The next item of business is a debate on motion S6M-06779, in the name of Humza Yousaf, on improving care and services for people with chronic pain. I invite members who wish to participate in the debate to press their request-to-speak buttons now or as soon as possible.
I call Maree Todd to speak to and move the motion. Minister, you have around 13 minutes.
15:01
I welcome today’s opportunity to discuss our commitment to support the health and wellbeing of people in Scotland who live with chronic pain. We can all experience pain as part of our bodies’ normal response to injury or illness, but, when pain lasts beyond the normal expected healing time or has no identifiable underlying cause, some people experience chronic pain.
Clinically, chronic pain is pain that persists or recurs for longer than three months, and it is estimated that, in the UK, somewhere between 20 and 50 per cent of adults are affected by it at some point. Although some people might be able to access specific treatment, such as a joint replacement, that helps to restore their quality of life, it is estimated that around 5 per cent of the population in Scotland are living with severe chronic pain that adversely affects all aspects of their lives.
When we talk about chronic pain, especially for that group that faces the greatest challenges, we must remember that everyone’s experience of pain is unique and that people need support that addresses their individual needs.
I have met people with chronic pain who have told me how distressing the condition can be but also how, with the right information and support, they have regained control of their lives and improved their quality of life. However, I know that many people do not feel that they have access to the support that they need, which is why we published the “Framework for pain management service delivery—implementation plan” in July. The plan sets out the priorities for the improvement of care and services, which were informed by people who have chronic pain, and the actions that we will take to support people who live with pain to live well.
The framework was developed through extensive engagement with people with chronic pain, our services, clinicians and the third sector. That included public consultation on a draft of the framework. I thank everyone who participated in those activities and shared their priorities, which have informed the implementation plan. The plan has 18 actions that are centred around the four aims of the framework. Those are person-centred care, accessible care, safe and effective care, and improving care and services.
Given the varying impact that chronic pain has on general health and wellbeing, different people require different levels of support that are tailored to their unique circumstances. That is why person-centred care is one of the aims of our framework. We have set out actions that will deliver more consistent advice; improve the understanding of pain and its impact among our healthcare workforce; and promote local, holistic support to address the wider impact of chronic pain on people’s wellbeing.
We have heard from people with chronic pain about how challenging it can be to find clear and consistent information. In response, we have established a national expert working group that is dedicated to overseeing the improvement and co-ordination of information and resources at the national and local levels.
Our starting point for that work will be a user needs assessment through which people with chronic pain can tell us exactly what they need from national resources such as NHS Inform. That will ensure that we deliver more useful and appropriate national advice about chronic pain and better information on the steps that people can take to manage its impact and how they can access further support and services when needed.
People with chronic pain are already experts on their condition, but we know that many benefit from additional supported self-management offered by our partners in the third sector. Our framework is establishing a dedicated third sector network to improve partnership working with our public services, so that people with chronic pain can access a greater range of options for support.
For example, Pain Association Scotland delivers resilience-building sessions to empower people with chronic pain to self-manage their condition as part of their care.
I welcome the input of the voluntary sector, which is so important in relation to self-management. However, people are obviously keen to know what resources are attached to the implementation plan. Try as we might, we cannot find the detail of that.
This year, we have already invested more than £700,000 in direct support of pain management services and the improvements that we set out in the plan. That includes support for the Scottish national residential pain management programme and the clinical leadership required to deliver the plan and improvement activity. That is on top of the £425,000 that we have invested since 2020 in additional support for health boards and third sector and other partners to deliver new projects and enhance support for people with chronic pain through the modernising patient pathways programme, local improvement work and the pain management winter support fund.
Furthermore, our budget for health and social care this year will deliver a record £18 billion for services, including increases for community and primary care health services, where the vast majority of people with chronic pain are seen and managed.
To go back to the third sector organisations, the project by the Pain Association Scotland, alongside other work delivered by the charity, received funding of just under £40,000 from the Scottish Government’s chronic pain winter support fund earlier this year. A person who has chronic pain and who was supported by that initiative reported that the
“course and supporting information has made me feel seen, heard and understood in a way nobody has ever done before.”
They also said:
“You have really helped me to deal with”
the impact of the condition
“and the puzzle of my chronic pain.”
People with chronic pain have also told us about the challenges that they face in accessing local services when they need them, the impact that it has on their wellbeing and the missed opportunities for earlier and more effective intervention. Our framework includes an aim on accessible care, with specific actions to improve how local and national services are delivered to provide a more co-ordinated and consistent experience.
We will do that by sharing best practice, promoting innovative new approaches to service delivery and improving how services understand the needs of their local populations. For example, the report that we published today on the initial findings of our pain management panel highlights that access to support in primary care settings is a priority for people with chronic pain. For many, that is often the only place that they turn to for help to manage their condition. That supports the approach that we have taken to date to improve how specialist pain services work in partnership and share expertise with primary care colleagues.
Since 2020, we have provided more than £180,000 through the modernising patient pathways programme—which I mentioned—to develop new models of care to support people with chronic pain in their communities. An example of that is specialist pain pharmacists and nurse practitioners working together with general practitioners in NHS Ayrshire and Arran to improve their skills in supporting patients with chronic pain. Following that project, patients reported improved emotional wellbeing and greater confidence in managing their pain. There was also a reduction in the number of appointments for chronic pain, and GPs demonstrated safer and improved prescribing for pain management.
A patient who benefited from that project reported:
“Over the past few weeks I have increased my dog walking walks, have resumed outdoor bowling and feel confident meeting up with family and friends. All achieved by controlling my own pain management confidently.”
As well as improving community-based care, we know that we need to improve access to specialist pain services, which were impacted by the Covid-19 pandemic. I am incredibly grateful for the efforts of our dedicated pain workforce to recover and remobilise those services. The latest data shows that almost 80 per cent of people with chronic pain were seen for their first appointment within our 18-week referral-to-treatment target.
How many follow-up appointments were provided within the target period? How long did people have to wait for follow-up appointments? The minister suggests that the target is being met, but that is certainly not the experience of the constituents who have come to me, who say that they are having to wait for weeks and weeks, and in some cases months and years, for intervention.
I know that there is a challenge with identifying follow-up appointments in the data that is collected. One of the commitments in the framework is to improve the quality of the data that is collected so that it is robust and reliable and so that we can get a better picture of the issue that Pam Duncan-Glancy raised. We are aware of that gap, and we are absolutely determined to get the appropriate data so that we can tackle that problem.
We know that some people face long waits, and, through our framework, we are taking action to work with pain service managers to improve the pathways into specialist care. That includes improving referrals and access to the Scottish national residential pain management programme, which provides the highest level of care for people with chronic pain. That programme is funded by the Scottish Government to the value of approximately £500,000 each year. We are also testing new digital options to offer greater choice to people with chronic pain on how they engage with their care.
It is essential that safe and effective support is provided for people with chronic pain. Our framework aim on that will deliver improved outcomes from pain management services by promoting sustainable delivery of effective, evidence-based care.
Expert working groups are working towards that by reviewing national guidance and promoting safer, more appropriate use of medication as part of pain management strategies. They are also identifying opportunities to improve the consistency and delivery of specialist interventions for chronic pain.
The final aim in our framework focuses on improving services to deliver a better experience and better outcomes for people with chronic pain. The report by our lived experience pain management panel that we have published today and the responses to our public consultation on the draft framework have highlighted that improving professional knowledge of chronic pain is a key priority in improving the experience of people with chronic pain.
To do that, we have already established a new national multidisciplinary pain education group, which has developed a comprehensive knowledge and skills framework for healthcare professionals at all levels and in all settings. That, along with other training and improvement resources, will soon be available on a new pain management knowledge hub hosted by NHS Education for Scotland. That will provide a one-stop shop for our public and third sector workforce to drive improvement and consistency in pain management training across our services.
We also acknowledge the need to provide the staffing levels and the workforce that are required to deliver pain management support and services. Our framework has reiterated the commitment that is set out in our “National Workforce Strategy for Health and Social Care in Scotland”, and work is under way to progress future training programmes. Those will support the development of the pain management workforce at specialist and non-specialist levels.
Today, I have spoken about how the Scottish Government will begin to address the impact of chronic pain across Scotland through the clear and realistic actions that are outlined in our implementation plan. We are committed to rapidly improving care and services for people with chronic pain. To do that, we are establishing a dynamic approach, which includes a new governance structure and a shift of focus to building delivery capacity. New working groups are being created—some of those are already operational—to bring together policy, clinical and service expertise at the national level.
Fundamentally, the approach is informed by the diverse voices of lived experience, including those of members of our pain management panel and local views that have been gathered by Healthcare Improvement Scotland.
I reiterate my personal commitment, and that of the Scottish Government, to continue to listen, to learn and to act to make sure that every person with chronic pain is able to access safe, effective and person-centred support to help them to manage their condition and to live well with pain.
I move,
That the Parliament recognises the impact of chronic pain on people’s health and wellbeing in Scotland; welcomes the publication of the Framework for pain management service delivery - implementation plan; notes the actions to improve care and services being taken in partnership with people with chronic pain, NHS staff and services, the third sector and other key stakeholders; supports the focus on delivering person-centred care and improving access to local support for pain; recognises the efforts to increase NHS staff skills and knowledge of chronic pain and its impact, and agrees with the commitment to improve the consistency and quality of pain management services across Scotland.
I advise members that we have no time in hand, so I must ask all members to stick to their speaking allocations or even to undercut those allocations, if that is possible. Any interventions will need to be accommodated within members’ allocated time.
15:14
I want to describe a situation that many of us have experienced, and I would like members to imagine it—dental pain. The pain often comes on suddenly and is often sharp and intense and then accompanied by an aching or throbbing sensation. The throbbing can develop into extreme debilitating pain, leaving us feeling sick. It takes over our waking thoughts, our mental capacity and our ability to function. We feel helpless and exasperated—just make the pain go away! In most cases, once we are treated by a dentist, that is precisely what happens. Now think about being in constant pain forever—not dental pain but significant debilitating chronic pain. Think about getting through each waking hour and the deterioration in mental health. Think about the one in five people across Scotland who live with chronic pain impacting their lives every single day.
