PSP Association

Personal budget for healthcare from the NHS

My wife had again an assessment for continuing healthcare from the NHS. I was told that as of October 2014 there is a new system in place called 'personal healthcare budget'. This is not the same as the personal budget for social care and support. Have a look at the following website:

This basically means that whoever is eligible for continuing healthcare from the NHS can request for a personal healthcare budget which is not means tested. Apparently it can vary a bit from county council to county council how much money can be made available, but it is a significant improvement over the means tested social care and support budget.

As the PSPA has recommended everybody with a disorder such as CBD, PSP, Parkinson's, etc. should apply for an assessment for continuing care. Even if you do not yet qualify, it means you are in the system and when the need comes, matters move along much quicker. My wife unfortunately now qualifies for a full assessment and when she is considered eligible we are going to make use of the new option.

You do not need to get the GP involved, get in touch with your local community services and take it from there.

This new option is only available at the moment in England.

11 Replies

Thank you for pointing this out to us. My husband has CHC but we have not yet been told about this. At the moment I get all the help I require and whEn I took my husband away for two separate weeks earlier this year, the care was also provided in the self catering holiday homes we went to. It would be interesting to find out how much money has been allocated. I hope your wife is successful in qualifying for CHC although I know you would rather she had no cause to apply. It has made a huge difference to us and it annoys me when I hear some folk have been turned down.

Best wishes

Nanna B


Thanks for the information very useful - our community matron told me not to bother to apply yet as my wife had mobility and she would be turned down . Her "mobility" is two three shuffling steps bent over her frame with me standing guard against a fall sideways which she does with consummate alacrity !


Mobility is only one of the 7 criteria that are considered. So there may be other issues that may qualify your wife to be eligible. And in any case, even if she were not yet eligible it is a good thing if she is in the system, as that speeds matters up when the time comes. By the looks of it I would consider the opinion of your community matron somewhat bizarre. To me it looks like your wife is already no longer able to move on her own because of very serious risks of falls. So if I were you I would apply for an assessment as described in the personal guide to PSP by the PSPA. You can also contact the district specialist nurse from the PSPA for help and support to get this on the rail.


Same here. P has falls daily and needs constant supervision with mobility (same as Georgepa), continence and cognition yet our community matron told me this week that he would not qualify for CHC. Who should I ask now ?


If P is being monitored by the neurological department of the hospital, I would contact the neurologist for support and advice. Secondly I would contact my PSPA regional advisor and discuss the matter and see if they can help.

I take it that P did had an assessment for CHC and based on tat he had a full assessment to decide if he is eligible for CHC . And at that stage he was refused. So what were the arguments? They cannot just refuse without providing an explanation.


No assessment yet, I was asking for advice from the community matron as to who to approach for one. I had already mentioned CHC to the crisis team leader but he was non-committal too ! I will take your advice Gerko, thank you for your reply.


If you ask for a CHC assessment they MUST do it by law. Then cannot say that they don't want to. So unless I have misunderstood you, your situation is very bizarre. I had requested an assessment two years ago even though I knew that my wife would not yet qualify. I followed the recommendation of the PSPA. You can read up on it in the relevant section in the 'Personal Guide to CBD and PSP. If you have not got it, then go to the website of the PSPA which is

There you then become a member which is free of charge and then you can request a copy of the Personal Guide to CBD and PSP or you can download it. And again it is free of charge.

I do not know where you live, but here in Cambridge we have the Neuroscience department at Addenbrooke's Hospital that specialises into those neurological disorders. And Dr James Rowe, who features on the title page of the website, is in charge. He and his team have been more than helpful and also assist in case you run into the kind of problems you seem to run into.

Also once again, if you contact the PSPA representative who is responsible for the area you live in, they will give advice and help


Thanks so much, that is so helpful. I will follow it up tomorrow.


Thanks I will follow it up .


I would like to reinforce Gerko's comments. In the assessment guidelines for CHC it advised that the assessment should be based on a Patients bad day and also to consider any likely deterioration over the following 3 months. I haven't looked at the CHC website in a while and doubtless those with the purse strings will be looking for ways to tighten them but if there was a requirement before the goal posts were moved then that need is still there and should be met. I also worry about the advice from your community matron, it sounds a bit like toeing a party line.

If you make an application be sure the assessor doesn't overlook that the first P in PSP stands for "Progressive".

Best wishes, Jerry.


Will do thanks


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