In this enlightening discussion, host Dr Ram Hariharan, a consultant at the Princess Royal Spinal Cord Surgery Centre in Sheffield and Chair of the UK Spinal Cord Surgery Research Network, speaks with Mr Nigel Henderson, a former consultant at Stoke Mandeville Hospital and later the clinical director of the National Spinal Injury Centre. He was appointed Clinical Director of the NSIC for 5 years before his retirement from the NHS in 2018. This gave him the opportunity for closer involvement in developing spinal cord injury services locally and nationally. He served as a member, then chair, of the Spinal Cord Injury Committee of the NHS England Spinal Services Group concerned with service organisation, specification and commissioning.
He maintains his involvement with spinal cord injury as a Stoke Mandeville Spinal Research (SMSR) Trustee, and the SMSR's work is discussed in this episode.
Mr Henderson explains the grant application process, providing valuable insights and guidance on securing funding for impactful research projects and that The SMSR prioritises funding research projects with the potential to improve the lives of those with spinal cord injuries. There is also great importance placed on reaching out to international researchers whilst investing in UK research. The Stoke Mandeville Spinal Research charity has evolved to focus on fundamental research topics impacting SCI patients’ quality of life: neuropathic pain management, UTI prevention, assistive technology and pressure ulcers.
We hope you enjoy listening.
The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.
If you enjoyed this podcast, please rate, review and subscribe with the podcast provider of your choice.
This show is brought to you by ISCoS - you can follow us on Twitter and LinkedIn
The SCI Care: What really Matters podcast aims to provide valuable insights and the most up-to-date information for those providing care to people with spinal cord injury (SCI) worldwide. The vision of the International Spinal Cord Society (ISCoS) is to "facilitate healthy and inclusive lives for people with spinal cord injury or dysfunction globally".
Partnership and collaboration are key to achieving this vision. Our episodes include expert guests, persons with lived experience and representatives from the industry supporting SCI care.
In this enlightening discussion, host Dr Ram Hariharan, a consultant at the Princess Royal Spinal Cord Surgery Centre in Sheffield and Chair of the UK Spinal Cord Surgery Research Network, speaks with Mr Nigel Henderson, a former consultant at Stoke Mandeville Hospital and later the clinical director of the National Spinal Injury Centre. He was appointed Clinical Director of the NSIC for 5 years before his retirement from the NHS in 2018. This gave him the opportunity for closer involvement in developing spinal cord injury services locally and nationally. He served as a member, then chair, of the Spinal Cord Injury Committee of the NHS England Spinal Services Group concerned with service organisation, specification and commissioning.
He maintains his involvement with spinal cord injury as a Stoke Mandeville Spinal Research (SMSR) Trustee, and the SMSR's work is discussed in this episode.
Mr Henderson explains the grant application process, providing valuable insights and guidance on securing funding for impactful research projects and that The SMSR prioritises funding research projects with the potential to improve the lives of those with spinal cord injuries. There is also great importance placed on reaching out to international researchers whilst investing in UK research. The Stoke Mandeville Spinal Research charity has evolved to focus on fundamental research topics impacting SCI patients’ quality of life: neuropathic pain management, UTI prevention, assistive technology and pressure ulcers.
We hope you enjoy listening.
The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.
If you enjoyed this podcast, please rate, review and subscribe with the podcast provider of your choice.
This show is brought to you by ISCoS - you can follow us on Twitter and LinkedIn
The SCI Care: What really Matters podcast aims to provide valuable insights and the most up-to-date information for those providing care to people with spinal cord injury (SCI) worldwide. The vision of the International Spinal Cord Society (ISCoS) is to "facilitate healthy and inclusive lives for people with spinal cord injury or dysfunction globally".
Partnership and collaboration are key to achieving this vision. Our episodes include expert guests, persons with lived experience and representatives from the industry supporting SCI care.
Contact us directly with any questions or comments at iscos@associationsltd.co.uk
Speaker 1:
Hello everyone, welcome to this episode of the fourth series of the Spinal Cord Care what Really Matters. I'm the host. My name is Dr Ram Hariharan. I'm a consultant working at the Princess Royal Spinal Cord surgery centre at Sheffield in the UK. I'm also the chair of the UK Spinal Cord surgery research network and I work very closely with researchers, which is one of the reasons I would like to interview my colleague, mr Henderson, this morning. I'm also the chair of the local organizing committee of the International Spinal Cord Society meeting that's coming up in Edinburgh in October 2023. I would like to welcome Mr Nigel Henderson.
