How Headway helps put brain-injured on road to recovery

"THIS place is like a family," confides stroke survivor Josh King, reaching for the joystick on his wheelchair. It is 11am at brain injury charity Headway Swindon & District and he is long overdue for his bi-weekly session of maths exercises and brain teasers.

"There is no judgement here; you feel safe. When I first came here I couldn't speak and it was a struggle to get the words out initially but it got better. Now they can't shut me up," grins the ex-serviceman.

Josh was already confined to a wheelchair when he suffered a series of strokes. His third and final attack in 2012 was by far the worst.

Watching the effusive, easy-going father-of-seven launch into anecdotes of his East End days - breaking bread with Ray Winston, or cuddling a newborn Danny Dyer - it is impossible to glean the sullen man he was three years ago: a prisoner in his own mind and body.

"When it happens you can't see the light at the end of the tunnel," admits the 56-year-old from Wroughton. “But you can't look back, you have to remain positive. We're all here for the same reason. The circumstances might be different but we're in this together. It helps having people around who understand.”

Like Josh, fellow user Barry Carter, was unable to speak or process basic information most of us take for granted when he began attending the cognitive rehabilitation centre seven years ago following a stroke.

Once a voracious reader, the former college teacher is now slowly re-training his mind to follow a plotline, a few pages at a time, with the help of his dogged support worker.

Only a couple of years ago he was not capable of reading more than a paragraph in one stretch, let alone discuss so fluently his journey to recovery.

“The stroke was a massive change in my life,” the 64-year-old from Toothill says timidly as client support manager Sheryl Edwards proudly produces An Astronaut's Guide to Life on Earth, the hefty volume Barry has spent weeks pouring over.

“I haven't really made a dent yet but I want to be able to read again on my own one day and this is a start. You often feel defeated. Keeping motivated is hard and I've got a long way to go. But I’m more independent. I can do the cooking at home again and I'm doing things I didn't think I would be able to do again after my stroke.”

Barry's recent breakthrough and steady progress, nearly seven years into his rehabilitation may seem miraculous, or at the very least staggering in light of the two-year recovery window so often bandied around with brain injury survivors. While some believe recovery has an expiry date to some extent, Barry is by no means a lucky anomaly or exception at Headway.

“It is hard work getting back those skills you've lost,” concedes Sheryl.

“You're starting over. But we see people making incremental changes after many years. It depends on the person but we see it happen; we see change.”

For the past 25 years Headway has supported hundreds of brain injury sufferers like Josh and Barry through an often protracted and taxing recovery.

The charity initially operated from a single room at Victoria Hospital. In 2007, it moved to modest headquarters at Headlands. The end of last year marked a new chapter in Headway's history when the team signed a 15-lease on two large buildings at the Dorcan Complex, in a bid to meet the growing demand for its rehabilitation services.

The move however was far from seamless. Delayed planning permission and lengthy building work to bring one of the derelict buildings up to par, meant staff were forced to make concessions and cohabit with a construction crew for months on end.

Renovations were completed at the end of March and the team are only just settling into the new facilities.

“We didn't allow anything to stop us delivering our services,” says chief executive Jane Weston.

“We just had to get a bit creative. We invented a kitchen area out of a table and partition screens we got from Zurich. While the builders were in one building we moved into the other.

"It's wonderful now it's all done. We feel like we're finally launching into the next phase of our existence and growth.”

The protracted refurbishment came to more than £150,000 – a steep sum which has left Headway sorely out of pocket. Although funded in part by the council, the 12-strong team still needs to raise approximatively £60,000 a year to meet running costs of £325,000.

As it welcomes new users at its larger centre (11 started in January bringing the total number of weekly and bi-weekly clients to 79), the sum is expected to rise steadily over the next few years.

“The building work has left our reserves to the minimum level possible so we have to build that up again and it's a challenge,” adds Jane.

“This is a real investment into our future. The reason we have such a high running cost is the bespoke nature of our service. Providing the level of individual attention we do is costly but that's also what makes us so successful and helps our clients improve the most.”

The support team uses specialist software to design bespoke study packages with the input of each client, from spelling and maths exercises to information processing or reading. Every user is also invited to take part in very practical tutorials, to allow them to regain a modicum of independence wherever possible including cooking, how to deal with money or simply learning how to brew a cup of tea step by step– and steadily gnaw back ground from the damage caused by their injury.

“It's really important for them to be part of the decision-making process,” adds Jane.

“When you have a brain injury, suddenly you're in a position where everybody else is in control of your life. So it’s vitally important that the have control and that they realise that they can make decisions.”

Looking forward, Jane and the team are keen to introduce new activities such as shopping trips and gardening. Staff will also train users further along their recovery to man the building’s reception and greet visitors.

As it stands, 40 per cent of Headway’s clients suffered a stroke, 20 per cent were involved in road accidents, 10 per cent left brain-damaged after a fall and six per cent were victims of assault. The rest suffered brain injuries as a result of rare illnesses.

Regardless of the circumstances which led them to Headway, users are taken at their own level and speed and encouraged at every stage to go a little further, whether it mean solving a complicated division or simply shrugging their coat on without assistance for the first time.

“We focus on celebrating successes,” insists Sheryl. “Everybody's brain injury journey is unique. You have to be patient; there’s no quick fix. It can be very daunting for them especially if they are aware of how they were before, their confidence just goes completely. It can be very difficult to make peace with the fact that this is their life and this is who they are now.

“What keeps us all going is those golden moments – these breakthroughs, when they've finally unlocked that skill, when someone does something they weren't able to the day before. It may just be a small step but for them and for us it's momentous.”

Headway is looking for volunteers to join its ranks. For more information or to make a donation go to www.headwayswindon.org.uk