Dementia Support Line
Real stories
Our experience with NHS Continuing Healthcare funding: Peter's dementia story
Peter's story is a memorial for his beloved wife, Pauline, who passed away in 2016. Following his experience with NHS Continuing Healthcare funding (NHS CHC), Peter is determined to share his advice on applying for continuing healthcare funding to help others in similar situations.
My wife, Pauline Garside, was diagnosed with Alzheimer’s disease in 2013, but we had coped with her disabilities and memory issues for several years.
After a chaotic discharge from hospital with no promised care at home, we learned about NHS Continuing Healthcare Funding (CHC) and discovered we were eligible due to our level of need.
However, we came to learn that achieving CHC funding was not straightforward. In fact, we had to take the NHS to an Appeal Tribunal in August 2015.
We won the appeal at the tribunal and the CHC funding was provided. Not only that, it was backdated to the original application date, covering all expenditure incurred over the previous year.
The service we received was excellent. We got everything we needed very promptly with a high level of personal attention and courtesy.
Pauline sadly died very suddenly in February 2016. The NHS did not accurately diagnose her terminal health condition until a few days before her death.
As CHC was in force, we had been upgraded to full around-the-clock hospice arrangements at home. This meant Pauline had a peaceful death where she wanted, surrounded by love and care.
Getting the right continued care
After Pauline’s death, I had more time to reflect on the often chaotic nature of the healthcare system in our country.
There are hundreds of thousands of people, young and old, caring for loved ones in their homes, often under intolerable levels of stress.
Others have spent their life-savings and sold their homes paying for nursing home fees to look after their loved ones unable to cope on their own.
Many of these people should have got NHS Continuing Healthcare funding, which is not means-tested. It is tested on the basis of 'need'.
Alzheimer’s disease is a 'Primary Health Need', as was agreed by NHS in 2003. Thereafter, if the level of need is sufficiently advance, the NHS should provide a 'personal budget' to fund care requirements.
There should not be any question of people funding the cost of care from their private savings, or via Local Authority funded social care.
There are thousands of people blocking beds in NHS hospitals or living in expensive nursing homes. This is because effective care in their own homes isn't readily available for everyone.
A hospital bed costs around £850 per day. Yet, NHS CHC funding can provide 24/7 cover at home for around £1,000 per week (at current prices).
I believe the NHS could save money if there was joined-up thinking between hospitals and care in the community. CHC should provide all the funding for people with advanced Alzheimer’s disease, as well as countless other medical conditions.
Pauline at home in 2012
Campaigning for effective continued care
I asked myself what I could do to make life better for people living through what I had just coped with.
With the help of a friend, I created a website, Continuing Healthcare from the NHS by appeal, in the months following Pauline’s death.
This includes a full reflection based on my experiences in arranging the care for my wife, titled Reflections on Making an NHS Healthcare Appeal for the Care of Mrs. Pauline Garside, which is available to download.
My website would act as a memorial and provide guidance for others in similar situations. I want to help people obtain CHC funding as the assessment procedure is far from straightforward.
The NHS would deny CHC funding is rationed. However, I believe there are a huge number of eligible people not getting this valuable benefit. This is likely due to limited NHS resources, and their lack of preparation ahead of assessment meetings.
Not giving up the fight
Within a few weeks of publishing my website, Alzheimer’s Society used it as a referential example of a personal account from someone who was refused CHC funding and appealed against the decision. Many thousands have visited my site.
Hopefully, sharing my story is doing a lot of good and people are obtaining their right to professional, long-term care for loved ones.
Sharing my experiences is an ongoing task. I will not give up until every eligible person in the country with Alzheimer’s disease is in receipt of their rights to NHS-funded care. The battle was won by Barbara Pointon in 2003, whose website helped and encouraged me enormously.
We need now to tell everyone in the country there is help available if you know how to get it.
Advice from Alzheimer's Society
Alzheimer’s Society continues to do all it can to influence government policy. We are aware that people living with dementia are very often unfairly excluded from accessing NHS continuing healthcare (CHC).
