Pain Management Panel - engagement: phase 2 report

2. Experiences of seeking information about chronic pain

This chapter sets out the panel's experiences of seeking information about chronic pain. It covers what they look for, when and why they look for it; which information sources are used and trusted; the devices and formats used; barriers to seeking information; and other relevant points about the need for and value of information.

Chapter overview:

• The most common driver for seeking information described by the panel was in response to a flare up of pain.
• Some panel members said they had recently searched for advice and answers to specific questions, including:
  • What is causing my pain and what are the best ways to manage it?
  • How is my condition going to affect my work?
  • How many painkillers is it safe for me to take, and are there any side effects?
• For some, there is no specific trigger or prompt to look for information; they said that researching about their condition, new treatments and pain management has become part of their daily life. A few follow online discussions about their condition, others regularly browse forums for new information.
• A mix of information sources are used; some panel members showed a strong preference for receiving information directly through face to face consultation with medical professionals (GP, consultant, nurse, physio), but others reported finding more depth/greater breadth of information available using online sources.
• The majority of the panel had searched for information about chronic pain online. They use a range of sources including forums, social media (Twitter, YouTube & TikTok) and Google searches. However, a small number were wary of online sources due to concerns over scams and the veracity of information. One group felt those with chronic pain can be particularly vulnerable to scams, as some may be in a desperate position and therefore willing to try anything to ease the pain e.g. 'miracle cures'.

Reasons for seeking information

Panel members described when and what prompts them to seek information about chronic pain. Searching at the time of a pain flare up or some other health concern was most frequently referenced. They described looking for ways to manage the pain, or a wish to investigate the cause of an issue; for example, a side effect of a new medication, or linked to something else.

A recurring theme in the discussion was that living with a chronic pain condition involves constantly looking for answers and information. Panel members said this learning journey began at the point of their diagnosis, or during their efforts to get a diagnosis, when they

undertook their own research to explore their symptoms or find out information about their condition and any medication they have been prescribed.

"Now if I get any medication that's different, or they try something, I always Google it to see what the side effects are and what it should do for me." [Female, 64, Highland, B, no impact]^[2]

Many described an ongoing search for information to stay abreast of any new treatments and learn about self-management or how their condition may impact them or change.

"Rather than medication it's like, what behaviours do I have to take? What self-care do I have to do?" [Female, 48, Edinburgh, B, low impact]

"I follow on social media, specifically Twitter, one of the leading professors in the field, who is very, very good at sharing the latest updates and the latest information, and putting things out there for general discussion within the community. And you know that if he is saying something, it's worth looking at and going through, because part of it might not affect me, but in the next five to 10 years, some of it may start to manifest itself on me and then I know, I'm forewarned about this." [Male, 52, Western Isles, E, high impact]

"Constantly googling. You know, if anybody's saying, 'oh, this might help', then it's googling about that. My diagnosis is fairly new, it's only been a year. So I've done loads of research and tried to find out what this is and how I can maybe get some sort of a relief for the pain. Whenever somebody mentions something that's been helpful, that's me off on a tangent to research whatever it is." [Female, 47, Falkirk, C1, high impact]

"I'm still trying to come to terms with what's actually going on with my own body which is frustrating. I'm a 26 year old girl and I'm told that I might never have kids, so like I'm researching into the possibilities of will that happen? What's the best space to make that happen? I'm ready to have kids but my body just won't allow it. So it's looking at like different therapies … It's just researching and you end up down the rabbit hole… at three o'clock in the morning sitting googling all different things that you can do." [Female, 26, West Dunbartonshire, E, high impact]

Which information sources are used and trusted

Panel members described using a range of information sources:

• Online; including search engines, social media, NHS websites, international sources, online academic journals, chat forums, YouTube, blogs and podcasts.
• Medical practitioners; seeking information from their GP, nurse, physio, consultant or other relevant clinician.

For those using online sources, a typical search for information might involve firstly looking something up online, and if clarification is needed or the search has been fruitless, seeking support from a GP or consultant to find out more.

"You can't get an appointment with a doctor so what's the point. You're as well doing it yourself and looking into it yourself." [Female, 26, West Dunbartonshire, E, high impact]

"I go to research papers so I'm constantly looking for new research… looking for up to date information." [Male, 55, Dumfries & Galloway, D, high impact]

Conversely, one described a clinician who encouraged them to look up some of the information that had been shared at the appointment, to learn more about their condition.

"When I was diagnosed by the neurology department, they basically said, 'right, we can tell you a brief bit, but this guy has been researching this for the last 25 years; go and read his website and it will give you an understanding better than what we can tell you face to face, because by the time you've left here, you will have forgotten 90% of what we told you. Go and learn and have a look.'" [Male, 52, Western Isles, E, high impact]

A small number highlighted that online information was a useful way for others in their lives, including family members and clinicians, to learn about their condition.

