PSP Association
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continuing care

Hi everyone,

I had a Christmas present arrive on Christmas Eve. Guess what! A letter from our local PCT with the news that my sister did not qualify for C and C. Not only was the decision late in coming because I was promised we would have an answer 7/10 days after the interview which was back in late October but the answer was "NO". Sorry for the sarcasm . It really gets me.

My sister condition has worsened as it does with the advanced stages of this disease. Why, cannot anyone listen to what you are saying . I now have to make the decision, do we apply again, for it to take months waiting for an answer or give up. I can understand why people do give up. Have I got the energy for all this paperwork and hassle?

I am giving it some thought and will read through the criteria again, down a large drink, grit my teeth and start all over again. Do they give medals for perseverance?

Happy New Year


12 Replies

Our assessment is on Thursday!!! wont be holding my breath and "YES" you certainly deserve a medal for perseverance. I am hoping i will be able to get through until the assessment I feel as though I am on trial and have to watch each answer so carefully.

"Happy New Year Maeve x


Oh Maeve, I'm SO sorry you got turned down for this :-( It makes me so mad that we have to fight for every thing to get any help. Especially when we all know that there are people out there claiming benefits they are not entitled to :-(

Don't give up!! Have you tried involving your MP?

Keep strong and fight on!!


Kathy xxx



This is not good news Maeve, I am sorry that your initial efforts have been unsuccessful, but I think you should contest the decision. Lets face it, if some overweight people can get a gastric band fitted on the NHS for a problem that is usually self-inflicted, then all people with PSP or CBD should have the support they require and deserve from the NHS!

Having said that,I agree, it is an exhausting and thankless task just trying to get any real support from the so called shakers and movers of our society. Each time I have made tentative enquiries of my gp and or the social services re CC, they either pretend ignorance of the whole procedure or steer me in the direction of "more help" in the home. So I would be interested to know who your first point of contact was with. I recently went on the Saga website and one of the things it said was that there is something called NHS funding towards costs if a person has to go into a nursing home, is this one and the same thing?

As Kathy says, don't give up. Have you thought of contacting your local councillor as well as your mp? My brother was a councillor for years and he always said that any councillor worth his or her salt is just itching to get their hands on a "good campaign" as opposed to litter and street lights - important as they are - and may be persuaded to take up the "cudgels" on your behalf.

Nil desparendum Maeve and fly the flag for all of us and may I ask, how old is your siste?

much love



Hi Dorothy,

No, it is not one and the same thing. What Saga was talking about was NHS funded nursing care which is about £108 p.w. Continuing Care is where the whole of my sister's nursing home fees will be paid by the NHS. That is why it is so tough to get it. Our first port of call was a hospital social worker who told me about it when my sister had her PEG fitted. She told me it would be difficult to get BOY! was she right.

My sister is 63 yrs old.

To you all out there I have got the bit between my teeth and I am now appealing against the decision with backing from the Matron of my sister's nursing home

We all know cases where there are self inflicted conditions being treated expensively on the NHS!!. Better get off my soap box




so sorry u have been turned down!

plz do not give up yet

as the others say your mp or councillor should take thsi on board

lol JIll


Hi Maeve

So sorry that your PCT decided your sister was not eligible for CHC but please dont give up.

Your PCT must supply you with the rationale and reasons and that led to their decision and I would suggest that if you havent already been given this in writing that you immediately request it, along with a copy of the NHS assessment that was submitted to the Panel.

PCT's and the NHS CHC teams are experts at not responding to phone calls, delaying tactics and your case I'm afraid is the norm.

In all it took us 2 years from our 1st rejection before my wife was awarded CHC and even then we would have failed if it was not for the superb support we got from the Matron of the Nursing Home, my wife is in.

Keep fighting -- when you appeal it is vital that you, and the Matron, stress the complexity, unpredictability and intensity/ frequency etc of the many problems that your sister has and any behavioural problems.

