Pain Management Panel consultations: report

Qualitative findings

Seven overarching themes emerged throughout discussions with the Pain Panel:

• Experiences of support and the range of organisations and services they have engaged with
• Impact of chronic pain on life
• What good, effective support looks like
• Barriers to treatment
• Enablers to treatment
• Views on the person-centred care approach
• Reflections on research into chronic pain

This chapter presents a summary of the key discussion points under each theme.

Experiences of support

Panel members described different aspects of support for living with chronic pain. In these conversations, they reflected on experiences with health services, practical, financial and emotional support, and the overlap between different needs. The importance of maintaining control, independent living and self-agency was raised by panel members, and many described challenging experiences during the pandemic. Some shared specific positive or negative treatment and support experiences they felt policy makers could learn from.

Details of the specific sources of support accessed by panel members are provided in Figure 2. Some of the examples listed were only cited by participant, however they have been included to demonstrate the breadth of services accessed by the panel.

Figure 2: Support accessed by panel members

Type of support

Medical services provided by NHS

Examples of services/treatments accessed

GP

Practice Nurse

Pain management clinic

Diabetes clinic

Multiple Sclerosis (MS) clinic

Podiatrist

Physiotherapy

Type of support

Private/self-funded health care

Examples of services/treatments accessed

Bowen treatments

Kinetic Chain Release (KCR) treatments

Chiropractor

Massage

TENS machine

Type of support

Self-management

Examples of services/treatments accessed

Meditation

Exercise, including swimming, walking and yoga

Type of support

Alternative/ complementary pain management therapies

Examples of services/treatments accessed

Acupuncture

Hypnotherapy and Neuro-linguistic programming (NLP)

Essential oils

Herbal remedies

CBD products

Type of support

Third sector

Examples of services/treatments accessed

Puffin Hydrotherapy Pool in Dingwall

Maggie’s Centre

Macmillan; befriending and household help services

Beatson Cancer Centre

MS Society

Type of support

Digital services

Examples of services/treatments accessed

Scottish Government-funded Flippin’ Pain webinars

Zoom consultation with NHS doctors

Online peer support groups for chronic pain sufferers (one online support group was set up by a local health board, and another was run through a Facebook group

Type of support

Phone services

Examples of services/treatments accessed

Telephone consultations with doctors

Key themes in the discussion of support and examples are presented below:

Experiences with health services

Engagement with GPs, physiotherapists, hospitals and pain clinics were frequently mentioned in the discussion of experiences of support. GPs were described as a key source of contact; in some cases, GPs were the only health care provider a panel member had engaged with. For others, GPs were a key route to referrals to a range of other services, including physiotherapy and pain clinics.

Panel members described different frequencies of support from health services – some are in regular contact with health providers, and others access services intermittently. Sources of health support also vary; some use a combination of services provided through the NHS and privately funded therapies.

Well, as far as I'm concerned, I just deal with my GP. I haven't been referred on to anybody else. That's as much support as I have had. [Female, 75, Stirling, C1, low impact^[2]]

I'm trying various things like TENS machines. I've paid for loads of treatments like Bowen, KCR, massage everything under the sun. [Female, 47, Falkirk, C1, high impact]

Practical/disability-associated support

Practical support was often mentioned by panel members, including the blue badge scheme, mobility aids and adaptations. During these conversations several panel members highlighted the challenge of travelling to appointments, linked to pain, exhaustion and lack of mobility. They stressed how valuable different forms of practical support had been to them.

Financial support

A small number mentioned the value of welfare benefits as a valued source of financial support; one noted that their initial application for PIP had been rejected and was only approved with support from their MP. This person had also received financial support from MacMillan to fund a cleaner, because their mobility issues affected the extent of what they could do at home.

Emotional support

Some panel members talked about experiences of accessing mental health treatment from health services, including talking therapies and medication to deal with anxiety and depression. In these conversations, others said while they had no experience of such support, they would have valued it.

The importance of social and peer support for mental health was also highlighted by panel members; some described the importance of care from their partner of family members; others mentioned involvement with forums specifically for people with chronic pain.

Obviously the more you're down in the dumps about things the sorer you feel … I'm quite lucky that my family is all round about me and I find that that helps keep me going because if I'm gonna be sitting down in the dumps and in one of them comes in with the kids or whatever, you automatically perk up a wee bit before you realise the pain is not away but it's not as severe. [Female, 64, Renfrewshire, D, high impact]

Experiences with peers differed – while some had positive engagements with peer groups, a panel member recently diagnosed with chronic pain found the encounter upsetting. They explained that their aspirations and expectations about managing pain differed from those who attended the peer session; some peers in the group were self-managing pain through cannabis and this panel member did not want to engage in illicit substance use.

