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How to Prescribe and De-prescribe Safely

This edition of Airing Pain was prompted by the 2022 NICE Guidelines which follows a Public Health England report (2019) looking at medicines associated with dependence and withdrawal. This new legislation follows increased concerns in high levels of prescribing.

This edition discusses the challenges and opportunities of de-prescribing; and poses a shift in focus towards supported self-management and de-medicalising the management of pain for some patients. By this we mean the exploration of alternative therapies and supported self-care customised to individual needs, which come hand-in-hand with any de-prescribing of medicines.

We discuss the incredibly important role of the advanced pharmacist practitioner in adjusting the prescriptions of medicine, and the long-term regular use of pharmacists for these purposes.

Contributors:
Dr Emma Davies
, Advanced Pharmacist Practitioner specialising in Pain Management

Dr Keith Mitchell, Consultant in Pain Medicine at the Royal Cornwall Hospital

Dr Jim Huddy, GP and Clinical Lead for Chronic Pain

Special Thanks

This edition of Airing Pain was possible thanks to support from the British Pain Society.

Time Stamps:
0:49
– Paul introducing the topic NICE Guidelines 2022, following from a Public Health England report 2019 looking at medicines associated with dependence and withdrawal.

1:38 – Introducing Dr Emma Davies; advanced pharmacist practitioner in pain management, Co-Founder to Living Well With Pain, prescribing for chronic pain, and involved in setting NICE guidelines.

2:46 – Discussing risk-benefit of prescribing an increasing dose of pain management medicines.

6:23 – The problem: knowing the medicines may be harmful but a lack of correct support in place for other ways of living with pain. Reducing this type of medicine must come hand-in-hand with proper support to living well with pain.

7:24 – What does support look like? Alternative therapies and support based on their personalised circumstances.

9:15 – Talk from the Patient Group at the British Pain Society on intersectional problems and barriers to accessing care particularly for socially minoritized individuals and groups.

9:58 – The importance of personalised pain management and how to address this from the perspective of a Pharmacist Practitioner

12:00 – Discussion of possible criticisms of NICE Guidelines

13:28 – Introducing the educational resources Pain Consultants Dr Keith Mitchell and Dr Jim Huddy, at Royal Cornwall Hospital, have put together for prescribers.

14:12 – Introducing Dr Frances Cole’s 10 footstep model to pain management as another possible alternative to prescribing.

15:10 – Personalised care for each patient and supported self-management.

16:26 – Social prescribers and upskilling non-clinicians to provide the support needed towards de-medicalising the management of pain for some cases.

17:27 – Discussion on how to pose non-medical supported self-management to patients, in place of medicalised support. 

17:49 – Explaining the Pain Café in Cornwall; the benefit of belonging to a peer group outside of typically medicalised spaces, and the power of sharing challenges and experiences in a common location or setting. 

20:00 – Invitation to leave feedback.

20:45 – Advanced pharmacist practitioner, Dr Emma Davis, on the diverse and essential roles pharmacists play in pain management.

21:40 – Introducing the ‘medication review’.

24:18 – Exploring the concept of reaching the limit of helpfulness with multiple cross-over medicines. Thinking about making small reductions in prescribing.

25:52 – Dependence forming medicines as part of the structured medical review, in England.

28:48 – The ‘healing power of a good book’: escapism techniques.

More Information:

Referenced Edition 123: Dr Jim Huddy Royal Cornwall Hospital, in ‘Opioids and Chronic Pain’

The Pain Café in Cornwall

Imagine If – Social Prescribing Team

NICE Guidelines (2022) ‘Medicines associated with dependence or withdrawal symptoms’

Living Well with Pain – Ten Footsteps Programme

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How to prescribe and de-prescribe safely

First broadcast 7 June 2023

If you would rather listen to the podcast and watch subtitles, take a look at our Youtube video.

Jim Huddy (GP from Cornwall): There are plenty of people out there that do need doctors, they do need medications, they do need specialists and that’s absolutely fine. We don’t want to interfere with that, but there’s also plenty of people out there, that probably don’t need the medical machine, but haven’t had an alternative to the medical machine. Those people, we think, can be in a better, more wholesome, and safer place with non-clinicians.

Paul Evans (Pain Concern): And that from a clinician, intriguing, we’ll see. The NICE guidelines for safe prescribing and withdrawal of dependence-forming medicines were published in April 2022. They followed on from a Public Health England report in 2019 that looked at five groups of medicines that are associated with dependence and problems with withdrawal. Those groups are:

  • opioids
  • Z drugs, which are used to help people sleep
  • benzodiazepines
  • antidepressants which don’t actually cause dependence, but can be problematic for people to come off, and
  • gabapentinoids, now that gabapentin and pregabalin had already been reclassified to come under controlled drug legislation.

This led to concern in the pain community that it would have a detrimental impact for people relying on them to live better with their pain.

Doctor Emma Davies is an advanced pharmacist practitioner in pain management, she was involved in setting those NICE Guidelines and was co-founder to Living well with pain, prescribing for chronic pain.

Emma Davies: The scheduling of gabapentinoids was brought in ostensibly because of the concerns around misuse of those particular drugs, and there’s also been quite a significant increase in deaths associated with those medicines. Now we know that drug related deaths are not particularly associated with drugs which have been prescribed to the people who unfortunately die. The vast majority of drug related deaths are connected to substance misuse and poly-substance use. People will be using multiple different drugs, but we know that gabapentinoids are forming a larger and larger portion of those deaths now, and that was why that legislation was brought in. There was a concern that with very high levels of prescribing, we were seeing a portion being diverted and then leading to illicit use. I think for people using those medicines on prescription where they are demonstrating benefit, there should never have really been any threat to withdraw medicines from those people.

It is really important, as with all medicines, that they are regularly reviewed and that where they are not actually helping people to do more; or they’re not helping to reduce their pain; or where they are causing more problems than they’re solving for any individual, that there should be a conversation between the prescriber and patient about where that risk benefit lies, and is there some value to that person in trying to, very slowly, reduce those medicines. But that should be seen as really as a separate issue I think to the legislation side of things.

Evans: One of the issues is that people prescribe certain drugs, opioids and other drugs, the dose will go up and up and up, and they’re still with pain. So the question to the patient is, if you’re taking all these, and you’re still in pain, then, the drugs you’re taking aren’t working, we should come off them?

Davies: Yes, that would be the advice now. I think 20-30 years ago we assumed that these medicines would be helpful for the vast majority of people and that’s why we saw such a change, I suppose, in prescribing and particularly around opioids. We know that opioids are very good for acute pain and end of life, and so an assumption was made that pain is pain, and so people living with long-term pain would also derive benefit from opioids. And of course, as time has gone on, what has come to light is that for many people living with longterm pain conditions, those medicines just are not helpful. They don’t reduce their pain over time and the adverse effects of those medicines can prevent the person from living a good
life even with pain, and the same with gabapentinoids, that we understand now they are quite limited in terms of benefit.

So, where somebody isn’t showing benefit from having those medicines, and experiencing side effects, which we now understand much more, and which often manifest in similar ways to the condition that people are living with, we have a very confusing picture. But on a very basic level, if you’re taking medicines and you’ve taken them for, say, three to six months and your pain is no better and you’re not doing any more, then probably those medicines are not going to work for you and no further increases are going to be of benefit. On the other hand, they might cause substantial harm, and in those cases working with the prescribers to just slowly reduce one medicine at a time, not necessarily stopping altogether, may perhaps get you into a safer zone. So, we find a balance that starts to give some benefit without causing the level of harm that we would be concerned about. That would be generally better
for overall health and well-being, and that’s the approach that we would encourage. I certainly don’t advocate not offering medicines to people. Very often medicines form a relatively small part of management, but it can be a really vitally important part. If they do help to reduce pain, it allows people to take control of other aspects of their life to increase their movement for example, maybe to stay in work, to continue to socialize and do things that they enjoy doing. Where that is the case, we certainly shouldn’t be taking medicines away. But what we want to prevent is causing harm by either continuing medicines which aren’t helping or by just continually increasing doses into harmful ranges where we know people you know will suffer, possibly more than they would do if they were living with pain.
But that has to come hand in hand with making other support available to people, and I think one of the big problems that we have is we know the medicines are harmful and we know we have lots of people where they’re just simply not effective. But we don’t have perhaps the right support in place to give those people other ways of living effectively with their pain, so simply taking medicines away without replacing it with that support is what concerns me. I think a lot of people within pain management, people with pain and practitioners too, know that reducing medicines has to go hand in hand with support to find other ways to live well with pain.

Evans: So, just pulling the carpet away from people is wrong. What sort of things could you put in their place once you’ve reduced those medicines?

Davies: So, I think the first thing to say is there might occasionally be situations where there is such overt harm being caused to somebody, that there is some degree of urgency to make that person safe and so reducing medicine sometimes may have to be in the absence of putting the other support in place. But that should be a rarity. What we should be doing is looking at supported self-management and access to other therapies. That could be physiotherapy, occupational therapy, or movements of some sort that the person enjoys. Also, we should be supporting people to understand their pain better, to make sense of it
based on their own personal experience. So, not just a generic, ‘this is what pain is’, but ‘this is what pain is, and this is how it sits in your context’.

The most important thing normally is to support people to understand their pain and then to find ways that work for them, and that’s looking at what matters to that individual. So, what are the things in their life that they want to be able to do more of; what brings them joy; what do they want to spend their time doing and what support do they need to move towards that. For many people, it’s just encouragement – other people to speak to. Peer support groups are vitally important for that. I think sharing experience is often at least as important as having mindful practitioners to speak to.