Speaker 1:
Mr Nigel Henderson wasa consultant at the Stoke-Mandrel Hospital. He joined as a consultant orthopedic surgeon in 1986. During his work as an orthopedic spinal surgeon, mr Henderson developed a very close relationship with the National Spinal Injury Centre. He later on became the clinical director of the centre for five years. Before his retirement, mr Henderson was not just a surgeon. He was also a very passionate trainer and was very closely involved in surgical education. He became the president of the British Association of Spinal Surgeons and a member of the UK Spinal Society's Board.
Speaker 1:
Following his retirement, mr Henderson continued his passion for research and training by being very closely involved in the development of the spinal cord injury services locally and nationally and he served as a member, then chair, of the spinal cord injury committee of the NHS England Spinal Services Group, concerned with service organization, specification and commissioning. Mr Henderson maintains his involvement with the spinal cord injury work as a trustee of the Stoke-Mandrel spinal research. We're going to be looking into the charity that supports a lot of research within the UK. The aim of this podcast is to understand the work of the Stoke-Mandrel spinal research charity and the opportunities they provide for research funding. We'll also gain some insight into cutting-edge research projects in the areas of UTI prevention and treatment, neuropathic pain management and assistive technology for upper limb function. Nigel, it's a pleasure to have you as my guest and I welcome you to this podcast.
Speaker 2:
Well, thank you very much indeed for asking me to join you, and I'm very happy to talk about the charity I'm so closely involved with.
Speaker 1:
Thank you, nigel. So, if I may start by asking, what is the Stoke-Mandrel spinal research charity all about? What are your aims and how do you actually go about promoting research in the UK?
Speaker 2:
Well, the the inspiration for this charity was to try and enhance spinal cord injury research for those that, so sadly, have been affected, and the original idea came from founding trustees. That was Hans Frankl, who many of the listeners will be familiar with, professor Paul Kennedy, who is internationally renowned in his work in psychological aspects of spinal cord injury management, and also one of our very well respected radiologist, tom Maher, and they worked initially to raise some funds, which they were very successful through generous donations, and in 2013, we began to fund some research projects with our first research director, josefann Mittendorf. We undertook several projects based here in Stoke-Mandrel, but then reviewed in 2018 what we'd been doing and felt that we were not sufficiently focused. So we went away and reflected on our achievements and, with the help of external advice, decided to focus our efforts and our grant making in four priority areas. These are neuropathic pain, excessive technology for upper limb function, pressure ulcers and urinary tract infections.
Speaker 2:
The way we now work is we no longer have a research director, but we're simply a grant making organization, raising money and calling for grant applications on a yearly basis, and these applications are submitted to our international scientific advisory board, who are completely independent of us. Before that we approve funding. I should also add that we, as a charity, are completely independent of other institutions and of the NHS, so we can make our own decisions about what we do, although we are affiliated to the Association of Medical Research Charities, following best practice in transparency and so on. So that's, in a sense, what we do. We now, in summary, give grants and follow those through, and the idea of this was really to encourage focus with through multi-center trials and partnerships between clinicians and universities, which we've been successful in doing.
Speaker 1:
Thank you, nigel. That's a very comprehensive account of what the charity does and I think it resonates with some of the work that we've been doing With the UK spinal cord injury network. The whole idea is to bring together clinicians from the various parts of the country and, as you all know, iscos was founded in the UK but unfortunately we don't have very much of research coming out of the country. We need more work going on and it's good to know how you, as a charity, are Independent and you are able to decide who to give grants to.
Speaker 1:
And I also note that some of the areas that you touched upon Is really focusing on people living with the injury, because a lot of research when we hear about spinal cord injury is about the molecular level. So it's all about cure trying to identify what are the chemical changes that happen in the acute phase and what can we do to prevent them and it's all about trying to get people back into a mode of cure. So people do get a bit diverted into thinking there is a cure for spinal cord injury, but it's equally important to look at those people living with the condition and some of the complications that they live with. And you've rightly identified, you know, the UTI, the neuropathic pain, the robotic technology and all the rest of it. So how do you actually prioritize? I mean, how are you able to come to a process of prioritizing which area that you want to promote out of these?
