Hi there, I’m new to the group my Step-Dad was diagnosed with PSP a couple of years ago and his symptoms have worsened since then. Main issues are poor mobility, incontinence, confusion, low mood/motivation etc. My mum is sole carer for him and feels unable to leave him at all due to falls risk/continence. They have no formal care support and have just started the continuing healthcare assessment I wondered if anyone had any hints tips if you have been through it? We have the decision tool which is quite helpful but lots to take in!
In terms of finances we’re a bit confused about of he doesn’t not qualify for CHC funding and needs to go through social care will this be means tested and will my parents savings be taken into account? Mum has been saving for his future in case he needs full time care but doesn’t want this to affect what he is eligible for now as she’s reaching burnout and could really do with some respite. Sorry so much I want to ask I want to be as helpful as I can for them but understand this is a complex process. Thanks in advance for reading!
Katie
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KatieHeyes
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If you do a search on this forum for Kevin_1 you will find a mine of information.
I'm so sorry you're having to go through this process but please also ask your GP for help. If your Step Dad is having regular visits from the Community (District) Nurses, they too will be able to help. In fact it was my husband's nurses who applied successfully for him.
I'm sorry to say it can be a bit of a roller coaster and post code lottery these days, but you need to illustrate the worst case scenario.
Thank you so much for your reply and thoughts. He has a Parkinson’s nurse who knows him well who applied for the assessment so hopefully we can put the best case forward. I’ll definitely check out the info thank you! ☺️
Sorry to hear you’re going through this. My mum has CBD which is very similar and I applied for all the CHC funding a couple of years ago for her and we got it…
It’s a tough process - they deliberately make it that way. The panel will assess your step-dad against each criteria (nutrition, cognition, mobility etc - there should be a template online somewhere) and ‘score’ him as priority, high, medium or low depending on how much help he requires. You need a priority or 2 highs to get the funding. With my mum we timed it to apply when I knew she would score high enough in every category - she was having falls and infections quite often and there was a dementia element so cognition was poor too.
It’s a hard process where they’ll unfortunately try and mark the needs down so you really have to fight your step-dad’s case and explain how bad things are on the worst days. My advice would be to overwhelm them with evidence, e.g. any paperwork showing any hospital records for the illness or any infections, ambulance call outs for falls, care notes/diary from your mum to display the day to day needs etc
And as for the funding for care - my mum has always been self-funded because her savings were above the threshold (think it’s £25k or something like that) so if you have a lot of savings or own your own house then you won’t qualify for any funding, other than the potential of CHC if you win that - more chance with PSP or CBD given their complexities but unlikely that people with a sole diagnosis of dementia would get it. It is complicated and sadly no one-stop shop where they explain everything!
Thank you so much for this information I’m pleased your Mum was successful and hopefully getting the care she needs.I’ve ready the CHC tool so feel a little more familiar with the categories so need to get our evidence together. Would you ask the GP for hospital records please as he has been in with infections?
Yes I would - or if he’s been on medication for the infections his GP might be able to provide a written history with the details? Anything to prove it’s on an official medical record and not just your say so really.
I would say that the Parkinsons nurse is your key person. S/he is likely to be known and respected by the assessor. But still have your evidence ready - describe the worst days and also emphasise the unpredictability of the condition. The PSP CHC guide really helped us. And if you have to appeal a negative decision there is an organisation called Beaon which helps you through that process. Good luck
I'm in the similar situation as your Mum finds herself. I'm the main Carer for my Wife, although we do have private care support coming in Monday to Friday, which can prove to be expensive and eat into one's savings, ( put away for a rainy day, it's now raining cats and dogs for at least the past 3 years). Fortunately we have struck lucky and found 2 wonderful ladies, that gives me a lot of respite during the day and I feel very comfortable, as does my Wife, with the care, support and kindness they give. We are also lucky to have the support of our grown up Family and what is really great, is that our three Grandson's accept their Grandma is very poorly. No longer the same fun loving person that use to look after them during their early years and treat her with the kindness, love and respect she had always given them during their informative years. Also, Avon and Wiltshire Mental Heath Partnership have give us massive support, especially the North Somerset CIT, for which they deserve much credit for their professionalism and understanding of "Our" needs not just the Wife's.
It was suggested that we should apply for CHC Funding, for which I did. Completing a mountain of paper work and having an assessment carried out at home, as soon as Covid rules allowed.
No joy, we were turned down for NHS CHC funding, as not eligible.
I do not know or understand how this decision was reached, as her illness is so rare that I would have thought it meets the eligibility for funding. So I'm in the progress of appealing this decision and shall let people know how I get on.
Food for thought, is your Step Dad in receipt of DWP Attendance Allowance. He's eligible , go to direct.gov.uk/disability for advice, your wealth doesn't come into it.
