For the past 13 years, Susan Archibald has lived with a constant pain in her heels that she describes as “feeling like someone has just burned you with a red hot poker”.
“When chronic pain first came into my life all those years ago it shut me down physically, emotionally, every way possible,” she explains.
“I couldnae move forward. All I could think about was this pain. It is that bad. I went into myself. Because you can’t cope with anything in your life except this pain. I couldnae think for myself.”
Archibald appeared before the Scottish Parliament’s Petitions Committee earlier this month where she sought to enlighten MSPs as to how debilitating chronic pain can be. It was a moving session that heard her reflect on her struggles with depression as she initially fought to come to terms with the condition that has blighted her life since an unsuccessful surgical operation. However, she jokes that following her appearance she received a call from the Parliament enquiring whether she would like her liberally sprinkled couldnaes, didnaes, faes and taes to be altered in the official transcript of the meeting. Archibald, a proud Scot with the patter to match, roars with laughter as she recalls the conversation and how she politely declined their offer.
“I said, ‘I’m sorry, I’m Scottish and everybody kens. I even type the way I talk, so no, I definitely don’t want it translated’.”
She would, however, like to see her petition translated into meaningful action for fellow chronic pain sufferers and is keen to hear the issue debated in the Parliament to raise awareness. Amongst other things, it calls for more of the management of chronic pain to be transferred into primary care to help improve understanding among GPs and for the establishment of a residential unit in Scotland.
While pain is a feature of many long-term conditions, chronic pain is a condition in its own right. Around 770,800 people in Scotland are estimated to suffer from chronic pain, which is defined as a persistent pain lasting more than 12 weeks. According to the Scottish Intercollegiate Guidelines Network, almost one in five Scots will suffer from severe to moderate pain at some point in their lives.
Over time, Archibald has learned how to manage and control her pain to allow her to get on with her life. But she knows others are not so fortunate.
“I ken that millions of folk are still sitting out there like that. They will never get their lives back. I managed. I’m a really strong person, eh. And ower the years they trialled and errored between medications, learning that the cold affected me and I had to watch what I was daeing. Loads of different things affect my condition. I have learned and I am a strong person and I have managed tae get on with my life. But all the other folk who have never had the chance tae go to specialists services to get sorted or get help will be stuck in pain and they will no’ be able to go back tae work or anything else until they get help.”
There may be good news on this front before too long, however. Last week, Archibald greeted a report in the Scottish Express that Health Secretary Alex Neil has pledged to create the first inpatient service for chronic pain patients in Scotland and is already investigating where this could be sited. However, when asked for comment by Holyrood to confirm this, Neil’s response was less clear:
“We take chronic pain very seriously and are working with boards to improve access to chronic pain services. This work is being overseen by the National Chronic Pain Steering Group and aims to make sure that people living with chronic pain can access high quality, safe and effective treatment as close to home as possible,” he said.
“For a small proportion of people more specialised treatment may be required and National Services Scotland is currently looking at options for assessing appropriate models for Scotland.”
Archibald has pledged to continue her petition regardless. However, this is an issue that has been raised before in the Scottish Parliament. In the first parliament, former MSP Dorothy-Grace Elder - who was by Archibald’s side as she gave evidence - doggedly championed the issue at every available opportunity and secured a debate in the chamber that resulted in 130,000 people emailing the Parliament, a record to this day, pleading for help on chronic pain. And in the second edition of the ‘Getting to GRIPS with Chronic Pain in Scotland’ report, which was published in 2008, then Health Secretary Nicola Sturgeon acknowledged that despite previous publications drawing attention to “inadequate and patchy” services, little had changed. “Part of the frustration stems from a lack of national commitment that recognises chronic pain as a key area of work for NHSScotland,” Sturgeon wrote at the time and expressed her determination to change this and see the report’s recommendations implemented.