I think learning from other people’s experience is really important, and those are the sorts of things that at the moment lots of people find very difficult to access. There was a good talk yesterday from the patient group here at the BPS about intersectional problems as well and differences in in accessing care. So, we know that certain ethnic minorities, for example, have great difficulty accessing healthcare services of any type, and we know that certainly in pain there’s large differences in cultural approaches to pain and how pain sits within a certain culture, that can then become a barrier to people accessing support as well. So, there’s a lot of work to do looking across a range of different ways that we make support more available and also increase conversations around pain. To normalize pain a little bit more, I think.

Evans: We’re at the British Pain Society Annual Scientific Meeting 2022, and from people I’ve been talking to, there seems to be a thread running through it and that thread is personalized pain management. We’re all different and different things work on different people. So, how do you as a pharmacist get around those things, I mean, you know, what is the answer?

Davies: I think it is very difficult, but what I do as a practitioner is listen to the people that come to see me and I think that’s the most important thing that any person working professionally with people with pain should do. So, that question of what matters to you is such an important question to ask, because that is going to be very different for every single person coming in. So, our approach after that has got to be focused on those things that matter to that person and how do we support them to move in that direction. I feel my job as a practitioner has changed over the years. I’ve been working in pain management for about 17 years now and I think when I started out the onus, I suppose, was on the practitioners to be telling the patients, what they needed to do. My approach has changed quite dramatically and I now see myself more in a coaching role, so I’m not here to rescue that person, I’m here
to support them to work it out for themselves. What are the things that they want to be able to do, how do they see things changing for them. It’s only once you’ve had that conversation that you can start to plan what needs to be put in place from my perspective, to help with that, and sometimes it will be medicines, and other times it will be something else. It could be having help working out their finances, for example.

So, those early conversations are absolutely the most important thing I think, it’s one of the problems I guess, with guidelines. So, it’s one of the problems with all NICE guidelines is we talk a lot in NICE guidelines about Individualized care, but how we actually put that in place in practice can be very difficult within the confines that we have to work with, and similarly, sometimes NICE guidelines get criticised for not being directive enough. But if we are individualizing care, you can’t then provide an A,B,C,D, of what you should do because that isn’t going to be the same for everyone. That is not individualized care, so NICE guidelines are very often left to interpretation, and often I find it’s not the guideline so much as the interpretation.

Evans: Or the headline?

Davies: Or the headline that comes out – absolutely! Sometimes the headline sounds really quite terrifying, and I think that’s what led to a lot of the upset, particularly around the chronic pain guideline. The headlines that came from that did not really bear a huge resemblance to the content of the guideline. We have heard of some instances where the interpretation of the guideline in practice, unfortunately, would make members of the NICE committee quite horrified, because that certainly wasn’t how the guideline was intended to be used. We’ve heard about people having medicines stopped. If you actually read the guideline, there’s nothing in the guideline that suggests that that should ever happen.

Evans: That’s Dr Emma Davies, advanced pharmacist practitioner in pain management. Back in 2019, I spoke to Dr Jim Huddy, a GP in Cornwall, about an innovative approach to reducing the high levels of opioids some patients were taking, which would lead to, in his words, higher levels of misery. That’s Airing Pain, edition 123, still available to download from Pain Concern’s website which is: painconcern.org.uk. Since then, he and pain consultant at the Royal Cornwall Hospital, Dr Keith Mitchell, have put together educational resources for prescribers on how to prescribe, and how to de-prescribe safely.

Jim Huddy: A very common question for us from prescribers is that, if I don’t prescribe, what do I do? There’s plenty that can be done, but prescribers aren’t very aware of what can be done. So, we’ve just started a five-year plan to make people more aware of them and make them more available.

Evans: So, what are the alternatives?

Huddy: Well, the model that we are following is Dr Francis Cole’s 10 footstep model. Francis is a retired GP and her life’s work has been to do with the self-management of chronic pain, and she’s distilled her work down to these 10 footsteps, and what that means is that if you research and analyse the things that patients need when they’re in long-term pain. They are things like being more active, sleeping better, understanding what pain is and what it isn’t, acceptance, goal setting, pacing yourself, jobs, relationships. So, what we are aiming towards is having those important patient outcomes available for people to kind of pick and choose as they wish, so it certainly ticks the personalized care box in the respect that one
patient might need lots of footsteps 4,5 and 6. But another patient might need footsteps 8, 9 and 10, and we’re hoping that if this five year plan goes well, that they’ll be able to find access to their particular footstep of interest in their locality, close to home, and live a better life. That’s the hope.

Evans: This sounds like supported self-management. Supported Self-management is not you as a GP saying alright, you’re on your own, it’s how you help that person to self manage?

Huddy: Exactly, and we’re aiming for a time when in fact, it’s not medics who do this, because you know as well as I do that, GP’s and medics in all spheres are completely maxed out at the moment. They don’t have capacity to spend time with people who’ve got sometimes very challenging lives, and that does take time to gain trust and give the support that you describe. So, in our core team, we’ve got two social prescribers, Nikki and Kevin, who run the community interest company called Imagine if, which provides social prescribers to our primary care network and another one close by. And so what we are aiming towards is upskilling non-clinicians into giving the support that people need and thereby achieving de-medicalisation of chronic pain for those who can de-medicalise. There are plenty of people out there that do need doctors, they do need medications, they do need specialists and that’s absolutely fine. We don’t want to interfere with that. But there’s also plenty of people out there that probably don’t need the medical machine but haven’t had an alternative to the medical machine. So, those people we think can be in a better, more wholesome and safer place with non-clinicians.

Evans: How do you get that over to a patient? He or she might want drugs because they think that drugs are the way forward. How do you get over to somebody who’s in that frame of mind that, well, actually, gardening through social prescribing or exercise will do more than the medication?

Huddy: Well, we’ve formed what we’re calling a ‘Pain Café’ in Perranporth in Cornwall. So that’s my GP surgery. Our social prescribers run virtual events, so an online Teams or Zoom meeting every six weeks or so, and the idea of this is that patients dial in electronically to a one-and-a-half or a two-hour session. The idea is this to be a non-clinically led group by our social prescribers and Sean Jennings, who’s our expert patient, and we invite patients to dial into this online meeting where they can talk about their own experience and understand each other’s experience. This is this is under the realm of peer support. But I think what’s really powerful about this approach, and we’re going to hopefully replicate this throughout Cornwall, is that rather than a peer group which is based at the local hospital, which might be forty miles away from where you live, this is a peer group of people that live in the same village or town as yourself. They’ve got a WhatsApp group. I sent them a photo this morning, actually showing them that I’m at the British Pain Society and everyone’s really interested in what the group is doing and we’re finding that they’re arranging to go for a walk on the beach together or have a coffee with each other and the power of peer support is knowing that there’s people around who are sharing the same problems and challenges that you’ve got in your life and that’s very helpful and powerful to people to know that they’re not on their own. It’s a very non-threatening zone where people can come, and we try and arrange speakers each time we have a meeting. So, the next meeting, we’re going to concentrate on Footstep five, which is about moving more or activity or exercise or whatever you want to call it. So, we’re going get our activity specialist, Jamie, to come and talk to the group and explain, even if they can’t do much activity, how they can do a bit more and get a bit fitter.

Evans: Dr Jim Huddy. Earlier we heard from advanced pharmacist practitioner in pain management, Dr Emma Davies. Now, it’s my shame I didn’t know until speaking with her about the diverse and essential roles pharmacists have in pain management. After all, doctors prescribe and pharmacists hand the medicines over the counter. Don’t they? Davies: There are huge array of pharmacists working in lots of different specialty areas who people do not know about. So, most people, when they think of pharmacists, they think of a community pharmacist working in a shop, dispensing medicines and offering advice around acute illnesses and minor illnesses. But pharmacists have a wide array of roles across all sectors of healthcare. I think people are probably becoming much more familiar with seeing a GP-based pharmacist. So, pharmacists are doing a lot of the medication reviews in practices now, and consequently, are starting to take on that medication review of those more complex medicines such as opioids and gabapentinoids. A lot more pharmacists are therefore working much more closely with people with pain. So, it is a burgeoning area of pharmacist development at the moment.

Evans: Explain to me what a medicines review is and how important it is.

Davies: Medication review should really be an ongoing process for lots of people. They might be more familiar with perhaps being called in once a year by their practice, or maybe having a phone call over the last couple of years, often from the practice pharmacist, but sometimes it’s the GP, or practice nurse. The idea of medication review really is to go through all the medicines that you might be taking for any condition and just checking that firstly, you understand why you’re taking it, that you understand the doses that you’re taking and checking that that you are taking the prescribed dose. We check for any problems that you’re encountering, such as side effects, or other problems that you’re experiencing that
you might not realise are a result of your medicines, and also checking to make sure that that medicine is still needed. So, that’s particularly pertinent in pain I think. So that is an opportunity, if you are taking medicines, to raise the fact that you still have pain or that your pain has improved actually and maybe you want to think about reducing your medicines. Perhaps something was working, but no longer seems to be working as well and it’s an opportunity to see, whether there is room to make a dose alteration or is there
something else that could be offered, such as another medicine, an alternative therapy, or an appropriate referral or other support from somewhere else.

