CHRONIC PAIN MANAGEMENT IN SCOTLAND – THE ISSUE
Professor Ian Power writes
It is my job in this article to try and portray to what extent chronic pain still exists in Scotland today, and I’m helped in doing this because recently the Scottish Executive commissioned a report exactly on that question. I would like to highlight the main findings of that report and suggest that we ought to decide what we must do in the future to make a difference to this.
The McEwen Report
Professor McEwen was commissioned by the Scottish Executive to carry out this review of Chronic Pain Services in Scotland. This review was published a year ago, and there must be urgency in our response to it. The background is that in 1994 the Scottish Office commissioned a report and published The Management of Patients with Chronic Pain. In the year 2000, the Clinical Standards Advisory Group published an excellent document, Services for Patients with Pain. In 2002, the Scottish Parliament Health Committee produced a Spice Report (an overview of services in Scotland), and then a couple of years ago, at the same time as the Cross-Party Group on Chronic Pain was created in the Scottish parliament, there was a briefing in that parliamentary debate on clinical chronic pain.
The 1994 report of the Scottish Office said that ‘Chronic pain was probably one of the most challenging problems in medicine…a debilitating condition. Health Boards are invited to decide what priority to give to these developments and the level of resources that they would wish to direct towards them.’ This is very polite language, some might say too polite. We can reflect on what the figures are for today, 10 years later, using the report Chronic Pain Services in Scotland, July 2004, by Professor James McEwen.
Enthusiasm and Commitment
This is a good report, which is widely available, and is well worth reading. The remit was to review referral protocols, review the current range of services in each of the health boards, and draw conclusions comparing the state now to the 1994 and 2000 reports, and then recommend how we might improve the level of service across this small country.
A significant disease
These are some of the figures quoted in the McEwen Report: Chronic pain affects between 1 in 5 and 1 in 6, Scottish adults. Two-thirds of these suffer moderate pain and one-third suffers severe pain, so that’s roughly 6% of Scottish adults with severe pain. The figure must therefore be around 250,000. How is it possible to ignore that? This is a significant disease process. In addition, one-third of those patients suffer chronic pain all the time, and the average duration is 7 years. One in 5 pain sufferers have the pain for more than 20 years. How much suffering does this represent in our community? Also what economic impact does this represent? It has been well shown that people who suffer chronic pain, of necessity suffer unemployment, huge family effects, distress, carers having to care for chronic pain sufferers.
Between 1 in 6 and 1 in 5 patients seen in primary care have chronic pain and they use primary care services up to 5 times more frequently than the rest of the population, a huge impact on our healthcare system in this country. Those figures refer to 1997, so then Professor McEwen turns to the state of play at present. In 2004 he found enormous variation in the services available within the Scottish health boards for chronic pain services. Most lack a formally identified comprehensive board-wide service for chronic pain, and above all there is no national strategy for this. Professor McEwen noted that those interviewed stated that ‘all services were in some way inadequate to meet population needs.’
Multi-disciplinary approach
One of the strengths of our caring for chronic pain sufferers is our multi-disciplinary approach to this problem. We know that this is something that may well be helped by an integrated multi-disciplinary approach so that patients’ needs are assessed and then passed to the most appropriate treatment pathway according to the need. What Professor McEwen is saying is that most services around this country feel they are lacking in some aspect of that multi-disciplinary care. Professor McEwen considered multidisciplinary care and what sort of team and staffing it should have: clinicians, psychologists, nurses, physios, occupational therapists and administrative back-up. He commented that this was often lacking and he stated that in this country there is only one full-time lead consultant for chronic pain. With 200,000 people suffering from chronic pain, we have one full-time lead consultant.
There is a lack of professional staff to fill those multi-disciplinary roles, and Professor McEwen highlighted the very important work here of psychologists, noting that we really have a lack of trained psychologists to do the very valuable work of our pain management programmes.
