This Chronic Pain Blog will keep track of all the activity undertaken by the Chronic Pain Specialty Group, noting and reporting insights along the way, and will be a shared point of contact for anyone who wished to keep up to date on the groups progress or contribute to the ongoing work. If you have any enquires about the project or any of the blog posts, please go to the Scottish Access Collaborative contact page and email us direct.
Chronic Pain Workshop One
On September 25th 2018 the Scottish Access Collaborative Chronic Pain Speciality Specialty Group met for the first time with the Digital Health and Care Institute (DHI) Design Team for their first design led workshop. The group included representation from different disciplines working within specialist pain services across the country, patient representation, third sector, service managers, consultant, GP, nurse, clinical specialist, and therapist perspectives.
The aim for the Chronic Pain group as with all the Access Collaborative specialty groups is to recommend ways that current services could be innovated to improve the patient experience and bring down waiting times. This is in line with the six principles of the access collaborative that all of the speciality sub groups are working toward.
In this first workshop, facilitated by the DHI team, the Chronic Pain group mapped out the current service ecology for chronic pain services, highlighting the key points in the service, current programs of work and examples of best practice, and prioritising some core elements of chronic pain they would like to focus on in the next two workshops. The hope is that these workshops can strengthen and build on the existing pieces of work that have already set the scene for chronic pain services in Scotland. Existing work including the recent ScotPHN report focussed in needs assessment, works by Health Improvement Scotland on chronic pain, and work on the chronic pain prescribing strategy.
To further broaden the inputs into these workshops the DHI and wider Access Collaborative team will also approach other stakeholders to offer one to one interviews in between workshops.
Key Service Elements
Patients suffering Chronic Pain, currently defined by SIGN guideline 136 as pain that has been present for 12 weeks, may start their journey in health-care at different places but quite quickly the treatment of each patient becomes very similar. Therefore, there are cross cutting themes that impact on the whole of chronic pain services and have meaningful opportunity for innovation. The following summarises the discussion between the group of expert stakeholders highlighting some of these themes.
Patient profiles were initially discussed as a key theme for chronic pain, especially the important role the patient history and their situation plays in their care. Within the group discussion the example was given that some clinics now do not take referrals from secondary care because the patient information is not there, illustrating the vital importance of a holistic view of a patient and their needs.
“you don’t get the background from secondary care”
The theme of patient profiles linked directly into the theme of Vetting. Good quality patient information is vital for vetting at secondary care to ensure patients are receiving the right care for them as soon as possible. Understanding the patient’s situation, history and their expectations from care is a crucial part of triage. The challenge is how to ensure that the person, not the symptom, is at the centre of referral information, including clear communication about ‘what matters’ to the person .
The group went on to talk about the time, or lack of, to Build Relationships with patients and elicit the type of information that is seen as imperative for allocation of appropriate care. Attendant GPs concurred that “developing a trusting relationship with the patient” is the most powerful tool in the GP toolbox. The group discussed the value in an appropriate person just taking time and talking to patients about their pain, sitting down to listen and come up with a realistic plan.
“it doesn’t have to be a nurse, just someone to have a conversation”.
This point relates to a bigger theme of Workforce Planning, and the opportunity that changes already underway in primary care provide to re-think and innovate multi-discipline teams, putting the appropriate people in place in different settings such as in the community. The group recognised there is forecast to be an increasing demand for services in future years and evidence suggests there is already difficulties with the recruitment and retention of a skilled workforce trained in treating chronic pain. Further discussion is welcomed to explore this theme.
Another big issue flagged by the group was the interaction with Mental Health Services. A significant number of patients suffering chronic pain will have a history of trauma or some mental health issues. The issue for chronic pain services is that in some areas across the country patient history from mental health services is a completely separate set of records and is blocked from other care providers, yet the patient blocked information is vital for treatment of CP holistically.
“how do we gain access to information?”
Close links between relevant clinicians is fundamental to achieving the holistic treatment of a person living with chronic pain and something the group would like to see addressed consistently across Scotland.
Education about chronic pain in general was flagged as a key element of the whole future service. A big issue raised was the lack of chronic pain education in medical and non-medical curricula, as highlighted by a recent paper by the British Pain Society. The result of this being the knowledge of health care professionals varies, in particular “what GPs know about chronic pain varies wildly” and this “needs to be tackled at a very basic level”.
One of the key themes that emerged from this first meeting was the fundamental approach to treatment for chronic pain. The group questioned whether chronic pain patients are best served being referred to a specialist pain service without due consideration being given to complimentary therapies that will support people to live well with a long-term pain condition. It was recognised that many patients are seeking a medical model and it is hard to get them to access alternative services that can often be more successful in helping them cope with chronic pain in the long term. Often this is because of the perception that medicines are an ‘official’ treatment and other approaches lack credibility. This can have a significant impact on the patient and care service. This could be an important area to focus on.
Another key theme was the language used around chronic pain, and the impact of the way chronic pain is talked about by patients, clinicians and society. The group raised the issue of the ‘three understandings of CP’: the clinical definition; the patient definition; and the societal definition. The question was: what is the unified definition and language of CP? How should we all be talking about it? What difference could that make?
Unanimously the group of experts agreed that there needs to be a single pain pathway with established supports, open to everyone and locally adaptable.
Following the general discussion about current chronic pain services the group moved on to distil some key focus areas from the general. It was agreed that generally chronic pain patients need a lot of resource in terms of clinical time and treatments. GPs perceive they have a high number of people with chronic pain seeking re-occuring appointments and there is evidence that nationally the prescription of analgesic drugs are increasing, offering meaningful opportunities to innovate the current processes to benefit everyone involved in chronic pain care. The group reviewed their general discussion to pull out those focus areas that could offer those opportunities.
