Mark Chipperfield's parents, Jean and Ben

Applying for NHS Continuing Healthcare – Caution, requires extreme strength of character

Mark's story highlights how it is people with dementia who fall between the cracks between health and care, and that NHS Continuing Healthcare - an option for so few people with dementia, for such a limited time – is another example of our broken system.

Mark Chipperfield, Alzheimer’s Society supporter, tells the story of his mum Jean and his family’s nine year battle with the support system that they thought would help them.

My mother Jean, a former nursing sister, was diagnosed with Alzheimer’s in 2008. Six months later her world disintegrated with the death of her husband of 40 years, Ben. My family’s world also started on a long and difficult path to support her to stay in her own home.

Mum’s dementia rapidly developed after Dad passed away. I had promised my father I would try to help mum stay in her own home, but I could see she needed help with, what to me was a severe health issue. So I recruited part-time carers, but then I discovered NHS Continuing Healthcare (NHSCHC).

I initially asked for my mother to be assessed. The then Primary Care Trust (PCT) assessed my mother, but I was informed that should she be awarded funding, I would lose control of arranging the care myself and the NHS would take over any plans for my mother. So she was unlikely to be able to stay in her own home.

A difficult journey

That set the tone for what has been a long, arduous, unprofessionally managed, overly bureaucratic, inhumane journey and terrible relationship with the PCT and subsequent Clinical Commissioning Group (CCG).

It has been a ‘fight’. Not what we should expect from an NHS department, which seemed only concerned about not awarding funding, and had little interest in the health and well-being of someone suffering from a degenerative, awful, unpredictable illness, that is experienced differently by all its victims, but massively impacts all of them.

My mother was turned down three times during the assessments for NHS Continuing Healthcare.

By my third attempt in 2011, I also had an on-going complaint running against the handling of the process. I presented my case, there was a bit of ‘feedback’ from the experts, and later I was sent a report showing that the local NHSCHC team had acted properly. I was amazed. It seemed like a conspiracy, a closed shop, the NHS marking the NHS and finding the NHS not guilty. I was devastated, crestfallen, but also incensed, and determined to overturn this somehow.

At the end of 2012, we were advised we were eligible for funding. The CCG provided funding, but very little other support at all. Fortunately the health agencies, GPs and nurses were wonderful, supporting what we were trying to do.

Funding removed

In 2016, the CCG ran another eligibility test and despite mum’s obvious extensive health deterioration, funding was withdrawn. We had a magnificent team and set up that helped provide my mother with some kind of positive life despite everything – and the CCG had removed themselves from any responsibility. It was shocking. I couldn’t really believe it.

My mother’s health deteriorated further and she was hospitalised with pneumonia. The doctor said she was not strong enough to recover. I made the decision to transfer her home where she passed away on New Year’s Day, surrounded by love and some of her care team.

Our dementia advisers are here for you.

I will see this case through but I have been appalled by the way an NHS department have failed both my mother and the taxpayer. My mother died unfunded and uncared for by the CCG, with us fearing about the future when her own funds ran out.

Mum had been in the palliative cohort with her GP, since 2015. Her conditions were clearly impacting her far more than in 2012 when funding was awarded and to my mind it was totally unacceptable to remove the security of funding later on. Not everyone will be eligible, but once provided, the process of removal should arguably be even more thorough. This was not the case for our family.

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108 comments

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Having recently been diagnosed with Alzheimer’s at the age of 75 , I am trying to locate all sources of information about the decease . Having read many of the tragic stories on care funding I am somewhat depressed to say the least . I am trying to look to the future positively but with very little personal funds available the letters caste a very black future indeed and should perhaps be positioned in a more secure section of the web site .

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Hello Chris,

We're really sorry to hear this - it sounds like you are having a difficult time.

We really recommend that you call our Dementia Connect support line on 0333 150 3456 to speak with one of our trained dementia advisers. They can listen to you, and provide further information, advice and support specific to your situation. More information on opening times can be found here: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line

If you want to read more about Alzheimer's disease, you might find our factsheet useful. You can read it online, download it as a PDF, or order a copy by post: https://www.alzheimers.org.uk/about-dementia/types-dementia/alzheimers-…

We also have a booklet 'When does the NHS pay for care?' that contains further information on what NHS continuing healthcare is, who can get it, how assessments are carried out, and what to do if it is not awarded. You can also read this online or order a copy: https://www.alzheimers.org.uk/get-support/publications-and-factsheets/b…

We hope this helps, Chris. Please do call our Dementia Connect support line.

