Pain Management Panel - engagement: phase 2 report

3. Feedback on NHS Inform chronic pain website

This chapter sets out the panel's feedback on the design, accessibility and content of the NHS Inform chronic pain website.

Chapter overview:

• The panel complimented the design and layout of the website, describing it as clear and easy to navigate. They also agreed that the language is simple and understandable.
• A few panel members raised concerns that those without the access to the internet or sufflicient digital literacy will not be able to use the website. They suggested that the information should be made available in offline formats, for example through leaflets at doctors surgeries.
• The content was described as helpful but basic; few said that they had learned any new information from the website.
• Some thought that the content of the webpage places too much emphasis on activity and exercise, arguing that this doesn't fully reflect the reality of living with chronic pain.
• The list of external resources included at the bottom of the page was welcomed by the panel.

Design

Panel members were generally complimentary about the design and layout of the page. They felt it was well structured and easy to navigate, with clear headings and sub- headings. The panel also agreed that the size, colour and font of the text was easy to read.

"It was broken down into nice bite sized chunks." [Male, 26, Glasgow, C1, low impact]

Language

The language used throughout the webpage was described by the panel as 'simple', 'clear', 'straightforward' and 'easy to read'. They did not highlight any examples of phrases or words that were too jargonistic or overly technical.

Format

While most members of the panel found the website format appropriate for themselves, it was recognised that there may be demand for the information to be provided in alternative formats, such as audio or video.

Some people might not want to sit and read through all of that. So a video might suit some people better than others. [Female, 52, Glasgow, C2, high impact]

A few raised concerns about the accessibility of the website, pointing out that those without access to the internet will not be able to use the resource in its current format. One felt this was particular concerning given the higher prevalence of chronic pain among older people, a population who are more likely to be digitally excluded. This concern was shown to be valid through our engagement with the panel – one member in her 70s opted out of the task as she did not feel comfortable or skilled enough to access the website.

"If you've got internet access, NHS Inform is a great website to start to look at and get pointers. But if you don't have the technology, and you're not comfortable using the technology, folk are going to be missing out." [Male, 52, Highland, D, high impact]

There were calls for the information on the website to be made available in offline formats too, for example through leaflets offered at doctors surgeries.

Content

Feedback about the content on the webpage was mixed, with some praise, and some more critical comments. There was general consensus the webpage provides a lot of relevant information, and is a useful resource for those in the early stages of their chronic pain condition.

"That's an informative page for the beginning of your journey." [Male, 55, Dumfries and Galloway, D, high impact]

The list of external links at the bottom of the page was highlighted as particularly helpful by the panel, who said that they had not been aware of some of the resources and expressed an interest in revisiting the page at a later date to access them.

However, many thought that the information on the page was fairly basic, describing the content as 'common sense', 'bog standard' and 'generic'. Few were able to give examples of any new information that they had learned from the site.

"It's very straightforward. I think we all know all this anyway. I certainly do because I've been through it all." [Female, 75, Stirling, C1, low impact]

Others were quite critical of what they felt was an over-emphasis on using activity and exercise to manage pain, noting that this doesn't reflect the reality of living with a chronic pain condition. Some described experiencing days where their pain and exhaustion is so severe that activity and exercise are not an option, and could actually do them harm.

"I mean, it's a good read but all it's really saying is like, exercise, exercise, exercise… The page doesn't take into consideration that if you're at the point of desperation and you're in actual agony, then you're not going to be able to join the walking club and do all these other things… At my darkest point, when I was in that state, this would not have helped me." [Female, 48, Edinburgh, B, low impact]

"There's a bit about planning your day and trying to do things and exercise. But the thing is, for people that are in chronic pain, that's the last thing they want to do... I think it depends what kind of pain you're going through. For some pain, exercise will help, but for some pain, I don't think exercise is the answer." [Female, 52, Glasgow, C2, high impact]

A few panel members critised the inclusion of the following statement on the site:

"It isn't possible to tell in advance whose pain will become chronic. But we know that people are more likely to develop chronic pain during or after times of stress or unhappiness."

They expressed concern that the statement appears to draw an unhelpful association between stress and pain, and potentially undermines the physical side of their condition by linking its onset to an emotional issue.

"At the beginning, it said that stress and anxiety can cause pain, which I think myself is a load of rubbish… I found that quite insulting. With the illness I've got, some people think, 'well it's because she's a worrier that she's sore.' I didn't like that sentence at all." [Female, 48, Edinburgh, B, low impact]

"I read some points that I didn't really agree with. It says most people develop chronic pain during a time of stress and unhappiness, which I don't think is right. It may be in some scenarios, but not in all scenarios. I think chronic pain can happen because of different things. But I don't think I agree with saying it's precisely to do with stress and unhappiness." [Female, 52, Glasgow, C2, high impact]

The inclusion of the statement "Chronic pain can also affect people living with diabetes, arthritis, fibromyalgia, irritable bowel and back pain" was also debated by a few panel members. They felt that the list of health conditions provided is very limited, highlighting the absence of both Ehlers Danlos Syndrome and Fibromyalgia. It was suggested that an additional sentence should be added, clarifying that the list is not exhaustive and there are many other conditions which are associated with chronic pain.

The panel suggested some other improvements to the content of the webpage, including:

• One panel member noted that there is no section on diet, which they considered to be an important part of managing their pain and general health.
• There were calls for a reference on the statistic stating that chronic pain affects 1 in 5 people in Scotland; some were surprised it was so high, others thought it was a low estimate.