Evans: And it could be, especially as we get older and I include myself in that, and for people with chronic pain that different medicines are prescribed at different points. So, you could be stacking up medicines over and over again, you know, I’m constipated, right well we’ll give you a medicine for that. I can’t sleep, right, we’ll give you a medicine for that. A pharmacist could look at that and say, well, actually this prescription is doing that, that is doing something else. If we took out that, or juggled those around, we’d stop the conflicting problems with it, and a pharmacist can do that?

Davies: Absolutely, that is such an important role for pharmacists. So, internationally pharmacists are recognised as being medicines experts and we are the only profession who have specific training and education around medicines and how they fit with disease management.

And you’re absolutely right that very often people end up on, say, six medicines for conditions and another six medicines to manage the side effects of the first six, and as you say, sometimes when you see different specialists, they focus on their particular area. So, you might see a cardiologist, they just look at your cardiac drugs, you see the pain specialists, they just look at the analgesics and they don’t perhaps always know or understand how those medicines work with each other or against each other in lots of cases. But that is the pharmacist’s job to unpick that with the patient. So by having a really good
conversation about how the person is, how they’re managing symptoms, the pharmacist should be able to work backwards to the medicines and work out are any of these problems being described actually caused by the medicines. In the case of pain, have we actually reached the limit of the helpfulness of these medicines, and they’re now starting to crossover and become unhelpful for this person, and that’s where we might have conversations then about, is it worth thinking about making some small reductions to your medicines to see if some of these problems are alleviated, pharmacists are absolutely brilliant for having those conversations, and that’s a big part of the job now.

In England they’ve introduced structured medication reviews, and one of the topics is dependence forming medicines. So that does become an opportunity for people living with pain, who perhaps have been on medicines, such as opioids or gabapentinoids for some time, to actually have a really good, thorough review of those medicines and perhaps work with the pharmacist to make some changes to see if things can be improved for them. We have similar schemes in Scotland, Northern Ireland and Wales, and also I think it’s important for people to realize that this isn’t a one off thing, so the medication review might highlight several things which need to be discussed or where changes need to be made, but those changes need to be made in a way that’s manageable for the individual, so it’s absolutely not about stopping everything. It’s not about getting people off by next Friday. It’s about working with the person and adapting and making small changes over possibly long period of time to get that individual into a better place overall.

Evans: So, the message has to be, use your pharmacist, go for your medicines review, it’s
free and you should do it regularly?

Davies: So, most people on long-term medicines should be offered a yearly medication review through their GP practice. Community pharmacists also have the facility to do some medication reviews, but of course if you have any problems with your medicines and you’re just not sure who to ask, your community pharmacist is always a really good first place to go to, and as you say, they’re a free service. You just turn up and they see you, no appointment necessary, and it’s the beauty of community pharmacists and why we really need to value them, and there’s a number of schemes now to increase the knowledge and skills and confidence of community pharmacists to support people living with pain. It could be someone with an acute pain that’s come on over the weekend, who pops into their community
pharmacy during the week to get some advice, or people on long- term medicines. So there’s a lot of work between GP practices, medicines management units, clinical commissioning groups and community pharmacists to try to increase the opportunity for people to have those discussions about their medicines in whatever setting suits them best.

Evans: Pharmacist Dr Emma Davies. As in every edition of Airing Pain, I’d like to remind you of the small print that whilst we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound based on the best judgments available, you should always consult your health professional on any matter relating to your health and well-being.


Peer Support. Join the community

“Having chronic pain is very lonely.”

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2023 marks the 39th year of Volunteers’ Week (1-7 June), and Pain Concern joins thousands of charities and voluntary organisations in recognising the contribution volunteers make across the UK.

Celebrate and Inspire

With this year’s theme of ‘Celebrate and Inspire’ we hope to encourage people to be the change that we want to see and get involved in volunteering in whatever way works for them. 

The contribution of volunteers is often unseen and unrecognised by many, visible only through the incredible impact of their volunteering, so taking the time during Volunteers’ Week to celebrate their efforts and all they contribute to our local communities, the voluntary sector and society as a whole has never been more important. 

Pain Concern’s celebrations

This Volunteers’ Week Pain Concern will be celebrating our 50+ volunteers by holding volunteer social meets online and in person, sharing volunteers’ stories and attending a community event.  

‘We are so very fortunate to have the support of our volunteers, many of whom have been with us for a number of years.  Thanks to each and everyone of them, over 90,000 people each year with chronic pain have benefited from our resources, including leaflets, podcasts, transcripts, magazines, social media posts and website analytics. Not to mention our Helpline volunteers, who provide emotional support and a listening ear to all our Helpline service users, who very much value this service.  Thank You, Thank You, Thank You!!! You really are amazing!’

Sam Mason, People, Project & Operations Manager. 

The Volunteer Experience

This Volunteers’ Week we’ve asked for a few of them to tell us about how they find volunteering at the charity: 

Tim Atkinson looks towards the camera.
Tim, Pain Concern Volunteer

Being a Volunteer Listener & Reader Panel Member

I help Pain Concern continue to produce high-quality content of all kinds both for people living with pain, their carers, and the health professionals involved in treatment and pain management. I also contribute to both the Flippin’ Pain community outreach campaign, and the Live Well With Pain training programme. All three allow me to help continue the conversation about pain management, communicating directly with both patients and clinicians about what my own experience of chronic pain means and what I’ve learnt.

The benefits, in terms of the importance of being able to talk and learn about pain and pain self-management, are huge. I get great satisfaction knowing that some small part of what I do might help someone, somewhere, as well as contribute to the wider discussion. And I benefit personally from keeping abreast of new developments and encountering new ideas and approaches. I’d recommend it to anybody. ’

Tim A, Listener & Reader Panel Member

Transcribing for good

‘I am a volunteer transcriber with Pain Concern. I have been in this role for about two and half years now. I decided to apply to be a volunteer with Pain Concern due to my own experience with managing pain, and I have an interest in transcribing and so I thought I could learn how to transcribe under the guidance of other transcribers and contribute something positive to a great charity.

I have very much enjoyed my time volunteering and learnt new skills along the way, and worked with some warm and kind people, so I would certainly recommend volunteering without any hesitation.’

Owen, Transcriber

The experience of a Helpline Volunteer

Fiona, Helpline Volunteer

‘I started training in 2022 after feeling unfulfilled in my paid employment. I had a 21 year career as a registered nurse and left due to health reasons but always missed the interaction with different people and the feeling of satisfaction when I’d been able to make a difference to someone.  

Later I volunteered for another charity, teaching nursing and medical students about my own experience of persistent pain. I found this so rewarding but I felt like I wanted to make a direct impact on people suffering with chronic pain. 

The thing I enjoy most about volunteering at Pain Concern is being there for callers who are often desperate for someone to listen and many times it’s the first time they’ve felt heard and understood. Personally I have contacted Pain Concern in the past and found it to be an amazing source of support. 

I found that the training I received has benefitted me enormously in terms of learning lots of new skills, in particular IT which I’m still getting to grips with! But mostly it has given me so much confidence in being able to deal with whatever comes my way. 

I would 100% recommend volunteering to anyone who has a spare few hours to give. I’d say just think about what your interests are and go for it. There are so many opportunities and you will be so appreciated. You’ll also be supported throughout your volunteer journey and you’ll meet lots of really nice people too!’ 

Fiona B, Helpline Volunteer

Volunteering at an event

‘Having the chance to volunteer at the British Pain Society Annual Scientific Meeting (ASM) was such a fruitful experience for me. Surrounded by thought-leaders paving the way for new therapies and techniques for pain management, and being able to directly hear them talk and interact with them about their research was an eye-opening, thought-provoking, and positive experience. I knew our podcast was delivering great things to our various audiences but witnessing the inception point of that, at somewhere as exciting as the British Pain Society ASM, was truly inspiring. I learned so much working alongside the amazing Broadcast Team and the members of Pain Concern who pulled together and engaged so many great contributors to make it happen.’

Amy J, Broadcast Assistant 

A Research Assistant’s view

‘My name is Katie, I’m 24 years old and I am a Research Assistant and Helpline Volunteer for Pain Concern. I have been volunteering with Pain Concern for a year and 4 months and decided to start volunteering after completing my Master’s dissertation on pain management amongst people with Endometriosis. This research really helped me to understand the difficulties people in pain face when trying to get support with their pain management and I wanted to be able to help in any way I could.

I have really enjoyed my time volunteering and being able to provide people with access to different types of support that they may not have tried before and being part of a range of projects supporting people on waiting lists has made me see that I can really help to make a difference.

My volunteering has also given me the opportunity to improve my communication skills and gain valuable experience working directly with service users which has been really beneficial when looking for jobs. The support I have received from Pain Concern throughout my time has been amazing, there is always someone to ask if you are unsure of anything, if you ever need someone to talk to and they help me in any way they can towards my career aspirations.

I would highly recommend volunteering to everyone, it has been a great way to help others while improving my own skills and abilities and even if it is only a small amount of time that you can give, it will make a difference to so many people.’

Katie, Research Assistant and Helpline Volunteer

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A headshot of Dr Mick Serpell.

Dr Mick Serpell, Consultant in Anaesthesia & Pain Medicine for Greater Glasgow & Clyde NHS

Let me explain, I work with patients who have chronic pain. My journey as a novice in the triathlon world required me to make changes in my beliefs and behaviours.

