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 post-discharge 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 growing 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.
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 would 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, 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.
ABI strategy confirmed by Government
Huge breakthrough in support for people with brain injuries comes after Chris Bryant MP introduced the ABI Bill
The Government has today committed to producing a strategy to deliver better support to people living with acquired brain injury (ABI), following efforts from MP Chris Bryant and an array of charities and leading figures to force them into action.
In a statement, it was confirmed a strategy will be drafted with a call for evidence being launched early in the new year to help shape its development.
Gillian Keegan MP, Minister for Care and Mental Health, said the development of the strategy would be co-chaired by herself and Mr Bryant, with senior officials in all relevant Government departments invited to join the board.
“Following publication, the strategy will be kept under review and may be revised periodically to ensure that it continues to reflect the priority areas and actions needed to best support people living with ABI and their families,” the statement said.
The move by the Government marks a huge step forward in ABI provision, following years of campaigning from charities and survivors for more support. Mr Bryant recently introduced a Private Members Bill with the aim of forcing the creation of such a strategy, which was due to have its second reading in Parliament tomorrow.
Mr Bryant – chair of the All Party Parliamentary Group (APPG) on ABI and a tireless campaigner for the cause – had called on the Government to take action to ensure a more joined up approach from Government departments in supporting individuals and families affected by brain injury.
Last month, he delivered a letter signed by over 200 MPs, charities, brain injury survivors and other providers to 10 Downing Street, calling on the Prime Minister to take action. Following that, Boris Johnson confirmed in Parliament that the Department for Health and Social Care would be looking at the development of such a strategy.
It has also been supported widely by the public and via social media.
But today’s confirmation is a huge step forward and will ensure the development of an appropriate strategy, with input from families and professionals across the world of ABI.
Announcing the development on Twitter, Mr Bryant said: “ The Government has just announced it will draft a strategy on Acquired Brain Injury, set up an ABI programme board which will be co-chaired by Gillian Keegan and me, and will call for evidence very soon.
“So my ABI Bill won’t be needed. Many thanks to all who’ve helped!”
Charities who have been vocal in their support of Mr Bryant’s Bill were keen to celebrate the move, which comes after years of campaigning.
UKABIF hailed the announcement as “a gift” and the Disabilities Trust said it was “just amazing”.
The Child Brain Injury Trust added: “Fantastic news to hear. A strategy for ABI has been needed for so long. We are thrilled!”
UEFA concussion charter urges protection and education
The importance of educating players, coaches, referees, doctors and the public about dangers of concussion in football is highlighted
A European-wide football concussion charter has been launched, stepping up efforts to safeguard players and urging the education of those involved in the game around the dangers of impacts to the head.
UEFA has launched its concussion charter, which will apply to all teams taking part in men’s and women’s club and national team competitions across Europe.
The charter aims to reinforce the importance of good practice in concussion management and highlights the concussion procedures that should be followed.
It also promotes the education of players, coaches and staff about the concussion procedures in force at UEFA games. Team doctors are being asked to organise specific education sessions to brief players, coaches and staff about the concussion procedure to be followed at UEFA matches.
Furthermore, its 55 member associations are ‘strongly encouraged’ to deploy where possible, a medical video review system at their stadiums to enable immediate and informed injury assessments.
UEFA will facilitate the installation of the system with the host broadcaster. Home teams using a medical review system should offer the visiting team the same system.
Club and national teams are being urged to sign the charter to underline their commitment to safeguarding the health of their players.
In doing so, the signatories pledge their full support for UEFA’s guidance on how to recognise and manage a head injury from the time of injury through to the safe return to football.
“Everyone should know how to react and what to do,” said Tim Meyer, UEFA Medical Committee chairman.
“Concussion is undoubtedly a serious injury which needs to be managed and treated properly.
“The health and safety of any players taking part in Europe’s club and national team competitions is of paramount importance not only to UEFA, but also to national associations across the continent.
“Although research studies report a low incidence in football, everyone should know how to react and what to do in the event of a concussion on the pitch.