Alzheimer's Society blog team

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My mum has just gone in a care home she’s got dementia currently I have to pay what pension money she gets towards her care I don’t no how to go about applying for chc funding

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Search for CHC funding on this site, Age UK and especially BEACON who have on their site a blank assessment form etc.

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I will tell you all that we will only achieve a fair system,by standing up and doing something about this that gets their attention,in a word action.
I lost my husband in 2013 he was my full time carer,l am at present in palliative care,l have 31 long term illnesses,while l have bipolar,l am fortunately not afflicted by Alzheimer's,so l have the tenacity to fight to the end because l believe these people dont seem bothered by what they are doing to sick helpless vulnerable people,but what will bother
Them you might ask?
I will tell you l also have had NHS continuing health care refused as social care needs,as l only recieve pension credit and disability benifits,l have quickly found out the LA's are constantly raising their charging policy's to the point that l now find myself in poverty to make up for the funding cuts from central government,as all my disability premiums are taken now in the charging system.l then decided l,was in a no win situation untill commonsense, kicked in l stopped paying my social care charges ,l am aware that social services can not legally stop providing care for you,their only option is to take you to court which l want them to do,once in court( if ever they find the guts to take me) l will inform the court that l am illegally paying for my care as l am above the mearly incidental and ancillary line set out in the Coughlan court judgement am they are asking me to pay for my health needs, not social care needs,a copy of the Coughlan court case with be given by me to the court.
And as it will be a decision by the court l have no doubt that the court will uphold the principles of the Coughlan court case.
If we all did this hardly anybody would be paying,for care,and newspapers will soon pick up on this.
The LA's would have to stop their illegal activities with the NHS( by illegal activities l mean excepting patients from the NHS knowing that they should not be funding patients over the law of the land,of mearly incidental and ancillary) fighting the NHS over the years has not put a stop to the illegal activities of the NHS.
But action taken like this,with all the massive publicity this will cause,will put a stop to this and hopefully instigate parliamentary debate with positive change to follow.
Kind regards valerie

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Dear Valerie, I wish you every success and am keen to find out how you’re getting on. E we need to involve Matt Alwright.

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Hi, I am looking for some advice please... My mum has been in a care home (self funded) for 5 months with vascular dementia... She has in the last week become very poorly and is unresponsive in bed all the time, she hasn't eaten for over a week and is now receiving oral care as she is also unable to drink fluids. She does not wake up at all and I think sadly we're just waiting for the worst. My dad has heard of CHC and wonders if now at this stage, my mum will be eligible for it and also if its likely any assessment can happen with the risk of COVID-19, as there are confirmed cases in her home. Any advice will be much appreciated, thankyou

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Hello CJ,
Thank you for getting in touch. We're so sorry to hear about your mum becoming so poorly. It must be such a difficult time for you and your family right now.
We would really recommend speaking with one of our dementia advisers. They are available to listen, provide support and advice, as well as information on CHC funding.
Please call our Dementia Connect support line on 0333 150 3456. (More information on opening times: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line)
Wishing you all the best, CJ.
-
Alzheimer's Society blog team

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At the end of October, 2019, I had cause to research the difference between social & health care and primary health needs.

The Health and Social Care Act 2008, as amended by the Care Act 2014,
Changes to legislation:
There are currently no known outstanding effects for the Health and Social Care Act 2008, Section 9.
9“Health or social care”
(1)This section has effect for the interpretation of this Part.
(2)“Health care” includes all forms of health care provided for individuals, whether relating to physical or mental health, and also includes procedures that are similar to forms of medical or surgical care but are not provided in connection with a medical condition.
(3)“Social care” includes all forms of personal care and other practical assistance provided for individuals who by reason of age, illness, disability, pregnancy, childbirth, dependence on alcohol or drugs, or any other similar circumstances, are in need of such care or other assistance.
(4)“Health or social care” means health care or social care.

"Not provided in connection with a medical condition...". This would seem to contradict CHC Decision Support Tools which are based on guidance of the National Framework only. I repeat, GUIDANCE! Not law.

In exasperation I am reaching out to all!

At 87 years of age a person was Fast Tracked into a nursing home – the person may be considered ‘institutionalised’ nearly a year later not remembering her home or very little else.

