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

Section 4: Components of Service Provision

4.1 This section presents the findings on the questions relating to components of service provision (covering Questions 6 and 7 in the consultation document).

Overall views of aspects of a service for inclusion

4.2 Question 6 contained a closed question which asked respondents to select (using tick boxes) from a list of aspects of residential pain management services which they considered should be included in a Scottish service. For reference, the question is set out below:

Question 6: Please choose from the list below which aspects of residential pain management services should be included in a Scottish service (choose as many as apply)

A chronic pain assessment

Supported one to one sessions to teach coping skills

Group sessions

Residential accommodation

Opportunity for immediate carer/support provider to accompany patient

Peer support

Tailored exercise programme

Medication assessment

Other (please tell us in the comments box below)

4.3 A total of 201 respondents to the written consultation (88%) addressed the tick box element of Question 6. Of these, the percentages indicating the need for particular elements of provision were as follows:

Table 3. Aspects of residential pain management services to be included

Aspect of service	No.	%[7]
A chronic pain assessment	195	97
Supported one to one sessions to teach coping skills	182	91
Residential accommodation	183	91
Medication assessment	182	91
Tailored exercise programme	174	87
Group sessions	168	84
Opportunity for immediate carer / support provider to accompany patient	168	84
Peer support	157	78

4.4 As can be seen from the table, there was strong support for each element of provision to be included in a Scottish service. More than half of the respondents who addressed the question ticked all of the boxes.

4.5 Respondents also had the opportunity to make additional suggestions. More than half of written respondents (52%), and most stakeholder meetings made comments on aspects of provision for inclusion in a service in Scotland. Relevant comments were also made at other points in responses, and are included below. Most of the comments focused on additional suggestions, although many made further comments on those in the list provided.

4.6 Some respondents made comments on other issues. A few stated, for example, that they agreed with the elements of services suggested in the document, or that there was a general need for more provision. One commented on the potential cost. A very small number expressed disagreement with the overall residential nature of the proposed service. One stated that all of the elements mentioned should be part of non-residential provision wherever possible.

4.7 Some respondents made additional comments about aspects of current service provision, the consultation or the way forward, and these are considered in Section 5.

Additional comments on the elements of provision listed at Question 6

4.8 Just over a third of the additional comments on issues for inclusion focused on the elements of provision in the list at Question 6.

A chronic pain assessment

4.9 As seen in Table 3, almost all respondents who addressed this question believed that "a chronic pain assessment" should be included in a Scottish service.

4.10 Additional comments focused largely on the general need for this, or the nature of provision. It was suggested that this should include:

• A functional assessment.
• A full 24 hour assessment.
• A mobility assessment.
• A general holistic assessment to consider the impact of the pain on the person's life and family.

4.11 One respondent stated that, as part of the initial chronic pain assessment, there should be a targeted information session to manage patient expectations.

4.12 A very small number of respondents raised issues about the inclusion of a chronic pain assessment. One suggested, for example, that a chronic pain assessment would be largely uninformative when patients reach this stage. A very small number stated that it was needed before sending patients to a centre.

Supported one to one sessions

4.13 Table 3 also shows a high level of support for "supported one to one sessions" with 91% of those who addressed the question being in favour of their inclusion.

4.14 Very few additional comments were made, but it was suggested that these sessions could be carried out prior to group sessions. One respondent stated that some aspects of discussion must take place away from carers (i.e. one to one) and another stated that there should be an opportunity for patients and carers to take part (individually or together), in group work and individual sessions.

Residential accommodation

4.15 The inclusion of "residential accommodation" was also supported by a very large proportion of those who addressed Question 6. This was one of the most common elements of provision on which additional comments were made, and most of these focused on the nature of provision.

4.16 These included comments on the general need for residential provision in Scotland. Suggestions were also made about the type of accommodation that could be used (e.g. a nearby hotel; bed and breakfast; self-catering flats). One respondent suggested that there could perhaps be a pricing agreement with a local hotel to obtain good rates for patients' accommodation.

4.17 It was also suggested that the accommodation should be fully accessible to disabled people, with appropriate facilities (including IT), and one respondent argued that it should be in a non-clinical environment.

