PSP Association
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Hi all when we went to the hospital the doctor was insisting that George should get CHC , so we spoke to the district nurse again she came in and assessed him, and she he meet the criteria, so she said that we need a social worker, as some of you may remember they closed our file, in February, after insisting they didn't, I was told that if we needed a social worker again, it would not be a problem.

Well the district nurse has tried to sort it out, to be told we are waiting for a social worker to be allocated to us, that was four weeks ag, and we are still waiting, even after many phone calls, from the district nurse and myself.

Also told the by the admin officers that it is done by your needs, I said my husband is terminally Ill he is not going to get better, where are we then, after a 4 week wait? She could not answer and I know it is not her fault she was very polite. Told they were in a meeting then it would be lunch time so to ring after 2 o'clock. I rang back and spoke to

One of the managers she was very nice, I said to her, I think you should read up about PSP, she agreed, and told me where she worked before there was someone with PSP in the system, she said it was very rare, told her people did not know about it , so more reason to get the social workers to read about it, I told her to get in touch with the PSP society they had a lot of information.

She said she there was a meeting today and she would mention George as see where he was on the list, she also said it does not mean you will get the CHC I said I knew that already. Doctor at the hospital was so insistent that George should get it, so will involve him in this as well, he offered the help so I am going to take him up on it. For God sake our partners are terminally I'll.

Well sorry to go on a feel very strongly about all this , how can treat people like this social workers?

Love to you all

Yvonne xxxxxx

31 Replies

Oh the's never ending....where do you live ? what is CHC? US has medicaide medicaire social security, DHS and I think there is a seniors division that does difft stuff than soc. sec.

Well you keep on keeping on you will see the light....avb


Yvonne such a story makes me really annoyed, I take it you are in England not Wales. The issue is trying to get the local authority social services and District nurses to meet with you, the issue is both represent bodies who are more interested in not spending money and trying to pass the buck to the other leaving you in the middle. Here in Wales there does seem to be more of a care link between LGA and NHS. This is not so in England where it seems you are stuck in a kafka-esk maze.

I had never heard of CHC until last Oct when Margaret had a fall and badly broke her arm, NHS descending on us like a ton of bricks and imposed carers adaptations and CHC. The CHC was reassessed at 6 months and i am sure we would not have retained it if M had not had a spectacular choking session and arched back fall. We now have it for a year, review in March but told by GP should be a formality as M now PEG fed, Have you contacted your local MP, or councillors? I hope you and George can find a professional to help you soon. In meantime hugs, don't give up keep fighting. Best wishes Tim


Obviously, being terminally ill, is not good enough to get help!!!

At the moment, I really feel like pulling up the drawbridge, locking the door, telling everyone, exactly where to put their assessments and referrals and just wait.......

My sister is now on my case. She was trying to talk to a social worker today, was basically told, because S is self funding, I.e. He has more than £23,000 in assets , there is NO HELP! Not even if I pay for it! So where,oh where do I go??????

He has finished his Hospice course, so that's gone! Now all there is, is me and quite frankly, I am not enough.

Lots of love



Continuing health care is not means tested. At no time were we asked what money/assets we have. It was the hospice that suggested we ask for CHC. I had never heard of it until then. Is your husband on a break from the hospice, returning later? Ours does 12 weeks there and 12 weeks off before returning for another 12 weeks there. After his first 12 week break, C returned and at the end of his second term, we were told they wanted him to go every week as they knew he would change so much when he was away and they wanted to see the change. He has been going continually now for a year. Perhaps your hospice could advise you what to do next about claiming CHC.

You definitely need help and can't do this alone. It's good your sister is fighting for you. You have enough to do.

All the best.



Not really sure what is happening at the Hospice. S has been discharged into the care of their Community Nurse. She will come and visit or telephone us regularly. How regularly, I don't know! On her say so, he may be referred back to the day centre, for another 12 week course. This person, may be exactly what I looking for, but I am not holding my breath! They have finally arranged for me to see a counsellor, a woman is coming to the house next week. Not very satisfactory, but with no sitter, the only thing I can do. But it's a start, at least I will be able to argue for S to be back at the Hospice, if I can't talk to this woman with S around!

Lots of love



Perhaps you could ask the hospice this week if they can have him for the morning/afternoon when the counsellor is due. They may so no but wouldn't it be good if they say yes. I hope you get a chance to talk alone.

Sending you a big hug.



Hi Heady, have you had the delightful experience of having social services evaluate you for a sitter? Not means tested, we were allocated 3 hours a week, not much I know, had a problem with their suggested care company, so asked for direct payment, where the council pay me. Took some time to set up as they kept giving me the wrong info, in the end I had to set up a separate bank account for the money to go into, I was then able to choose the company I wanted for the sitting service (local hospice has separate company to do this). They send me invoices and I pay with the money from th council.

Hope that makes sense, might me worth looking into?


