- Stroke is the largest single cause of disability in adults.
- Stroke is the third biggest cause of death.
- Stroke is in the top ten causes of childhood death.
- Stroke doesn’t just affect the elderly. 25% of strokes happen in people under the age of 65, including hundreds of children every year.
Different Strokes is the only UK charity specialising in stroke in working age adults and in children.
Different Strokes - the beginnings ...
Donal O’Kelly was a defending barrister in a London court when the stroke hit him. It was a severe one and he was not expected to survive the night in intensive care. Possibly because he was relatively young and fit, it was initially misdiagnosed, but later an angiogram settled the matter: it was an ischaemic stroke. He spent the next two months on a hospital ward, paralysed down the left side. He had also lost the ability to speak; he couldn’t walk, and was doubly incontinent and emotionally labile.
He tried to get back to work after nine months but realised he had sustained a neurological deficit, i.e. he was no longer as smart as he thought he was. He was encouraged to meet other young stroke survivors and soon recognised the value of peer support. At that time, post-stroke rehabilitation seemed to consist mainly of bingo and basket weaving at the day centre… and the odd visit to the zoo. There was little encouragement at that time for those who wanted to struggle back to normality as best they could and reclaim their lives.
The realisation dawned on Donal that younger stroke survivors needed much more to assist them if they were to make the best recovery their bodies would allow. That assistance was not easily available. Self-help was the way forward with gentle exercise offering an active route to improvement, and so later it became the kernel of Different Stroke services.
Donal was invited to address a World Health Organisation (WHO) conference in Denmark, on the plight of younger stroke sufferers. Out of that conference arose the “Helsingborg Declaration” which set stroke strategy for the next 10 years throughout Europe. It was at that stage Donal, with the encouragement of the WHO, committed to working to improve services for younger Stroke Survivors for 10 years.
Donal had previously collaborated with Rodney Cullum (chair of YMCA) on Bob Geldof’s “Sportaid”, and later became a trustee of the YMCA. With Rodney’s help, Different Strokes started exercise classes for stroke survivors at London Central YMCA. An “open day” was held on 21/09/96, and those interested in stroke recovery came from far and wide. Quickly it was realised that this was a nationwide need and maybe could be rolled out across the country, with the help of the YMCA network. What started off as a weekly exercise class in central London, became the core around which, with much effort and nurturing, grew the national charity. It was Donal’s idea and his energy that drove it forward, but he got help and support from stroke survivors and their families around the country.
The small team lent their many diverse skills to getting DS off the ground and spreading it out as a national charity. They very quickly got an interactive website up and running, one of the first in the charity sector and the first to have an interactive message board, a forerunner of Facebook and ideally suited to offering peer support.
Initially there was no money so no-one got paid. Donal had to use his own money for expenses, travelling up and down the country trying to kick-start local exercise groups, and using his flat in Hackney as administrative headquarters. Glasgow and East London were amongst the earliest groups, Kathleen Molloy and Steve George leading the way, but others soon followed.
In order to attract much needed funds, it was necessary to put Different Strokes on a sound footing and set out a proper strategy for growth. In Donal’s kitchen, a series of meetings of younger stroke survivors hammered out the aims and objectives of Different Strokes, and a carefully drawn up memorandum was registered with the Charity Commissioners. Trustees were appointed, all of whom had suffered a stroke, and patrons came forward.
In December 1996 DS linked with other disability groups and lobbied Parliament about the inadequacies of the Disability Discrimination Act. It has always taken a pro-active stance on behalf of its members. Donal was invited to the Department of Health to meet Frank Dobson, the Health minister, who expressed an interest in DS’s progress. The DS information pack was (and still is) full of practical information on the whole range of interesting topics a Stroke Survivor may need to know, from benefits and counselling, to getting back to work.
In 1998 DS developed a 12 hour per day “helpline” staffed by strokes survivors, and eventually persuaded a pharmaceutical firm to fund it properly. A professional video was also created to showcase the practical work of DS, particularly promoting the benefits of the exercise classes. Our director on the video had just finished filming on “Gladiator”, and gave his services without charge. The project cost DS nothing (and there was no bloodshed!).
Shortage of funds was a recurring problem, as it is for most charities as they start out. But the more DS did, the more interest it generated, and gradually funders began to support it. Roald Dahl and BBC Children in Need gave generously, and others followed.
Donal always tried to ensure that most of the DS Board and staff were stroke survivors; it’s run for and by its beneficiaries. Other disability charities suggested mergers but DS was carving a niche for itself amongst younger stroke survivors. Donal’s positive stance on stroke recovery was so much more appealing than the “stroke victim” label. The pro-active, self-help, can-do approach was very different than anything that had gone before.
Donal cultivated links with whomever and whatever could or would be advantageous to Stroke Survivors. DS were part of the Cochrane Collaboration which promoted evidence based medicine; only if a treatment could be shown to be of benefit would it be rolled out to the groups. Gentle exercise was universally accepted as beneficial. The World Health Organization took an interest in, and endorsed, what DS were doing, and the Royal College of Physicians invited us to assist in their development of National Guidelines for Stroke. Our information pack was made available to NHS Direct and used by their phone staff.
In the summer of 2003 Donal left the charity and returned to the world of law, ten years after his stroke. He now lives in Dublin, with his wife Linda and teenage son Finn. Before Donal left, Different Strokes had secured a grant from the Lottery and exciting times lay ahead.