Changes very similar to those required by patients with chronic pain, who wish to regain some form of ‘normal’ life after all available treatments have been tried and failed. This rehabilitation is usually done through a process called a ‘pain management program’

It all started with my first ever triathlon event, just off Oban in August 2013. The ‘Craggy Island’ triathlon involves a small swim (550m) from the mainland to Kerrera Island, then a 14K mountain bike ride, followed by an 8K cross-country hill run. The short swim distance was what attracted me, as I could not swim more than two lengths of a pool without gasping for air. Swim training started six weeks before race day. Slowly I built up my tolerance to twenty-two pool lengths. I was ready, right?

Wrong! A sea swim is completely different from a pool swim. Cold and choppy is the water, and you can’t see what lurks below! It was a memorable introduction for me to the world of open triathlon – nearly drowning on three occasions.

However, I made it to shore and crawled into the transition area for the bike phase. As I warmed up and established a rhythm in the running section, I clawed my way up (literally on some of those hills!) to finish in just over 2 hours.

Contemplation

I had survived! Feelings of immense satisfaction and disbelief hit me at the same time. And, rather strangely, I had enjoyed myself. If I were to do this again, though, I would need to be much, much better prepared .

Making plans

Over the next two months I pondered. I read a book on triathlon training (Be Iron Fit by Don Fink), focusing particularly on time management (Preparation). Could I devote the time required? I decided to bite the bullet and booked a triathlon event as late in the 2014 season as possible (Goal setting) in order to avoid starting the 30-week training programme until well after the Christmas holidays – I enjoy my food and drink a little too much (Boom and bust).

Training

Training started in January 2014 with the ‘5K challenge’, which a group of friends were doing after the festive indulgences (Action). The challenge is to run 5K every day for the whole of the month. It is a real test of commitment to do it every single day, for 31 consecutive days, especially during that dark and miserable month. On some days the run was done at 4 AM before going to the airport or at 11:30 PM after a busy day on call. But I completed the challenge and knew then that the task was possible.

Goals

I had never intended to do a full Ironman. I booked it as there was no other triathlon event late enough in the season that didn’t clash with holiday or business trips. I naïvely thought that doing the training for a full Ironman couldn’t be much more effort than training for a half! My 30-week schedule factored in practice events such as a Standard (Olympic) distance triathlon. These revealed my weaknesses (fitness, technique and equipment) and gave me specific areas to focus on (how to fix a flat tyre mid-race, how not to forget to bring a wetsuit and have to borrow one two sizes too small!). Completing these events also gave me confidence that the big race was achievable.

Taking Part in Ironman Wales

Sea swim (2.4 miles), bike ride (112 miles) and marathon (26 miles) all in one day!

So the big day finally arrived, much quicker than expected. I would like to share what I think are two important lessons from my Iron Man.

Lesson 1 – Preparation

The closer I got to the event, the more I realized that mental preparation was absolutely essential before the race. So, I drove down straight from work (4 hours sleep in Cardiff) to arrive in Tenby on the Friday morning for the first practice swim.

There was a sea swell of up to two feet. I spent the next two mornings just getting familiar with the conditions. Thanks to my practice sessions in Scottish waters, cold water temperature was not an issue. On race day (Sunday) the swell did not look so bad when we started at 7 AM. It soon picked up – many were seasick and vomiting, over a hundred swimmers were pulled out and the swim stage was very nearly cancelled.

I was not ignorant of these facts as I was either being tossed up in the air by waves or buried under them in an avalanche of water. I didn’t try to fight the conditions; I was relaxed and calm and accepted them (mindfulness). The next day in my hotel, I met a seasoned Ironman who said he had never experienced such rough waves and did not finish the swim. I strongly believe that without those two preparation days, I would not be writing this story in quite the same way.

Lesson 2 – ‘Pace and Graze’

This is common knowledge amongst competitors, but putting it into practice can be difficult. The temptation is to fire off and chase the others in the bike section. If you do, then it’s more than likely you will hit the ‘wall’ towards the end, as you may not have enough fuel in the tank. The bike section is where you do most of your eating and drinking because it’s harder whilst running.

Usually, it is a matter of getting into a steady bike pace and start consuming! But, after THAT SWIM, the nausea put paid to oral intake for nearly an hour. It is hard holding back on the pace, but it returns dividends later when you can gradually increase momentum and reel in those riders who went off too soon.

To the end

To reach the marathon section was a relief – barring an accident, I would complete. I knew that I could jog, shuffle, walk or even crawl a full marathon if I had to. I ran the first 10K, then did a mix of walking uphill and shuffling on the flats and downhill. All the while the enthusiastic crowds lining the streets kept us all going. Their encouragement and genuine support was immense. It can never be overstated just how much it means to have people recognize and acknowledge the pain and effort you are struggling with.

Summing Up

After completion those same feelings of immense satisfaction and disbelief which I had experienced at Craggy Island hit me again. Tenby was a fantastic experience, which I will remember forever, and one that I would recommend everyone to try. I will definitely repeat it again, but for now I’m enjoying the rest. This is a luxury that pain patients don’t have. Will I relapse? Who knows? I’m only human. But I have a program, which I can now follow. It’s up to me and it’s my choice whether I reach termination.

If you would like to find out more about raising money for Pain Concern (not necessarily involving extreme physical exertion!), visit our fundraising page.

This is an excerpt from Pain Matters 61

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Pain Concern presented the poster ‘Impact of a Patient-led Helpline on NHS Services‘ at the British Pain Society Annual Scientific Meeting 2023.

Read below, or download the poster.

The poster was created by Dr. Martin Dunbar, Dr. Cathy Price and Pain Concern’s People, Project and Operations Manager Sam Mason.

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From 7 – 12 May, a group of cyclists travelled in and around the north-east of England, sharing the latest understanding of pain science and management with the people who could benefit the most.

The group behind this feat is Flippin’ Pain, a public health campaign that aims to help people change the way they think about, talk about and treat persistent pain for the better.

Pain education awareness tour

In six days, the team visited eight different communities, holding their trademark ‘Pain: Do You Get It?’ public talks, delivering workshops for local healthcare professionals, and engaging passers-by with the ‘Brain Bus Experience’:  their interactive science lab on wheels.

Final sum raised

The team of 25 cyclists were raising awareness of the tour by completing a week-long peloton. After battling rain and a lot of hills, the team reached their goal of over 180 miles (and more than 10,500 ft of hills!) and raised over £6000 for Pain Concern.

A huge thank you to everyone who took part or donated.

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This edition of Airing Pain platforms four internationally recognised clinicians from the British Pain Society Annual Scientific Meeting 2022. 

Pain management: What’s around the corner?

Recently healthcare technology and innovation has seen a rapid acceleration, particularly following disruption caused by the Covid 19 pandemic. In this edition we look around the corner and examine the most current technological advances for pain therapy, especially those that can be used with or even in replacement of conventional medical treatments. 

The Airing Pain team attended the British Pain Society ASM in 2022, to listen and interview top thought-leaders on pain technology advancements and the projects they are working on. Hear them introduce their specialist areas of: new scientific evidence for fibromyalgia; neuropathic pain in the form of phantom limb and post-surgery back pain; and cutting-edge developments in neuromodulation techniques, specifically non-invasive Virtual Reality and Gaming for treating neurological distortions. 

Contributors: 

  • Dr Stephen Ward, Chair of Scientific Committee, St Thomas Hospital London 
  • Dr Simon Thomson, Consultant, Pain Medicine and Neuromodulation, Mid and South Essex University Hospitals NHS Trust 
  • Dr Owen Williamson, Pain Medicine Specialist, School of Interactive Arts and Technology at Simon Fraser University Vancouver British Columbia 
  • Dr Timothy Deer, Interventional Pain Doctor West Virginia and President of The Spine and Nerve Centers 

Time Stamps: 

0:20 – Introductory quotes of internationally recognised Clinicians from the British Pain Society Annual Scientific Meeting (ASM). 

1:24 – Introduction by Paul Evans to British Pain Society ASM attendance. 

1:58 – Dr Stephen Ward, Chair of Scientific Committee, St Thomas Hospital London, on emerging scientific evidence for the study of Fibromyalgia. 

5:16 – Dr Simon Thomson, Consultant, Pain Medicine and Neuromodulation, Mid and South Essex University Hospitals NHS Trust introducing the basics of neuromodulation and neuropathic pain, using secondary back pain as an example. 

11:10 – Dr Simon Thomson on the process of Spinal Cord stimulation and equipment. 

18:33 – Dr Owen Williamson, Pain Medicine Specialist, School of Interactive Arts and Technology at Simon Fraser University Vancouver British Columbia, on virtual reality (VR) for chronic pain treatment, particularly the uses of VR for painful distortions. 

25:05 – Dr Owen Williamson on his talk titled ‘Modifying the Matrix: Virtual Reality’ at the British Pain Society ASM. 

30:22 – Dr Owen Williamson on potential drawbacks to using VR Therapy. Followed by a discussion of mitigation techniques; artificial intelligence and body sensors for patient-monitoring in virtual environments.  

32:56 – Invitation to fill out our Online Survey.

32:42 – Introducing Dr Timothy Deer, Interventional Pain Doctor West Virginia and President of The Spine and Nerve Centers of the Virginias on the future of personalised management and remote home programming to benefit those living with chronic pain. 

39:08 – Dr Owen Williamson discussing the optimistic yet cautionary future of virtual reality and wider emerging technologies for pain therapy; the importance of preserving empathy as typically found in the doctor-patient relationship. 

Special Thanks:

This edition of Airing Pain was possible thanks to support from the British Pain Society.