Speaker 2:
Yes, I mean you highlight very much what we're about. We're not about the cure, we're not about trying to minimize nerve damage at the moment of impact and so on. We're very much about Trying to improve quality of life and address the challenges that people with spinal cord injury face. That's, I suppose, the core inspiration for the charity. As you see from the priority areas those priority areas we looked at all sorts of different things that we could be focusing our funding on, and those are the four that we picked initially. That doesn't mean to say we're stuck with them. We will. In fact, we are reviewing what priority areas we should focus on, going forward according to what we feel is important. But those types of areas came out of some work we did with a priority setting partnership. Joes van Mittendorp, our then research director, worked with the James Lind Alliance for the first priority setting partnership in spinal cord injury Back in 2013-14 and we asked a large number of patients and people with spinal cord injury and their carers, their doctors, their therapists and everybody involved what they felt it would be valuable to fund research in, what areas we should fund research in, and we had about 800 different suggestions.
Speaker 2:
Going through those and seeing what evidence was was available for those and distilling them down, we got about a hundred distinct areas for research that might be worthwhile and then, through a consensus process, we came up with ten priorities and, interestingly, only one of those priorities was to do with stem cell research and basic science. The rest were to do with daily issues of quality of life and with issues of rehabilitation. So that's really where we come from, and perhaps I can mention that we've also been through a similar process for children, because regrettably, children also sustained spinal cord injury fortunately not too many of them and this process that we've gone through with children, we've had to go internationally with Switzerland, sweden and Spain to get the numbers to look at, and they do have different priorities to the adults, including things like peer relationships, schooling and so on. So those are different areas for us or someone to pursue in the future.
Speaker 1:
Thanks, Majel. That's really interesting to know your consensus approach, the approach of what really matters. You're asking the patients what matters to them and this often doesn't get highlighted. When it comes to research. People do what they are able to do, what they are passionate about, but sometimes don't really consider not all the time, but very often they don't always think about what it is that matters to the patients.
Speaker 2:
Absolutely. I think that's fundamental, and we think people who are not involved in the spinal cord injury world what they see as a wheelchair. People talk of the iceberg. The wheelchair that you see, if you like, is the 10% on the top, and the 90% of the iceberg is all that goes on underneath. Those individuals have to cope with the difficulties with their body and their natural functions, difficulties with psychology and family relationships and self-image and, of course, difficulties in managing their life, and so that I think is really important what matters.
Speaker 1:
And also I think one of the areas that Stoke-Mandival is especially good at is the children's care. I don't think there are any other centres that actually look after children's spinal cord injury. I think you are well placed to be doing some research with children and, as you said, I completely agree as a clinician. We do have a children's hospital in Sheffield and we do work with them and their priorities are different, and you did mention that there may not necessarily be regarding any of the factors that you have mentioned in terms of the pain or the UTI. It is about return to school, it is about how they get along with peers, and I think it is also important for parents to recognise how to deal with a child who has got this life changing injury and how they support them through. So any particular areas that you have focused on so far with children with spinal cord injury?
Speaker 2:
Not as yet and we do very much look forward to receiving a grant application for children and we would very much like to and encourage that and of course, even within the current priorities there are aspects which may be relevant to children. We are always happy to talk to people to extend our priority areas with due consideration, but at the end of the day we are absolutely clear that the grant applications have to be for good research, valuable research which will result in an outcome that has some meaning for patients. That's why we select the research projects very, very carefully and I think that the grants that we give up to three hundred thousand pounds over three years for a research project all of course we will find research projects that are not that expensive. These are significant sums of money, but of course that's the limit of what we at the moment can afford. But we would like to be able to give bigger grants in the future, I'm sure.
Speaker 1:
That's very, you know, encouraging to hear that. I'm sure that will attract a lot of researchers to approach you for doing clinical research. And can I ask, out of the research is that you have done recently, is there anything that I've actually translated into application as a clinical practice? Because most of the research unfortunately does not really translate To practice another. You know there are hurdles to cross in terms of getting into the nice guidelines and all the rest of it and getting it approved. So have you had any challenges in translating some of your research into practice?
Speaker 2:
as I indicated when we started, it's a relatively young charity and I'm more focused approach. It has only been going on for the last four years or so and, as you recognize, research does take a long time to translate into clinical practice through publication of results, through People looking at those results, through other research to establish that other people can achieve the same results and so on. But we have completed one Good, if you like, pilot project with the London spinal cord injury center at stand more, using into the cycle antibiotics to prevent uti patients, instilling Jenta, my sin, into the bladder to reduce recurrent uti's and found a significant reduction 89%. Now this was a pilot project over two years. The numbers are small but nevertheless, of course, very encouraging. So this will enable that spinal center to apply for a much bigger grant, possibly an hr grant with bigger numbers, to get better results over time and really make it hopefully an established method of management.
