I will remain a service user until the day I die

Because I have cerebral palsy, I have required social care support since I came to University in Coventry in 1992, and I will continue to require support until the day I die. While my needs may fluctuate, my general requirements will remain unchanged. These statements sound too obvious for an article although it is important to understand the emotional significance this has for myself and others.

So let us imagine at age 42, I have another 40 years to live, what could happen in that time? We are going to have 8 government administrations, 20 care ministers, 4 major reforms of social care that will change very little, and countless new ‘initiatives’ to keep everyone busy doing the same old thing. I am likely to have 20 annual reviews (as they are never done every year) from 25 social workers (yes, I can count!). I will be involved in 35 local government consultations from 12 directors of adult social care about cuts, and I will read 4281 news articles that will say everyone like myself will end up in residential care!

Meanwhile, my support package will be remaining pretty much the same despite it being called something new every few years. I will most likely still be employing a personal assistant, and hopefully still having live-in volunteers. I am likely to be the stability within an always changing social care system, outlasting every social worker, politician and social care policy. I will not be assessed because my needs have changed, but because the system has changed!

I have been trying to find an analogy to describe the total invasiveness of having social care, including the assessment process, to people who have no experience of being a lifelong service user. I have not so far been able to find one and this is a problem, as those in power will never be able to understand the impact of their decisions on people like myself, and the fact we are going to be here far longer than them.

When I have an assessment about my needs, the social worker is merely interested in what I need at that moment in time, while I have to considered what I require for the rest of my life. This makes the stakes high and while I can find these assessments a stressful time. It is also not just about receiving the support I require, but also that my personal assistant is dependent on myself for their livelihoods. Like in the movies, I am able to cope physically and emotionally with harm to myself, it is the harm to people I am responsible for that I find more difficult.

The fact I already have 25 years experience as a service user as well as being very involved in social care policy means that I know much more about what should be happening than the average service user and social worker. Also, it is unusual for someone with my level of needs to be working and have such high expectations from life, making it hard for those assessing me to understand my situation. I always try to start an assessment with an open mind and not going heavy on ‘do you know who I am?’,  but when assessments are not going the way they should, the natural control freak within me has to take over to ensure I get what I need and what I am entitled to.

Being a service user is something that I will never be able to escape from, there is no retirement plan from either managing my own personal assistants or being assessed by the state. My only escape from the never ending and often thankless role is my death, which will hopefully be many years in the future.

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