PSP Association
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Continuing Care

Hi Everyone,

Have read all your blogs about the problems getting continuing care. I have been trying on behalf of my sister. Our meeting when a decision was to be made as to her eligibility early September was cancelled. Since then silence, until I phoned this week to find out what was happening. Now we have a meeting on Monday, is it for more form filling in or what, yet more delaying tactics. Why or why should we have to fight for what is our loved ones right and need when we all know and have to live with this the final outcome. More information and knowledge has to be put out into the public domain about this disease and others of a similar type to Social Workers because they hold the key to unlocking the continuing care chest.

Sorry for having a "rant" but you all know what it is like. It is the admin side of this disease that takes all your energies never mind the care side .

Best of luck to everyone


11 Replies

hi maeve

i am so sorry you are having so man y probs wiht gettign the CC

I agree - the admin sid eis impossible - i have been signe doff by myh socia ;l worker as being "stable"

i may be a thte moment (I htinks i have teh slow sort of PSP)but i think resourcs r so stretched htat you really hav eot push and push

and get yoru sister's consultant and gp on hyou rside too

lol jill

and try to have a smile :-)

HUGS and xxxxx


Good Luck for Monday hope it goes your way. My mum has just been diagnosed and is 81 years old and lives alone at home having carers 3 times a day to assist her. She has been treated for Parkinsons for some years now but this is all new to me!! Looks like I might have a bit of a job keeping her at home does anyone know if this is possible? Good luck to you all and keep the fighting spirit going. Any adivce will be appreicated.


Hi there, I was able to keep mum (76) at her sheltered housing for a year before she was diagnosed but by then she was fully middle stage and was too much as risk from falling when left even for a few minutes. It was so upsetting to see her covered in cuts and bruises from her attempts to stay independent but she knew this was not working by then. We had 15 paramedic attendances between January and February.WIth a heavy heart I put her into care but the place she is in is marvellous and has a nursing floor as well. This was deliberate as I knew by then the prognosis and sure enough after a severe infection she needed to go to the nursing floor. Mum is safer and happier now as she can have what she needs when she needs it and still has a quality of life that was lost when she had to wait for people to call at fixed times.I would love to have been able to have her at home but I would have lost my income and I know I would not have been able to manage her entirely on my own.Coupled with this we were losing our daughter mother relationship and mum didnt want that to happen. If you do decide to go it alone make sure you have all the help you can get first. Good luck


Thanks for your advice I am so pleased that your mum is happy and safe. My mum is adamant that she will not go into a nursing home!! I am not sure she realises what is happening as she has been dealing with what we thought or what could still be Parkinsons for some time now. Her consultant is now on leave for a week so can not get any further answers till next week.

Thanks again and good luck to you and your mum.


Dear daughter No1, I was in the exact same situation as you and my mum - aged 71 also went into a nursing home in August and has settled well, being well cared for. It is a horrible transition and very heartbreaking, but it comes to the point where neither of you can cope. Mum was awarded continuing care earlier on the year and so I am SO grateful that the care home fees are covered as it seems a miracle to be able to get CHC, I am so thankful to our district nurses who fought for it for us.

I just read of all of you here fighting for it and feel sad that there is no justice - why some get it and others do not. Please do not give up fighting for it.

love Clara


Very best wishes for Monday. You are right, getting help and support is a bureaucratic nightmare but we have to give the bureaucracy their own nightmare by questioning and fighting for our love one's rights. We are all with you on this.


Good luck on Monday. Let's know how you get on.

Take care



Hi Maeve

Good luck today - we had Mum's assessment last week and it was a very traumatic experience for her and us. They agreed verbally to grant it and will confirm it in writting - Mum has no mobility and is not able to talk - and has issues with swallowing which I am sure you are all familiar with. She is however, able to understand what is said so 2 hours of 5 people (3 social and health workers) talking about her in her home was very unpleasant and she refused fluid and food after the meeting - I had to rush back to work and in the evening I sat with her (and my children!) whilst dad was in the kitchen and said how I understood how horrid it was for her and how to listen to us talk about her must have been difficult but it meant I could 'nag' Dad into geting more carers in as it wasn't their money anymore - she drank a whole pint after this and had porridge so hopefully this calmed her down.

Please take it easy on yourself it is so hard to cope - I found the key to unlocking help was the Parkinsons nurse from the nuerological team at the local hospital (Eastbourne) and help from the local Hospice - it has taken a long time in the wilderness to unlock the help but finally it seems to be comming our way.

They also helped with Mum's end of life care planning - Jan at the PSP org has been a brilliant listener when things have been tough and helped with arranging the appointments so your area PSP Nurse Specialist may be able to help you

Wishing you loads of luck and a virtual great big hug



So pleased you have got the care you need coming your way Sarah - also know how it is feels like to be in that wilderness. Seems we all have to remain in the wilderness a long while before someone notices and we get taken to the oasis. Much love, Clara xx


Thank you Clara - it does seem so awful that we all seem to go through this period of helplessness! Glad you found some help in the end too!



Great news. You give us hope but how unfair that we have to fight for these things when we need all our energies to care.

I hope you mum continues to eat and drink well. She is very lucky to have you.

Take care



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