PSP Association

Dorothy Thompson

Can anyone tell me how to get an assessment for NHS continuing funding care initiated?

I know I have asked before on this

blog but I am so frustrated and coming to the end of the line. My social worker said she requested an assessment through the District Nurses who subsequently told her that it had to be via the gp. We hardly or have ever hardly been to the doctors so they do not know my husband, we have not seen a neurologist since last November but our next appointment is 2 weeks away so perhaps I can talk to the neurologist and in the meantime I am going slowly made because my husband is so demanding!!! We live in London where you would think that perhaps the services are better but you would be wrong. All I am ever told is to get more "care" but the carer has just left and my husband is in what I call his "dementia" mode, which is being demanding, repitious

And refusing to calm down.

Sorry, just had to let it all out, thanks for listening.

Dorothy Thompson

13 Replies

Hi Dorothy

Mum got her first 3 assessments from the Community CHC assessment nurse. Her name and number were given to us by mum's Parkinson's Nurse Specialist.. I must warn you that mum was unsuccessful in allof these assessments. However when in hospital recently the ward sister asked for a CHC assessment because of what she'd seen of mum and thought her care package may need changing. This time she passed the assessment and has been awarded full NHS funding!

Good luck!




National Health Service Continuing Health Care-is funding to help people who are at end of life/suffering terminal illnesses. It is a complex system and you will do better if you get your PSP advisor on board with it as they know what to say in the forms and can fight your corner-it is hard getting this for PSP even though they are clearly deserving of it and can be a long battle now due to the cut backs but they are entitled to it and you mustn't be put off.


Thanks, it's just possible and more than likely probably that the person being assessed would have to actually be in hospital before NHS chf is considered. Apart from PSP - ho-ho - my husband is a fit guy.

Ironically,My husband's present care package was first initiated by the casualty nurse at our local A&E last year, if you think my blogs are hysterical now, you should have heard me then!!!

Many thanks, LizzieF - upwards and onwards.

Love Dorothy thompson


The Complex Care Nurse who did mum's assessment in the hospital showed me the forms and very kindly explained the criteria mum needed to meet and the scoring system. Mum needed to have at least two 'severe' scores in order to get full funding. Because she had a grade 4 pressure ulcer and her cognitive skills and understanding were deemed to be nil she scored 'severe' on both counts and high or moderate on the other questions.. As a result she got the full funding so I get 4 carer visits per day and a night sit 5 times per week! The assessment was done on the Thursday and the following Monday I got a phone call to say mum had been successful. In previous assessments in the community we had waited months for a decision! x


We got ours started while mum was in hospital with an infection-the hospital were happy to complete the forms. I got the paperwork sent to me through looking up the NHS continuing health care dept and we went from there. it takes a lot of time but do go through with it. It's a lot of money when it comes and is really helpful although due to the speed of mums progression and official errors we didn't receive it until the week after mum passed. Keep as much evidence as you can -photos of bruises, logs of fall and ambulance visits etc, infections and dates. They need written evidence. It makes it so much easier for you too. If you are not getting anywhere, contact your Parkinson's nurse as she acts on behalf of the neurologist and knows how to get things for you, including hospice help. Social workers are needed to be involved with the application so they must be able to start the ball rolling too.


Hi Dorothy, I got started on the CHC assessment after my husband had had 12 weeks (one day per week) at our local hospice. Just before this came to an end one of the hospice nurse put us in touch with community specialist hospice nurse, she in turn referred my husband to the local community nurses and within 2 weeks the initial assessment was done. My husband scored high in terms of needs and care. When I've seen your previous blogs it sounds to me that your husband and mine are at a similar stage of PSP. When the assessment is done the "rule of thumb" is to answer the questions thinking of the worst days.

Having said all that 7 weeks on since the assessment we have heard nothing. We were told it would take about 2 months before we were given an outcome of the assessment. Hearing about other's experience I expect we will be rejected.

Interesting, my husband is in a BUPA nursing home for 1 weeks respite care (the only home who would take him locally because he is only 59 yrs.) After doing a detailed assessment at home, it was deemed he needs full nursing care. I don't disagree with this outcome, but the NHS will probably have other thoughts. Will keep you posted.

Good luck and I hope you get the assessment process started soon.



Hello Dorothy, have you thought about getting a carers assessement? You are entitled to this by law and it helps to clarify your thoughts on all that is needed to get you the help you need to enable you to look after your husband. You can then use this to further clarify your husbands needs. Keep a diary and note down all the things you do for him and how long it takes for each bit. Especially note the times you are awake at night seeing to your husbands needs, any falls, disasters etc and how long it has taken to sort these. Write it all out and attach it to your carers needs assessment and keep copies to attach to the other assessment if/as/ when you get it.