Maintaining control, independent living and agency

Some panel members mentioned an ongoing desire to maintain independence. Strands of discussion on this theme varied; some focused on their physical ability to do things and organise their lives; a few talked about wanting a sense of agency and control over their medication and health services, noting their own research into effective treatments and therapies.

I'm quite independent and I keep trying to be because if I don't then I've given up, you know, that's when bad things start happening to you. [Female, 73, Inverness, C2, no impact]

I want to be able to continue to work for a long time. I'm in complete denial about what's wrong with me. [Female, 47, Falkirk, C1, high impact]

Chronic pain during the pandemic

Panel members often reflected on the pandemic’s impact on access to treatment. For example, some who had previously received treatments in hospital or clinics now accessed support from the GP; a few praised the introduction of remote access to healthcare services which they felt was a better use of time and resources.

One older person said that a healthcare practitioner had not physically seen them since the pandemic began; a few highlighted that capacity at their GP surgery had become so stretched that they could not get appointments; as a result, one person had changed GPs. Others highlighted that access to some therapies such as yoga and physio (both NHS and self-funded) had stopped during the pandemic, noting the ongoing backlog in waiting lists.

If there was something wrong with you, either email you or they will, you know, where you can send pictures they have WhatsApp. That's the kind of facilities that they should have. [Female, 52, Glasgow, C2, high impact]

I desperately needed contact with somebody but I couldn't even go to the surgery. It was so difficult to get an appointment. [Male, 55, Dumfries & Galloway, D, high impact]

Specific positive or negative treatment experiences

Panel members were asked about specific positive or negative experiences they felt could be learned from. Discussion of positive experiences typically revolved around the attitude and approach of healthcare practitioners; people who listened, were available when you needed them, and were keen to bring about change and find solutions that reflected their individual circumstances. Examples include:

• The significant contribution of a new consultant who reviewed her medical history and investigated the cause of her pain. He identified the issue and arranged surgery to resolve her condition; until then, she had spent more than two decades using pain medication to live with the pain.
• Experiences of pain management offered by a university included peer support, yoga sessions, alternative therapies and direct access to a clinician for students living with chronic pain
• A doctor who offered flexible ways to engage with their surgery asked their patients to complete a questionnaire to establish if patients preferred contact in person, or by email, telephone or video conferencing.
• Health care practitioners who take an interest in people and don’t make them feel rushed or that they are wasting time.

Specific negative experiences centred on inaccessible services or services inappropriate for a person’s condition or treatment history. Examples include:

• One person described their referral to a pain clinic as a ‘waste of time’, feeling that the service offered only common-sense solutions that were patronising for a person who had lived with a pain condition for a long time.
• Lengthy waiting lists or cancellation of appointments.
• Some described practitioners who they perceived to be patronising or disinterested.

Impact of chronic pain on life

The negative impacts of chronic pain was described by some panel members, including: loss of active lifestyle; disruption to life and plans; loss of income and impediments to employment and volunteering activity; difficulties sleeping; strong reactions to medications such as feeling dazed, sluggish and sleepy; lack of ability to concentrate; and mental health struggles.

Some reported a loss of independence, needing help with daily tasks like getting dressed and opening jars; in this discussion, a few mentioned feelings of shame and embarrassment.

Frustration and a lack of autonomy and feeling they had to go through hoops was also mentioned by some panel members. Examples include being told they needed to meet specific eligibility criteria or try different medications before they could move on to the support they most wanted.

The person was like, you can't get referred to the pain clinic unless you've tried various different medications for your back. I've only ever been on amitriptyline and have had my dose increased and I said I'm not prepared, they wanted me to go onto gabapentin. And just what I dread I didn't want to go on it. Because of what my work is I've got to drive and be with it. [Female, 47, Falkirk, C1, high impact]

What does good, effective support look like?

Swift access to medical appointments was raised as a priority by several members of the panel. A few suggested that being able to contact their GP by email could cut down on the delays they face when calling their local surgery.

Access to chronic pain specialists with in-depth training and knowledge about chronic pain conditions and treatments than their GP might have was another vital element of good, effective support raised by the panel.

It feels like there's enough people with chronic pain to warrant a specialist section of the NHS just for chronic pain. So that if you're diagnosed with chronic pain long term, you would have, not just your GP, but the chronic pain specialist, who you go to because they'll have a better understanding of your condition and which route to go down; whether it's medication, or mental or physical help. That's what I would like to see. [Male, 55, Dumfries & Galloway, D, high impact]

Some said that in an ideal world, support for chronic pain would be delivered in a joined-up, holistic approach, so that service users had one point of contact for financial, physical and emotional support. Access to free counselling, a range of different physiotherapies (e.g. Bowen therapy) and equipment (e.g. TENS machines) through the NHS was noted as a priority for some.