The medical history would include mixed dementia (now advanced), Chronic Kidney Disease, Ischaemic Heart disease (stroke), osteoarthritis and bilateral total hip replacement. Cognitive impairment with no reliable ability of recognising risk to herself or others.

The Stroke may have caused the early onset of dementia with its associated cognitive, nutritional and mobility and other issues.

Nutrition issues have affects wound/skin integrity. Registered Nurse monitors adequate diet to maintain skin integrity. The skin’s turgor is weakening due to protein deficiencies. The person is monitored on a good day or fed the majority of the time, sometimes taking half hour. There has been weight loss and a referral to a dietician has led to Registered Nurse reviewing care plans and updating to ensure plans are met. Registered Nurse oversees weekly weighing to ensure carers are meeting the needs, other skin breakdown is a distinct possibility.

Being bed-bound or placed in an armchair, the person has bed sores that has led to scabs forming over the sores, therefore partial thickness skin loss. The person has barrier creams applied twice a day, is nursed on an airflow mattress where the pump is monitored by RN twice a day to ensure the correct settings and that the pump is working, any skin care the RN is required to dress. Being bed-bound with double incontinence there is a risk of moisture lesions. 3 or 4 pads are used a day, but Registered nurse assesses type and quantity of pads required on a weekly basis. Registered nurse also is responsible for keeping an eye on the signs of constipation/actioning response with doctor as the person is unable to reliably vocalise pain as in “my belly is hurting”.

Due to being bed-bound the person is at increased risk of Thrombosis (evidenced by a Thrombosis clot) and is prescribed ‘ Clopedigrel’ due to the risk of heart attack. The medication is monitored by a Registered Nurse where 24 hour nursing care is available.

The mobility issue affects skin integrity. The person is at high risk of tears and infection (as been evidenced by a tear and an infected wound that required antibiotics and additional nursing care).

Due to being unable to weight bear, 2 carers and a hoist are required to make transfers. Due to either not liking and/or pain the person sometimes pushes carers away when placing her into hoist. Person does not have sufficient strength to reposition herself in bed or in armchair.

The CKD precursor to incontinence and repetitive urinary infections.

Medication includes Butrans patches applied by Registered Nurse once a week with monitoring during daily medication rounds by Registered Nurse. Septaline (a mood drug) is also prescribed due to episodes of anxiety/stress, constant crying and much difficulty reassuring – the person had cried themselves out.

Has had right hand swelling with no apparent reason.

Would professionals consider the interrelationship between the above health and social care or primary health needs?

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This absolutely illustrates a primary healthcare need. Sounds exactly like my husband's grandmother who died aged 104 in 2011 and denied chc ......

We are attending a IRP this Wednesday and expect to be ignored again, but we will keep going.

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We have our 1st assessment next week for our mum with vascular dementia stage 5. She has carers 3 times a day to administer her meds and sees she has a meal as she isn’t capable. Any advice on the process?

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Hi Jayne, we'd be happy to offer you advice on this. If you call our Support Line one of our advisers will be able to help.

Our Support Line is open Monday to Wednesday (9am-8pm), Thursday to Friday (9am–5pm) and Saturday to Sunday (10am-4pm), and can be reached on 0300 222 11 22.

Thank you

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I’ve just started the CHC process for my 93yr old father. Already it’s proving frustrating as having had a first assessment the original scored high enough to trigger DST but when I tried to get a copy of the document I signed when I eventually got it, it was NOT the one I signed?!! In other words any documents submitted by the medical staff along this journey will be submitted in such a way to guarantee you fail?!! The original document apparently was destroyed to make way for an updated version, one I never saw. I was told I can appeal but how can you appeal if original documents have gone. Any meetings seem to be either when you are visiting and helping a family member or when you are about to leave - we know why, so that it’s rushed and you don’t get chance to ask questions or get copies immediately?!! I will fight for CHC on behalf of my father even if it kills me in the process with stress (I myself have had cancer twice),

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If they have lost the paperwork it Is not your fault.If you go to a Judge Review he will want to see the best evidence the first form not s copy and signed by you.

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My aunt has a dols on her her dols papers state she is incontinate has no mental capacity a broken hip so mobility problems needs help washing and toileting needs help prompting to eat has had 3 falls in the last week yet the care home refuse to let me have an assesment for nhs continuing healthcare keep telling me she dont have nursing needs im sure she must be entiltled to some help !!?? Any adice id appreciate thankyou

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Hi Liz, I'm very sorry to hear about your aunt. If you call our Support Line one of our advisers would be glad to offer you advice.