"[Discussing their dentist]. I said, 'have a look at this website'. The next time I saw him, he went, 'I get it now. I understand where you're coming from. It must be a bit of a sod to live with'. And I went, 'that's a good understanding'… we've got a great relationship. Rather than him saying, 'I don't understand it [fibromyalgia], I'm not going to find out about it'." [Male, 52, Western Isles, E, high impact]

Some said they had stopped looking for information online or preferred not to do online searches, because what they learned had frightened, depressed, distracted or confused them, or because they did not trust the sources. These panel members preferred to speak to a clinician if they had questions.

"I don't want to read too much. I think it goes way back to when I was first diagnosed nearly forty years ago, and they treated me at the beginning for lupus and basically I was told at the time, don't go and look up at libraries... because they're only telling you the worst case scenarios. If I get a new tablet... I'll listen to what the doctor and the chemists [say] are the main side effects. I don't go reading what else could be there because I think it just gets you totally depressed thinking what could be wrong with you." [Female, 64, Renfrewshire, D, high impact]

"I think it's best to speak to a human and ask questions and see what they think. Sometimes if you looked it up online, and you wouldn't know what to do for the next step. Then you're sitting worrying what should you do." [Female, 77, Inverness, C1, no impact]

Quality, trust and clear communication were themes in conversations about information sources. Most held the information from clinical practitioners in high regard; while many wanted greater access to their clinicians, a small number highlighted how easy to reach and supportive they found their doctors or nurses.

"I bought stuff online and it's a load of rubbish. So I'd rather just go to my doctor, look him in the face, have the human contact, and for them to advise me and diagnose me with what they think is the best, best thing for me." [Female, 75, Highland, C1, low impact]

"I know that there's loads of stuff around CBD and helping with pain. I've asked two different GPs that I've seen fairly recently and they've both said to avoid it and I suppose that it's from medical point of view. So I am quite reluctant when it comes to it, although folk are saying it's great." [Female, 47, Falkirk, C1, high impact]

"My doctor's brilliant, give them a phone at the drop of a hat and I'll get three or four different consultants in different areas for the conditions I have. So I don't feel I need to use online." [Male, 49, Glasgow, E, high impact]

"Technology has improved so much. And, you know, you don't have to see your consultant face to face. You can do it, like we're doing just now [referring to the online focus group]. You can, you know, physio appointments, over COVID were done like this, one to one with a physio. And I'm like, this is brilliant. This is so much better." [Male, 52, Western Isles, E, high impact]

"The nurses have more time to sit with you and tell you to try different things. I think you're maybe more relaxed with a nurse. They're also very knowledgeable and try to talk you through what you can do to help yourself." [Female, 77, Inverness, C1, no impact]

However, some questioned their clinician's levels of knowledge, or expressed cynicism about the medical model.

"I haven't tried the CBD… but you know, it's like, everybody's kind of swearing by it, or a lot of folk anyway. And yet, you see your GP and they're like, 'no!' Yet right away, you'll get offered co-codamol at high strengths, you know, that is completely addictive. When I've had sciatica, trapped nerve in my neck and stuff, that was the automatic thing - here's a high strength of co-codamol and just take it every day. If I'd done as was advised, I would be completely addicted to co-codamol." [Female, 47, Falkirk, C1, high impact]

"I got put on a new antibiotic, I'm just thinking, I'm gonna ask the practice, do they do they get paid for drug trials of that antibiotic and is that why I went on it?" [Male, 55, Glasgow, C1, low impact]

"I went to my friend and got some simple information, it was just a simple herbal medicine. But you know, I wish the doctors had told me about it." [Female, 52, Glasgow, C2, high impact]

Many mentioned the value of learning from peers.

"When I was at uni, the university were quite helpful and kind of brought people together and that created a kind of space. We all keep in contact that way." [Male, 26, Glasgow, C1, low impact]

However, in these discussions panel members noted that individuals could have different responses to treatments and medications; what works for one person might not work for another.

Preferred devices and formats

Most panel members use their phone to access online information when scanning documents or doing general searches, and some use a tablet or laptop to look at more detailed resources. In these conversations they highlighted the value of online access to a huge array of information.

"You can do it from your house; it's simple." [Male, 29, West Dunbartonshire, D, low impact]

When discussing how online information is presented, different preferences emerged. For example, one panel member strongly dislikes information presented in a video format; another feels swamped by too much text, and prefers short summaries of information; one liked webpages that allow you to expand sections to get more detail, if needed.

A small number described the value of receiving information in a paper format. They explained the struggle to process and retain new information explained by a clinician at an appointment; having information on paper, to refer to later, was helpful. One said a trusted book could be shared with peers.

