I'm wondering if anyone has any experience of the above in England please? My dad has PSP, diagnosed just over a year ago but we think it's been around much longer. Due to falls he has been in a hospital for over 3 months, just moved to a care home to be assessed for 2 weeks before hopefully coming home.
We know he's been given funding for this to happen, communication is pretty disjointed and we're trying to pin down where this has come from. I was under the impression that CHC funding, if allocated, can be used towards a private carer coming into his home. I've read over a few things but this feels so big and vast that it's all a bit confusing. Does anyone know about this?
His care so far (in terms of emotional support) has been shocking and all he wants is to be in his own house. Lack of communication, leaving him in an isolated environment, changing plans regularly. He is still totally switched on and I'm heartbroken and raging in equal measure about his experiences so far. Any guidance appreciated, thanks
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Lindle100
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Hi, post hospital care - respite, reenablement or can go by many names is free but can be at home or in nursing home. Some areas have specific respite/ reenablement care units. Its often 2 weeks but can be up to 6, thereafter many people will have to pay for care as care needs will be means tested and again xan be at home or residential care. Chc elugibility is determined by severity if care needs not by illness, its providing when serious level of needs are determined as nursing rather than social care needs and if granted can be provided for at home or residential care support. From what ive read it can be time-consuming and difficult to getbut worth it. Many people have posted on this site so its worth doing a search on here for chc, also search for Kevin 1 who has provided lots of good guidance and do look at care to be different website which provides a lot of valuable information. Not an expert yet as were not at this stage for my husband yet but hope the little i fo i have given provides a start xx
hi lindle 100 I feel for you I found it so hard when a love one is so I’ll with this p.s.p.
We are in Essex I tried for chc when husbands mobility was getting bad as well as getting him out of bed and showering him. I was turned down as chc reckon he was not I’ll enough. Though the Poor mobility he had a fall and broke his hip so spent six weeks in hospital with no exercise or help to get back on his feet, by this time he had declined badly and hospice step in and care was taken out of my hands. The chc funding was then granted with no input from myself at all so hopefully they will see the situation is on going and not going to improve, my husband is at home with careers four times day. Good luck hope you find the p.s.p association helpful in this matter.
Hello Lindle, CHC funding is usually successful if you meet 5 criteria for how seriously your condition is impacting you each in a scale of 1 to 3. If you search for the proforma online it will help explain.
it is most likely to be approved towards the later stages of the condition or where the complications and impact are already high.
It has to be approved by a special board made up of assessors and health staff. It’s helpful to get local district health staff or local Martin or gp surgery involved as it’s a very medically based assessment.
Getting CHC funding is not easy and is somewhat postcode-lottery based.
I wish you luck and hope you get the support you need. This site is a great place to get the true living experience and advice that is unavailable elsewhere. Do get a fall alarm in the meantime if your relative is living alone. Falling is one of the main and common symptoms of PSP.
CHC funding is awarded as your other replies indicate, where there are complex needs. If dad is still switched on ,and that is good, highly unlikely you will get it at moment. When you do apply download all the documentation your CHC use, your local carers association may be able help to prepare for assessment. He should be having swallowing , nutrition needs, pressure area and OT assessments performed by appropriate professionals, they love a bit of paper at these assessments!
You will be surprised how vocal you will become, my advice from my experience is to consider live in care when the illness progresses, used it everytime i had respite, same carer,and they remain in their home .
Refer yourself to social services, we were lucky our key worker was amazing.
I am too having a constant argument over CHC Funding and it’s a mine field. My dad is 4 years in with PSP and is actually in 24hr care in a care home due to my mum being more elderly than him and couldn’t cope after 3 years of looking after him. He falls frequently and totally shocked us with behaviour issues, to the point carers can’t be alone with him. He’s with it but the odd points he’s not, but still they don’t think he should be getting CHC Funding.!! His social worker is absolutely useless because I moved dad to another area of the country to be near me, and the social worker won’t get involved! The only positive I might be getting is from Dementia care matters as they deal with PSP too apparently. I hope you can get this sorted but while my dad was at home he was offered care but had to pay for it.
