PSP Association
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Nineteen and a half thousand a year!

We have had an Active Recovery team in, since B got home from hospital , he was barely able to stand, due to being in bed for a week. We have been awarded part CHC for the nursing. As yet, I have no idea what that is. We have been told that the Social Services will only help us after we have paid £375 each week for Social Care, which means that we have to pay £19,500 .00 per year,before Sheffield SS will help us . The SS lady wanted me to make an immediate decision as to what I wanted to do as we can't continue indefinitely with Active Recovery. I said I couldn't, as I dont know the amount of contribution we will be getting from the NHS. She is ringing back Monday. I may appeal the CHC findings. Someone gave me the name of a law firm that deals with this. As yet, I can't find it in my posts. My head is reeling. Any help would be appreciated. X

16 Replies

Hi robbo1

Sorry to hear that the system is crap for you

I would appeal CHC as everybody should get that in my eyes .we got the nursing only in December then needed a review march and was awarded full funding

We have got a good matron doctor and social worker that has helped us

I hope you can get sorted with this



Thanks, Sue. So do I! X


Hi Robbo I'm new to this as Mum was only officially diagnosed a couple of weeks ago (prior DX was Parkinson's for first year) but I've been told about Beacon - an organisation that can offer advice don't know anything about them yet as we're just about to start looking into whether Mum would be eligible for any CHC assistance. What I can't understand is why there can't be a UK wide policy for conditions like PSP, I understand that each individual needs to be assessed but once a clear DX has been established surely that diagnosis alone should be used to inform the assessment process?


Hi soozjj

I am sorry to hear about your Mum.

Agreeing with your post.

You're Mum has a legal right to request a CHC assessment. However if she does not need care from carers she is highly unlikely to be eligible.

Did you download the Beacon Toolkit? Its very good indeed and you will find most of you answers there.

Best wishes to you and you're Mum



Hi Kevin, thank you it's all still a bit of a shock. Mum was having carers 3x weekly from the local Renablement service and her partner was doing the rest, I am staying for a couple of months (I live abroad) and without us Mum wouldn't even be able to get out of bed. The care has now stopped but we have been given a list of care agencies and told she will have to self fund from now on. She cannot walk unaided, even with a rollator or frame, without one of us close by to steady her or she would fall (she's already had some pretty serious falls - badly broken wrist, suspected broken nose, bruised ribs) she now needs a wheelchair outside, she cannot dress herself, she cannot go to the loo herself, she can only eat food that is diced into small pieces, already a small woman she's now lost about a stone in weight. I've been home a few weeks and she's deteriorated in that time. Cognitively she's still as sharp as ever but her speech and strength of her voice is significantly affected so is finding it hard to communicate. She also coughs and chokes almost every time she eats or drinks. Also she has obstructive sleep apnoea for which she must use a CPAP. We now have an electric bed and electric assisted easy chair and she's seeing a speech therapist, OT and has a lovely Parkinson's nurse, but trying to get info from the different services is a nightmare. And it seems talking to her and her partner they've never even heard of CHC...apparently no one has mentioned it to them?? Anyway I'm going to read through all the Beacon stuff and anything else I can find on the net and all the very helpful info here & I'll ask some questions about it when I accompany her to her appointments next week. Finally my heart goes out to anyone affected by this horrible's f*****g horrendous :(


Hi soozjj

Pardon my brevity it's late and I want to get back to you quickly.

So sorry you have this in your family. Yes, it is B' horrendous!

You will hear a lot of people talking authoritatively about services and self funding. Be careful there are some 3000 pages of legislation, guidance and regulations. Very few actually understand much of it. I speak as an ex-NHS community practitioner - They just don't have the time!

Get a Continuing Health Care Assessment now! Definitely.

Download the Beacon NHS (Arms length) advocacy toolkit. It is superb.

You will see there are two steps for the assessment.

Checklist - quick and straightforward and the DST.

The DST can be a battleground. Funding is short. You need to be there (for both assessments) and to fight your corner.

First step is to request an assessment asap. Then read the toolkit.

If you like come back to me and I will give you further info on preparing for the DST. You need to go in fully skilled up and with pre-prepared evidence. It is not difficult.

In our last DST review we would have lost the funding on the scoring if I had not stood up to the assessor and challenged his scores on every point. Being prepared is all.

Right hand side of the page - just register and download the documents.

Do come back if you want more info re. preparing.

Sorry for the brevity.

Wishing all of you the very best.

It is totally do-able :)

Edit: It would have helped if I had read your post properly. Sorry.

Tip: Stay with Beacon for now. Don't go wider... Reason being that there are sites which will keep you reading for weeks... I read for months! Beacon has it all in good detail and it is pretty faultless.

I can flag up the stuff they don't emphasise enough.