Theme: Managing Chronic Pain in primary/community care
Opportunities: there is variable knowledge in terms of condition and options; lack of supports and resources. What are the options for chronic pain? What resources are needed and how should be organised?
Theme: Third Sector Supports
Opportunities: currently unsustainable with short term funding issues. Capacity is built up, trust is built up, and then all is lost when funding runs out, projects end, and jobs are lost resulting in patients suffering uncertainty and inconsistency.
GP and consultants report there isvariation in the network of support available for them, mostly impacting on GPs as they do not know who they can refer patients too in the local area, things change, they can’t keep up.
Theme: Holistic Model of Care
Opportunities: What are the ‘other’ models of care that are not the ‘medical model’. The background information on patients is imperative but hard to get. Chronic care has to be met by many individuals and thus needs to be multidisciplinary. The question was who needs to be involved and how do they connect to each other? What can we learn from other pilots in operation?
“joined up services work better”
Theme: Communication Language of Chronic Pain
Opportunity: The point made by the group was that we need a better way of talking about chronic pain, a way that helps patients and society and clinicians really understand what is going on. This ties into the need to move away from a medical model to a ‘different way”. This needs to be a formally recognised change so as not to undermine or de-legitimise the treatment people receive and the impact the condition has on their lives.
Theme: Connected Systems
Opportunity: Currently the patient record is broken up and the holistic view is hard to garner. Patient history is vital and access to this for all care providers should be addressed.
FOCUS FOR NEXT TIME
At the end of the day the group collated the collective learning from the day and identified some key areas to focus on when the they meet again later in the year. These areas will form the basis of the next discussion, but will not exclude other areas and opportunities from being raised by the group. The two main areas of focus the group defined were:
Is there broadly an accepted national approach? What does it currently look like and what would be the ideal for patients? Including exploration of community based clinics How would this be accessed (GP, Secondary, Self)? What are the ‘rules’ of access? When does it start?
Focussing on the requisite skills and career pathways for healthcare professionals involved in treating pain. Considering existing and different service models/pathways – what are the workforce needs and how could these be met sustainably?
What needs to be done in the future of CP care services and who will do it?
How can we raise the profile and perception of Chronic Pain?
Core Data and Performance Measurement for Chronic Pain. A Project to Inform National and International Improvement in Chronic Pain Treatment and Provision.
Guest blog by Magda Laskawska, Paul Cameron, Lesley Colvin and Blair H Smith
This project, commissioned by the National Advisory Committee for Chronic Pain aims to develop, test and implement a Core Minimum Dataset (CMD) for chronic pain, to be collected by all Pain Services. The CMD consists of a minimum set of essential data elements that are necessary to allow for the measurement of baseline and outcomes amongst patients attending each service. This dataset will also enable comparison between services and time periods. The following ten domains are recommended for inclusion in the CMD: age, gender, pain duration, pain severity, emotional impact, functional impact, health-related quality of life, pain site and underlying diagnosis. The CMD is based on validated questionnaires, best available evidence as well as the consultation exercise with NHS clinicians and third sector organisations.
Another primary objective of this project is the development of the Quality Performance Indicators (QPIs) for Chronic Pain Services. These QPIs are a set of standards used to evaluate the performance of pain services in Scotland. They are designed to assess the quality of care and outcomes for patients. The main sources of evidence for these QPIs are SIGN 136, the National Prescribing Strategy and the British Pain Society. Further, the QPIs are based on best available evidence from research and consultation exercises with NHS clinicians and third sector organisations. In addition, the QPIs were modelled against the four levels of the Scottish Service Model. Five different QPIs have been developed in the following areas: pain education, outcome measures, pharmacy review, service evaluation and audit, and exercise and activity therapies.
This project is central in improving and evaluating service provision for people who suffer from chronic pain. The implementation of the CMD and QPIs will provide us with a better understanding of various elements of the treatment of chronic pain such as: the prevalence and societal impact of chronic pain; the demographics and needs of the patient group; the effectiveness of any service provision; the resources that will be required to address any areas for improvement; the structure and composition of pain services and gaps that should be addressed; the availability of and access to pain services; service evaluations within pain services; and meaningful performance monitoring via the QPIs. Their introduction will also make it possible to measure patient level information such as the availability of and access to evidence-based approaches within services (pharmacological and non-pharmacological).
Data contributing to the CMD and QPIs will be collected using routine processes and information, as far as possible. We are working closely with ISD and eHealth in NHS Scotland to put this in place. More information on the CMD and QPIs is available at the NRS Pain website.
Chronic Pain Workshop Two
In late October 2018, the Scottish Access Collaborative chronic pain specialty group met for the second time to continue their work into chronic pain in Scotland. There was again representation from across chronic pain management including patients, GPs, third sector, and pain specialists from many clinical disciplines. Having multiple perspectives from a range of stakeholders in chronic pain care means that any suggestions for change developed during our workshops can be critically discussed from different viewpoints, ensuring suggestions are realistic, patient centred, and are sensitive to national programmes of work underway in chronic pain.
In this second workshop, the aim was for the group to take their insights about current chronic pain treatments and management from workshop one, and distil them down into some key challenges and opportunities for chronic pain services. It would be these challenges that they as a group would collectively address in the final workshop three.