Such a thoughtful and kind response thank you for taking the time. It’s a very upsetting experience for everyone to see such change in him the kids are amazing and help him with his walking frame and love bringing him treats and biscuits which he used to do for them! I’m so sorry you were turned down it does feel like a very ruthless process and I wish you all the luck with the appeal. I’m pleased you are getting good care support that will be our next venture depending on the outcome of the assessment as mum is really in need of a break you give me hope that we’ll find the right people soon so help share the support with!
Thank you for this- I’m aware he does get some benefits but I’m not sure at what rate so might be worth a call to check that this takes into account his deterioration since we first applied! Thanks
I was advised when applying for PIP that you need to fill in the forms based on the worst day, IE if one day he can walk 20m unaided and another he would not be able to walk a 2m without putting himself in danger then fill in the form based on 2m. I try to keep this mentality with all dealings regarding benefits.
Hi. I’m a carer for my mum who has CBD and I have recently spoken to the social care team for advice and support. My understanding is that for social care, if someone receives help in their own home, the value of the house is disregarded. Savings are taken into account but there are online calculators that can help understand the costs. I’m arranging care now as I can’t continue on my own and the social workers have been fantastic, explaining the law and local policies. They really do want to help. Age UK have some good leaflets that explain info too.
Hi, my mum has CBD. If the ill person has more than £23,500 to their name the financial assessment will not go in favour. Joint accounts and savings plans count towards this. Money solely in the partners name does not count. I think if an owned home is still required by the non ill person then this is not considered as part of the calculation. . We applied for CHC back in January and my mums application was rejected. We are planning another application as mum has declined dramatically. The key thing I have learnt is that it is an entirely a postcode lottery. Just because someone with identical illness and stage has obtained it in one health authority it doesn’t mean someone else will elsewhere. I have read people’s success for CHC whereas my mum in a more advanced state has not been successful. I wrote to my local MP, no interest to support. They said they have no jurisdiction or authority to interfere with the process. Another thing I have learnt is that it is purely based on healthcare and not social care. In simple terms, how much involvement is needed by a nurse rather than a care worker. If care involves medical treatment and nursing care and not just help with day to day living this makes a case stronger. It’s a horrible process and we are bracing ourselves for it again. I wish you every success with it.
Sadly the whole CHC process is such a lottery. My Mum was assessed in February, at which point she was bedbound, unable to speak, doubly incontinent, eating only purees and had the start of bedsores. At the DST meeting the social worker didn't attend and the only professional alloted to attend was a nurse who had only started the week before and Mum had only been at the nursing home for a week anyway. I was unable to attend due to social distancing rules at the home and my sister attended without having seen Mum for several weeks as Mum had had Covid and hospital visiting had been suspended for 2 months as well.. Safe to say she just got the nursing element which was pointless as she was coming home. The appeal is ongoing, but sadly Mum passed away yesterday. My advise would be to research, get every medical professional you can on board and give your absolute worst day scenario. It almost feels like they don't want you to be successful but fight for what you are entitled to! Dont give up and I wish you all the best on what can be a very difficult journey. Please look after yourself too.
I’m so sorry for your loss Thomas such a sad time I hope you and your family are doing ok. And I thank you so much for your advice and support especially with everything you have been through.Take care
CHC - get the District Nurses to help the application is a minefield! AnneandChris have it spot on!Our experience was that the CHC nurse was working through her checklist verbatim.After half an hour I stopped her and told her very pointedly that PSP does not follow her beloved check list🤬. After that she has been brilliant so don’t just accept a poor assessor.
Hi Katie, have been reading your letters & responses abut CHC & wondered how you git on. Was you successful?We are being assessed for the second time tomorrow.
Thank you so much for thinking of us. Unfortunately our application was unsuccessful which was very hard for my parents. The nurse involved was very shocked as she said she has patients with similar level difficulties who do receive the funding. We’re going to appeal but just figuring out the process! My mum was also very distressed by the persons approach in the assessment so I do hope others have had better experiences. My mum has just employed a career for a couple of hours a week for now as she so needs a break so hoping that makes a difference too.
Wishing you all the best for your second assessment 🤞🏻
Hi Katie, it is so hard to get any help. Our first assessment was turned down because they said it was care needs & not health! Being degenerative each day there seems to be something new to cope with.
If we get turned down again I don't think I will have the strength to go through another meeting, it is so stressful. We are waiting to hear from them.
We are appealing our first assessment, you have 6 months from the date of the letter.
I advised them in writing & sent it recorded delivery, it was signed for but I hadn't heard anything back. I phoned & they had no idea about the letter. It is so frustrating.
There is a company called Beacon & they will help & advise you. You get 90 minutes free advice. It really would be good for you to look as there is a lot of advice on their Web page.
That’s so helpful to know I’ll support my mum to call them and see if they can advise us on our appeal. We still haven’t received the letter yet so it’s all a waiting game 😞
I understand how you feel the meeting seemed to be ruthless and exhausting I wish you all the luck with your appeal and really hope you get the funding you deserve xx
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Finally an answer to the Continuing Care question.
Travelling with CHC funding 
Continuing Care
Impact of family death on PSP
Update on Dad 