More Information:

Airing Pain 61: Deciding Together
Pain Matters 73: Neuropathic Pain Issue
Manage Your Pain leaflet
Chronic Pain and Health Inequalities

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First broadcast 26th April 2023


If you would rather listen to the podcast and watch subtitles, take a look at our Youtube video.

Paul Evans This is Airing Pain, the programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain, our family and supporters, and the health professionals who care for us. I’m Paul Evans, and we’re grateful for the support of the British Pain Society in the making of this edition of Airing Pain.

Dr Simon Thomson It is a very exciting new thing which has got a long way to go and it’s just really a matter of giving hope to people with secondary back pain, so it’s not a primary pain disorder. It really is one of those game changers.

Dr Timothy Deer Doctors who use the same exact device on every patient will be out of the mainstream. You’ll come in, you’ll meet a doctor who’s open-minded and they’ll look at some markers whether it be your imaging, your blood test, your urine biomarkers, with some factors. We’ll look at those and then we’ll get on the table and put the small wire in and the wire will measure your spinal cord and tell us how your spinal cord responds to different types of electrical current. Based on that, we’ll choose to put in a certain device or a certain waveform that day and we’ll have probably a 95% or more predictability, and we’re seeing this already.

Dr Owen Williamson People who have osteoarthritis in their fingers tend to perceive their hands as smaller than they actually are, and if you put them in a virtual environment and stretch the hands so they perceive them as normal, the pain goes away.

Evans: In the spring of 2022, we at Pain Concern attended the British Pain Society’s annual scientific meeting. It’s an event we always like to go to, to hear internationally recognised clinicians and researchers from around the globe exploring and sharing new developments and ground-breaking research in the pain community. And through Airing Pain, we share that with you. Dr Stephen Ward is chair of the Scientific Programme Committee, which sets the agenda of the meeting. He’s a consultant in pain medicine at Saint Thomas’ Hospital in London, which is probably Europe’s largest pain clinic.

Dr Stephen Ward: Pain management is a specialty. It’s pretty small and we only get to see each other probably on this one occasion per year as a group of individuals. You know, a lot of the discussion is not held in the auditorium, it’s afterwards in restaurants and bars and so on, so it’s a chance to catch up, but also education.

Evans: For people with chronic pain, we don’t all know what is going on behind the scenes. I mean, some people with chronic pain, they never get further than their GP practice and can feel very, very isolated

Ward: Of course.

Evans: So, it’s important for people to know that actually all this stuff, all the science, is being talked about seriously.

Ward: Quite so. A great example of that is in fibromyalgia. You know, there’s just reams of stuff out there about latest research and so on. There are some really, really fascinating experiments in the laboratory around fibromyalgia demonstrating that if you take blood samples from humans with fibromyalgia and humans without fibromyalgia and spin the samples down and inject them into, I think, either rats or mice, the mice injected with the serum from fibromyalgic patients developed symptoms akin to fibromyalgia. I mean it’s astonishing, and it implies that fibromyalgia might be some sort of immune disease process. For people out there who have been told, “Well, you know, there’s no cure. There’s no this. There’s no that,” to just know that somebody out there is doing these experiments that in years to come that will lead somewhere. They should know that and so I tell people this in the clinic. But unless they were to come to this meeting and hear about that, you know, it’s not widely reported. It’s not the sort of stuff that gets into the newspapers.

Evans: You talk about fibromyalgia. It’s very pertinent to me because I have fibromyalgia.

Ward: And did you know about this?

Evans: No, I didn’t.

Ward: We all know about it, and it was awarded, I think, the best presentation or best poster presentation at the EFIC meeting a couple of years ago. It was big news. Well, you know now. And I hope you will learn more with the content of this meeting. In the past I think quite a bit of this was the output of laboratory research presented at a meeting, and it was called the annual scientific meeting. You could see over the years numbers drop a little bit. It’s a multidisciplinary society so I don’t think everybody wants to hear about laboratory experiments exclusively. What we try to do as a committee, and certainly personally, is open it up. At any time point in the day you could find something to interest you.

Evans: And there was plenty to interest me. That was Dr Stephen Ward. Well, after that revelation, what else as a person living with pain don’t I know about what’s around the corner? One of the speakers was Dr Simon Thompson. He’s a consultant in pain medicine and neuromodulation with the Mid and South Essex University Hospitals NHS Trust.

Dr Simon Thompson: Neuromodulation is where the nervous system is impacted by electrical stimulation, sometimes light, sometimes targeted chemicals, or sometimes electrical energy in order to modulate or change the activity of neurones within any part of the nervous system for therapeutic good.

Evans: So, neurons, that’s the nervous system, nerves and brain?

Thompson: Yep, so brain, spinal cord, peripheral nerves, autonomic nervous system.

Evans: And modulate, as you said, is to change something.

Thompson: Change the way they are functioning. So, the important thing is it doesn’t destroy them, it’s non-destructive, but it changes the way they function. Usually in the conditions we’re treating they are functioning in an unhelpful way because of the kind of injury that they’ve had, so often it corrects them to normal.

Evans: Chronic pain is defined, if you like, as pain that is there for three months after an initial cause, or perhaps there wasn’t an initial cause. So, something is happening to the nervous system.

Thompson: Really quite specifically, we are treating secondary pain syndromes where there is a cause. As we’ve got better diagnostically and through our understanding over the years, certain conditions which were known as primary, or could have been known as primary, have more of a secondary cause. You know, it wasn’t so long ago that people didn’t understand neuropathic pain, pain due to injury to any part of the nervous system, with pain felt in the body, even though there was nothing physically wrong with the body. But there was something wrong with that part of the nervous system. And so, you can damage the nervous system through infection, for example, like a viral infection, either of the cord like in transverse myelitis or peripherally like in post-herpetic neuralgia, or you can do trauma through surgical wounds, trauma wounds. The most common thing that we treat is people who have herniated discs that have caused nerve root injury. They may or may not have had previous surgery, but they have persistent pain. So, we can follow the route back and understand the cause of the pain.

Evans: So, take me on that journey from the root of the pain, the physical root of the pain, to why it should hurt in the first place.

Thompson: I think the easiest thing is to think of a herniated disc, and people often think of that as a like a washer. It’s not really, it’s like a doughnut where some of the jam has squirted out. That jam, the nucleus pulposus, in health it hardly sees anything of your blood system and importantly your immune system. And so, when it leaks out, it causes an intense local immune reaction. And it’s the inflammation that activates the nerves that are very nearby and that causes a lot of the pain. The physical mass of the material that might squirt out can also cause compression of the nerve, which actually strangely is not necessarily painful on its own but causes a sort of numbness and some tingling. But it’s the inflammatory response that initiates the acute pain. And then as healing occurs overtime, the changes in the nervous system, that whole nervous system from that nerve root through the spinal cord to the brain becomes sensitised. That’s known as central sensitisation, so even if the inflammation dies away, the changes are still there in the nervous system and that is perceived as pain.

Evans: So, the injury, if you like, has gone, but the pain processor is still working. It’s as if your nerves are amplifying something that actually shouldn’t be there. Am I right?

Thompson: It is. I mean, they’ve been changed physically, so there may have been some loss of axons which are, you know, the fibres within nerves. And so, you change that balance. There can be a change in the receptors expressed in that nerve, how nerves communicate with each other. And some people can end up densely numb in their leg, but they’ve still got pain. I mean, the most extreme example is phantom limb pain, where a limb can be removed. You don’t have a limb, but the patient’s brain map tells them that they have got a limb. In fact, they can even wiggle their toes. And sometimes they get awful pain in the phantom limb.

Evans: So, I’m going back to neuromodulation now. How would that be used in, say, the herniated disc?

Thompson: It’s important to realise that with the herniated disc, there isn’t the idea that there would be a type of surgery that in one deft operation could make it much better. But when that possibility has been exhausted, and it may be because the disc has already resolved and there is no surgical target for them to remove anything, or it can be that they’ve had an operation on that disc. They’ve already removed it and they’ve still got pain and furthermore, scar tissue. So, we have a sort of algorithm of care so that these patients are really quite common. It probably happens in about 20% of patients who have their first back surgery that they have continuing pain. Some patients put up with it. Some patients can resolve with medication, sometimes with a targeted injection, but really beyond that it’s spinal cord stimulation. You know, there’s reasons to believe that the kind of relief that you can achieve with spinal cord stimulation is so much better than repeat injections and being on drugs that actually it probably becomes an even better option. But we tend to try a few conservative type of management strategies first and then move on to spinal cord.

Evans: So, what’s involved in spinal cord stimulation?

Thompson: A day case operation in my hands. Local anaesthetic. Some sedation. An epidural placement of the lead and threading the lead up in the epidural space. On table testing with the engineer through the computer to make sure that the stimulation is felt in the right place, or the leads are in the anatomically correct place. And then implanting a pulse generator, which is like a small microcomputer and all under the skin, usually under the skin of the back area.

Evans: Is this a one-off procedure?

Thompson: So, it’s a rechargeable device that I use and that would last 12 years. You might need attention to it for some of the complications that may occur in that 12-year period. And then eventually, like any rechargeable battery, it doesn’t hold its charge and needs replacing.

Evans: Is there a danger that the body becomes used to this?

Thompson: So, tolerance is, or can be, a feature. I always make the distinction between true tolerance because for some people there’s been a progression of their illness. Now we have multiple wave-type devices so that can be quite good because it mixes up things so the nervous system doesn’t get you so used to it. But there’s much less tolerance with spinal cord stimulation than you see, for example, with TENS (transcutaneous electrical nerve stimulation). That’s important to realise. But I don’t take out that many because of loss of effect. And if I do, there’s more likely a sort of technical issue or an upgrading of the system that can deal with it.

