Sandra at home surrounded by paperwork

Sandra’s story: ‘In just two months, nearly all of Mum’s savings had been spent on her dementia care’

When Sandra’s mum’s application for NHS Continuing Healthcare was turned down, she had to use her life savings to fund her own care. Read their story, and why we need a Dementia Fund to fix this unfair system.

Sandra got in touch with Alzheimer’s Society in March this year because her mum, Jean, had been turned down for NHS Continuing Healthcare funding.

Jean, who was diagnosed with Alzheimer’s disease in 2016, had been in hospital after a fall. While there it was decided that she needed around-the-clock, specialist care in a nursing home. She was losing weight, becoming very weak and had to be given fluids through an IV.

The system of support for people with dementia is unfair, unsustainable and needs an urgent overhaul. Its stories like Sandra’s that demonstrate the pressing need for action.

Sandra’s story

‘My mum, Jean, went into hospital after a fall at home in January this year.

‘It became clear to me that Mum needed a higher level of care, and she wouldn’t be able to go home. 

‘I applied for NHS Continuing Healthcare funding, but it was denied, even though at that point she had lost her ability to swallow.

‘Mum was discharged to a nursing home, recommended by social services on 5 March. It costs £1,200 a week. Her care is being paid for through her pension and savings.’

Left in limbo

In just two months (March – April 2019) Jean’s life savings are almost gone. At the time of writing, £10,000 has been spent on her care, with her money being spent at an overwhelming pace, and social services due to step in in a matter of days. 

For weeks, Sandra has been trying to find out how much social services will contribute to Jean’s care, once she can no longer afford to pay from her savings. The process has been fraught with difficulty, and Sandra still doesn’t have clarity. She has also been asked by the nursing home to sign a form committing her to paying top-up fees – if she doesn’t, Jean may be forced to leave. 

Left in limbo, Sandra doesn’t know how much she’ll have to pay, where she’ll find the money and whether her mum will be able to stay in the nursing home where she is recently settled. 

‘In just two months nearly all of Mum’s savings have gone. I’ve been asked to sign a form that commits me to paying the top-up fees when the money runs out. I don’t know where I’ll find the money.

‘I really don’t want to move my mum, as the care home is good, and she’s settled there.’

Sandra standing with crossed arms

Sandra's mum is paying for her own care out of her savings, but the money is almost gone

Healthcare lottery

Sandra’s experience is much too common, yet social care reform is at a standstill. The Government’s Green Paper on the issue was recently delayed for the fifth time in just over two years.

For too many families, the situation is desperate. Good care is hard to come by and often eye-wateringly expensive. Over the past two decades, the average cost of a nursing home place has almost doubled and is now nearing £1,000 a week.

People with dementia are at the mercy of a health lottery, forced to spend all their savings on care unlike those with other diseases whose treatment is paid for by the NHS. 

We need urgent action 

Families and carers of people with dementia can’t wait any longer. 

Alzheimer’s Society is putting forward new proposals for a Dementia Fund in this year’s budget. The Fund is designed to shore up the system and give people with dementia greater access to affordable, specialist care. 

The Dementia Fund would provide urgent funding, giving families a financial buffer that means fewer people will spend all their savings on care. People with dementia should be able to access care based on their diagnosis, rather than their finances. 

Why should Jean and Sandra have to struggle without the financial support they need? Help us to make sure people with dementia and their families get the help they need.

Will you support the Dementia Fund?

Stand with us by emailing your MP and demand the Government takes urgent action through a dedicated Dementia Fund.

Email your MP
Think this page could be useful to someone? Share it:

54 comments

Add a comment

I can't understand why this issue hasn't been referred to the court of human rights, frankly. It is a clear case of discrimination; if you have cancer or MS, for example, you are cared for by the NHS for free and maybe and hospice care is also free. If you are unlucky enough to have dementia - a terminal illness - you are abandoned by the NHS. It's disgraceful.

