He started out on his own, sharing his experiences of brain injury on Facebook with the thought that if he helped just one person in the same situation find greater positivity and motivation, it would be worthwhile. Four years on though and Paul Spence has achieved so, so much more.
In fact, he is now leading a key community health support service in Hull which has helped hundreds of people over the past year with advice, support and guidance, and carefully planned and continually monitored personal development programmes.
Since opening 12 months ago, the Paul For Brain Recovery Centre has been visited more than 800 times. Of those visits, 150 people have sought one-to-one mentoring from Paul and his team of brain injury specialist volunteers, benefitting from ongoing support as they rebuild their lives.
The centre has become a hub for people on all stages of the long hard road to recovery, and Paul, who has made a remarkable recovery from his own serious brain injury in 2012, is understandably beaming with pride. “I can’t really put into words how proud I feel. The pride comes from seeing someone walk in this door feeling lost to find a group of people who understand them and who can help them make positive progress in their lives,” he said.
“I’ve walked the path that everyone who comes through our doors is on when they turn to us. I understand that every individual’s goals are different, whether it be to simply get up off the sofa each day to getting back to work.
“There are so many obstacles to rebuilding your life after a brain injury and our team are here to support people doing that.”
From helping brain injury survivors develop a positive outlook to providing physiotherapy and fitness sessions, nutritional advice and support for family members, the Paul For Brain Recovery Centre has made an undeniably positive impact.
So much so that Paul and his team are hoping for good news soon from NHS Hull Clinical Commissioning Group (CCG) with regard to its long-term role in providing specific brain injury support services in the city of Hull. The CCG provided the centre for an initial 12 months, but such has been the demand for the service, which now has close to 100 visits a month, it is hoped a longer-term agreement will be reached.
“When we set out we were simply looking to provide a service which we felt was needed from my experience,” said Paul.
“I was passionate about it because once I’d left hospital I found there to be a major lack of community based support for brain injured people. That’s no criticism of anybody. The care I received in hospital was amazing and saved my life, but there is still a danger of people being lost when they are back in the community.
“Once you leave hospital you find your biggest challenge is only just starting, and that is adapting to your new life and finding it in yourself to accept your old life is gone forever. For every patient that has a brain injury, you may as well multiply that number by five in terms of how many people it affects within the community.
“The centre aimed to provide support for brain injured people and their families, and over the past year we are proud to say we have done just that.”
Having launched in April 2016, Paul soon found a large number of people requesting his help at his Wilberforce Health Centre premises.
With visitor numbers increasing, so did his own team. Leigh North joined to oversee the day to day management of the centre whilst brain injury case manager Ali Ward, who’d met Paul through his awareness and fundraising activities, volunteered her own services to structure the support packages being provided.
“In the initial days it was something of a support group, bringing people together and offering support and positivity, but it soon became clear that we had many people who needed regular one-to-one help and specifically tailored programmes” said Paul.
“Ali coming on board was like a gift as she had a family member who’d suffered a brain injury and was a case manager for brain injured people also, so she helped me massively in structuring our support programmes. It all just came together and we have adapted the service to meet the needs as the year has progressed.”
Following initial ‘getting to know you’ sessions with new visitors, which assess all aspects of their ‘self-care’ from happiness and hygiene to exercise, energy levels, mood, anxiety and socialising, each person is given their own individual progress file which logs their progress in both body and mind.
“We find that a lot of people who come to us have low self-esteem, can be anxious, perhaps a little depressed with where they are in life, and we need to help them make positive steps to find their pathway to a bright future.” Ali said.
“The focus is on providing people with achievable goals and helping them feel positive about their progress. It is important to set short term aims to get some positive outcomes rather than simply long term goals.
“Everyone wants to get back to as close as they were before as soon as possible, but Paul is great at being straight-talking with people and giving them realistic expectations. He has been there and they can respect it coming from him. He was told he’d never be the same person again and a huge part of being able to progress was understanding and accepting that.
“We ask people how they measure quality of life. It’s a great question to consider whether you’ve had an injury or not. What will make you happy? We then work towards that.
“We also have something called the ‘Tree of Life’, an image we show them which shows people in many positions. Some are climbing the tree, some are falling, some of them are on the ground. People give many different answers, but it helps us get a sense of what is in their mind.”
As accredited associates with a number of support services, including MIND (mental health support), Let’s Talk (Anxiety and Depression services), and Aqua Physio (mobility issues), the centre is able to refer clients to appropriate external support.
Paul’s is doing all and more than he set out to achieve.
His name has become synonymous not with brain injury, but with brain injury recovery, positivity, awareness, understanding, and love, as his charity logo says. The model of Paul For Brain Recovery is now being looked at by NHS England with a view to replicating it elsewhere, having pioneered in the city of Hull. Paul is certainly hoping to build for the future.
“I’m immensely proud of the support now provided for people with brain injuries in our community and we have to build on what we have started,” Paul added.
“I can remember they day I hung a whiteboard up in my living room. My family thought I’d lost the plot but it was a way of me finding something positive, writing it down and focusing on it. In many ways, we replicate that here with how we record the progress of those we support.
“It is often through talking and being open that you start to make progress. It was the start for me when I went onto Facebook and started sharing my story.
“Looking back, it was a big risk to open myself up on social media and expose myself completely in terms of where I was in my life. I’d struggled, all of my relationships had changed at home, at work and socially, and I was isolated.
“I didn’t know what response I’d get, but it was overwhelmingly positive and I soon found that there were so many more people out there in just the same position as me. There were also many families out there who had loved ones who had suffered a brain injury and were struggling to know how best to help and support them.
“There was massive need for community support, and that was the start of it all. “I’d love to replicate what we have done here elsewhere.
“Firstly though I want to continue making a difference here in Hull and the East Riding. Fundraising has been key and I’ve had the support of some brilliant sponsors, especially among the business community such as Hudgell Solicitors, who played a huge role in helping me establish the charity in the first place, and then in getting the centre open and operational this year.
“Now though we need the funds to not only maintain the service, but to expand it to be able to support more people. I know we’ve only scratched the surface of what we can do, and hopefully we’ll get the support we need to do so much more.
“I know we are providing a service which is much needed. All you need do is speak to the people we support. We’re a lifeline to them and that is very rewarding for all involved.”