Pain Concern

The place of faith in pain relief, plus physiotherapy meets mental health, and educating doctors

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It’s well established that pain needs to be understood and treated as a biopsychosocial problem, but what about the spiritual side of life? Professor of nursing and Anglican chaplain Michelle Briggs speak to Paul Evans about how some people in pain can find relief and meaning in the prayer and community engagement offered by their faith.

We’ve looked at the issue of pain education before – Emma Briggs gives an update on the struggle to increase pain training for doctors and improve its quality. Her interdisciplinary pain management course brings healthcare professionals together with a focus on empathy, working as a team and understanding the importance of drug and non-drug treatments.

Physiotherapy and mental health care might seem at opposite ends of the pain management spectrum, but physiotherapist Nathan Goss sets out why we have to see pain as a mind-body problem and argues that mental health difficulties are ‘something we all experience’.

Issues covered in this programme include: Multidisciplinary approach, the biopsychosocial model, mental health, educating health professionals, religion, faith, physiotherapy, research, psychology, communicating pain and empathy.

Paul Evans: Hello, I’m Paul Evans and welcome to Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain and healthcare professionals. This edition has been funded by donations from residents at Falcon House, Edinburgh.

The biopsychosocial approach to managing chronic pain is well established. It acknowledges that thoughts, emotions, economics, environmental, cultural and biological factors all contribute to our wellbeing. But could the word ‘spiritual’ be added to that description?

‘Towards culturally competent pain assessment’ was a research project funded by the National Institute for Health Research. It explored the experience, expression and management of chronic pain across the five [most] common faith communities in the UK – Jewish, Hindu, Sikh, Muslim and Christian. Forty-four participants aged 65 and above were asked about their experiences of pain, their choices around self-management, their interactions with health professionals and whether or not faith had influenced the way they managed their pain.

Michelle Briggs was one of the research team. She’s Professor of Nursing at Leeds Metropolitan University and she’s an Anglican chaplain.

Michelle Briggs: We could not see any specific pattern of a Christian way of dealing with our faith or an Islamic way of dealing with the faith. What we found more interestingly is that the majority of people found faith as an incredibly positive resource to help them with their pains, so they talked about their [faith] providing solutions to help them live positively with their pain, in terms of prayer, in terms of community engagement, the support that they got from other members of their Faith community. They talked very positively about how their Faith had helped them cope and live with their pain and also not only cope and live with their pain but a way of understanding what their pain meant for them – their faith helped them have a sense of why we have pain in the world.

And that, as a pain community, what we saw was, certainly within the palliative medicine field – Dame Cecily Saunders was a pioneer in that area – and she talked about pain being a total pain experience, whereby we have physical pain, we have psychological, social and spiritual elements to our pain. And, that actually, that’s one of the things we think – that we have pain because our bodies are broken, we have pain because the way we are thinking about pain might help, so our thoughts are broken or need fixing or we have pain because maybe our relationships break down or that there are issues around our relationships – and one of those relationships could be our relationship with God or within our faith.

And certainly within the palliative care field, one could argue that the pain management within that area is opened up because we are able to talk about all of those aspects, in a way that we don’t necessarily talk, when we are talking about chronic pain management, where we focus sometimes predominantly on the broken bodies and maybe we talk about the psychology, but don’t necessarily talk about the social factors that can help.

Evans: Are there any instances where our concept of God might get in the way of us managing our pain?

M Briggs: I think sometimes that might be – in the same [way] as anything can be a barrier to getting good pain relief: the way we work with our families; the way that we work with our health professionals; the way that we see God; the way that we’re working with our faith community… sometimes that can be a difficulty and it’s why within the research what we’ve come up with is a series of questions that, actually from a pain consultant point of view, or if you’re going to a pain clinic, you may think about… one of the questions that we’re asking is ‘Does your religion influence how you understand your pain and it’s cause?’

And of course there’s the potential there for that influence to be a positive influence, because it helps me understand why I have my pain, but it could be that it’s a negative influence, and that actually it’s getting in the way of me accessing pain treatment or thinking about pain. Or, indeed, what we’re asking is ‘Can you tell me if aspects of your religion make your pain better or worse?’

One example that was given was somebody who felt that they would like to continue with their prayer, but the pain that they had made the prayer positions particularly difficult, so there was a real tension there. And one way their pain consultant helped them was to find a way to perform their prayers in a way that helped their pain. So that there were different ways to say the prayers and do the prayers, that combined their physiotherapy and their prayers.

So there are ways that when you ask those questions and you give people permission to talk about it, that we can find ways of improving people’s pain management in combination with their faith community.

Evans: That’s incredibly important, isn’t it?

M Briggs: I believe so. I think sometimes we talk about being able to see all aspects of somebody’s life and being able to work out how the pain can sometimes be in the driving seat of that person’s life. They can be thinking about how the pain is stopping them doing things, and one area of their life can be their participation in their faith community, but it’s an area of life we don’t necessarily talk about. But there’s a lot of evidence to suggest that prayer can help some people if it’s an important part of their religious life or that other aspects of being able to participate in their faith can help their pain experience.

So being able to facilitate that as pain specialists, is an important area for some people. The important thing is that what we need to make sure when we’re helping people tell their stories about how the pain is making a difference to their life, that we give people every opportunity to say the things that matter to them. For some people, in terms of our service user group, the older people that we spoke to in our research said ‘Oh, I don’t think it matters at all, I don’t need to talk to my doctor about my religion – it’s not positively helping me, it’s not negatively getting in the way – it doesn’t matter at all.’ As is [the case with] lots of other things that we do around our pain – but when it does matter, it matters a lot. So I think that the important thing is that our assessments and when patients come and talk about pain, if it is an issue, that they are able, and they have permission be able to talk about it when it does matter.

Evans: Depending on your level of faith, whatever that faith maybe.

M Briggs: Yes, yep.

Evans: Pain is an all embracing thing – it’s your life, it’s biopsychosocial. If that is your life and your faith is your life, then everything is linked.

M Briggs: Absolutely, and it’s part of any health professional’s role to consider all aspects of somebody’s health and think about these social, cultural and spiritual aspects, where they may provide solace or they may provide an area where there’s work to be done in terms of improving somebody’s pain management. So it’s incumbent on people to be considering those. The real difficulty is how you consider those and how you sensitively and culturally ask questions, so that people feel safe and able to talk about their pain in that way.

Evans: That’s right, if a pain doctor says to you, would you like to see a chaplain?

M Briggs: [laughs] Absolutely!

Evans: …and says it the wrong way and…

M Briggs: And certainly our service users group said that that certainly shouldn’t ever be the first question and that it should be a sense of ‘What is your religion, if any? Do you have a religion? If you have one, does it influence how you understand your pain? Does it influence how you make decisions about your pain management?’ And if people are saying ‘yes’ to those questions, then there are deeper questions to ask around ‘Can you tell me particular aspects of your religion that are helping you and is there a way we can help you facilitate that?’

The example I gave about somebody struggling to participate in their prayers, and there was a way that that could be helped. Another example was a Sikh gentleman who found that part of his faith was to participate in the service and he wasn’t able to, so there was a way found to allow him to continue to participate. There are ways that unless we have those conversations, we can’t work out ways of helping.

But you’re absolutely right, sometimes if you just leap in with ‘Would you like to see a Chaplain?’ the word ‘Chaplain’ might not even be understandable to most people, or the reason for seeing that person. Bearing in mind the group of people we are speaking to are people who are connected to the faith, they said ‘Oh no, don’t ask that question first, ask us why this is important to us and ask us whether this should be part of our pain management plan’.

Evans: So, biopsychosocial should be sociobiopsycho or maybe sociobiopsychospiritual?

M Briggs: Cecily Saunders would argue that a total pain model includes consideration of the biological, psychological, social and spiritual factors within that person’s life. And, of course, for some people it will be a totally physical problem, for some people it will be a physical and psychological difficulty that they’re working with and for other people the social and the spiritual factors will also be a part of that equation to getting to good pain relief.

Evans: That was Michelle Briggs, Professor of Nursing Care, Leeds Metropolitan University.

I’ll just remind you of my usual words of caution, the small print if you like, that whilst we believe the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

Now, picking up on the points made by Michelle Briggs about the biopsychsocial and maybe spiritual factors affecting a patient’s wellbeing, is the next generation of doctors and health professionals receiving the appropriate training to be able to take all of a patient’s life factors into account?

Emma Briggs is a lecturer and Kings teaching fellow at King’s College London. She’s also chair of the British Pain Society Pain Education Special Interest Group. Back in 2011 the group published the results of a study looking at how much pain education students across the health disciplines were receiving. And it may surprise you to know that some vet schools were included in the study.

E Briggs: There was one University, one Veterinary School which did do a significant amount of pain teaching in their curriculum, which was higher than some of the schools that were teaching health disciplines for human healthcare. However, we only had two schools in the sample. It’s difficult to make that conclusion universal. However, we do know that it makes up less than one per cent of the curriculum, pain education, when it is an increasing health concern. We have a third of our adult population who are experiencing long term persistent pain and just taking back pain alone, it’s costing the economy 12 billion a year, estimated. It has a devastating effect on the individual lives of that many adults, yet we don’t have it represented in the preparation of our healthcare professionals in that way. And it being an increasing healthcare concern, we need to see it in the curriculum; we need to see our healthcare professionals better prepared, so that they can manage pain for individuals, for their family and for public health.

Evans: So what sort of education are they getting?

E Briggs: What we know is that they’re getting on average about twelve hours of education. We’ve recently conducted a study with the European Pain Federation (EFIC) and this looked at just medical undergraduates this time, whereas our previous study was a whole range of disciplines, but it compared the education across Europe and that was fascinating in itself. So we reckon they’re getting on average twelve hours, which in those figures when the European standard is for medical students to have a curriculum which is 5,500 hours. So really, we’re only getting 0.2 per cent of the curriculum.

But what is interesting is how they are being educated and it’s largely by lectures, their knowledge is then tested through exams. So it’s all about information and knowledge recall, which is great but by itself it’s not going to help me as a clinician, learn how to communicate, learn how to have empathy with a patient, learn to problem solve, assess their pain and then make some clinical decisions about how am I going to treat this; how’s the best pharmacological treatment; how’s the best drug techniques that I need and is there any non drug techniques, some alternative therapies, that might help this individual? None of those techniques are going to help those skills and that competence that we need.

Evans: Are we on a par with other countries in Europe or the world even?

E Briggs: Unfortunately not, the UK figure is that sixty-eight per cent of universities in the UK have some sort of pain teaching, but that’s usually spread out in other modules. So it might be in a module on pharmacology, it might be on the pain mechanisms and physiology, but they don’t have dedicated pain management time.

Quite interestingly, in France, I suppose our closest comparison, eighty-four per cent of their medical schools actually had dedicated time, dedicated modules for pain teaching. That’s because they have had a national plan around pain management since 1997 and in 2004, they made it compulsory that all medical schools should include pain within their teaching. All of them have pain teaching and eighty-four per cent of them have dedicated modules – so a block of teaching actually on pain itself. Germany are not far behind because they have worked with palliative care to get it on the curriculum and get it on the students final exams as well.

Evans: But, I suppose pain may not be a sexy subject for young undergraduate. It may not be an easy module to sell for the powers that be, in the universities and colleges. How do you make it sexy?

E Briggs: I think we’ve got to demonstrate the impact and continue to shout from the rooftops, the impact that it’s having on individuals and their families. The increasing public health concern and, very sadly, I think, people respond much more to the economic aspect. And I think we’ve got increasing numbers in Europe. And I think there was a study that was conducted in Ireland, that said on average somebody in persistent pain can cost the economy 5,000, 6,000 euros, but that figure can actually go up to 30,000 euros, depending on the treatment somebody is having. So unfortunately sometimes the powers that be only respond to the economic arguments, but increasingly, there is this argument around social justice.

But actually, it’s around saying that the health needs of the population need to be represented in how we are preparing our undergraduates. I was talking with some lecturers from South Africa and they were saying, actually, their local population… they increasingly need to teach around HIV and it’s very difficult to get pain in there. Our population needs are different and pain needs to be up there as a priority

Evans: Emma Briggs.