4.18 Other aspects of accommodation suggested were that it should be:

• Short term.
• Close to the point of service delivery.
• Private (although with opportunities for group activities).
• Available to carers and family members.
• Available over the weekend.

4.19 One respondent stated that there should be a mix of types of accommodation.

4.20 A very small number of respondents stated that they did not support the need for a residential service.

Medication assessment

4.21 Table 3 indicates a high level of support for the inclusion of a "medication assessment" (91% of those who addressed Question 6).

4.22 Few additional comments were made about this, but these included the general need for provision. Specific suggestions included that recommendation should only be made after consultation and in collaboration with a patient's usual GP. It was also suggested that alternative medication, or non-medication therapies should be considered alongside "traditional". One respondent suggested that a medication assessment could be done using video conferencing.

Tailored exercise programme

4.23 Although there was a high level of support for the inclusion of a "tailored exercise programme" (87% of those who addressed Question 6), few additional comments were made.

4.24 One respondent identified advantages of this in terms of meeting individual requirements and helping pain.

4.25 A few suggested that there could be drawbacks or difficulties, such as that exercise, done wrongly, could be harmful, or that some conditions may be worsened by exercise classes. It was also suggested that some patients did not appreciate such sessions.

4.26 One respondent suggested that the title should be amended to "tailored gentle movement" and another that a programme would need to be fully consensual and take account of the nature of particular conditions. A further suggestion was that consideration should be given to non-repetitive exercises and breathing / relaxing techniques. One respondent stated that a tailored exercise programme could be delivered locally.

Group sessions

4.27 There was a high level of support for the inclusion of "group sessions" (84% of those who addressed Question 6) and several respondents made additional comments on this element of provision.

4.28 Benefits of group sessions were seen to include: enabling individuals to share coping methods; supporting people to manage their chronic pain effectively; and helping individuals realise they are not alone.

4.29 Drawbacks were seen to relate to: personal preferences; variation in individual needs; and potential problems with group dynamics or establishing groups.

4.30 Most of the comments, however, related to suggestions about the nature of group sessions. These included suggestions about particular types of groups (e.g. self-management and self-help; specific courses or approaches) and groups in particular settings (including local provision; accommodation group work therapy). It was also suggested that group work should follow one to one work.

4.31 Further comments included that there should be more information about group provision and that groups should be properly supported and funded. One respondent stated that peer support (such as that provided by the Third Sector) in setting up such groups could be given to those with relevant expertise to run them. Another suggested linking in to services already offered.

Opportunity for immediate carer / support provider to accompany patient

4.32 There was a high level of support for the inclusion of the "opportunity for immediate carer / support provider to accompany patient" (84%). This was one of the most common elements of provision on which additional comments were made.

4.33 In this case, comments tended to focus on general expressions of agreement with this, or the perceived benefits. These were seen to include, for example:

• Enabling the patient to have support to travel.
• Providing an opportunity for the carer / support provider to develop a better understanding of chronic pain, how this is managed, and the nature of support provided to the patient.

4.34 One respondent argued that providing the opportunity for the immediate carer / support provider to accompany a patient would avoid duplication and misunderstanding on the part of the carer / supporter.

4.35 One of the stakeholder meetings suggested that professionals need to see how the individual goes about their daily life and how they interact with their carer. It was also stated that reintegrating back to home life with the carer is easier if the carer is involved in the whole process. Comments were also made about the importance of the carer's role (including in longer term self-management) and the need to recognise this.

4.36 A small number of respondents identified drawbacks of providing the opportunity for the immediate carer / support provider to accompany the patient. The main focus of these comments was on the perceived importance of enabling the patient to cope with less support. It was argued that self-management and peer support may be inhibited for some patients when accompanied by a carer.

4.37 A small number of suggestions were made on the nature of this provision. These included some suggested caveats, such as that the carer / support provider should only accompany the patient in some cases, by exception, or where the patient cannot carry out their day to day functioning without them.

4.38 Comments were also made on their potential role, for example, as supporting the patient or, in the view of one respondent, only if they are not involved in the patient's programme, but are given separate information and support.

Peer support

4.39 As with other elements of provision, there was a high level of support for the inclusion of "peer support" in a Scottish service (from over three quarters of those who addressed Question 6). Several respondents made additional comments, and most focused on the benefits of this.

