National Advisory Committee for Chronic Pain minutes: May 2021
Minutes from the meeting of the NACCP on 26 May 2021.
Attendees and apologies
Attendees
- Dr John Harden (JC), Scottish Government Deputy National Clinical Director, Chair of NACCP
- Aline Williams (AW) NHS GG&C Pain Service (Service Manager rep)
- Angela Donaldson-Bruce (ADB) Versus Arthritis (3rd sector rep)
- Arlene Byrne (AB) (Patient Reference Group representative)
- Professor Blair Smith (BS) NHS Tayside (CMO Speciality Adviser)
- Carla Kaspar (KC) Friends of the CIC (3rd sector rep)
- Catherine Hughes (CH) (Patient Reference Group representative)
- Carolyn Chalmers (CC) (Improvement Adviser, Modernising Patient Pathway Prog).
- Chris Bridgeford (CB) Affa Sair (3rd sector rep)
- Emma Mair (MPPP Primary Care Clinical Lead)
- Hussein Patwa (HP) (Patient Reference Group representative)
- Ian Semmons (IS) (Patient Reference Group representative)
- Dr Jacqueline Mardon (JM) – NHS GG&C Centre for Integrative Care
- Jenny Gow (JG) (Patient Reference Group representative)
- Kathleen Powderly (KP) (Patient Reference Group representative)
- Dr Kieran Dinwoodie (KD) (MPPP GP Advisor)
- Dr Martin Dunbar (MD) Pain Concern (3rd sector rep)
- Mary Loudon (ML) (Patient Reference Group representative)
- Nicola Rhind (NR) NHS Grampian (Chronic Pain Lead Clinician)
- Professor Paul Cameron (PC) NHS Fife (CMO Speciality Adviser)
- Dr Rachel Atherton (RA) Scottish National Residential Pain Management Prog.
- Sonia Cottom (SC) Pain Association Scotland (3rd sector rep)
Secretariat
- James O'Malley (JOM) Scottish Government (Policy Lead, Chronic Pain)
- Sharon Robertson (SR) Scottish Government (minutes)
Observers
-
Germaine Vonhof (GV) Scottish Government (Mental Health policy)
- Rebecca Dey (RD) Scottish Government (Mental Health policy)
- Rhona Millar (RM) the Health and Social Care Alliance
Apologies
- Prof. Lesley Colvin
- Irene Oldfather
- Fiona Robinson
- June Greenhorn
- Liz Barrie
Items and actions
Introductions
JH advised that discussion should focus on agenda items and any additional points raised would be noted and answered outwith the meeting.
JH welcomed the following new members to the Committee:
- Carla Kaspar, representing a new organisation on the Committee, the Friends of the Centre for Integrative Care in Glasgow
- Dr Martin Dunbar, Chair of the Board of Trustees representing the charity Pain Concern, and a Clinical Psychologist recently retired from NHSGGC
- Nicola Rhind, newly appointed National Clinical Lead for Chronic Pain
JH thanked Professor Blair Smith for his time as Lead and he will continue in his role as CMO Advisor alongside Dr Paul Cameron.
JH noted that we were joined by the following observers for this meeting:
- Alliance staff to support their work with Patient Reference Group
- Colleagues from the Mental Health policy team in Scottish Government
Chair’s welcome
JH set out as per the last update to the committee, the previous Minister for Public Health was satisfied with the work concluded up to March, including the work to develop the themes captured in the Driver Diagram.
JH stated officials will be meeting with Ms. Todd, the new Minister for Public Health, Women’s Health and Sport, in due course to update her and to confirm ongoing priorities in developing the new Framework for Chronic Pain Service Delivery.
JH explained officials used the pre-election period to reflect on the advice and feedback provided by the NACCP and other stakeholders, as well as reviewing existing data and evidence to identify areas for further development to inform the Framework.
JH thanked group for their ongoing support for the Government’s work.