Speaker 1:
Thank you.
Speaker 1:
That's a very interesting piece of work because if you go back historically when Sir Ludwig Gutman started the center in the 1940s, we all remember that one of the commonest causes for mortality following spinal cord injury was related to bladder and the renal functions, isn't it?
Speaker 1:
People didn't know how to manage the bladder, people developed uti's and had died of it, and obviously that is the care. The bladder management has really transformed the life of people with spinal cord injury and they've started living longer with it. And it's great that there's still ongoing research with it. And I've heard of this particular research that you mentioned about and how effective it is. But unfortunately it is about getting it out to all the centers to be able to practice it and to develop it as the best kind of practice that is approved and there's standardized across all the centers, and that's what we need to do. And I wondered whether bringing such pieces of research to be meetings like the SCOS Would be the right way to try and highlight some of the achievements and try and bring out more multi center trials that can then generate more guidance and support, to get into the nice guidance itself.
Speaker 2:
Yeah, absolutely you're right. These results do need to be taken to meetings, which they are, and they are this pilot project and the results are shortly to be published. So you know, the word will be on the street and it's for others to take up. And, of course, I think it is exciting because we're all nervous about using antibiotics and the idea of instilling the antibiotics, hopefully with less side effects and less microbiological consequences, will prove to be a good one. And certainly thus far, the results are encouraging.
Speaker 1:
You also talked about the funding opportunities and how the process itself goes. So for a young researcher, if they want to apply for a grant, or a clinician, or anybody for that matter, if they want to approach the charity and make an application for a research project, how long does it take for them to actually get it approved and for them to get the funds to be able to start? Because everybody works against a time frame. How long does the whole process take?
Speaker 2:
Well, the process is like this we put out a grant call now in about September, late August, early September, and that time frame is established on a yearly basis. Now we put out that grant call, there's an initial screening, of course, then it goes to the International Scientific Advisory Board and they come back to us. So we're hoping, and indeed thus far have achieved making the grant through the charity in about March, march, april time, so that funding following. Of course there's a level of bureaucracy with the trusts and the other institutions who are going to undertake the research. There really should be no reason that that funding shouldn't be available within a year of applying for the grant. I know it does sound a long time, but these steps do take time. So it'll be about a year.
Speaker 1:
Okay, that's very helpful because obviously somebody who can start work early on and at the same time apply for time they may want to dedicate for a research and by the time it comes, hopefully they'll also get the approval for their study leave or whatever to be concentrating on research, because as a clinician, you will know how difficult it is to actually marry up clinical work and research.
Speaker 2:
Absolutely, absolutely. And also, you talk about young researchers. We are keen to support young researchers and have started with a PhD, a specific PhD studentship, if you like grant. That's for a little less money but that grant will cover research costs, living costs and university costs for a young researcher who wants to do a PhD Under the supervision of a university. And we've made the first of those grants now for a young researcher in Glasgow. He's looking at the use of gaming to make specific programs with virtual reality so that the user, the patient, the spinal cord injured person can use virtual reality in upper limb, particularly hand rehabilitation, and watch and get immediate feedback of exercises and tasks. And of course those tasks and exercises can be changed over time by the programmer. And of course the virtual reality headset can be taken home and used for much longer than you might do therapy with a physiotherapist. So I think there are some exciting possibilities and so far that virtual reality project is running well, we're well into it now and it's looking promising.
Speaker 1:
Thanks, nigel.
Speaker 1:
Actually, I was actually going to go into virtual reality next and you nicely let me onto it, and especially because in the recent conference that we had, the Guttman combined with the BSPR meeting, there was a workshop on virtual reality and I had the opportunity to interview one of my own colleagues, dr Abewami Salawu, who is a consultant at the Hull Rehabilitation Center and he's actually established a virtual reality setup in Hull, using it for people with traumatic brain injuries, and he found that very successful and that is how he brought this whole workshop.