Now Nathan Goss, is not a student, rather he’s Senior Physiotherapist at the pain management programme at the Walton Centre in Liverpool. But when I spoke to him he was a relative newcomer to the world of pain, with just two years in this specialist field.

Nathan Goss: The area I worked in prior to pain was the mental health field. So I was a mental health physiotherapist – not the most usual field to be working in. There are plenty of physiotherapists working in the mental health field but we’re not well known or understood really, what our roles were. And I was looking for an area in that I could combine my knowledge of physical health and mental health and the standard of mood problems and psychological difficulties really and pain brings those two fields together.

Evans: In what way?

Goss: Pain affects us not just physically, but emotionally and mentally as well. As a physiotherapist, I have always thought we are in one of those great positions, to be able to prescribe movement and exercise, which we recognise as being very important in the presence of any mental health problems or pain problems. Not a lot of people can actually do that I suppose, prescribe the exercise.

Evans: So, you were involved with people with mental health issues, depression, anxiety?

Goss: Absolutely, absolutely, the incidences of depression and anxiety are recognised as being much higher in the chronic pain population. Like I said, the role of exercise, the fear of movement that chronic pain brings is well recognised and it’s a good role to be able to be able to understand both parties and actually help people get moving; because it’s one thing being recommended movement but, actually, you need to have the recognised background knowledge to be able to do that, the reassurance… The method of delivering that advice, slots in very nicely with the area I’m moving into I suppose.

Evans: As a patient, if I were being referred to a physiotherapist, and the plus point of that particular physiotherapist was ‘he’s worked with mental health patients’ – that would ring some alarms bells in me.

Goss: I think that’s inevitable, we’re assessing people with pain problems all the time. The mention of mental health, mood, depression, psychological difficulties creates that impression in a lot of people. And that’s why we have to be good at understanding the impact of pain. And not just telling people, we have to learn from the patient, we have to understand their experience of pain.

And, actually, I think it’s just about taking away the stigma really. I always describe mental health or psychological problems as something that we all experience. We’re all on a sliding scale, it’s not just something that gets to a certain tipping point and you’ve got something wrong with you. We’re human beings, so we all have human psychology. We’re on the sliding scale of mood – I wake up some days feeling not so great and find it more difficult to interact with others and maybe those interviews made me a little bit anxious as well beforehand. But these are human emotions and difficulties and we try to normalise that a little bit, I suppose, that’s what we try to do, when I’m working with people with pain problems, rather than making them feel ‘I’ve got a mental health problem’. Because I can understand that, if that’s not delivered in the right way, it could be a bit of a shock.

Evans: But you’re not a mind therapist, you’re a body therapist.

Goss: You can’t separate the two, really. Mental health work and working with the psychological side of things a little bit was the underrepresentation at university. We’ve just had a talk, suggesting university students get thirty seven and a half hours of pain education, which I’m not sure was the case when I was at University. I know we had a three hour lecture on mental health problems and I remember just thinking, that’s not representative of where I want to be as a therapist. I need to be able to deal with both the mind and body [laughs] side of things. I think that’s what therapy is about really, treating a physical difficulty or the other side, it’s both together – they need to be integrated really.

Evans: What have you learned in your first two years of pain management?

Goss: I’ve learned that pain is a very complex thing. It’s not something that is brilliantly understood in the context of other medical problems and in the field of the medical world – there’s still lots and lots to learn and I’ve got a long, long way to go. But there are also some very simple, helpful messages that you can give to our group members, to help them move forward and lead a better quality of life. That’s what I suppose keeps me interested and makes me enjoy my job, is the fact that there is scope for people to improve their quality of life. But certainly, there’s a lot more to learn and lots of exciting future directions as well I think for pain management.

Evans: Nathan Goss, Senior Physiotherapist at the Pain Management Programme at the Walton Centre in Liverpool. Now when I got my first job in a completely unrelated field, I received three months of intensive lectures and cramming, before being let loose on the real thing. But I felt I’d learned more in the first week following that training period, than in the previous three months with my head buried in a textbook. Learning the theory is, of course, essential but experience of real life situations cannot be learnt in a book. So, going back to our undergraduates, how could the gap between lecture room and dealing with real patients be bridged? Emma Briggs again:

E Briggs: How we teach our undergraduates at Kings College London, is to make sure they get some lectures and they get a chance to rehearse those skills they need to work with patients. We have an undergraduate programme, something called an Interprofessional Pain Management Learning Unit and thirteen hundred students come together to learn about pain. And they’re from all different disciplines, so they’re from dentistry, medicine, nursing, midwifery, pharmacy and physiotherapy, and we give them some background information, some online learning to do and they meet a virtual patient with different painful conditions.

And they work through some of their communication issues, their empathy and then they need to demonstrate that to us in the classroom as well. So we then meet them in the classroom, they work in an interprofessional group, it’s called, they work as a team because they need to collaborate as a team, as that’s how they would work in practice when they qualify. So they collaborate to actually demonstrate the communication, the empathy, their understanding of the biopsychosocial, so they really understand the impact of that pain on the individual.

Then they come up with a plan which includes drug techniques and non drug techniques and we make sure that they understand the importance of working as a team. And in fact they do – the feedback that we have from that learning unit is… some of the direct quotes from the students is ‘I now understand the need to work together as a team and how the outcomes for the patient can be better as a direct result from that’.

Evans: These are virtual patients, do they meet real patients?

E Briggs: They do indeed, but at different stages of their career. They will have placements throughout – it’s a core requirement of the course, that they have a certain number of hours. So in nursing for instance, half the course, fifty per cent has to be clinical time. Whether they have experience with some of the pain services varies according to the individual. We take in four hundred students, unfortunately, we couldn’t get four hundred students time with clinical nurse specialists or specialist physios, but some of them do rotate in, if they have an interest in pain management. And they often do projects around pain management and special study units, which will focus on pain, so they do have opportunities.

Evans: Do they meet expert patients, people who come in and talk about how pain affects their life?

E Briggs: The expert patient in the classroom is a really powerful tool and yes they do. My experience with expert patients is, to give you one example, was of a patient who had to come and talk to a group and somebody says ‘well we don’t sometimes have time to do that assessment on pain management’. And they’d said this to me in the morning and I said ‘let’s have a think about that and what are the alternatives’ and we worked round it. In the end I said ‘What would the Nursing and Midwifery Council say about that? If you said “I haven’t had time to do a pain assessment?”’

When the expert patient came in the afternoon and the student repeated the question – ‘sometimes I don’t have time to do a pain assessment’ – the patient said to me ‘You don’t need a lot of time, but I need to know you are with me and that you’re understanding me and that you’re listening to me and that is enough for me. I realise that sometimes you don’t have half an hour to do an extensive pain assessment but just be on my side and that means a lot to me.’

Evans: That’s very powerful isn’t it?

E Briggs: Very, very powerful, very powerful and they clearly weren’t listening to me in the morning but when the patient came along, it was incredibly powerful.

Evans: You mention students who’ve been through this process of learning, do you have any feedback from people who haven’t, who would have liked to have gone through it?

E Briggs: That’s very interesting, with the study we’ve been doing, the European study, looking at medical students, we interviewed students in their final year or who’re just qualified and we interviewed deans and lecturers and around managing pain itself.

Evans: So they had been released into the field and suddenly they feel cut adrift.

E Briggs: They do, absolutely.

Evans: I glibly said at the start ‘How do you make pain a sexier subject?’ Really, I would think that most people go into medicine because the patient is the focus of everything. Well that’s how you make it sexy – it’s working to help the patients, and an awful lot of us are in pain.

E Briggs: Absolutely, I agree with you totally Paul because in our Interprofessional Pain Unit, that exactly what we do and that’s always keeping the patient at the centre. Making sure that the students work together and focus and collaborate and those are the skills that they need for the practice.

We were talking about the expert patient in the classroom, it’s a really powerful learning tool is bringing people together, learning about people’s stories and journeys and impact, because many of our students are going to be eighteen, nineteen – they may not have seen anybody with long term pain. They’ll have their own pain experiences, but they may be short term and it’s really important that we help them understand. And that’s one of the other feedbacks that we’ve had from our learning unit – ‘we never appreciated the range of painful conditions that people have had’. So it’s important that people understand that there are different treatment plans for different painful conditions.

That’s Emma Briggs, Chair of the British Pain Society Pain Education Special Interest Group.

Don’t forget that you can download all the previous editions of Airing Pain or obtain CD copies direct from Pain Concern. If you’d like to put a question to Pain Concern’s panel of experts or just make a comment about these programmes, then please do so via our blog, message board, email, Facebook, Twitter or pen and paper. All the contact details are at our website which is www.painconcern.org.uk.

Last words on undergraduate training to Emma Briggs:

E Briggs: We need to more adequately prepare them, we need to get their skills – it’s not just about their knowledge. We need to develop their communication, empathy, problem solving, those prescribing skills, those patient education skills – helping patients with self-management – it’s a huge area missing in the curriculum at the moment. So we need to educate them better.

In my role as Chair of the Pain Education SIG [Special Interest Group] we’re working on that and we are hopefully going to launch a document which will help universities with competencies and values that we feel are important to bed into the curriculum. And we will also work with the individual disciplines that have a regulatory body like the General Medical Council, like the Nursing and Midwifery Council.

And we need to work with them because they set some of the standards around pain, and pain is in those standards but in very minimal form. So, just to give you an example, the ‘Tomorrow’s Doctors’ document, it refers to being able to prescribe for common indications, such as pain and then it says, doctors should learn how to use local anaesthetics, and that’s it – that’s the whole of their recommendations around pain management and how we should be preparing our medical students. We need to work with them, in order to get some more standards around pain management, make sure it gets into the university curriculum, so that our healthcare professionals are better prepared to manage pain when they are qualified.

Contributors:

Michelle Briggs, Professor of Nursing, Leeds Metropolitan University
Emma Briggs, Lecturer, Kings College London
Nathan Goss, Senior Physiotherapist, Pain management programme at the Walton Centre in Liverpool.

ACHIEVEMENTS

Airing Pain radio programme

This ever-popular programme continues our collaboration with Sony award-winning broadcaster Paul Evans and internet disability radio station, Able Radio. There are now over 65 innovative half-hour podcasts on our website, informing and supporting the pain community. In 2014 we broadcast 10 new programmes and independently monitored listener figures show listener numbers for the year of 137,000. Topics have ranged from young people living in families with pain, the Pain Toolkit to EFIC’s conference on the societal impact of pain. An evaluation of Airing Pain showed it to be well received by listeners , with 80% saying they were helped by listening and over 90% saying they would recommend it to others.

Pain Matters magazine

A recent evaluation of our quarterly Pain Matters has shown that it informs and empowers readers by raising awareness, reducing feelings of isolation and boosting self-management skills. It is available in print and electronic format. During 2014, 10,500 copies of Pain Matter’s four editions were distributed.

Leaflets

In 2014 we have published a new leaflet on Managing Medications and a booklet for young carers (see below).

Research

We have planned and completed the first year of a 2-year research project investigating the barriers in primary care settings that hinder people in learning to self-manage their pain. We have presented the results of the 1^st year’s research at the March 2015 SPaRC conference in Dundee and on our website. Our poster has been accepted for the 2015 Annual Scientific Meeting of the British Pain Society and they will publish an article in Pain News.

Young carers

In 2014 we undertook a project to support young adult carers supported by the City of Edinburgh Council and NHS Lothian. We produced two radio shows, a CD/booklet package Pain: The Unwanted Guest and we created an online forum dedicated to young carers.

Helpline

We are developing a unique Helpline Pain Training to ensure that helpline volunteers have a thorough understanding of chronic pain and its management as well as call handling and helpline skills. We have an expert advisory board to steer the project, chaired by Dr Meherzin Das, Clinical Lead at Dorset Community Pain Management Service. So far, 30 volunteers have been enrolled in the training pilot. Their feedback will be used to improve the programme in the future.

Demand on the helpline service continues to grow, and nearly 2,000 members of the pain community contacted us through this service in the past year.

Walking for Health

In collaboration with the Health and Social Care Alliance and Glasgow’s Pain Management Programme, we piloted a Walking for Health project, with walks especially adapted for the Chronic Pain Community.

