I had a haemorrhagic stroke at the age of 57. I was paralysed on my right-hand side and spent two weeks in hospital, followed by an Early Supported Discharge (ESD). Before my stroke, I had been running my own market research consultancy for many years. Suddenly I couldn’t work at all and I knew it would be very difficult to return to my business.
I had OT and PT support at home for about 6 weeks but this was aimed at getting me functioning in the home, not about returning to work. I had further help to manage fatigue, cognitive disability and psychological problems from The National Hospital, Queen Square. The Stroke Association, Different Strokes and Attend ABI also helped me.
I was able to gradually ease back into work after 18 months when I took on two volunteer projects through Reach Volunteering. These projects gave me the confidence to apply for a paid role and I was very lucky to be successful in my application to the Stroke Association for a position in the Insight team. I have to be mindful of my limitations, and I work only three days a week, but it has been a real joy to be back in the workplace and to continue to use my market research skills.
Returning to work is such a huge and important step for working age stroke survivors. I would have jumped at the chance to be part of the ReTaKe project. I did find help and support on my own, but ReTaKe brings the help to the survivor and aims to make taking those steps back to work so much easier.
I am now truly delighted to be part of the RetaKe PPI team, helping to make this specialist OT support available to those who need it.
Tony, North London
I had a stroke aged 50, which to me was very young, the NHS did a great job caring for me at the time of my admission to hospital, however in my opinion I was discharged without being given the help and advice I needed to return home and get on with my life. My confidence was gone and I went home with very little knowledge of what my future was going to be like. I was afraid to venture outside my house.
I lost my job and had no income.
I did however get advice from my local occupational therapy dept about a charitable organisation that had a once-a-week group gathering, I attended my first session with the help of my mum. Can you imagine being 50 years old, no visible disability and needing my 70 year old mum to bring me out?
The group was fantastic, they gave me support and helped me to regain my confidence, but this was a charity not NHS.
Social services, social security offered no help and I have remained unemployed for 3 years.
The Retake study - had it been in place at that time would have been a great advantage to me, they may have spoken to my employers and given me advice.
I have since regained my confidence due to a great charitable organisation, and now take part in the Retake study as a patient representative. This has given me insight to what can be done to help survivors of stroke to return to work and regain control of their lives.
This study needs to finish, to give hope to future stroke survivors