help: http://caretobedifferent.co.uk/where-can-a-person-receive-nhs-continuing-healthcare-funding/ CHC funding should be backdated to day 29 after the Checklist was received by the CCG.

Andrew September 2, 2017 at 2:42 pm

Has anyone been in a situation where a loved one had a medical condition (a condition which would have been clearly visible to anyone who saw and observed your loved one for even a few moments) which impacted significantly on one of the care domains, but where your loved one's doctor did not make one single entry of that condition in your loved one's medical records? And where the care home records also didn't mention it either?

And if so, were you able to prove that your loved one had that medical condition?

Una September 1, 2017 at 4:23 pm

Caroline, my mum had Parkinson and I secured Continuing Healthcare (CHC) funding for live-in carers at home. It was 4 years back so things are worse now after more Government cuts. By the end she needed 2 live in carers( one for day and one for night). The local authority and NHS were slow but we were lucky to get a kind and sympathetic assessor – since gone.
• I’d advise you to record everything - am sure you’re doing this but just in case...
• My mum had terrible (CLINICAL ) anxiety - this was originally downplayed (by me too – shame, privacy etc.) but when I really went for it and described everything this implied (even blackouts) it became the main factor in securing her CHC. Describe any mental anguish, pain, night terrors in graphic detail. Psychological needs are also medical needs. Its all health. Get a mental health professional involved in assessment –a good one who is sympathetic.
• Contact your MP and get them involved.
• Get a carers assessment if you’re doing 16+hours a week. The local authority and local carers org were useless on this but it means you are recorded as carer and, if nothing else, it records a need and unpaid work.
• Put in formal complaints and be prepared to fight for it all as most of the institutions will be inefficient and trying to cut costs and wont reply hoping you will go away…Its good when they know they are being watched . Copy in MP and chief execs.
- Make sure if you get home carers (via agency) there is a Care Plan. Sounds obvious but the agency didn't do one and nor did CHC or NHS. My mum ended up in hospital with sepsis, not carers' fault I'd say but lack of general NHS coordination. They blamed carers unfairly.
• Be prepared to be exhausted and stressed and try and build in support and allowances for this wherever possible.

Good luck and well done for caring for your aunt. It is the best thing you can do for someone .

Caroine September 1, 2017 at 9:04 pm

Perfect, thank-you.

Caroine September 1, 2017 at 9:01 pm

Thank-you, it is no surprise to me, then, that there is the imperative to not spend any money. I have worked previously in addiction services in prisons and big bullies (companies) have muscled their way in and then failed to deliver services. When I won tenders and provided services if we didn't do a good job we would either be financially penalised or lose the contract, now it all seems the wrong way around with providers telling commissioners what to do.

Caroine September 1, 2017 at 8:59 pm

Thank-you, Una, this is so helpful. Most of what you are saying here I intuit but so far no-one has confirmed that the anxiety/mental health element is so powerful in gaining the additional support. I have mentioned it before but it has been played down by the assessors so now I know why.

And I have been slow in getting my and my aunt’s MP involved as my aim has been to get the care rather than highlight the shortcomings, but now is the time to get very militant. I have already contacted the local safeguarding team on the basis of the Continuing Helathcare’s neglect of my aunt, but I haven’t yet followed that up and it’s been a couple of weeks with no acknowledgement or response. I will follow all your suggestions. Thank-you.

Peter Westbrook August 31, 2017 at 10:48 am

I have helped a few friends in the past and my personal view is; things are getting harder. A Continuing Care Professional walked out of a meeting when challenged about the Coughlan Judgement. The next meeting was with a person "Higher" up the chain who laboured the point that the NHS does not provide "Social Care", which taken as a single item is true, howerver, taken as part of a Continuing Care Package it is not true. My experience of the case prompted me to question the information and consider asking the Ombudsman to investigate a possible case of misfeasance. I agree with Angela Sherman when saying that she met with incompetence, it seems par for the course. I have built up a considerable armory of facts to fight the next case.