The report also dealt with the work of an average routine chronic pain service. Most referrals are of course from general practice. We have a very, very good primary care system in this country that keeps most pain clinics busy in itself, but also pain clinics are getting more and more complex referrals from within their own hospitals. The referral rates vary from 5 to 500 per 100,000, and most services see about 150 to 250 new patients per year per 100,000 people; there is plenty of business out there and that is increasing all the time. It is been noted in pain management programmes that we almost seem to be referred two subgroups of patients; patients who are early in the disease process and up to 4 years, and those who have been suffering for over 10 years, and we need very, very different approaches to such patients to try and improve their pain relief, and as part of this it is quite clear that we need to move to earlier and earlier intervention to try and prevent chronic pain.
Duration of 3-6 months is the time that is usually accepted for definition of chronic pain…(this) must not be used to discourage early intervention.
Patients wait 2 to 6 months for a first appointment
And I think this problem can be shown very well from the waiting times quote by Professor McEwen. Usually patients wait after they are referred to a chronic pain clinic for 2 to 6 months for a first appointment. That can be up to a year. At the Western General Hospital in Edinburgh the waiting time is increasing. It is now an average 27 weeks, partly because of increased referral, but again because of lack of staff to deal with and assess these complicated cases. After that, you wait for initial treatment from 1 to 2 weeks if that is appropriate, but sometimes if you are being referred to a pain management programme in Scotland, you might wait up to 2 years.
There is some evidence comparing the reports that this situation has deteriorated in the past 10 years, and Professor McEwen quite rightly commented:
“The initial aim should be to reduce waiting times for first appointments …’
New treatments
Of course, we must not be too negative. In this country we are very innovative in terms of developing new treatments. That ranges from the Greater Glasgow Health Board new back pain services, where referrals go directly to a physiotherapy based service and try and get in an make an intervention more promptly, to Tayside where the hospital services relies on their experienced nurses for initial contact and support of referrals, to the Borders looking at remote and rural Scotland where outreach clinics are present in health centres, to changes in Cumbernauld and Kilsyth, a nurse led focus for chronic pain in a local health care co-operative. These are the things we need to encourage and congratulate ourselves, but also we need to produce a network for pain so that such advances might become the norm across this country rather than simply little islands of excellence dotted haphazardly across the country.
STRENGTHS AND WEAKNESSES OF EXISTING SERVICES
Strengths
· Enthusiastic and committed staff and a strong sense of teamwork, combining experience and additional qualifications
· Keen to expand services and pilot new developments
· Willingness to change
· Well received by patients and offering a spectrum of care
· Cross service rotation of some professions allows continuity of approach
· Rigorous multi-disciplinary assessment and tailoring of treatment to meet individual needs
Weaknesses
· Under-resourced to meet demands
· Lack of integrated service with single administrative structure
· Inadequate secretarial and administrative support
· Inadequate IT
· Inadequate input from psychology
· Patchy and uneven services across the board
· Lack of out-of-hours cover
· Dependent on goodwill and working to capacity
· Lack of time for staff meeting and continuing education
· Limited time available for education and training of others
· Patients often have to travel a distance
· Sometimes limited support from clinical colleagues and management
· Lack of clear administrative pathway for submission of development bids
Professor McEwen congratulated some strengths in our pain services. We are keen to expand, we are willing to change, and we work in a very good multi-disciplinary assessment. But there are many weaknesses.
Formal recognition for pain
Professor McEwen felt we need a formal recognition for pain as a disease entity and we need recognition of the severity and how common that is. The health boards must not be asked if they wish to produce integrated pain services, rather it should be a required level of quality service to have an integrated pain services. The services that do exist should be reviewed, because often we do not know what we have. We have to link better to community services and address waiting times. The funding issue is something I think we have to support our political representatives into addressing and accepting based on the economic evidence I mentioned earlier of benefit. Should we have a Scottish Referral Service, especially for pain management programmes? Should we have a National Forum for excellence in pain relief in this country? I think the answer to that is probably ‘Yes’ and already we have the innovative work of the National Health Scotland, Quality Improvement Scotland, working in many different ways, and I think pain would be a very useful way for that government body to move forward. We also need more resources for education and training.
