PSP Association
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As I said before George got CHC, which has been very good, for us and so much help.

Social services has just stopped the centre that George has been going to for over a year, it gives him something to get up for, well out of the blue, without informing us, the head of the centre rang me at said they had stopped it, without informing us, how callus is tha. The think I was paying for it, not them, so our couple of days rest bite for me and also for George and myself, have gone, I am know feeling like a prisoner in my own house, when do I get some me time? Feel like screaming, going to send a letter to head of social services, for God sake he is terminally ill who knows how much longer he will be able to go. So mad.

Also we had an estimate for a small ramp it is coming back at nearly 1700 pounds, it is a joke everything is so expensive.

Sorry to moan but I am so tired, Georges Cather was blocked yesterday so we had a very bad evening, thank god for the district nurses, hardly any sleep, waiting for doctors to come, and district nurses, George was so tired this morning, but I had things to do so carried on, my grandson was here today with me, so gave me a reason to not think about how tired I felt, it catching up with me watching X factor, going to go to bed soon. I also can't believe when I phoned out GP she asked me what I wanted her to do, I had to hold my temper, and when she rang back she told me to ring 111, long wait, going to phone up on Monday and ask for a phone call back from our doctor, going to complain. sending you all a big hug Yvonne xxxxxx

13 Replies

Omgoodness just when things are going better. So sorry this has happened to you both. Isn't there some volunteers in your area that can come stay while you get rest? I'm so lucky to have my family to come and help as needed. BIG SUPER {{{HUGS}}} TO YOU BOTH.



Oh no! Have they told you why they have stopped George going to the day centre, if not, ask them. Have you tried Crossroads? They are all over the UK and are life savers for me, sitting twice a week. I know in some areas a small fee is requested but others are free. The person who sorts our CHC suggested different respite options so yours may help. Here's hoping you have a good night's sleep and feel stronger to face things. Write down everything you want to say to the different professionals so by Monday you will feel confident enough to say what you want?

Sleep well and a big hug for you as well.



Hi NannaB .the lady who used to come from crossroads to sit for one afternoon was an angel. However, there wasn't a "small fee" : £ 15 per hour. It seems the cost differes widely.


Phew! Definitely not a small fee.



i agree £15 si a large fee (tax-free?)


I DIDNT GET ANY HELP FM THE CHC PEOPLE IN FA CT I HAVENEVER HAD A LETTER CONFIRMIGN I HAVE GOT TI BUT THE £ goe sineto the account each month which is what matters i guess¡

lol ji Il


If you have CHC you should be getting help, carers etc. if money is going into your account, are you getting PIP instead, where you find your own help and pay them directly?

You need help Jill. Get someone to enquire for you.



That's awful. Can't believe how autocratic they can be.

C goes to a local hospice which is nothing to do with social services. Do you have one near ?

S. S. should also have details of a sitting service. You need to get out or you'll go mad !!

Big hug, love, Jean x


Social services are saying because CHC is NHS they cease to work with us, the centre is run through social services. We had crossroads, but our sitter left, and they are short of sitters in our area. District nurse has been wonderful, she is looking in to other options for us. Will also see what CHC come up with, just need a bit of time for myself, I feel like my head is going to explode.

Also getting my letter ready for head if social services, more than likely won't do any good.

Had a good night sleep last night, but my head is still banging, Son coming for dinner today, and granddaughters, and his partner, so something to look forward to.

Love to you all Yvonne xxxxxx


It feels as if they are more concerned with their little wars than the needs of the carers, whatever they say.

No hospice ?

Love , Jean x


Get your district nurse or GP to refer you to Marie Curie. They offer a two hour Be-friending service. Someone will come and sit with George for a couple of hours a week. They try and match the person, so they have something in common. This is a free service, it's not long, but you can get to the Optican, like I had to spend my time this afternoon!

Lots of love



i must ocntac the Marie c nurses

they seem excelllent


Hi Yvonne, it is one of the demarcation disputes that really gets through. We lost a very good local authority OT when CHC granted. Never had day centre care but can see it would be great to have and very cruel to remove the facility when G is used to it. Social and health care are supposed to be linked in Wales and there does seem to be more coordination than England but the funding is still split so petty disputes wreck their good intentions.

Crossroads or as it is now Carers Trust are very good but limited in what they can do but brilliant for regular short breaks. Do you have Marie Curie Nurses if not get District Nurse to contact them for you, besides night sitting they do occaisional full day 10 to 4 care which is great. Our local hospice had to stop M's day centre visits as they were a volunteer run group so we now go to a nurse led hospice day unit but they are strict on rotations 8 wks on 8 wks off so difficult to get into routine. I have tried our local stroke group and Parkinson groups who run day meetings, M enjoyed them and they gave me opportunity to meet with other carers but I could not leave M except for very short (30 min) intervals as no cover. But the PEG and loss of speech has stopped M going except for short visits.

Best wishes Tim


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