A diagnosis of Alzheimer’s or indeed any type of dementia does not carry automatic eligibility for CHC, as much as we would like it to. Eligibility for CHC funding is never ’condition specific’. It relies upon identifying the person’s needs in line with the criteria laid out by the Department of Health. We would argue that many people with dementia should be eligible for CHC. If the test for a ‘primary health need’ was carried out appropriately in the assessment, more of them would be found eligible for this funding.
However, it is a flawed system and until government policy changes, it is all we have to work with.
We would suggest that the best way for people to access NHS CHC if they think they are eligible or they represent someone who they think is eligible, is to inform themselves fully of the CHC criteria, before the process starts. Read and prepare as well as you can. Gather evidence required to support your argument and understand what information and support you are entitled to receive from the CHC team, who are carrying out the assessment.
Alzheimer’s Society’s publication When does the NHS pay for care? has information and tips to help.
Next steps
- Visit Peter's website to learn more about his experiences.
- Join our campaign to demand the Government Fix Dementia Care.
- Download the Department of Health's booklet, NHS continuing healthcare and NHS-funded nursing care.
- Learn more about understanding and caring for someone with dementia, with tips on how carers can look after themselves too.
Peter Garside
saysThank you Leigh & advise you to keep records of all your expenses as on winning your case the NHS should refund you in full.
Two scores in the High category should be enough to get CHC but with resources low NHS may try to ration health care. Keep fighting & get professional assistance. My blog recommends someone but Alzheimer's Society are unable to offer advice of this type.
Good luck.
Peter Garside
Leigh
saysLast week I attended a CHC Assessment at my mothers care home. Mam has Alzheimer’s in the advanced stages, glaucoma, type2 diabetes and has had five falls causing facial injuries and bruising whilst wandering aimlessly all day and night. The falls are due to exhaustion. During the assessment The multi disciplinary teams input found she was was eligible on 2 counts but failed to reach the higher level on the third count. I am going to appeal and I was told by the assessor they rarely get passed on appeal. I will anyway .... thank you to Peters blog I was able to relate a case for my Mam. We pay full fees at mams care home. I am retired but I have had to take a job to help pay towards the fees, clothing and pads and any extras my mam needs on top of the care home fees. If the Council would just pay for the social care costs, washing dressing etc. we don’t mind paying for her accommodation. Any nursing care costs should be paid by health. I will let you know an outcome of the CHC appeal.
Tee Montgomery
saysI was very impressed with YOUR stamina & victory on behalf of all Carers seeking to nurse their loved ones.
Every credit to you Peter! It is a deliberate misguided minefield out there. The system is so very corrupt and we have to fight for our rights. The people who have no one to fight for them end up forgotten people in nursing homes-their life savings and property is what the care home managers are after. SO VERY CORRUPT INDEED.
I will one day write our experience with the NHS but for now it's too much of a heart wrenching ordeal and very very sad. (Dad is fully funded by CHC-at home. My 80 year old Mum is his main carer, we have 2 carers 4x a day for personal care, a sitter for 2 afternoon-so mum can get out and the our local hospice recently arranged an overnight carer 3x a week to give mum a bit more rest) There is help available if you know your rights...
Take care Peter -
you are amazing💪
Peter Garside
saysThank you Tee for your kind words. I hope one day you will be able to write your story to encourage other people to get their Rights from our NHS.
I have discovered recently that the Cambridgeshire & Peterborough NHS area is around £48 million in deficit for 2017/18. This is more than three times the figure previously agreed with NHS England. The NHS is in an appalling state & only an independent Royal Commission can find out what to do with it long term. Details have been published by www.healthwatchcambbridgeshire.co.uk . Only people who know their Rights & how to get them stand a chance in my opinion.
Best wishes.
Peter Garside
Peter Garside
saysPatrick thanks for your update 4.3.2018 & wish you well with your Application. I would recommend you get Professional assistance from Kate Hurley by following the Link page on my website to her website, then make contact. She was of great assistance to me when making our Appeal. If you get it right initially it will save you a lot of time & anxiety.
Best wishes. Peter Garside
Patrick Hawkins
saysThank you so much Peter for your very kind help and advice.
Much appreciated.
Peter Garside
saysThank you Norman for your encouragement & comments about obtaining CHC . A lot of information can be found on Barbara Pointon's website concerning her battle with NHS. The link from my site will direct you to her Report which is worth reading.
