Real stories

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

Almost a carbon copy of what we went through with my mother. We had no help at all and paid for all of my mothers' care. Selling her house. But for a lady who was totally bedridden and couldn't feed herself, it was so depressing. It upsets me so much, I try not to think about it. My mother passed away in 2018.

Unfortunately my mum went into a home 3 years ago. I suggested CHC due to her behaviour, not eating, seizures etc I fought hard and was at the assessment process and she got it. However it is reviewed annually a social worker who met my mum for 5 minutes judged she should not have it as she seemed fine (she said hello and smiled) we were not invited or aware she was having this assessment. So I decided to appeal on the terms of not being invited or present for the assessment. The social worker who I'd never met was rude and uncompassionate and said my mum presented healthy and well!!!!! I was fuming!!! My mother doesn't recognise me or my family and requires in all care needs. I asked for another assessor which happened within days who said the CHC should not of been turned down as my mums health has deteriorated. So again we have it, but it wasn't without a fight. Carers have to be strong and stand there ground in these situations, which is sad as you are watching a loved one disappear in front of you.

Good luck with your continuing battle against a proven corrupt system

I am currently running “campaign for my brain” on social media for this exact reason! I went through hell and back , to get CHC for my mum. Even though she was such a clear complex case. They act unlawfully al the time and twist the national framework. I am so sorry that your mum had this suffering, but I am glad she was able to pass with you by her side. I have emailed BBC panorama several times with no response to cover the scandal that is CHC... perhaps Alzheimer’s UK would have some better contacts ?

We worked with 4 agencies and not one of them told us about this grant .. instead social services acted like vultures when it came to payment for my mums care fees. Someone my sister came into contact with through her work advised of this grant and my mum was awarded funding 2 months before she died - my sister and I have been fighting for 18 months to have this backdated to cover the fees paid - the NHS haven’t even had the vommon decency to reply to to our claim, it is now in the hands of the ombudsman. It is utterly disgraceful the way people are treated .

This situation is because this and previous Tory governments has refused to adequately fund adult social care . They have also many times promised a bill on how adult social care (inc dementia care) would be funded and have yet to publish such a bill
If you are struggling with this then you know where the blame lies..lack of proper funding .CCGs and Local Authorities cannot provide care if they dont have the funds.Our society has lost its way when the most vulnerable are not supported to live dignified lives

How discriminatory can this be, I live in Lancashire and my wife had Alzheimer’s which eventually became a section order . The whole system worked for me even finding a care home capable of treating her severe case ,albeit a fair way away , I cannot praise the help I was offered I did have issues re the funding but got my facts right before making a complaint And was eventually phoned by the head of the ccc and even given her number in case I had other problems . Yes they did try to invoice me thousands but again I had myfcts to hand and received an apology. Well done Lancashire

My husband is in a care home has been for 12 months. Cannot walk anymore, has to be fed, will nit drink so carers are aware they have to give him a drink. He has a cathater, a colostomy bag. He does not talk, has vascular dementia, had bowel cancer, liver cancer, head cancer four strokes. Is type 1 diabetic and still not able to get chc. Im told he is not ill enough how ill should you be? The care home fees are draining me im 68years of age , i manage but all dreams have gone. He is terminally ill but told they have to know when he will die to be eligible!

My husband has Alzheimer’s. Now has bowel cancer which has spread. Been given a Timeline of 3/6 months. But can’t get a Assessment done on him in hospital for CHC funding been told he doesn’t meet the criteria! He isn’t showing any signs of pain. But I keep saying his brain might not be registering pain. The day after he had a Colostomy he was up walking around on no pain relief!

Re Headline: "Mark's story highlights how it is people with dementia who fall between the cracks..." Is a most inaccurate comment. When people with dementia fail to get the chc funding they are legally entitled to it is because both they and their families are mostly too stressed to fight this illegally conducted process. It is all to save money (and keep their own overpaid jobs) that the decision makers target such low growing fruit. They are nothing less than despicable and I hope they suffer the same ill health as the poor folk they are denying this funding.

My mother started wondering and had to go into a care home. She was violent towards staff and other residents. They started sedating her. She had a UTI and admitted to hospital this week. Care home refuse to have her back and now having to look for care homes which can take her with difficult behaviour. House and all savings will go on her care if we can find a home. What advice would you give on funding and finding home that is not like a prison?

My Dad was diagnosed with vascular dementia ten years ago , my Mum cared for him at home with just family help . Five years later he fell in a care home for respite and broke his hip , he never came home again . Our council at the time offered three care homes funded , one was forty miles away the other two ten miles away , two buses for my Mum to visit . One was closed down shortly after and the other had residents sat in chairs in straight lines and stank of urine and worse. My sister said she would not have left her pony in their care! So we chose a care home close to my Mum accessible by bus when no lift available. , £2000 + a month , paid for my by parents , who had worked all their lives , bought a house , cared for their elderly parents at home in their nineties and babysat the grand children too. Fortunately we were assigned an amazing social worker who appealed on my Dads behalf that the thres homes offered by the council were woefully inadequate and fees were halved. Each year my Dad was assessed for CHC but refused , he was due an assessment in March of this year which was cancelled but they didnt have the deceny to inform us . By the time they rang to rearrange, too late my Dad had passed away . In the late stages of dementia , turns out vascular and Alzheimer's, not violent , bedridden doubly incontinent can do nothing , no episodes of lost consciousness until pass away. The criteria does not cover dementia , it's a joke , if my Dad had known how he was living for the last two years he would have wanted a trip to Switzerland. However on his death certificate, which I recently re read , too upset to look at earlier , one cause of death carcinoma if the bladder !!!!! We were told just polyps, still being sent appointments in care home , if he had cancer why this not ascertained by the assessors , I have written to the CHC three weeks ago by Special delivery . Guess what no reply !!!!

Is there moves by government to give free care to patients in care home suffering with this progressive disease Alzheimer’s I am horrified our savings and home will be GONE

We have just started the journey my husband has Lewy Bodies for about 6years has been very aggressive physical & verbally he has just gone into a nursing home can't do anything with assistance except eat which he eats very well all his coordination has gone his legs are very week can't see him walking much longer he has just come out of hospital they can't find out why his heart rate is so low between 35 & 45 may give him a pacemaker which I don't really won't,they it not to prolong this but give him quality seeing as most of this quality has gone makes me smile as most of him as gone ,so we have started the process but when we had filled the form for continuing health care the social worker said can't see you getting it ,I don't agree with the way they are assessed I've looked after my husband up to now and know what he can do for him self but the nursing home can assess him in a week dementia can be different from hour to hour from all the other letters I can see we don't have a chance ,I didn't won't to put him in a home like most people but it just becomes impossible breaks your heart and most times not self inflicted good luck to all xx

Today we have been told my dad needs to go into a care home due to late stages of vascular dementia, we were also told his house would have to be sold , his money he has each month i.e. Pensions etc they would also be having .,then I was told he will be allowed 23.19p to live on each week,not only have I lost my dad , who no longer knows me but we are going to lose the house I grew up in ,social services have decided my dads a safeguarding issue , and he can no longer live on his own, so the house my dad has worked hard for has to go ,I asked him to sign the house over 10 years ago I said because if you don't the government will end up with it ,his words were I'll burn it down first they ain't having my house I've worked hard for,it's absolutely heartbreaking ,it doesn't pay you to own anything really , !!! Then I was asked why do you want ???? Care home it's expensive ,my response I've given the best care I could give my dad for 8 years he deserves the best , he's treated like a king,if your having his house I want the best for him. ....the system is wrong !!!!