Areas for focus
Following the first workshop, the digital health and care institute (DHI) design research team collated and reviewed the group’s insights and experiences. Using these insights, the key areas for focus in current chronic pain care that the group collectively decided upon in workshop one, where located on high level pathway maps created by the DHI team. These maps were presented back to the group to sense check we had the right areas for focus, add more detail to the maps, and extend the critical analysis of the insights to look more deeply at the influencing factors surrounding each focus area. The high-level pathway maps covered four key themes of:
- Managing chronic pain in primary and community care with third sector support
- Disjointed model of care and disconnected systems
- Communication and language of chronic pain
- Workforce planning and education
To begin with a general discussion amongst the expert team raised and debated some key points from multiple perspectives about current chronic pain management. The group acknowledged the ‘enormity’ of chronic pain in general practice and a real variation in what is available to GPs in terms of knowledge and access to different models of community care. The discussion at times centred on the language and communication of chronic pain and the importance of getting this right at the start of a patient’s journey. This was seen as especially important for supporting patients for the long-term management of pain, talking about pain honestly and clearly at the very beginning to help set expectations and shape a way of thinking about pain that is realistic and positive. Cutting through much of the discussion was workforce and training; the conversation highlighted the need to understand the roles needed for modern chronic pain management, including both health and non-health professionals, before appropriate training can be conceived.
Locating the challenges
Following the general discussion of the previous workshop key themes, and an overview of the aims for this second workshop, the group broke into four small working groups each taking one high-level map and unpicking each related theme with the aim of adding the perspective of all the stakeholders in chronic pain management. Once this task was complete each working group fed back their annotated map to the whole room so we could capture further perspectives on each theme.
How might we...?
Once all the four themes had been annotated, fed back, and discussed by the group the next task was to think about the key factors influencing each theme and from there develop a series of opportunities. The opportunities were framed as challenge statements that ask ‘how might we’ do something that can improve, change or innovate current practices for chronic pain. Once again each small working group took on the task of scrutinising their theme, this time mapping the influencing factors and constantly asking ‘why’ each factor was an influence, and ‘what’ was it that influenced the influencing factor. The aim was to drill down into the leverage points that could be instrumental in any practice change, and turn these into challenges. The outcome was a series of ‘how might we’ statements for each theme that we will take into the next workshop to prioritise and collectively respond too.
The challenges the group developed will be checked and prioritised, and some potentially combined in the next workshop before the most salient are addressed. All of the ‘how might we’ statements were validated challenges, but it will be out of scope to address them all in the final workshop. However, for now, we can list them all against each theme.
For Managing chronic pain in primary and community care with third sector support the challenges were:
How might we
- Enable people to take ownership & appreciate need for self-management?
- Screen and identify patients who may be at risk of addiction early in the journey and mitigate the risk?
- Support self-efficiency without creating dependence in an affirming non-judgemental way?
- Have good conversations with patients with chronic pain?
- Bridge the gap between acute and chronic pain?
- Make information about chronic pain self-help widely accessible?
- Motivate patients to use information available?
For Disjointed model of care and disconnected systems the challenges were:
How might we
- Share best practice on an ongoing basis?
- Ensure there are enough resources & that we have the right skillsets?
- Ensure sustainable funding at all levels of service?
- Support patients to self-manage and be enabled and be educated?
- Ensure primary care practitioners get quality time for assessment?
- Improve IT systems and communication compatibility & provide good quality consistent data?
For Communication and language of chronic pain the challenges were:
How might we
- Communicate the strategy of “de-medicalisation” more effectively?
- Demonstrate the benefits of having enough time to communicate well & develop a shared understanding, as a means of making more efficient use of health care resource?
- Measure the impact of the non-medical models of care?
- Check the patient’s understanding of what has been said to them?
- Agree and communicate common messages and language including phrases not to use?
- Inform post graduate multi-professional education?
- Support the patient while they are waiting to be seen by secondary care?
- Bring chronic pain management earlier into the pathway to help the transition from acute to chronic?
For Workforce planning the challenges were:
How might we
- Develop a clear model of care including pathways and modern outpatient approaches?
- Measure the current and future staffing service provision and consequent outcomes?
- Develop and instigate quality performance indicators and identify areas needing further investment?
- Identify defined roles of each type of service and the associated training needs?
- Support health care professionals through further education and training?
- Provide sustainably-funded services within which educated heath care professionals can commit their career?
Now that we have a collection of challenges agreed by the group, the next step will be to prioritise and address the most salient. This will be the focus of the third workshop in November 2018, where we will unpick the challenges and form suggestions to take challenges forwards beyond the three workshops. All of the work and knowledge generated by the group over the three workshops will be presented in the chronic pain Access Collaborative Report that will be published through the Access Collaborative website.
The Scottish Access Collaborative was created in 2017 to work closely with multi discipline teams from a range of specialisms to collectively develop new ideas for health service improvements in Scotland. A crucial part of the ongoing work of this collaborative is to serve as a platform where expert practitioners and patients can come together to share experiences, ideas and examples of service innovation. Recently, at a chronic pain specialty group’s workshop, colleagues from NHS Grampian shared their idea for a new level service for supporting long term pain management. This short blog gives an overview of their service development proposal.
Chronic Pain Service Development Proposal: guest blog by Dr. Saravanakumar Kanakarajan
There is unmet need for chronic pain services in Grampian, against a national and local strategic context to shift the balance of care, from Acute to community settings.
Grampian have identified the two key needs of:
- Level 2 – a need to increase capacity within primary care to manage chronic pain, to provide support for primary care practitioners, develop shared care arrangements, and reduce the need for secondary care referrals
- Level 3 – a need to provide faster access to specialist assessment and treatment, in settings that are ‘closer to home’
Both these aims can be served by developing an integrated model of care where allied healthcare professionals with a specific skill set deliver a range of pain management options and serve as liaison between primary and secondary care with continual support from secondary care services. It is envisaged that the following skill set is needed for the delivery of community pain services:
- Comprehensive assessment of pain including its impact on the patient and their family
- Provision of person centred care integrating the perspectives of patients, social support systems, available resources as well as promote health and wellbeing
- Use of appropriate pharmacological and non-pharmacological interventions for pain management
- Use of integrated bio-behavioural approaches (enhancing motivation to change and early intervention techniques) to promote health and well-being
- Communication skills for interdisciplinary work
The above skill set are available across the range of allied health care professionals such as nurses, physiotherapists, occupational therapists, health psychologists and pharmacists, trained in pain management. Any one professional group is unlikely to fulfil all the key skills. So, a team of professionals from either nursing and pharmacy, or psychology, occupational therapy, and physiotherapist will be necessary to run this community service, thereby offering a multi-disciplinary approach complementing other’s skills.