Quality monitoring

We have Information Standard accreditation. This prestigious award ensures that our information meets the quality standard required by the NHS and the Map of Medicine. We are reviewing processes and developing our helpline training in line the requirements of the Helplines Standard, with a view to working towards accreditation.

External affairs

Pain Concern members sit on various top-level policy groups: The International Association for the Study of Pain’s Expert Patient Advisory Group, NHS England’s Clinical Reference Group for Specialised Pain Services, the Scottish Government’s Chronic Pain Steering Group, RCGP’s Pain Group, the Chronic Pain Policy Coalition, Pain UK and National Voices Long Term Conditions Group.

Marketing and Publicity

It is important that we reach as many people as possible. Our marketing team has built solid communication channels with 30 pain clinics across UK. In addition to holding and distributing our materials, several clinics in Scotland have also organised regular information sessions, where our volunteers are on site to meet with patients and healthcare professionals to provide information and signposting.

We had exhibition stands at the British Pain Society’s 2014 Annual Scientific Meeting in Bournemouth and at the World Congress of Pain in Buenos Aires, Argentina. We also attended many local self-management days throughout Scotland.

Collaboration

The Chartered Society of Physiotherapists co-badged their Physiotherapy Works chronic pain briefing, which goes to healthcare professionals. NHS Grampian and NHS Greater Glasgow and Clyde are producing jointly branded editions of A Guide to Managing Pain to be distributed in their Health-point facilities. We are collaborating with NICE on publishing information on neuropathic pain. We have produced a section of a chapter for the Royal College of Anaesthetists Faculty of Pain Medicine publication ‘Standards for the Provision of Pain Services’. The section is Chapter 5 – Patient Pathway: Communication with patients.

LOOKING AHEAD

Incorporating

Demand for our support continues to increase so to ensure that we can meet future demands; we are registering as a company limited by guarantee.

Pain Training

We have been collaborating with NHS Greater Glasgow and Clyde to set up and deliver a pain training, developed by the NHS, in a primary care setting. Work is almost complete. The pain training will allow us to reach people earlier in their diagnosis and ensure that they have the basic information they need to understand and manage their condition.

Media Projects

We have been awarded a grant to produce a radio programme and an article on Female Genital Mutilation. The focus will be on its long-term impact and how it often results in long term pain. And – linked to our research project – we will produce a radio programme and a video aimed at empowering people to improve their self-management skills and, importantly, to improve communication with their healthcare professionals.

The place of faith in pain relief, plus physiotherapy meets mental health, and educating doctors

This edition is funded by a donation from the residents at Falcon House, Edinburgh.

Contributors:

Michelle Briggs, Professor of Nursing, Leeds Metropolitan University and Anglican chaplain
Emma Briggs, Lecturer, King’s College London and Chair of the British Pain Society Pain Education Special Interest Group
Nathan Goss, Senior Physiotherapist, Pain Management Programme at the Walton Centre, Liverpool.

The challenges facing young people in caring roles and ways to support them

This edition is funded by a grant from the Dorothy Howard Charitable Trust.

Friends don’t always understand, they don’t get out much and they’re faced with daunting responsibilities, but they wouldn’t change a thing about their families. So say the young people Paul Evans meets at a support day for carers in south east Wales.

There are 178,000 young carers in England and Wales doing unpaid work for parents too ill to perform essential household tasks or even look after themselves. Kerris Olsen-Jones, who works to support these children and young people – some as young as five years old – says that they sometimes ‘miss the opportunity to be children’. She and her colleagues help the young people to socialise and make the most of the opportunities available to them.

However, many young carers do not see themselves as carers, so may not get access to support. Ethan Mason, who cares for his mother who has fibromyalgia, describes how as an adolescent he had to deal with a house fire alone, while fire safety officer Julie Goodfield gives fire prevention tips for people with disabilities and their carers.

Issues covered in this programme include: Young carers, friends, relationships, family, children and young people, fibromyalgia, fire safety, depression, mental health, peer support and multiple sclerosis.

Contributors:

Adrian, Amy, Courtney, Emma, Ethan, Leon, Sophie, Tom, young carers
Kerris OIsen-Jones, Young Adult Carer Development Worker
DJ, Young Adult Carer Support Worker
Julie Goodfield, Fire Safety Officer.

More information:

More information on support for young carers can be found at childreninwales.org.uk
Visit our resources on Families and Children to listen to more Airing Pain programmes on this topic and find out more about the help available across the UK.

The challenges facing young people in caring roles and ways to support them

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Paul Evans: Hello, I’m Paul Evans and welcome to Airing Pain the programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain and healthcare professionals.

Youngsters: I’m Amy Vernon, I’m Sophie Carroll, I’m Adrian Griffiths and I’m Tom Hall.

Evans: And where are we today, what we doing?

All: We’re are at the Welsh International Climbing Centre,

Evans: It will all become clear in just a moment [laughs]. Now according to the last UK census – that was in 2011 – there were just under 170,000 young unpaid carers – that’s five to seventeen year olds – in England and Wales. Over all, Wales had the highest proportion, with more than 11,500 young carers. Two years after that census, the Welsh Government set out its carers strategy for Wales, in which five priority areas were identified. Health and Social Care, Identification, Information and Consultation, carers and employment, young carers and young adult carers and support and a life outside the caring role.

And it’s those last two priorities that bring me here to the County Borough of Rhondda Cynon Taf – you’ll hear it called ‘RCT’ for short – in what was the heart of the mining and iron industries, in Wales’s south eastern corner.

Amy, Sophie, Adrian and Tom are amongst the thirty or so young and young adult carers on a three day residential activity, social and education break. So what’s in store for them?

Adrian and Sophie: What we’re doing is sexual health, fire safety, alcohol and drugs and all I know is on Thursday we’re doing caving or rock climbing.

Sophie: I’m doing Zumba.

Evans: But you’re all young adult carers.

Adrian: I’m a young carer. I’m only 17, but I’m 18 in August.

Sophie: Aw, bless!

Evans: So who do you care for?

Adrian: My mother.

Evans: Why does she need caring for?

Adrian: ‘Cos she has pulmonary hypertension, which is basically clots on the lungs. She had an operation but her chest is that much open now, it’s opening slowly cos she had an infection when she came home and they took the bars out without telling her and now her chest is basically like that [indicates width] and don’t blame me I’ve never tried and I never want to, nor has she, but she says she can feel the gap and if you want to, you can poke down with your arm.

Evans: What does being a young carer for your mother mean to you?

Adrian: It means I have to do more caring than other people, basically. So whenever people say, ‘Do you want to come out?’ and I say, ‘I’ve got to care for my Mum’ – and I don’t mind doing that – I’m not one of those people who say [groan] ‘I hate caring for my mum.’

Sophie: Then again, you must mind.

Adrian: The only thing I don’t like is when your friends say ‘do you want to come out’ and I say ‘I’m caring for my mother’ – they think it’s just an excuse.

Sophie: Yeah, I’ve had that before.

Adrian: And the only faraway place I’ve ever gone without my mother is Thorpe Park and Drake Manor and that’s basically one day.

Evans: So your mum is reliant on you?

Adrian: I do care for my mother a lot, say I am not there, my sisters will do it for me, ‘cos they’re here too. She does do some things herself, even though it kills her to do it. Like if my father is in work and I’m not here to help and neither are my sisters, she will get up and do the washing and do whatever she needs and we’ll come home and she’ll be there doubled over and breathing heavily. What upsets me is she will do all that and she wouldn’t have asked anyone else to do it. That’s why I love her so much.

Sophie, Amy Tom: Aw!

Kerris Olen-Jones: My name is Kerris Olsen-Jones and I work with young adult carers in RCT. So that’s carers, who’ve got a parent, neighbour or relative who’ve got some sort of disability, and they have to be between the ages of 18 and 25.

Evans: So young adult carers start at 18.

Olsen-Jones: Yes, yes.

Evans: But there are people that are a lot younger than that – they’re young carers.

Olsen-Jones: Yes, that’s right and we have girls in our team who work specifically with young carers.

Evans: We’re in the Borough of Rhondda Cynon Taf, which is the industrial South East of Wales, the most populated part of South Wales. Now, tell me about the young carer project you’re involved with.

Olsen-Jones: The Young Carer Project basically involves us as a team, going out, taking in referrals and going out and doing assessments on the young people to establish their needs and the needs of the family, as we cater for the family unit. We then commission a project, that Action for Children run at the moment, and that gives each young carer an opportunity to go to a group and meet up with other young carers in similar situations and similar age groups on a weekly basis.

To be able to go to the project, they have to be five years old and then they go to the project until they’re 17. Although we have experienced and done assessments on people who were younger than that and have some caring responsibility, although they can’t access the project until they are five years old.

Evans: Five years is incredibly young, what issues do they face?

Olsen-Jones: It could be anything from putting the washing in, ‘cos mum’s not able to bend down to the washing machine or mum’s not able to turn the dials on the microwave, so maybe doing that. We had some people who’ve helped mum up the stairs. There’s loads of different situations we’ve come across [of carers] as young as five years old.

Evans: What’s your name then?

Leon: My name’s Leon.

Evans: How old are you?

Leon: I’m fourteen.

Evans: Who do you care for Leon?

Leon: My mother.

Evans: What’s the matter with her?

Leon: She suffers with depression, she’s got anxiety, so I have to go with her to places so she feels safe. I have to look after her and the house. I go places with her like shopping ‘cos she can’t go on her own and I help her clean the house and organise things.

Evans: Do you feel you’re missing out on things because you’re looking after Mum?

Leon: I don’t go out much because I have to look after her but I’ve started going out places.

Evans: What does mum think about the way you look after her?

Leon: She finds me very helpful, it’s a good job that I help her, if not she’d be even worse.

Evans: So what’s it like coming away with other young carers, like we have today?

Leon: I think the Young Carers is a really good operation because you get to go out to other places. You get to be accompanied and you find new friends. This is my first time here and I’ve found two or three new friends already. It’s really good it is, it’s a good way to get out of the house and they also do support, helping your parents and that.

[Background conversation]

DJ: My names DJ and we’re here at something called the Summit Centre. It has a big climbing wall and there’s loads of activities. What we’re doing right now is the team building tasks and it’s a lovely Welsh day, a bit overcast with a slight chance of drizzle and, yeah, we’ll see how it goes.

[To audience] On your marks, get set, go!

Evans: They’re all very shy and quiet at the moment.

DJ: Yes indeed. Probably the first problem that’s around is the lack of communication between these teams, so we’ll work on that and see what happens.

Adrian: I don’t know what any of your mothers or whoever you care for is like but to me no-one can compare with my mother.

Sophie: No, same here or my brother, both of them.

Evans: So you look after your mother?

Sophie: And my brother. My father is not on the scene. I don’t think I would change what I do now.

Adrian: Even though my mother is ill, the only thing I’d do to change things is obviously to make her better, I wouldn’t swap her for the world.

Sophie: I wouldn’t, see? I know my brother’s got autism and my mother’s got depression but I wouldn’t even change their illnesses, otherwise I wouldn’t have the memories I’ve got.

Evans: When you say you wouldn’t change anything because you’ve got all these memories, what do you mean? I don’t understand that.

Sophie: My brother has autism so he can go on forever talking about a specific thing, or something like that and he can do these random things and he does things to his radio up in his bedroom and when you come in he immediately shuts up and shrink down in his chair and stuff like that. And when he’s on holiday he can do completely random things. He’ll be sitting here one minute then he’ll get up and start dancing.

It’s memories like that, it’s the same as my mum, even though she’s got depression, she can have a day when she’s on her arse all day and then one day she’ll suddenly laugh at something on the TV and we’ll laugh for an hour. It’s stuff like that I wouldn’t change, ‘cos if they were ‘normal’, if you get what I mean, I wouldn’t have those memories. I wouldn’t have my brother in the school play spraying his teacher with silly string, you know so…

Adrian: [laughs] I know what you mean.

Tom: That’s every kid’s dream, isn’t it?

Sophie: And his head teacher comes out and says, ‘that’s the end of the play’ and he pulls a face… brilliant! If he didn’t have autism, I’m not saying he wouldn’t do that if he didn’t, but I wouldn’t have that memory.

Tom: Same as you, with all the memories, I wouldn’t change her for the world.