Speaker 1:
He ran the workshop at the conference and I asked him about the use of virtual reality and how we could actually use it for people with spinal cord injury, and that's an area that is quite exciting and interesting and I would be interested to hear more about your research in this area and how we can actually make it available, because in this day of technology, I think the cost is not going to be very prohibitive. I don't think the headsets are not that expensive and people can actually even purchase them and use them in their spaces and try and get the maximum benefit out of it. So can you tell us a little more about the work so far that has been done with virtual reality.
Speaker 2:
Well, the student has now developed some exercises and a suite of personalized exercises for patients and I think, if I'm correct, he's starting to work actually with individuals. But it's got at least another year to run the project so we haven't actually got as far as the end result, but the preliminary work and the software engineering and the way that it will happen with graded exercises and rehabilitation is advancing. So we're looking forward to that space with great interest.
Speaker 1:
Especially. I think there are benefits from two fronts when I look at it. One is we have shortage of therapists in all centers. The constant complaint that people with spinal cord injury talk about is a lack of therapy input. They feel that once they come to a specialist center they need to be completely engaged in therapy all the time At least most of the waking hours they want to be engaged in therapy and that actually helps them psychologically too, because they're not doing anything. Then you just start wondering about what's going to happen in the future and all the rest of it.
Speaker 1:
And I think virtual reality has benefit in both areas. They've actually even tried in people with dementia trying to put photographs and because their memories goes back to the younger days. So putting photographs of their areas of familiarity, their family members and all the rest of it actually makes them more familiar and less irritable and aggressive. And this is again for people with spinal cord injury. But they've had this change to their lives and everything they have got dependency on other people. Using virtual reality can be a huge benefit to help them cope with it. And also for Aplum, if for various reasons they are bed bound, so with a pressure ulcer or an infection and they can't go down to therapy. If these can be used in their bedside, I think that's a huge benefit while in the hospital and also when they go back home.
Speaker 2:
Yeah, I think it's going to be a big advance if we can develop it Absolutely.
Speaker 1:
Yeah, you know, in our center we have a room where people can go and relax. So they have. We don't have a headset or anything like that, but we have a big screen where you have very calming kind of pictures and videos that people can actually look at and take a nice time of relaxation to help them progress through. Just to go back to the applications for charity for research, are you only looking at applications from within the UK or do you look at applications from abroad?
Speaker 2:
Well, that's an interesting question that has developed. When we first started being a full grant making organization 2019, we asked that the principal investigator and principal institution, be it a spinal cord injury center or university or other institution, be based in the UK. They could work with international institutions as partners, but we felt that, to try and stimulate more project applications and better project applications, we've now said that we will accept grant applications from institutions, universities abroad, so long as they partner with somebody either clinical or university in the UK for part of the work, so that, if you like, we've said that the center of gravity of the research could be abroad, but we're still concerned that there should be investment if you like, put it that way in UK capability and partnership.
Speaker 1:
Yeah, that's very clear, and the reason I asked the question is about because we now own network meeting. We once had an international researcher presenting his work with regards to stimulating the bladder. He used a tibial nerve stimulation for bladder control the intracruous hyperactivity and this is something he is actually working in partnership with the Imperial College in London and that's a piece of work that we have been trying to bring to the UK so that we can trial it across the various centres, and perhaps I'll probably encourage him to contact and find out if we can work together to develop a multi-centre trial within the UK as well, along with the centre that he works in India.
Speaker 2:
We mustn't forget that the UK is a very fertile area for spinal cord injury research, in that the centres in the UK talk to each other, they work together in many aspects, are unified and the National Health Service itself does, of course, provide a level and unified platform for research. So I think it is the environment in the UK does offer big opportunities.
Speaker 1:
Just moving on to another area that you've been doing quite a lot of work in is a neuropathic pain, because that's one of the big areas that people suffer from lifelong, and it's a bigger challenge because the medications that you give for people with neuropathic pain can actually have so many side effects that makes them less able to participate in their activities. So it is very difficult to balance, and especially with the changing demographics older people with spinal cord injury having neuropathic pain. Giving them a pain medication that are currently approved by the NICE guidelines makes them completely sedated and not able to participate. I would be very interested to hear about your work in the neuropathic pain.