This is helpful
13

I find myself in a similar position - I am paying £16000.00 a month for my husband for 24hour 1;1 care . He has dementia with Lewy body and is deteriorating rapidly. This has gone on for 6 months and I have had to be persistent to get to the second assessment stage. The whole process is shrouded in mystery and I am at a loss as to what will happen when the money runs out. I feel that we have been very misled during our lifetime - we always thought that the NHS would be there for us . Peter happily paid his high rate taxes all of his working life in the expectation that himself and others would be supported at end of life times. This cruel illness and lack of support have robbed him of his dignity at the end of his life - shame on the government.

This is helpful
14

My parents worked hard all their lives to make sure they could leave us something . These care homes are greedy and why is it if you pay private it's almost £1000 per but the council only gets charged half of that if they are paying. I call that discrimination and a bloody insult to hard working people.

This is helpful
9

My mum has mixed dementia and we’re going through this. We have a good labour MP who’s signing this EDM and has been very supportive. If you voted or continue to vote Conservative this is the sort of NHS you get. Put aside all the rubbish and lies written about Corbyn in the right wing media and for once let’s give a caring Labour govt the chance to put things right. They created the NHS and will fix it.

This is helpful
11

Something seriously wrong with this assessment Sandra as it's clear that your mother needs CHC and I suggest you seek advice from a solicitor.
No one should have to bear the anxiety caused by the so called assessment people who seem to have no empathy.
Our government give app fourteen Billion pounds to foreign aid every year without knowing where the money will end up.
We also give app ten billion to the European Parliament every year.
How much does it cost to pay for the House of Lords filled with people who have had a privalidged life.
One could go on and on about the wastefulness when people like you require urgent help.
I am 76yrs old and have just been down the road you are going down caring for my lovely wife who I have to feed,dress,wash see to all toiletry needs as well as clean the house, washing,ironing,shopping etc without any respite unless I pay exorbitant costs.i can't have a conversation with her and I take her out in a wheelchair.
My heart goes out to you and everyone who has this dreadful disease and their carers

This is helpful
12

I couldn't agree more Bill the UK Health Service is broken & needs reform urgently! Unfortunately none of our Politicians are brave enough to even publish the Green Paper promised about 3 years ago. They have cause to worry about their jobs at the next General Election. They are unable to keep their promises about BREXIT, or speak the truth about what is serious to people like you & your Wife.
I am doing my best to campaign about CHC which is what you both need, & have paid your taxes over the years to get. My website details are given above in mid May.

Best wishes. Peter Garside

This is helpful
12

We too face a similar situation with funding. My wife has been in a nursing home for 5 years now and we were initially self funding for her care. Later she started suffering from seizures so applied for CHC, which after an appeal was granted. Lat December a review was undertaken and as my wife had not had any seizures for around 18 months the funding was withdrawn. I appealed and lost so we are now self funding again. The decision to me seems to be based on the fact that my wife although totally immobile, doesnt speak but is compliant and quite passive is no trouble and seems quite well. No account is taken of what happened in the past nor of what might happen in the future. I am going to ask for a reassessment as I think that her dementia is well managed and under control we are penalised for her having good preventative care. Totally unfair in my view.

This is helpful
11

We have a similar story. My mum collapsed earlier this year and was taken to hospital. Whilst there social workers decided she could no longer live alone and recommended she be moved to a care home nearer me. To be honest a huge relief for me. She lived in Essex , I’m in Kent, constantly driving around the M25 was taking its toll on me!
She is now in a home closer to me, however to find her care I have had to increase the number of days I work - just when I was hoping to retire!
She has no money and never owned her own property.
The council pay half the fee and I signed an agreement to pay the top up fund,
I’m constantly worried about how long I can sustain this.

This is helpful
14

Local authority funding is available once saving go below £23,500 you need to apply in advance as once the money has been spent its very difficult to get it back. Continuing health care funding is difficult to obtain the criteria is aimed at people with unpredictable complex long term conditions who need support which goes beyond the local authority responsibilities. The criteria needs to change and the Government recognise we are at the beginning of a dementia epidemic which can affect anyone of us.