Sophie: I wouldn’t change it anyway ‘cos we wouldn’t get to come here, and this is actually quite fun and I’ve met a load of people that I wouldn’t change either, like Deb, she’s a worker by the way I used to have her in young carers. I don’t regret meeting her for one minute.

Emma: She’s awesome

Sophie: I tell everyone I meet, that I reckon she saved my life, ‘cos when I first contacted her, I wasn’t this person.

Evans: Who’s Deb?

Sophie: She’s a young carers worker. She’s the first key worker I had and when I first came to Young Carers I wasn’t the person I am now. I wouldn’t talk to anyone. I’d literally sit and stare at the wall all day. Then I met Deb and she just sort of takes you and goes, ‘right, you’re gonna do this and I’ll be there with you’ and she brings you out of your shell and, like I say, she literally saved my life.

Adult activity leader: Before we get going on this one, what makes a good team?

Young carers: [shout] Communication, listening skills, understanding each other, all of us knowing what we’re doing in the plan of things.

Adult activity leader: Definitely, that’s a good one, with that in mind, the next challenge is to stand behind these… [Excited shouting] The ball is not allowed to stop moving, if it stops or goes backwards…

Sophie: But the other team stopped.

Adult activity leader: Yes, I know, they shouldn’t have – gotta keep the ball rolling.

Sophie: Rolling, rolling, rolling…

Adult activity leader: Everybody happy?

Tom: I’m not unhappy… [laughs]

Adult activity leader: Well that’s ok. I want you to have a little chat and work out how you’re going to do it, have a little play and I’m going to time you to see if you can do it.

Sophie: I was suicidal when I first came here, I was going through a lot of stuff in school, being bullied because of my brother and mother and then one of the teachers in school recommended Young Carers. When I first went on it, Deb came to my house and I remember she was wearing this top, it had the queen from Snow White, the wicked queen, that’s what she had that on the front of it. And that’s what I remember and [laughs] she’s about the same age as my mum and she’s got the wicked queen on her top [laughs], then she came in.

The first time we went out I was really quiet. I didn’t want to talk to anybody and she took me to the house, the big house, everybody knows that and I met this group of boys who, honest to God, were about the dullest people I’ve ever met. ‘Cos we were just sitting here, we weren’t talking, Deb got up in the middle of the room and said, ‘This is Sophie, this is Jim, Bob, whatever and she got us together and then it seemed like we’d been there forever. I’m still friends with them now, I’m still friends. Everything with this has done a lot for me. I got into College through Young Carers. I got my best friend through here and my first boyfriend here [laughs] even thought that’s a bit embarrassing [laughter].

Sophie: I’ve gained a lot from being on this course.

Adrian: This project does change you.

Sophie: It does change your life

Adrian: My personality was similar to yours – I’d be like, until someone talks to me, I wouldn’t talk to anyone. And then Becky, Debs brought me out of my shell basically and then I met you lot and already in the first half an hour we’ve had a hell of a laugh.

Tom: I was exactly the same, before I started on the project, I didn’t really go and talk to anyone – I just sort of stayed to myself. I’ve been on quite a few of these residentials and other events and I’ve enjoyed it. It’s really made me who I am today, basically.

Evans: Who do you care for?

Tom: I care for my mother.

Evans: What’s she got?

Tom: She got MS (Multiple Sclerosis).

Evans: So what does that mean to you?

Tom: I’m not really sure where to start with it.

Evans: Does it isolate you?

Sophie: I think anyone who cares for someone – it isolates them, no matter what it is.

Tom: Yeah, I suppose it does in a way, yeah.

Evans: I know when I was caring for my father – admittedly, my father was in his eighties and I was in my fifties – the whole focus of your life changes, you can’t actually think what’s changed, but it has. Do you agree?

Young carers: Yeah.

Sophie: Yeah, I’ve been caring for them since I was six. I didn’t realise, I thought it was what every kid does. I think that’s why not many people come forward about it. You’ve got to have someone realise you are a young carer before you do. I thought every kid is doing this – every kid is looking after their mum when she cries. Every kid is helping their mother bathe their brother.

Evans: But how many kids have seen their parents cry, I certainly hadn’t.

Adrian: It breaks my heart when my mother cries, that’s part of the reason I care for her.

Sophie: Yeah, but you do it ‘cos you want to. At the end of the day, you could always go to the doctors and say ‘My mother is ill.’

Adrian and Sophie: And say ‘Chuck her in hospital.’

Evans: I was going to use the word burden, but it’s an incredible responsibility on somebody that young.

Olsen-Jones: Yeah, I think it’s important to stress that lots of young people that we work with don’t see it as a burden, they see it as part of their lives – they’ve always done it. They enjoy doing it. Often carers find they’ve got a strong relationship with the person that they care for because of the responsibility that they take on. It does have an impact on their life, on every aspect of their life but, generally, the young people are happy to do it and feel that they’re doing something valuable.

Evans: The people I have spoken to today, what impresses me most is they seem incredibly mature, beyond their age.

Olsen-Jones: Yeah, they’re really living the lives of adults as young people, because they have to, because that’s the way they are living at home. They are incredibly responsible in many aspects of their life. But of course because of certain responsibilities they’ve got in their lives, they miss the opportunity to be children and sometimes you’ll see the older carers are quite childlike in their ways.

Evans: We can hear it now. [Laughs] But that’s another thing about this week away – they’re allowed to be children.

Olsen-Jones: Yeah, yeah! We encourage them to mix, to socialise with people they haven’t met before. We do team building events where we make sure they’re split up from the people they know, so they develop those relationships with others. They don’t usually get to socialise much as a group, they’re quiet isolated. It’s quite nice to give them the opportunity to just be themselves, forget about any stress or pressures at home and just enjoy their time here. [Young people laughing and playing in the background and discussing the game]

Adrian: My sisters were at school and for some reason – I don’t know why, I don’t remember – I was at home and my mother started crying and we shouted ‘what’s wrong?’And she said ‘my chest feels like it’s caving in’. We rang our nan and she and my sister came up and the ambulance came and she burst out crying, ‘cos she don’t like going into hospital. That’s what got me upset and my older sister comforted me and then when I went down to the hospital in the afternoon and the doctor came in and he basically said it’s touch and go [sobs]. Sorry.

Sophie: It’s fine, don’t worry.

Adrian: Well basically, she was in there for two weeks and the first week it was touch and go and every day I was crying, ‘cos I love my mother too much and wouldn’t want to lose her and I dread the day when that happens.

When I saw her in the bed and she had all this wire sticking in her arm and one in her chest – she had a thing going up her nose and down into her bronchioles and she also had a gas mask on. As soon as I walked in and saw that, I burst out and I had to walk out – I couldn’t see my mother like that.

Now she’s doing fine now she’s back in the house and I’m very happy and when they finally rectify her chest and she obviously gets slowly better.

Evans: How do children come to your attention, do they have to apply or does it get spotted in school that they’re under pressure?

Olsen-Jones: More and more it’s getting spotted in school and that’s because of the training that’s being developed and implemented in schools at the moment due to legislation that’s coming in in Wales called ‘The Carers Measure’. So more and more we’re getting referrals from schools and we get an odd number of different people – nurses, GP’s, friends, anywhere really can make a referral to us. We just need to know their name and address and to know they’re happy for us to pop along, we make contact and go along and do the assessment from there, but anyone can refer really.

Evans: So what do you assess? What’s the process?

Olsen-Jones: So, there’s a difference really between young adult carers – because they come under adult services – and young carers come under children’s services. But the assessment process is basically looking at the family situation, the family’s needs, looking at the carer’s – the young person’s – responsibility in the house – seeing if that’s an acceptable amount of responsibility or not and then putting things in place, in order to support them in their role. And, obviously, if it’s an unacceptable amount of caring that they’re doing, then we’ve got to look closely into that, and we’ve got to get additional and different services in to support that.

Evans: Can I just ask you who you are, what your names are?

Emma: Emma.

Courtney: Courtney.

Evans: You’re both young carers – tell me what that means, who do you care for?

Courtney: My mother, ‘cos she’s disabled, she can’t do anything for herself, she depends on me and my father really.

Evans: In what way does she depend on you?

Courtney: In every way – getting dressed, having a bath, going to the toilet, everything.

Evans: How old are you, Courtney?

Courtney: Fourteen.

Evans: Do you get out to play with your friends?

Courtney: Sometimes I get out, like, on the weekends, when my father is here.

Evans: What does it mean for you?

Emma: Well, I care for my mother and my father – they’re both classed as disabled, they’re both dependent on me. I hardly ever go out, ‘cos obviously, I’ve got responsibilities.

Evans: How important is it to get away with other young carers in a week like this?

Emma: It’s alright like, ‘cos it’s a break but I do so worry about my mother, if she’s coping.

Evans: How did you get involved with the Young Carers Project in the first place? I know you’re young carers…

Emma: It was through my school because they were asking me to do E3 [A scheme providing schoolchildren with extra-curricular activities] and obviously I couldn’t because my mother and father are disabled and they needed me there.

Evans: So it’s the school who put you in touch with the Young Carers Project?

Emma: Yeah, yeah.

Evans: And you Courtney?

Courtney: It was my social worker.

Evans: Your social worker helped you. Are you glad she did?

Courtney: In a way, yeah, ‘cos it’s like a break away from it and things.

Julie Goodfield: Good afternoon all. My name is Julie Goodfield and I’m a home fire safety advisor for South Wales Fire and Rescue Service. My main job is to visit homes within the South Wales area, and generally talk about reducing the risk of fire in the home.

Evans: So what are you going to tell the young carers today?

Goodfield: It’s little tips really to look out for. The first important one is to check they do have working smoke alarms in the property and then we talk about cooking methods and making sure things are switched of etc. and not left unattended. We also talk about what you would do in the event of a fire and [how] it’s good practice to keep exit ways clear, especially having a night-time routine, making sure everything is switched off.

In most circumstances, I would advise ringing 999 and getting out of the property as soon as they possibly could anyway. But things like overloading electrical sockets. A lot of people don’t seem to be aware that… a thirteen amp plug, anything more in there could be a bit of an overload. So it’s general safety tips and advice about keeping safe in the home.

Evans: Is it more pertinent to young carers?

Goodfield: It’s important for everyone just to take on board fire safety within the house and I think for young people it’s good because they can perhaps advise older generations, especially with electrical sockets and that sometimes there is too much amperage being used, especially with things today like mobile phone chargers, Sky boxes, Xboxes and games, ‘let’s just chuck it into one socket and happy days’. But if you’ve got a lot of heat there, it’s good advice again and safety and tips, right we’d better spread that out, rather than causing a fire.

Evans: I suppose one thing you have to get across is, if there is a fire, don’t try and fight it.

Goodfield: Exactly, yeah, yeah, try to prevent the fire happening in the first place, so we discuss issues like cooking methods, candles, plug-in things like air fresheners that are left on, they can actually shatter as well. Get an escape plan in their minds. But in the event of fire, never tackle because it spread so quickly and so fast – we’re talking under a minute. Unfortunately, especially at night-time when it’s not visible, smoke can kill before the actual fire, so it’s always good to test your smoke alarms regular. We do try and say test them once a week but if they just test them regular, just to put their minds at rest that they are working.

Goodfield: Have you all got smoke alarms at home? No?

Young carers: [In unison] Yes, yeah.

Goodfield: How often do you think you should test them?

Young carer 1: Every ten years.

Goodfield: Every ten years !

Young carer 1: Well that’s what the fireman said to my nan.

Young carer 2: No, every week.

Goodfield: That’s true in many aspects, but the ones we give out come with a ten year battery. It’s still good to test them once a week, get into a little bit of a routine. Has anyone been involved in a fire?

Ethan: Me.

Goodfield: Are you happy to talk about it?

Evans: Tell me your name.

Ethan: Ethan Mason.

Evans: And you’re a young carer?

Ethan: Yeah.

Evans: Who do you care for?

Ethan: I care for my mother, she was diagnosed with fibromyalgia and ME (myalgic encephalopathy, previously encephalitis), so she finds it quite hard to go day by day. I have to care for her and look after her and that.

Evans: So how does she rely on you?

Ethan: She finds it hard to get up in the morning. She finds it hard to do simple tasks. Then I have to help her with certain things. I have to help around the house, look after my siblings and stuff, yeah.

Evans: How old are your siblings?