Update on pain service remobilisation and improvement activity
JH invited SC, NR and the Patient Reference Group to feedback.
NR provided a short update on the state of services in NHS Boards and the actions they are taking to remobilise and improve provision (see separate update presentation).
SC provided an update on the current status of the third-sector (see annex below).
HP and KP provided a short update on behalf of the members of the Patient Reference Group, highlighting a number of concerns about the pace of remobilisation to restart treatments for existing and new patients and indicated that patients would find a timeline from boards helpful. They also highlighted concerns that some Boards are not implementing guidance from the Faculty of Pain Medicine on remobilisation of certain procedures. They also indicated concerns amongst the pain community about reduced access to analgesic medication as services seek to deliver increased self-management support.
JH said clinicians and patients should undertake shared decision making on any treatment decisions that were appropriate for each patient and work will continue with Boards to ensure access to treatment including those which had to be done in a clinical setting continues to be remobilised where safe to do so.
HP/KP stated that while patients are accepting of the use of virtual technologies, face to face learning and engagement will continue to favoured by some. AW clarified that for NHSGGC and probably other Health Boards, services would be provided both virtually and face to face going forward as appropriate.
KP said there should be an increased focus on waiting times for services and how these were being addressed as Boards remobilised. She highlighted the fact that no data still exists to record waiting times for follow up patients She also highlighted research from the University of Dundee that reported higher attendance amongst people with chronic pain in emergency departments settings compared to those without.
NR explained that all Boards are working to improve waiting times and this was the overarching theme of their activities and highlighted the challenges they are facing including accessing clinical space and theatre capacity.
CB added in the chat that realistically reducing waiting times would remain a challenge as a result of the COVID pandemic, and that resources also need to be put into other ways to support patients more immediately including self-management.
JM asked if Boards had seen an increase in referrals as a result of COVID and NR indicated that while this has not specifically reported services are aware that long COVID can have symptoms of fatigue and pain.
CK stated action should be taken to address issues around the continued prevalence of COVID-19 and its impact on pain services. JH stated the new Framework will look to do thing differently as a direct result of seeking to address the waiting times observed both pre- and during- COVID.
Discussion of ideas and actions for consideration to shape new Framework for Chronic Pain Service Delivery
See separate framework presentation for more information.
JH reminded the committee that developing the new Framework continued to be a key priority, and it is intended that we now focus on the ideas and opportunities that the NACCP and other stakeholders have identified to drive forward improvement activity.
JH and JOM provided a brief reminder of the work carried out to date, and proposed next steps which are subject to Ministerial approval.
Discussion focused on the four priority areas which the NACCP and other stakeholders had been invited to provide feedback and comment on in advance:
- Improving access to support
- Improving treatment planning and decision making
- Improving understanding and information
- Improving access to self-management
HP called for consideration around how chronic pain service standards could be set as a national requirement which also allowed for local flexibility if required. ML similarly highlighted work undertaken in relation to paediatric diabetic services to ensure a seamless approach across Scotland as a potential model to emulate for chronic pain. JH reflected that the new Framework is seeking to deliver a ‘Once for Scotland’ approach if possible for pain services.
EM highlighted a number of MPPP projects were underway (see previous meeting in February) looking at primary and secondary interface and they are hoping to share learning from these soon.
ADB felt the actions identified were all a priority and realistic. She stated a need to reset the relationship around self-management with IJBs as this has been lost during the setting up of these Boards. She said there were opportunities to ensure support and implementation for new pathways to triage and mange waiting lists. For example, Versus Arthritis are working with trauma and orthopaedic policy and service teams on new pathways for joint replacement waiting lists. She also highlighted challenges in relation to digital inclusion and ensuring those in remote and rural areas were not left behind.