Evans: At what stage would somebody with a herniated disc get to you for this operation?

Thompson: If they’ve had a hernia, the tradition has been that patients are treated conservatively. If it’s continuous, or if there are what we call red flags, and red flags are rapidly progressing neurological change, cauda equina syndrome which is loss of bladder and bowel function and saddle anaesthesia, then they go, well, for cauda equina, urgently to A&E for a decompression. If it’s rapid progression of motor problems and unbearable pain, then usually they’re best served by microdiscectomy. When the surgeons have done that and there has been some allowance for recovery, because typically people are improved for two or three months and the recurrence tends to start after about that time. Sometimes that’s after they’ve been discharged from the surgeon. So, sometimes they get sent back to the same surgeon and there’s a danger there because depending on your type of surgeon, they may feel that they can continue to treat this problem with more surgery and, you know, there are people who will treat chronic pain – well, they don’t call it neuropathic pain but leg pain – with a fusion and a further decompression and there is a law of diminishing returns on successful outcome with that. So, always take care before agreeing to revision surgery. I mean, spinal cord stimulation has been an explosion in innovation and we’re learning about new conditions that we can take on with that. But there’s also other types of neurostimulation. So, there’s restorative stimulation of the nerves that supply the core muscles of the low back. Those muscles are the multifidus muscles, and this is a treatment for, if you like, back pain secondary to multifidus muscle dysfunction where it’s not working properly, and that actually is probably the most common cause of back pain. Typically, those patients are treated, you know, with physiotherapy, core muscle exercising, and sometimes acupuncture. Sometimes they go to the pain clinic and they get interventional treatment with medial branch injections of the nerves and then radiofrequency. That can put quite a lot of patients into long-term remission. And if it’s then coupled with functional improvements, they can then reverse some of the changes that have occurred to their multifidus muscle. But quite often that fails and multifidus nerve stimulation seems to be a rather good thing to do. Not only does it relieve pain, but it actually restores the muscle function. So, typically we find once we’ve put a device in, 40 to 50% of patients are improved significantly by one year, but as each year goes by, you get ever increasing numbers improve. And so, by the time you get out to four years, which is where we are now, 80 to 90% of patients are significantly improved. And that’s in patients who’ve had low back pain on an average of 10 to 14 years.

Evans: Just explain to me what we’re talking about now?

Thompson: So, we’re talking about a device. It looks like a spinal cord stimulator. It’s got leads. It looks like that, but the leads are not in the spine, they’re around the bones of the spine. There is a nerve called the multifidus nerve, where we know anatomically where it is and it feeds into that muscle group. And so, when you stimulate it, you can feel the muscles clench. The therapy is, once it’s implanted, to produce pleasant tetanic activation of the nerve. Patients do this twice a day for half an hour, morning and evening lying down, and it wakes up the whole muscle. The problem with back pain is that that muscle gradually disappears. It isn’t activated in health, and the muscle turns to fat. It’s called fatty infiltration, which is really a sign of the dysfunction. Those muscles have to be really good at maintaining strong loads and adjusting quickly to change in loading and positioning, and they lose all of that. And then what we’re also finding is when they lose that, much like with nerve pain, they end up with changes in the brain. So the cortical representation of where the muscles are in the brain is altered. This is why chronic pain becomes chronic long term because it basically transfers, if you like, from the back to the brain.

Evans: So what you’re saying, if I’ve got this right, is that those muscles that would turn to fat, they are being exercised, if you like, by stimulation, and exercised muscles makes them grow and work properly.

Thompson: We don’t quite know about the growing yet, but it’s all about restoring, perhaps, the types of muscle fibre so that they then do their original function better again. And there are other exciting things. If we do it early enough, will it prevent some of the lumbar spondylotic changes, which is the X-ray and MRI paresis around bones where muscles attach and you get ossification of these structures because they’re being overstrained. And so, if you can then support them with your muscles, it may be that you can actually change the trajectory of the condition.

Evans: That’s really exciting.

Thompson: It is a very exciting new thing which I think has got a long way to go and it’s just really a matter of giving hope to people with secondary back pain. So, it’s not a primary pain disorder. It really is one of those game changers.

Evans: That’s Dr Simon Thompson. So, exciting stuff just around the corner. Dr Owen Williamson is a pain medicine specialist in Canada. He has an academic appointment with the School of Interactive Arts and Technology at Simon Fraser University in Vancouver, British Columbia, where he works with those designing virtual reality environments with the hope of bringing those techniques to the treatment of chronic pain.

Dr Owen Williamson: With acute pain, the virtual reality environment is mainly used to distract people whilst undergoing short-term painful procedures, and this was originally a technique used in paediatric burns units to reduce the amount of sedation children were given during dressing changes. But my particular area of interest is designing virtual environments to help manage people with chronic pain. What we know is there are certain pain conditions that are associated with distortions about the way we perceive our bodies, and those distortions are associated with pain. And if you can correct those distortions, the pain improves.

Evans: What sort of distortions?

Williamson: A common example just off the top of my head is when you go to the dentist and have freezing put in your gum and almost immediately your face feels swollen. Yet if you were to look in the mirror, it looks totally normal. So, what you have done is by having the local anaesthetic injected created a mismatch between the way your body perceives your face normally is and the way it feels once the sensation is taken away. And that manifests itself as this feeling of swelling, where in fact there’s none that’s observable. Another example that people might know about is phantom limb pain, where someone has had an amputation and yet still feels the body part that’s been removed and can in fact feel pain in that body part. So, what we’re interested in is these perceptual distortions. We do have some conditions like phantom limb pain, or the pain associated with the complex regional pain syndrome, that can be treated by treating the perceived body distortions.

Evans: Now I know with phantom limb pain, one of the treatments they use is a mirror which can – tell me if I’m wrong – rewire the brain to thinking that the limb that you see in the mirror is the limb that’s gone. Am I right?

Williamson: Right, correct. And in a way, the virtual reality environments that we use under those circumstances mirror therapy, but in fact we can extend it beyond it because we can actually, in the virtual environment, get the phantom limb or the mirrored limb, however you like to designate it – the non-functional limb – we can get it to perform a whole lot of different tasks, not just copying the movement that is reflected from a normal part.

Evans: How does that work? What is it doing to you?

Williamson: You are correct when you say at some level it’s rewiring the brain. What we have come to appreciate is that the brain as it ages doesn’t create new brain cells, but it can create new connections. New connections can bypass those areas of the brain that have either been damaged in the past – that’s what happens with stroke – or if there is an abnormal perception of pain, what we’re hoping is by using these techniques we can rewire the brain so that signals no longer present themselves to that part of the brain that codes sensations as being painful or not.

Evans: You mentioned lower back pain. What is the body distortion there that maybe you can help get rid of?

Williamson: There are a number of different distortions. For instance, if you get somebody with back pain more on one side than the other, and you get them to draw a picture of their back, they will show that the side that is painful tends to look more swollen than the normal side. If you test sensation in the painful area, the ability of the body to accurately discriminate between points of contact, for instance with sharp objects, is diminished. There are other variations in the way that people perceive touch in chronic back pain in the affected areas compared with normal people. And then ultimately if you were to look at markers of brain metabolism associated with chronic back pain, there are changes in the circuitry that perceives stimuli coming from the back as painful in people with chronic back pain versus people without back pain. So, there are both local distortions and then there are changes within the brain in people that have chronic back pain, and the hope is that through facilitating this process by which nerves can establish new connections, that then we can bypass those processes that cause signals to be perceived.

Evans: So, some of the pain medications modify the brain signal chemically, if you like.

Williamson: Correct. For instance, people get confused when pain doctors prescribe medications that are labelled as antidepressants for pain. They assume that the pain they’re feeling is not pain but it’s being labelled as depression, but in fact some of the antidepressant medications modify the way that signals are processed within the brain. Some of the common antidepressants will actually facilitate the higher structures in the brain to suppress pain signals. Other ones will increase the ability of the brain to send pain dampening signals down the spinal cord, and you feel like you “head pain off at the pass”.

Evans: So, that is chemicals, or drug therapy. But that’s not what you’re talking about. You’re talking about changing the way the brain works without those drugs.

Williamson: Correct. But there is some information that it’s the same process that’s occurring within the brain, it’s just that it’s being triggered by a different modality. And so there is evidence, for instance, that doing interventional pain procedures or using medications, or using virtual reality environments, or using other forms of behavioural therapies, change signals in a similar way.

Evans: We’re at the British Pain Society at the annual scientific meeting. I saw the title of your talk, ‘Modifying the Matrix: Virtual Reality’, and what I immediately thought is these are games. It’s using gaming technology in a medical field.

Williamson: It could be thought simplistically as that.

Evans: I am simple.

Williamson: In acute pain, that’s true. Often the techniques there in virtual reality are to provide distraction. You are providing the brain with an alternate sensory input that distracts from the brain interpreting other signals as being pain signals. In chronic pain we’re actually trying to facilitate what’s called neuroplasticity, or the rewiring of the brain, in order to bypass the areas, if you like, of the brain that are involved in interpreting signals as painful, or facilitating activity in those parts of the brain that suppress the signals that are interpreted as pain. And the reason I talk about modifying the matrix is that you think about the pain sensing system within the brain as being a pain matrix, and hopefully we’re trying to modify that using virtual reality environments rather than operations, injections or drugs.