Ethan: One’s eleven and one’s three.

Evans: We just had a talk from the Fire Safety Officer.

Ethan: Yeah.

Evans: You were saying you have had a fire in your house, tell me something about that.

Ethan: In the kitchen, there was an electrical fault and a fire started. I walked into the kitchen and obviously the flames were getting out of control, so I had to grab my sister and get her out of the house, My mum was sleeping at the time because she was unwell, so I had to get her out of the house and I had to ring the fire service to come and put the fire out. Because my mum was unwell, I had to get both my sisters out to try and protect them from the fire.

Evans: Some of the young adults that I have spoken to today have incredible love and loyalty towards their parents.

Olsen-Field: Oh yeah, definitely, It’s like a mother’s love really, but it’s the child experiencing it for the parent. It’s because they care for lots of their needs – they play that parent role to an extent and because of that they’ve got that loyalty there. There’s love there. They’ve got what any parent would have. It’s almost role reversal really, to an extent.

Evans: The education side, sexual health, cooking, fire safety, that all sounds very serious and it is serious but the impression I got, is that is that they’re getting an awful lot out of just being together.

Olsen-Field: Oh yeah, the opportunity for them to get together, meet other people who are in similar situations to themselves and similar experiences, is really essential. Having the adult carers here also shows them what life might be like for them in a couple of years time when they hit that age and it really shows the young carers that they can still continue with their education, they can go to college and life doesn’t stop because of their caring role.

Evans: My thanks to all those involved with the Rhondda Cynon Taf Young Carers Project in South Wales.

Don’t forget that you can still download all the previous editions of Airing Pain or obtain CD copies direct from Pain Concern. If you’d to put a question to Pain Concern’s panel of experts or just make a comment about these programmes, then please do so via our blog, message board, email, Twitter or even pen and paper.

All the contact details are on our website, which is painconcern.org.uk and whilst we believe the opinions and information given on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

There’s more information for and on young carers in Wales at childreninwales.org.uk that’s one word childreninwales.org.uk.

Evans: One last question, how important is it for you all to get together at these residential courses?

Young carers: Very important, very.

Sophie: I’m gonna sound soppy right now but if I didn’t have these lot to cheer me up, I honestly wouldn’t be here.

Adrian: If it wasn’t for this, you wouldn’t know how other people felt and you’d feel like you are the only person doing this. In your case [Sophie] you’d think everyone else does this and it’s normal. .

Sophie: Yeah, I don’t think any of us would be the people we are, if we didn’t come to things like this.

Adrian: If it wasn’t for this, I wouldn’t have the confidence to go to college.

Contributors:

Adrian, Amy, Courtney, Emma, Ethan, Leon, Sophie, Tom, young carers
Kerris OIsen-Jones, Young Adult Carer Development Worker
DJ, Young Adult Carer Support Worker
Julie Goodfield, Fire Safety Officer.

More information:

More information on support for young carers can be found at childreninwales.org.uk
Visit our webpage for young adult carers to listen to more Airing Pain programmes on this topic and find out more about the help available across the UK: painconcern.org.uk/how-we-help/young-adults.

Bringing mind and body together to reduce pain with self-hypnosis

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In this edition of Airing Pain we hear how healthcare professionals can use hypnotic techniques to help people in pain. This is not the hypnosis of stage performances, but rather simple skills that can be mastered by most people.

When patients enter the ‘meditative-type’ state of hypnosis they are able to use the imagination to change the perception of their pain and even reduce its intensity, says retired GP Dr Ann Williamson. More than just relaxation, hypnosis, she argues, gives us access to ‘mind-body links’ that are ideally suited for addressing both the physical and emotional dimensions of pain.

Dr Jane Boissiere, also a doctor practising hypnosis, calls the lack of availability of hypnosis on the NHS ‘a tragedy’. She believes it is the most effective way of addressing medically unexplained symptoms by targeting emotional trauma in a way that puts the patient in control.

Issues covered in this programme include: Hypnotherapy, self-hypnosis, meditation, alternative therapy, mindfulness, CBT: cognitive behavioural therapy, psychology, mirror therapy, neuroscience, neuro-engineering, fibromyalgia, pain perception and mental health.

Paul Evans: Hello, I’m Paul Evans and welcome to Airing Pain. A programme brought to you by Pain Concern; the UK charity that provides information and support for those who live with pain and health care professionals. This edition is being funded by a grant from the Dorothy Howard Charitable Trust.

Harnessing the power of the mind to control or manage pain is something we have explored many times on Airing Pain, be it through mindfulness, cognitive behavioural therapy, mirror therapy or even ground breaking research into neuro-engineering where patients have trained themselves to identify the part of the brain that controls their pain and then reduce that pain. With such innovation, it is tempting to think that only now, in this age of discovery, are we beginning to fully understand the potential of the mind to manage pain but, go back through the millennia, even to pre- history and we find that priests, shamans and witchdoctors have attempted to bring about healing by inducing an altered state of consciousness, in effect, hypnosis.

Now, you might associate hypnosis with entertainment programmes where members of the public are induced to perform weird and wonderful acts of stupidity in front of an audience – that is stage hypnotism, not to be confused with anything beyond the shallow realms of showbiz.

The British Society of Clinical and Academic Hypnosis promotes the safe and responsible use of hypnosis in medicine, dentistry and psychology. Its aim is to educate both professionals and the public about hypnosis and its uses. In the British Pain Society’s Annual Scientific Meeting of 2014, I met Dr Ann Williamson, a retired GP who’s been involved in hypnosis since the late 1980s and who has been training health professionals for more than twenty years. So what is hypnosis?

Dr Ann Williamson: My way of thinking of hypnosis is that it is a meditative type state, I suppose, where you have your normal outside awareness and you have your internal awareness. In hypnosis you focus internally, but within a session that can go up and down, so that somebody can be more aware of what is going on outside and then less aware. It is a bit like reading a good book, you get lost in a good book and you lose awareness of what is outside, but if someone was to call your name or shout ‘fire’, you’d be off and up.

Evans: So how does it differ from meditation?

Williamson: The aim is different – the aim in meditation is to empty your mind and become one with the ‘life force’, God, however you want to language it – in hypnosis, the aim is emotional management of some sort or experiencing a goal. Hypnosis is very experiential – you step into the you that you want to be and associate with it and feel it. It is a much more experiential way of working with something.

Evans: So the me that I want to be could well be a completely fit person.

Williamson: It has got to be realistic. If I am twenty or thirty stone and my goal is to climb Everest, that is not going to be realistic, but when I step into that imagining, I’ll know it is not realistic – the intuitive part of me will understand that. For instance, a pain patient will be wanting to reduce their pain, feel comfort, feel calm, so you can go in the hypnotic state and you can go to places and times when you had those feelings and re-access them. You can link them to things that you can bring to the front of your mind which will then take you back into it.

There is interesting work being done with phantom limb pain by colleagues – I don’t know whether you are aware that one of the treatments for phantom limb pain is the mirror box. Well, what she does is get the person to imagine moving that hand, or that arm, or that leg in hypnosis. And we know from neuro science findings that what you imagine in hypnosis – the same parts of brain light up as in reality or very similar – whereas just thinking about it, it doesn’t. So, there is something there that is giving us access to – if you like – to these mind body links. So hypnosis is more than just relaxation.

Evans: I suppose thinking about being well, being without pain, is maybe wishful thinking – it is thinking about something that is not there and maybe thinking about it, is not a good thing to do anyway because you are trying to imagine what will never happen.

Williamson: That’s why I think it’s got to be tailored to the individual case. I have met people with fibromyalgia, for instance, who have had a lot of pain and been very disabled by it. Giving them the tool of self-hypnosis, using imagery to help reduce the pain directly (which some people can do) and then also to look at the psychological drivers of the fibromyalgia – like anything else, mind and body and it is very interlinked – that can actually reduce the pain, not just through relaxation. It can actually reduce the pain intensity.

We know people can modulate pain intensity from … you know … they can have surgery under hypnosis – some people can, who have got that ability. It is wishful thinking, yes, but if you focus on the pain, then you are just going to focus more and more into the pain. If you focus on what you want which would be comfort or a greater degree of comfort or being more able to cope, feeling more able to take an interest in something outside of your pain, then that will in itself reduce the pain.
Evans: How does this differ in outcome from a talking therapy like acceptance and commitment therapy?

Williamson: I think that any talking therapy, if you are in deep rapport with someone and talking, they enter, if you like, a semi-hypnotic state anyway. So, I think a lot of good therapists are using the hypnotic state, even though they are not aware of it. When someone is in a great deal of pain or a great deal of anxiety, they are already in/or working… their brain is already processing in, if you like, a hypnotic state. That is why hypnosis can be used very effectively in things like, emergency medicine – when somebody is already in that frame of mind. I think hypnosis facilitates lots of different therapeutic approaches.

Hypnosis on its own is just a state of mind – it’s what you do with it that’s important. It is altering the person’s focus of attention and by altering their focus of attention internally in that hypnotic state, suggestions are more readily taken on board because they can experience them, they can feel them. If you like, another way of looking at it, would be a story teller – I don’t know whether you have ever experienced a really good story teller coming in to the room and holding a whole audience entranced – we say it is ‘entranced’, it is the same way – they are all in that kind of hypnotic state at that point – but what they are doing with it is different than in clinical hypnosis. So it is a state we go in and out of, quite naturally.

Evans: Sportsmen refer to ‘the zone’…

Williamson: Yes, being in the zone, same thing.

Evans: … and it’s that business I guess of being able to shut off all the pressures, all that is going on around…

Williamson: it’s just totally focused.

Evans: I’m thinking of somebody kicking a penalty at Wembley.

Williamson: Yep.

Evans: If that were me, the fear of humiliation, of failure…

Williamson: But of course, it’s as soon as you start thinking of that, that will put your performance off, so they learn to be completely focused. That’s why hypnosis and hypnotic techniques are used in a lot of sports and athletics – by a lot of Olympic athletes – because to get that edge, you need to be able to do that and some people are more able to do it than others. Some people find it really hard to actually focus attention but everyone has got an ability – if you use a right-left brain model – if we are functioning normally in our conscious waking state in our left brain then going into a relaxed state or focus of attention tends to be a right brain process…

Evans: I’ve got one brain and I know it’s got two sides, what’s going on?
Williamson: If you think of the left side of the brain as our intellectual, rational, reasoning, conscious awareness part (I mean this is a model, it’s not the truth – it’s just a way of looking at things) and the right side of our brain is the emotional, creative, intuitive, memory part.
Take, say, a phobia of a spider – logically it is totally crazy to be so terrified of that little spider down there, but telling myself that, doesn’t really help – I still get that overwhelming feeling.

We know some of the brain pathways of why that happens but to be able to work with both types of processing, you need something that links them and one thing that links is visualisation. You can paint a word picture and the right brain thinks in pictures, symbols, metaphor and the left brain uses words. So, we can talk if you like, to both types of our processing, to our heart and our head by using imagery – I mean if you think of all the great teachers, they use parables, stories, metaphor – why? Because it is a good way to get something across.

We tend to very much to think in the cognitive side of things but actually, the bit that drives us more than anything is our emotion part – so we need something that will work at both levels, that’s where I think hypnosis and that type of approach works.

Evans: If I were to draw a diagram of me, I would think – tell me if I am wrong – that I would do all my reasoning on this, my left hand side but the real me – the emotion, the arts, what makes me, me is on my right side and somehow you need to join those two sides together.

Williamson: That’s what the aim of all therapy is, isn’t it? To marry and make links between our intellectual understanding and our emotional understanding, to make those links, to make those processes work together. If you are in great pain, or if you are in great distress, you are in that emotion and you have not got access to your adult, rational, cognitive processing. You are in to the emotion, in to the feeling and you need both.

Evans: It was rational to be afraid of spiders in our evolutionary past…

Williamson: …possibly

Evans: …and that still stays there, which links in with fight and flight and pain mechanisms…

Williamson: …yes

Evans: So, how does hypnosis come into to break some of those things?