Let us also think about the Scottish National Party Government’s decision to cut £400 million from the national health service’s front-line budget. In a typical day in general practice surgery, I spend around 80 minutes talking with patients about their chronic pain, and I spend even more time on their related mental health problems.
Chronic or persistent pain is defined as pain that carries on for longer than 12 weeks despite medication or treatment. Chronic pain can persist after an injury or operation but also affects people with diabetes, arthritis, fibromyalgia, irritable bowel syndrome and back pain, to name a few conditions.
We now add long Covid to the list of conditions that can inflict long-term chronic pain. That is why, more than a year ago, when 90,000 Scots were suffering with long Covid, I called on the Cabinet Secretary for Health and Social Care to establish multispeciality long Covid clinics to care for them. Now, more than 200,000 Scots struggle with long Covid, but, other than some spending announcements, we are still waiting to hear about specific actions to support those people.
The member can speak for his area, but I have been following up on the issue with NHS Forth Valley, and I am pleased to report that I have seen evidence of specific actions that it is taking to support patients with long Covid in my constituency. The member might want to chat with me, so that I can pass that information on to him.
I would be happy to, but what I am calling for is a network of long Covid clinics, because that is how we will get treatment and help to patients who suffer from long Covid. That is what people across Scotland are asking for.
Let us also remember that it can be very difficult for chronic pain sufferers to function in the workplace. In turn, that impacts their family finances. With one in five Scots living with chronic pain, the Scottish economy suffers, too, but let us stay focused on the patient for now. The problem right now for chronic pain sufferers is poor access to treatment to reduce the debilitating impact on their daily lives. Almost 4,000 people are waiting for their first appointment at a chronic pain clinic, and only 26 per cent of patients are seen by a chronic pain specialist within six weeks. In the quarter ending 30 June 2022, 20 per cent of patients waited for ten to 12 weeks.
It is vital that everyone in the Parliament and at home understands that those patients, despite having been seen by their GP and being on significant pain killers such as co-codamol, tramadol or even morphine, are still in intractable pain. It is not the toothache that I described at the start of my speech—it is significant chronic pain. As for patients with musculoskeletal conditions, Versus Arthritis reports that more than 42,000 people are waiting for joint replacement surgery, and that list is anticipated to grow over the coming months.
Scotland has a chronic pain crisis, which is a public health crisis. Although, in July, the Scottish Government published its “Framework for pain management service delivery—implementation plan”, it is underwhelming. It has four laudable aims—person-centred care, access to care, safe and effective support to live well with chronic pain, and improving services—but the plan does little to outline how it will be implemented or explain how patients will access services, and there is no detail on staffing, investment or the involvement of patients. The plan provides little confidence that sufferers of chronic pain will experience any improvements soon.
Does the cabinet secretary expect Scotland’s shrinking GP workforce, with its shrinking budget, to deliver? The Scottish Government said that its thinking on improving care and services is being undertaken in partnership with people who have chronic pain. That would, indeed, be the correct way forward, but the trouble is that we have heard a different story. According to Dorothy-Grace Elder, the voluntary secretary of the Scottish Parliament’s cross-party group on chronic pain, there has been no proper partnership with patient representatives on the Government’s national advisory committee for chronic pain. The committee is closed to the public, stacked with health board officials and civil servants and supervised by the Health and Social Care Alliance Scotland—the ALLIANCE—which is funded by the Scottish Government to the tune of around £6 million a year.
The patient representatives were promised equality and “co-production” with the sharing of facts and documents, but that did not happen and access to documents and facts has been refused. They were barred from seeing the framework document on chronic pain service delivery before it was printed and, six months later, they were sent a printed report that was marked?“draft” without being given an opportunity to comment on it. Ms Elder’s account is disturbing. We have a multimillion pound taxpayer-funded organisation versus sufferers of chronic pain, so whose interests are being represented?
Although appointed for two years, patient representatives were dropped after four months and just two meetings. A freedom of information request revealed that Scottish Government officials and the ALLIANCE discussed, by email, that patient representatives should be told to stop communicating with one another unless they are in meetings that are supervised by the ALLIANCE.
There is an old expression that says, “If it looks like a duck and it quacks like a duck, then it is a duck”. Well, it certainly looks as though the ALLIANCE—supposedly a patient-voice organisation—is taking advice from the Scottish Government on how to control the narrative. A Sunday Post article quoted the ALLIANCE saying that it is not
“subject to instruction from government officials”,
while the Scottish Government said that it did not
“request restrictions on ... members,”
but emails that were sent on 24 and 25 May 2021 suggest otherwise.
Members of the CPG on chronic pain usually pack the gallery during debates that are of interest to the group. The CPG is upset about the timing of today’s debate, because its members feel that the lack of notice cruelly excludes patients with disabilities, who need time to plan and often require to be accompanied.
We call on the Scottish Government to recognise that far too many patients have attempted suicide over extensive delays in physical waiting times. Gross understaffing in pain-related mental health has not been addressed for years. Pain causes job loss, family break-ups, poverty and deep depression.? Pain suicide risk should be fully included in the Scottish Government’s suicide prevention plans.
Patients are worried that the Scottish Government wants to reduce reliance on chronic pain services and certain treatments and increase self-management of pain. The Scottish Conservatives believe that NHS Scotland should develop access to new specialist services, which might include regional one-stop injections and infusions clinics, to help to reduce waiting times and improve follow-up appointments for patients.
Our patients who are suffering with chronic pain are desperate, and we have a duty to come up with solutions—not woolly words. I spoke about one-stop injections, but let me give the minister another solution: where there is spare capacity, with surgeons not in theatre due to lack of beds and delayed discharge, why not use that capacity for trained surgeons to administer pain-relieving injections for people who might otherwise wait for up to 12 months? It is day-case surgery and does not require beds.
I draw members’ attention to my entry in the register of members’ interest, as I am a registered GP.
I move amendment S6M-06779.2, to leave out from “notes the actions” to end and insert:
“notes the concerns from some chronic pain patients regarding the Scottish Government’s lack of meaningful engagement with their representatives, which is causing upset and distrust; supports the focus on delivering person-centred care and improving access to local support for pain; recognises the efforts to increase NHS staff skills and knowledge of chronic pain and its impact, and agrees with the commitment to improve the consistency and quality of pain management services across Scotland; regrets, however, the continued reports of many vulnerable people with chronic pain being forced into unsuitable self-management pathways, with increased pressures on primary care, due to a lack of access to specialist services; recommends that the Scottish Government works in partnership with patient groups to ensure a truly collaborative approach to improving the treatment and wellbeing of chronic pain patients, and calls on Scottish Government ministers to protect specialist chronic pain services, and provide greater transparency around waiting times for return patients.”
15:23
I welcome the opportunity to debate this issue. The cross-party group on chronic pain has been calling for the Scottish Government to hold a debate on chronic pain for some time now, so I will take this opportunity to acknowledge its hard work over the years, with former MSP Dorothy-Grace Elder continuing to champion its cause.
There are difficult issues to discuss, and there is a lack of trust from some patients about the Scottish Government’s intentions and actions. Some people with lived experience have been excluded from those discussions before by the Scottish Government, and we must ensure that that does not happen again. The Scottish Government set up the national advisory committee for chronic pain back in 2017, but seven out of the 10 elected patient representatives quit the committee because they felt that their voices were not being heard and that they were somehow simply part of a tick-box exercise.
The cabinet secretary promised to meet patients, but he has cancelled meetings at least three times. However, he did meet the cross-party group conveners and I am grateful for the work that Monica Lennon, Miles Briggs and Rona Mackay do for those with chronic pain.
I do not want to dwell on those particular incidents, but I would make the observation that successive Governments have made promises about patients’ voices being at the heart of shaping policy—and that is right. That lived experience should not be dismissed, though, if those voices are challenging and do not fit with the Government’s preferred narrative.
Turning to chronic pain services and the “Framework for pain management service delivery—implementation plan”, I think that the broad approach that recognises the context of living with chronic pain is helpful—there is the impact on employment and the impact on family life. However, the pace of change that is suggested in the plan is much too slow. Services are currently patchy and there are not enough staff; we need to move more quickly to support the hard-working staff in this field as well as improving things for patients.
Try as I might, I do not really see the commitment to funding to help to deliver the change that is required, but I am delighted that the minister, in response to an intervention, told members in the chamber about the resources that are attached to the plan. However, I would ask, are those resources new? Are they specifically attached to particular actions in the plan? Will the minister publish the detail of that financial support so that we can have transparency about how change will be delivered as existing staffing and resources are already overstretched?
Let me illustrate the challenge with the latest figures released by Public Health Scotland: 1,835 patients were seen at a consultant-led chronic pain clinic during the last quarter. That is great, but when compared to 2,122 in the previous quarter, it is a decrease of 13.5 per cent. At the same time, just shy of 4,000 patients were waiting for their first appointment at a chronic pain clinic. That figure has increased by 29.9 per cent in just three months in this year, but it is almost 50 per cent higher than the number of patients who were waiting last year. Although first appointments are measured against an 18-week waiting time, there are no such time limits or waiting standards for returning patients and many have waited over a year for that treatment. I believe that the Government acknowledges that further work is required in this area and I hope that the minister can agree to Scottish Labour’s call for greater transparency around waiting times for follow-up treatment.
Let me also address the issue of self-management. If we can give people the tools to help themselves and provide opportunities for self-management, that is a good thing, if it works for patients and is deemed appropriate by their doctors. However, access to specialist services must remain in place not only to help those living with the most serious conditions but to review those who are more able to self-manage. Removing that access is not an option and concerns have been raised that patients have been forced into unsuitable self-management pathways, which has also resulted in increased pressure on primary care services and indeed on many voluntary sector providers.
GPs are already struggling to cope with the increased volume of patients that they are seeing. Stripping away money from the sustainability fund for them and having £65 million stripped away from the primary care improvement fund will simply add to that pressure, so I would appreciate a reassurance from the minister that specialist services will not be reduced as a result of the implementation plan and that the burden will not fall on GPs or indeed on the voluntary sector.
I remember that it used to be the case that patients were sent from Scotland to Bath for some specialist services; I understand that, more recently, patients have had to travel to Doncaster to get pain-relieving treatment. The more that can be provided by the Government in Scotland, the better, and I hope that the minister will address that.