"I get the one to one with my doctor or consultants. When I see the consultants, they'll tell me what they're going to do whether to change meds, or I need to try another exercise but then I get a copy of that sent to me just to confirm exactly what was said at that meeting. It works really well. If it's one of these ones you've forgot as there's so much [information], then they send a letter on just to confirm." [Male, 49, Glasgow, E, high impact]

"Get an appointment and see somebody, and they are really quite thorough. For me anyway, I find that it's the best communication for me. And they will send me emails, which I'll read, or they'll send me letters on the diagnosis, which is really helpful as well." [Female, 75, Highland, C1, low impact]

"Having a book there is great, because you can pass it on to other folk. And you know it, it's not the same condition but the same techniques that are in that book can help other folks. So you make folks aware of it, pass it around.... if it's a trusted avenue, then I'm all for it." [Male, 52, Western Isles, D, high impact]

Barriers to seeking information

Across conversations with panel members, many described their wish to receive information from or discuss it directly with their clinicians. Many comments on barriers to seeking information centred on the difficulties of getting an appointment, or the challenge of accessing the right specialist; however, some stressed the availability and willingness of clinicians to answer questions.

"I was sent to a professor, done one session with him at a local clinic. He said he'd get back to me with an appointment for between 4 and 6 weeks' time. That was pre-Covid and I'm still waiting on the contact." [Male, 49, Glasgow, E, high impact]

"I was going on a treadmill between various different hospital departments to try and find out what was going on. And you would come up with the, 'oh, you're not us; go and see so-and-so'. So then you get an appointment to go to the next department, then that department will take one look at you after a while and go 'no you're not ours - we're gonna punt you back' and eventually you end up back at square one." [Male, 52, Western Isles, D, high impact]

"GPs are so general; they have to see so many different people for so many different problems. How can they specialise? That's what it comes down to. With chronic pain it's such a complicated area… it's looking more like it now from the statistics that we need a chronic pain management clinic in every, you know, catchment area." [Male, 55, Dumfries and Galloway, D, high impact]

Some comments on barriers to seeking information centred on the challenges of online searches. This included research fatigue due to the volume of information to review, or encountering sources that are not comprehensive.

"Sometimes it can be really fragmented, like a Google search brings up pages after pages after pages and you can just get totally lost. That can kind of be a barrier in some ways…you just get almost bogged down and then yeah, you can't find what you're looking for or you do find it but there's like conflicting information. It's just too much stuff sometimes." [Male, 26, Glasgow, C1, low impact]

"The barrier for me was not knowing where to look for the information." [Male, 52, Western Isles, D, high impact]

A small number of panel members reflected that despite some positive experiences, overall access to information from the NHS can feel reactive, rather than proactive:

"I was lucky with a specialist physio neurological physio she said, just email me if you've got any questions and I'll book you in kind of right away... Sometimes you'd want to have another chat with them to see right I'm at this stage a couple of years on, what can I do myself to help. Is there any advances in knowledge or treatment? But I feel like that's not available as a general thing. I feel like I have to wait until something happens before I can do that." [Male, 55, Glasgow, C1, low impact]

"I would like to speak to a physio, perhaps every couple years or something and just get advice, prevention." [Male, 26, Glasgow, C1, low impact]

"The problem with it is that I feel they should talk to you more, especially complex conditions. Like when I came out of hospital after the cancer left severe nerve damage, couldn't walk and all the rest of it and the GP was leaving it to the consultant, the consultant was leaving it to the GP." [Male, 55, Glasgow, C1, low impact]

Acting on information

Conversations about information that participants have acted on mainly centred on self- management approaches. Some of this information was provided by clinicians. Other panel members had implemented self-management approaches including diets, exercises and use of CBD products, through online investigation, including engagement with peers.

"I've tried new exercises…it helps in the long run. It helps. I think that's what it's all about. Giving you a way to get through your pain, instead of having to dope yourself with medicines." [Female, 73, Highland, C2, no impact]

Other relevant points raised

Other issues linked to the lived experience of chronic pain emerged in conversations about information seeking.

A small number described being victim of scams and online fraud, noting that because of their pain, they were vulnerable to exploitation:

"You're a bit like the wee drowning man who will reach for anything to try and save themselves. And if something comes along that says 'here, this is a miracle cure, this will help you'…then you suddenly realise that you've bought a packet of gummy bears that allegedly contain cannabis. And I paid 25 quid for them. And then two weeks later, they're taking 75 quid off your account, because it's a con… What you think is the magic bullet… you will jump at it no matter what it is. And that's the problem with chronic pain. You think 'oh good they're offering me a solution'. It might not be the solution. It may cause you more problems at the end of the day." [Male, 52, Western Isles, D, high impact]

"Well, I'm terrified to take things off the internet or whatever because there's so many things happening, there's so many scams, and sometimes I'm terrified to even go online." [Female, 73, Highland, C2, no impact]

In conversations about information, some noted that their extensive online searches reflected the amount of stress, fear and anxiety of living with a chronic pain condition. In these discussions, a sense of loneliness was shared:

"You feel quite alone. And nobody's really got answers to it. So it's a lot of self-research through Google." [Female, 47, Falkirk, C1, high impact]

"Nobody cares. That's what I say to my son. Nobody cares about your health. Other than you so you better get yourself sorted out so that's why I've taken it into my own hands." [Female, 48, Edinburgh, B, low impact]

"It's a fear of the unknown when you don't know what it is and you don't know how it's going to progress and it is such a worry." [Female, 75, Stirling, C1, low impact]