A major medical and social problem
Professor McEwen concluded with a couple of paragraphs. Remember in 2004, ‘chronic pain is a major medical and social problem and a massive drain on national resources. There is evidence that not only does a comprehensive service lead to a saving in National Health Service resources, but that it leads to a substantial reduction in distress and disability, with improvements in quality of life.’ Again he stresses in his conclusions we must ‘recognise formally chronic pain as an entity in its own right and for each health board to be held accountable.’
This is good, but the report in 1994 said the same things, and I think it would be a considerable concern to all of us if we were to have in 2014 another report saying the same things again. And to finish I would say the issue for chronic pain is not whether or not we need another report, but whether we can focus on this report and require our political representatives and our health boards to take this seriously and implement as many of the recommendations as they can.
This article is adapted from a talk given at a meeting organised by Pain Association Scotland at The University of Edinburgh on the 8th February 2005. Ian Power is Professor in Anaesthesia, Critical Care and Pain Medicine, The University of Edinburgh.
The report Chronic Pain Services in Scotland by Professor James McEwen is published by the Scottish Executive, www.
[b]
Professor Ian Power writes
It is my job in this article to try and portray to what extent chronic pain still exists in Scotland today, and I’m helped in doing this because recently the Scottish Executive commissioned a report exactly on that question. I would like to highlight the main findings of that report and suggest that we ought to decide what we must do in the future to make a difference to this.
The McEwen Report
Professor McEwen was commissioned by the Scottish Executive to carry out this review of Chronic Pain Services in Scotland. This review was published a year ago, and there must be urgency in our response to it. The background is that in 1994 the Scottish Office commissioned a report and published The Management of Patients with Chronic Pain. In the year 2000, the Clinical Standards Advisory Group published an excellent document, Services for Patients with Pain. In 2002, the Scottish Parliament Health Committee produced a Spice Report (an overview of services in Scotland), and then a couple of years ago, at the same time as the Cross-Party Group on Chronic Pain was created in the Scottish parliament, there was a briefing in that parliamentary debate on clinical chronic pain.
The 1994 report of the Scottish Office said that ‘Chronic pain was probably one of the most challenging problems in medicine…a debilitating condition. Health Boards are invited to decide what priority to give to these developments and the level of resources that they would wish to direct towards them.’ This is very polite language, some might say too polite. We can reflect on what the figures are for today, 10 years later, using the report Chronic Pain Services in Scotland, July 2004, by Professor James McEwen.
Enthusiasm and Commitment
This is a good report, which is widely available, and is well worth reading. The remit was to review referral protocols, review the current range of services in each of the health boards, and draw conclusions comparing the state now to the 1994 and 2000 reports, and then recommend how we might improve the level of service across this small country.
The most impressive aspect was the enthusiasm and commitment of all those who were interviewed
In his overview, Professor McEwen states: ‘The most impressive aspect was the enthusiasm and commitment of all those who were interviewed’, but against that enthusiasm, there is an equally universal view that current provision is inadequate to meet the needs.
…Current provision is inadequate to meet the need…..
A significant disease
These are some of the figures quoted in the McEwen Report: Chronic pain affects between 1 in 5 and 1 in 6, Scottish adults. Two-thirds of these suffer moderate pain and one-third suffers severe pain, so that’s roughly 6% of Scottish adults with severe pain. The figure must therefore be around 250,000. How is it possible to ignore that? This is a significant disease process. In addition, one-third of those patients suffer chronic pain all the time, and the average duration is 7 years. One in 5 pain sufferers have the pain for more than 20 years. How much suffering does this represent in our community? Also what economic impact does this represent? It has been well shown that people who suffer chronic pain, of necessity suffer unemployment, huge family effects, distress, carers having to care for chronic pain sufferers.
