Hello, (as many of you know) I’m Vivek Gohil, 27 years old living with Duchenne Muscular Dystrophy and Haemophilia but I am still leading a full active life. This post is a quick overview of my past/current care package and how receiving Personal Health Budgets has improved my life.
Throughout college and university, I received care via various care agencies to help me with personal and social care. This situation was adequately fulfilling my needs during that phase of life. Things really changed with my care after I ended up in hospital with Pneumonia, I needed a PEG feeding tube operation, so my carers required more medical skills training.
As of 2013, I received full care funding from the East Leicestershire & Rutland CCGs since my requirements were becoming more complex. Since 2014 my condition has progressed considerably, as I require CPAP ventilation throughout the night and 5 hours in the day. I need help with every task in the day, like setting up my computer with assistive technology so I can still stay connected to friends and involved with various charities. I am very passionate about understanding my disease, so I can be responsible for my health. Working together with charities like Muscular Dystrophy UK, DMD Pathfinders and Action Duchenne has given me the confidence and opportunity to voice my concerns about the care provided by the NHS.
About 3 years ago I started to become frustrated with how care agencies provided my care. I was continually training new carers which was making me and my Mum tired. My life revolved around the times the care agency was able to provide my care. This organization of my care needs didn’t work for me any longer as I didn’t feel in control of my daily life.
Mariyam Sidik suggested that I would be a good candidate to apply for Personal Health Budgets, which would allow me to be in control of my own care so more personalised to my lifestyle. I was successful and received the Personal Health Budget, however I was a little nervous with finding my own carers and becoming an employer. I decided to use Mosaic to look after the funding, payroll, recruiting and training of my Personal Assistants (PAs).
During the 3 years there have been many tricky situations to overcome but those experiences have taught me important lessons about confidence and moving forward positively. It has been a steep learning curve but a good one as now I can articulate my needs effectively which has made me more independent and assertive. This has enabled me to finally take control of my life.
Recently I took my PAs to attend conferences in London and Birmingham staying in a hotel over 2 nights. Personal Health Budgets has given me the freedom to live my life without worrying about care. I’m very grateful for the ongoing support and encouragement I received from Mariyam Sidik, as I now lead a fulfilling and busy life supporting others with a Muscle-wasting condition. I am very passionate about understanding my disease, so I can be responsible for my health. Working together with various charities like Muscular Dystrophy UK, DMD Pathfinders and Action Duchenne has given me the confidence and opportunity to voice my concerns about the care provided by the NHS.
I don’t want to say that Personal Health Budgets is the perfect solution to receiving care or plain sailing as you must manage everything however PHBs ideally works for me and I would not look back.