CH said other clinical specialities have utilised specialist nurses in their services to provide triage support and to deliver care. She also suggested there was a need for people with chronic pain to have some form of self-referral as part of their pathway. In the chat CK agreed that self-referral is part of delivering self-management for chronic pain. She also highlighted the role of the CIC in providing resources to support people with chronic pain who are awaiting treatment.
KD said an overarching theme is ensuring earlier access and support so there can be more effective care at an earlier point in the patient’s journey and more effective rehabilitation. He indicated the MPPP projects are taking different approaches but are all focused on building the capacity to manage pain in primary care, and this is underpinned by the new GP contract, more effective team working and strengthening the interface between primary and secondary care. MD agreed that primary care requires help in order to improve support for people with chronic pain and this includes multidisciplinary team (MDT) working.
KP said she was involved with development of the SIGN guidelines and the recommendation of acupuncture as part of treatment for chronic low back pain and osteoarthritis and that more work was needed to ensure connections between GP practices and practitioners of complementary therapies to increase referral options. A number of comments in the chat agreed with a need to improve access to complementary treatments.
NR agreed with the points raised and that in most boards it was now a standard approach that nurses and Allied Health Professionals (AHPs) provide non-medical assessments as part of pain services. The update reports provided by Boards also set out these pathways as part of the improvement activity underway.
In relation to opportunities to improve treatment planning and decision making, HP said there was an opportunity to improve access to support, treatment and evidence by using resources that already exist, including NHS Inform. He suggested a joint approach to developing this, or other national platforms would be useful to ensure clinical and patient-facing information was in one, easily accessible place. HP suggested that a NACCP meeting be devoted to NHS Inform as this is a key part of the Committee’s own remit.
In the chat EM highlighted that work was underway to update some of the NHS Inform resources and one of the MPPP projects is seeking to develop patient videos that could be used on this platform and BS reminded the group of a previous national website for chronic pain information that is no longer in use. JH agreed NHS Inform has proven a useful platform during the COVID-19 pandemic to provide information and support.
MD stated he supported all teams and clinicians having access to the same information as this would support referral decisions and dialogue between Level 3 and Level 2 services. He also commented that in relation to opportunities for peer-led support, NHS Greater Glasgow and Clyde (NHSGGC) had implemented this model and while it could provide fantastic support, it requires provision from specialists to support this role.
BS stated the importance of collecting data across services in order to compare different approaches to pain management and understand what improvements could be made. The Core Minimum Dataset (CMD) is validated for use in pain services to support this process.
NR agreed there is a need to have a national information resource and there are challenges to accessing and updating NHS Inform at present. She also said the British Pain Society are carrying out research on what information people look for and what improvements could be made. On the CMD she said this will be considered as part of work on digital pathways to address remote and rural access to pain services taking place in NHS Highland and Grampian.
KD agreed there has to be consistency in all messages on chronic pain and that NHS Lanarkshire have trialled the use of videos to support a Realistic Medicine approach to patient information.
The Committee discussed the opportunities to improve understanding and information on chronic pain, and there was broad agreement that a national public health campaign should be a priority. In the chat points were raised around ensuring any campaign addressed health inequalities including the overlap between chronic pain and deprivation and what data might be available to shape activities.
In the chat EM highlighted that NHS Ayrshire and Arran are planning to run a ‘Flippin’ Pain’ event which focuses on public health messages and involves individuals with lived experience. They intend to advertise this online event nationally and will share details in due course.
ADB stated that peer-led support is important and there are many good examples of best practice. She highlighted Versus Arthritis’ work in paediatric clinics alongside clinicians to ensure young people’s needs are addressed holistically. She also agreed with the need for a public health campaign to raise awareness, ensure awareness in the wider public about pain and its impact, its causes and what individuals can do to self-manage its impact.
KP asked if there was need for a centre of excellence to provide an opportunity for patients and clinicians to come together to discuss chronic pain. JH agreed there were opportunities for both groups to learn from each other. MD and AW spoke about the annual patient conference for ‘graduates’ of NHSGGC’s pain management programme (PMP) which supports peer-led learning and engagement with services.