Williamson: It depends on the causation of the pain, to some extent. I mean the fight and flight – obviously, if you are tense and are in an adrenalin state, then your pain is going to be worse or your perception of pain is going to be worse, so anything that will reduce that, would be helpful, but then, you’ve also got the psychological underpinnings of pain. Pain isn’t just tissue damage or organ damage, it’s all the rest, it’s the whole pain neuro matrix that gets involved and hypnosis can help psychotherapeutically. Using the hypnotic state can kind of help people to explore and resolve whatever ever might be underlying those problems, giving rise to the pain.

Evans: Dr Ann Williamson of the British Society of Clinical and Academic Hypnosis. Dr Jane Boissiere, also of the Society, was a GP for twelve to thirteen years. She was also a house practitioner in psychiatry.

Dr Jan Boissiere: When I was trying to persuade my GP patients to come and see me at my day psychotherapeutic hospital, I would say to them: ‘Imagine the brain is a room and you have a cupboard at one end – we all have a room and a cupboard – and what we do, during the course of our life, we put all the rubbish in the cupboard, we close the door and we live in the tidy part of the room. Then one day along comes another bit of rubbish, it might not be that big a piece of rubbish – you try to fit it into the cupboard and there is no more room. The cupboard door bursts open and you have rubbish all over the room and you are in a state of panic, anxiety, depression, whatever – and what you do is you try to put all that rubbish back in the cupboard and close the door tight. You might manage to do that to begin with but you are sitting on top of a volcano. So, if you have too much rubbish in your cupboard, what you need to do is sort it out.’

And that’s what we used to do at the day psychotherapy hospital – we would have to spring clean. Now, spring cleaning is not a good job, alright, they have to pull out all the rubbish, sort it all out, throw away or put it back tidily, because obviously you can’t get rid of those things. But if you put it back tidily, then you will have more room in that cupboard for all the other rubbish that is bound to occur during the course of your life. So, that was how I would explain what we were going to do at the day psychotherapy hospital. But spring cleaning is incredibly messy.

When I stopped being a GP and doing the psychiatry, I was really missing seeing patients and it was then that I discovered hypnosis and what I discovered with hypnosis was that, all this rubbish that was in the cupboard, you did not have to pull it all out, sort it all out and put it back. It was so much easier than that, so much easier, it was like having an ultrasound scan, because all you had to do was ask the unconscious mind, which bit of rubbish was causing the trouble, it would sort itself out with a few clues and tips, whatever – and all would be well. You did not need to pull all this rubbish out, you didn’t need to cause a huge mess in the room – you could actually go straight to the point that was causing it.

Often, it would be something very minor, you know, because my training was in psychiatry, I would do a full psychiatric history before I would do anything at all. So you do the full psychiatric history, you know, some people have had horrendous lives, a huge amount of trauma and distress. And you could come up with all kinds of theories or what might be causing their symptoms and very often you would be wrong. It would be something, much smaller, minor, which you had not even considered to be important, had caused the upset or distress.

So you cannot always make assumptions. We think that our frontal lobes are in control, but actually it is your unconscious mind often, that is in control. So, if you have a behavior or a symptom that you do not understand, you do not know what it is about… I would say to patients that were referred to me – ‘if you have this symptom and you don’t know what has caused it, if the symptom goes away and you don’t know why it has gone away – will that matter? No.’ In other words, you don’t necessarily need to know what it is. Sometimes, the unconscious mind does not want your conscious mind to know what the problem is.

Evans: The analogy of rubbish in the cupboard is something that we can all get hold of but, what constitutes rubbish?

Boissiere:Traumatic events, deaths, we can go with very major things, as I say, sometimes you will find… being bullied – events that have upset you in the past.

Evans: I would say that the things that might upset me, are things that I have done that are out of character, say when I’ve lost my temper with somebody in public and I don’t do that – those are the things that stick in my mind.
Boissiere: And that’s because you have not adhered to your own standards. You have set yourself a standard and if you break that rule, that you’ve set for yourself, then you beat yourself up about it. Now, you could be more forgiving, you could find ways of not being quite so angry as well, you could find out what it was that triggered you to behave in that sort of a way. There are all sorts of ways that we could help with that. You could look at what the triggers are for you losing your temper in that way and that is fascinating – I love dealing with anger, because repressed anger is not good for you.

Evans: In terms of somebody with persistent pain, the anger comes from everybody, the doctors, the employers, life, the politicians, the health service ….

Boissiere: Absolutely, there’s nothing worse.

Evans: Everybody is to blame for my condition.

Boissiere: Absolutely, absolutely, I fully understand – if you have been through the mill, with fibromyalgia, the degree of anger with the lack of understanding, the lack of people dealing with it appropriately, not knowing the effect of the heart-sink – are you with me? – so that if you go to the doctor and, you know, if we’ve got a simple diagnosis – ‘I know, you’ve got wax in your ear’, and we can take the wax out – we’ve got a happy patient and a happy doctor, everybody is happy. We have got a diagnosis and we have got a treatment and everybody knows where they are. Once you are into the realms of the medically unexplained, once we are dealing with symptoms that don’t fall neatly into that sort of category, you have got the doctor feeling miserable and the patient feeling miserable – then we are into a very negative sort of cycle here.

Now, if I saw patients, who had defeated other practitioners – shall we say – I was always delighted to see them. I’d say ‘come on in – this is great – [laughing] because we are going to get some solutions now.’

I used to say that I loved doing psychiatry for two reasons: I meet the nicest people and I love watching people get better. It is a joy treating people, having discovered these sorts of ways of accessing the part of the mind that can actually help you heal yourself.

It’s the way you deliver the message. If you go to the doctor and the doctor says ‘I can’t find anything wrong with you.’ The patient thinks, ‘They can’t find anything wrong with me, there isn’t going to be a treatment – that means I am going to suffer forever.’ But there is a possibility of you being completely normal, if we can just find some answers.

Now, most things are multi-factorial – a bit of this – a bit of the other – what we have to do, is get all the factors going in the right direction. When you see somebody who has been through the mill, you end up with a vicious circle with everything going in the wrong direction, all spinning in the wrong direction. What you have got to do, is get in there, get all the factors right and get it spinning in the right direction.

If you get it spinning in the right direction, then you can start feeling good and better but there is a part to be played – I am not saying that I have all the answers to all these things – we have an important part to play and unfortunately hypnosis is completely underutilized by the NHS. It is a complete tragedy.

Evans: So how do people get to see a recognised hypnotherapist?

Boissiere: Within the NHS, it is virtually impossible – you can’t even use the word ‘hypnosis’. Some people who have even been trained in hypnosis, as I understand it, can’t then practice it within the NHS. They will say that it is not, for example, for the treatment of post- traumatic stress disorder, we have got lots of evidence but we have not got sufficient, for it to be considered strong enough to be an evidence-based treatment. But if you don’t have enough people doing it, you are in a catch-22.

What you’ve got to be able to do, is to be… most of the NICE guidance for pain, for example, they say more research is required – how can you do that research if you don’t have enough people practicing it and they can’t get funding to come on the courses? Because it is, hypnosis, it is considered an alternative therapy. Now, I don’t know why we are considered an alternative therapy, we have been around for two hundred years. Freud started with hypnosis then decided maybe not and everybody became very frightened of the unconscious – there is nothing to be frightened of at all, really nothing at all. All hypnosis is self-hypnosis and is about you being in more control, not less control. OK, we think that it is the frontal lobes are the bit that is controlling everything, it is not – as we go back to what we said earlier, about behaviours – that you’ve got behaviours that you don’t like and that you can’t help and you just lose your temper and you don’t want to….

Evans: It’s only happened twice, but sadly I can remember each one.
Boissiere: [laughing] Indeed, but forgiveness is one thing and knowing how to handle that differently is another one. It is not just that, certainly, from the repressed angle point of view, you might be so busy, trying not to explode, that won’t be doing your pain any good.

Evans: Dr Jane Boissiere. So what approach would a health professional practicing hypnosis take with a new patient.

Williamson: Well, if a patient came to me and wanted hypnosis for pain relief or pain management, we’d talk about it first and talk about what it is and what it isn’t and kind of… dispel misconceptions, because people often think of hypnosis as a magic wand and it isn’t. It is a brain state that you can utilise to help yourself develop skills and abilities to help you manage pain.

Evans: Well, actually most people would think of hypnosis as a music hall act.

Williamson: Exactly

Evans: That you can make me run around naked as a chicken
Williamson: Well, only if you wanted to [laughing]
Evans: I don’t.
Williamson: No [laughing] and only if you’re a good hypnotic subject because we all have different hypnotic ability in the same way that we all have different musical ability.
Evans: So, this is not stage hypnosis, I will be conscious.

Williamson: You’d be aware of whatever is going on around you, then if you were going more focused internally, you might get less aware. If I am doing a session with somebody and somebody opens a door or the phone rings, it disturbs me more than the person I am working with, very often. The first stage obviously, would be taking a history and finding out about the person, what they like, what they dislike, because people very often, have used kind of semi-hypnotic tools already without even knowing that they have done it. I worked with one guy once, who said, ‘when I start to get stressed, I sing my tune in my head’. He had this little tune – he was a musician – he did this tune in his head, so he already had a link to feeling calmer. People often have things that they do, that help them already and hypnosis can help them more.

They often don’t feel any different in the hypnotic state than in the awake state except that they are more focused internally. You see when people come out of the hypnotic state, it takes a moment or two to re-orientate back into the here and now. One uses all sorts of things with people. It is not just a question of getting them to access a calm and relaxed feeling which you can do – you might get them to use imagery of a special place, that they would love to be which would be calm and relaxed, which could be imaginary or it could be real. You could get them to imagine what their pain or discomfort looked like and then, if they could go in and make a change, which would make it more comfortable, what would they do – and that can often help.

You can have classic imagery, turning dials down or going to your pain control centre in the back of your mind and turning the lever down more towards comfort, certainly not in the first session, but it might be the second or the third session that I would work with somebody to see whether there is anything psychological underpinning their pain that they need to address or that they want to address, because they might not want to. The important thing is giving the patient tools which they can then take away and use.

I give them the kind of metaphor of a child. Anyone who has had children knows that a toddler will be clamouring for attention just at your busiest moment in the kitchen and you say ‘go away, mum is busy’. And what does the toddler do? Clamours even louder until you give it attention. Well, your pain can just whisper as long as you are aware when you need to give it attention, so instead of being, kind of a seven or eight out of ten, it can be two or three out of ten.

Evans: So instead of grabbing you by the throat, it can just tap you on the shoulder.

Williamson: Yes, and you can pay attention to it and do what you need to do, to keep yourself comfortable.

Evans: That’s Dr Ann Williamson of the British Society of Clinical and Academic Hypnosis.

Don’t forget that you can download all the previous editions of Airing Pain or obtain CD copies direct from Pain Concern. If you would like to put a question to Pain Concern’s panel of experts or just make a comment about these programmes, then please do so, via our blog, message board, email, Facebook, Twitter or pen and paper – all of the contact details are at our website painconcern.org.uk.
Whilst we believe that the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

So for those wanting to find out more about hypnosis – be you a patient or medical professional – where should you look for advice?

Williamson: Our society, the British Society of Clinical and Academic Hypnosis believes that you should only treat with hypnosis, things that you can treat without hypnosis and I think that is a really good safety guideline. So, someone looking for someone to work with using hypnosis needs to find someone they would be going to anyway, like a physio or a doctor or whatever.

Evans: And as you were saying, members of the British Society of Clinical and Academic Hypnosis, they are practitioners in other areas as well?

Williamson: They are all working health professionals, yes.

Evans: So what standards, should people with chronic pain look for in choosing a hypnotherapist?

Williamson: You need to find someone who has some knowledge or your condition I think. You see hypnosis is very easy; it is what you do with it that is more difficult.

Evans: I can find any number of hypnotherapists in yellow pages or on the internet.
Williamson: You need someone who is either a psychologist or a doctor or certainly someone who is UKCP accredited, something like that – United Kingdom Council for Psychotherapy.

Evans: For health professionals listening to this, where should they go if they are interested in using hypnotherapy?

Williamson: Well, if you go on to our website, www.bscah.com, you will find lots of information there. You will find information on our training courses which are around the country. Usually the foundation training is three weekends which gives a basic grounding in hypnosis and hypnotic techniques and the third weekend we tailor to whoever we have participating – so if we have got a lot of dentists, we’ll get a dental trainer in, if we’ve got a lot of anaesthetists, we’ll get an anaesthetist who uses hypnosis – so it is tailored to the people that are attending.