This service will be the first access point as well as provide a step-down care from secondary and tertiary care services. They should be able
- To enable, educate and equip patients to pursue self-management
- To liaise with social care and third sector for those people who need simple sustainability with chronic pain
- To identify and intervene early in course of chronic pain, preventing development of chronic pain associated distress and disability.
- Implement the treatment plans such as medication management and mini-pain management programs
- To escalate the care for the needed patients through multidisciplinary team meetings with secondary care
- To provide a continuity of care in the complex pain patients
To provide a seamless care to chronic pain population as well as their ongoing professional developments, they should be provided by the secondary care pain team or supported via monthly MDT meetings.
It is proposed that allied health professionals, trained in chronic pain management, work within a primary care cluster for six months, using a service improvement methodology to evaluate its impact. From the outset there is recognition that this work would benefit from being located within wider Acute and HSCP redesign programmes.
One specialised pain physiotherapist
One specialised chronic pain nurse
New referrals from the identified cluster practices will be vetted to this service. The review patients from these clusters will appropriately be considered for step-down care.
- Comprehensive assessment of pain using biopsychosocial model
- Initiate actions to manage pain and assess the effectiveness of these actions
- Medication review including implementation of medication plans suggested by secondary care
- Brief intervention group
- Post injection follow-up
The following benefits can be made evident using service improvement methodology:
- Improved self-management
- Increased capacity to manage chronic pain in primary care
- Improved access to specialist services
- Improved person centred care
- Reduced ‘inappropriate’ prescribing and reduced pharmacy costs
- Reduced secondary care referrals (to the pain service, potentially also rheumatology, neurology, diabetology, orthopaedic and neurosurgery)
- Reduced secondary care waiting times
- Reduced A&E attendances
- Reduced unscheduled admissions
The proposal is a test of change intended to increase service provision to people living with chronic pain through the shift of activity from Acute to the primary care setting. It is fully expected to generate evidence showing improved patient, service and health system outcomes.
Dr. Saravanakumar Kanakarajan is clinical lead for chronic pain and a consultant anaesthetist with special interest in pain medicine
Guest blog by Chris Bridegford, founder Affa Sair
Affa Sair was formed in April 2015 with the aim of re-instating a Pain Service at Dr Gray’s Hospital in Elgin. With a small but rapidly growing membership of eighty, the re-instatement of a Consultant-led Pain Service was achieved in March 2016. Now, with 430 members, the group strives to ensure that NHS Grampian maintain a suitable Pain Service at Dr Gray’s Hospital.
The Group now also provides an on-line safe haven for chronic pain sufferers, where they may freely discuss their condition and pick up hints and tips from other sufferers together with articles and documents researched by the group. As well as their virtual presence, monthly meetings with guest speakers, are also held in Moray College. These meetings allow fellow “Chronics” to meet face to face, to question the speakers, and to share their experiences of living with chronic pain. Affa Sair aims to educate the public, politicians, organisations and NHS Staff on the needs of chronic pain sufferers and ultimately to have procedures and treatments carried out in Elgin, thus cutting out the need for Moray patients to make the difficult and draining journey to Aberdeen.
In 2017 Affa joined with Glasgow School of Art in a project called The Language of Pain with the aim of developing a joint language so that medical professionals and chronic pain patients can understand each other. This neatly ties in with the Chronic Pain Speciality Sub Group’s agreed Focus Area of a better way of talking about chronic pain, a way that helps patients and society and clinicians really understand what is going on.
Affa Sair completely shares all six ideals of the collaborative but especially that ‘patients should not be asked to travel unless there is a clear clinical benefit’. This was after all, the primary reason Affa Sair was formed; as getting to any Pain Service from Moray previously meant a round trip of 150 miles, with more than 4 hours travelling time if done by public transport.
This year, the biggest worry for Moray chronic pain sufferers or “Chronics” as members are called, is the increasing waiting times for both first time and return appointments. Looking at ways to improve this situation is something that Affa Sair members would strongly advocate as something that could greatly improve their experience of chronic pain services.
Affa Sair supports chronic pain sufferers through their members and maintains an online presence where you can find out more about their meetings, join the closed Facebook group and follow the Affa Sair blog.
Guest blog by Anita Stewart, Dr Blair Smith & Dr. Saravanakumar Kanakarajan
The main aim of the Scottish Access Collaborative is to work collectively with multi discipline teams, to sustainably improve NHS services for patients and staff. An important step in any re-design process is getting a firm grasp of ‘what happens now’, before finding areas that present opportunities for innovative change.
During our second design led workshop, some of the group focused their conversation on the underlying conditions causing chronic pain (based on their experiences of the people they currently treat in specialist pain clinics).
Specialist pain clinics treat a number of different conditions. The nature of these will vary depending on how local services are configured. For example, in some areas headache referrals will usually be sent to neurologists, and temporo-mandibular disorders will often be seen by dental services. This means that the relative frequencies of the reasons for pain will vary a lot between different pain services. However, it is possible to summarize a national picture for the reasons for chronic pain based on the collective group experience, with the understanding that this picture will vary at local level.
Next year will see the launch of the International Classification of Diseases, 11th edition (ICD-11), which, for the first time, will include classification of chronic pain. The launch will be accompanied by a series of Topical Reviews in the journal Pain, to be published in December. Until that publication, the categorization can be seen in summary form in the paper at:
Reasons for Pain
- Musculoskeletal back and/or neck pain, common conditions seen in many pain clinics and increasing due to change in demographics, with important psychosocial factors involved in their development and persistence and life style.
