I have just signed up to this and it looks excellent! Myself and my family are wondering whether anyone knows of a nursing home that is around the Herts/Essex/Cambs border sort of area that they have found to be good for people with mid to late stage PSP. We are really struggling to find somewhere that will a) take Dad and b) give suitable and high quality care. Dad falls a lot and is impulsive. The home that he has been in for respite care cannot seem to cope and have been disappointing with their level of care and two others are not willing to accept him due to the risk of falls even though they specialise in Parkinson's. Any advice would be very gratefully received. Thanks
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Ali-M
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Hi you need a nursing home as your dad needs more than just residential care. Unless he has dementia avoid EMI (elderly mental infirm) homes. Your local council social services will have a list of approved nursing homes ask them. If you have a local hospice ask them, if he goes into hospital ask their palliative care octal working team. Start applying for CHC for him as should cover the costs. Sorry such a list but you have to do the work of hunting the homes as social services will only give a list.
There is a superb Nursing Home in St Albans - Verulum House. We visited it yesterday to look, but have not used it yet. However we saw the food and other residents and it ticked all of the boxes... Fairly fit residents, not all very very frail, food looked very good and it was freshly cooked on site. They have experience with PSP and the staff are trained by the (superb) local hospice in end of life care.
Be sure to check that any you see are indeed Nursing Homes - Care Homes do not have the staffing to cope.
A good way to go is to telephone prospective places first. Check staffing ratios - look for 1:3 or better patient to staff. Ask about the sort mof people they have. One place we looked at sounded great excepting their resident were all mid to late eighties and my wife is 58.
Next have a look at the Care Quality Commission Inspection report:
Lastly ask to visit and look around. Jut before lunch is a good time to go. That way you get to see how well they cope at a busy time of day.
Lastly Cont. Health Care £ tends to ceiling at around £800.00 per week. It is entirely possible to go somewhere more expensive and top up the CHC monies. Some places say that their fees are say £1500.00 but talk nicely and you might find they have an odd smaller room for CHC funded people (we did
Well these are my thoughts. I hope some of them are helpful.
Hi just wondering if there are a lot diagnosed with PSP in the UK? They are saying here in the US that there are 48 hundred diagnosed with PSP, could be more as they are wrongly diagnosed, the eyes are the tale sign, terrible disease as we all know. Nettie
PSP Assoc. says about 4,000 in the UK at any one time. However there is a suspicion that there are many who might have diagnosis such as atypical Parkinsons and Dementia.
Thanks Kevin, this disease is so weird never heard of it before my brother was diagnosed, he was diagnosed 2 years ago with prior problems I noticed 4 years, of course he has really gone down hill since then, it's like he will go along for awhile then it wil really progress for about 3 Weeks then there is a whole new bunch of things going on and it will continue, taking a day at a time.. Take care. Nettie
Thank you so much for your replies which are really useful. My mum was caring for Dad at home but has suddenly become unwell herself and so this change of situation has all come about more quickly than we were expecting. A steep, stressful and very emotional learning curve. Thanks for the help.
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