Our Support Line is open Monday to Wednesday (9am-8pm), Thursday to Friday (9am–5pm) and Saturday to Sunday (10am-4pm), and can be reached on 0300 222 11 22.

Thank you

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My late father lived with dementia in his own home with self funded carers and my assistance evenings and weekends for four years. Sadly in 2016 he fell and after hospitalisation was advised he could no longer return home. Hospital suggested he need nursing care not residential and should qualify for CHC. It was felt better for him to find a home and then start assessment process, which we did. Assessment took 6 months to happen and declined even though he needed registered nurse involvement, did not feed himself, was prone to falling (but not considered to fall enough/risk was managed). He fell and broke hip 2 weeks after assessment. Major deterioration after that, bed bound, admitted to hospital several times for various reasons over next 3 months, put on end of life plan, advised CHC now likely. Wanted re-assessment, advised fast track not possible as death not imminent. Assessment date set three months after first one but he died one week before appointment. Retrospective appeal took 2 years. Declined. Had to remind CCG to pay FNC funding he was entitled to, took them 4 months to pay up following constant chasing by us. Whole process is upsetting and frustrating. I pity those with no family to fight their corner. I am now involved in my local CCG's CHC Patient Forum in the hope of improving the system for the future. We meet once a quarter, I am the only person attending who was declined, other attendees (patients, families, charity/hospice workers and CHC staff) are keen for my input (even though it's negative) and seem to be listening and are trying to improve things but it appears to only apply to my local CCG not nationally. My feeling is I should get in there and let them know how it feels from the family and patients perspective and hope I can improve things for when I am older and need help.

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To all the people who have posted comments on Mark's experiences with Continuing Health Care & then, Restrospective CHC, can I say to you all , please, please do not give up in your attempts to get the monies that you are entitled to from the the NHS. I couldn't bear to read every single comment here as it it brought back the hideous and exhausting five and a half year struggle to get funding for my mum. She died in May 2014 and I finally got a cheque a few months ago. The process included the most gross incompetence, the 'manoeuvrings' of the awarding body to cherry pick comments to fit their view of what did & didn't qualify on the Needs Portrayal Document & Decision Support Tool, threats of leagal action from myself and the complete lack of interest, empathy and assistance by all the NHS people I had to deal with. However, to be constructive, I'd like to stress to all people embarking on this mammoth task the following:
(a) if you have carers looking after your relative, stress that they must make their written 'daily log' very precise as to what they observe that your relative is capable of, changes in abilities, mood, comments that the relative may make, whether they are eating unaided, how coherent they are etc. - relate it to the 12 different areas of need that are in the Needs Portrayal Document. If you don't have carers, make sure you keep your own daily record (b) keep every copy of a carers bill, monies you may have spent on buying incontinence pads/knickers etc. It costs a lot to get copies of these bills when it comes to proving what your expenditure has been (c) I would not advise employing a 'legal' person to take on your cases it is expensive and ultimately, however good they are, they do not have the same110% interest in getting justice for your relative that you do (d) look at the website for Beacon CHC (www.beaconchc.co.uk) who are so helpful and have an advice line which gives you a free number of minutes for a consultation with an expert. Beyond that, very best of luck to all of your who are undergoing this emotionally draining process and don't let the NHS win.

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My Dad was taken into hospital in January 2016 after suffering an "episode". Two days later when we asked the hospital staff what was wrong with him we were told "it's his dementia". This was the first time this dreadful, life-limiting illness was mentioned and we were devastated but not as much as when we were told that he was being made the subject of a Deprivation of Liberty Order and required a placement in a secure EMI (Elderly Mentally Infirm) unit, from which he was never to return. As we were self-funding we were left to our own devises to find a suitable place and told that if we did not do this quickly he would be placed in the first available bed and we would have to pay!

Fortunately, we found a marvellous specialist nursing home who supported us every step of the way, which is more than can be said for those in control of the CHC funding system. Despite my father being deaf, blind, unable to stand, having no feeling in his hands or feet, requiring feeding a pureed diet, suffering severe sudden drops in blood pressure, hallucinating and frequently lapsing into ASCs (altered states of consciousness) we were declined CHC funding until earlier this year when it was considered he was entering the final three months of his life, when we were granted Fast Track Funding for a three month period. Fortunately, for the NHS but unfortunately for us, he passed away before the end of the period.