This is helpful
13

With a MIL suffering from vascular dementia for five years we are getting to the point of needing a care home. With this country willing to spend vast amounts of money on the equality of the population, how come a very sick dementia patient is not equal to a cancer sufferer..it seems that our government is so taken up with Brexit that we have been ungoverned for three years.. it really is a disgrace that those who paid their taxes all their lives are the ones to be ignored and they and their families are put through impossible financial demands in order to allow the truly desperately sick to have a comfortable and cared for end to their lives.

This is helpful
8

I’ve been through this too. Ultimately my mum was ‘lucky ‘ in being granted CHC, which was simply because her condition was variable and unpredictable. It’s deeply unfair that the criteria isn’t severity of need but variability. I recommend using savings to buy an annuity to cover care fees. This worked out well for us, as it covered the period we had to self-fund, and now is providing additional income.

This is helpful
13

My mother has spent 80 thousand to fund her own health care in last 2 years now she is down to 23 thousand and still having trouble with means assessment

This is helpful
10

Thank you for exposing the shameful lottery existing in our Health Service regarding applications for NHS Continuing Healthcare. I have been campaigning since 2016 to help people obtain their Right to financial benefits which are not subject to a means test from NHS. The health condition has to be "complex" but knowing how to make a claim properly is vital to get the desired outcome. Alzheimer's Society have a link to my website set up following the death of my Wife Pauline. She had Alzheimer's Disease & I was not coping on my own in our Home. I was forced to Appeal but won our Rights which enabled the best possible care to be provided for the rest of her life!
Full details are on https://continuinghealthcare.wordpress.com/
Thousands of people have visited this website & received help. Several known to me are getting funding for Nursing Homes charging £1350 every week! Its cheaper if you are able to cope at home of course but space is needed for cover 24/7.
Good luck with your claims for essential help from NHS. Its a shame you have to fight for your rights but that's what is currently required.
Peter Garside

This is helpful
9

Thanks for sharing, Peter. We hope you're keeping well.
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’ and relies upon identifying the person’s needs in line with the criteria laid out by the Department of Health.
Here at Alzheimer’s Society, we suggest that the best way for people to access NHS Continuing healthcare (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.
Take a look at ‘Tips on preparing your case for NHS continuing healthcare’ (https://www.alzheimers.org.uk/get-support/help-dementia-care/nhs-contin…) and download our free booklet for further information.
-
Alzheimer's Society Blog Team

This is helpful
14

Please put www. at the front of my website as it doesn't link at present.
Thanks.

Peter Garside

This is helpful
9

Hi Peter, both links have been fixed - thanks for spotting that.
--
Alzheimer's Society blog team

This is helpful
13

Thank you so much Peter. God bless you

This is helpful
13

I've applied for this benefit on two separate occasions for two different people. It seems to be routine to have the original application refused. As long as all necessary details are in the original request, then when you make the appeal you have to elaborate on what has been written in the original . From what I remember, nothing new can be added in the appeal. Every detail of the refusal needs to be addressed. It is a nightmare dealing with this particular benefit . In my own opinion they don't appear to want to allocate this to anyone. I did get it for both people, however, it did take about 15 months and many hours of hard work.

This is helpful
15

Following a social services assessment a care package has been put i n place for my 98 yr old father who has dementia.
I have been looking after him alone for 15 yrs. The allocated care package is 4 visits a day. In that time he has had very few showers not enough of fluids and is completely disoriented by 12 different care workers who come and go.
I was at breaking point when I asked for help but the situation now is such that it would be easier and better for dad to not have Carers coming into his home.
We need to provide a N.H.S. funded care service not driven by profit as these so called care agencies are.

This is helpful
11

This is a terrible situation which will unfortunately continue to worsen.
A comprehensive review and overhaul of the system is definitely required.

This is helpful
9
Leave a comment

Your email address will not be published. Required fields are marked with *

The content of this field is kept private and will not be shown publicly.