- Neuropathic pain is very common in most clinics, with a range of aetiologies, and sometimes idiopathic.
- Cancer-related pain is a common reason for chronic pain, and is increasing in prevalence and duration as cancer treatment and survivorship improve.
- Chronic Post-surgical pain is common after many operations (particularly thoracotomy, hernia repair and breast surgery, as well as amputation. This category also includes failed back and neck surgery syndromes as common presentations.
- Fibromyalgia is at the end of the larger spectrum of Chronic Widespread Pain, and is usually idiopathic with no identifiable diagnosis.
- Gynaecological and testicular pain, which are both common and distressing, usually presenting after a series of investigations which have failed adequately to explain the pain
- Visceral pain, including gastroenterological and other abdominal pains, usually not fully explained by demonstrable pathology
- Complex Regional Pain Syndrome (CRPS), a persistent and severe pain is rare in the experience of most clinics, but is more common for others.
- Post-stroke pain
- Facial Pain
- Depending on the local provision of gastroenterology and neurology services, headaches and gastroenterology related pain can be important causes for pain seen in specialist clinics.
Understanding the Landscape for Pain
Creating a reliable and detailed picture of the current landscape of pain for Scotland is at present challenging, due to a lack of consistent available information on the causes of pain. The absence of reliable data is one of the reasons why the cause of pain is a question that is planned for inclusion in the Core Minimum Dataset (CMD), work that is currently under development and which will include a classification identical to that in ICD-11. For more information on the CMD visit the NRS pain website and read a recent blog post by chronic pain specialty group member Blair Smith and colleagues here on the Access Collaborative website.
Guest blog by Dr Caroline Cochrane (Consultant Clinical Psychologist, Lead for Pain Management Programme and Clinical Health Psychology services NHS Lothian; Current Chair Leads of Scottish Clinical Health Psychology Services)
I think it is vital to take a holistic view that includes the psychological impact of pain at all points of the pain pathway which includes primary care. The main evidence for pain management programmes comes from them being driven by CBT and it is vital to ensure that there is the right dose of this, administered by the right professionals, in primary and secondary care. I would strongly advocate clinical health psychologists being key parts of pain pathway developments and members of primary care MDTs
These are my 5 key take home messages:
- Pain and trauma link
Between 1 in 2 and 1 in 3 people with chronic pain may have had some trauma including sexual, physical and emotional (Goldberg, Pachasoe & Keith, 2009, Aaron et al., 1997, Walling et al., 1994, Linton, 1997). It is very important to factor this in to our treatment plans for people with chronic pain as pain and trauma have a close relationship and negatively impact the course and outcome of each other (Otis, Keane &Kerns, 2003)
- PMP’s need to be based on cognitive behavioural principles and can be offered in primary, secondary and tertiary care.
The British Pain Society document (2013), guidelines for pain management programmes in adults’ state that “PMPs, based on cognitive behavioural principles, are the treatment of choice for people with persistent pain which adversely affects their quality of life and where there is significant impact on physical, psychological and social function. There is good evidence for the efficacy of cognitive behavioural PMPs as a package, compared with either no treatment or treatment as usual, in improving pain experience, mood, coping, negative outlook on pain and activity levels. (Morley et al., 1999; Guzmán et al., 2001; European Guidelines, 2004; Koes et al., 2006; Hoffman et al., 2007; Williams et al., 2012).
PMP’s are effective, cost effective, reduce health care consumption, reduce medication use and onward referral to specialist services. Traditionally they were only for people who had failed prior medical interventions, however, recent research has suggested a less intensive PMP but still based on the suggested principles is effective and cost effective if delivered at an early stage. (BPS, 2013, Linton, 2000, 2005; Pincus et al., 2001). This means that PMP’s of varying degrees of intensity can be offered at a primary, secondary and tertiary level depending on degree of complexity.
- Getting the treatment dose right
It is very important that there is the correct “dose” of CBT based PMP interventions to produce the treatment effect so that people with chronic pain are able to find a PMP treats the issues troubling them most. Pain education is a key part of pain management, but:
“A PMP consists of a variety of methods for directly and indirectly producing behaviour change, including methods based on cognitive and behavioural therapy, learning and conditioning processes, skills training, physical exercise and education.” (BPS, 2013). What is crucial is to get the right “dose” of treatment so that people with chronic pain are able to rely less on medication and medical intervention and balance this with pain management.
Specific cognitive and behavioural methods include goal-led graded exposure and activation, behavioural experiments and cognitive restructuring, and mindfulness including acceptance and compassion focused approaches.
Key disciplines in a pain management programme are psychology and physiotherapy and there are clearly laid out guidelines in the BPS document relating to the levels of intervention, which professionals need to be involved and the structure and content of a PMP.
- It’s not all in your head – a clinical health psychology service may help more than adult mental health.
Clinical health psychology services are set up specifically to offer psychological intervention, consultancy and training for those who have been affected by, or who work with people with physical health conditions, including pain and fatigue. They offer specialised input to help understand a person’s difficulties in the context of their physical health conditions and offer treatment and suggestions about the way forward.
Clinical health psychology does not take the position that people have a mental health condition because they suffer from anxiety or depression relating to chronic pain or a long-term condition. In essence we do not believe that ‘it is in people’s heads’, but also take very seriously that chronic pain or a long-term condition can be traumatic, can ‘mess with your head’ and can impact negatively on one’s mood and outlook.
Usually clinical health psychology services do not have long waiting lists, and offer short term focused pieces of work, as well as training and consultancy to members of MDTs. Often clinical health psychologists are embedded in, or run PMP’s. From a pain management perspective, the CBT/psychological content of PMP’s should be overseen by a pain trained clinical health psychologist to ensure the right dose of CBT treatment is present in a PMP.