I was very impressed with her stamina & victory on behalf of all Carers seeking to nurse their loved ones.
Hopefully this site will answer your technical questions.
Best wishes. Peter Garside
Hannah
saysIt's appalling how difficult it is to get funding. My mum was placed under a section 3 and was given 117 aftercare, last year it was deemed because her alzheimer's is getting worse and she is less likely to cause a fuss when being dressed and toileted that the nursing element of the funding would be taken away - less staff needed to look after her apparently?
So now I have to pay £325 a week and the remaining is paid by my local council, whereas before she was entitled to have it all paid. She has enough savings to keep her in her current home for another year and a half, after that I will have to place her in a council recommended home, which are always less than adequate.
It's truly heartbreaking
Patrick Hawkins
saysThank you again Peter for your reply and advice.
Since I have had the opportunity to read the Eligibility criteria for CHC.
My wife, after six years progression since she was diagnosed with dementia in Alzheimer's,appeared to meet all the criteria.Therefore,with your blog and the Eligibility criteria information passed to my G.P.for comment.The G.P's secretary very quickly responded with the advice "to proceed with the application".
Would be really grateful if you would kindly advice the best process from this point.
I will,in the meantime,check on Barbara Pointon's website.
Norman Crofts
saysThis paper is a fine example of the courage, love, and dedication that is required in looking after the needs of a loved one. I too have been all the way to final appeal so I can appreciate the knowledge,hard graft, and stamina required to deal with all the demands that arise in dealing with the task.
With regard to the NHS note PCT.E.22?02 - 03 referring to Alzheimer's and the suggestion that the illness qualifies a sufferer to NHS Continuing Healthcare funding seems to be contrary to one of the basic principles of assessment which is looking for a primary health need and not the actual illness. It would be interesting to see its wording. I have not been able to trace it on the web.
The scoring in the care domains is of course subject to the further terms of the indicators, Nature, Complexity, Intensity, and Unpredictability. Theoretically a primary health need is assessed by looking at all of a person's care needs in detail and relating them to the four indicators. In practice in my view this means that the NHS has control of the assessment, although it pretends to be impartial, by being able to change the emphasis of the needs indicated in the various domains. It would be interesting to know what percentage of applications are successful and how much the NHS has had to pay out in recent years. I suspect a declining amount.
Bill Burrows
saysThe North of England Commissioning Support's CHC Appeals Office in Durham City turns down 70% of applications I was told last Summer. Having been through the gruelling process myself on behalf of my wife,I consider the whole thing a complete farce. The DST is written by the NHS to exclude its responsibility and throw this onto Social Services. It is not strictly a medical report but a report to decide who pays! An utter disgrace in this its 70th year. To any one who gets involved in a DST, fight tooth and nail and involve those who can give relevant advice.
Jan
saysThank you so much for sharing your story. We are not at this stage yet but there is much valuable information there, should we need it in the future.
Peter Garside
saysPatrick NHS CHC is not the same as Local Authority Social Care. CHC is managed & funded by NHS . It is not means tested.
If you follow the links on my website you can read what Barbara Pointon achieved in 2003 by Appealing to the NHS Ombudsman. As far as I know this achieved the Ruling that NHS were responsible for the provision of Care of people with advanced Alzheimer's Disease. Quoting this Case enabled me to win our Appeal Hearing as my Wife scored a high enough level of Need on the Assessment Test.
However be ready to fight for your rights in the current financial climate.
Best wishes. Peter Garside
Patrick Hawkins
saysFollowing my post above.Shortly after my wife was diagnosed with dementia in Alzheimer's in 2012 I was advised,from a good authority,that I should be entitled to Continuing Health Care support.Therefore,I asked,as I understand,is the process,my G.P.to check and advise.The G.P.advised that it would it would NOT be granted!.At that point the Alzheimer's Society assisted my Attendance Allowance Claim and 25% Council Tax Rebate.Further enquiries were made to Bromley Council Healthcare.who also advised that, as I had savings in excess of £23 k I would NOT be entitled. I would have to pay for my wife's care,whether at home,or in a Nursing Home..I was able to source three Carers, who have Nursing Home experience, who work on a rota caring for my wife at home, whom I personally fund,with only the financial assistance of Attendance Allowance payments circa £80 per week currently.A.A.pays one days care per week!The Council Tax Rebate equates to £10 per week approx so most is personally funded.
