The Provision of Specialist Residential Chronic Pain Services in Scotland: Analysis of Consultation Responses

Section 5: Other Issues Raised

5.1 Question 11 gave respondents the opportunity to add any further comments. For reference, the question is set out below:

Question 11: If you wish to add any further comments on issues raised in the consultation paper or current chronic pain services in Scotland, please use the comments box below.

5.2 Over half of respondents to the written consultation (55%) made additional comments here. Some provided additional information outwith the specific questions, and relevant comments were made by participants in all of the stakeholder meetings.

5.3 Some of these further comments related to issues explored at previous questions. These have been presented at the relevant points to avoid duplication. Similarly, some comments made at other questions were more relevant here, and are included below.

The current context and nature of services

5.4 A large number of respondents made comments on the current context and the nature of services.

The nature of chronic pain

5.5 Several respondents commented on the nature of chronic pain. Some, for example, focused on defining this, while others identified the impact of chronic pain on their lives. Among specific issues raised were the nature of chronic pain as a long term condition in its own right, and its association with many other long term conditions.

5.6 In terms of the impact of chronic pain, it was indicated that it is debilitating and life-limiting, as well as causing distress, discomfort and a reduction in individuals' quality of life. Examples were provided of respondents' personal experiences, or those of family members. Comments were also made about the difference that can be made to patients when their pain is addressed effectively.

5.7 Comments were also made on the widespread nature of chronic pain and its prevalence among children and adults. The importance of addressing the needs of individuals affected was also raised. A few respondents stated specifically that they welcomed the introduction of a specialist residential chronic pain service in Scotland.

The likely level of demand or need for provision

5.8 Several respondents made comments on the demand for a service in Scotland. Some of these focused on the general need for such provision, to address the issues identified above. Others made comments on the estimated demand. Comments were varied, and included the view that the likely demand for such a service is currently unclear, or that there are conflicting views of this.

5.9 A few respondents stated that there is currently a relatively small number of patients from Scotland who travel to Bath. It was also suggested in one of the stakeholder meetings that improving level 1 and 2 services could reduce the number of people requiring to use a level 3 service.

5.10 Some respondents expressed the view that the level of demand may be higher than expected, or that the number of patients that would be referred to a service in Scotland had been underestimated. It was argued that there may be more demand than indicated by the usage of Bath, and that the number attending Bath is a small proportion of those in Scotland who would be likely to benefit from a specialist residential programme.

Problems with current service provision

5.11 Many respondents (including participants in stakeholder meetings) made comments on current provision, a number of which focused on highlighting problems.

5.12 Some of these related to current service provision overall, and included the view that this is generally poor. It was also suggested that there is disparity of chronic pain services between different areas, with patchy provision, fragmentation and variability in the range of services and resources offered. A few respondents commented on specific problems for those in remote and rural areas.

5.13 Respondents also suggested that there can be a lack of understanding of chronic pain and the services available on the part of some GPs (and others, including the wider public), and a lack of referral (as noted at 3.27).

5.14 It was also argued that there can be long waiting times for accurate diagnosis and treatment, and that chronic pain may be treated as an acute, rather than a chronic illness. It was also suggested that services may not have adequate staffing levels and can be bureaucratic. One respondent expressed concern about competing agendas, with the patient being forgotten.

5.15 Problems were also highlighted with specific aspects of current provision. For example, some respondents identified limitations of the service in Bath (including some barriers identified in paragraphs 3.60 - 3.66). A few respondents cited problems with services in particular areas, or types of services (such as pain clinics and specific courses or groups).

5.16 Comments were also made on the use of medication (e.g. the reliance on pain killing drugs) and on difficulties in accessing particular forms of treatment, or support for specific conditions.

Positive aspects of current provision, progress and developments

5.17 Although fewer comments were made on positive aspects of current provision, several respondents identified these. A number, for example, made reference to the value of the service provided by the Centre for Integrative Care at the Glasgow Homeopathic Hospital in the Gartnavel complex. Comments included details of the nature and means of provision, examples of the beneficial impact, and concerns about the future of the provision. Positive comments were also made about the service in Bath, and other specific facilities, staff and treatments.

5.18 A few respondents made positive comments about overall developments. Some of these focused on the development of specialist residential chronic pain services in Scotland, the improvement of existing day services, and general work to improve chronic pain services across Scotland.

The consultation

5.19 Many respondents (including the stakeholder events) made comments on the consultation itself.

The consultation overall

5.20 In terms of the consultation overall, some respondents generally welcomed or supported this. Comments were also made on who should be included in the consultation; and the timing of this (with the hope expressed that it would not take too long).

5.21 One respondent stated that, while the focus of the consultation was on residential services, it is important to bear in mind those for whom the specialised services are unlikely to be relevant or available. Another stated that there was some cynicism that the decision about the way forward would reflect what was best for healthcare professionals, rather than people affected by chronic pain.