Clinical health psychology services often liaise with local mental health services and can help with onward referral to these services if necessary.
- Collaboration is the way forward, with local pain services being the development hub for all interventions to ensure good pathway coherence and clinical governance.
All Boards have local pain services that include pain management. These (Level 3) services are often located in secondary care and have the most expertise in chronic pain management in a Board. As such it makes sense for them to be the development hub and partners in collaboration with primary care professionals who often know their patients in a lot more detail. It is vital that primary and secondary care link up, as well as the third sector, so that there is coherence in terms of a treatment pathway, maximum collaboration and a shared understanding of ‘who is offering what’ and materials that have a high degree of consistency, and good clinical governance.
Guest blog by Gregory Hill-O’Connor (Our Voice Coordinator Health and Social Care Alliance Scotland (the ALLIANCE))
ALISS is A Local Information System for Scotland funded by the Scottish Government and delivered by the Health and Social Care Alliance Scotland (the ALLIANCE).
It is a national service, with a number of digital products, with supporting engagement services.
We believe that the people of Scotland should be able to access the right health and wellbeing information, in the right place, at the right time.
- Communities know best what keeps them well.
- Decentralised data management model.
- No ownership of information, only responsibility.
- Crowdsourced data collection and curation model.
- Open and transparent in our technology, data and licencing.
- Create Once Publish Everywhere.
- ALISS contains information from Public, Private and the Charity Sector.
- To increase the availability of health and wellbeing information for people living with long term conditions, disabled people and unpaid carers
- To support people, communities, professionals and organisations that have information to share
- To ensure that stakeholders are informed, skilled and confident in the use and application of web services and that they are connected as part of a wider community of practice
- To ensure that ALISS is used and is strategically aligned with Scottish health and social care needs
The collection, management and use of health and wellbeing information is fragmented, with varying degrees of quality, accuracy and relevance. The information is likely to be stored in legacy IT systems or held in ad-hoc localised systems, individual websites, applications, spreadsheets and other closed-off tools and systems and is very rarely used anywhere close to the potential of good quality, relevant health and wellbeing information truly has.
To explore this information challenge even deeper, our experience shows that it is relatively straightforward to enter or add information into a system – it is the maintenance of that information that is the real challenge. Due to the fragmented and siloed nature of our landscape, defining who “owns” the information can be challenging: Whose job is it to maintain the information? Whose responsibility is it to upkeep the information? Add to this the fluid and transient nature of some Third Sector and Public Sector services and it all accumulates into a significant information management and governance challenge.
ALISS is a directory of services that is designed to be integrated with third party search tools so that the information can migrate to where people search for information.
The information on ALISS is gathered in multiple ways. there are agreements with health and social care partnerships, third sector organisations, health boards and commercial businesses to share their info with ALISS and locate in a single directory. Furthermore, individuals are able to add listings to ALISS. This follows the principle that it is individuals who know community services best. Therefore, if somebody is running a small, volunteer led peer support group they are able to put this on ALISS so that people can find it.
With regard to maintaining the information, ALISS has adopted the ‘Wikipedia model’ whereby users are able to request changes to listings if they know that services have changed. There are also mechanisms for people to be responsible for a listing if they run the service or use it regularly that allows for the maintenance of information.
ALISS can be accessed via www.aliss.org
Chronic Pain Workshop Three
November 2018 saw the Scottish Access Collaborative Chronic Pain speciality group come together for the third and final time in their series of design led workshops. For this last workshop, the Digital Health and Care Institute design research team collated the insights and issues gathered from workshops one and two, and used them as a basis for a series of innovation challenges for Chronic Pain services in Scotland. The challenges were framed as a series of ‘how might we’ questions that focussed in on the groups’ collaboratively developed ‘key areas for focus’. The Chronic Pain group had developed a wide variety of questions, and so the first task was to review and prioritise them, selecting the most salient to address during the workshop. In some cases, the ‘how might we’ questions were similar in their content or had a shared theme; in these cases the group decided to combine questions, and in some cases re-word them to reflect the change.
Once ranked and prioritised, the whole group broke away into smaller multi-discipline working groups, each addressing individual questions. Once each group had developed some responses and suggestions to tackle each ‘how might we’ question, their ideas were presented back to the whole group for wider discussion and refinement. The following summarises the ideas from each working group and the discussions that took place with the whole group.
How Might We……
1. How Might We:
- Allocate available resource to educate, train, supply, and retain health care professionals with the right skillsets in the right places? (NEW)
- There is a known shortfall of anaesthetic pain trainees.
- Many health care professionals lack knowledge, confidence and time to manage pain properly.
- There is insufficient pain education for all health care professionals.
- There are no clear career pathways for pain in non-medical healthcare disciplines or community services.
- There is no clear model for the correct number and distribution of pain health care professionals across the country. A positive development is coming from the Faculty of Pain Medicine which is proposing credentials in pain medicine for non-anaesthetists to the General Medical Council.
- Making a career in pain attractive through training, practice, funding, career progression support, realistic expectations of clinical outcomes, infrastructure, and contracts.
- Developing credentials for non-anaesthetists, and expanding this to non-medical health care professionals both at a high level, and at the equivalent to what is currently available at lower levels.
- Shifting the current care model from a traditional medical model to a mixed non-medical, primary care, and community service provision.
- Establishing a standardised framework for training in pain, starting early on in undergraduate training in all disciplines, and stretching all the way through all subspecialists.
- Tailoring service delivery to local circumstances including geographic variation by creating for example a hub or community service or remote delivery in order to make efficient use of scarce resources.
- Taking on a project to develop a national plan, suggesting what the correct numbers of chronic pain health professionals should be and taking into account regional variation. This could be based on a consensus among multi-disciplinary health professionals such as an expansion of the SAC chronic pain specialty group.