Contributors:

Dr Ann Williamson, British Society of Clinical and Academic Hypnosis
Dr Jane Boissiere, British Society of Clinical and Academic Hypnosis.

A research study carried out by Pain Concern has identified a range of common barriers which can make the facilitation and adoption of self-management of chronic pain more difficult.

The study focused on the participants’ experiences of primary care and data was gathered from people living with chronic pain, carers and a wide range of primary care healthcare professionals. The study highlighted a range of commonly occurring barriers including those formed during one-to-one interactions between patient and healthcare professionals and those imposed by the constraints of the wider NHS organisation. The often lengthy and inconclusive patient journey towards diagnosis and treatment, the emotional impact of pain, the need for ongoing support and a purely medical approach were also highlighted as potential opportunities for barriers to form.

The report ‘Barriers to self-management of chronic pain in primary care’ is the first phase of a two-year project funded by the Self-Management IMPACT Fund and the Edinburgh and Lothians Health Foundation, which aims to advance the primary care management of chronic pain. The findings of the research study will be utilised in phase two of the project, running through 2015, to develop and pilot resources which may help to reduce some of the barriers highlighted in the initial research.

The full report and findings can be found here.

For more information or if you have any questions about the study, please contact Katy Gordon at Pain Concern – info@painconcern.org.uk, 0131 6695951 or Pain Concern, Unit 1-3, 62-66 Newcraighall Road, Edinburgh, EH15 3HS

Bringing mind and body together to reduce pain with self-hypnosis

This edition is funded by a grant from the Dorothy Howard Charitable Trust.

In this edition of Airing Pain we hear how healthcare professionals can use hypnotic techniques to help people in pain. This is not the hypnosis of stage performances, but rather simple skills that can be mastered by most people.

Contributors:

Dr Ann Williamson, British Society of Clinical and Academic Hypnosis
Dr Jane Boissiere, British Society of Clinical and Academic Hypnosis.

Making pain patients’ voices heard across Europe and changing the prescribing culture

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Almost 100 million EU citizens have chronic pain, but there is still much progress to be made in improving diagnosis and treatment. Pain Concern’s Rowena Jacobs attended the fifth Societal Impact of Pain symposium to find out how patient groups, healthcare professionals and policy makers are coming together to push pain up the agenda.

We hear about a successful initiative to change the culture around opioid prescriptions in Italy and the problems facing patients across the continent due to an excessive fear of drug dependence, while Northern Irish representatives explain how the Painful Truth campaign has brought the patient experience of pain home to healthcare professionals and policy makers, leading to greater recognition of pain.

Pain specialists at the forefront of the campaign for better care explain why education and awareness raising is still such an important issue and Lars Møller, representing a Danish patient group, recalls his struggle to get treatment for pain in the face of ignorant healthcare professionals. Finally, people in pain are urged to get involved in the fight for better pain management services by putting pressure on politicians.

Issues covered in this programme include: Medication, drugs, prescription, misdiagnosis, policy, misconceptions, educating healthcare professionals, opioids, raising awareness, funding of pain services, GP, patient voice, legality, controlled substances, dosage, chronic primary pain, pain as a condition in its own right, research and stigma.

Paul Evans: Hello and welcome to Airing Pain, a programme brought to you by Pain Concern, the UK based charity working to support and inform people living with pain and healthcare professionals. I am Paul Evans and this edition has been funded by a grant from Grünenthal.

Chronic pain affects almost 100 million European citizens and that includes fifty per cent, half, of the older population. It causes 500 million days of illness per year, with a cost to the European economy of more than 34 billion euros. In November 2014, the European Pain Federation (EFIC) held its fifth symposium on The Societal Impact of Pain in Brussels with the aim of raising awareness of the impacts that pain has on our societies, health and economic systems. Now those statistics are mind-boggling – perhaps too large to comprehend. Put another way, there are 100 million individuals who will have their own personal stories of how pain has impacted on their lives, the paths they have taken or failed to take, to receive adequate treatment or support. Lars Møller from Denmark has been a pain patient for seventeen years. He is Vice President of the Danish Association of Chronic Pain Patients and a member of Pain Denmark. He spoke to Pain Concern’s Rowena Jacobs.

Lars Møller: When I was a little boy, I was always doing sports and stuff, I couldn’t sit still. When I was around eighteen years old – I did a lot of windsurfing and athletics. One day after jogging and weightlifting, I was cycling up a hill and suddenly I felt like this burning pain in my shoulder. I went to the doctor and he checked me out but he couldn’t really find anything and I kind of learnt to live with it. Actually, I started playing tennis with the left arm and started writing with the left arm but then came pain in the left shoulder. Two years later, I was in Australia, doing windsurfing training and when I came back, I was out doing some try-outs and I did a big loop and when landing it, I had the same pain in my forearms but this time it was much worse. I could not sleep. At that time I started a sports course at University and we had to do a lot of physical things – after one year, my whole life broke down – I could barely walk down the stairs. I was thrown around the health system – they could not really measure or see anything. They found some unspecific things but could not give me a condition.

Evans: Now Lars Møller’s story of frustration will be familiar to many of the 100 million Europeans living with chronic pain. Chronic pain as opposed to acute pain is continuous, long term pain of more than twelve weeks or after a time that healing would have been thought to have taken place after trauma or surgery. Hans Kress is Head of Department of Special Anaesthesia and Pain Therapy at the Medical University of Vienna. He is a past President of the European Pain Federation

Hans Kress: Our problem is that even physicians, even healthcare professionals, even university teachers in medicine simply think that chronic pain is nothing else but a persistent acute pain due to another chronic disease. When you have this misunderstanding, when you misinterpret chronic pain as being nothing else than a prolonged acute pain, then you will not understand the problems of your patient, you will not understand that treatment is different and finally you will not be able to treat the patient in a proper way.

When you have this wrong belief, then of course you will accept and you will expect that when the underlying other chronic disease is properly treated, the pain will automatically disappear. That means that when you no longer find the symptoms and the signs of the underlying disease, you believe there cannot be any pain any longer. If the patient still tells you that, ‘I am still suffering from chronic pain’, then many healthcare professionals blame the patient of exaggerating, of malingering, of being a hypochondriac.

That is a real problem for the patient who feels not understood, who feels really neglected – it is also a problem for the whole healthcare system because then such a patient will produce a lot of additional costs, not only within the healthcare system but for the whole of society because the patient still has pain and because of this pain, he will continue to look for a solution, to consult other physicians, to go to hospital, to undergo a lot of unnecessary but very expensive diagnostic or maybe even surgical procedures. So, one of the problems is to communicate to lay people as well as to healthcare professionals that you cannot see pain – pain is not visible – you cannot objectively measure pain but nevertheless when the patient tells you, ‘I am still in pain’, this is a fact.

Møller: I actually ended up with very bad depression and anxiety attacks. I gave up on the public system and went to New York. I was given some herbs there which gave me anxiety attacks and on return I was committed to a psychiatric unit and was given electro shocks. I was there for half a year. I kept saying to them that they had to give me something for my pain but they kept giving me antidepressants. They said the depression was the cause of the pain but I knew that it was the pain that led into depression. It seemed like they were blindly trying to find a somatic reason, like a physical reason, and of course you should always do that but you have to, in the meantime, start some form of treatment or guidance – I did not get any help.

Every time I encountered a new doctor, they were really arrogant because they did not find anything and when I tried to tell them I did not care about the diagnosis, I just needed some help with the pain, with being able to sleep, being able to go to school, being able to go shopping/buy groceries… But it seemed like they had blindfolds on – they just focused on a diagnosis.

Kress: We have to educate the physicians of the future so that they understand the difference between acute and chronic pain and that the treatment concepts for chronic pain completely differ from acute pain. Of course, we have also to educate our politicians and the decision makers in our health system because the decisions are not made by physicians in our healthcare systems – the decisions are made by regulators, by administrators, by politicians. They must understand what it means to properly treat chronic pain patients and that it finally will even save resources that can then be used for other things and other purposes.

Evans: Dr Hans Kress of the Medical University of Vienna talking to Pain Concern’s Rowena Jacobs at the 2014 European Pain Federation’s Societal Impact of Pain symposium in Brussels.

Professor Giustino Marassi is a pain doctor in Italy:

Giustino Marassi: I appreciated very much the discussion about educational and cultural approach. Those are two completely different things in my opinion and I was a little bit impressed that the audience this morning voted that the most important aspect is education. To me, the most important aspect is culture because education is just one small part of the culture – nothing else than this.

To give an example, which is very clear, in 2000 in Italy, every doctor had received clear education on the effects of opioids, the efficacy, the side-effects, etc., etc. However, we were still in a moment of our history, like it is for many other countries where we had this concept of opiophobia deriving from an old, old story that was the war of the opium in China… that had completely confused the mentality of the doctors – putting together the use and abuse of opioids for addiction and the use of opioids for therapy, which are two completely different things.

At that time, a doctor in Italy, did not have (as it is in many other countries still today) the possibility to prescribe opioids. First of all, we just had morphine (injectable morphine) as a drug and it was almost forbidden. It was used just in very exceptional cases, which was stupid, completely stupid, because, we need opioids to care for pain. So you cannot oblige people to prescribe opioids on a [triplicate] form with completely different rules inside of the hospital law, outside of the hospitable law.

At that time, if a doctor was found with a vial of morphine in his bag, when he was going to visit a patient at home, he could have been arrested, because it was forbidden to carry out the opioids. This was the consequence of a bad culture. Since then, we have made many, many, many steps forward and that is why we now have a completely different cultural approach.

But, going back to my previous topic, doctors did not know at that time, less on the use of opioids than what we know now – this is education, which is something different. So, you can have a good education on the use of drugs, but you can have a completely mistaken cultural approach and so you don’t do anything.

Evans: Italy’s Giustino Marassi. Now cultural barriers which stop people who need controlled medicines like morphine for their pain is an area of research for Dr Willem Scholten and his team. They analyse the legislation and policies of twelve European countries from the Baltic States in the north to Greece, Turkey and Cyprus in the south.

Willem Scholten: If you have so many barriers, it is like a water pipe where you have twelve valves or more in it and the water starts running, only after you opened the last one. So it is very important to have a good analysis and to take away all these barriers.

Legislation barriers can be that the law says in some countries, that a patient can get the medicines only for seven days at a time – when you are a chronic pain patient, it is quite a burden to go after new prescriptions every seven days. Sometimes it is even worse, because you can solve this maybe, by having the doctor prescribe multiple prescriptions at a time, but if there is also a limit on the validity of the prescription, then you need to go to both the doctor and the pharmacy every so many days.

Other things are legal limits on the dosage and legal limits that are lower than sometimes needed for patients. There are limits on who can prescribe – pain is almost in any medical specialty so every medical doctor should be allowed to prescribe. Of course, he should make sure he has the knowledge of how to treat pain – once he is knowledgeable on the topic, he should be able to prescribe. In many countries, it is only an oncologist or only a GP who is allowed to prescribe and other doctors are not allowed to do so.

These are the legal barriers but what we experience also – in many countries the people there told us – that the medical education on how to treat pain is limited just to two/three hours. The people who get really good education in pain treatment are the veterinarians, so our cats and dogs are better treated than we are treated.

Another issue is the attitudes, some people think that they will become dependent immediately when they are treated with morphine for their pain but actually, it is a very low percentage of people that become dependent on these substances and then we can treat them and help them to get off these substances – it is not the end. When you are for a long time in serious pain at that moment the symptoms should be treated, instead of not being treated because of a fear of becoming dependent on something. That likely will not happen.

The Italian initiative is another sign that the pain management is getting more and more important in politics. Also, last summer, the World Health Authority adopted the resolution recognizing that people have a right to health – that is a human right. That right to health is served by having good access to pain medicines. And the Italians have been building forth now on that resolution. Also at the same time they introduced a law for their own country, but I want to stimulate that other countries also take measures. I think that is a very positive sign but other countries in Europe will need to pick up because, finally, it is the country that decides. And Italy can tell others that you need to treat your patients well – but the country’s role is to create the conditions for being able to do so. Of course, being as it is a human right, the patient can always go and file a complaint with a human rights body, either at a national or international level. Unfortunately, the large majority of patients just let it go.