There is undoubtedly similarity here to many other areas of healthcare at the moment. Waiting times are increasing. There are not enough staff, and those we have are under pressure and are underresourced. Patients are getting sicker before they are seen and before they are treated. I have no doubt that the pandemic has exacerbated the situation, but this was a problem before the pandemic began.
Just to be clear on waiting time numbers, the numbers of people who are waiting to be seen are actually lower than before the pandemic and there has been a 77 per cent decrease in the number of patients waiting the longest time, 52 weeks. I am sure that the member will welcome that.
I always welcome good news. However, I will share with the minister figures that I have that show that chronic pain waiting times were just as bad before Covid-19 as they are now. Figures show that 23 per cent of people were waiting for more than 18 weeks for a first appointment at the end of December 2019. In comparison, 17.9 per cent were waiting for more than 25 weeks in June this year. The problem has not really gone away.
Ian Semmons runs the charity Action on Pain and is a patient representative. He said, which sums it up for me, that
“it’s fair to say that chronic pain services in Scotland are in the worst state in the whole of the UK at the moment.”
Let us listen to patients and turn the situation around. If it needs investment, let us deliver that. However, we need transparency of data so that we can establish the scale of the need for improvement, and we need self-management services alongside specialist services, rather than as a substitute for them. Chronic pain is debilitating. Access to services is critical. The Government needs to get a move on.
I move amendment S6M-06779.1, to leave out from “notes the actions” to end and insert:
“notes the concerns from some chronic pain patients regarding the Scottish Government’s lack of meaningful engagement with their representatives, which is causing upset and distrust; supports the focus on delivering person-centred care and improving access to local support for pain; recognises the efforts to increase NHS staff skills and knowledge of chronic pain and its impact, and agrees with the commitment to improve the consistency and quality of pain management services across Scotland; regrets, however, the continued reports of many vulnerable people with chronic pain being forced into unsuitable self-management pathways, with increased pressures on primary care, due to a lack of access to specialist services; recommends that the Scottish Government works in partnership with patient groups to ensure a truly collaborative approach to improving the treatment and wellbeing of chronic pain patients, and calls on Scottish Government ministers to protect specialist chronic pain services, and provide greater transparency around waiting times for return patients.”
15:30
I apologise for my brief absence from the chamber during the debate’s opening speeches. I had to attend to a call from my son’s school.
I am pleased to speak in the debate, and I echo Jackie Baillie’s gratitude to the Government. We have been calling for the debate for quite some time, because it is incredibly important and long overdue.
As we have heard, chronic pain is a hidden condition that affects 800,000 people in Scotland, which is around one in five Scots. It can result in significant suffering both for people who are affected and those around them. Sufferers describe it as a marathon in which they can never reach the finish line. The impact of the debilitating condition has serious ramifications: studies have found that highly persistent chronic pain is associated with poor mental health, poorer general health and even joblessness.
Despite all that, and despite nationally commissioned reports in the past ten years, chronic pain is still not even officially recognised as a condition. For far too long, thousands of Scots who have been suffering from chronic pain every day have been badly let down. We have heard about it in the debate; anyone who reads the report by Healthcare Improvement Scotland will be troubled by what they find. The report looked at provision of adult chronic pain services across primary, secondary and tertiary care in each NHS board area, and found that provision across the country is
“patchy and fragmented”,
and that
“access to services varies considerably between, and even sometimes within”
NHS territorial boards. It continues:
“Very few NHS Boards have dedicated funding streams for these services.”
The quality and effectiveness of the services is rarely monitored. Both healthcare professionals and service users describe a significant discrepancy between the descriptions of available services and the services that are provided. In fact, no health board can provide an accurate description of the chronic pain services that it provides, or of the resources that are available to fund them.
If the Presiding Officer will allow me, I will come to the Government’s pain management implementation plan, which is sadly lacking in detail and leaves many questions unanswered. There is no clarity on how services are to be improved, very little on staffing and a great lack of detail on investment.
The Government says that it has collaborated with people who have chronic pain conditions in developing the plan. However, members of the Parliament’s cross-party group on chronic pain have a different story to tell—we have heard about that already. They say that there has been no proper partnership: 10 patients who were elected to a closed Government committee described being ignored, silenced and repeatedly being denied meetings with the cabinet secretary or health ministers. They say that they did not approve the original report or the implementation plan, and some of them even describe the motions for today’s debate as “vague spin” that could be twisted into anything. That is a damning indictment from the very people who desperately need the Government to take action to improve chronic pain services across the country—it is hardly the seal of approval that the Government has suggested.
I recognise the importance of pain clinics within our local services, which offer a wide range of treatments and provide support to relieve the symptoms of chronic pain that comes from conditions including arthritis, back problems and nerve damage. Those services are under real strain: there is little capacity and a lack of the skilled professionals who are needed to provide those services. I know that the local pain clinic in my colleague Liam MacArthur’s Orkney constituency has recently had to close, which has had a serious knock-on impact for the people who are reliant on its regular service. Although efforts are under way to ensure that health boards on the mainland can provisionally provide that service, the issue highlights the need for more targeted support—both to maintain provision and to identify gaps in the service in advance.
Availability of specialist services is also important. In 2020, the First Minister’s governance report set out her Government’s plans to reduce reliance on chronic pain specialist services and increase self-management. That came as a blow to many severe pain sufferers, who credit specialists with having given life-saving help. For some people, it really has saved their lives. However, two years later, patients still await clarity about which treatments might be cut.
The Government’s nonchalant attitude to health will, sadly, come as no surprise to the almost 200,000 Scots who are currently suffering from long Covid. Let us not forget the real link between chronic pain and long Covid, because pain is one of the symptoms that many sufferers face. The Government is devoting twice as much money to its efforts to break up the United Kingdom in a referendum next year as it is to helping people who are suffering from long Covid. That is shameful. We need to revolutionise our approach to long Covid and chronic pain. The Government’s plans and its whole approach leave much to be desired.
Thousands of Scots are waiting in pain, and they need more than just lip service. They need local, specialised and targeted care, and it is up to this Government to provide it to them. We are being watched in the chamber this afternoon. This debate has been a long time coming, and is long overdue. Let us not meet the challenge with lip service; let us meet it with real action.
We move to the open debate. I remind members that there is no time in hand. Therefore, interventions must be absorbed within members’ speaking time.
I call Rona Mackay to speak for up to six minutes.
15:36
I am pleased to speak in this much-needed debate on chronic pain, and I hope that it will benefit patients who are dealing with that terrible life-diminishing condition.
As a co-convener of the cross-party group on chronic pain for the past six years, I am aware of the daily struggles that are faced by people who are coping with the condition. I have heard many harrowing stories of personal difficulties, frustration and physical pain, often leading to mental pain and suicide attempts.
Today, we will hear that there are long-standing issues surrounding the pathways for chronic pain treatment. I say that they are long standing because they go back a long way—in fact, right back to the inception of this Parliament. One person who knows that all too well is the cross-party group’s secretary, Dorothy-Grace Elder. For 20 years, she has selflessly devoted her time and, often, her money to helping patients in the group. She is more than an administrator; she is a friend and a passionate supporter of many people in the group. The work that she and her ever-supportive husband, George, do is simply beyond compare, so I thank and applaud them both on behalf of the co-conveners and, I am sure, the entire group.
There is no doubt that, over the years, there have been historical problems with inclusivity and communication between the national health service and the Government. That has not been easy to bear for patients who are already struggling with their conditions. There has also been a postcode lottery of health boards in terms of access to chronic pain treatment. However, we must now look forward and work together for the benefit of the many patients throughout Scotland. It is estimated that, in Scotland, 800,000 people—that is one in five people—suffer from chronic pain. I say that that figure is the tip of the iceberg, because data collection has been sadly lacking.
As the minister outlined, in its 2020-21 programme for government the Scottish Government made a commitment to develop a new framework for pain management services. That plan was published in July 2022 and set out the actions that are planned to improve care and services for people with chronic pain across Scotland. It set out new governance arrangements that are intended to improve co-ordination, engagement and the pace of action to improve care and services for people with chronic pain. That includes a network of third sector organisations that support people who are living with chronic pain being represented on the pain management task force, which is an approach to engagement that ensures that a range of lived experience informs how actions are delivered.
Lived experience is crucial to an on-going framework for pain management, and there has been criticism from the CPG about there being exclusion rather than inclusion. However, as we have heard, the Government has consulted the wider pain community throughout Scotland through the pain management panel, which is designed to support people with chronic pain to discuss and feed back on issues, make proposals and ask questions to inform implementation and delivery of the framework. That panel was commissioned via an independent organisation, The Lines Between, and includes people with chronic pain who have not previously had the opportunity to be involved in the Scottish Government’s work. An initial report on the outputs of the panel will be published shortly.
However, it is important to highlight key patient requests from our cross-party group, which is always extremely well attended. Before Covid, people travelled the length and breadth of the country—often in extreme pain—to attend the CPG. First and foremost, a key request is for protection of specialist chronic pain services, which include infusions and injections—in the correct timescale—for those who need them.
One of the issues that patients have flagged up is the delay in getting follow-up treatment. As we have heard from previous speakers, that is absolutely crucial to a pain patient. The nature of chronic pain means that one appointment will not be enough. One patient and member of the group, who requires an annual injection, has been waiting years in the past and has spoken publicly about their experience. That is why data on return-patient waiting times is vital and has, until now, been sadly lacking. There is no limit on the return-patient waiting time, unlike new patients, who have a statutory 18-week waiting time limit. We heard the minister say that 80 per cent of people who are referred as new patients were seen within that time.
Unacceptable waiting times existed long before Covid, but the pandemic has exacerbated the problem, as it has in many other areas of the NHS. Specialist staffing is a huge problem, and I hope that more emphasis is put on that area of medicine during the training of medical students, as they consider their career pathways. I am pleased to hear the minister set out plans for that.
I also hope that we can consider alternative ways of treating chronic pain patients, possibly with vaccination centres that would be similar to the ones that were set up for Covid and flu jags. We have got to the stage at which alternative thinking is necessary in order that we address the historical problems with which patients have been dealing. With a renewed focus on the framework, feasible ideas in all areas should be proposed.
