We have a number of patients, service users and students acting as our STaR Consultants and working with the team to coordinate the project. These are;
I am almost a pensioner with many years of experience in the Nursing /Midwifery profession. Following an honours degree and a year as a research assistant I moved to North Hull to start teaching in Further Education.
10 years later I became disabled overnight by breaking the bones in my back losing the use of my right leg, and through a clot on the lung and Asthma – found walking too hard. I have multiple long term conditions in addition to Asthma and 10 broken spinal bones, I have Antiphispholipid Syndrome (causing clots on my lungs and behind my eyes), Fibromyalgia and numerous other problems. So i’m a wheelchair user and require carers to support me throughout the day. I have become an extensive user of services both National Health and Social Care. I started working as a Service User consultant in Health and Social Care and also as an Expert by Experience and became involved in writing the Registration Documentation with CQC for Social Care Residential Homes. Up until a year ago I was involved with CQC inspections.
I have done a lot of work with the validation of the Degree for Pre-registration for Nurses at the University of Hull. Working on the programme management group as a lay member and working with the University with the Nurses mentorship programme.
I have given some insight into my experience as a service user of student nurses and allied professionals especially with assessing needs and assessing students doing Skills for Care practice. Looking at making Skills for Care a more holistic programme when it comes around for revalidation.
I have been fortunate to have an assistance dog through ADUK charity Canine Partners. She has been my partner for 5 years and will be 7 in November. She is a chocolate labrador and assists me in so many ways. She is my reason to get up and go every day. Maybe in the future I’ll write about what we get up to.
I’m a 51 year old fully transitioned transsexual male who is married to Helen Laws Fenlon also fully transitioned of many years, transsexual female. Between us we have 10 children. We both studied at Hull University.
I graduated in 2004 with my BA hons 2/2 in Gender Studies and Social Policy. Previous to this I was a mobile carer and previous to that I was a registered psychiatric nurse working as a staff nurse down south. In Hull I have worked both as a staff nurse in private nursing homes and in De La Pole Hospital.
I have also worked for 13 years with children who have behavioural, social, emotional and developmental problems.
I care for my wife who has epilepsy, eskeimic heart disease, had a heart attack and two stents fitted. She has acute kidney disease and only has one remaining kidney which has 20-25 % function, the other died and she got sepsis in it.
I’ve also helped my family in Liverpool care for my parents. My dad died with cancer of the pulmonary artery and my mum had COPD and her heart failed.
This experience and because I watched my wife work as an expert by experience for 5 years I decided to become an expert by experience. It was the best decision as I am able to do what I feel passionate about and that is giving service users a voice on CQC inspections.
I have been on many inspections across the health and social care interface. GP’s, assisted living those with autism, learning difficulties, behavioural problems, elderly and those with dementia. I have also been on a review of end of life care. At present I’m working with the CQC as an Insight and Engagement Partner on a DoH review of Care of the over 65’s and the interface between the the services.
For the last 6 years myself and my wife have been running a service user group for Transgender, non binary and those questioning their gender. We offer advocacy and support.
For the last 4 years we have also been running a trans youth group/drop in for 13 to 19 year olds. Again offering advocacy and support for family and friend’s too. We also offer trans awareness training.
For the last 4 years we have been involved in Public Health England and NHS England patient and public voice particularly for Transgender issues and have helped review and develop the service specifications for trans care.
I’m also involved in the Hull and East Yorkshire Equalities Forum.