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PSP Association
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Plan B

My friends, I need some advice. Last night I had a very panicked phone call from my Dad who is the primary carer for my Mum who has PSP. He was unwell and there was a possibility they were going to take him into hospital. Obviously my Mum was very scared and crying - we live 4 hours away and although I was ready to get in a car and drive, I certainly wouldn't have been in time to get there before the ambulance.

Has anyone any experience in what would happen as far as help for my Mum is concerned? I appreciate they're not going to just leave her unattended in the house but is there a common practice for this type of thing?

As it happened Dad didn't need to go but we now realise we need a plan B. any help is much appreciated, thank you.

16 Replies

I am my husband's main carer and last year I awoke with severe back pain. It took me ages to get out of bed and I was crying with pain and the fear of what would happen to my husband who I had no hope of being able to get up and dressed. Fortunately we have a son an hour and a half away who is self employed, So I rang him and he helped that day. I knew I wouldn't be better the next day so I contacted social services and explained the situation. They managed to get him into a care home for two weeks as an emergency. The home is only five minutes walk away so I was able to visit him every day. I could walk but I couldn't sit, drive or lie down without severe pain. He didn't like being there, I didn't like him being there but I couldn't see any alternative. I don't know if your parents are in the UK. If they are, and haven't yet done so, get your father to contact social services now to get them known. The SS were involved with my dad. My husband and I went to be with him during an SS review at his house and the woman saw how Colin was. She asked if we were known to the SS and I told her we were self financing at that time and didn't need them. She said it is always better to to get ourselves known sooner rather than later. I phoned the SS at that time and someone came to see us to assess the situation. We have since been granted CHC but had we not, SS. would have known about us in the emergency.

Me getting I'll is one of the things I fear but I know phoning SS worked last time so would ring them again if I was unable to care for my husband.

Nanna B


Thank you for your good advice, I'll chat to Dad & see if SS are aware :-)

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Not sure what things are like in your area but here in essex through the council we have a plan B. I have a "carer's emergency card" wich is linked to an emergency care plan. There is a phone number to ring and id number to quote and they then implement the care that Brian needs. Perhaps you need to contact either local council or sociol services. Janexx

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I'll check this out - sounds like a really good plan. Thank you so much for your reply xx


Maybe you could also sign up with Crossroads . It is free and they doa sit service and on top of that they have a system where in an emergency someone will stay with te person for 48 hrs until things are sorted out .

I haven't had anY experience of this so far myself bout give them a ring . That is in the UK . I live in S Wales

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My Dad has PSP and my mum is his main carer. She has an emergency care plan and carries a card at all times. She can get 3 days emergency care for the situation you describe and this means the initial situation is addressed. We live in Cambridgeshire and it was arranged with Crossroads and I think the GP to Community Matron put us onto it.


I just rang their tel No and took our details . I didn't use them for a long time . When I did get back in touch to request a sitter it didn't take long . A sitter comes one a week for three hours while I go out .

Do as Nana says and get in touch with social services , through your local council and explain your concerns as for an assessment ,


Kate, Here's what I did. First, I got a monitoring device and wore it around MY neck so if I became in distress I could send an alarm to the monitoring company. They have instructions on who to call (besides the emergency people) like neighbors and family members who live close. I also posted a notice on the door that said "Emergency Responders - It is very important you read the message on the dining room table". On the table was an envelope that spelled out what PSP is (briefly) and what my wife (PSP) could and couldn't do (talk well, etc.). In an attached list were phone numbers of people to contact.

If something happened to me I was confident responders would have enough information to know my wife's needs and that she couldn't be left alone, and who to notify. If something happened to my wife and I wasn't there (another person was there) the same information could be given to the responders if my wife was transported to hospital.

Sounds like over-kill and I never had to use it but I wanted to be prepared.

In the document on my wife I stated her condition under categories like:



Eating and Drinking



I hope this will help you and others. Hugs, Jimbo

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I have no plan b perhaps you could write to me


my e-mail address is mombcd1@yahoo.com



please answer in caps and double spaced I value your answers to questions


Hi, I have just been in contact with social services myself. I can't fault them. One phone call and now there is an emergency plan in place. They just need to know you are out there and may need help, if things go wrong! Yes, it going to take a few weeks for a carers assessment, but that's fine. At least that awful feeling, "what going to happen to S if I'm taken ill or something" has gone! I feel two stone lighter, (shame the scales don't reflect that!!!)

Lots of love



Thats the sort of thing that I've got they sent me a card to carry that says in case of accident or emergency phone this number and quote this number. They sent me some paperwork to fill out and keep at home. Ie stating what the routine is what help is needed all medication taken where its kept etc.

I had my assessment over the phone wich was easy. I must admit once I signed up I felt happier because all our family live a distance away and only one out of the four has got a car. Take care Janexx


Here in West Yorkshire we have an emergency response team which you contact or you can go through Gateway to Care. We have a community matron who visits every 4 weeks and in an emergency (this weekend) she comes before her scheduled appointments. She is a godsend so if you ask your doctor if they have a community matron attached to their practice I am sure you would be amazed at what she can achieve. If we need any equipment she gets it to us within the week and has now passed us onto a further agency - (cas team) who provide everything from speech therapists to physio to equipment - the idea is you get referred early so you get used to the team who will look after you when you need major help later on in the PSP cycle. May help if you have access to these teams.


Your dad should have a ICER registration card. On that card is an emergency phone number to call.

ICER stands for Individual Carers Emergency Respite. You get that if as a carer you have done a carer's assessment. To have a carer's assessment you need to contact the relevant County Council and they will send forms to fill out. If he has not done it, then he should still call the County Council and explain the situation. The ICER scheme is a scheme between CrossRoads and the NHS. In a case as you describe, under the ICER scheme immediately a member of CrossRoads is sent to the house your dad and mum live in and they will stay 24 hours in the house for two days. And they will look after you mum whilst your dad is getting treatment in the hospital. If you dad is not able to resume its role of carer, a solution with social care of the relevant County Council has to be arranged, which can also mean that you mum is taken into a care home on a temporary basis.

An other question is whether / or not your dad has arranged for an assessment of your mum for continuing care. Again he only needs to call social services and they will arrange for an assessor to come and review the situation.

Finally, you may also call the relevant helpline of the PSPA to get advise and help.l



My god, you all have such amazing back ups in the UK. Here in the states unless you set up something individually you are pretty much on your own I was passing blood and experiencing back pain. This must have set off an anxiety attack because then I started experiencing chest pain as well. My helper had come to take my husband to the gym. I just drove myself to the ER. Stayed for ten hours then checked myself out because my helper had to go. Had a kidney infection and was on antibiotics for ten days that wiped me out. I just kept thinking,"I want somebody to take care of me".


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