Speaker 2:
Yes, we've got two exciting areas, and the first is using brain waves, electron cathalography measurements, to try and predict those individuals who will unfortunately develop neuropathic pain. And it has been noted that there's increased activation of the brain cortex, increased excitability if you like, before clinical neuropathic pain develops, before the individual is aware of it. So if we can pick out those who may develop it at an early stage, even quite early after injury, then that does give an opportunity for trialing treatment in a more preventative way or at a very early stage in the development of neuropathic pain, which itself, I think, cements its pain. You correct me if I'm wrong. I think the pain cements itself in neurological patterns, in nerve patterns, so we try and break into those early. Perhaps the same drugs may be more effective at an earlier stage, in a lower dosage, with other techniques, hypnosis and other things, or with neurofeedback. I think there is the beginnings of some evidence that neurofeedback at an early stage maybe of some help. So that research based in the University of Glasgow is coming through and is coming towards the end and is, I think my understanding is correct is showing some promising signs of being able to predict the individuals at risk.
Speaker 2:
So that's one area we've invested in. The other area we invested in is, if you like, very much at the other end of the scale, very much end stage, crippling neuropathic pain. The neuropathic pain that spinal cord injury people will tell you is much worse than having the spinal cord injury itself and that is in neurosurgery. And the department at St George's is looking at the possibility of stereotactic surgery, very, very finely targeted surgical intervention to interrupt pain pathways. Singulotomy is the pathway or the technique to try and interrupt the pain pathways and relieve the pain. But this, this I think, is very much at the end stage and investigational end of treatment. But we did feel, hopefully at the end of the day, that for some individuals it may offer a way out. But this research is at the moment at an early stage.
Speaker 1:
You addressed both the ends of the neuropathic pain. I mean. Often when people talk about rehabilitation they it's often looked at as you know, catching somebody at the end stage everything else has been tried, it's all burnt out and now we're trying to redo it. And this is really about early detection. I personally believe, and I'm sure you agree, that rehabilitation starts on day one. The whole concept of rehabilitation spinal cord injury is involvement at the seat of the accident and trying to guide them through.
Speaker 1:
And especially for pain, early detection and early treatment has got a huge benefit and I totally agree with that, because initially pain is a symptom and then becomes a disease in itself. And before it becomes a disease is when we need to address it and try and manage it as best as possible. And we have seen that in the phantom limb pain for amputations. People have suffered a lot of pain before their amputation, have phantom limb pain after the amputation. So there is a correlation between the early symptom and how they suffer the problems in the long term. So that's very, very interesting to hear that early approach and also looking at the people who are living in the long term with these conditions and you know, hopefully if there are treatments that do not actually need long term medications. It will definitely help people in especially the old age with a lot of other comorbidities that less medicines they take the better. So that's very interesting area and I'm aware that I think it's a John Riddle in Glasgow is someone very heavily involved with the neuropathic pain and hopefully we can look at more developments in that area in the future.
Speaker 1:
The other area that you mentioned, which is again, you know, a very, very known problem which is potentially a killer in many areas, is a pressure ulcers. Again, we can argue that this is something that is preventable and it all depends on how. Will you indicate somebody that you know you just can avoid developing a pressure ulcer? I've come across people living having lived 20 years without ever having developed a skin breakdown, so I'd be interested to know what kind of research you have done in pressure ulcers. Is it more in prevention or in treatment? Or I'm sure it might be probably both.
Speaker 2:
The fact is that as yet we have not funded a project in the investigation of pressure ulcers.
Speaker 2:
I mean, of course, grant giving is, regrettably, to some extent a competitive business.
Speaker 2:
We only have an envelope of money that we can give and we have to invest in what we think may be the most productive grant applications.
Speaker 2:
We've had good applications but not quite there. We hope that we may get more, but of course this also raises the whole question. I think in my mind that we are keen that researchers who are not necessarily focused on spinal cord injury as a specialty or as an area of research, but are focused on, for example, tissue viability and pressure ulcers, may realize that within spinal cord injury is a field there is funding available for pressure ulcer research, because of course, pressure ulcers affect vast numbers of patients in the National Health Service, patients with other neurological conditions and diseases, patients with diabetes, patients with other medical conditions and the elderly, so that we have to remember that funding research, if we come at funding research from the perspective of spinal cord injury, that we must encourage and look at and are prepared to look at research in other fields which is directly applicable, if you like, to those with spinal cord injury and we're hoping that we may be able to fund within pressure ulcer the pressure ulcer field shortly.
Speaker 1:
In Sheffield we get contacted by a lot of other departments to help with people having pressure ulcers and we can almost look at developing a complex wound management service led by people with spinal cord injury, simply because we've got expertise of dealing with pressure ulcers in chronic neurological conditions. And perhaps you probably are looking at how you can even attract funding from areas like the multiple sclerosis society and all the others. Because if we are able to address problems with people who have multiple sclerosis and other long-term neurological conditions, because the complications are quite common neuropathic pain that we spoke about, pressure ulcers, joint contractures, psychological impact all these are pretty much the same in all people with long-term conditions. Therefore, the approach cannot be varied. It's very similar.