I agree with all the other responses - the CHC process can be very stressful but definitely worth it. Take the time to read through the CHC assessment forms as it will help you understand what they are looking for. My dad was fast tracked first time around but has now 'outlived' his fast track so we're in the middle of a reassessment. The whole thing makes me want to cry sometimes.
Regarding electing to have money rather than CHC-allocated carers/nursing home - this is possible and definitely worth looking into if you know you have a good selection of local carers. (We wish we had done this from the start). It's called a 'Personal Budget' I think, and you have to manage the pay/tax/holidays etc of the carers that you employ... or you can pay someone to do this for you - I think it's pretty standard work for a basic financial person. You then have the flexibility to choose who you want and where you want. I think the same thing is possible even with means-tested care (so, not CHC) but I don't know for sure. Our local authority kept putting us off doing it so we never did and it feels too late now... but in hindsight we would definitely have done it.
My dad's route into assessment sounds pretty similar to yours - many incidents caused prolonged hospital stays followed by a stay at the local hospice to be assessed. The hospice staff were the ones who drove the CHC process and were totally on our side - if you can find your champions within the system, they are worth their weight in gold! BTW my dad is still completely switched on but cannot speak at all - he got funding in this state.
I agree with Millidog, it sounds like your Dad is on an intermediate care package, which will end. Officially it's meant to be a max of 6 weeks but my Mum had it for 8 weeks on one ocassion and 6 months on another. It's important to make sure you are involved in assessing his readiness to come home and make sure the right things are put in place - he should have a visit home with an OT who will recommend equipment, rails etc to be installed before he comes home.
CHC funding application is daunting, getting a GP or Community Matron on board is immensely helpful. The key thing for PSP is the interconnectivity across the domains which is a challenge to get across to the assessors who like to look at things separately. The PSPA have a really useful document on their website, which I shared with our Community Matron to help with our submission.
We were able to get funding for Mum on our second attempt and this funded 4 visits and enabled Mum to stay in her own home until the end, which is what she wanted.
Finding good carers can be a challenge. Developing a good relationship with both the carers and the admin team that puts together rotas is important. Mum was getting alot of different carers which as her ability to talk reduced made things difficult. Explaining the situation to the care agency we got a core team of carers who we were able to explain PSP to and really improve the care Mum got. One example was a carer trying to feed Mum and she wouldn't open her mouth. The carer knew Mum understood, so thought she was being obstinate. When I explained that Mum couldn't get her brain to process the message to open her mouth, she felt awful that she had misinterpreted this and was so kind and gentle and caring with Mum.
I really feel for you. Getting CHC funding is tough and the process is long and involved. My husband had CBD and we were turned down when he was discharged from hospital, even though he was partially paralysed, tube fed and had pressure sores. We reapplied again and eventually received it.
The most important thing to understand is that it is a needs - based assessment and not directly related to the condition anyone has. You have to show a level of need against the criteria. You can find the criteria online.
I talked to the GP and local community neuro team who were helpful.
I kept a very detailed diary for 6 weeks which contained all the information about his needs ( e.g choking, tube blockages, pressure sores, breathing difficulties, pain management etc. ) I used this as specific evidence against the criteria. I then applied for a second assessment. The second assessment was done at home and this time it was agreed. The funding was used to pay carers to come in 4 times a day. I was offered a personal budget but chose not to take it. They also paid for a week of respite care every 6 weeks. The local health authority assessor was great but they are under huge finanacial pressure and it is also a postcode lottery.
I agree with Millidog that Kevin’s posts were really helpful and you need persistence and resilience to get through the process. It is also reviewed every 6 months so it is an ongoing process.
It is so tough and I share your rage at the lack of support and joined up practice. The systems need changing. There is a consultation out on palliative care at the moment.
Wishing you all the best in your fight for your dad
I was lucky getting chc funding first time. It is a combination of social care(washing, dressing, toileting etc)and health care(swallowing, mobility, pressure points, administrating medications, etc.
It helps to get a report from any professionals involved eg speech therapist(chewing and swallowing) dietician etc. The local hospice were very helpful too.
My choice was to hold the budget myself and choose the home for respite and the care company. I asked for advise on this from social services and got wonderful help three times a day and later at night when my husband was peg fed. If it had not been satisfactory I would have tried another care company until I found a good one.
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