JM stated that chronic pain is rarely experienced in isolation and has links to other long-term conditions, so this must be part of any campaign. She highlighted the CIC and Dumfries House are engaging with Scottish Government around an event in October for the public and professionals to raise awareness.
Next steps
JH thanked the group for their input into the discussion and reiterated that the next step would be to meet with the new Minister to ensure clarity on direction of travel and timelines. He highlighted there would continue to be opportunities to engage in the work to develop the Framework going forward.
Date of next meeting
Date will be identified following meeting with the minister.
Annex
NACCP – Third Sector feedback
Representatives for the third sector organisations serving on the NACCP have come together to provide some joint feedback based on their knowledge and experience of service delivery and support for those burdened with chronic pain during the pandemic.
Indeed whilst the journey has often been challenging, it has provided many learning opportunities as to what is working well along with some identified visible gaps where improvements need to be made nationally in supporting those with chronic pain lead a better quality of life.
Impact of covid-19 on people with chronic pain
What has worked well
The pandemic has been a great leveller for those living with chronic pain. More time and space to do things due to imposed limitations reduced the external pressures such as commuting to work or partaking in social engagements. It has therefore helped reduced the stigma often associated with chronic pain and helped other to experience the isolation that many sufferers experience.
People have been very appreciative of services being on-line and willing to engage. However, this does raise the issue of the many difficulties of being able to access this either through lack of digital equipment, knowledge or connectivity. There is therefore a need to ensure digital equality going forward.
People have been more open to embrace self-management due to lack of access to statutory services - a refreshing change when previously this has been seen as a last resort.
What hasn’t worked so well/what needs to be improved
Social isolation experienced
Lack of opportunity for exercise – closure of sports services
It clearly highlighted those who were managed in a dominated medical model were often left without any support. Also the difficulty in accessing GPs for emergency appointments when experiencing pain flare-ups.
Improving access to services
What has worked well
Benefit of digital access for those who would otherwise never have been able to access our services. Examples of this is the reduction in DNA and UTA at sessions – digital service provision has enabled people to support and education who would otherwise have been denied this due to work commitments or inability to travel due to their condition. However, it is interesting that results from recent service user questionnaire showed that the majority of people wanted a blended service model so that it provided them with choice of either face-to-face or digital.
What hasn’t worked so well/what needs to be improved:-
People often reported feeling ignored and left without any lifeline with their cancelled appointments when many services were suspended during the pandemic.
Lack of equity of service – if you look at women as an example who are more likely to have chronic pain than men of the same age. Women also report more high impact pain than men. Chronic pain is more common among women regardless of where the pain is felt issue especially around domestic violence.
Issue of digital inclusion – not everyone who needed access to on-line support could get this. A further example of this from a third sector perspective, is the inadequacy of systems. The telephony system used by Pain Concern was not suitable for a switch in service delivery. Whilst a Government grant was used to help address this, further delays were experienced due to the co-ordinating of logistics.
Difficulty of signposting – variation of access. Questions such as are they open? Are they in every area? This has been an on-going conversation for many years now. It would therefore be beneficial to have one Scotland-wide service for this.
Link workers play a key role for supporting those with chronic pain and helping them navigate the system, especially in some of more deprived areas. However, we need to highlight these more rather than encouraging people to access their GP or HCP.
On-line service delivery, unless properly managed can often be viewed as a more didactic approach. It is therefore important to ensure that opportunity is provided for the all-important peer support and interaction. This means being focused often on how you redesign on-line delivery.
Third sector funding is paramount for key service delivery and support. Failure of this results in people being failed for a second, third time if such services need to be withdrawn.