However, Scottish Labour’s shadow Health Secretary, Jackie Baillie MSP, who has also championed this issue, expresses her frustration at the pace of change. Baillie first raised the issue of patients being transferred down to Bath for specialist treatment more than two years ago and points out that over £1m has been spent over the last few years sending people with chronic pain south of the border for treatment. Does she feel things have moved on sufficiently since then?
“No, I don’t. The frustrating thing is this was one of the recommendations identified in the GRIPS report back in 2008, that they would review the circumstances for residential pain management. I’m very conscious that the money that is being spent, never mind the distance travelled, is such that it surely is time now that we looked at providing a residential service in Scotland. The last time I considered this the Cabinet Secretary at the time, Nicola Sturgeon, had said that they would set up a review and report towards the end of the year. That of course was last year. So I am waiting with a great deal of expectation as to what the Scottish Government will now do.”
Baillie expresses her hope that Sturgeon’s replacement, Alex Neil, will bring “a fresh pair of eyes to this issue.”
“Nobody would be more delighted than me. I’m very conscious that some would say that in a matter of months he has done more to progress outstanding issues than the previous Cabinet Secretary. But far be it for me to say that.”
Baillie co-convenes the cross-party group on chronic pain, which she describes as one of the more “fiesty” CPGs, and is full of praise for Archibald’s “inspirational campaign”. What it calls for is “common sense”, she states, and adds she is hopeful it will lead to meaningful service change.
Baillie is also supportive of the idea to hold a pain summit in Scotland.
“This is something that originated as an idea in the cross-party group. I was recounting to them the experiences of the cross-party group on learning disabilities where we organised an event for the parliamentary chamber and the power of that for people with learning disabilities, just to be in their own parliament, is something really positive. I was very keen that we looked at doing that in the context of pain, but actually to do a pain summit to look at what has been achieved, what more we need to do and actually, to get the ownership across all partners to try and move forward in a positive but nevertheless speedy fashion.”
Ian Welsh, Chief Executive, the ALLIANCE, says the member-led organisation also welcomes the proposals for a pain summit and describes it as a “vital opportunity” to bring together those living with chronic pain with the third sector organisations and health and care services that support them, and policymakers. He also argues that a summit would be “an important step” that could be taken to raise awareness of chronic pain - “the prevalence and impact of which is often under-recognised.”
Earlier this month the ALLIANCE held a joint seminar with the Association of British Pharmaceutical Industries (ABPI) Scotland to explore progress to date and the various services and treatments that are already available.
“Alongside effective treatment, self-management techniques can be critical in helping people to take greater control over their condition and enjoy better lives,” says Welsh.
“The ALLIANCE continues to champion the role of self-management, supported by greater partnership between the health service and third sector. Many of our members, including the Pain Association, provide invaluable support that enables people to live well with their conditions. Our £2 million a year Self Management Impact Fund is designed to foster the development and spread of these essential community-based approaches.”
After the petition’s early success, Archibald now plans to take her campaign to the rest of the UK. She identifies Labour MP Ann McKechin and Lord George Foulkes as early supporters and so is hopeful that the topic of chronic pain will also be raised and considered in the Houses of Commons and Lords.
“Hopefully, the petition will go on to help everybody in the UK. I ken I’m starting off with Scotland but my aims are a lot higher.”
In raising this petition, Archibald says she was determined to leave MSPs with a real story to reflect on.
“It was an emotional experience for me because for all I’ve talked about some of my life when I go out to work and speak at conferences and events, I’ve never really spoken about how things happened to me and how I struggled with it all.
I’ve never really talked about it all. I shut it away. So I never realised that it would affect me the way it did. I thought it would be alright but it wasnae.”
Since her appearance, she says she has been overwhelmed by the number of people who have written to her or got in touch through Twitter or her blog, each representing another person who has been touched by chronic pain. Archibald hopes these will all now feed into and fuel the campaign and is glad that by putting her own story out there she has helped others to find their voice and, hopefully, to get the help and recognition they so badly need.