In conclusion, I say that no number of words will ease the pain for the many people who live with the condition. We need action and co-operative working with patients with lived experience to help us to deliver what they need, when they need it. That is the very least that they deserve.
15:42
We have all experienced pain, suffering or discomfort at some point in our lives but, for most of us, it does not—thankfully—last long and, after taking a couple of paracetamols, we usually bounce back to normal. However, we are the lucky ones. For many, such pain can persist for months, regardless of medication or treatment.
As we know, chronic pain affects one in five people across Scotland and has significant and serious impacts on their daily life. One in 20 people have been diagnosed as suffering from severe chronic pain—a condition that, according to the World Health Organization, leaves many contemplating taking their lives. The untold misery that it inflicts on many people’s daily lives is horrendous and alarming, to say the least.
In many cases, chronic pain can persist after an injury or operation. It also affects people with a range of medical ailments, including diabetes, arthritis, irritable bowel syndrome and back conditions.
It is worrying that the number of cases is expected to rise further because of working from home, as more and more people are being signed off sick with back and neck problems. Official figures from the Office for National Statistics have revealed a surge in the number of people who are dropping out of the labour market as a direct result of using inappropriate work equipment. The ONS statistics reveal an epidemic of chronic back and neck problems, which are being linked to working from home. A spokesman said:
“it is possible that increased home working since the pandemic has given rise to these kinds of chronic conditions.”
It is known that almost one in five people are still working from home in Scotland, despite the Covid restrictions having been lifted.
The already alarming figures, which show that almost 4,000 chronic pain patients are waiting for their first appointment at a chronic pain clinic, could be about to increase further. That is a major worry, given that resources in our NHS are overstretched. Indeed, the situation has become so bad that many chronic pain sufferers are now forced to seek treatment in England, because of the long waiting times in Scotland.
Only 26 per cent of patients are seen by a chronic pain specialist within six weeks. ?In the quarter ending June 2022, 26.2 per cent of patients were waiting seven to nine weeks and more than a fifth were waiting between 10 and 12 weeks. We should all agree that, given the circumstances, that is clearly unacceptable, and measures must be introduced to significantly bring down those waiting times.
Some chronic pain sufferers are waiting three years for pain-relieving injections.? Liz Barrie, who is a former nurse, has described the current chronic pain statistics as a “sham”, as the data that has been published covers only people who are waiting for an initial chronic pain clinic appointment. She said:
“What is being hidden is the utterly outrageous amount of time thousands of patients are then forced to wait for follow-up injections.”
The “Framework for pain management service delivery—implementation plan” aims to improve care and the service in partnership with people with chronic pain, NHS staff and services including the third sector and other key stakeholders. On the face of it, that sounds like a positive step forward, if greater resources are provided to ensure that that happens. However, critics of the framework insist that there was no proper partnership with people with chronic pain, who were denied sight of facts and documents relating to the framework.
As my colleague Sandesh Gulhane said, Dorothy-Grace Elder, who is voluntary secretary of the cross-party group on chronic pain, insists that the new framework is absurdly vague waffle, and the fear is that the Scottish Government might slip through measures to reduce specialist services and pile more on GPs, who are already toiling. I hope that the minister will give the assurance that that will not be the case.
Patients are desperate for specialist chronic pain clinics to be maintained and staffed adequately. In September 2020, the First Minister’s programme for government declared that her Government wanted to reduce reliance on specialist chronic pain services and certain treatments and to increase self-management. Two years on, we are still waiting to hear which treatments might be cut. It should be remembered that many depend on, for instance, lignocaine infusions and pain relief injections that are recommended by specialist doctors, which must be protected.
Different NHS boards across Scotland address chronic pain in different ways. In 2017, NHS Dumfries and Galloway set up a chronic pain team in the anaesthetics department at Dumfries and Galloway royal infirmary, in my constituency. All patients with chronic pain are offered an initial education meeting to discuss their condition, after which they are referred for appropriate further treatment.
Will the member take a wee quick intervention?
I am sorry; I do not have time.
What is provided might include treatment from a specialist physiotherapist, a specialist pain consultant or a psychologist, and some patients might see one or all of the specialists over a period. Work is under way to ensure that primary care has good pathways in place to support patients in the community setting, which I hope includes using our community hospital and cottage hospitals in my constituency.
Establishing a framework is one thing, but we really need to be clear on the fine details, such as staffing and investment, if we are to make a serious impact on chronic pain services in the future.
15:47
It is a pleasure to speak in the debate. I acknowledge the fundamental challenges in the provision of chronic pain services; there seems to be agreement across the parties on that. However, there are also opportunities. I have read the new “Framework for pain management service delivery—implementation plan”, which the Scottish Government has produced, and I think that it is considered, strategic, co-ordinated and potentially—the word “potentially” is doing a lot of heavy lifting here—innovative. However, it also has to be implemented, and much of the debate has been about that.
I welcome the first action in the delivery plan, which is to
“Establish a national expert working group to oversee coordination and development of chronic pain information and resources”.
Crucially, those with lived experience of chronic pain will be directly involved in that. I acknowledge that there has been discussion this afternoon about how we capture that direct lived experience in a meaningful way, and other members have put on record their concerns about that.
We need to be open about pressures and resources across the public sector, and we absolutely need to map out and identify local and regional variations in resources and service delivery in relation to chronic pain. We then need to address those variations. I would welcome more details from the minister about how we set about tackling that—for instance, will the learning from that work be connected to action 6 of the delivery plan, which is to establish
“a national expert working group to identify and scale-up improved pain service planning and delivery”?
A connection between implementing a strategy document and identifiable delivery and change on the ground is obviously important. Between 30 and 50 per cent of people are estimated to suffer from some form of chronic pain, and 5 per cent of people in Scotland report severe and disabling chronic pain that adversely affects all aspects of their lives, so such variation needs to be addressed.
I mentioned resources. The most important resources are the patients, who know their pain best, and our healthcare professionals, who do their level best to offer support. I welcome the action to
“Establish a Chronic Pain knowledge hub for healthcare professionals to promote understanding and learning on chronic pain”.
Healthcare professionals who offer support locally do not always have all the answers, but their colleagues elsewhere across Scotland might. We need to share the expertise, and I commend the knowledge hub. However, it must be easy for healthcare professionals to access, and they need to have time to refer to and use it. I ask the minister whether the hub will allow healthcare professionals to interact directly with each other, so that they can offer peer advice and support, rather than it just being an online portal.
I was pleased to see in the delivery plan a clear appreciation of the greater strain on pain management that is caused by the substantial waiting list for various NHS procedures, including orthopaedics, which gets a specific mention.
I know that NHS waiting lists have been a key subject for debate in this Parliament and that the matter has been politically sensitive. In many ways, those in the NHS in Scotland are outperforming colleagues in the NHS in England and Wales, but I acknowledge that we still have a heck of a lot to do—we must do better here in Scotland, too. I welcome the health secretary’s focus and drive in seeking to do so.
However, that does not wash away the reality of individual patients’ experiences of chronic and persistent pain as they face extended waits for surgery. It is important to see in the delivery plan that the Scottish Government is considering how pain management support can be integrated as part of the pre and post-operative care pathways.
The other day, I met a constituent who has waited about a year for an orthopaedic procedure. Unfortunately, that wait is likely to go on for a fair bit yet. Understandably, their on-going pain impacts on their quality of life and on their employment. They need their surgery, but they also need support for chronic pain, which is being exacerbated by their lengthy wait.
Given that reducing surgical waiting times is an on-going challenge—across the UK—it is important to embed support for chronic pain management and support into services that are offered to patients who face long waits. My understanding is that the delivery plan seeks to do that, and I would welcome further details on how it will achieve that.
In the case of my constituent, their GP has tried to be supportive on pain management, and I hope that their referral for physiotherapy has been helpful to a degree. However, it is clear that that person needs their surgery—that is the reality.
The delivery plan talks a lot about specialist services. I draw Parliament’s attention to action 8, which is to
“Establish the NHS pain service managers network to improve coordination and planning of specialist pain services”.
Who could disagree with that? We must do that. Where possible, we must also promote pain self-management. It should not be one or t’other; it should be a commitment to both. What a specialist service looks like might change over time. That must be evidence based, and it must take patients and the chronic pain community with it.
At the start of my speech, I mentioned that the delivery plan is considered, strategic, co-ordinated, integrated and—potentially—innovative. However, it must also be monitored for delivery on the ground. I would welcome more details on how that will be achieved. The plan is hugely ambitious and I am hugely supportive of it.
15:53
I have the privilege of being a co-convener of the cross-party group on chronic pain, alongside Rona Mackay and Miles Briggs. Like them, I am grateful to our force-of-nature volunteer secretary Dorothy-Grace Elder and to all CPG members, past and present, for their invaluable contributions.
Colleagues might know that the group was established in 2001. It has always challenged this Parliament and the Scottish Government to improve the lives of people living with chronic pain. That robust challenge and scrutiny are needed now more than ever.
A debate in Scottish Government time that is focused on the practical steps that will be taken to reduce waiting times, improve patient pathways and tackle the issues affecting the workforce is long overdue and, indeed, welcome. I am slightly disappointed that the Cabinet Secretary for Health and Social Care is not here today. I know that he has been engaging keenly with colleagues, but I hope that he will be made aware of what is discussed today.
As members will understand, at this time the cabinet secretary is spending every waking moment trying to resolve the issues that our NHS is facing in terms of potential strike action. He is very apologetic that he cannot be here, and he will certainly watch the debate with interest. I am sure that Opposition members would be the first to criticise were he not dedicating all his time to resolving that issue.
I thank the minister. I think that we are all keen to make the most of the time in the chamber today.
We know about the long delays and the postcode lotteries that colleagues have mentioned. Those issues predate Covid-19 and Ms Todd’s time in office as well.
We all have to welcome the implementation plan, but—as colleagues including Bob Doris have, reasonably, said—we need to test it out and make sure that it will work. As colleagues have said many times today, the issue is affecting one in five people in Scotland, which is 800,000 people. We recognise that not everyone’s experience will be the same. Everyone’s needs will differ, as will their perception of pain, even among those with the most severe pain.