The right treatment at the right time
What has worked well
It has been good to see some Health Boards take it upon themselves to look at alternatives for people unable to access chronic pain clinics – eg. Ayrshire & Arran who put together a presentation for people to access addressing the various things which would be usually be discussed at a first appointment. The programme very much focused on looking at looking at alternative approaches. If learning can be taken from this and it be further adapted as a Scotland-wide approach, this could potentially have the ability to reduce Secondary Care pain clinic appointments. NHS Grampian also adopted the “Near Me” video conference system and this has continued to be used for chronic pain patients.
What hasn’t worked so well/what needs to be improved
Pain is a key part of people’s experience, but it’s just one of many components.
Fatigue, mobility, dexterity, feeling low and feeling anxious all play a role – and people who are struggling experience all of these aspects more acutely. People with chronic pain are often likely to have a range of other conditions – and their biggest unmet need overall is around conditions being treated separately, rather than them as a whole person.
For those patients who had been receiving injections/regular interventions, nothing was being offered to replace the lack of access to this and many were left not able to cope. Does this therefore highlight the dependence on medical treatments?
There is a need for a more holistic approach as an option for people at the very beginning of their care.
Medics are increasingly cautions about prescribing pain medication and there is much focus around de-prescribing. However, for this to be effective and taken on board, it needs to be replaced this with something such as a care/support package for education/self-management.
Everybody’s experience of chronic pain is unique, and not everyone requires or benefits from the exact same type of treatment. Clinicians should ensure people with chronic pain both understand and are involved in agreeing what treatment or support is likely to be the most beneficial. This type of shared decision making is further supported by guidelines and clinical advice based on evidence from research studies.
We know there are differences in the treatment available between Health Boards in Scotland, and work is needed to ensure everyone can access evidenced-based support to help manage their pain and improve their quality of life. This will include making sure people are referred to the right services at the right time and that clinicians and patients understand and agree when a treatment might be started or stopped.
The issue around mental health needs to be recognised. With all the publicity and focus around this, very little is mentioned about chronic pain being associated with suicide deaths.
Supporting people to get the help they need, when they need it.
What has worked well
The key drivers for change around self-management featured as part of the new framework are welcome at the forefront of this model.
What hasn’t worked so well/what needs to be improved
Chronic pain must be seen as a public health problem, potentially impacting on quality of life, independence and income. Like other public health problems, chronic pain is associated with deprivation. There are other groups in society who bear an unequal burden of symptoms, including some minority ethnic groups, and women. Any comprehensive approach across the course of people’s lives to address chronic pain and its impact on individual people must engage with a complex set of factors – including deprivation and socioeconomic status – as well as other wider determinants of health.
We urge the Government to identify how they are going to tackle the technological inequality highlighted earlier.
There is little support and understanding around the anxiety of getting back to a new “normal” and how it once again opens up the issue of stigma and lack of understanding.
Education – a national awareness piece is needed. We acknowledge that this had been tabled a number of years ago but continued to be postponed due to other conditions with a higher priority. With an increase in younger people reporting chronic pain, this will inevitably have a high impact on services in years to come. It is important that the new framework considers the wider impact of this along with further highlighting the SIGN 136 Guideline – there are still many HCPs who are not aware of this.
Helping people to help themselves
What has worked well
Good understanding of self-management in Scotland but many services not accessible everywhere
What hasn’t worked so well/what needs to be improved
The general public often don’t understand the concept of self-management. An awareness package is needed around the fact that there is no magic bullet and it’s not a question of one or the other.
We need to stop self-management being seen as a last resort rather than the care and treatment plan. Self-management is part of the package and is empowerment rather than abandonment (which self-management has often been interpreted as).
GPs and physios need help moving people to a coping aspect rather than the focus being around managing to take people off of medication. We need to respect the fact that for some people the medication is making a huge difference to their daily living and we need to question the ethics of removing this if there is no risk.
We need a key message around the importance of physical activity and exercise, whilst also tackling barriers of access to this especially if people feel they are not being listened to and their pain is not real
There is a problem
Thanks for your feedback