SUCAG blogs and biographies

Last year was the first time I properly got involved in what some people called ‘lived experience’ what other people call ‘service user involvement’. It had really opened my eyes to how powerful a voice you can have as a service user. When I saw the advert to be involved on the SUCAG I was immediately interested. This was partly because when I hear about social care in the media, or people just talk-ing about social care generally they never seem to talk about people like me. I feel completely unseen by the general population. In fact, there are even people who know me who don’t know I have carers, and those that do, I would guess, have no idea what the carers do. The SUCAG is a great way for me to be able to use some of my experience in a positive way to feedback into a system that I am a part of, and also to meet others who are also in the system so that I feel less alone and isolated. We are a diverse bunch of people with a really big range of experience.

I was also interested in the Experts by Experience role. This is where we work with researchers and people working in the system to investigate elements within social care. This is really important in order for things to change or move forward. Also, people of lived experience can look at research in a different way and can of-ten see things differently or see gaps in the system that others might not.

Overall, don’t underestimate the power of people of lived experience, we might have difficulties or disabilities but that doesn’t mean we cannot contribute: in fact that is the reason why we should be able to contribute.

Nothing about us without us.

I’m a 30-year-old father of 2 young children, living in South Gloucestershire. I’m an arty person, with a love for music and enjoy a DIY project. I happen to have Muscular Dystrophy too, making me a service user that requires full-time support from a team of skilled PA’s. My ultimate goal is to play a part in creating positive change within adult social care, as someone with valuable lived experience.

I’ve campaigned for the disabled community and have had my own lifestyle blog twodoughnuts, since my daughter was born 7 years ago. I volunteer and take part in a number of content advisory groups. I worked for a charity for 3 years in a varied development worker role, specialising in young adults with neuromuscular conditions.

Last year, I struggled to source adequate support. I was left with none, and I was running out of time and ideas. During this time, I saw an inviting email from the University of Bristol; the Connect-ED study. It stood out, as I thought I could be part of actual change. I’m not sure how that would look, though I could only try.

I have a full team of PA’s, after long and drawn-out battles with panels. I can now pay staff more to help retain carers, yet it’s still far from simple. Connect-ED was instrumental in me achieving this and it helped me to dig deeper than I had before. I’m closer to supporting change, whilst being surrounded by some very switched-on individuals.

To make changes we must all work together.

I joined the ConnectED project with the view of being able to share my own lived experience. I was registered blind in the late 1960s. Like many others at that time, my education was at special boarding schools for the blind which were often a long way from home.

As well as what is now termed as severely sight impaired, I am also dyslexic. As a result, my days at school were very challenging, partly because I only went home once a month and also because dyslexia was not heard of, so students with dyslexia might be labelled as not able to achieve much. Until recently the RNIB (Royal National Institute of Blind People) refused to recognise that there are people with sight impairments who also have dyslexia.

My own dyslexia tests were only undertaken many years later by City of Bristol college learning and development unit when I was also attending one of their specialist IT training courses.

It could be said my life has been a bit of an uphill struggle. However, on a positive note I have always said that to make changes we all must work together. At school I was involved with HACB (Hampshire Association for the Care of the Blind). There I was given lots of support and joined in with a variety of groups. The HACB also encouraged me to fundraise, which helped build my confidence. With HACB I was also called upon to provide support to other visually impaired clients who were in the process of being registered as blind or partially sighted.

After leaving school I trained as a telephonist and communications trainer, and I gained my marine operators radio licence. In Hampshire, I also became an accomplished sailor, achieving my RYA sailing certificates.

Over the years I have had two guide dogs of my own and looked after 17 others. The 18th will be moving in soon (a golden retriever) and this one is to be trained as my wife’s 4th guide dog – we are hoping the partnership will be successful.

In the early 1980s I joined one of the major clearing banks, working in the branch network and subsequently relocating to their head and regional office networks. I managed and developed equipment and trained other switchboard operators.

I am currently funded by South Gloucestershire Council to run my own Direct Payments package. I have lent my services and experience there to the senior commissioning and partnerships team, on numerous occasions. This has included working both as an advisor and trainer with their recognised providers, facilitating training for other service users, social workers of several different local authorities and chairing both local and national service user groups.

As well as all the above, I have been a school governor, and for the last 16 years have volunteered for my local Neighbourhood Watch in various roles.

Throughout my life I have always enjoyed helping with different levels of research. I believe that through working together the outcomes should be better for all.

Graeme has been contributing to a South Gloucestershire evidence review on Communication in Care Act Assessments.

I joined ConnectED as, as a carer and someone who uses services. I have been involved in many research projects hoping my voice will support with making improvements, however, I have seen little outcomes and am often left wondering who will read the reports... 

I was curious about the ConnectED project as its focus is to look at how research is used. The voices of so many, I think, are currently lost in reports that become outdated so quickly, I wanted to be involved in ensuring these reports are used, heard and support the growth of our services.