How ill do you have to be to get NHS Continuing Healthcare funding?

Good morning, I am always interested in your articles thank you. My Husband had a series of strokes in 2012 which left him with serious mobility issues,hearing and sight loss. He also has COPD of the lungs, diabetes, enlarged prostate with bladder stones, and this year has been diagnosed with arterial fibrillation. He has brain damage from the strokes also vascular dementia. He has deteriorated considerably this year in every respect. I am doing all his care myself at home which is very demanding. I try and take respite which we are self funding for. Please advise me for the future. I would like him to be at home as long as I can manage him. Thank you in advance, Joy Lorenzi

My friend Michael is 83 and has vascular Parkinson's, stage 3 heart failure and is bed bound. He cannot feed himself, he cannot even turn over in bed. He cannot walk, wash , dress himself etc and doubly incontinent. But he has all his mental capacities. He was assessed in October 2017 for long term NHS care but that disappeared into the ether. Now the council have been out to do a financial assessment and told he would have to pay 80 pounds a week. The only care he receives each day are 2 care workers who call to wash him. This does not cover a fraction of his needs. Is the Council acting illegally in trying to get money from him at this time when he should be getting NHS long term care?

Thank you Gary for sharing this. I am currently in appeal process, awaiting date for the Independent Review Panel. My Mum has had 2 Decision Support Tools (DSTs) within the last 8 months. She has been Fast Tracked twice in the last 2 years, has deteriorated further, has a terminal illness and many health conditions. The first DST was 'lost'. We then had a second DST performed. This was so highly flawed. - just nurse Assessor- (who had never met my mum before), my Mum and myself. Assessor had no previous DSTs or any notes whatsoever, no medical notes, failed to go through each domain, would not accept any underlying needs which are now managed because my Mum is in a nursing home receiving 24 hour care. She played down all health needs. The Multidisciplinary Team panel - nurse assessor and social worker (who had never met my mum before) then met a few weeks later. I was not allowed to attend! Needless to say as a result my Mum no longer has a 'Primary healthcare need'. I have been to the Resolution meeting - that too was highly flawed in many areas. Same decision. I don't know if it will change the result by carrying on to appeal, but I will put up as big a 'fight' as I am able. This site and the brilliant Angela Sherman's ebook have been so very helpful - inspirational- My go to fountain of knowledge and helpfulness. I wouldn't have even got this far without them. I am very lucky to have both My Mum's GP and Head Nurse of nursing home backing me up. They have both written letters of support for my mum. It is incredibly draining to be dealing with all of this as well as looking after a very poorly relative. Good Luck to everyone - Let's keep fighting!!!

I'm sharing our story with others to demonstrate just how blatantly some CCG's disregard the National Framework. From the outset of our mum's recent Decision Support Tool (DST) assessment we knew the NHS Continuing Healthcare (CHC) nurse was determined to downplay each of our mother's needs. For example disagreeing with us that chronic urinary tract infections couldn't be related to mum's double incontinence. Sitting in faeces or wet knickers absolutely can cause UTI's and as a registered nurse myself I was pretty angry that a nursing colleague could be so willfully obstructive but then again we knew she was only doing what she was told to do which is to downplay needs at every opportunity. So we turned our attention onto the local authority representative, constantly asking if she thought mum's needs were purely social care or not and sure enough on one of the domains the lady put her hands up and said it wasn't something they could legally be responsible for. The CHC nurse was rattled by this but we insisted she document everything. A few weeks later the DST decision came back and despite documentary evidence that mum has a need beyond which the local authority can legally provide, the CCG refused to grant funding. When faced with this sort of deliberate obstructionism no wonder so many people are frustrated. We're now going through the Local Resolution process. Unlikely to change the outcome but nonetheless we're committed to carry on through the appeal process until it can be heard by others not working for this morally bankrupt CCG. Motto of the story - be prepared for the CHC nurse assessor to downplay needs so dig up some clinical evidence (NICE Guidance is useful). Put the local authority rep in the spotlight - can they legally meet needs or not? Insist, and I mean insist that everything is documented and finally - get some help and don't give up.