Unfortunately, what brings our pain community together is the long waits for care and treatment. We know that they are unacceptable. I know from my own casework and freedom of information requests that in my Central Scotland region there are patients who have waited in excess of three and four years for steroid injections, when the recommended treatment time is 18 weeks. We have constituents who are supposed to get their injections six months apart who have waited two years. Some have had to go private when they cannot afford to do so. We know that the issue has exacerbated health inequalities right across Scotland.
As colleagues have said, and it is in the Labour amendment, this is not just a process issue to gather numbers for the sake of it. For patients who require on-going care and follow-up appointments, data collection is really important. It gives people a rough idea of when they might expect to get an appointment, so that they can plan their lives—holidays, annual leave, special occasions and so on. It allows Parliament to scrutinise the workforce plan and make sure that we are putting resource into the right places. Action 6, I think, in the document talks about data. That is fine, but I would say to the minister that it is quite vague. I hope that in her closing remarks we will get a firm commitment that brings us closer to what patients, as well as the workforce, are actually asking for.
Finlay Carson mentioned Liz Barrie, who lives in East Kilbride and is a former nurse and a constituent of mine. She is no stranger to the Parliament, as she has been very outspoken, and she is very courageous. Because Liz worked in healthcare, I think that she feels even more passionately about the issue. I give a content warning here. Colleagues have talked about the impact of pain on mental health, and Liz has said:
“I have contemplated suicide and overdosed on pills in the past because the situation is so bad.”
That is not unique, but it is one example that I will leave with colleagues.
Others have said to me, “You would not expect a family pet to have to wait two years for pain relief”, so why are our constituents having to wait years? Those constituents include Liz, who is a former nurse, and so many others who have had to beg, borrow and steal to get the funds for private treatment during the pandemic, because chronic pain services were completely shut down in many respects and were one of the last services to be remobilised.
Some patients, including some of my constituents in Lanarkshire, travelled to Doncaster because they were in unbearable pain and agony and some of them were feeling suicidal. They went to England and paid for their own treatment, travel and accommodation. The previous health minister said that they could probably get that money back, but they have not received a penny. It is not fair, and I hope that the Government will still try to address that.
Time is short, but I have a couple more things to say. Self-management has been talked about and it is important, but when people are given leaflets and told to go and walk their dog or do a bit more exercise, we have to remember that those recommendations are not appropriate for everyone. We have to avoid being ableist. What about people with disabilities who cannot do those things? What about people who do not have the income to do some of the recommended activities?
I also feel that the issue disproportionately impacts on women, and Ms Todd also has responsibility for the women’s health plan. Endometriosis is a chronic pain condition that it takes women eight and a half years on average to get a diagnosis for. The Government has a brilliant commitment on that, but again we need to know that there is a plan to bring down that time.
Chronic pain can be debilitating, but added into the mix are the impacts of Covid, the cost of living crisis and, for those who live in Lanarkshire, a health board in a code black situation. We need to give people hope, not through our warm words but through action. I agree with colleagues that there is lots of good stuff in the implementation plan, but we need the resource to ensure that it will work, and we need the data.
16:00
I send my regards and best wishes to my former colleague Dorothy-Grace Elder, who has campaigned without pause on the issue of chronic pain since at least 1999.
I will start on a personal note. Like more than 19 per cent of the Scottish population—I now suspect that that is an underestimate, although it is not the Scottish Government’s fault—I have chronic lower back pain. Some days it is worse than others, but it is always there and has been for some years now. Sitting at my computer during Covid made it worse—Finlay Carson referred to that issue—and one day my back simply froze and I had to take bed rest. I mentioned the matter to my GP and was told simply to take painkillers, which I do, and I carry them with me always. Like many, I self-medicate and, in fact, the painkillers have now become more essential than my reading glasses.
That is nothing compared to the level of pain that other people have day in and day out, but it has given me a taste of what it must be like to be in severe and constant pain without relief. You wake up and take for granted that there will be pain. It affects every aspect of moving, including walking and housework. Gardening, which is always a pleasure, takes its toll, and movement is restricted. You adapt to what you can and cannot do. Standing is painful, so even as I speak my back is painful. The pain affects personal relationships. Fortunately, now that I live the single life, only the cat has to hear the constant refrain, “Oh, my back!”
That said, it can also affect the family unit. Partners are sometimes supportive and sometimes impatient. Who wants to hear someone always complaining? We therefore need to have more spaces for those with chronic pain to talk to one another, knowing that those who are listening are in the same boat. It all helps, and it may take pressure off those who are living with people who have chronic pain.
For many people, the situation is far worse than it is for me. The key message—I note that the Scottish Government is approaching the issue in the right way—is that treatment, management and availability must be directed by the people who are suffering from chronic pain in all its varying forms. Any delivery must also be person focused, because each person suffers differently and handles pain differently, physically, mentally and emotionally. Of course, some people simply lose their employment. For them, there are financial consequences.
I note that training for NHS staff is to be increased, which I welcome. Actually, I would extend that to GPs and their staff. Some doctors’ receptionists, acting as gatekeepers, are not always sympathetic. Before I get a lot of emails about that, I point out that I said “some”.
In preparation for the debate, I had a look at online help. I have to say that, when I went on to the NHS 24 self-help guide, I found that it does not do what it says on the tin. After ticking the various boxes on the online questionnaire, it simply told me, “There’s nothing seriously wrong with your back.” Well, that was not any help.
A better website was the NHS self-management site, which has exercises to help with lower back pain. I confess that, until I prepared for this debate, I had not looked at that; I will try some of the exercises. However, if I did not know about it, a lot of the public will not be aware of it. I suggest a public information campaign to alert people such as me who have back pain to those exercises, which might just help—it is worth a try. In the meantime, I suggest to others that they try it.
I also want to focus on early intervention and to encourage those who are silent about their chronic pain to identify themselves. As we know, the adapting that I referred to might well lead to further deterioration in physical and mental wellbeing, because it passes the pain buck to other parts of the body, such as the legs and neck.
Although I welcome the plan, I want actual delivery on the ground. That is the test, at national and local level. I note the minister’s response to Jackie Baillie on resource allocation. It is in the interests of all—those who are suffering, many of whom do so in silence, their families and those who live with them, as well as society at large—that the issue is dealt with.
Plans are the easy bit; the test, of course, is whether we make life that bit easier for those with chronic pain, whatever the level, and I put myself at a very low level compared to others. I know that the minister recognises that point, but it will be the test.
16:04
As many others have said today, chronic pain encompasses a wide range of conditions. For some, there are well-known progression and treatment options, but for others there is little predictability and some way to go before specific treatments are developed. All the conditions have a huge impact on the person experiencing the pain, as well as their loved ones and carers.
Chronic pain affects as much as a third of the population, with one in 10 experiencing high-impact pain. Most chronic pain is caused by musculoskeletal conditions. About eight in every 10 people with chronic pain report that at least some of the pain is in their neck, shoulders, back, limbs or extremities.
The impact of chronic pain is unequal and unfair. A recent Versus Arthritis report shows that certain groups in our society, such as people who live in deprived areas, people in minority ethnic groups, women and older people, experience greater life stress, disadvantage and discrimination and are more likely to have chronic pain. The Versus Arthritis report also says that improved parity with other long-term health conditions needs to be achieved.
Today’s debate is important in pressing for the best possible services for people with chronic pain and in ensuring that we have a medical and social culture that treats pain seriously and does not dismiss or diminish chronic pain as something that everyone gets. I commend Versus Arthritis, the Pain Association and the cross-party group on chronic pain for their work and advocacy on the issue.
I want to share the story of a friend’s journey with chronic pain following an assault. Again, I advocate for shared patient records to ensure that no one has to continue to repeat their story and describe their mechanism of injury. Following the assault, my friend was assessed by maxillofacial surgeons and it was concluded that a nerve in their face was damaged. As a result, they often had issues with pain and a loss of control and numbness in one side of their face. For trigeminal neuralgia, which is what they were diagnosed with, the treatment options were limited. They could choose either to have surgery that would completely sever the nerve, with the risk of more complications, or to take anticonvulsant medication to try to stop the pain.
Anticonvulsants have a number of side effects and require people to be careful with alcohol consumption—people even have to be careful about eating things such as grapefruit. For a young woman, constant pain, numbness and difficulty in controlling one side of their face was bad enough, but for there to be lifestyle impacts and implications added insult to injury. There was no pain clinic referral to talk about other options, nor were there offers to trial other medication. We need to improve that situation not just for people who experience chronic pain as a result of trauma, but, as many others have said, for people with back pain, joint pain or chronic pain that is caused by conditions such as endometriosis.
There should also be good mental health support for people with chronic pain. There are some days when the pain is manageable; there are other days when the frustration and stress are all consuming. For my friend with trigeminal neuralgia, it sometimes feels as though their eye is on fire, which is a constant reminder of the assault.
Experiencing chronic pain, whether it relates to musculoskeletal conditions, nerve pain or idiopathic pain, changes the way that people have to deal with their day-to-day life. For some whose condition might be progressive, the stress and mental toll that that takes cannot be overestimated; that in itself is often a traumatising experience. We need to ensure that people with chronic pain can get the help that they need to navigate their diagnosis. For many chronic pain sufferers, stress has the potential to flare up their condition, so we need to ensure that patients have the right tools and support to be able to manage stress as well as possible in order to prevent exacerbating their condition.
For the rest of my speech, I will focus on how we ensure that people with idiopathic pain are treated with the same compassion and care as those who have obvious mechanisms for dealing with their pain. As I said earlier, and as anyone with chronic pain will know, it is far too easy for people to say, “Get over it,” “Take some paracetamol,” or—that old chestnut—“Everyone gets a bit sore sometimes.” For people with idiopathic pain, there is the added complication of not feeling believed, because there is no obvious cause of their pain. It is no less sore than anyone else’s pain, and it is no less debilitating. It is exhausting to be put through test after test to rule out conditions and to be left with no more answers or with treatment options that are not always entirely suitable. Further research into idiopathic pain presentations is needed, and patient voices need to be heard to ensure that services reflect what sufferers need.
There is an important reflection about chronic pain on the Chest, Heart and Stroke Scotland website. Chronic pain is one of the conditions that people can potentially suffer from in the aftermath of a stroke, and it has various presentations. Chest, Heart and Stroke Scotland recommends that chronic pain sufferers know what their pain feels like and how it manifests, and that they take notes about it if they need to do so. We need to know when our body is telling us that something is wrong, and knowing one’s pain and how it presents could be very important depending on where and when it occurs.