Age UK have a good overview document you won't need after Beacon


Care to be different is superb... but put together piecemeal and requires many hours of reading. That's where I started before Beacon put their pack together. Worth a look - but I can send you precise links to particular articles when you are ready.




Hi Kevin, wow thanks so much for all the advice and for responding so quickly, I'm still a bit daunted by how complex it all seems but also feeling much more confident now :) thanks again Sooz :)


I can't believe that your Mum is not entitled to it. However if they can get away with not paying it they will. Like you nobody had ever mentioned CHC funding to me until last September when my husband went into a Care Home. Following that an assessment was carried out.

We didn't hear anything despite everyone trying to find out vwhat was happening. Then just before Xmas we were told he qualified but the nurse hadn't filled in another form. She did that and sent it off.

We were told after Xmas he had got it. Then I had a phone call telling me the Nursing Homes I was meant to go to see. One a BUPA Care Home will be the subject of a report on TV Channel 4 tomorrow night I have discovered! I had turned it down after looking up CQC reports. It wasn't the only Inadequate home we were given to look at!! It is a total disgrace. I don't know how old your Dad is or how fit but it may well be that eventually he will be unable to care for your Mum. So look up Nursing Homes and their CQC reports.

This is a brilliant site and I would have sunk without it and the amazing people on here.



Hi Marie

Sorry to read of your struggle to get CHC for your husband, it seems so wrong that these assessment processes are so difficult and drawn out, especially when people are at their most vulnerable. I hope we can get CHC for my Mum. Thank you for the advice about Nursing Homes and CQC reports, my Mum's wish is to stay at home if possible, which we hope we'll be able to facilitate via adaptations but I think I'll still check the CQC reports on some local homes too because I've realised from reading the posts here that things can change very quickly.

Thanks again Marie for your advice, so great to be able to come here for advice/support from people who kindly share their knowledge and experience


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Quite right, so do I! x

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Hi Robbo

I'm so sorry to hear your news and I am not surprised you feel somewhat overwhelmed.

First off - keep all of your receipts for any equipment or care services. The government was planning to put a cap on how much a person should spend on care and care equipment after which all care and equipment is provided free of charge.

It looks like it will be retrospective. The proposed life time figure was £75,000, but in the election T. May was proposing a higher figure.

Second off - You cannot loose by appealing thew CHC decision and the appeal process is not difficult. Do consider calling the Beacon Advocacy Service 0345 548 0300 I have talked with them in the past and they are exceptionally good. The first hour is free and you can use it up in part hours. You are not committed to use their paid service if you decide not to after the free hour. I had thee telephone conversations with them for my free hour. It was very helpful. Thereafter their charges are very much lower than a solicitor and they are experts in the field. It's all they do.

As I guessed before you have been awarded NHS-funded nursing care. It is paid at the same rate across England. For 2016/17, the rate is £156.25 a week.

This is a different fund to that of CHC. They have clearly decided you do not qualify for CHC. However it is the same CCG Team who manage it.

The NHS Funded Nursing Care does not affect the Social Services means test.

If you appeal the CHC decision and win your case they have to refund the money that you have spent on social care with the Soc. Services.

Social Services: Even if you have to pay all of the care they will still put it in place for you. They will find an agency and work out the care plan with you, if you want. By accepting their help you are not committing yourself to accepting the fact that you do not have CHC. So it is safe to go ahead with social services and simultaneously appeal the CHC decision.

The thing I find odd about the Soc. Serv. decision is that they are asking you to pay all of your contribution before they pay their component. However at 3 hours care a day the annual cost would be very roughly in the region of £20,000. It may be that they do not expect you to reach that level.

Age UK have an advice line (trained advisers) which is open 9.00 - 5.00 Mon to Fri. 0800 4346159.

The very first thing you need to do is to get the CCG to give you their decision in writing. This must also include a copy of their DST assessment. That is the assessment they did to decide if your husband was eligible. They are legally obliged to send you these. Any appeal starts with those.

Wishing you the best of luck



Thank you, Kevin. Yes, I have the decision in writing and the assessment, some of which I disagree with. The lady doing the assessment said we could discount the morning needs, as we had already sorted that out. Our Neuro. Support worker said that surely we were there to establish if there was a need, not who was sorting it.

I did write that I felt that the unpredictability of PSP had not been fully understood on the form.

We haven't had a financial assessment or been asked to have one.

I will call Beacon.

Thank you for your advice. It is much appreciated. I am feeling very stressed at present. Rx


Good luck Robbo - these things are so stressful.

The neuro was correct. The assessment has to ignore any care whatsoever. It is purely and solely about the level of need. It sounds like you have a case.

wishing you both the best



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Think they're called Beacon but Kevin will no doubt help you there. Marie

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O agree. I los the CHC case and then won it on appeal witjh a great team from the local hospice1#

ll jill



Hi Jill! I will ask the hospice team what they think when we go on Thursday. X


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