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‘WE KNOW IT’S DIFFICULT THAT’S WHY WE EXIST’
INTERVIEW
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An organisation established in response to the lack of community-based brain injury support is now helping to change the reality for survivors across East Yorkshire and Lincolnshire.
P.A.U.L For Brain Recovery has helped hundreds of people living with brain injury since its inception in 2016 and has created a dedicated centre in Hull to offer support to individuals and their families as they seek to rebuild their lives after the devastation of brain injury. The charity was formed by Paul Spence, who sustained a brain haemorrhage in 2012 in an unprovoked attack, leaving him struggling to cope with the new reality he faced. Having been forced to give up his career and deal with the breakdown of his relationship, Paul’s situation was amplified by the lack of community support postdischarge from hospital. But through discussing his experiences via social media, connecting him to other brain injury survivors, Paul realised the impact he could make on so many lives by leading the way and filling the void in community support - and through the creation of P.A.U.L For Brain Recovery (which stands for Positivity, Awareness, Understanding, Love) he and his growing team are delivering life-changing impacts to people in Hull and beyond. The expanding charity routinely works with people as far afield as Lincolnshire, who travel to its base in Hull’s Wilberforce Centre for access to its many sessions, delivered on both a group and one-to-one basis, which range from health and wellbeing, education, social groups, peer and family support and advocacy. A youth group has also been created, alongside a ‘Heroes Group’ who share experiences and help determine the future direction of the organisation.
INTERVIEW
P.A.U.L For Brain Recovery - which has secured funding from NHS Hull CCG in recognition of its role in community brain injury support - also arranges social outings and allotment sessions for its group. And for founder Paul, he is proud of the difference the organisation continues to make to the lives of people like him and his family, who left the outstanding medical care of Hull Royal Infirmary to be discharged to minimal support in the community. “There was no training or support. I was in a bubble and my family were looking after me, it was very difficult for them trying to muddle through. We very quickly realised there were very limited services in the community, not adequate services for the support brain injury recovery needs,” he says. “I couldn’t explain how I was or how I felt because I didn’t know. I was like one of those people you see in the movies who sits there staring into space. All I knew was that my life was different and difficult. “It has taken me years to make sense of it. But then when the insight does improve, that’s when the depression comes because you realise what your life actually is now and it pulls you down. “My relationship broke down, my social circles faltered, and you certainly find out who your friends are during times like that. People were having to grieve for the old Paul because he wasn’t coming back, and that was incredibly tormenting and frustrating for my family. “I had worked as an electrician since I was 16 and I had a good job as a foreman, and to be told it’s likely I wouldn’t be able to continue in that career was very difficult and really frightening. I did go back to work but had gone from being the strongest link to the weakest link. The lads had my back and tried to help me, but I had to admit that jobs I once could’ve done with my eyes shut, I couldn’t do at all anymore. It was a daily reminder of what had happened to me. “All your life you work on building your identity and then suddenly that is stripped away. You become very vulnerable, and life becomes incredibly tough. I’m privileged to have amazing family and friends, but they don’t know how to help you and there’s little to no support there to help any of you.” Determined not to let his injury beat or define him, Paul turned to exercise as a therapy, initially running a half marathon to raise money for Hull Royal Infirmary, which raised over £17,000, with thousands of pounds in further funds raised since. Wellbeing became a significant factor in Paul’s ongoing recovery - his story even being documented in Men’s Health magazine - with him realising the positive impact exercise, eating well and spending time outdoors were having on his life. “Training gave me a purpose, I was giving something back to Hull Royal Infirmary but also enriching my own recovery, my brain function relies very heavily on looking after myself,” he recalls. “It gave me discipline and helped me to realise a lot of things. I would go to the gym and at first just wandered around sitting on the machines, but I realised I was different so pushed myself to get past that. “It also made me think about my health in general, which included my mental health, and looking back it was a mistake to not open up about my mental health earlier. I had a lot of time on my hands, which I actually needed,
INTERVIEW