Who offers this three hours? I have been assessed by numerous people! Crossroads have given me £500 to join the local gym, but didn't give me anybody to sit. Didn't have any one!!! So have had to go down the social services road. After 3months and another load of assessments, I finally have a young woman, who comes for 4 hours and does my ironing at the same time! For the princely sum of £65 per session. I do get two hours from Marie Curie a week. Nobody has mentioned this free sitting! There's a surprise.

Lots of love



Social services organise but I get the money from the county council, sounds as if your lady that comes for 4 hours and does the ironing is the sitter meaning you can go out. We pay £49.50 for three hours. so it's not free As such but is paid for by the council. Do you get money from the Council to pay for the 4 hrs? If not chase social services.


Thanks! I think I will get my sister on this. Sounds far to complicated for me. But I suppose, they are relying on my attitude! We don't for much, do we? So why, oh why, is help so hard to find out about, much less achieved!!!

Lots of love



Hey heady, as mum has no assets she gets a personal health budget that pays for care. but I've personally hired PAs after some palaver but the going rate is £7.50 an hour !! Half what you are paying! I'd ask around and get more appropriately paid help. One lady I use is self employed and drives mum a few places occasionally so commands £10 an hour but even that I think is steep. Do you know anyone that works as a carer? Or can you put ad in local shop? It's a bloody hassle but once you've someone in place to help be better. Especially if hospice and cross roads not able to help ..!

1 like

Heady don't despair, you'll get there. As I have said before I am really glad we live here in Turkey in wonderful climate with excellent food and fresh air and we pay for every form of help apart from a few good friends here and others who come on holiday but help while they are here. Since I joined this site the state of the NHS and caring in UK has deteriorated and this is,for me, clearly reflected in posts here. In fact these posts should be analysed by some graduate student in Social Care as they would form great empirical data for dissertation. Don't give up,you will find help. I am sure others have written more practical replies than mine but I do feel for you.

Plodding on.



It helps if the hospital doctor puts forward his views. I don't think the way CHC is decided is very fair to the PSP sufferer. The final decision is made by a panel of professionals who don't know the patient , have never seen them and can only go by what is written down. It is really important that all the information is recorded on the forms. I do hope they soon get moving on this. If you hear they are going to start the process I suggest you google NHS continuing health care, guidance for professionals. I downloaded all the forms before the meeting so I knew exactly what they were looking for so when they asked the questions, I had the answers ready. All in my head though, I didn't tell them what I had done. I never lied, but didn't forget anything which I would have done if I had to answer without knowing the questions in advance.

I hope they don't keep you waiting too long before starting the process.

Best wishes



Heady that is what really bugs me is you work all your life to have a better life, no one asks for this horrible illness, and because you have more than £23,000 in assists, which is the same for us, you get no help, we could off spent our hard earned money, if we knew we would come to this point in our lives, it makes you so upset, we suffer with being carers, we work hard, to look after the person, we care for, and then you get a kick up the backside, and told to get on with it, what about the large amounts of taxes we paid, and still pay, what is that for?

Well the CHC is not means tested, but hard to get.

It is really unfair I have not got an answers to all of this, if we collapse and breakdown what happens to the ones we care for. They are allways saying you must look after yourself, if you are sick what will happen to George, if you are not well, we are tired hard working carers saving the government loads of money, what do we get nothing.

Sorry to go on and on ,but it seems really, unfair, yes we have some money, but what about us, when we are left alone, we will be penniless, which is unfair.

Tim thank you for your kind words, yes we are in England, the district nurse has been very good, let's see how long it takes to get a social worker, not giving up, we are looking after terminally sick people the government needs to see that, and give us the help we all deserve. I feel so frustrated that they are so ignorant to finding out about PSP there is no medication, just heartbreak and people that really don't care that we are suffering, unable to get the help we deserve.

To be told from the adm that they priorities there case load, where do terminally ill people come into it, we have waited over 4 weeks for a social worker, and none of them even now about PSP I bet, oh well another fight again if I don't hear anything by Thursday, district nure se going on holiday next week!!!!!!

Love to you all Yvonne xxxxxx


Thank you NannaB my daughter did that before the district nurse came, the lady I spoke to the manager from social services said that it could take a couple of months.

The doctor at the hospital said he would support us, so if need be will get him involved, feeling like I am banging my head on a brick wall.

Yvonne xxxxxxxx


I agree with all you say.

our care manager is as much use as a chocolate tea pot.

NEVER does what she says.

Also found out that there is another pot of nhs money called IPT. Individual patient treatment.

It is a part of CCG. Ask you doctor they will know about it.

Last week I said that I am not doing this anymore. There is no real support.

Thank god we have a good community nurse. She is heading up my wifes CHC application.

In our area Poole, Dorset we carers get a whole 30 hours of free sitting service. Slave labour I call it

What the hell have we been paying taxes and nhs for.

For a serious terminal condition the support is poor.

Would be interesting if we had a union.


Should have said 30 hrs per quarter.


George has a lovely lady from crossroads she comes in for 3 hours on a Tuesday, we don't have to pay, but if it is over three hours apparently we have to pay!

Funny system they have.