Chronic pain can affect any of us in our lifetime. The effects can be debilitating and can impact on our wider health and our ability to do the basic thing of enjoying our lives. Our healthcare professionals are doing a wonderful job in addressing the root causes of pain. As we have done with other forms of healthcare, we are becoming more person centred, but we need to continue to listen to those people who experience pain and to build on their experiences.
16:10
I welcome the debate, which marks another step forward in the delivery of health and care services that understand and support people with chronic pain. I have listened carefully to the very informative contributions from members, especially Christine Grahame.
Chronic pain is defined as pain that persists beyond normal injury healing time and that recurs for longer than three months. It is a separate condition in its own right and frequently presents alongside other long-term health conditions.
It is often said that living with chronic pain is hard, but dealing with people who do not care or understand can be even harder. Older people represent a significant proportion of people with chronic pain and their lived experience tells us that their pain is sometimes responded to with an uncharacteristic lack of empathy from healthcare professionals, which leads to poor investigation and to little or no therapeutic intervention.
We know that chronic pain is complex and unique to every individual. We hear reports that, as people age and present with chronic pain, their experience of accessing local healthcare services is less than compassionate and lacks empathy. An older person who approaches their GP for advice, guidance and treatment options can find the response—unusually for the caring professions—to be based on assumptions and a sense of inevitability, with old age itself blamed rather than there being a focus on which aspects of the ageing process might be causing chronic pain and on how best to treat and alleviate the patient’s experience of that pain.
Moreover,
“there is evidence to indicate that there are links between adverse experiences and the incidence and impact of pain.”
When an elderly person goes to see their GP for advice and support but they meet with a response that does not acknowledge or engage with their experience, the impact of their pain can potentially be intensified. Indeed, a key finding of the framework that we are debating today is that people with chronic pain feel that
“the lack of recognition of its impact on their everyday life, including from healthcare professionals”
increases the challenges that they face.
The debilitating effect of unmanaged chronic pain reduces the quality of life and the wellbeing of older people, as it does for the rest of the population. The action plan notes
“an approach to care that prioritises empathy and kindness in order for it to be effective”.
I really like the fact that those words are explicitly included in the action plan. Everyone living with chronic pain has a right to expect such an approach when they approach the NHS for care. I hope that, when the plan talks about drawing
“on the expertise of people with lived experience of chronic pain”,
it will include older people, whose voices need to be included in the development of training for health professionals.
An increasing body of scientific research and practical evidence confirms the huge potential of therapeutic touch in reducing the impact of pain. I hope that the toolkit for healthcare professionals can reflect treatment options that are appropriate for older people, including physiotherapy, massage and other bodywork therapies.
It is almost impossible to overestimate the importance of health and care workers—including GPs and their team members—having an understanding of the challenges of living with persistent pain. That is vital in ensuring that they provide informed and compassionate care and it enables them to signpost older patients to appropriate, accessible treatments.
I welcome the fact that the first aim of the implementation plan, which is referred to in the motion, is person-centred care. I also welcome the fact that the actions that are identified to deliver that aim include developing a knowledge hub and a pain-informed care toolkit for healthcare professionals to promote in all care settings. Identifying existing best practice and establishing how the principles of trauma-informed practice can be incorporated as part of pain management care and support services is also a valuable element of the way forward.
I welcome today’s debate and the commitments made in the action plan. To foster an approach that is based on compassion, empathy and respect is the right thing to do. I hope that the work that follows will lead to a significant improvement in the experience of accessing NHS services for all those living with chronic pain, including our valued elderly population.
16:16
I will also start by paying tribute to the work that members of the cross-party group on chronic pain have done over the past 23 years and, in particular, by remembering those who are no longer with us. I know that she will hate the amount of praise that she has received today, but Dorothy-Grace Elder really must be commended for everything that she has done to support patients, sometimes in the most difficult circumstances that anyone could imagine.
I also want to thank and pay tribute to my fellow co-conveners of the cross-party group, Monica Lennon and Rona Mackay, because, over the past six years, we have desperately tried to make some progress for patients. It is not unfair to say that the situation with access to chronic pain services in Scotland has been totally unacceptable for too long. We need to see reform, and we need a new approach, so I genuinely hope that today is the start of a process to deliver change for chronic pain patients across Scotland. The Versus Arthritis briefing for today’s debate states that chronic pain is a public health crisis. I agree.
Jackie Baillie said that politicians are quick to talk about listening to people and to lived experience and about delivering patient-centred care. However, one group of patients for whom that has clearly not been the case is chronic pain patients across the country.
I can honestly say that listening to the stories of patients who have attended the cross-party group has involved some of the most challenging and harrowing conversations that I have had in my six years as an MSP. When someone who is living in such pain feels that contemplating suicide is the only option available to them, that should act as a major wake-up call to us all, but especially to politicians who have direct responsibility for our NHS. Sadly—I am sure that my fellow conveners would back this up—that seems to be the experience of so many of our fellow Scots who live in pain every waking hour of every day.
That is why I desperately hope that the debate is an opportunity for the Government to listen to those concerns and, fundamentally, to start work on fixing services that people rely on.
We have heard a lot of statistics today on the number of people who are waiting for services, but I want to highlight my concern about the movement towards self-management as the service that people will be offered. That is not acceptable and it is not something that we should look to do. As part of some of the service reductions, we have seen the introduction of new pathways that offer patients alternatives to being seen at a consultant-led outpatient clinic. However, if patients take up that offer, they are removed from waiting lists. That creates more hidden waiting lists in our health service.
The suggestion that I have proposed for some time is included in our amendment—namely, to call on NHS Scotland to develop access to specific regional clinics, so that we can drive forward action on waiting times. Patients could access injections and infusions in such clinics, which would help to reduce waiting times and improve follow-up appointments.
A model similar to what we have seen during the pandemic for vaccinations would deliver for our constituents.
Many issues have been touched on, which I hope that the minister has taken on board. During the pandemic, we saw reports that one in 10 Scots were being prescribed powerful opioids purely to deal with the chronic pain that they were living with. I know from conversations that I have had with constituents that they feel that they are now addicted to those opioids—and, indeed, that self-prescribing has become the norm or the only option available to them, with people resorting to purchasing drugs online to manage their pain. That is a hidden part of the crisis that I do not think that we have discussed, but which we must recognise.
The Scottish Government’s framework for pain management services can and must present an opportunity to resolve all those issues and improve access to services. That will take leadership from the minister and the cabinet secretary, and from every local health board. Challenges around staffing remain a significant part of this. We need to see a workforce plan for chronic pain services. Self-management is important, but it can never be an excuse for withdrawing pain services.
The debate has been helpful in relation to two areas. Christine Grahame made a point very well about the work that can be done to provide peer support. A couple of weeks ago, I led a debate on the Cancer Card model, which provides online support and brings all cancer services together. It is about time that we saw such a model for chronic pain patients. It will be useful to see how the hub will develop that. Bob Doris made a number of good points about that. I hope that the approach will be developed organically, by patients, so that they are at the heart of it.
As the minister said, in every single case, it is about the experiences of individuals who are living with chronic pain. The importance of that cannot be underestimated. Access to mental health support has not been looked at enough either. For many people, the pain that presents initially leaves them in a situation where their mental wellbeing becomes poor very quickly, and deteriorates while they wait for access to services.
Today must be the start of a process. I hope that the minister and cabinet secretary will take personal responsibility for how the framework for pain management service delivery will be implemented. It is clear that we need the implementation plan to be explained to patients. How will they access services? What specific detail will be provided on staffing, investment and—ultimately and as always—patient involvement? As Alex Cole-Hamilton said, chronic pain patients across Scotland are watching today, and must see the Scottish Government deliver the change that we need.
16:22
Musculoskeletal conditions and chronic pain are among the most common long-standing illnesses in Scotland. More than 29 per cent of the population, or 1.5 million people, have such a condition—myself included. Before I say anything else, I therefore put on the record my sincere thanks to all the incredible NHS staff for the support that they have given me throughout my life, and which they provide me with now: doctors, rheumatologists, nurses, podiatrists, physios and more, many of whom I see weekly—you all know who you are.
I also thank the third sector organisations and cross-party groups on arthritis and musculoskeletal conditions, and chronic pain, for their work to raise awareness of the conditions and for representing the views of people who are living with them.
Living in chronic pain is constant, pervasive, tiring, distracting and, sometimes, depressing. It often means a strong cocktail of painkillers, some self-care—for those of us who listen to our own advice—and, often, medical interventions. All of those are essential—miss out on one when you need it, and it can all get too much.
Living in pain is like having a whole other job with many moving parts to it. You must plan for it, anticipate it, take time off work for it and, often, work around it. Things can all get overwhelming. I am not exaggerating when I say that there are days when I cannot see through the pain. Keeping going, especially in this job, is sometimes the only option, but that comes at a cost. I make choices every day about how to manage my pain and my time, and it can be tiring. Those decisions take time and energy, but, like the millions of other people in pain in Scotland today, I make them and move on.
When pain is managed, the need for such considerations is reduced, which gives us space to think about the job that we are doing, the things that we want to do and the people we want to spend our time with. Addressing chronic pain is necessary not only to end suffering, but to help to free up the brains and minds of those of us who live with it so that we can contribute to society and lead an ordinary life.
That is why I am not simply disappointed, but angry, that services to help people who are living in chronic pain are on their knees. By letting the current crisis continue for as long as it has, with no signs that it is ending, the Government has let staff and patients down. The crisis has gone on for far too long. Last June, 3,853 patients were waiting for their first appointment at a chronic pain clinic. That represents a 20.9 per cent increase since March this year, and a 46.9 per cent increase since June 2021.
People in chronic pain in Scotland are being left in agony for years and are missing out on essential interventions. As my colleague Monica Lennon said, many people who need regular injections have not had them, and others do not know what will work because they are stuck in a cycle of gatekeeping and barriers, which means that there are nowhere near finding solutions that will work for them. Some people lose their jobs, while some can no longer go out as much as they used to. They lose friends and their relationships change, as my colleague Christine Grahame said, as do habits and hobbies.