Chris was diabetic and having graphicaly described what it is like to suddenly realise that he had just given himself a massive dose of fast acting insulin instead of his long acting and having to stay up until 3.00am monitoring his blood sugars so as not to let him go into a coma, I'm sure it helped to get him his higher rate of attendance allowance.( I assume you have already got attendance allowance?) Keep pestering and put a note up in your line of vision to phone social services at least once a week and keep explaining to them how difficult it is for you to cope. Really pile the agony on, after all we all hide that agony- let it out when it is needed to be let out and you surely need it now! Make enquiries to see if there are any carers support agencies/support groups in your locality and enlist their help. I could ramble on for ever but hope some of this is helpful. My best wishes Teena2


The assessment for continuing care should be initiated by your GP.

If you do not have done it already, then please download from the PSPA website the document: 'Your personal guide to PSP' You can also contact the PSPA and ask the specialist nurse to send you a copy. This is the most fundamental document you ought to have and it will tell you precisely what to do and how to do it, e.g. how to get an assessment for continuing care.

Also, the specialist PSPA nurse will give you guidance when you call her and will also contact your GP if necessary as many GP's have no clue what PSP is.

Also visit the following website from the NHS:



Hi All

We've had the assessment, two weeks ago to be exact, and what a joke - forget downloading ANYTHING from the Internet or Age Uk or the Dementia Society etc etc, all the goal posts have been moved. From the questions asked even I could not understand why we were going through it !!!!!

Suffice to say, the candidate would have to be, sorry but I have to say it, at deaths door before they received the funding.

Thank you all for your support.

Dorothy thompson


I am in the middle of applying for CHC for my father in law. We are having the second assessment on Wednesday. The district nurse and his social worker are carrying out the assessment. I have got a report from his Physiotherapist, OT, Speech therapist and his GP. I have also written a letter to submit with the form explaining what my 80 year old mother in law has to do everyday and night. Poor man is suffering so much from this horrible illness and no longer has any pleasure in life. It is very important to get as much evidence as possible to support the application...Good Luck!! Anne


I googled the people at NHS Continuing Health Care for my health area and emailed them directly. They soon told me what to do as they thought I was overstepping the process! It worked though! As it so happened almost at the same time mum caught a bad infection and ended up in hospital so I waylaid the staff there to fill in an assessment form (called the assessment tool) the CHC people sent me and although the hospital messed it up and said mum had Parkinson's and dementia it did send the right people to the doorstep to make a proper assessment! My tip is as always to keep evidence of behaviour, falls (pics of bruises etc) download a checklist of PSP stages and highlight the bits in all sections that you have already reached.They need evidence to show to a panel who haven't met the patient. You do really have to paint the picture as bad as it is with him having NO quality of life. On their first visit I was stupid enough to say mum ENJOYED things like listening to the tv when really we were putting on in the hope it would keep her awake and interested in things and they deemed it was enough quality of life. You really have to put all the negatives forward. Also when they do come and fill in the boxes, don't agree with everything they suggest; don't be afraid to steer them towards the less positive side on their 'diagnostic tool' as it all adds up to points. If you don't get enough points it will have to be redone a few months later. If that happens make sure you call them back sooner if he takes a down turn even if it is possibly an infection as they will see how unstable he is and record it. Any attacks on you -record them, be it verbal or physical. Give them as much as you can. If you can get the Parkinson's nurse on board she can vouch for what you say and will be classed as a witness to any struggles you are having. Ours made sure she came to the appointments with CHC to support us and made sure everything was mentioned.Good luck, Dianne xx


we have already had one assessment and only got the half and half whatever that might mean ...

the teAm told me they wer per going to try again straight away they believe we should be entitled . I old them I we should I wouldn't have applied in the first place . make him better for me and I won't bother anyone ,

I had the same thing with my mum who was in a nursing home for three years . not understanding the sister or anything about CHC I kept telling them she was better than she was , I didn't want her to be treated any different ,

the day she died the assessment Jose came to me and told me she had it . !!!!

I find it so difficult denying that John is as bad as he really is . I keep being postpitive with them . I suppose it's the way I cope . I am very hands I so they are not really aware . I have Carers three times a day and he I had been bed or chair bound for two years . he has par,kinsons dementia , hoisted at all times .

I try really had to keep a diary but am so busy deals g with him it's impossible and he fluctuates so much .hes not demanding but his symptons certainly are .

I told them he was unpredictable . I couldn't believe my ears when the CHC woman told me , that because I know he is unpredictable, he isn't !!!!!! hat on earth is all that about why put it in otherwise . so good luck everyone ..

will let you know the results when we get ours again ,


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