In the UK I understand that there are no care homes specialising in treating people with PG. Why?

I understand from research done when looking for a care home for my cousin that there are no homes specialising in caring for people with PD. She was placed in a very nice home with kind staff and well looked after. However, due to low staffing ratio she did not receive the stimulation and exercise she needed.

I understand that this was not the fault of the staff who were extremely busy, but she needed conversation and help walking with her walking aid. Physio, on a daily basis, and speech aids would have been a help.

As so many people suffer from PD surely there should be care homes available specialising in this disease. I suppose it all comes down to the question of funding. I appreciate that not all people with PD need residential care, but we all need help in one way or another on a daily basis.

Sorry, this is one of my deeper questions but it is one I can't find an answer to.

14 Replies

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  • SORRY FOR TYPING ERROR SHOULD SAY PD. Tablets are wearing off.

  • and hepful error. "should say PD"...tabletws are wearing off.

    sorry you are at that sstage now. I AM TOO AND I WONDERED IF

    ANYONE ELSE HAD THE SAME and i saw your post just now.

    I am at bottom riht now. dyskinesia bad!!!! pain!!! shakes!!! legs weak!! hrrdly talk.

    YOu and I must be ata the same point in the cycle of PD for the day/night. Dennis *sorry for errors but i know you undersandt

  • So sorry that you appear so unwell. Although, I am not at this stage myself, I have first hand experience of how debilitating it is having seen my cousin there.

    She found the hardest thing was the inability to communicate and her family made her a card with useful words and phrases on it.

    I raised the subject of care homes because of her experience. Please keep in touch and do not worry about typing errors we all understand and are here for you whenever you need us.

    Sue

  • GOOD QUESTION!

    i´m not from UK. But i realized that we don´t either have carehomes for people with PD in Finland as far as I know. I have heard many stories how they don´t know much about PD in hospitals and carehomes and people haven´t got the treatment they needed. And i have been concerned about my future. This would be the answer! It would even be progress if there were carehomes specialized for neurological diseaces as general. So the speciality of these diseaces would be considered.

    We should try to affect this somehow. .

    Odette

  • Are there special care homes anywhere for PD? I'd never thought of that.

  • I don't know the answer to that. This question only came up when we were trying to find a care home that could cater for the special needs of a relative.

    People with PD and other neurological problems are not catered for in nursing homes which usually are geared more for elderly patients. They do not have the time, or in some cases, the expertise to cater for PD patients, some of whom benefit from exercise and mental stimulation. This is in no way a criticism just a personal view.

  • Court

    There are some specialist neurological care services in UK

    eg shelleypark.co.uk/

    foresthc.com/Care-Type-Cate...

    I do not know how wide spread they are.

  • I knew that one specialised care home existed but was given to understand that this had closed. We made extensive enquiries at the time and were not able to find a suitable home.

    I may be wrong. I hope I am.

  • Here on this side of the pond, I do not thing we have any either. Curious thing is that there are numerous places that specialize in Alzheimers and/or general dementia.

    Hmmm,

    Steve (Bisbee, AZ)

  • Parkinson's UK has a team of educators which is dedicated to going into care homes and hospitals and training staff on the best ways to engage and help people with Parkinson's. You might get some help if you phone their help line and ask about facilities in your region. The local branch might have some knowledge about best practice in your area too.

    0808 800 0303 is the helpline number.

  • I am also struggling to find a nursing home for my mum who has been recently diagnosed with PSP. We have tried to care for her at home but she has severe depression and behaviour issues which seem to be worse at home. At the moment she is in mental health assessment ward in hospital until we can find her somewhere that can care for her as well as stimulate her. Any suggestions would be greatly appreciated. We live in Staffordshire.

  • Have you tried the links above on specialist neurocare, posted 2years ago but still work. They may be able to tell you of any services in your area.

  • Dear Poppy 1971, I don't know what to advise. As far as I can see nursing homes have not an iota of understanding about the disease, almost as if in denial that the disease exists even. I am having awful problems with getting appropriate care in the nursing home setting and I am afraid you are going to face nothing but sheer heart ache at the care provided. The problem is, I think, that although we in England have what we call nursing homes there is very little actual nursing done as it is the carers who do most of the looking after. The actual nursing element which is implied in the title refers in fact to only the single qualified person on that wing who is appropriately trained and she/he spends their time either writing up notes, ie pen pushing or pushing round the drug trolley when the time is right. I hope you have better luck than us. I wish my father would die soon as I just cannot bear what is happening to him. I am in total despair as I watch his treatment by carers and see his suffering, I feel as though I am living in hell. I just am getting so little sense from medics and carers, just one hell of a nightmare.

  • I believe most care homes are run on a For Profit Principle nowadays. Even the very best of them never seem to take into account the fact that people need both regular mental and physical stimulation. The staff are usually employed on a care basis and if any staff have the abilities to be able to stimulate the clients, the staff to client ratio usually means clients only get the basic care. Most of the time they are sat waiting for the next meal, or a kindly word from a visitor or passing member of staff. Any recreation that is usually available is often of a meagre kind.

    I have known many people in residential care who become more isolated, lonely, and confused even though surrounded by many other people. When people enter a care home they suddenly realise they are living in a community with a lot of strangers. We would not normally live at home like this. Many can cope with it, but most cannot. It is a completely different way of life. One that most of us are not prepared for.

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