Jan August 31, 2017 at 9:26 am

My mother had been diagnosed with Stage 4 Breast Cancer with spread to the bones and spleen in 2015 as well as high blood pressure, osteoarthritis and hammer toes. When she was admitted to hospital two years later, following a fall, the family were told she needed 24 hour residential care and it would be social care because she was medically fit but had vascular dementia. Following a long and stressful fight Continuing Healthcare funding was granted for twelve weeks then less than two weeks later we were told she had advanced liver cancer and only six weeks to live. I firmly believe the only reason we were awarded funding was because we were armed with the information from your website and downloads, we were always challenging, kept a diary, sent emails to PALS for advisory purposes whenever something was wrong and took a voice recorder into the assessment meeting. The voice recorder had a visible effect on the assessors who up until that time had not been compliant with their own procedures and had constantly lied about my mother's needs. Shame of it was she was coming home because the care homes were totally unsuitable yet we were told they would move her to one anyway. She was due to be on the ambulance at 11 o'clock - the hospital didn't even ring to say she wasn't on the ambulance so instead of being with her we were waiting for her arrival at her home when she died alone. Her brother was told by the ward sister she had someone with her for her last hour but a nurse told me she was found by an HCA pity they didn't ring us!!!!

Chris-G October 4, 2017 at 5:45 pm

I can't say anything to help Jan. I am both appalled and cognizant of the stupidity of the poor performance of some of these people and the brutal processes they employ.
They twice sent my bed/chair bound mum to the waiting area for return to nursing home. Dad was told to await her return and not to visit the hospital on those days. Each time after sitting in a busy lounge all day in need of palliative care (without food or drink cos she could not ask), she was returned to ward without any notification whilst dad waited at the nursing home for her return. Unknown to us, (for over three weeks), she was sent home to die. The consultant did not implement the Fast Track process. The GP was unaware of the required palliative pain relief and antibiotics. So did not implement the Fast Track either. The nursing home failed to note that palliative care was required. This was he case until I demanded to see the discharge notes.
Palliative care and pain relief (paracetamol???????) was undertaken as if it was day one, some four weeks after discharge.... My mum died a week later and at her own and the county council's taxpayers cost because Fast Track was agreed so late on. Needless to say that with regard to paying for the recharged care I told the social services where to go.

Patricia Moate October 3, 2017 at 2:30 pm

Jan, I am so sorry to hear about your mother. The lack of care is shocking. Bearing in mind your mum had advanced cancer, I am wondering where the palliative care team were.

Steven Hearne August 31, 2017 at 8:04 am

I made the same three mistakes mentioned by Angela Sherman.Initially told all money and property is automatically taken down to £23,250, no mention of Assessments.When I found out truth it took months to get assessment done and I was too compliant. Follow up assessment not done and I was seven months trying to get response.Eventually Mum passed on and I am in the long process of appeals.It is essential every body reads what is on this site about the process before it happens.

Christopher Liddle August 30, 2017 at 5:20 pm

Next move is to meet my local MP with all relevant records on file and see if this gets anywhere with the NHS?

Caroline Cole August 30, 2017 at 1:36 pm

My aunt has been receiving Continuing Healthcare (CHC) for 8 months in her own home but was assessed as having needs that, although time-sensitive requiring 2-3 hour interventions, was assessed as only needing them from 7.30am to 9pm. This leaves her without any care from CHC for 10 hours at night, when she is particularly afraid and panics. I or someone whom I pay in my absence have therefore to remain with her throughout the night in order for her not to be left alone. In addition, her Parkinson's along with her severe osteo-arthritis prevents her having the strength to press her panic button should a fire or intrusion threaten her during the night. I have been emailing and telephoning since January to request the statutory 3-month review of her needs and to ask the question: 'how come her needs miraculously disappear for 10 hours at night when they have been assessed as requiring regular support for the other 14 hours of the day?' My emails have been met with silence, and on the two occasions I have managed to get through to the CHC commissioning manager, he has promised to phone me back and not done so. Having googled the ombudsman I discovered that I need to exhaust the complaints procedure before going higher. I have requested a copy of the local complaints policy and a complaints form, but this too has not been forthcoming. Any ideas on my next move?