Others mentioned that home visits from medical professionals and prescription deliveries would be welcome. However, there was recognition that limited NHS resources could be a barrier.

A few stressed the importance of access to socialising opportunities for people experiencing chronic pain, noting that they often face barriers to an active social life such as mobility problems and poor mental health, which increases their risk of social isolation. The panel suggested that people living with chronic pain should be referred to local peer support groups, and transport provided in cases where individuals cannot organise this themselves.

Send them a letter and say, ‘we've got this little group going’. If they could send that to people with chronic pain…it would get them out of the house for a little while. Even if they couldn't make their own way there, get an ambulance or share a pickup for a few of them. Take them there and let them get out a bit. Instead of sitting in the house. We could do a wee bit more to make people aware of what's happening and that there are things for them. So they don't have to be on their own. [Female, 73, Inverness, C2, no impact]

Person-centred care

Panel members were shown a short video produced by the Nursing and Midwifery Council which describes what is meant by the term person-centred care. The panel had mixed reactions to the explanation of person-centred care. Some felt that this approach was reflected in their experiences of accessing support for chronic pain, noting that some of the doctors and nurses they had interacted with spent time getting to know them and more about their lives and personal circumstances.

Yes, these things have happened to me and it's good. It shows that they care. It's showing an interest. They’re not just there to see what you've gone in for that day, they are looking back and asking you how you feel then and is it still the same or is it any better, and it just helps you. [Female, 73, Inverness, C2, no impact]

I recognise that, not from my normal GP, but the younger ones that come in, they give you the time. They ask and stuff as if it's a bit more person-centred on the bigger picture. [Male, 55, Glasgow, C1, low impact]

A few members of the panel had experiences of being involved in decisions about their health and care plans. For example, one was given a list of different medications for MS with information on each and asked for their input in selecting one.

However, others did not feel that their support experiences aligned with person-centred care, and argued that the aspirational approach seems unrealistic given the time and caseload demands of health care professionals.

Yeah, that's a pipe dream compared to the experience I've had the last couple times I've been in hospital. [Male, 49, Glasgow, E, high impact]

They're looking at you as a number; they want you in and out the door as quickly as possible. They don't have the time to sit and do this just now, because they don't have the staff, they can't recruit the staff. It's what we should be getting, but it's not what we will get. [Male, 52, Western Isles, E, high impact]

It's like the opposite. If you showed GPs or hospitals that they would laugh you out the room. They haven't got the resources to do the basics, nevermind whatever that is. [Female, 42, Edinburgh, B, low impact]

There were mixed experiences of how treatment plans had been explained to the panel in the past. Some shared instances where they felt well-informed, and others described experiences of being left with little to no information.

A few suggested that it would be helpful if they received a short letter or email summarising what had been discussed after each of their medical appointments, which would make them feel more well-informed. The panel also noted consistency (seeing the same health care professional at each appointment) and kindness were important aspects of person-centred care.

Enablers

The primary enabler to accessing services discussed by the panel was the confidence and ability to advocate for yourself when seeking support for chronic pain. Some described repeatedly requesting referrals, further testing and new treatments from medical professionals.

That's how I found out about the pain clinic – I had to kind of fight a battle to get that referral done. [Female, 47, Falkirk, C1, high impact]

I think if you don't fight for it they just kind of leave you to it. If you don't say ‘I want this, this and this’ they'll just go, ‘alright we can get away with giving them this’ and then just kind of brush it off. [Male, 29, West Dunbartonshire, D, low impact]

I had to go back to the doctors about three times to see if I could get physio. [Female, 64, Inverness, B, no impact]

One panel member commented that free prescriptions are an enabler in that they remove affordability barriers for people with chronic pain when accessing medication.

Across discussions, it appeared that panel members who were being supported by progressive health care practitioners felt they were receiving better quality care than their peers; that this care was more flexible and appropriate to their needs.

Barriers

The panel shared experiences of various barriers to accessing support for chronic pain in the past. These included limited NHS resources, concerns over reliance on painkillers masking the root cause of pain, physical and emotional barriers, lack of empathy and understanding from healthcare staff, lack of awareness of services and barriers linked to identity/protected characteristics.

Limited NHS capacity/resources

Several panel members noted barriers related to NHS capacity and resources. They described struggling to get an appointment with their doctor and facing lengthy waiting times to access health services.