One third of patients suffer chronic pain at all times – 24 hours a day, 365 days a year.
That it is such a huge problem means that we should have some urgency about pressing towards a solution for chronic pain. The fact is that we know we can make a difference. I know that many reading this either suffer chronic pain or care for patients suffering chronic pain. Look at the financial figures produced by Henry McQuay back in 1997: ‘Evidence available suggests that pain clinics reduce overall direct healthcare costs by about £1000 per patient per year.’ The evidence indicates that pain clinics generate direct health service savings equal to twice their running costs.
The impact of chronic pain is enormous on the individual, family members and the state.
Huge impact on our healthcare system
Between 1 in 6 and 1 in 5 patients seen in primary care have chronic pain and they use primary care services up to 5 times more frequently than the rest of the population, a huge impact on our healthcare system in this country. Those figures refer to 1997, so then Professor McEwen turns to the state of play at present. In 2004 he found enormous variation in the services available within the Scottish health boards for chronic pain services. Most lack a formally identified comprehensive board-wide service for chronic pain, and above all there is no national strategy for this. Professor McEwen noted that those interviewed stated that ‘all services were in some way inadequate to meet population needs.’
Some services are maintained by staff providing for chronic pain in their own time.
Multi-disciplinary approach
One of the strengths of our caring for chronic pain sufferers is our multi-disciplinary approach to this problem. We know that this is something that may well be helped by an integrated multi-disciplinary approach so that patients’ needs are assessed and then passed to the most appropriate treatment pathway according to the need. What Professor McEwen is saying is that most services around this country feel they are lacking in some aspect of that multi-disciplinary care. Professor McEwen considered multidisciplinary care and what sort of team and staffing it should have: clinicians, psychologists, nurses, physios, occupational therapists and administrative back-up. He commented that this was often lacking and he stated that in this country there is only one full-time lead consultant for chronic pain. With 200,000 people suffering from chronic pain, we have one full-time lead consultant.
There is a lack of professional staff to fill those multi-disciplinary roles, and Professor McEwen highlighted the very important work here of psychologists, noting that we really have a lack of trained psychologists to do the very valuable work of our pain management programmes.
Locally and nationally there was a clear shortage of psychologists.
The report also dealt with the work of an average routine chronic pain service. Most referrals are of course from general practice. We have a very, very good primary care system in this country that keeps most pain clinics busy in itself, but also pain clinics are getting more and more complex referrals from within their own hospitals. The referral rates vary from 5 to 500 per 100,000, and most services see about 150 to 250 new patients per year per 100,000 people; there is plenty of business out there and that is increasing all the time. It is been noted in pain management programmes that we almost seem to be referred two subgroups of patients; patients who are early in the disease process and up to 4 years, and those who have been suffering for over 10 years, and we need very, very different approaches to such patients to try and improve their pain relief, and as part of this it is quite clear that we need to move to earlier and earlier intervention to try and prevent chronic pain.
Duration of 3-6 months is the time that is usually accepted for definition of chronic pain…(this) must not be used to discourage early intervention.
Patients wait 2 to 6 months for a first appointment
And I think this problem can be shown very well from the waiting times quote by Professor McEwen. Usually patients wait after they are referred to a chronic pain clinic for 2 to 6 months for a first appointment. That can be up to a year. At the Western General Hospital in Edinburgh the waiting time is increasing. It is now an average 27 weeks, partly because of increased referral, but again because of lack of staff to deal with and assess these complicated cases. After that, you wait for initial treatment from 1 to 2 weeks if that is appropriate, but sometimes if you are being referred to a pain management programme in Scotland, you might wait up to 2 years.