As someone who believes that people know their own body, I believe that self-management is important, and Labour members welcome the new framework. However, I say to the Government that that cannot come at the expense of any other intervention. People cannot move on without vital support, but instead of being seen, they are being asked to follow programmes of self-management that are often inappropriate, as Jackie Baillie mentioned. Help for their pain is seen as elective, as though they have a choice, so it is fine for them to wait. They are deprioritised, moved to the end of the list and given a checklist of things that they can do to help themselves, and they are left like that for years.
When waiting times are in years, not months, can the Government really argue that any other interventions are actually available? A right to healthcare that never comes is, in effect, no right at all.
The experience of one of my Glasgow constituents lays all of that bare. Despite explaining that his pain is so debilitating that he has had to give up some work, is becoming increasingly disabled, has had to give up things that he used to enjoy and had to cancel trips out with friends, he has waited for more than two years for essential pain treatment. He has been on and off waiting lists, passed from department to department and told that he was not a priority. He was even told that the length of time that he had had to wait was not as long as he thought it was, because of trickery with numbers that meant that his repeat appointments were not being recorded.
I raised that issue with the cabinet secretary last year and asked that targets and reporting be changed so that they reflected real life experiences, rather than clever counting that hides years of pain. I would appreciate a commitment that the Government will address that when the minister closes the debate.
My constituent eventually got a cancellation and was asked to attend an appointment at short notice. When he got there, he was met by worn-out and stressed staff. He was told by one exhausted nurse that the clinic had been cancelled several times. The system is working for no one—that is the case for patients and staff alike. To add insult to injury, my constituent was then told that he had to schedule his own appointments via a phone number that was never answered. I ask the minister: is he to conclude anything other than that the process itself is designed to gatekeep?
I reiterate that living in chronic pain is a full-time job. The last thing that patients need is having to do an admin job, too. That is really self-management in the extreme. My constituent is angry, he misses the activity that he used to do, he is frustrated because he is waiting for answers and, like many people who are living with degenerative chronic pain, he is constantly readjusting, mentally and physically, to a new normal or worrying about what the next new normal will look like.
Of course, the Government has claimed that the experience of people such as my constituent is a result of Covid, but the situation is not new; it is the result of an understaffed and underresourced NHS that went into the pandemic fighting for its life while being tasked with fighting for ours.
The resilience of my constituent is remarkable, as is often the case with people who live in chronic pain. However, his life—as is the case for many people—is unrecognisable. He has lost work and missed opportunities as a result of spending days on end fighting. He is not alone—everyone in the chamber will have a similar story to tell.
The SNP must step up and take action. It must work with patients to sort out the situation and improve treatment and wellbeing. It must protect specialist chronic pain services, give them the support that they need to do their job, provide greater transparency around waiting times for return patients and end the needless system of passing the burden of admin on to patients. The Government cannot take pain away, but it can certainly take action to stop adding to it.
I call Emma Roddick, who will be the final speaker in the open debate.
16:29
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
I think that we can all agree that it is important that this debate has been held in the chamber today, because it is clear that chronic pain is a public health crisis that is deserving of time and attention in this place and that it demands the focus of the Government.
As we have heard from many speakers, the cross-party group on chronic pain has been calling for this debate for some time now, and we should acknowledge the work of the group’s work—in particular, the work of Dorothy-Grace Elder and, indeed, the co-conveners, who have contributed to today’s debate. It is in that cross-party group that, very often, all of the concerns that we have heard today get raised, articulated and explored. Much more important, it has also acted as a support group for people who have experienced chronic pain, perhaps for the first time in their lives.
If the new framework is truly to deliver meaningful improvement for people living with chronic pain, it must go further and be underpinned by clear investment. If it delivers the improvements that we all seek, we will give the Government credit, but it is clear that there are people who feel that it could fall short of the mark. We must see investment to match the aspiration.
I acknowledge the minister’s response to the issue that Jackie Baillie raised with her, and I hope that she will say more about it in her closing speech. The reality is that thousands of people have waited an unacceptable amount of time for their first appointment at a chronic pain clinic, and we have heard about the challenges with regard to the availability of pain clinics across the country.
We have also heard from colleagues across the chamber about issues in their communities and the things that people have experienced in getting the treatment that they need. Monica Lennon and Finlay Carson highlighted issues that have been experienced by people such as Liz Barrie, from accessing medication and pain management injections right through to—this is, I think, most important—the mental health issues that people experience and the poor mental health that goes hand in hand with chronic pain. Indeed, I thought that the contribution about Liz Barrie was very powerful.
The briefing for today’s debate that Versus Arthritis has shared with each of us highlights how people in this situation feel, including the desperation that they often experience while waiting for updates on their treatment or access to treatment for chronic pain. That sense of not knowing, of not having information and of not being able to get on with one’s life is hugely challenging and deeply concerning.
The Government has said that it is grateful to respondents for taking the time to contribute to the consultation that informed the framework, but it is fair to say that people have also been voicing their concerns that they have not been listened to enough. It is clear that a consultation cannot be just a case of listening to and reflecting on people’s views and then acting without them. As we have heard from Alex Cole-Hamilton, Jackie Baillie, Pam Duncan-Glancy, Miles Briggs and others, people must be at the heart of influencing and scrutinising the framework and driving it forward, because, as we know, lived experience has to be at the heart of everything we do. We have heard some very powerful contributions from colleagues—Pam Duncan-Glancy, Emma Roddick, Christine Grahame and others—who have spoken bravely about their own experiences, and it is important that we reflect on the fact that what they have told us is the story of our constituents, too. They want to be able to share their experience and to see that experience reflected in the framework.
The Scottish Government should be working in partnership with patients, putting them at the heart of service design and using their experiences to inform the best way forward. We also have to do that in relation to new and emerging issues such as long Covid. It is important that Alex Cole-Hamilton brought that issue to the chamber again, given how those who experience long Covid are very often not believed, not given the right information and then dismissed. Indeed, we have heard that today not just about long Covid but about many issues associated with chronic pain.
Does Paul O’Kane agree that, along with that stigma of disbelief, there comes, sometimes, the tangible problem of people having the condition recognised in their medical records? That is particularly the case for the long Covid long-haulers, who got the virus when we were not testing for it and are now facing that very problem.
I absolutely agree with Alex Cole-Hamilton, and in that respect, I would highlight the work that has been done by the cross-party group on long Covid to bring some of those issues to the fore. I hope that the minister will have time to respond to that issue when she sums up.
Alternative pathways for people with chronic pain are to be welcomed; indeed, any solution that offers people relief and respite is to be welcomed. I thought that Rona Mackay’s contribution in that regard was particularly important. We have to look outside the box and think about different avenues, and we have to learn from the Covid pandemic about how we might use some of the innovations that were put in place then to make things better. I think that Miles Briggs highlighted that issue, too.
I am conscious of the time, Presiding Officer, so I will turn briefly to workforce issues. We know that workforce shortages are affecting the delivery of chronic pain treatment, and as we have heard this afternoon, there are issues with accessing specialist doctors and advanced nurse practitioners. We know, too, about issues with allied health professionals; they play an important part in delivering these services, but, as workforce data shows, more than 346 whole-time-equivalent physiotherapy places are vacant. We need to get those vacancies filled and expand the workforce to ensure that people are available to provide the support that is required.
We heard important contributions on the balance between specialist services and self-management; indeed, I thought that Bob Doris’s speech was particularly important in that regard. He said that it should not be one or t’other, and I think that he is right. That point was also highlighted by Pam Duncan-Glancy. People cannot be left just to self-manage and be pushed to the bottom of the list. There have to be specialist services along with good, high-quality inputs in terms of self-management.
People in chronic pain cannot wait. The Scottish Government must listen most carefully to those people who are suffering with chronic pain and deliver services that offer relief and help improve quality of life. That is the yardstick by which we on the Labour benches will judge progress on the Government’s plan.
16:42
It is likely that every single one of us in the chamber today either knows someone who suffers from chronic pain or perhaps even suffers from it personally. Paul O’Kane outlined the important work of the chronic pain CPG as a support group. My colleague Miles Briggs paid tribute to his co-conveners, Monica Lennon and Rona Mackay, for the past six years of work in that CPG but stressed that the situation has been going on for far too long and is unacceptable and that he hopes that today is the start of something new.
Pam Duncan-Glancy outlined her own experience and quite rightly is very angry for both herself and the constituent whose experience she spoke about. We have heard that chronic pain affects one in five Scots—a hugely significant number of people who need access to NHS services. Often unseen, this long-term health condition can be debilitating and it can interfere with every facet of someone’s life—from work to raising a family, to socialising, to carrying out day-to-day activities and trying to get a decent night’s sleep.
As colleagues such as Emma Roddick have emphasised, there are mental health implications, with the psychological effects of prolonged and often unpredictable pain further affecting someone’s quality of life and wellbeing. For some, the situation is so unbearable that they consider suicide as a way out. For many sufferers, it is more a case of managing the pain that they are experiencing than resolving it completely. That often means self-management, and that is not always the most appropriate pathway.
The personal cost of chronic pain is extremely high, but so, too, is the economic cost. Jackie Baillie said that the implementation plan is light on detail. She outlined that GPs are struggling to cope and that patients were having to travel to Bath and are now having to travel Doncaster for treatment. Pam Duncan-Glancy said that people are waiting years for follow-up appointments. Rona Mackay said that, sadly, data is lacking on that issue, and that it is vital to have it. The minister, Maree Todd, said that she is aware of that data gap and needs to get the appropriate data in order to manage the situation.
Across the UK, millions of work days are lost due to chronic pain conditions, especially as a result of musculoskeletal problems. Finlay Carson outlined the impact of people who drop out of the labour market. Some people are waiting for three years for injections. Sickness absences in Scotland’s NHS are also often related to musculoskeletal problems, and we know how important it is to ensure safe staffing levels as the NHS struggles to cope with demand.
Chronic pain is a public health issue that requires a coherent policy response. Dr Gulhane outlined a chronic pain crisis, and Monica Lennon outlined the code black situation in Lanarkshire. The number of people who were waiting for their first appointment at a chronic pain clinic soared by 50 per cent between June 2021 and June 2022, from 2,576 patients to 3,853 patients this summer.