However, I am not giving up the fight for the funding to which he was entitled and we will continue to fight until we have exhausted all avenues as I know he would have done the same for me had I suffered such an injustice.

It is wrong that, just because someone is of advancing years, this terminal illness should be dismissed as an inevitability of getting old - it is not, it is a dreadful condition, affecting not just the sufferer but also their loved ones. My lovely Mum passed away blaming herself for him being placed in the nursing home and my Dad was so poorly that we were advised not to tell him she had gone as it would have affected him too much mentally and emotionally - and still we are told that dementia is not a serious condition worthy of receiving NHS funding.

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I was sad to read your comments, especially when you mentioned that the most devastating part of the diagnosis for your father was that he was made the subject of a Deprivation of Liberty Order. I so wish that the health and social practitioners out there understood the use of Deprivation of Liberty Safeguards more and could explain to distressed families like yourselves just what they are. The term 'Safeguards' means that the person at the centre of all the assessments cannot be treated unfairly or without following processes set out in Law and they may be entitled to free legal representation in the Court of Protection. DoLS is there to give the patient who lacks capacity A VOICE and to make sure that the other authorities need to take note that anything done or decided for that person MUST be in that persons Best Interests. Please don't be afraid of, or devastated by DoLS. Please educate yourselves because DoLS might just empower you and make people listen to you. The Court of Protection has the power to make sure that Health Boards and CCGs follow a process and meet your loved one's needs. If you are the named representative on your loved ones DoLS Authorisation you are ENTITLED to be part of all the decision making processes and you can challenge the decisions. You can be a part of any CHC assessment and your views have to be listened to. You also need to know that your loved one is entitled to an advocate and DoLS can arrange for an advocate to support you as part of the process.
I work on a daily basis with families who are devastated by the ravages of dementia and who are torn apart trying to sort out the best for their loved ones. I am part of a DoLS Team and we pride ourselves on being there for those lost sad individuals who cannot make decisions for themselves anymore.
Stay strong - keep fighting for your loved ones.

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Continuing healthcare funding is unfortunately a complete joke. Have just had a third assessment turned down after having it aggressively taken away three years ago. After we received the tick box assessment recommendation of the "nurse" who took the assessment we noticed it was also signed by another "nurse" who wasn't present at the assessment. The day after we'd received the "nurse's" assessment we received a letter from the funding dept to say " not eligible" . This confused us as we were told that the final result comes from "the panel". When I asked why have we been told that we are "not eligible" before it has been to "the panel". We received a half hearted apology saying it shouldn't have happened. I will be emailing the appeals people in a strongly worded letter asking why protocol was not followed correctly. Also there are sections that I highlighted to the "nurse" at the assessment that have been completely ignored . We are told that the government keeps saying that there are MILLIONS of pounds in health benefits that haven't been claimed. Well it will stay that way if we aren't allowed access to these funds when it remains a TRICK BOX exercise and not as a DUTY OF CARE exercise , which it should be.

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We had exactly the same problem with my mother - struggled to get approval for continuing care, finally got it, and then had it withdrawn after a further assessment, when actually she had deteriorated significantly. Assessors would tell us she definitely qualified, then the official assessment report would say something completely different. Problem seems to be that the money just isn’t there, so they “game” the system to avoid pay-outs.

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I am a Specialist Nurse Practitioner for Dementia - sadly this case study is indicative of the very broken system we call the NHS.
The vulnerability of people with Dementia and their families/carers is what drives me to try and make a difference not just in the U.K. but also on a global platform in China.

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CCH is based on the needs of how bad the person is, I.e are they incontinent/doubly incontinent. Can the person dress them selves with out assistance? Are they can they be inclined to be violent, ..personally I think all older people of this generation should get free care, Alzheimer's of any type is a cruel disease, I don't feel decisions are made on ethnicity, that's an unfair comment, or perhaps one made in anger? I fail to see why a drug addict is given numerous opportunities for free rehab, alcoholics given free rehab if required, but if your elderly and frail and end up with a disease that affects your entire way of living you have to pay. Obviously if the person becomes unwell and has a husband or wife this does not mean selling your house from under you. But I do feel as it can effect your life savings it's something that the government need to change, I have been round a few nursing homes and I would be heartbroken if I had to lose my money to the care that is given in some. People should be allowed to keep their money, then donate it to the cats protection society if the want to. The Government need to find somewhere else to drain money from and allow these people the help they need.

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