Yvonne xxxxxxxxx




Hi auddonz. In UK CHC is continuing Health Care funding. It is provided by NHS when it is determined that the patient requires nursing care as well as standard care. Usually given to people with terminal illness who are in need of nursing either in home or in a care facility. If it is provided there are no costs to patient's family. The next level of care is local Government provision which means you get care from local social services and means that as long as you have less than £23000 you will be charged no more than £50 a week for care. Problem is if you own your own home or have more than the limit you pay for everything. Not a fair system.


No, not fair at all. Have been on the phone trying again to get some help but so far no luck.


Everyone says they are going to help you, but when you ask for it nobody is there. The manager from social services has not been in touch, I feel like screaming from the rooftops, to all these so called professionals to educate themselves on this horrible illness, and then maybe we can get the help we so desperately need.

Carers are suffering we need them to listen, going to wait until Tuesday to see what happens, and if I don't hear anything, I will be fighting George's corner, never been really forceful, but that has changed.

Love Yvonne xxxxxxxxx


I am in th middle of having John assessed for CHC . that's after waiting six months six months to get a social worker . the Parkinsons nurse support officer and OT had also been in touch with them in our behalf .

We ,II've in Wales , already have carers three times a week . We started first by paying £50 weekly . It went up to £60 this year and apparently will be £70 next year .

I don't mind paying that , other loving in Dngland are paying a lot more . we should all be treated fairly and the same .

we started eventuall by seeing a female social worker . she then started the ball rolling by getting the district nursing sister to visit , and the Parkinsons nurse . all thought we should be entitled to it . . I Lao asked for sitters .

the Go arranged then for a mental health consultant to visit . It's all been pretty full on .

like you find it is very stressful

eventually had to have. Meeting with all those professional along with a lady from the CHC .

we are having. SALT test on Tuesday he has Ben measured around his arm , To guess his weight !!!!!!!

it look at least that we MIGHT !! Get four hours of sits . the district nurse rand me yesterday to say she was going to try and get four weeks respite in nursing home as and when I request this , I don't want to at present amd I never do need it .

my gripe is that I am not happy for John to have different sitters . He won't b happy so it won't help him or myself . I will dig my heels in .

I don't know what to expect , I hav been informed that the social worker who was allocated but it will b passed to another who has never met us . they will all meet independently .

I don't know ho makes all these rules up . I will keep in touch and let you know how we get in , I am not holding my breath. They have so far not asked anything about our finances .

o registered with Crossroads mainly because someone told me that in the event of me becoming ill or worse someone would stay it's John for to days .

we have had three hour sits . I usually only use two hours. .

john really needs someone to just sit with him in case he needs help with the drool . Offer a drink and make sure he is not too cold or too hot . . Shade him for too much light and leave him alone unless he asks . he can't keep up with idle chatter though always well intended .


Hi cabbagecottage we have waited 6 weeks for a social worker, not sure when he is going to visit, we are on our third different social worker, they come to assess our partners, they don't know anything about them, let alone this horrible PSP , then it goes to a panel, who have never seen the person, that is asking for the CHC , how wrong is that? I hope it won't be much longer to the social worker comes to see us, the district nurse, said it could take up to 2 months, but we have already waited over 6 weeks, so I am thinking it could take forever.

Our partners are terminally ill, we have so much pressure on us as careers, we are saving the government millions, with no credit whatsoever.

Oh well sweet dreams to you all Yvonne xxxxxxx


Cabbagcottage what is SALT test? X


Speech and Language Therapy is SALT, although I don't know which of the tests or what kind Cabbagecottage is referring to. My guy has had swallowing tests (barium and an X-ray to show how efficiently he swallows) twice and was given exercises that helped a lot with the choking, which is currently not bad. He is having another SALT evaluation meeting tomorrow, with a therapist who is coming to the house.


Yes thank you I read up about it, and George has already had one, just so many things going on, speach therapist coming next Tuesday, George tends to cough more and more lately, and his face goes bright red, and he has passed out, doctors at the hospital said she should come and see him, because this coughing could lead to something else. Yvonne xxxxxxxx


Sorry yes SALT is the swallow speech etc. Johns changes . he can often swallow but cannot control his tongue and mouth .


the lady who was very nice when she did the epassessment is arranging for a dietician to visit now .

I am still waiting the result of the assessments .. really not holding my breath and expecting much change .

the last telephone call they told me that the social worker who visited wo not be on the panel that decides they will all be independent people who we have never met .

What on earth is all that about , they make up these jobs and then wonder why the local councils run out of money for the people who are the most needy .


Cabbagecottage that is one of the things that really bug me, he can the assess someone (the panel) when they have not met the person? Just don't understand it, you are right that is the problem with the council, they do so many thing wrong.

We are waiting for social worker to do an assessment, let's see how much longer it takes him to make an appointment to visit, we need the help now!!!! Yvonne xxxxxx


George keeps saying that he feels like something is stuck in his throat, coughing a lot, speach therapist come on Tuesday xxxx


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