2. How Might We:
- Develop a clear model of care including pathways and modern outpatient approaches?
- Bring chronic pain management earlier into the pathway to manage or prevent the transition from acute to chronic pain?
- Currently, pathways vary from area to area, they are not joined up between primary and secondary care, and access to expertise varies.
- There is a lack of coordination in some areas, and assets and clinical resources are not shared.
- There are often multiple referrals to multiple services, and high patient expectations.
- There is a tendency to jump to cause and cure initially when a longer and clearly defined identification process is needed.
- Some pain management programmes have rigid referral criteria that prevent patients coming into the system.
- Compared to the number of people whose chronic pain is managed in primary care or the community, there is a small number of patients seen in secondary care but they represent a very high level of complexity.
- There is a lack of definition of what is ‘acceptable’ pain and what is achievable in terms of management. There are inconsistencies and different approaches between different clinicians.
- The GP does not have to be the first port of call, there are other professionals who can provide valuable input.
- Creating a toolkit for early (at 12 weeks) identification of people who can enter self-management programs / strategies for chronic pain
- Creating a toolkit to help identify patients at risk of experiencing complications of their pain early on in the pathway, especially with regards to addiction and misuse of medication.
- Clarifying the pain management pathway between acute and chronic pain in primary care using a multidisciplinary approach.
- Looking at pain management programmes, and supporting early intervention in primary care.
- Providing clear guidance for primary care, strengthening links and communication between primary and secondary care, and establishing clear multidisciplinary pathways initiated at 12 weeks which include educated and supported self-management with a range of options, and a flag on the system in terms of potential issues around prescribing
- One issue is that the investigative stage (i.e. the attempt to find a diagnosis/cure) can take anything up to three years and sometimes longer. The idea is to establish that a patient has chronic pain during that stage and get them into supported management strategies within primary care and within a multidisciplinary approach including psychology, physiotherapy, pharmacy and occupational therapy.
- As part of an MDT approach, there is a need for some way of knowing a patient’s care holistically and to flag up indicators, such as how much medication has been prescribed over a set period of time, the multiple investigations a patient has had over a set period of time, or if they are waiting for an operation or procedure. This information can then be used to offer people the right MDT care early on in the pathway, rather than after a lengthy period of investigation for example.
- A multidisciplinary setup should be on a locality basis, based in communities accessible to the patients who have most difficulty accessing services, for example within GP cluster level.
3. How Might We:
- Make people aware of what self-management is and what options are available? (REPHRASED)
- It is agreed that a tiered approach can be haphazard in terms of self-management.
- Resources for self-management can be transient, often based in the 3rd sector, voluntary organisations, and are often dependent on specific individuals (for example peer support groups).
- There are issues of access to other social prescribing options, such as being able to afford to go swimming or to go to the gym.
- Linking strategies and suggestions into the different levels of stepped care.
- Providing resources which are more long-term and sustainable, and using social prescribing.
- Supporting ‘participant graduates’ who can provide peer support and mentoring.
- Adopting an escalation and stepped approach to patient self-management. Considering what level of support people need, e.g. supported self-management, guided through a process, or peer support.
- Educating and self-management support earlier in the pathway.
- Better signposting to community services, including public health initiatives to raise awareness of what is available to try and tackle expectations.
- Creating a charter of rights, including what we can expect at different stages in the pathway, what is needed and what is available.
- There is a danger of labelling patients early on when they are still undergoing investigation. They do not want to think of themselves as having chronic pain. It is strange to tell someone “I am putting you in a programme but I don’t know what it is yet”
- Balance between institutionalising a patient (which is often the opposite of what you are trying to achieve) and de-medicalising.
- If we want to reduce and change the expectation of receiving medication when you go and see a pain service, we need to make sure there is something that can be offered instead.
- It needs to be a positive thing, a positive reinforced step at every step of the journey.
- Reinforcing self-management as a positive step which involves education at both sides.
- Language is important. Do we need to “put someone in a programme” rather than I am offering you options?
- There is a difference between pushing people into self-management and pulling them. Right now, it is just clinicians saying go over there and do that.
- There needs to be more awareness around how the medication unfortunately does not ‘fix’ pain. A public health campaign is a great idea.
4. How Might We:
- Measure the current and future staffing service provision and consequent outcomes?
- There are some recent and in-progress developments in this area, especially around secondary care specialist staffing. We are less clear on primary care staff involved, and less clear on non-chronic pain specialist staff who are providing pain services which may or may not be badged as chronic pain.
- We are unclear on non-NHS service provision – yet most self-management support is not part of the NHS.
- There are many systems currently in development or at implementation, but it will take time for them to achieve robustness with implications for how we use this material.
- Capturing data meaningfully to impact staff definition and recognition.
- Mapping against Scottish chronic pain service definitions to capture who is doing what, where and how.
- Trying to achieve visibility and clarity of the service.
- An incremental set of changes would be useful:
1. People within specialist services need to record things that are meaningful for chronic pain.
2. If you are providing chronic pain services you need to be using the same data sets.
3. Recognition of chronic pain treatment supported in primary care.
- Multi-morbidities and chronic pain: we did not discuss this group of patients specifically.
- This is a field where patients hugely benefit from social prescribing and self-management, yet most government measurement is based around number of drugs prescribed and waiting times.
5. How Might We:
- Ensure sustainable funding at all levels of service? (did not cover education / training / workforce)
- There is no long-term funding plan year on year, which means the third sector cannot plan effectively. Funding comes in isolated pots, and there is too little cross-over.
- There is a mismatch between government initiatives and what Health Boards deliver. Historically, chronic pain has been a low government priority, it is not as ‘glam’ as other chronic conditions.
- Funding is often reactive.
- There are pressures on the primary care workforce and a loss of continuity.