Evans: I just want to clear up something in my mind that… I mean, you talk about distraction. You distract the attention of a child when you’re changing medications. It’s not to put down distraction as a simple thing. The distraction actually changes what’s going on in your brain.

Williamson: Yes, but there is a difference between which parts of the brain are activated by having fun playing a video game versus undertaking some sort of motor skill within a virtual environment.

Evans: Let me go back to simplicity. Again, if I were having treatment using virtual reality for my bad back or chronic pain, and anything else, would I be wearing the eye things that kids use now?

Williamson: Yeah, it’s called the head mounted display. I mean, for virtual reality to work, the technology has to be occlusive, which means that you have to put something in your field of vision that causes you to focus on the image that you are receiving through the virtual reality application rather than being distracted by external cues. The whole reason for that is to ensure that the experience is immersive. But yeah, I mean the price of these things is coming down and you can have a head mounted display made out of cardboard costing $10 or less.

Evans: So, what would I be seeing through that head display? I mean, what images would be put into my brain?

Williamson: The one that we already using, we call it the virtual meditative walk. But basically it would appear as though you’re walking along a country lane and the way that we’ve developed the programme is that we can use sensors, whether it be related to breathing or skin resistance or pulse, that you learn to modulate, and in doing so you modulate the environment. So, as you walk along and feel relaxed, the stormy clouds disappear, and the sun comes up and the flowers start to grow.

Evans: But if I’m not relaxed, the rain comes down.

Williamson: Exactly, yeah.

Evans: The flowers wilt.

Wiliamson: If you get upset, then the weather gets worse.

Evans: It’s not unlike meditation.

Williamson: Meditation, in a way, is the opposite of distraction. Distraction is really outward looking. Meditation is inward looking, but both of those we would regard as changing attention. But what we’re also looking at now is changing embodiment, which is how we perceive ourselves in time and space. There is some evidence that when there’s a discord between your view of your body and the sensations you’re receiving, when there’s a discord there, you get an unpleasant sensation. And that’s why, for instance, people get motion sick because they’re looking at a steady environment like a book whilst they’re travelling in the car. But the ears are telling them they’re not stable, they’re moving around, and there’s the discord between their visual input and their vestibular balance input. Then they get motion sick. And so there are some conditions in pain that we already know about where there is a disconnect between what someone sees and what they feel. Then they can get an abnormal sensation that they perceive as pain. For instance, people who have osteoarthritis in their fingers tend to perceive their hands as smaller than they actually are. If you put them in a virtual environment and stretch the hand so they perceive them as normal, the pain goes away and it actually stays away for several hours once they leave the virtual environment. So ,under those circumstances, instead of taking anti-inflammatory medications, you might say you just need ten minutes of finger stretching in the virtual environment three times a day for the same effect.

Evans: Are there any downsides to using this sort of popular culture therapy?

Williamson: Yes, I think there are. To create a safe and effective environment is very difficult because there are just so many variables that have to be taken into account. One of the things that we find is that in some environments, instead of people feeling more relaxed, they actually feel more agitated or fearful. The problem is, if someone were to develop a game and call it a virtual environment gain for the treatment of pain and they haven’t gone through all the validation steps, under those circumstances that particular product may make someone feel worse rather than better. So, part of the development programme we do is including some form of patient monitoring so that if they are becoming distressed whilst in an environment, there is some way to mitigate that, either by taking them out of the environment or modifying the environment itself. The problem with the games, the simple games, is they can’t modify the environment in response to the patient other than to start a different chapter of a story that’s pre-written. So, we actually use artificial intelligence and body sensors so that the people in the environment are being monitored by the environment and the environment being modified in order to benefit the patient rather than cause distress.

Evans: That’s Dr Owen Williamson. Now, at the start of each edition of Airing Pain I like to remind you that Pain Concern, the UK charity, provides information and support for those of us living with pain, our family and supporters, and the health professionals who care for us. So, it’s important for us to reflect your opinions and guidance to help shape the future editions of Airing Pain, and you can help us by completing our online survey. It will only take a couple of minutes of your time and would mean a huge amount to us and the rest of the pain community. Just click on the link in the programme details or visit painconcern.org.uk/airing-pain-survey to tell us of your thoughts and we look forward to hearing your feedback. Now, if I may quote the great 16th and 17th century English poet John Donne, “No man is an island entire of itself. Every man is a piece of the continent, a part of the main.” And that, in a nutshell, was the message Dr Timothy Deer shared with delegates at the British Pain Society 2022 annual scientific meeting. He’s an interventional pain doctor in West Virginia and president of the Spinal Nerve Centre of the Virginias in the United States.

Dr Timothy Deer: My closing remarks really were about the interaction between different parts of the world. So, research that was done maybe 100 years ago in Britain may impact research in America today. Also, how we are an international community trying to help pain patients. So, if we think we’re doing something in a vacuum, we’re wrong. There’s always previous work done that influences future work if you’re smart. The other thing I talked about was being humble and crediting others, and what I mean by that is that for every study, there are patients who trust and give their trust to physicians to be in the study. Without the patient no studies ever happen. There are scientists who think of the idea, there are clinicians who offer the treatment. There are statisticians and researchers who analyse the data. So, it’s always a team effort and so if anyone gets to think it’s all about them as a physician or a researcher, they’re wrong. It’s a team effort of multiple people.

Evans: I like to think of it as the treatment I am getting, or your patients are getting now, has been developed over the last decades, if not more. So. the headlines today will be reality in 10 or 20 years’ time.

Deer: Just to play on your question a little bit here because I think it’s a great question. If the evolution of what’s going on, let’s take, for example, complex regional pain syndrome – If you had that condition 15 years ago and we did a spinal cord stimulator for you, you had about a 50% chance of responding really well and a 50% chance you would fail. Now that wasn’t terrible because most of those people had already failed everything else, so it still was better than zero. But now, based on the studies, and the studies have gotten much better, the devices are getting better selections, you have about an 80% chance of a long-term response. So, you’ve gone from 5 out of 10 to 8 out of 10. That’s pretty good, right? That means if you’re a patient you have a chance. 20% will still fail though, and won’t respond. You know, it’s hard to say if you going to be a responder or not. When you respond, it’s wonderful. But I do think based on the new things we’re doing, things like closed loop feedback, for example, where we measure your individual spinal cord, not to someone else’s, but yours… And then biomarkers, I think there’ll be a time in the next 10 years or so when the reality will be I’ll be able to check some specific biomarkers on you and say, “Based on the biomarker, we know this is the best neuromodulation therapy for you personally.” I think that’s going to be where we go to, and I I hope I have another 10 years left in my career to be part of that. I may not be, but we’re training a lot of great young people, so if I’m not, that’s OK.

Evans: So the future is personalised management.

Deer: Absolutely. I think doctors who use the same exact device on every patient will be out of the mainstream. It’ll be that you’ll come in and you’ll meet a doctor who is open-minded. She will look at you and they’ll look at some markers, be it be your imaging, your blood test, your urine biomarkers, some factors. We’ll look at those and then we’ll get on the table and put the small wire in and the wire will measure your spinal cord and tell us how your spinal cord responds to different types of electrical current, for example. Then, based on that we will choose to put in a certain device or a certain waveform that day. We’ll have probably a 95% or more predictability, and we’re seeing this already with some of the new systems we’re doing in America which are shortly available here in the UK, some of them already available in the EU. We can actually, on the table, tell if you’re responding or not based on a measurement system and a feedback loop at 100 times a second. If you quit responding, guess what? Once the device is in your body it’ll tell us when we do analysis that you’re not responding. We’re also doing things now like remote programming. So, let’s say you live on the coast of Great Britain and you’ve had an implant by someone who’s two hours from you by car. The price of gas is pretty terrible right now, and you don’t want to drive there. Now, I can go online, see you measure your device, see what’s going on with your device, and change your programming without you ever leaving your home. We just published an article about that. During COVID that was made allowable by the United States government, but now it’s available here in Great Britain. So, there are certain devices now where you can have remote home programming and never leave your house. I think when you’re in chronic pain that’s very valuable. You know, sometimes it’s hard for you to drive two hours to sit in a waiting room for an hour, get seen, and drive back home, right? That to me is one of the biggest advances this year, but remote home programming is a great thing for people with severe pain, and I think artificial intelligence will take over our world. It’ll be able to do things remotely. We remotely monitor you. We remotely programme you and collect your data. We’re now using a lot of motion sensors and rings that tell us your activity levels. We can measure if you start to go down. We’ll see it on our computers and we’ll call you and say, “We noticed you aren’t moving as much as you were last month, are you doing OK?” And we can make some programming changes based on that, so it’s going to become analytics and artificial intelligence, that’s where we’re going. And with that, our outcomes will improve dramatically. I think what we have to do though is we can’t be set in our ways as physicians and scientists, we have to be open to all those new ideas and realise that sometimes it’s going to be smarter than we are. But I think we also need to not abandon the humanistic traits. So, while we have all these things, it comes down still to discussions with doctor and patient. That we share our ideas, that we listen to our patients, and that we respond to our patients not based on what we think but what we think together because I think you have to really be empathetic to your patients’  needs, particularly when they’re in chronic pain. To me, that’s still going to be critical despite artificial intelligence, despite closed feedback loops, despite new wave forms. If we lose our empathy for our patients we will still fail. So, it comes down to all those things, plus empathy.