I have also been advised that Continuing Health Care is NOT means tested!!!!
Please,if possible, provide,the legislation to support this advice for the benefit of claimants when talking to G.P.'s and Local Councils.
Peter's story sadly appears to raise false hopes from most claimants experiences in their efforts to obtain Continuing Health Care.
All-in-all with local Councils strongly resisting applicants claims for Continuing Health Care and continuing to make cuts to Social and Welfare Services I am amazed if ANYONE is in receipt of Continuing Health Care support!
UNLESS,of course, someone has very reliable information and advice to the contrary.
KathrynTaylor
saysToo true dementia is an illness till money is needed wouldn't wish it on any one no one knows what it is like till they ha e to deal with it .Well meaning well I know doesn't wash!
KathrynTaylor
saysToo true dementia is an illness till money is needed wouldn't wish it on any one no one knows what it is like till they ha e to deal with it .Well meaning well I know doesn't wash!
p preston
saysi had chc assessment for wife turned down even though up at night incoherent speech turns on all taps cannot be left alone ,i get 3 hrs a week to rest,i try my best alas getting older have no life but i just carry on until i drop,then what!
Jo Haddigan
saysI'm only three years onto the illness withy husband. Don't really know the speed of development. What to expect and when?
Alzheimer's Society
saysHello Jo. Thanks for getting in touch. You may benefit from speaking with one of our Helpline advisers to talk about your husband's condition. All calls are confidential and this may be helpful if you’re seeking information, support and advice: 0300 222 11 22.
Alternatively, you can contact the National Dementia Helpline Advisers through our Live Online Advice service: https://www.alzheimers.org.uk/info/20012/helpline/686/live_online_advice They’re available between 9am-12pm from Monday to Friday, and also 6pm-8pm from Monday to Wednesday.
Our online forum Talking Point is a useful resource for support and information: https://forum.alzheimers.org.uk You can share experiences with other people also affected by dementia. You may wish to join an existing discussion or ask your own question. Learn more about this service here: https://www.alzheimers.org.uk/info/20013/talking_point_-_our_online_com…
Patrick Hawkins
saysWith all the Government cuts impacting on Local Councils Social and Welfare Funding,Local Councils strongly resist ANYONE applying for Continuing Health Care funding,whether at home,or in a Nursing Home.Even very basic services have been cut;;::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::
e.g.my wife over 30 years Diabetic Type 2,Diagnosed with dementia in Alzheimer's in 2012,,and partially sighted was discharged from BROMLEY Healthcare Podiatry Service BECAUSE her feet were okay!!Common sense tells, her feet are okay due to proper care!Many,many,more cuts in services could be listed!!Do you really think that this Council, and other Councils, would look to fund Continuing Health Care in the present economic climate and continuing austerity cuts?
Mark Hatzer
saysThank you so much for this, Peter. It really is a God send for people in our position. Well done & very much appreciated. Best wishes. Mark Hatzer.
Patrick Hawkins
saysThank you so much Peter.I will take your kind advice and read on your website what Barbara Pointon achieved in 2003 by appealing to the NHS Ombudsman.This is a good "stated case".I am so pleased that you ,after an Appeal Hearing, your wife scored a high enough level of Need on the Assessment Test.I am very sorry to read that your wife,Pauline,passed-away in 2016.It is obvious that you gave Pauline the best care and attention during her battle with Alzheimer's.You are doing excellent work in helping the hundreds of other sufferers and Carers through all the difficulties and problems Alzheimer's brings to their lives.Thank you again Peter.
Cynthia Hudson
saysPeter did not mention that if funding is back dated one is entitled to interest, it will not be given, one has to ask as I did.
Bill Burrows
saysMany thanks for the tip. Having to ask comes as no surprise. Darlington Borough Council Adult Social Services department took it on board straight away! I do not agree that Social Services should be involved in funding in the first place. It is an NHS matter and I hope to campaign against the infamous Decision Support Tool...a document pretending to be of medical standing but written to the NHS's own rules purely to decide who pays...namely not the NHS. Disgusting!