GPs seem to be so stressed right now, you can hardly even get an appointment to see them. So it's very frustrating, really, when you are in an awful lot of pain. There's nobody there to help you. [Female, 75, Stirling, C1, low impact]

I've got stage four endometriosis, and the waiting list for anything related to endometriosis or anything like that is horrific, absolutely horrific. So I had to wait for the first appointment that was four and a half months it was, for that one to then be cancelled. [Female, 25, West Dunbartonshire, E, high impact]

I was on a massive waiting list to be seen at the chronic pain clinic and that took six months to get a phone consultation. [Female, 47, Falkirk, C1, high impact]

A few commented on the limited services and medications available on the NHS compared with private healthcare, and one noted difficulty securing medication due to supply shortages.

We are hitting another big problem now. I'm struggling a lot of times to get the medication... I've got to phone round chemists to see who's got what I'm looking for in stock because there's such a shortage of medication out there now. [Female, 64, Renfrewshire, D, high impact]

Concerns over medical reliance on painkillers and lack of focus on root cause of pain

Some panel members described experiences of presenting at health services with chronic pain, and being dismissed with painkillers with little effort to explore or identify the root cause of the pain. In some cases, this linked to how long a person had been living with a chronic pain condition – a feeling that health care services were not looking for a solution, and that they were expected to manage, through a reliance on painkillers.

It shouldn't be a case of, ‘oh well just keep taking the tablets.’ I feel that the hospital people could investigate… look a bit further and see if there's anything else that can be done for them, because if you've got chronic pain, you would like to get investigated. [Female, 77, Inverness, C1, no impact]

Mine was really severe migraines and then the sciatica I got I could hardly walk. And they just gave me painkillers and said, ‘Oh, go away.’ [Female, 64, Inverness, B, no impact]

The over-reliance on pain medication triggered concern with the panel, many of whom were reluctant to take strong painkillers for longs spells of time, fearing addiction, loss of cognition or other side effects interfering with the demands of their lives, e.g. work and tasks like driving. Some members of the panel lost confidence in health services as a result.

If you're taking all these heavy painkillers as well then it has an effect on your day-to-day life because then you are sluggish you don't feel as if you want to get up and do anything because you are medicated. [Female, 25, West Dunbartonshire, E, high impact]

I was 150 milligram Amitriptyline which is absolutely huge, so I was a total zombie and I thought I just can't live like this…I'd lost confidence in the GPs, so I didn't go back and ask these kind of questions.” [Male, 55, Glasgow, C1, low impact]

“I've only ever been on Amitriptyline and have had my dose increased and they wanted me to go onto Gabapentin. And I just dreaded it. I didn't want to go on it. Because part of my work is I've got to drive and be with it.” [Female, 47, Falkirk, C1, high impact]

Physical barriers

Mobility issues associated with chronic pain made it difficult for some to access in person services.

Another barrier would be - depending on where your surgery is - trying to get there. If you don't have a car or transport, it's quite awkward, especially if they have to walk with a stick or if their mobility is not good. [Female, 77, Inverness, C1, no impact]

Those in rural areas noted distance to services along with poor public transport infrastructure as barriers to accessing support.

I did try and join a support group…but I'm 17 miles here for a pint of milk, in the middle of nowhere, you know, in the hills. If we want to go to the meetings, I've got to go to 100 miles to Edinburgh… I certainly can't afford to travel 100 miles to go to a support group. [Male, 55, Dumfries & Galloway, D, high impact]

Emotional barriers

A few said that spells of poor mental health affected their motivation to access support.

You've maybe just got to a stage where you just resign yourself to, this is me, you know? I'll try as hard as I can not to let it get any worse but I genuinely don't believe I can get any better. [Female, 64, Renfrewshire, D, high impact]

Lack of empathy and understanding from medical practitioners

A few panel members felt as though their pain hadn’t always been taken seriously by medical practitioners and said they had often been dismissed or made to feel as though they were exaggerating their pain.

I think, at the very beginning that you are sometimes made to feel like a hypochondriac. [Female, 64, Renfrewshire, D, high impact]

Lack of awareness of services

Some pointed to a lack of awareness of services as the reason they had not accessed any support. A few said they were unaware of any support outwith their GP, and a small number said they had never heard of the pain clinic.

Barriers related to identity/protected characteristics

While the topic was raised in all discussions, very few panel members had direct experience of any barriers in accessing support which related directly to their personal identity or protected characteristics.

One panel member shared how he felt that as a man, he had been raised to ‘grin and bear’ his pain. One of the younger members of the panel said that he felt his chronic pain was not taken as seriously as that of an older person, noting his doctors assumed that he had strained his back through exercise as opposed to something more long term and in need of deeper investigation.

Further research into chronic pain

One participant called for more investment into research about chronic pain conditions.

There needs to be more research into certain types of illnesses and chronic pain… they don't know the answers, they don't know the best ways to deal with them. There needs to be more research into why people are experiencing these pains and what can be done to remedy it and help people live their day to day lives. [Female, 25, West Dunbartonshire, E, high impact]