because that time alone gave me time to process and accept what had happened. “I now understood what happened in the early days of my recovery a lot better, and the reasons I struggled. I also realised there must be more people like me, and I wanted to help make a difference to them too - until I understood myself, I couldn’t work with other people, but I had reached that point.” From sharing his journey and thoughts on Facebook, Paul found growing numbers of people coming to him for advice, requesting his support in-person, with Hull Royal Infirmary also asking him to come in and speak to patients and families. He also did a number of talks in local schools to highlight the devastating effects that One Punch can have. “I wanted to raise awareness of ABI anywhere and everywhere, in any way I could. I had been to the NHS Hull CCG and said I didn’t think the support on offer was enough and told them about the service I was providing myself. They told me to put a business plan together and come back, which was the start of all of this,” says Paul. With the support of key contacts he had made, all impressed by the tireless work Paul had done in promoting brain injury recovery, Paul put together the business plan and secured funding from the NHS Hull CCG for a dedicated space in the Wilberforce Health Centre. Since 2016, P.A.U.L For Brain Recovery has built a five-strong team, delivering support to people and families whenever they need it. Leigh North joined as business lead five years ago and has worked alongside Paul in building the charity’s services and reach. “Our approach is very much about making the pathway from acute to community care as smooth as possible and to support people in that, helping them to avoid falling into crisis,” he says. “In some respects, this was initially a research project, which over the past five years has enabled us to develop focused, person-centred support plans to optimise recovery and minimise the long-term effects of brain injury. “Our overall aim is to help make life easier after brain injury and help survivors reach their new potential. We offer practical coping skills and knowledge to help them accept and manage their life-changing disability and provide healthy activities to improve emotional and physical wellbeing, so they can go on to rebuild a meaningful life.” And for Paul, he is proud of what has been created, and of the difference the charity is making to so many lives. “What we do is based on the lived experience of people who understand. We know what it’s like and we know it’s difficult, and that’s why we exist,” he says.
COMMUNITY REHAB
What began as a small Facebook group has now become the UK’s leading voice on Cauda Equina Syndrome.
The Cauda Equina Champions Charity is an active campaigner to achieve greater recognition of the condition, among medical professionals and the public alike, with a lack of knowledge leading to many people being undiagnosed and suffering in silence. The syndrome is a rare and severe type of spinal stenosis where the nerves in the lower back suddenly become severely compressed, and failure to diagnose and receive appropriate treatment can lead to greater risk of long-term consequences including incontinence or paralysis. Sexual problems are also commonly experienced by people with Cauda Equina, exacerbating the mental and physical effects of the condition. And to help increase its offering to people living with all aspects of the condition, the charity has launched its virtual Champions Connect service, building on the work it did in supporting people remotely during the COVID-19 pandemic. The charity continues to grow from its origins as a Facebook group in both profile and presence, now covering the whole UK from its base in the North West and offering support through rehabilitation opportunities and workshops for people living with the condition and its effects. “Statistics say there are 1,000 cases of Cauda Equina Syndrome a year, but that is from cases in the acute surgery and spinal units, not everyone will go there, and so not every case will be recorded. We estimate there are probably three times as many people who develop it annually,” says Claire Thornber, founder of Cauda Equina Charity Champions. “But without any public health campaign or public health messages, it’s still little known – and when 80 per cent of cases could have had a better outcome through earlier diagnosis, it shows the work there is to do. “What struck me when I had Cauda Equina Syndrome, ten years ago, there was more information out there for dogs with it, than for humans. Thankfully things have since improve, but as a charity we still hear the same stories of delays and misdiagnosis again and again. It’s frustrating. “Cauda Equina is so much more than back pain, and through having the charity and the support there, it will save other people the journey I had ten years ago. Through enabling people to manage their own pain, we’re helping them to better support themselves.” And in changing the situation for people with the condition, Claire is ensuring the charity works closely with the healthcare profession. The team - which is planning its first Cauda Equina awareness week from September 27 to October 1, culminating in an event for medical professionals - works with Spinal Units in hospitals across the country and also helps to train student doctors and nurses in identifying Cauda Equina ‘red flags’. “It’s great that the medical profession has really taken up the gauntlet, particularly in the last two years. There has been a lot of work with pathways, which is really important,” says Claire. “But even now, members of our group are going to see their consultant about their pain and are having Functional Neurological Disorder written on their file. That’s not good enough. “It remains the case that GPs don’t pick it up often enough, as well as A & E admissions. It’s great to see the amount of work physios have done in this area and they’re generally good at recognizing the Red Flags.. “We need to break down the perceptions and stigmas that still persist in society around low back pain, doctors and the medical profession included, and that’s where our work will continue to be focused.”