“By signing this charter, clubs and national teams will demonstrate their support for UEFA’s concussion awareness activities – and take a considerable step forward in helping to protect their players.”
The measure is the latest stage in efforts to safeguard players, following steps including UEFA’s implementation of a keynote concussion awareness campaign in 2019 and the Premier League becoming the first competitive league in the world to introduce concussion substitutes.
UEFA’s head injury procedure is:
• In the event of a suspected concussion, the referee will stop the game to allow the injured player to be assessed by the team doctor. Players should remain calm during the situation and not interfere with the assessment.
• The assessment should in principle not take more than three minutes, unless a serious incident requires the player to be treated on the field of play or immobilised on the field for immediate transfer to hospital.
• If the assessment cannot be made after the three minutes and/or a suspicion for a concussion arises, the player should not be allowed to continue playing.
• A player suffering a head injury that requires assessment for a potential concussion will only be allowed to continue playing after the assessment, on specific confirmation by the team doctor to the referee of the players fitness to do so.
The decision remains entirely with the team doctor. Coaches, referees and players are not allowed to interfere in the assessment and decision of the doctor.
Calvert Reconnections delivering positive outcomes
Only months after opening, patients are already realising the benefits of the groundbreaking neurorehab centre
Participants at ground-breaking neurorehabilitation centre Calvert Reconnections are already realising the benefits of the centre’s unique approach.
Calvert Reconnections opened its doors in June 2021, bringing a new, goal-focused, outcome-based approach to ABI rehabilitation.
Five months on, feedback from participants is now demonstrating how Calvert’s programme is delivering tangible results and pathways back to everyday life.
“Our programme is transforming the lives of our participants,” explained Claire Appleton, Head of Service at Calvert Reconnections.
“One of our recent residents said that his stay at Reconnections had transformed his quality of life, enabling him to return home, to his wife, rather than going into permanent 24-hour care.
“Such was the life-changing progress of another resident, he recently walked to the summit of Latrigg having only been able to walk a few hundred yards when he first came to stay with us.
“The whole team is hugely excited about the difference we are making to people’s lives.”
During meetings with other residents, Calvert Reconnections received the following feedback:
- “I feel comfortable here, all the staff are really nice, they put up with me being confused or disagreeing, they are very patient.”
- “You have made me realise you can get me closer to how I was before my accident. I accept who I am, I couldn’t do that before, I am OK with myself now.”
- “I now have confidence to go about my ways.”
- “You have improved my ability in lots of ways.”
- “I cannot think of anything you could do differently or improve.”
- The staff have a great can-do attitude.”
- “I feel like I am getting better, getting fitter every day – my friends say I am getting better.”
- “Doing different things all the time matters.”
- “The specialist bike, the other people and the staff are all great.”
- “I have a special bond with one of the participants – we love the banter.”
- “It’s good to feel fitter again.”
- “The staff are prepared to alter the programme with the weather and any other reasons.”
- “It’s the people – we all keep an eye out for each other.”
- “The food is great.”
- “I have a lot of trust. I am asked to do things which seem difficult but it’s been possible, I’ve managed to be a metre or 2 off the ground on the climbing wall.”
- “The cycling was good.”
- “I am working on my dorsiflexion and this is brought in to my activities each day.”
- “Reconnections has given me the opportunity to achieve my independence.”
- “You asked me how we could improve Reconnections. I have no criticisms – this is different to other rehab units, in a good way.”
- “This is the best place for me to be.”
Calvert Reconnections has also recently announced its winter activity programme which includes walking and star gazing, bushcraft sessions, environmental art, photography projects, rock climbing (Calvert sports hall available), canoeing (Calvert swimming pool available), equine therapy, basketball (Calvert sports hall available), curling (Calvert sports hall available), badminton (Calvert sports hall available), sledging, cycling, ghyll scrambling and orienteering.
The centre has also been shortlisted for Best Initiative in Care at the Caring UK Awards.
Calvert Reconnections has places available now. For further details, visit here
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