5.22 It was suggested at one of the stakeholder meetings that the Scottish Government should consider a follow-up meeting after the consultation to discuss future plans and maintain engagement in relation to the development and design of the service.

The consultation processes

5.23 Some comments were made on the written consultation. These included comments on the nature of the material provided and the means of responding (e.g. individual difficulties with this).

5.24 Comments were also made about the issues covered in the consultation document, and some perceived gaps in this. For example, a few respondents stated that there were no details of the cost implications of the options, the funding arrangements, nor the likely level of use. One respondent stated that the document did not provide a business case to demonstrate that a change from the status quo would provide value for money, and it was suggested that the status quo should have been included as an option.

5.25 Other issues raised included that the document did not include:

• A review of the evidence base comparing outcome data for the residential and outpatient approach to the delivery of specialist chronic pain services.
• Mention of the physical inpatient facilities and supervision needed in time periods outwith the programme.
• Details of whether the service was only for adult patients, and the arrangements for adolescents and children.

5.26 Comments relating to the stakeholder meetings focused largely on describing the nature and purpose of these (i.e. to help clarify views as part of the consultation on the development of specialist intensive chronic pain service in Scotland). A few suggestions were made about the location of such meetings in the future. One respondent provided positive feedback about the nature of the sessions.

Questions and issues for clarification

5.27 A small number of questions and issues for clarification were raised, relating to:

• The conditions that would be covered by the service.
• The referral processes.
• Staffing.
• Provision in particular areas and to specific groups.
• Other aspects of the options presented in the consultation document.
• Funding and costs.
• The evidence available.

The role and nature of respondents

5.28 Many respondents made comments about their own role and the nature of their interest in chronic pain, or the type of work they (or their organisation) was involved in. Information was also provided about:

• Those whose views were represented by a particular response.
• The nature of the response (and any limitations to the material).
• How the response was developed.
• How to contact the respondent.

5.29 One respondent endorsed a response from one of their member organisations.

The way forward

5.30 Many comments were made about the way forward in the development and delivery of specialist residential chronic pain services in Scotland.

Strategic and overall issues

5.31 A common theme was the identification of strategic and overall issues, including the principles and overall approach to service provision seen to be required.

5.32 Some of the principles identified related to the approach to patients. These included, for example the need to:

• Take a patient-centred approach.
• Treat them with dignity and respect.
• Recognise and address their chronic pain.
• Take a positive attitude to chronic pain.
• Treat them as individuals.
• Provide appropriate (and age-appropriate) care.
• Identify the way forward.

5.33 The importance of user involvement in the development and implementation of the service at all stages was also highlighted (including the involvement of specific groups of service users, such as deaf people and children and young people).

5.34 Some of the principles identified related to the approach to chronic pain, and these included, for example, that the service should:

• Provide support and education and encourage self-management.
• Treat chronic pain as a chronic illness.
• Take a more "social" and less "biological" approach.
• Provide a relaxed environment.

5.35 Some principles were highlighted relating to the overall approach to service provision, and suggestions included that it should involve provision that is:

• Integrated.
• Streamlined.
• Holistic.
• Based on early intervention.
• Flexible.

5.36 Some principles related to the wider context for the service, including that it should:

• Give the issue priority.
• Take a "grassroots" approach (with more support for levels one and two).
• Be evidence-based.

5.37 One respondent stated that service development should be part of an overall strategy for pain management, and another that there should be a vision for growth and development. It was also suggested that the service should be developed in line with the Scottish Service Model for Chronic Pain and that this should be implemented in each NHS board.

The overall organisation and pattern of provision

5.38 Many comments were made on the overall organisation of the service and pattern of provision. Among these, a common theme was the need for improvement and development of local services (as discussed in Section 2). It was argued that there would be a continuing need for local chronic pain service provision, whatever the option adopted. It was stated that, for some patients, local services would be their only access to treatment and support, and should be protected.

5.39 It was also stated that it is important that there is access to effective pain services across Scotland for all of those who need them, not only those who are worst affected. A few respondents argued, in this context, that there should be clear pathways for individuals.

5.40 Suggested developments included:

• The development of primary care services.
• The provision of support to local practitioners.
• A continuing focus on self-care.
• Early access to appropriate advice.
• Reduced waiting times.
• Appropriate referrals.
• Ongoing development of children's pain services at a local level.
• NHS Board implementation of the Scottish Service Model for Chronic Pain.

5.41 It was also suggested that there should be local pain teams and clinics in all areas and Managed Clinical Networks across Scotland. Additional suggestions included that service provision should include other elements, such as telehealth and outreach or mobile provision. A few respondents suggested that additional services could be developed and piloted at later stages, as required.