Brian August 30, 2017 at 11:14 pm

Sorry Caroline C - wring link before - should have been - http://www.communitycare.co.uk/2012/02/21/reablement-success-leads-to-social-work-job-cuts/

Brian August 30, 2017 at 11:09 pm

Hello Caroline C,
I moved my Mum out of her CCG area, when I didn't seem to be making any headway with them - one thing you need to comprehend, which I believe affects the way they operate is that they outsourced the Adult Social Services area to [another company] a few years back (2011 approx). This seems likely to affect their overall objectives I suspect. I believe they maybe one of the only LA's in England to have done this (outsourcing SS)....certainly no answer in understanding this - but an indication that the bottom line is probably more important than it should be to them...which is OK in IT but not Social Services.

Jenny August 30, 2017 at 12:19 pm

Thank you for your generous and honest comments Angela. I completely empathise with points 2 and 3. I assumed the GP would know about Continuing Healthcare (CHC) and act in my relative's interest when I asked for medical assessments to establish the extent of conditions prior to a CHC assessment. It became clear they knew nothing about CHC, and were dis-inclined to find out or assist. Rinse and repeat with many other NHS employees thereafter.
Similarly, after selecting a Care home registered to care for residents with dementia, I assumed staff and management would know about dementia in its various forms, and tailor care accordingly. Not a hope!
The feeling that being seen as the constantly nagging relative is dreadful, but what is the alternative when you need to protect someone who is vulnerable?
The biggest problem I encountered is the "lack of joined up thinking". If your relative is self-funding and has no social worker, the opportunity for various agencies involved in different aspects of care for many conditions don't pool their experience, nor gather a rounded picture of the totality of needs. Indeed, they often seem resistant to do so.
I eventually "won" CHC for my relative after many years of being timid, polite and being fobbed off. I'm ashamed and sometimes angry at myself for letting ignorant and ill-informed people deflect me from obtaining what my relative was clearly entitled to, and from an earlier date. I'm now engaged in a retrospective claim, and am keen to emerge sane on the other side. The stress and enormous effort are unfair side effects of wanting to "do the right thing".

There is no substitute to getting well-informed, keeping excellent diary notes, and battling on.

I'd be interested in hearing of anyone's experience of retrospective claims. I see there is no National format, and wonder how the various CCGs and Commissioning Support Units do this? In what format did you present your claim? Did you get a chance to speak, as in a Decision Support Tool completion, or was it all in writing? How long did it take? What worked well? Anything to avoid?

Steven Hearne August 31, 2017 at 1:24 pm

I had the same experience with my mum in a care home.Told by social services all assets taken down to £23,250 with no mention of assessments and care homes themselves should tell relatives and the new guest patient about assessments. As you say, no cohesion between various agencies on needs and when it comes to retrospective appeals they only rely on care home notes which are usually inadequate.I am appealing the Commissioning Support Unit decision on rejecting the claim and am told it could take a year once it gets past another clerical review.

Shena Lewington August 30, 2017 at 12:02 pm

My personal tip is that number 2 is a key one:
"Friends, family, care fees professionals, NHS employees, social workers, charities – absolutely everyone I spoke to about paying for care gave me false information."

Unfortunately, the application of 'common sense' is the way to wrong information being disseminated. It seems so plausible that those who own houses should have to pay for their care when poorer people don't, but this rationale isn't applied when you're taken to hospital following a car crash, heart attack or severe bunions. That's because the NHS was set up to provide care, free at the point of access.

Protocols set up by managers (who really ought to know better) also lead care workers etc to carry out inappropriate things, like asking for the income of both husband and wife when assessing the financial situation of just one of them. Willful misinterpretation of the guidelines can mean that family are not involved in the assessment because they don't have power of attorney.

So, as Angela says, believe no-one, no matter how friendly and helpful they seem, unless they can back up their assertions by reference to the Framework (not what their own handbook says). It really is worth printing out sections of the Framework document, and carrying them round with you, so that you can ask anyone challenging you to point to the relevant paragraph. This worked for us when a senior manager told us that the Framework only applied to those in hospital and not to anyone already in a care home. ("So why does it say in this paragraph that .... ?" )

Yvonne August 30, 2017 at 10:32 pm

Just to add to Shena’s comment - the advice she and I received through Angela’s book and website was invaluable.
It was a tough fight, but continually referring to primary legislation, and not taking locally provided information as gospel is key.
However, we did have the advantage of one of the officers lying and putting it in writing for us!