Evans: Dr Willem Scholten. Neil Betteridge is Vice Chair of the Chronic Pain Policy Coalition – a forum that brings together a wide range of professional bodies, patient organisations, including Pain Concern, parliamentarians and industry representatives in the UK. It works closely with an all-party parliamentary group in Westminster.

Neil Betteridge: One of the things, that is very important to get the support of any politician or policy maker is that, if they listen to you, are they confident that you are representing the whole community or is somebody else in chronic pain going to come along tomorrow with a different agenda? The more we can reassure them that we are speaking with one voice and that there is a consensus behind what we are saying, then that is the thing that gets you off to a fantastic start – that is a big green light.

Therefore, I hope out of today’s event, The Societal Impact of Pain meeting here in Brussels, that one of the things that we drive towards is a more focused and prioritized agenda with maybe one or two key messages, key requests that we want to take to our policy makers. If we are then consistent, same messages but different messengers (different people doing it) but the same things being requested at local, national and international level, we are far more likely to be successful and effective. That is the duty we owe to our patients – to be effective.

Personally – and I think to an extent, I am speaking for the coalition – we need to be clear about our evidence base – numbers affected – but there are so many numbers, we need to choose the ones that will have the most positive impact. As I mentioned on the panel discussion here at the meeting, it is easy to use the big numbers because we want so many people to be aware that this a massive problem. But there is a danger there – a risk that the numbers might seem so large that surely, if everybody is affected, it can’t be that serious. Or the other danger is that if the numbers affected are so big – ‘Well, I’m a politician. I’ve only got a year left in my post. What can I do?’ – so they don’t do anything.

So, I believe, yes, it is important to articulate the prevalence – of just how many people are affected – but then quickly move to more specific groups of patients, where there are specific solutions that we can offer. I think we need to get the evidence base right with statistics, but everybody using the same statistics to support the messages.

I think we need to develop what we believe, best practice looks like and I am not speaking just about pain medication there – that’s important, of course – I am also talking about how structured self-management can be brought into the pathway; I am talking about the undergraduate training that is needed. If we can recognise, if we can describe what best practice is and all of the stakeholders – from patients to clinicians – all agree on that, then we have got something to lobby for. As long as we are taking rational arguments with evidence behind them, then that is the thing that is going to make us successful.

I think this community itself has got a job to do, because at the moment, I am not sure whether, at the European level, we could take that sort of consensus to the policy makers. If I am right in that, we have got some urgent work to do because we might win the support of individual policy makers and then not have the solution to give them and that would be catastrophic.

Evans: Neil Betteridge, Vice Chair of the Chronic Pain Policy Coalition in the UK.

Health care is of course devolved to individual nations within the UK. In Northern Ireland the Patient and Client Council provides a powerful, independent voice for patients, clients, carers and communities on health and social care issues. You can hear more about their work in Airing Pain programme number 43 which you can still download from the Pain Concern website and that is painconcern.org.uk. Louise Skelly is its Head of Operations:

Louise Skelly: A few years back, a number of patients came to us, talking about their experiences of living with chronic pain and also their experiences of the health and social care system in Northern Ireland. Within the Patient Client Council, we linked up then with the Pain Alliance and we recognised then that this was a voice that had not been heard in the system, very much an invisible voice in the system. We set up a steering group made up of, not only of clinicians and people from the Patient and Client Council, but also of patients and we set out on the journey of going out and finding out what it was that does not work for patients across the province. That culminated in the publication of the Painful Truth which came out early last year. We then issued that widely to decision makers across the system. The Minister launched it. At its launch, he announced that chronic pain was to be recognised as a condition in Northern Ireland. That was a fairly major step forward.

The Painful Truth made ten fairly significant recommendations and as we sit at the moment, seven of those have been accepted and some of them partially accepted – so we are still working on a lot of the outcomes of the Painful Truth.

Evans: Louise Skelly, Head of Operations of the Patient and Client Council in Northern Ireland.

Dr Pamela Bell is Chair of the Pain Alliance of Northern Ireland:

Pamela Bell: I think that this has been a most remarkable survey – I know of no other that is quite like it. First of all, this was a voice from across our population, of all those who suffer from chronic pain, not just focusing on those who attended a Pain Clinic or people with one particular type of pain, but right across the population. It was very large and that reflects the enormous PR campaign that there was to raise awareness that the survey was going on, involving quite a large number of patient support groups and charities in focus groups to help to inform the overall structure and style of the report.

It has just been such an unusual and unique report, which, if not exactly opening our eyes to things that are new, in terms of problems that people have when they live with chronic pain or really showing us particularly where the gaps are in the services for them, but it has just coalesced everything into one major report where we have had both statistical analysis allowing us to present to our population and present to the members of the legislative assembly, if you like, the facts and figures of chronic pain.

I think more importantly, is what has come out of the qualitative analysis – those patient stories, have really made clinicians, carers, politicians sit up and take notice. It has been hard to listen to – some of the stories are extremely poignant and some of the messages for healthcare professionals are not easy to listen to. It would be lovely to say that we were doing a really good job, but if we knew we were doing a really good job, there would have been no need to do this survey and to publish this report. So we have to listen to where we are falling down.

Part of that is accepting that people have pain – it may not be very easy to diagnose, it may not be very visible, but it is nonetheless real and has a very real detrimental effect on their physical, their emotional health and their financial health too. I think, by getting those stories out there, there are a lot of people for whom those stories will have resonance; they recognise that they are not alone and, hopefully, be not quite so stigmatised.

This is something that we continue to want to do – we want to continue to engage with a variety of patient groups, but particularly those patient groups where we have identified that perhaps the services that they have are not now, currently, as good as the services that they used to have, because that gives us real power to go and say to those who are responsible for commissioning and delivering our services: ‘why is this happening? And these people have a very real need – can you help us to do something about it? Can we help you to make the services more appropriate to them? Can we help you (this is particularly the role of the Patient Client Council) to engage with our commissioners and with those who deliver our services to make sure that your voice is heard in all of this?

Evans: Dr Pamela Bell of the Pain Alliance of Northern Ireland. You can read more about the Patient and Client Council’s work in Northern Ireland at their website – patientclientcouncil.hscni.net (‘HSCNI’ stands for health and social care Northern Ireland). Before we finish this edition of Airing Pain, I’ll just say that we at Pain Concern believe the information and opinions expressed are accurate and sound, based on the best judgements available. You should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf. Don’t forget that you can still download all editions of Airing Pain from painconcern.org.uk or you can get CD copies direct from Pain Concern. The last words from the European Pain Federation symposium on The Societal Impact of Pain go to the Federation’s President, Dr Chris Wells. He is speaking with Pain Concern’s Rowena Jacobs:

Chris Wells: Twenty per cent of the population have pain and that actually means 100 million people in Europe. Now, they are not all in severe pain – of course not and they have not all got disability from that pain, but a significant number have got pain and disability and reduction in quality of life, and they are voters – they need to vote and we need to link up throughout Europe with all the different people, lots of patient groups and actually use the patient groups to inform politicians and in particular to mould policy.

For instance, we were talking today about the fact that in the UK, if you have back pain, you are supposed to be seen by a multi-disciplinary team within six weeks and two of the patient groups said, ‘we did not know that’. They should know it and they should tell all their people and all their people should explain that this is what should be done. If you get acute back pain in England, you should go to your GP and say, ‘this is what is supposed to happen’. The GP does not know either, so do it.

Only, four per cent of patients attending with pain when they first have their diagnosis got any information – that is awful – it is all there – it is all on the internet. So we should make sure that there are good sources on the internet of informed communication. If you can do that, then patient groups can inform each other about this and it could be viewed.

People have criticised GPs and said that these GPs are a health risk. The problem is not that the GPs are necessarily a health risk – they do not have great tools – but unfortunately, non-steroid drugs and the opioids and the other drugs that we use for pain don’t work particularly well. So they know, when they have tried one or two simple things on the patient, it is going to be a long and hard road. Of course they don’t really want to see the pain patient because they don’t really know how they can help them. If you come in with a sore throat and a nice suppurating mass in the back of your throat, the GP is delighted: he puts you on antibiotics; he knows if you see him again, you will say, ‘oh thank you doctor, you are wonderful’. That is great, but when somebody comes in with back pain, it is not quite so easy – ‘we’ll put you on these drugs’ – then you come back and say, ‘well, these gave me side-effects and those didn’t help’ – he doesn’t really want that hassle, so we have got to help them.

We have got a difficulty in the UK with what works. We have got a difficulty with access because we do have multi-disciplinary teams, physios… who are very good. I work in Liverpool and Bolton also – it is a great team there: they see the patients; they help who they can with physio, with exercise; they refer them to orthopaedic specialists if there is any suggestion of surgery or anything else might be required; but they also refer them to the Pain Clinic – so, I actually get patients in Bolton, with eight-week, ten-week histories of pain. Those are the ones who I look at. When I look at my results, everyone else has got much better results, but the ones with five-year history, my results aren’t as good. Early assessment, early management, prevention of chronicity is much better in the future for quality of life and actually that saves money. If we could just spend a little and modify the pathways, then we save money in the long term. This is what all politicians have to do.

Contributors:

Lars Møller, Vice President, Danish Association of Chronic Pain Patients
Prof Hans Kress, Head of Department of Special Anaesthesia and Pain Therapy, Medical University of Vienna
Dr Giustino Varassi, Pain Specialist, Italy
Dr Willem Scholten, International Doctors for Healthier Drug Policies (IDHDP)
Dr Willem Scholten, International Doctors for Healthier Drug Policies (IDHDP)
Neil Betteridge, Vice Chair of the Chronic Pain Policy Coalition in the UK
Louise Skelly, Head of Operations, Patient and Client Council, Northern Ireland
Dr Pamela Bell, Chair of the Pain Alliance of Northern Ireland
Dr Chris Wells, President, European Pain Federation.

Making pain patients’ voices heard across Europe and changing the prescribing culture

This edition has been funded by Grünenthal.

Pain specialists at the forefront of the campaign for better care explain why education and awareness raising is still such an important issue and Lars Møller, representing a Danish patient group, recalls his struggle to be get treatment for pain in the face of ignorant healthcare professionals. Finally, people in pain are urged to get involved in the fight for better pain management services by putting pressure on politicians.

Contributors:

Lars Møller, Vice President, Danish Association of Chronic Pain Patients
Professor Hans Kress, Head of Department of Special Anaesthesia and Pain Therapy, Medical University of Vienna
Dr Giustino Varassi, Pain Specialist, Italy
Dr Willem Scholten, International Doctors for Healthier Drug Policies (IDHDP)
Neil Betteridge, Vice Chair of the Chronic Pain Policy Coalition in the UK
Louise Skelly, Head of Operations, Patient and Client Council, Northern Ireland
Dr Pamela Bell, Chair of the Pain Alliance of Northern Ireland
Dr Chris Wells, President, European Pain Federation.

From nerve-blocks to spinal cord stimulators: how interventional approaches can help

For a full transcript of this programme please click here.

This edition has been funded by Pfizer.

Physiotherapy, exercise, medications and clinical psychology all play an important role in pain management, but what happens if these treatments don’t give people the relief they need to get their lives back on track?

For some patients, more invasive treatments can make a big difference, but there are often difficult decisions to be faced, as Paul Evans discovers from sitting in on one of specialist in interventional pain management Dr Ron Cooper’s clinics in Causeway Hospital, Coleraine.

We hear from patients who have often waited years before being referred to the clinic where they will be considered for interventional treatments such as spinal cord stimulation, nerve-blocking injections and radio frequency treatment. Dr Cooper explains why interventional treatments are more appropriate for some patients than for others, how they are thought to work and why it’s important to see them as part of a broader pain management strategy.

Issues covered in this programme include: Nerve blocking, spinal cord stimulators, medical intervention, invasive treatment, radio frequency treatment, neuropathic pain, risk, side effects, operation, surgery, hernia, burning pain, back pain, complex regional pain syndrome, pelvic pain, nerve pain, physiotherapy, medication, multidisciplinary approach and scoliosis.

Contributors:

Dr Ron Cooper, Consultant in Anaesthesia & Pain Relief, Causeway Hospital, Coleraine.

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