5.42 Suggestions were also made about the involvement of particular organisations and types of staff in the delivery of the service. Some of these reflected suggestions made in Section 4 about the types of treatment and therapies that should be provided. Other suggestions reflected the perceived need for the development of services overall. These included, for example:

• The involvement of condition-specific specialists.
• Specialist pain management nurses.
• Local clinicians including the primary care team and local secondary care pain service.
• Existing chronic pain service staff.

5.43 One respondent stated that there should be a lead clinician to deal with patients after discharge. Another argued that there should be a named professional to co-ordinate a person's care. A few respondents stated that there may be a role for a National Co-ordinator, to ensure that patient choice is respected within chronic pain services.

5.44 A further element of the overall organisation of provision was the perceived need for a specialist service to develop links to other services. Among those suggested were links to other clinicians and local services. It was also argued that there should be links to university departments (such as medical schools and health schools). One respondent suggested links to international higher education institutions.

5.45 It was argued in one stakeholder meeting that there should be links to existing specialist services such as: palliative care services generally; the Children's Hospice Association Scotland (CHAS); and Marie Curie Cancer Care. One respondent suggested a "collegiate" approach to assessment.

5.46 Other suggested links included with:

• Other Third Sector organisations (e.g. the Pain Association and individual medical charities).
• Vocational rehabilitation, employment services and adult education.
• Other local statutory organisations.
• Other services in the community more generally.
• Bath (e.g. for staff training, learning from the model, and using resources).

5.47 One respondent suggested a central database of allied healthcare professionals who have been properly trained in chronic pain and are contracted to make domiciliary visits.

5.48 Some respondents stressed the multidisciplinary nature of chronic pain service provision and the need for a stable and cohesive multidisciplinary team. It was also argued that the staff team should be self-motivated, high calibre and experienced.

5.49 Suggestions were also made relating to some management and practical issues. One respondent, for example, argued that the service needs to be provided nationally, in order to ensure equity of provision. This issue was also raised in relation to funding. One of the stakeholder meeting participants argued that the service needs to operate without area influence.

5.50 Some respondents argued that there is a need for multidisciplinary management and / or joint working. One stated that there should be a strong medical lead. The importance of communication and feedback were also identified. One respondent argued that there would be a need for more accurate reporting of patients' responses to treatment from a residential service to professionals providing continuing care.

5.51 Additional specific suggestions about management and practical issues included:

• The establishment and effective operation of Managed Clinical Networks (MCNs) and Service Improvement Groups (SIGs).
• The establishment of an integrated mechanism for communicating about chronic pain, acknowledging the multi-dimensional nature of this.

5.52 It was also suggested that there should be clear and consistent criteria for use of the service, and clarity about specific aspects of the service (e.g. carer attendance). One respondent argued that there should be clear protocols for all aspects of provision prior to the start of any programme.

Staff education and training

5.53 A further common issue was the perceived need for staff education and training. Some respondents mentioned specific groups for which training should be provided. Suggestions included:

• Medical and other relevant students.
• "Frontline" primary care and ancillary staff.
• GPs and local pain clinicians.
• Physiotherapists.
• Pharmacists.
• General health and mental health staff.
• Wider staff groups.

5.54 Some respondents suggested specific issues for training, such as:

• The nature of chronic pain and different types of chronic pain.
• Diagnosis of particular conditions.
• Alternatives to pain killing drugs.
• Treatments for chronic pain.
• The nature of services available.

5.55 Other suggestions included that training should be part of the remit of a Centre of Excellence, and that it could create a revenue stream. One respondent argued that training delivery should involve those providing specialist health services (e.g. palliative and end of life care). A few suggested that patients should be involved in the provision of education to healthcare staff.

5.56 Suggestions were also made about the means of provision of education and training. These included, for example, the use of:

• Continuing Professional Development (CPD).
• Secondment or rotation from existing services to an intensive service.
• Shadowing.
• Clinical guidelines (although one respondent noted that guidelines may not be read by a busy GP).

5.57 It was suggested in one of the stakeholder meetings that the Patient Opinion website is a good way to inform services of good and bad experiences. It was also suggested that best practice should be collected and disseminated.

5.58 Some additional suggestions were made about wider awareness raising. One respondent argued that there is a need to share knowledge and experience on a national level. Another suggested using the experience of other countries. A further respondent stated that it would be useful to undertake education and awareness raising with employers, teachers and the wider public, to develop greater understanding and support for people experiencing chronic pain.

5.59 It was also suggested in one of the stakeholder meetings that there could be a Chronic Pain Symposium, podcast to the wider community.

Location of the service

5.60 A number of comments were made about the possible location of a Centre of Excellence. Some of these were general comments about the overall type of location. Other respondents mentioned a specific hospital or facility. Comments on the type of location included that it should have good transport links (including to remote areas), parking and be accessible to all areas.