Debbie Baker August 30, 2017 at 11:18 am

This is so true I remember my very first Continuing Healthcare assessment I was so bewildered and had no idea except for one thing ...my father was worse so how could he possibly be no longer legible.
That was the turning point for me I went away and read up and sat hours after hours leading the guidelines and studied the case laws.
The assessments that followed were so different and I still was no expert, BUT I challenged everything and that made them nervous.
Asking questions rocked them and even them thinking I had some knowledge was enough to make them realise they couldn't tell me what was right.
So many families lies are wrapped in turmoil and stress that they do accept the advice and IT IS WRONG.
This website has been invaluable with tips and advice and We must all make the stand.
Professionals do think they are always right and they are not, my father only had a three month period where he wasn't funded but since then I keep evidence of everything.
Keep diaries with all details and facts about how you find your relative, In Dad's case they kept reporting him to be fine when he wasn't and by me being able to give evidence dates and times they couldn't ignore that.
Keep fighting it's hard and it shouldn't be that way but it does pay off if you stick to the evidence in front of you.
Lastly thank you so much for the continued advice it's pricelsss and so invaluable.

KateD August 30, 2017 at 11:07 am

Hi, thank you for this article. I too am trying to navigate this process on my own. I feel we were steamrollered through the process, only to be declined for Continuing Healthcare for my 83 year-old mother who was rushed into hospital in February with an infected pressure sore leading to sepsis, plus other complications including a blood glucose reading of 50. How she survived I will never know as it has a 70% mortality rate. The whole family came over, including sister from Australia. My mother has end stage dementia and cannot do anything for herself or communicate with us. I am bewildered by this process and definitely feel we were too compliant during it and the woman expected us to be able to contribute at whim without having had prior knowledge of the process. We were stunned that she didn't get the funding, given all the positive noises made that she would qualify. I need to talk it all with someone to steer a clear path through it. Basically although the articles are good, it's information overload. I need someone to help me apply it. My mother's condition fluctuates on a day to day basis and we have no idea as to her longevity. I am dividing my time between travelling from the south west to the north every couple of weeks, and just finding everything so overwhelming. If you or someone can help I would be so grateful. Thanks.

Angela Sherman August 31, 2017 at 7:23 pm

Kate – I can appreciate that the amount of knowledge you need when going through the NHS Continuing Healthcare process is significant and can seem daunting. However, it’s exactly this kind of information that families need to help them prepare for and get through the process. There’s not really a short cut to gaining that knowledge other than reading the care funding guidelines and reading as much as you can about how to approach assessments and reviews. It does require a lot of reading. Publishing information about NHS Continuing Healthcare is what Care To Be Different does. Even if you hand your case over to someone, it’s still essential that you understand the arguments and counter arguments you need to make during assessments and appeals, because no one knows your mother’s care needs, risks and history like you do. As we mention on our Contact page, we’re not taking on any new cases just now, so use this website to ask questions and get help. Post on our Facebook page too: https://www.facebook.com/CareToBeDifferent/ This may also help you further: http://caretobedifferent.co.uk/choose-continuing-healthcare-advisor/

Mary Osborn August 30, 2017 at 10:44 am

The media don't help either. Whenever they've done a report on care fees I don't think I've ever heard them mention Continuing Healthcare Funding. So if nobody mentions it (& they certainly didn't to me) how are we carers supposed to know?

Christopher Liddle August 30, 2017 at 10:37 am

I fully support and agree with the comments made in your article and from my experience find exactly the same after dealing with my late father's care fee claim, which is now in the 5th year and now in appeal stage.
My solicitor has changed personnel within the 5 years, so continuity has been dis-jointed , which the NHS have monopolised upon with relish, giving rise to a abandoned meeting to discuss the 68 page appeal document submitted to them, saying this has been lost and they need time to assess the re-sent one.
We had one conference call meeting with the NHS and this was terminated as the person the other end was unaware of the appeal and anything else.
Since then the NHS have dodged another meeting and this is still pending , despite considerable pressure brought about to meet.
The NHS have breached their own given guidelines on many occasions since the initial claim, confirming of notifying the Health Ombudsman in this regard, which has not stirred them so far, using the standard ploy excuses of their people on holiday or being under resourced with change or moving departments.
We shall continue to pursue the NHS and not let up , despite the may obstructions and prolonged delays caused by them.