Good luck


It makes me so sad reading all your comments, I did find that a charity 'Carers Resource 'were extremely helpful in assisting in filling in forms also my sister found Age Concern helped her with filling in forms for Attendance Allowance

My husband, who had PSP was admitted to hospital with pneumonia, whilst he was in hospital I was told by a member of the nursing staff that my husband would quality for CC and an application was being made on his behalf, which really surprised me. Sadly although initially he recovered from the Pneumonia he died a few weeks later,

My husband visited the local hospice for one day a week during the last 6 months of his illness, he looked forward to his visits, not only the company but the extra care he received, ie massage therapy etc there was always a lovely atmosphere with lots of laughing, but most importantly the staff have the knowledge to act on your behalf when applying for benefits or extra care, I am still in touch with some of the staff who continue to support me if and when I need someone to talk to.

my thoughts are with you all


Dear Maeve,

Please don't give up, don't apply again, just challenge the decision. I think Riosenior has the right idea. I know from personal experience the lack of response and delaying tactics, to phone calls, emails, & letters. We are still awaiting a decision from an assessment on 31st August and in the meantime, my lovely partner Derek is just disappearing before our eyes in advanced stages. I am gearing myself up for rejection but thinking about the next move!

Keep at it, I know it's a pain!



Sorry to hear about your rejection. Mum was rejected a few weeks ago but the paper work had been completed long before we got it. However mum took a massive dive in health last week due to an infection . She lost her mobility totally including in her mouth and at first I thought this is it. After 3 days she was not improving much and was showing no readable signs of infection and I emailed CHC and asked them for fast track, explaining the situation. Since I emailed them it has transpired that mum did have a UTI after all and she is responding albeit incredibly slowly to the antibiotics. Amazingly the boss at CHC came to work this morning after the New Year break and rang me immediately asking to see mum today! She agreed mum has markedly deteriorated since the last report but needs more evidence to say mum is moving faster towards the end. The GP surgery is relatively new to mum and a partner that came out today to see mum in relation to a seized hip knows absolutely nothing about PSP and kept asking if she had had a stroke! So he wasn't able to help at all so the CHC lady has gone to see what she can do. She said it is likely that another person will come out in 2 weeks time and complete another diagnostic tool and then we wait AGAIN. Anyway my point is that at least they responded to the urgency so you may find that reassuring should things suddenly get worse in the meantime. They have also promised that if mum should begin to get worse even quicker they will come out immediately.

Good luck with yours and I will let you know if we ever get ours.

Dianne x


The CHC have been back in touch and arranged to come in and start the portal. Because they do not understand the disease or its complexities and because the paperwork is tooo rigid for PSP and complex diseases ,what they are needing is written evidence that the PSP is now progressing faster than before. Having changed GP when mum went into the nursng home they hardly know her personally. However the Parkinsons nurse has seen mum regulalry over the last 2 years and is able to give written opinion and she does report back to the Neurologist so it looks like we may have the proof needed. I emailed all the professionals involved including SALT and it seems to have brought some light into the tunnel. We can but hope, but now I am thinking that it's not such a good sign that mum might qualify as it actually means that everyone thinks the end is quickly getting nearer. So what rings through my head at the moment is 'be careful what you wish for'


Hi maeve,realy sorry to hear you have been turned down for cc,and i totally understand why you feel so angry it does make you feel like giving up as they make it so hard for you,and to turn you down is just an insult.Were is your sister living?i really hope you do have the strenght to see it through as your sister is going to need this care.My mom is in a nursing home and is having 24hr continuing care and as been lucky enough never to be turned down thank god as i dont no what we would do.this disease is hard enough to cope with without having to worry about the financial side i wish you all the very best and please dont give up regards wendy.were do you live maeve im in birmingham englandx


Hi maeve,

So sorry your sister has been turned down for CC, we asked for an assessment for my mum who has CBD, before christmas, social worker and pracrice nurse came out and did initial assessment, still haven't heard if it got through triage? Gonna start chasing. It is silly that our loved ones all have to be practically on death's door or a very sudden deterioration before you get anywhere. We were told Mum was borderline so our expectations are very low at this time. Keep plugging away and your perseverance will hopefully pay off. Sending you and your sister very best wishes.



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