Moderate to severe depression was present in 48% of patients
There is some evidence comparing the reports that this situation has deteriorated in the past 10 years, and Professor McEwen quite rightly commented:
“The initial aim should be to reduce waiting times for first appointments …’
New treatments
Of course, we must not be too negative. In this country we are very innovative in terms of developing new treatments. That ranges from the Greater Glasgow Health Board new back pain services, where referrals go directly to a physiotherapy based service and try and get in an make an intervention more promptly, to Tayside where the hospital services relies on their experienced nurses for initial contact and support of referrals, to the Borders looking at remote and rural Scotland where outreach clinics are present in health centres, to changes in Cumbernauld and Kilsyth, a nurse led focus for chronic pain in a local health care co-operative. These are the things we need to encourage and congratulate ourselves, but also we need to produce a network for pain so that such advances might become the norm across this country rather than simply little islands of excellence dotted haphazardly across the country.
STRENGTHS AND WEAKNESSES OF EXISTING SERVICES
Strengths
· Enthusiastic and committed staff and a strong sense of teamwork, combining experience and additional qualifications
· Keen to expand services and pilot new developments
· Willingness to change
· Well received by patients and offering a spectrum of care
· Cross service rotation of some professions allows continuity of approach
· Rigorous multi-disciplinary assessment and tailoring of treatment to meet individual needs
Weaknesses
· Under-resourced to meet demands
· Lack of integrated service with single administrative structure
· Inadequate secretarial and administrative support
· Inadequate IT
· Inadequate input from psychology
· Patchy and uneven services across the board
· Lack of out-of-hours cover
· Dependent on goodwill and working to capacity
· Lack of time for staff meeting and continuing education
· Limited time available for education and training of others
· Patients often have to travel a distance
· Sometimes limited support from clinical colleagues and management
· Lack of clear administrative pathway for submission of development bids
Professor McEwen congratulated some strengths in our pain services. We are keen to expand, we are willing to change, and we work in a very good multi-disciplinary assessment. But there are many weaknesses.
Formal recognition for pain
Professor McEwen felt we need a formal recognition for pain as a disease entity and we need recognition of the severity and how common that is. The health boards must not be asked if they wish to produce integrated pain services, rather it should be a required level of quality service to have an integrated pain services. The services that do exist should be reviewed, because often we do not know what we have. We have to link better to community services and address waiting times. The funding issue is something I think we have to support our political representatives into addressing and accepting based on the economic evidence I mentioned earlier of benefit. Should we have a Scottish Referral Service, especially for pain management programmes? Should we have a National Forum for excellence in pain relief in this country? I think the answer to that is probably ‘Yes’ and already we have the innovative work of the National Health Scotland, Quality Improvement Scotland, working in many different ways, and I think pain would be a very useful way for that government body to move forward. We also need more resources for education and training.
A major medical and social problem
Professor McEwen concluded with a couple of paragraphs. Remember in 2004, ‘chronic pain is a major medical and social problem and a massive drain on national resources. There is evidence that not only does a comprehensive service lead to a saving in National Health Service resources, but that it leads to a substantial reduction in distress and disability, with improvements in quality of life.’ Again he stresses in his conclusions we must ‘recognise formally chronic pain as an entity in its own right and for each health board to be held accountable.’
When asked what the key message of this report should be, there was general agreement that this was “formal recognition of chronic pain”.
This is good, but the report in 1994 said the same things, and I think it would be a considerable concern to all of us if we were to have in 2014 another report saying the same things again. And to finish I would say the issue for chronic pain is not whether or not we need another report, but whether we can focus on this report and require our political representatives and our health boards to take this seriously and implement as many of the recommendations as they can.
This article is adapted from a talk given at a meeting organised by Pain Association Scotland at The University of Edinburgh on the 8th February 2005. Ian Power is Professor in Anaesthesia, Critical Care and Pain Medicine, The University of Edinburgh.
The report Chronic Pain Services in Scotland by Professor James McEwen is published by the Scottish Executive, www.
[b]
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