Speaker 2:
The problems are the same. The etiology varies.
Speaker 1:
Yeah, that's absolutely right. And the other interesting thing I picked up from what you said, nigel, is about encouraging people who are not particularly working with spinal cord injury, but you said somebody with gaming who was an interest and who has the expertise you know you welcome them to help us develop a product. Say, for example, a VR product does not have to be a clinician. It may not be that a clinician is great with technology, but can actually work together with somebody who has expertise in that area and who can actually help develop it. So do you also take applications from, say, for example, somebody who's doing a mechanical engineering or who's doing a product deciding, who understands what it is to help somebody using their gadget?
Speaker 2:
Yeah, I mean we do. We have a project in robotic exoskeleton for upper limb rehabilitation and that, of course, is very much an engineering project. It's a clinical, it's the interface between the clinical requirement of an upper limb exoskeleton and the engineering involved with making that work. And this project is looking at a portable, wearable upper limb exoskeleton and looking at its user satisfaction, the health, economics and so on, and is also looking, researching the way it's used and other aspects to inform further engineering development of the device and take it forward. So that's also exciting. We're looking forward to seeing the results of that. But yes, you're. This is another example of interfacing with other departments, I think in universities, and we must do more of this from the spinal cord injury perspective.
Speaker 1:
Yes, that's absolutely right. So it's all about collaborative work, isn't it? Trying to bring in the academicians, researchers who are working with basic sciences, linking up with clinicians and other engineers, and all the rest of it, and that really strengthens the whole outcome. So I think that's really exciting and you've given us a very good account of the charity of your priority areas. Essentially, just to summarize the areas in UTIs that you initially started off with, neuropathic pain, the assistive technology and pressure ulcers, touched upon some of these psychological bits and you told us about how it is to apply for the grants, who's able to apply and the timeframe.
Speaker 1:
You're very realistic in saying that it takes up to a year. There's no point saying I'll get it down in two or three months, but you follow a very due process. You know, because it's all about funding and money has got to be chosen where it goes and I think you've got a very robust mechanism to identify the correct areas, whether you're giving it for the right purpose and to the right group of people, and what it is going to bring out is it going to reach out to the right kind of people. So I think it really has been a great account of your wonderful work, Nigel, and it's such a pleasure to know that such great work is happening, and this is a great opportunity to highlight that to whoever has been listening. And just as we bring this to a close, is there any take home messages you have for the listeners?
Speaker 2:
I think we've covered. The main take home message really is that the researchers, particularly academic researchers and indeed even clinical researchers, have to be careful not to pursue their own favorite topic, their own hobby horse almost, if you like, following their own interests and perhaps the interests of their parent department, but really ask what matters most of all to those with spinal cord injury. Ask those with the spinal cord injury, but don't forget to ask their carers, their relatives and the people that look after them, the therapists and others, on a day to day basis, because you know they all have really good ideas and they know the little questions that can grow into big questions that need to be answered.
Speaker 1:
That's a perfect ending, nigel. I mean just reminds me of a quote nothing about us without us, and I think that's always to be remembered in when we deal with people who have had a life changing injury. And it's such, a such an important aspect and I've certainly gained quite a lot talking to you about this and, and also as chair of the National UK Research Network, and I think we have got great opportunities to work together to develop, you know, use that as a platform to to open up more multi center studies, which is one of the objectives of the charity, and perhaps take it international, for the upcoming is cost meeting. There are several areas that are of common interest that we can take it up to the international meetings and involve more researchers from across the world. So that's been a fantastic discussion with you, nigel. I certainly enjoyed it and thank you very much for your time.
Speaker 2:
And thank you very much indeed for inviting me. I've very much enjoyed talking to you, thank you.
Speaker 1:
We hope you all enjoyed listening to this episode of spinal cord injury care what really matters as Nigel ended it really what matters to our patients. Your passion should be taken further to actually translate to what really matters for people with spinal cord injury, and I hope you will all go back with the information that we have shared through this podcast and feel free to contact the StokeMandible spinal research charity to continue your passion and to help people with spinal cord injury. Thank you very much for listening.
