Real stories

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

My mum back in hospital after a 2 week respite she had a fall broke her wrist has dementia dad on his knees took out savings to pay 3 grand for two weeks respite was home 3 days now back in hospital kidney failure fluid on lungs and heart been trying for weeks to get help awful system no one cares dad very proud and both in eighties no one gives a fan unless you can pay so sad and dreadful treatment of the elderly i am also trying to care work live keep going though dementia is so awful

Following the unexpected death of my Mother, my Father, who has Alzheimers, was placed in emergency care. Last week, I experienced my first MDT meeting, and unfortunately, he was declined. Although, it could not be considered much of an assessment, more about having to argue over 12 domains of my Father’s health, whilst the assessor and MDTs played everything down (my Father’s social worker was a no show, but that was quite telling).
To be out of my earshot, the assessor informed me they would leave the room to discuss ‘the four key issues’ these being ‘nature, complexity, unpredictability, and intensity’. They covered an awful lot of subject matter in a conversation that took them a whole 3 minutes, before returning to the room to inform me he was declined.
Up until the loss of Mum, my Father was an NHS patient. Two days after Mum passed away, Social services became involved and whilst visited by both his consultant and a social worker, he was passed over to social services and his consultant left, although she had noted how his condition had deteriorated. She has never been in contact since, because the care home he was placed in is 'out of the area'. Now in the hands of the social services, with a social worker who is adamant he is to self-fund. What chance do you have with CCG when they work in conjunction with Local Authority. It is a bureaucratic nightmare. In the meantime, will await assessors decision in writing and will appeal.

This is so sad to read Mark but I’m so glad that you are fighting back against the system. We too had a similar situation with social care with our local council and we fought their decision and won. My advice to anyone is do not give up the fight to get what your loved one is entitled to. It’s not about cost it’s about care and they have a responsibility to look after you. We found most people in their job do not really have an in depth knowledge of the system and therefore mistakes are made by them all the time. It’s stressful but do not give up until you get satisfaction.

My first attempt for funding my husband failed. When he died shortly after, I appealed, and was successful in retrospect. So all his money was refunded for the three months he was in care. Alzheimer's site had informed me that interest was due on the monies but only if you asked! This was true so I did so and was successful. I am so indebted to Alzheimer's for all the valuable information I read while caring for my husband. It was the only help I recieved. Keep up the good work (Talking point) .

Mark sums up the position so well in his headed paragraph A Difficult Journey. My wife went into full time care and for the first 7 months was refused CHC.Catherine was discharged from hospital in February 2017 after a fall having been diagnosed with Alzheimer's in June 2014 and the decision was taken that I could no longer manage at home. After unsuccessfully appealing the decision...which took 4 months... the matter is proceeding to an Independent Review Panel. I informed the Darlington CCG on 24 July that they would need to send their papers to the North of England Regional Team in Leeds.I have sent the Leeds Team all of my papers but despite 2 reminders from those in Leeds the CCG have not replied!! The Society's Helpline team are now assisting me and it feels like a lifeline after all the setbacks endured to date...Bill.

We have just been turned down for funding for my dad. The first hurdle has been the process, it has taken 6 months from the nursing assessment for the decision to be made. As a health professional myself who is involved in nursing and DST assessments for the first time I have had my eyes opened to the postcode lottery of assessment time and subjectivity of the assessment itself. I was convinced as a family member participating in the DST and dad gaining 1 severe (2 severe by social worker) and 5 high that dad would meet but oh no despite the social worker recommending and the family attaching a supporting letter we received the call to say no. I am astounded as a nurse that the nurse assessor says dad has no primary nursing need. To mention a few mixed dementia now a third added of lewey body, AF, Heart failure, Fluid on his lungs, compound fractures of spine. He suffers bad with anxiety and sun downing often up all night shouting and hallucinating. All this lends itself to unpredictable and complex health needs. We have chosen as a family to manage dad at home which requires 24 hour 1 to 1 care. Dad self funds and we will keep on working and managing his care to ensure he receives the care he deserves. We will appeal the decision. The laughable thing is that we are looking at a weeks respite for a short break and thought we had found a care home we all agreed we were happy for dad to be but then told by the social worker we can’t place him there as he requires nursing care..Really!!!!!!

My mum, god bless her, was in receipt of full funding when first admitted to a nursing home. This was because of mums unstable mood swings and inconsistent sleep patterns, which apparently required an extra member of staff at night. However, since mum has now deteriorated further and is confined to bed, all funding has stopped. Today (9-3-18), we recieved a bill for an extra £3100 per month back dated to last November. So basically, nearly £16,000. As a family, we weren't involved or invited to any of the decision making processes and feel quite powerless.

My husband has Alzheimer's and cannot speak or do anything for himself he's doubly incontinent . We've tries twice for continuing health care. Last time was last year when he was in hospital for about fifth time with pnumonia and was told by the social services although he fitted most of the criteria because he wasn't classed as violent he wouldn't get it. We are now going through it for the third time but we're not getting our hopes up

I am seeking CHC for my father who has Dementia and Alzheimer's, and is confined to a bed unable to care for himself.

The first 2 attempts both went no where because, firstly social services and latterly the district nurses, failed to follow their own process properly.

I have just managed to successfully get through the first questionaire again, so now ready for the next battle. I wonder whether it is worth employing one of the many private firms offering their services to help secure CHC?

Has anyone any recommendations?

It is hard enough caring for someone with this devastating disease. Why do we always have to have a battle to get care we have all paid to have.

The criteria for assessing NHS continuing care is in my view deliberately complex and on most counts set to fail the individual.
So even if you are paralysed, being fed by gastric tube and dependent on others for all your care needs it is unlikely you will be eligible.
Care and health were split as two entities when the NHS washed its hands of caring for our elderly.
The two major keys that will open the box are a diagnosis of a terminal illness with an expected death within 6 months.
Or having an unpredictable, unstable medical condition which requires frequent qualified nursing interventions.

We are going through similar issues now with my mum. Unfortunately she doesn't have any of her own monies available. I have been waiting for a CHC assessment for a while. Adult Social Care want to place her in a nursing home before the assessment is complete and are continually asking me to top up the funding, which I am not able to do. The homes available are all in different towns were I would not be able to see her as regularly as I do. It's a very stressful time. Patients with dementia get a very poor deal!!

Mum was turned down for continuing healthcare despite the fact that she was unable to feed herself or take medication. She wouldn't drink without assistance either. Without self funding care she would have become extremely I'll or even died. Nothing will change as long as the budget controllers are making the decisions on who is eligible.

a family member got taken in to hospital with aspiration pneumonia, got told she was not able to go home and had to have nursing care! Got told we would get funding. No funding was put in place after 4 meetings, still denied Chc. Total deteration then was told not ill enough for chc. Died 3 days later! Think the chc is a waste of time and only help people that never paid a day's tax or ni. Or a different colour

We are just embarking on this road with my mother. She has not officially been diagnosed with Dementia but she definately has it and it has progressed dramatically since the death of my father almost 4 years ago.