What is (or could be) the role and responsibility of a social worker for someone with PSP?

I find there are quite a number of 'allied' medical services that may (or may not) be of value for the care of someone who has PSP. Most are self explanatory & there to provide practical support - for example a podiatrist to help with mobility, feet ankles & footwear. However I've always been confused with the role of a social worker - If you use (or wish you had the opportunity) to have a social worker to be part of your medical team what role would they assist you with?

7 Replies

  • Hi Sharon,

    In the UK a Social Worker would be the one to help you arrange carers and check you are receiving all the benefits you are entitled to. Not sure if they have a different role in the USA?

    Best wishes


  • Mum's social worker originally took over from a rapid response team who set up carers to help me care for mum as things had reached a peak and I was no longer able to do it all by myself.Her representative came and introduced herself and put mum onto 4 carers a day so that she was not left for more than 3 hours. Although she could walk about she couldn't manage anything else except make a drink for herself at that point but wanted to remain as independent as possible. When the social worker came home from her long holiday she cut off one of the carers as they 'usually only arrange for 3' As it meant mum would have to be left for 7 hours on the days that I worked I had to pay privately for a 4th carer. As soon as mum needed to go into a home the social worker cut us off, closed the books and said mum was self funding so she was no longer their responsibility (mum had always paid her way and had sold a house to go into the sheltered housing). Ordinarily they are a facilitator and arrange for benefits and care to be in place. But if you have never claimed benefits and worked all your life it seems this doesn't apply. Thank goodness mum had us.We never did meet the social worker and I only found out mum had been taken off the books when I rang and enquired about a wheelchair for mum. This may just be the area I live in (Medway) but I obviously feel they could have done more for mum.

  • It's a minefield I am starting to go down that road . Our OT has referred us to the social worker who has advised the carers agency . We started last Monday and have already had a different carer each night , they have told me they cannot handle him just hold his hand , That will be as use as a chocolate tea pot . I am 76 and have been doing everything . Hope they are not in our place in the future ..,..

  • I'm guessing you already know what I'm going to describe (as you live in Western Australia, like myself). My wife was already within a local hospital aged care system for falls before diagnosis. Once diagnosis was well established and I asked for high care in the home, they performed a review with an ACAT (Aged Care Assessment Team). She actually had two assessments (one in the hospital at the time she fractured her vertebra, and the other after rehabilitation of the fracture). This teams consisted of the doctors/geriatrician, physiotherapist, occupational therapist and a social worker and a couple of others. They have a meeting with family members and explain the type of care to be organised. Ours was an Extended Aged Care in the Home (EACH) package. It was the social worker (s) who arranged a service provider to implement the care, and the social worker is the point of contact should there be any problems with the service provider or if there is a need to change the package.

    I have no idea about the system in the UK or USA, although it sounds similar as described by Kathy and daughterno1.

  • We live in the Uk . I believe if you have a package puts i place while in hospital everything gets put in place . In our case I have been social worker OT Physio chiropodist hairdresser nurse , dogsbody , Psychiatrist , Could go on and on , lol

  • Hi,

    You shouldn't have to have an admission to hospital to get the services you need.

    Mum has 2 carers twice a day - once in the morning to get her washed and dressed and once in the evening to get her ready for and put her into bed. It sounds like the "care" that has been arranged for you is little more than what they call a "sitting service". I would go back to the Social Worker, tell her EXACTLY what help you need for your husband and if you are not happy with the Care Agency they have commissioned you can ask them to find another one.

    You don't have to struggle on alone!

    Good luck!

    Kathy x

  • I could get the care in the morning as well but at tone moment I am managing to do it myself .

    I try to keep some sort of normallity and really want to continue myself as long as possible . some say I am stubborn . Or rather in our owN time . As you all know everybody is so different and it will take a while for the carers to become familiar with how things are but if they keep sending different people that will be a more difficult .

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