Meeting of the Parliament 16 November 2022
It can be very difficult to access services for chronic pain, and in my experience, women find it particularly hard to be taken seriously by some healthcare professionals. That situation has been acknowledged in the minister’s very welcome women’s health plan, and it is important that we keep that in mind throughout the debate.
I have had to access emergency care for multiple conditions, because of pain getting bad, only to be told, “Well, that just happens.” As I grew up, the brush-offs went from “They’re growing pains” to “That’s what every woman has to go through” to “Well, it’s probably mainly your mental illness.” I know from chats with disabled people’s groups that that final comment is particularly insidious. Chronic pain is very hard to live with, and people with chronic pain who do not have a mental illness already will often develop one, due to the pain. To have to struggle even more to get one’s pain acknowledged and treated because of mental health issues adds insult to injury.
The focus in the Scottish Government’s framework—and in the minister’s contribution—on specific training for chronic pain and its impact is very good. When we have to deal with a healthcare professional who does not understand a condition, it can be hard not to feel as though what they are saying is personal and that they do not care. Of course, though, they do. Many simply do not know how to manage someone’s chronic pain or to tell the difference between a drug seeker and someone who actually needs good strong drugs to function.
It is vital that healthcare providers get clear guidance on and pathways for dealing with someone who has chronic pain and knows what treatment, help and support they need. Improving advice for those with chronic pain to allow better patient-led choices to be made is also great, if it works. However, as many disabled people know, it can be a double-edged sword when a person seeks to inform themselves about their needs and options. Most of the people whom I know with pain-related disabilities needed advocacy and peer support to get a diagnosis and treatment, and it is very rare to hear of someone going to their GP, being referred to a specialist service, getting diagnosed and then successfully having their chronic pain managed without any need for a fight.
At this point, I give special mention to the SNP’s disabled members group, an incredible collection of people—and me—who are disabled SNP members. I had the pleasure of chairing its annual general meeting last month, and I always leave its meetings with a great sense of hope.
Disabled people, whether they have a physical, mental or invisible disability or neurodivergence, often have to form such groups themselves. It can be exhausting to fight every day for adjustments on one’s own. Even if we form disability forums and groups, educate ourselves, find out about our illness and arm ourselves with all that information, we are often met not with understanding and a new willingness to give us the treatment that we have asked for, but with suspicion.
As the minister has said, people with chronic pain are already experts in their condition, but making that clear to doctors can actually harm them. At that point, doctors often pull back and suggest paracetamol and a walk, or they accuse patients of consulting Dr Google too much. However, that is what people have to do.
I recently met some people involved in various EDS groups—that is Ehlers-Danlos syndrome, for those unfamiliar with the abbreviation. EDS very often comes with chronic pain, but there is still a lack of understanding of what causes that pain and what makes it worse. I have hypermobility and get awful migraines, what feels like toothache in my joints and frequent soft tissue injuries and inflammation. At the meeting, we discussed cases of EDS patients being referred to physiotherapy treatments that made their conditions worse. It is clear to me that clear pathways are needed, and I am glad to see reference to that in the framework for chronic pain in general, although I will follow up with the minister the more specific issue of diagnoses such as EDS that often come with chronic pain.
Like Labour members, I am concerned about self-management that is prescribed inappropriately or without the concurrent medical support that people who suffer from severe and chronic pain need. Self-management is often very helpful, and I recognise the many benefits that it brings in freeing up other resources, but we have to make sure that people who need medical intervention do not feel that they are being fobbed off.
I was lucky to get a diagnosis of hypermobility as a kid after a few rugby injuries, but it was not until very recently, after reaching out to people online, that I understood fully what the diagnosis was and what it meant for me in the long term. In a very bad pain period at the end of last year, I went to my GP begging for help. I got physiotherapy and was put on a course of paracetamol and ibuprofen to be taken multiple times throughout the day; it upset my liver badly, and my physio was suspended until the symptoms went away. I was left in a lot of pain and completely stuck. I could not come down here, could not do my job properly and could not live my life.
It was only after a hospital admission that I got pain killers that actually worked and helped me get back on my feet as well as physiotherapy and support in developing an exercise routine. All of those things allowed me to walk round the Parliament building this week. That is not unusual, and the worst stories that I have heard have come from constituents who were on pain management that worked but which was then removed by their doctor.
Affa Sair wrote to MSPs yesterday on that very point, asking the Scottish Government to ensure that clinicians in Scotland stop forced withdrawal of opiates from chronic pain sufferers. I appreciate that it is a very nuanced issue—there are issues to consider with regard to controlled drugs, addiction and overprescribing—but such drugs have their place. If someone needs them to be able to live their life and control their chronic debilitating pain, that is exactly what they are for, and I hope that the Scottish Government can provide some reassurance to patients who are in that situation.
16:35