Life after spinal cord injury can be immensely difficult, and is often exacerbated by an array of everyday health issues as a consequence of the injury.
Here, NR Times meets Stoke Mandeville Spinal Research – marking its tenth anniversary this year – whose focus is on funding the research that will improve the lives, and crucially the quality of life, for those who live with these challenges
Every four hours, someone in the UK sustains a spinal cord injury. Not globally. Just in the UK.
A shocking statistic which lays bare the scale of how widespread such injury is, with many of those injured sustaining lifelong consequences. Of those people with spinal cord injury (SCI) in the UK, 50,000 live with paralysis.
While vast advances in neuroscience now give hope that paralysis may not be permanent, and a cure may one day exist – certainly, therapies which aim to restore some movement and function are very much on the horizon – what exists for those people living with SCI to improve their quality of life now?
That exact focus is the priority of Stoke Mandeville Spinal Research. The charity, which was born from the work of consultants at the world-famous National Spinal Injury Centre at Stoke Mandeville, exists to fund and inspire the research which will help people living with SCI to enjoy an improved quality of life through the greater understanding of their priorities and concerns.
Through funding – since 2019 SMSR’s annual grant rounds have led to five supported projects which are now underway- it is hoped that new treatments and therapies may emerge, and those working in SCI can benefit from the dissemination of best practice.
And the focus of its research, on priorities which will make a difference to the everyday lives of people with SCI, is at the heart of SMSR.
“We were established to carry out quality of life research in SCI and that’s still our focus today. There are people out there who are looking for a cure for SCI, and that is really important, but realistically, a cure is decades away,” says Derek Cutler, research grants and operations manager at SMSR.
“We’re here to help people to live better with their injury in the meantime. And the research to help us achieve that is absolutely vital.”
The charity itself was formed in 2006, but took a huge step forward in 2013 with the advent of the priority setting partnership, established by the then-research director Dr Joost van Middendorp, who is now chair of the scientific advisory board. This year marks the tenth anniversary of this huge milestone.
“This piece of work identified the key priorities and the key research questions that are important to people with spinal cord injury, as well as for those who care for them and clinicians treating them. This is when we had a definition of ‘quality of life’ priorities for people with SCI, understanding what is important to them,” says Derek.
Four priorities were identified by the charity as a result:
- Assistive technology for upper limb function
- Neuropathic pain
- Pressure ulcers
- Urinary tract infection
Research is now targeted in these specific areas, with a number of projects already backed financially by SMSR whose work is helping to shed new light and potentially deliver transformative results for SCI patients in key priority areas.
“We’re very focused in what we fund, we want to fund things that have a really strong potential to support or to improve lives of people with SCI, very practical things that are really going to make a difference,” says Derek.
“The research we have funded today is, we believe, very promising. As one example, there is a project running from St George’s Hospital in London, which involves patients here at Stoke Mandeville, and involves a piece of targeted brain surgery to help relieve neuropathic pain.
“Hearing people describe what that pain is like is one of the worst bits of my job, it sounds absolutely horrific, experiencing a stinging, crushing pain, which can be very resistant to treatment, day and night.
“The approach used in this research is not a new technique, it has been used to treat pain from cancer in the past, but has never been tested on people’s SCI. So that is one very exciting project which could make a huge difference to people’s lives.”
In 2019, SMSR became a grant-making charity, with an annual search for key projects or research ideas, from which one is chosen as the focal point by its scientific advisor board. This year is the first the search has been extended internationally.
“This was very significant for us, in that we expanded our remit to support SCI centres and research centres across the UK, and now internationally too,” says Derek.
“We established a competitive bidding process and our scientific advisory board assess the proposals and make recommendations on what should be funded. That changed the way we work.
“The five research projects we have now have come out of this process and every year we see more and more interest and applications. We’re very encouraged by the response we see and the proposals we receive, there is some really very exciting and important work being done to improve lives.”
But while SMSR is committed to financing the groundbreaking research that can change the quality of life of so many people with SCI, its ability to do that relies on fundraising. The charity is funded entirely on donations, which – as for all charities – has become a much more difficult task since early 2020.
“It’s very difficult, the current economic environment as it has been for the last few years has made it very tricky,” says Derek.
“Also, I think because while SCI is, fortunately, pretty rare in comparison to something like cancer, people often like to give to charities where they have a connection. There is a smaller pool of people for us to tap into for our fundraising, which does make it difficult.
“But the funds we raise go towards changing the lives of the people who are living with SCI, and those who will sustain SCI in their lives. Our first projects funded through the grant programme will be coming to fruition in the next few years, which will be very exciting, and will show what our fundraising goes directly towards achieving.
“With our 10th anniversary, we’re hoping to make that a focal point for our fundraising, and to encourage people and businesses to get on board and support us. To be able to continue to make a difference to people’s quality of life is what we are all about, and we are so grateful for the support in being able to do that.”
