PSP Association
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Social worker

I was just wondering if I should accept this the social worker phoned me today to say she was closing George's file but I remember reading someone saying that you should not let anyone close your file, I said to her are you closing it, George has got PSP, she said if you have a problem you can ring us if your circumstances change you can ring us. Felt a bit worried, still waiting for other referrals, seems like it is taking ages. Also have organised a private pyso to come in while we wait, hospital said he should be having pyso, feel like I am hitting my head on a brick wall, don't want to be to pushie, and keep phoning everyone which I feel like doing.

Feel like screaming out to people my husband who has worked so hard in his life has got this horrible illness, feeling useless at the moment, thinking of all the jobs I need to do, and just here feeling sorry for George, he just sits in his armchair not talking hand clenched together not talking, he keeps looking at me with sad eyes.

We are off to Devon with our daughter and granddaughter on Sunday for a week so looking forward to it, I wanted to take him back to Cyprus to his village but he just does not want to go, I think he is such a proud man, he does not want anyone to see him, I have said we don't have to go up to the village, he still does not want to go. So hopefully we will have a lovely summer and we can spend some quality time in the garden.

Sorry to go on and on but I am still feeling empty, he has been getting this muzzie head which leaves him very quiet the next day.

Love to you all I love this page so look forward to reading what you are all saying.

Yvonne xxxxxxx

11 Replies

No she must not be allowed to close his file he has a progressive desease and they must be involved from here on in. If you can get hold of the community matron for your area she will make sure the sociol worker keeps his file open. Our matron visits with the sociol worker at least once a month. it might be an idea to phone the neuro-rehabilitation at your hospital and see if they can get the appointments rushed through. Janexx

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I agree with everything Jane has said - your community matron should be in contact and if you can't get her try the Parkinson's area nurse and don't be fobbed off .If you don't know where to ask then your doctor's surgery should have the phone numbers .

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Thank you make it my first job in the morning thank you x


Hi Yvonne,

NO NO NO!!!! Don't not let them discharge George! I found a new wonderful word the other day. STRESS!!! Keep talking about it, people listen to you, they stop what they are doing, it's brilliant!

I know it's so hard to be pushy, but you have to, for George's sake. Have you had a carers assessment for yourself? Telephone Crossroads, if not. The woman who came to see me, was very good. Getting me quite a few things, carers card, etc. Also, she referred me to Marie Curie, they are going to send me and S, a Marie Curie helper. Basically, they befriend you both, will provide a sitting service for a couple of hours once a week. Will take S out, if he wants to go. They try and pair you with someone who has the same interests as George! All this is free. Starts next week.

I would keep asking your Social worker questions, that they have to go away and find out the answer, anything to keep them on board! Keep stressing that this is a progressive disease, that could deteriorate at any moment, due to a fall. Tell her about the risk of constant falling. My soical worker has promised to keep S's file on his desk. Fingers crossed! Not holding my breath, but I know I have done my best. That's all you can do!!!

As to all the jobs that need doing - Mark in your diary, a day to do a certain task and stick to it! I did this for my bedroom this week. We are having our En-suite altered in a couple of weeks, so I have used it as an excuse to clear the wardrobes, something I have promised my self I would do one day, for the last couple of years! It really worked, now I have lovely tidy, clean wardrobes, with space to go out and shop, while S is at the hospice!!! This sounds easy, but it wasn't, been really down this week, lack of sleep! But because I had set aside the time, felt I had to do it!!!!

Little victories like this, do help with the emptiness and the lonely life we now live, caring for our loved ones with PSP.

Keep fighting!!!

Lots of love


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Thank you all never heard of the community matron, yes we have a lady from cross roads comes and sits with George on a Tuesday afternoon, will go to the doctors in the morning and get the phone numbers. I have also got a lady coming on Friday from Isabel hospice, luck I remembered what was said on this site, will phone up with my new word also stress thank you all I will let you know how I get on. Thank you xxxxx


It ain't over to you say it's over


I have just had a call from the OT people and she told me that she wanted to close my husbands case! I told her that I didn't want her to do that (after reading all the input about keeping cases open with all the medical people)and so before she does ,she said that she will come here do another assessment.she asked me what I needed and I told her I don't know....I was hoping she might tell me!



We'll have to tell you all about my phone call to not shut George's file from the social workers who I was not able to speak to spoke to reception people who deal with there phone calls George file has been shut, but they are saying he can be reassessed when needed, I phoned up three times spoke to one of the team who told me that she was not trained medically, I said I appreciate that, I am not asking you for medical advice, she said that the letter had been worded wrongly it says this is to confirm, as discussed that my involvement in I our current contact with us has now ended what does that mean then. When she rung me I told her that I was not happy, but she but on file that I was happy with it, what a nightmare.

When I spoke to the call centre again she said do you need anything I said things change from day to day my husband has a progressive illness, ever day is different, not sure what tomorrow will bring, saying all this was so stressful, used the work stress so many times but got me no where.

Waiting for phone calls back from Isobel hospice and the PSP had a good cry and just getting on with my day, trying to get George up he is complaining of a muzzy head and he does not want to get up, feel like having a glass of wine but I don't drink.

Yvonne xxxxxx







Thank you we are going with our daughter and two granddaughters on 13 the other 15 so will get a rest love to you also xxxxxx


I don't know how long a gap this thread started , Where do u all live . I know Shasha lives in France .

what is a community Matron . o have never heared of one .

th fist visit we had from a Social order was about two years ago and after six weeks was told that they had finished with us and if needed again we would have to start off at the bottom again !,

at the time they looked after is well . my husband is very far don this journey has been house chair or bed bound all this time . like you say the illness is progressive .

I Nov last year I reapplied for a further visit and told them it was urgent .I need more help from carers and some site . Now I don't really want any of it , I am fed up with all the differenteople coming in and out of the House . so far we have already had , wait for it . 112 different carers .!!!

I must say mostly very nice people .

n January I received a letter to say they were inundated but we were in the priority list lolly lol. I am still waiting . the parkinsons nurse along with the support worker also dang them for me .

we live in Wales , My husband is 81 I am 78 .

every step of the way. I have instigated every contact myself , It didn't come with a list of instructions or telephone Nos .

we should have one person to be able to contact that we know will care enough to open the doors we need .


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