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PSP Association
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Hospice registration

Can you register for an hospice before its needed so my Pete can get used to it. He has been diagnosed with psp for about 3 years. I do not want him to be scared if he has to go in for a few days for restbite for me. Do I go to his doctor first,don't know what to do.

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Hi Polona

In the U.K... absolutely.

But it is a postcode lottery...

So worthwhile doing.

The big fear is the unknown... dying in a strange place which might be a horrid place.

We were referred to a hospice very early on... the lead nurse did an end of life plan over two sessions and answered many questions. We were shown the rooms and the food, very nice fresh cooked stuff... (some from their gardens)... and Liz went weekly for physio after that for a year... all to allow her to become familiar... I got counselling for a while too... (that was weird, but I took it up, I was more trained than the counsellor who was OK... and it helped me adjust to the drip drip loss of PSP)... So when I need that in the future, which I will, its there for me.

We both feel very comfortable with the people there and the place... no longer an unknown or a big fear.

Well that worked for us.

If you think it would work for you ask for a referral.

Suggestion: Check out the Hospices near you first... if you mare in the U.K. read the CQC inspection reports... ring them up and ask to visit... then go back to your care co-ordinator or G.P and ask for a referral to the one you like the most... there were three near us.

Hoping this helps.

I'm sorry to hear that you are both on this journey... wishing you both the very best.

Warmly

Kevin

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Thank you that is very helpful xx

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As Kevin said, absolutely. My hubby has been going to the day centre at the Hospuce once a week for over 2 years. He was walking and talking when he first went. Not now! Today the patting dog was there, C had his finger nails filed and hands massaged, listened to the beautiful voice of the music therapist and sat in the garden holding a volunteers hand. He also attended the religious session (not compulsory). As Kevin said, there is access to a counsellor but I haven't used that service yet, and I am entitled to have massages and therapies as well. I asked our GP to refer C and his first session was exactly a week after visiting the GP. I get 5 hours every Friday to do what I want....bliss.

I hope you soon find one near you.

X

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Oh that sounds wonderful I will have to look into it and go to the gp and see what I can do thank you nannab x

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I rang the local hospice directly and they came and assessed him at home and bingo dad was a patient!

Dad went for music therapy weekly and loved it! Mum or I always accompanied. The staff are amazing and made us all vert welcome!

I've had and am having counselling there and a counsellor comes out to see mum n dad

We haven't done respite although we should

I can't recommend them enough

They've helped us through the most difficult times and I'm sure will continue too

Please contact your local hospice and see what they say

What's to lose?! X

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Ooh sorry just remembered GP did referal to get dad in x

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Thank you xx

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I will see our gp xx

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I will look into it thank you xx

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Hi, if you live in the UK, then get in touch with your GP first thing Monday morning to be referred. They are there to help people LIVE with life limiting diseases. End of life care, is a very small part of their remit. So yes, he needs their help now. Later, will be far to late!

Lots of love

Heady

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We were referred by the neurological team. Chris has gone to the day centre for nearly two years. He went in for a week respite in May and will again in November. He loves it there. Everyone is so happy and caring.

Love, Jean x

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Hi polonia

I went to hospice myself. Very nice people and place. Explained about my husband, PSP, and they said their day care sounded right for him so ask GP for referral which i did, she agreed and we've been referred. Just waiting to hear back now. St lukes hospice in harrow. The other thing was respite for me, on the day, and if longer needed, then he would know them and the place so he would not feel like he was with strangers. This doctor also ordered a ramp, home speech therapist visit, DXA bone scan because of falls and OTs to see if we needed anything else. We havent had a complete care plan done yet but all in good time. Good luck to you and yours. Take care and god bless.

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Yes definitely. My husband has been going to the hospice day centre for about 18 months. He enjoyed the social interaction for the first year and joined in with some of the activities. He can't do that now but still enjoys going. The staff are all very nice to him and have become friends. He enjoys being taken in the garden when the weather is nice and although he is unable to participate or communicate well now, I think he enjoys just hearing the chatter and general activity.

The day service is set up for people living with a terminal illness and their families so definitely NOT just end of life care. I contacted them myself in the first instance. Someone from the hospice came to our home to meet D and they got the necessary referral from the GP. He was able to start immediately.

Vicki

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Can anyone tell me how much the hospice charges are for daycare and respite, I realise different areas of the U.K. Will vary, but just a rough guide, as I am trying to book my husband in for a few days respite, just to get him used to the idea, and it is proving difficult, with his care needs, like it is too much effort just for a few days, or not financially viable for them 😁

Thanks jd

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Our local hospice (Kirklees) doesn't charge anything for attending daily sessions - but do welcome donations. If you check your local website for hospice in your area everything should be on there. I am not 100% certain but I think all their services are free which is why they have such a need to fundraise. Regarding respite in a care home your local authority come out and perform a financial assessment as to how much you will have to pay. However when we had our assessment done we ended up only paying half of what his nursing fees are so I think that they are more generous with the rules of respite payment. Your social worker can arrange all this for you. Hope this helps. Take care, Pauline xx

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Thank you for that, I'm sure it's a great help, the support alone is a welcome , like this site which is brilliant, whereabouts in Kirklees are you, I went to school in Mirfield, but now live in East Grinstead ( near Gatwick airport)

I am finding that the care homes for respite are limited because of Ian's medical needs, so still looking to try and get a few days in Sept, maybe my social worker can help with the hospice, as our neurologist said he would write to our GP

Take care. Janet x

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My husband who passed last September was prescribed Hospice by him nueromuscular Doctor in February. We had home hospice and it was wonderful. They came and bathed him 3 times a week, and he had visitors, and a weekly nurse visit. He died a peaceful man in my arms.

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Hospice service is variable around the country, but it has been a wonderful support for us. GP referred on my request and I dragged my then walking husband there 12 months ago he very reluctantly agreed to attend onepce per week, now goes twice occasionally three days per week does art and music therapy, has counselling uses the gym and has a bunch of friends. The most positive of any treatment he has received. Would go to your GP and ask for referral you will both benefit.

Xxx

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Thank you x

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In the USA, I got a prescription from his doctor. My husband had home hospice, and that gave me the opportunity to have respite one week every six. I never used the respite, my choice, he was just moving downward so fast. They were such a blessing, ha had weekly nurse checkup and every other day baths with his own aide. And visitors and social workers and a pastor.

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Was the aide you had also with hospice or private may I ask?

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