PSP Association

Mum has PSP and is stuck in hospital, what options do I have, regarding hospice and care homes? Her needs are too high for all care homes!

Hi, my mum has very advanced PSP and has been in hospital for over 4 months and has nowhere to go now. There is no reason for her to be there. She went in for a two week 'assessment' and has been stuck there ever since. Her needs are too high for all the care homes we have tried, but she has been turned down (dishonest assessor) for continuing care. They are dosing her with tranquillizers as she is very anxious and just tries to go home several times a day. They have a deprivation of liberty order for her and physically prevent her from leaving, which she cries about. She has declined very rapidly in the hospital as she is very unhappy being imprisoned there.

5 Replies

Dear She-is

First of all, are you in the UK? Second, who's mother is it anyway, answer your mother, so do not let them bully her or you.

Demand to talk to the Chief Administrator at the hospital, if this fails, speak to your local MP or better still, your local councillor on the Health Care panel of whatever it is called.

Your mother is the priority here, try and take charge and tell THEM what is needed, they in the end work for us and get paid by us, the tax payers.

I hope it works out for you and keep on the site for further and, probably, more practical advice, I am known to be emotional occasionally. Sorry but after nearly 8 years of caring I am up to my ears in All the people around us and not really helping us on the way WE need.

Kind regards

Dorothy t


Dear She-Is,

I gather you are in the UK? and the deprivation of liberty order is part of the mental health act (2005). I'd be contacting the Alzheimer's Association as well as PSP Association to find out where you are to go to and how to address your mothers extremely difficult situation. And yes - like Dorothy suggests - contact the highest authorities to explain the circumstances and ask them who you should be be speaking to and why and asking what possible outcome do they envisage is achievable. As four months in hospital for anyone - makes no sense at all.


Alana - Western Australia


Hi, this battle of yours sounds awful, as if you haven't got enough to contend with! The only thing you can do is fight, and fight hard, dirty if you have too! Your mother should not be stuck in hospital, who are they to say she can't leave !

Like Dorothy says, remember YOU are employing these people, YOU are paying their wages, so that means YOU have the right to say what should be happening. It's about time our wonderful NHS (I am presuming you are in the uk) staff, realised actually, who their bosses are! If you are else where, even more important that you remember who's paying the bills!

Try to divide your time carefully, between fighting the authorities and looking after your Mum. She is the most important person in this, and it would be awful if, by trying to get the best for her, you lose some precious time you have left with her.

Hope it goes well, my thoughts are with you.

Lots of love



Dear She-is -

Who suggested your mother went in for "assessment"?

Rather than care homes, perhaps you could be looking for a hospice? I know they are like gold dust, but after four months something better IS out there, waiting to be found. So, carry on the battle.

Whoever suggested the "assessment" should be monitoring the result for you. Obviously not doing their job - keep pegging away, and I agree with Dorothy t about not being bullied. It is difficult when you are tired and frustrated but take a deep breath, clear your head and go for it. Look for the chink in the wall you are banging your head against!

Thinking of you,



Dear She-Is,

What a terrible situation! My heart 'bleeds' for you. My father too was put under a deprivation order and quite honestly, I do not know what you can do because all the agencies 'gang up' together and as none of them actually know anything about the disease, you cannot reason with them. They have the 'power' to do anything they like and maybe the only way is to seek legal advice. Yes, approach the Alzheimer's and PSP people and what about your mother's G.P. ? You may be lucky there, I was not, he was yet another idiot!. I could not get a hospice to take him and he died there in hospital, alone and without me. I am now struggling to come to terms with it all. I just do not know the answer, I fought and struggled for years to get some sensible care for him without success I tried every avenue I could think of but failed.


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