5.61 Some respondents suggested a particular city or geographical area, with suggestions including: Glasgow; Perth; Stirling; Dundee; generally in the central belt; or at north and south locations.

5.62 In terms of the identification of a specific hospital or facility, several respondents suggested establishing a Centre of Excellence at the Centre for Integrative Care (in the Glasgow Homeopathic Hospital). Other suggestions included: the Southern General Hospital in Glasgow; the Astley Ainslie Hospital in Edinburgh; and St John's Hospital in Livingston.

5.63 One respondent argued generally that a Centre should be co-located, or the staff co-employed within a local or regional centre offering pain management to the local population.

History and timing

5.64 Several respondents made comments on the history and timing of service development. Some argued that there has been lengthy debate and discussion involving a number of groups and meetings. A few respondents were critical of the nature of the previous process, or expressed concern at the length of time taken. A few highlighted the current opportunity and recent progress, or expressed a hope for a positive outcome and the overall improvement of services.

5.65 Some respondents argued that there is a need to finalise the details of the service, and to implement it as soon as possible. One stated that there is a need for strong leadership to take this forward.

Funding and resource issues

5.66 Comments were also made about funding and resources. For example, some highlighted the general requirement for funding provision as an essential element of the way forward. A few stated that there is a need for dedicated funding, and it was argued in one of the stakeholder meetings and by other respondents that there should be guaranteed ring-fenced funding.

5.67 One respondent argued that national ring-fenced funding is important to avoid possible inequity of care and access to the service. Another argued that national funding is needed to ensure stability and continuity of care (and to avoid threat of closure by a local health board). It was also stated that funding arrangements should be equitable.

5.68 It was argued that there should be funding and investment to support training, recruitment and development of staff. A few respondents commented on the need for facilities and staff resources to match the quality of the provision in Bath. One respondent argued that staff need dedicated roles, protected time and support to provide intensive services.

5.69 One respondent argued that the cost savings of not sending patients to Bath should be added to the chronic pain treatment budget in Scotland. Another proposed a basis for charging to NHS Boards (on a cost-per-case basis).

5.70 One respondent stated that relevant charities providing services and support also require improved funding to provide more facilities in the community.

Evidence base

5.71 Some additional suggestions were made about the evidence base for service provision, and the perceived importance of this.

5.72 In terms of the use of current material, for example, one respondent suggested a particular report^[9] which could be applied to the development of a chronic pain service in Scotland. It was also suggested that international research findings and the experience of existing services could inform service development.

5.73 A few respondents suggested that research should be carried out to inform the development of the service, with suggestions including research:

• To examine the relative efficacy of the different potential approaches to service provision or relative value for money.
• To analyse evidence from other areas of healthcare on the use of specialist centres and the impact on local services and workforce migration.

5.74 One respondent stated that the outcome of the new Service Improvement Groups should be awaited, to assess the impacts or improvements they propose, prior to decision making. Another argued that the work of these groups may influence future assessment of ongoing need for residential pain programmes and how they could be delivered.

5.75 A few respondents questioned the current basis of the proposals, or the difficulty of decision making in the absence of data about the specific level of need. One stated that the decision should be made in the best interests of those affected by chronic pain, using figures independently audited and verified and available to public scrutiny.

5.76 It was also argued that there is a need to measure the effectiveness (including cost-effectiveness) of the service. It was suggested that there should be evaluation, monitoring and review of provision (including the medium to long term impact on patients and the wider socio-economic and full service impacts). One respondent stated that they would welcome Government feedback on how a specialist Scottish chronic pain service would be evaluated.

5.77 Specific suggestions relating to developing the evidence base included:

• A scoping exercise to discuss key components of, and problems with current programmes in England.
• A standard, real-time, patient-related quantitative and qualitative tool.
• A chronic pain coding, with figures to be made available regularly.
• A UK national network to share and learn from outcome experiences.
• A review of waiting times and referrals.
• Ongoing measurement of the model against pre-determined, clear and measurable objectives (e.g. annual review of the model and outcomes).

5.78 One respondent argued that, if the system established does not get results which are similar to, or better than current leaders in this area, it should be possible to revert to the current system.

Overview

5.79 The consultation identified three options. Of these, there was a clear preference for Option 1 (a Centre of Excellence in a single location), in some cases in conjunction with another option. A significant number of benefits, as well as a few disadvantages, were suggested for Option 1. Most respondents supported the provision of a wide range of services in such a Centre of Excellence.

5.80 Option 3, however, was identified most often by respondents as one they disagreed with. Nearly half of those who expressed a view suggested that access to the residential service at Bath should be retained either on the same basis as at present, or in a modified form.

5.81 Respondents identified a wide range of barriers to accessing a residential pain management service, including cost, location, logistical and personal issues.