Pain Management Panel - engagement: phase 2 report

4. Feedback on NHS Inform chronic pain self-help guide

This chapter presents the panel's feedback on the NHS Inform chronic pain self-help guide.

Chapter overview:

• The self-help guide was described as well set out, and easy to read and navigate. Panel members also felt the language was clear, and some praised the tone of the guide, describing it as positive, empathetic and non-judgemental.
• The graphs used throughout the guide were desrcibed as 'filler' and some panel members suggested they should be removed or replaced with more informative graphics.
• There was general consensus among the panel that at 18 sections, the guide is too long and should be condensed or adapted from its current format.
• There were calls for the information and advice contained in the guide to be available in different formats, including video, paper copies and an app for mobile phones.
• Overall, the content of the guide was seen as fairly informative and helpful. The panel generally agreed that the information and advice in the guide would have been useful at the onset of their pain, especially in a collated form such as this.
• The disclaimer included at the beginning of the guide (which states that the guide is intended for people with 'mild-to-moderate mental health issues') attracted some criticism from the panel. It was described as a 'presumptuous' and 'discriminatory' statement which erroneously conflates chronic pain with mental health issues.
• As with the webpage, the panel did not think that the guide content fully reflects the reality of living with chronic pain. They called for more 'lived experience' examples to be included in the guide.
• While the panel appreciated that the guide did not focus on painkillers or medicine as the only way to manage pain, they did highlight the lack of information available about alternative therapies for managing chronic pain, such as herbal remedies and acupuncture, and suggested this should be incorporated.

Design

The guide was described as well set out, and easy to read and navigate.

One panel member welcomed the inclusion of the ReachDeck toolbar (as shown in Figure 2)^[3], but called for more attention to be drawn to it. They advised that the guide should include a sentence highlighting the tool and explaining its purpose. The need for this was reinforced by others in the group who said they had not noticed it and did not know what it was for/how to use it.

While the panel recognised the benefits of including graphics to break up the text, they were generally unimpressed with the graphs used throughout the guide (such as the example presented in Figure 3). The graphs were described as 'filler' and lacking any meaningful context, insight or data.

Language

The panel agreed that the language used throughout the guide was simple and easy to understand. They did not point out any examples of phrases or language that they found to be too technical or jargonistic.

Some praised the tone of the guide, describing it as positive, empathetic and non- judgemental.

"The way it was written was empathetic. Saying things like, 'It's not unusual that you are in pain', those kind of words. It's useful to hear that… The way it's put across, it definitely was worded in an empathetic way." [Male, 55, Glasgow, C1, low impact]

"I felt the whole thing was very positive and actually gives you a bit of hope." [Female, 75, Highland, C1, low impact]

Format

Length of the guide

There was general consensus among the panel that at 18 sections, the guide is too long and should be condensed or adapted from its current format. Concerns were raised that people who are experiencing pain will not have the will or concentration to complete the guide in its entirety.

"18 sections… if you're in pain, the last thing you want to do is have to sit through it all. Even with stopping and starting, you may start it and not use it again. You just may just give up on it." [Male, 52, Western Isles, D, high impact]

"They might just look at that and think, I don't want to read all that, you know? It might be too long winded. At the end of the day, you want a quick answer, a quick solution to your problem… it's much better to be precise, have something you can click on to get a bit of help quickly, rather than have to scroll through it all. I would keep it as short as possible." [Female, 75, Highland, C1, low impact]

A few said that had it not been for the 'homework' task they'd been set, they would have quit quite early on, noting that there was a lot of content to persevere through. Some did not appreciate sections of the guide which direct users to other NHS Inform resources^[4]. They argued that this makes a lengthy guide even longer, and suggested that instead of 'outsourcing' these parts, summaries should be put into the guide, with links provided to the other resources for those who would like more detail.

Suggestions for other formats

There were calls for the information and advice contained in the guide to be available in different formats; the panel explained that their condition means that they sometimes struggle with attention span and reading long chunks of text, and so video or audio can be a more manageable and effective way for them to consume information.

"Definitely a video. I think that's less invasive. If you're in pain and you're listening and watching, I would say you can deal with that better than sitting there reading... The video definitely is the first and foremost thing that should be on it." [Female, 75, Highland, C1, low impact]

Others called for the guide to be made available in a paper copy. A few recognised the option to print the guide as a PDF, but noted that a lot of people do not have access to a printer, and so advised that there should be an option included for people to request a paper copy is posted to them.

A few suggested that the guide would work best as an app, which would mean they could save their progress as they worked through the sections. However, others appreciated the simplicity of interacting with the guide in its current form; grateful that they didn't have to download a new app, register for an account and create a password.

One respondent proposed a change to the structure of the guide, suggesting that it moves away from it's current linear format (whereby participants work through sections in order from 1 to 18), and a navigational tool is used instead, so that users can direct themselves to the sections of the guide that they find most relevant.

Content

Overall, the content of the guide was seen as fairly informative and helpful. In similar feedback to the chronic pain website, the panel said they had seen or heard a lot of the content before, but agreed that the information and advice in the guide would have been useful at the onset of their pain, especially in a collated form such as this.

"On the whole, I thought it was really good. I think their information on chronic pain was really, really good and useful. The tips about breaking things into manageable chunks - that's exactly what I try and do on a daily basis." [Female, 47, Falkirk, C1, high impact]

Some sections were flagged as particularly helpful, including the explanation of chronic pain, the action plans and the section on emotional reasoning.

"I find a lot of value in the part about patterns of unhelpful thinking. It's not something I'd ever explored before. So things like the emotional reasoning, that is pretty new to me. When talking about treatment in the past, it's not something that's ever come up." [Male, 26, Glasgow, C1, low impact]

A few said they appreciated that the guide did not focus on painkillers or medicine as the only way to manage pain, welcoming the information about other techniques like physiotherapy exercises and goal-setting.

However, there were some criticisms of the content. As with the webpage, the panel did not think that the guide content fully reflects the reality of living with chronic pain. They called for more 'lived experience' examples to be included in the guide, such as quotes, case studies, and real life stories of successful pain management techniques.

"Give a real-life example. I've seen other NHS websites where there are real human beings telling their stories. And they're very powerful." [Male, 52, Western Isles, D, high impact]

"Maybe they could have a wee section saying 'this person lives with pain and this is what they do' to help make the situations or scenarios come alive a bit more." [Female, 77, Highland, C1, no impact]

The disclaimer included at the beginning of the guide (Figure 4) attracted some criticism from the panel.

Figure 4: Urgent help disclaimer

Urgent help

This self-help guide is intended for people with mild-to-moderate mental health issues.

If you're feeling distressed, in a state of despair, suicidal or in need of emotional support you can phone NHS 24 on 111.

For an emergency phone 999.

The panel agreed that the statement felt out of place; some questioned whether it belonged in the guide at all or whether it was mistakenly copied from another guide. The disclaimer was described as 'presumptuous' and 'discriminatory', as it conflates chronic pain with mental health issues, which undermines the physical effects of their condition. A few raised concerns that people with chronic pain may access the self-help guide, read this disclaimer and decide not to continue using the guide if they interpret that the resource is only for people with 'mild-to-moderate mental health issues'.

The panel also highlighted the lack of information in the guide about alternative therapies for managing chronic pain, such as herbal remedies and acupuncture. They suggested that it would be helpful to include information about such therapies, or at least provide links to external resources about them.