As we have heard, delays of not just months but years have been reported for patients who are waiting to receive steroid injections. GPs are often the first port of call for pain sufferers—understandably so. However, many patients do not realise that they can self-refer to allied health professionals such as physiotherapists, because the SNP Government’s public messaging around primary care reform has been so poor.
Bob Doris said that there is a plan in place but that it needs to be implemented, and he has laid down a challenge to the Government. The problem is that vacancy rates are high among AHPs, especially for physiotherapists and occupational therapists. Those two professions account for more than half the total number of AHP vacancies—yet another example of the SNP’s shambolic NHS workforce planning.
Chronic pain is a public health issue and it is also a women’s health issue, as women are disproportionately affected. The UK Government’s women’s health strategy has stated its ambition that
“invisible or undiagnosed conditions where pain may be the primary symptom”
will no longer be
“a barrier to women’s participation ... in the workplace”.
The SNP’s women’s health plan makes no such commitment.
The UK Government’s women’s health strategy also highlights that MSK conditions are more common in women, and that prevalence is higher in areas that are experiencing higher levels of deprivation. It sets out the work that it is undertaking to address disparities in that area related to sex. The SNP’s women’s health plan fails to address that point. I am especially disappointed that the Minister for Public Health, Women’s Health and Sport is responsible for driving forward the chronic pain implementation plan but makes only tokenistic nods to endometriosis in the document.
Alex Cole-Hamilton mentioned that members of the CPG for chronic pain have been ignored and silenced, and we have heard concerns about the voices of chronic pain sufferers being silenced by civil servants. Shocking incidents have been raised in the press about bullying and intimidation by officials that has been directed towards chronic pain patients. Their voices and experiences must be heard.
Gillian Mackay wants shared patient records, while Christine Grahame wants delivery on the ground. The reality is that the SNP Government keeps publishing flimsy policy papers and plans to improve our NHS services. On chronic pain, it is telling that in the 2008 report “Getting to GRIPS with Chronic Pain in Scotland”, the then Cabinet Secretary for Health and Wellbeing, Nicola Sturgeon, said:
“5 previous reports on chronic pain services have been commissioned since 1994, each drawing attention to services that are inadequate and patchy.”
Dr Sandesh Gulhane has said that the Scottish Government has a duty to come up with solutions such as training surgeons to administer injections.
The SNP Government has an opportunity, once again, to improve the lives of people who are in debilitating pain. Success will be judged by implementation, not intention.
16:49
I thank all the members who have taken part in today’s debate. I hope to pick up on many of the points that have been raised.
The debate has provided us with a chance to highlight the impact of chronic pain and reflect on the challenges that are faced by people who are living with the condition. We have also identified opportunities to improve care, services and support for people who are living with chronic pain.
Specifically, today’s debate has been an opportunity for us to update Parliament on our ambition to tackle head-on some of the long-term challenges that are faced by pain management services, through the actions that are set out in “Framework for pain management service delivery—implementation plan”, and to hear members’ feedback on those commitments and their views on what else needs to happen to improve quality of life for people with chronic pain.
In the context of the wider pressures that have been caused by the pandemic, today’s debate has reminded us of the importance of developing more sustainable and effective pain management services. Rona Mackay and others raised the issue of people waiting for injections. I absolutely appreciate how difficult waiting for treatment is for people with chronic pain, including those who are facing longer waits for injections and infusions because of the pandemic.
The requirement for specialist staff and theatre capacity to safely administer those treatments meant that their availability was impacted during the pandemic, and health boards that offer those treatments are continuing to work through their waiting lists as quickly as they can.
As many people have asked us to do, we are determined to learn from the experience of the pandemic, and our framework sets out the steps that we are taking towards more consistent evidence-based and sustainable delivery of those treatments.
Does the minister believe that pain clinics and pain services should be back up and running as they were before the pandemic? Notwithstanding the waiting lists, should they all be delivering the services that they were delivering before the pandemic? That is not the experience of my constituents.
There are challenges around that at the moment. I will come on to some of the areas that we are reviewing and where change is likely. However, I want to make it absolutely clear that although it might feel like the rest of life and life in the chamber are back to normal, life is far from normal in the NHS, which is feeling the impact of the pandemic and the cost of living crisis every day. We are all aware of the strain that the NHS is currently under, so, no—I do not think that it would be appropriate for us to demand that services be exactly back at pre-pandemic levels right now.
We have heard today that life is far from normal for people who live with severe chronic pain; it is unbearable. Are we getting a firm commitment from the Government on the reasonable request that data be published on patients who require follow-up treatment, so that we can get sustainable services, transparency and some certainty for patients?
First, let me be clear: Scotland is the only UK nation that regularly publishes dedicated performance data for pain management services. As I said when I intervened during Jackie Baillie’s speech, chronic pain services in Scotland are currently unable to gather electronic data on return appointments in a consistent and robust manner that could support, for example, the national data collection that is done by Public Health Scotland. Therefore, we have committed to continue to work with Public Health Scotland to increase national reporting and analysis of data in order to improve chronic pain services. Indeed, that is a firm commitment in the framework.
We are determined to improve care and support for people with chronic pain, and much of that work is already under way through the reforms and improvements that we are delivering for our NHS. For example, we have increased funding to £170 million this year to support primary care services, and to expand multidisciplinary teams by providing additional pharmacists, physiotherapists and occupational therapists who can support people to manage chronic pain and its impact better.
We are also increasing recruitment of mental health workers, including 365 additional posts in general practices, to ensure that people with chronic pain have access to local support for their mental health and wellbeing. We understand the links between chronic pain and other illnesses, including musculoskeletal conditions, and we are tackling waiting lists for joint-replacement surgery through our investment of over £400 million in a network of national treatment centres.
As has been mentioned many times in the chamber today, I regularly meet women who are living with endometriosis, so I understand that chronic pain is often a symptom that they experience. Therefore, we are investing in research into endometriosis; we are taking forward work to implement an integrated referral care pathway to achieve earlier intervention; and we have developed new resources on NHS Inform to enhance access to information and signposting to support for that condition.
Specifically, Conservatives have put forward the idea of one-stop injection and infusion regional clinics. We know that waiting times for people are unacceptable. If they are told that they need an injection within six months, it is not acceptable for them to have to wait another 18 months for a referral. Will the Government genuinely go away and consider that idea and how it can be delivered?
Absolutely—we are committed to delivering improvements in pain management services, including exploring options involving regional collaboration between health boards, where that is appropriate.
However, with regard to specialist interventions such as injections and infusions, we first need to agree a more consistent and sustainable approach to provision of those treatments, based on clinical evidence and patient outcomes. Work is already under way on that approach through the framework, which we expect to deliver more effective care for people with chronic pain. I think that the investments and improvements that we have already begun are making progress and will benefit all patients who access NHS Scotland services, including people with chronic pain.
However, as many members have set out today, more work is needed. That is why we are pleased to have the opportunity to set out our approach and to say how our implementation plan will deliver meaningful improvement in care and services for people with chronic pain.
Although we understand that the majority of people with chronic pain access support in community settings, much of the debate has focused on the experience of people who attend specialist pain management services. Again, we recognise that there are opportunities for improvement. As our experience of the pandemic has demonstrated, we need to promote new approaches to delivery, so that specialist services are more accessible and sustainable for the future. We will continue to work with service managers, our clinical networks and the centre for sustainable delivery to introduce new ways of delivering care to create additional capacity and redesign pathways into specialist pain services.
We have also heard today about the variation in management and treatment options across Scotland. I want to be clear that it is our expectation that every person with chronic pain has access to high-quality evidence-based effective support to help them to manage the impact of their condition, no matter where they live.
Self-management has been mentioned a number of times in the debate. I have to be absolutely clear that self-management is part of all pain management strategies. That was highlighted beautifully by the contribution from Pam Duncan-Glancy, when she related her experiences. It is absolutely not about choosing one strategy over another. Supported self-management is vitally important, whatever strategies are being used to manage pain.
As I mentioned to Miles Briggs, we intend to review the existing SIGN—Scottish intercollegiate guidelines network—guidelines on managing chronic pain in order to ensure that they are up to date. As Miles Briggs mentioned, we will also deliver the recommendations of the short-life working group on prescription medicine dependence and withdrawal, so that people are supported through safer and more effective pain management strategies.
I will also specifically highlight points that were made about access and availability of specialist interventions for chronic pain, including injections. I understand how important those treatments can be for the people who receive them. As part of our wider work to improve care and sustainability of services, we are taking action to develop a more consistent nationally agreed approach to the issue.
Together, all those actions in our framework will provide a better experience of services for people with chronic pain, improved co-ordination of care between community-based and specialist services, and better outcomes from care and treatment.
As minister for public health, I absolutely understand the importance of tackling the inequalities that are faced by people with chronic pain, which have been raised in the debate. We must ensure that our services reduce those inequalities.
In my opening speech, I set out the many strands of activity that are under way to improve access to pain services. Alongside all that, we are investing in improved use of local and national data. That includes the Scottish health survey which, for the first time, is collecting nation-level information on chronic pain and the wider factors that impact on people’s quality of life. That will help to inform delivery of more holistic and co-ordinated services for people with chronic pain.
Waiting times are a useful measure of performance, but as has been discussed in the debate, we can go further.
We will also continue to drive innovation. Building on Scotland’s international leadership in pain science, we have engaged the NHS Research Scotland pain community to explore its priorities, and we will continue to identify opportunities to promote new approaches in our care and services.
In closing, I reiterate that the Scottish Government is, along with all of us here, committed to increasing awareness of chronic pain and its impact, and to ensuring that people can access the right care, in the right place at the right time. Much has been made in the debate of the challenges that we have experienced in the past; those challenges are why we are taking a new approach to ensure that we can deliver at the pace that is required.
We are also taking a new approach to involving people with chronic pain. We are hearing from a broader range of voices that reflect the diversity of experience of life with chronic pain in Scotland.
Lastly, I thank everyone who has taken the time to speak with us to inform our picture of what more needs to be done to meet people’s needs. Their experience has been invaluable in informing our approach to date. It will continue to be invaluable as we take forward our work to ensure that the Government does as much as it possibly can to support those who are living with chronic pain.
Thank you. That concludes the debate on improving care and services for people with chronic pain.
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