- The funding model is too short-sighted, target driven, and not based around investing for the future.
- Fostering a better attitude and awareness at government and chief executive board level, and creating better representation of pain at those levels regionally.
- Fostering better awareness of the multidisciplinary nature of pain delivery.
- Using short-term funding such as waiting list initiatives better, as well as funding long term changes by planning funding in three year cycles rather than over one year.
- Ring-fencing money for pain, and using this better to bridge gaps between secondary care, community services and allied health professionals’
- Looking at standards, outcomes and costs, in order to create sustained and ring-fenced finance for chronic.
- There is a need to count staffing and chronic pain clinics at the very least. Can this be related to the recommendations of the faculty of pain management? Without appropriate staffing, nothing can be done.
6. How Might We:
- Communicate the strategy of ‘de-pharmaceuticalisation’ more effectively? (REPHRASED)
- Agree and communicate common messages and language including phrases not to use?
- The strategy at the moment consists of lots of disparate policies, there is a need to try and bring this together into a coherent message.
- The practice of shared decision making varies considerably. However, having these conversations is the main way de-medicalisation happens.
- People often “like taking pills”, and it is a challenge for healthcare professionals to have the conversation for that not to happen, which may be time-consuming.
- Establishing the message that medication is part of a wider therapeutic response, a ‘biopsychosocial’ approach.
- There needs to be a broader brush approach. The responsibility of the chronic pain community is to locate themselves within that broader message.
- Chronic pain is unlikely to go away, and this needs be clearly communicated.
- Develop alternatives to medicine. If you take someone’s medication away, what is there instead?
7. How Might We:
- Make information about chronic pain self-help widely accessible?
- Motivate patients to use information available?
- There is a wide range of information out there, yet this information is not always shared or consistently used. Local resources that might be useful nationally are not accessible or widely known.
- There is no clear, consistent guidance on what is suitable or available information. Lots of steps are required to get information, not everyone has internet access, not everyone can read or understand the information, there is no common language, it is not necessarily reliable information, and the information is not always visible.
- Making information accessible and available at the right time.
- Normalizing the message that self-help is the norm rather than medication.
- Supporting GPs to have these conversations with clear information of
- available resources irrespective of locality.
- Creating a resource to facilitate helpful, patient-centred conversations, aimed at maximising self-help options, between patients and professionals in primary care*.
- Person, community, primary and secondary care using same language and approach providing information which is simple to find, consistent, up to date, and validated.
*One Navigator Tool has already been developed by Pain Concern for this purpose http://painconcern.org.uk/talking-to-your-doctor/
- Self-help needs to mean accessing support, for example through link workers, rather than simply managing it alone.
- There is a variety of support available; no one fits all, and there needs to be guidance through these options.
- There should be pain education or long-term condition awareness in schools to move beyond a public health campaign
The DHI design research team will now take the Chronic Pain specialty group suggestions and add them to the Access Collaborative Chronic Pain Report. The report will be reviewed and published through the Access Collaborative website in 2019.
Guest blog by Lynne Sutherland on behalf of North West Angus GP cluster
The test of change was proposed by the four GP practices within North West Angus to develop a new primary care based service for their patients living with chronic pain. It is widely documented that around 20% of the population are living with chronic pain. People with chronic pain are also five times more frequently to use primary care services than those without. The vision was to provide patients with access to “Pain Coaches” who could deliver one to one patient-centred care to improve overall health and well-being whilst living with chronic pain. This was an identified need for patients to provide timely access to support, reduce GP appointments, referral to secondary care and possibly a reduction in prescriptions required.
Level 2 patients with chronic pain (Chronic Pain Scotland Service model) identified by the GPs as adults with chronic pain wishing to improve their level of functioning and ability to manage their chronic pain by exploring non-pharmalogical options. Patients are also seen within 2-4 weeks of referral to prevent the documented negative effects of longer waiting times and provide a timely response to the patient’s commitment to change.
Two highly experienced Physiotherapists with backgrounds in mental health and MSK services have delivered the Pain Coaching sessions and part of the test of change was identify the skill sets used when working with patients.
Assessment includes a biopsychosocial assessment establishing “What matters” to the patient. It was agreed to commit to a one hour assessment time to allow the patient to fully share their pain journey and establish patient centred goals with a solution-focused approach. Review appointments have been scheduled at 30 minutes and the average number of sessions including assessment has been 3-4.
Skill sets used have included a blend of Health Behaviour Change, Motivational Interviewing , Explain Pain concepts and tools (Butler and Moseley), mindfulness, physiotherapy, supported self-management using the Pain Management Plan book , relaxation techniques, personal outcome approach and coaching skills. Also appropriate signposting to Pain Association courses, referral to exercise scheme, psychology and social prescribing.
Outcomes have been measured using the Global Improvement Scale (GIS), patient feedback questionnaires, goals met and effects on medication. The majority of patients have reported between 1 and 3 for the GIS (1= very much improved, 2=much improved and 3=minimally improved). Patient feedback has been positive with one of the main factors being appreciation of the time given to be heard. Feedback has included “I now have Fibromyalgia, Fibromyalgia doesn’t have me”, “Invaluable service – although my pain hasn’t changed yet my outlook on it and my life has”, “Brilliant having the time and space to be listened to and improve my understanding of pain”. Patients often report they have found it too challenging to attend group Pain Association meetings and have preferred the one to one support. They have also reported the benefits of being able to be seen within their local GP surgery
Goals met include:
- Reduction in analgesia
- Increase in physical activity
- Return to work or volunteering role
- Greater sense of control of pain
- Resuming previous hobbies
- Improved family relationships
- Improved well-being
There have been some reductions in medication and this data continues to be gathered.
The current funding for the test of change is due to finish in March 2019 but the group is hoping to source further funding to establish more data and outcomes and refine the service for phase 2 of the project.