Evans: Dr Timothy Deer. As in every edition of Airing Pain, I’d like to remind you of the small print that whilst we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound based on the best judgements available, you should always consult your health professionals on any matter relating to your health and well-being. They’re the only people who know you and your circumstances and, therefore, the appropriate action to take on your behalf. I’ll end this edition of Airing Pain with a few cautionary but optimistic words from Dr Owen Williamson to maybe manage our expectations. It refers to virtual reality, but I think it probably applies to many emerging technologies.

Williamson: There is already sufficient scientific evidence to suggest that it may be of benefit in chronic pain. The technique will need to be validated scientifically, just like we would validate the use of an injection, an operation, or a drug, or any other form of pain therapy. The exciting thing about using virtual reality environments is that they’re becoming much easier to afford and distribute on a global level. I mean, low back pain is a global problem. We want a global solution. A great percentage of the world has access to cheap cell phones and cheap displays where we can place some, and cheap Internet connections where people, even in developing countries in both urban and remote areas or rural areas, can have access to a treatment if we could make it safe and effective and affordable, and we hope that we can do that with virtual reality.

Evans:  Wow, that’s really exciting.

Williamson: It’s just really cool.

End

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by Cass Macgregor and Bronagh Galvin

Chronic pain, also called persistent or long-term pain, usually means pain that has continued for over 3 months, although for some this may be life-long pain.

It is a very broad category, with some chronic pain associated with other health conditions, and is experienced unequally. The severity, occurrence and disabling nature of chronic pain can increase where people experience poverty, and women are more likely than men to have pain. In predominantly white, high-income countries (e.g., UK and US), the occurrence of pain is higher among racially minoritised groups. A recent Public Health England report found that Black people had 10% higher occurrence of pain than any other ethnic group.

Understanding inequalities

There is no natural law which means that black people living in England or people who grow up in an area of deprivation should have more pain than white people, or those who grow up in more affluent areas. This is why we need to understand more about social, political and economic determinants of health and how they can lead to changes in our experiences of pain. These causes of health inequalities are rooted in unequal distribution of income, power, and wealth, which influence our living and work conditions, our experiences of discrimination (e.g., racism and sexism), and our individual behaviours, lifestyle, and biology. The Dahlgren-Whitehead rainbow shown below illustrates these ideas, and how general socio-economic cultural and environmental conditions can have a direct impact on individual people.

Dahlgren-Whitehead ‘rainbow model’

Health inequalities are defined as systematic, avoidable and unfair differences in health outcomes between groups of people; they are not naturally occurring differences. Understanding power is vital in understanding how health inequalities materialise. Those who hold more power may have difficulty in recognising and identifying the privilege they hold which can also be an uncomfortable experience. Differences in power may be more obvious to those who are adversely affected, as illustrated by the video below.

Inequalities and lived experience

The experience of poverty and marginalisation may also silence the voices of those affected and lead people to place less value on their own lived knowledge. This is important because at a time where, rightly, there is growing emphasis on ‘lived experience’ we must recognise that not all experiences are the same; access to a ‘voice’ in this way, is not experienced equally. Advocating and planning for inclusion is therefore important.

Health and politics

While daily life can sometimes feel far removed from our politicians, their decisions do affect us. Improvements in health, particularly in our poorest communities, were already slowing prior to the Covid-19 pandemic and cost of living crisis. Public health researchers report growing evidence to show this deterioration in health is linked to austerity policies. Recent news items on the current situation in the UK have included: normalisation of people relying on food banks who are employed full-time; doctors starting to prescribe help with energy bills; recent hospital attendances for hypothermia; GPs reporting the rise of malnutrition cases. Some of our patients tell us they can’t afford to eat nutritious food, pay to take part in exercise such as swimming, or to stay warm, and finances bring extra stress. These examples show the social determinants of health taking effect, and may lead to worsening health inequalities and experiences of pain.

Next steps

Steps can be taken to mitigate for health inequalities. Health care is usually designed by healthy people, with their abilities, literacy and capacity in mind. It doesn’t always meet the needs of patients, particularly those affected by poverty and trauma, the effects of which can be experienced across generations. In Scotland there are ambitious plans for a pain management framework and for public services to be trauma-informed. We should be aware when developing new services if they are only accessible to some, this could widen existing inequalities. In chronic pain physiotherapy in Lanarkshire, we are routinely asking patients who attend about money worries, and signposting to financial inclusion services if indicated.

To adequately address health inequalities, however, we require change to the most powerful determinants of health, which lie outwith the health service and this will require an element of wealth redistribution. We should be concerned over further cuts to local authority and NHS spending in the UK and the impact this is expected to have on health. Yet, hope for change is still possible; other countries have made different choices and continue to do so, in the UK we could do this too. Given this situation, we would like to ask readers, what should we do about health inequalities in chronic pain?

About the authors

Cass Macgregor is a physiotherapist with NHS Lanarkshire and PhD student at Glasgow Caledonian University: Email
Twitter: @MacgCass

Bronagh Galvin is a student on the doctoral physiotherapy programme at Glasgow Caledonian University and is currently conducting an evaluation of asking about money worries in NHSL chronic pain physiotherapy.
Twitter: @bgalvinphysio

We would like to acknowledge the work of others in development of this blog for Pain Concern: David N Blane, Shiv Shanmugam, Kerry Noon, Jackie Walumbe, S. Josephine Pravinkumar, Chris Seenan, Emmanuelle Tulle, Gregory Booth

Pain Concern invited us to develop a blog after engagement with our editorial in the Scandinavian Journal of Pain which covers some of the literature on which this blog is based, and we give the additional relevant literature sources below. Please get in touch with Cass for any particular queries.

Macgregor, C, Blane, D N, Pravinkumar, S J and Booth, G. (2022) Chronic pain and health inequalities: why we need to act. Scandinavian Journal of Pain, 2022.

McCartney, G. Popham, F., McMaster, R., Cumbers, A. (2019) Defining health and health inequalities. Public Health. Vol. 172, P 22-30

Marmot, M. (2022) Lower taxes or greater health equity. The Lancet. 400(10349), pp.352-353. Available from Science Direct:

NHS Education for Scotland and Scottish Government (2019) The Scottish Psychological Trauma Training Plan.

Public Health England (2020) Chronic Pain in Adults 2017. Health Survey for England. Public Health England. Department of Health and Social care.

Scottish Government (2022) Pain Management – service delivery framework and implementation Plan.

The Dahlgren-Whitehead Rainbow – image and explainer

Walsh D, Dundas R, McCartney G, et al. (2022) Bearing the burden of austerity: how do changing mortality rates in the UK compare between men and women? J Epidemiol Community Health. DOI: 10.1136/jech-2022-219645

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Many of you will have watched Prue and Danny’s Death Road Trip (Channel 4 production) in which Prue Leith talks movingly about watching her older brother David die in pain in 2012. Leith now supports assisted dying, while her son, Danny Kruger MP, is against it.

Dame Esther Rantzen has already recently disclosed that, following a lung cancer diagnosis, she is considering assisted dying as an option if her symptoms worsen.

Following this recent coverage of assisted dying, we have gathered some information regarding assisted dying and pain.

Inquiry into assisted suicide and assisted dying

The Health and Social Care Committee is considering evidence into assisted dying/assisted suicide, so we expect to hear more about the issues when they report. It is worth reminding ourselves about pain control at the end of life. Palliative Care services were pioneered in the 1960’s in the UK by Dame Cicely Saunders. Good services should encompass the physical, psychological, social, and spiritual aspects of pain and suffering. 

Yet reports have persisted of the under-treatment of pain or poor access to care, so in 2019 The Faculty of Pain Medicine along with the Association for Palliative Medicine, Association of Cancer Physicians and the Royal College of Radiologists (Faculty of Clinical Oncology), published a framework for pain service provisions for adults in the UK who have cancer or life-limiting diseases. Their guidance called for closer integration of pain management, oncology and palliative care services. Yet in 2021, The Association for Palliative Medicine UK wrote that, ‘Over 300 people a day in this country suffer unnecessarily due to lack of access to specialist palliative care services’.

Share your thoughts on assisted dying

Do you have experience of these services that you would like to share? Are you for or against assisted dying?  Tell us– we want to hear from you and know what you think.

Learn more about palliative care in Airing Pain editions 84: Cancer Pain and 110:Living With Cancer Pain – listen or read the transcripts.

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Pain Concern invites you to help shape the future of Airing Pain, the award-winning radio programme and podcast.

Please fill in this short survey to support what we do.

If you prefer, refresh your memory before you begin and take a listen to Airing Pain.

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Pain Concern received funding from the Scottish Government to enable us to support patients waiting to be seen by pain management services at NHS Forth Valley.

The helpline service was offered that provided specific information about the Forth Valley Pain Management Service, self-management and how access to helpful resources.

Forth Valley Pain Managment Service Helpline Poster


This helpline has now closed – the general Pain Concern helpline is still available to provide support.

good to know there was someone to call and was very pleased to speak to someone.

Caller feedback

Helpline project details:

  • Over 1000 texts sent to patients  to inform them of the service.
  • Letter and leaflets sent to new and return patients.
  • Regular promotion on social media channels.

Independent Evaluation

An independent overview of the project can be found below, findings included:

  • 70% of callers stated that they felt more positive after speaking to call.
  • 65% said they felt better prepared for their healthcare appointment.
  • 74% of callers received additional resources from Pain Concern.
  • This project was exceptional in that it is an example of a charity and NHS Board working together to reduce waiting lists and focus on efforts to help patients deal with this.



‘Wow! This really is a fantastic help, as was our discussion yesterday.
I am extremely grateful to you – thanks very much’

Caller feedback

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