4.40 The value of other patients' experience and peer-led approaches was identified. A very small number of comments were made about the drawbacks of peer support, particularly the problems of poorly facilitated support.

4.41 A few suggestions were made about the nature of provision. For example, one respondent stated that peer support was best provided on a generic basis to people experiencing pain. One suggested that peer support could continue long after being assessed, using communication media. Another suggested linking in to existing peer support being offered.

Further issues for inclusion

4.42 Almost two thirds of the comments on issues for inclusion in a Scottish service focused on the identification of additional aspects of provision (further to those listed at Question 6).

Treatment and therapies

4.43 The inclusion of particular types of treatment and therapies was one of the most common additional suggestions. Among those identified, several respondents argued that complementary approaches should be included (with a wide range of specific suggestions). It was also stated at one of the stakeholder meetings that there should be access to research-based integrative care.

4.44 It was also suggested that there should be access to specialised medical treatments and medication advice, and that community pharmacies could provide support. It was also argued that there should be access to physiotherapy and occupational therapy input.

4.45 Nutritional information, education and research were also highlighted for inclusion. Other suggestions were for access to: lifestyle advice; alcohol and drug support; and mental health and psychological support (e.g. CBT; anxiety and pain management; self-harm support; counselling; and some specific programmes).

Follow-up and review

4.46 The provision of some longer term input (including monitoring; follow-up assessment and review; and follow-up support) were also suggested frequently. A number of comments focused on the general need for this following completion of a programme.

4.47 Some means of follow-up were also suggested, such as the use of:

• Email.
• Telephone.
• Internet and web-based "top-ups".
• Ongoing sessions.
• A review appointment at the end of treatment.
• General continuing treatment and support for the patient and family.
• A residential weekend.
• Peer groups.

4.48 One stakeholder meeting identified a need for support mechanisms in an individual's local area, and another that there should be an annual recall for a "refresher" session.

Information, advice and other support to patients, carers and family members

4.49 Several respondents suggested a need for other forms of support to patients, carers and family members. A common issue raised was the perceived need for education and information for carers and family members. Some suggested means of undertaking this included:

• Specific sessions for this purpose.
• Family therapy or psychology sessions.
• Support and information services for carers and family members.
• Improved communications with the full family unit.

4.50 It was suggested that information should cover issues such as:

• Pain management.
• How to help patients.
• Financial issues.
• Accessing carer support services.

4.51 The need for information and support to patients themselves was also highlighted. This included information about, and signposting to services in their local communities (including, for example, Third Sector self-management training and peer support, and complementary health interventions).

4.52 The need for advocacy support was also identified, including a strong collective voice at a national and local level, and individual advocacy on a local and wider scale. Details were given of the nature and benefits of independent advocacy and the potential role of this in relation to those experiencing chronic pain.

4.53 It was also suggested that education and employment support and advice could be provided to patients. This included advice and support to return to work, and employability support (e.g. through links to appropriate services). One respondent argued that teaching and learning experiences suitable to a child's needs should be provided during treatment, particularly for those in the midst of exams.

4.54 A further area of advice and support seen to be required for patients related to finance and benefits. One respondent also suggested that there should be specialised and tailor-made assistance and advice with mobility and comfort aids, as well as access to a resource list, or resource lending.

4.55 It was suggested that there should be wider awareness raising about chronic pain, for patients, families and the wider community. One respondent suggested a campaign to raise awareness of pain and that tips on self-management could be displayed in GP surgeries and other settings.

4.56 It was argued that there could be specific education to employers about chronic pain management in the workplace and means of meeting the needs of employees who experience chronic pain. The perceived need for staff education and training is discussed in Section 5.

Services to meet the needs of specific groups

4.57 Comments on the need for a service in Scotland to address the needs of specific groups were also common. Suggestions included, for example:

• People in remote and rural areas, with:
  • Appropriate means of addressing access issues.
  • Services meeting their needs.
• Deaf and deafblind people, with:
  • Full access to appropriate professional registered language and communication support.
  • Accessible residential accommodation and equipment for those who cannot hear.
  • The involvement of service users in service design and planning.
• Children and young people, with:
  • Specialist children's services.
  • Recognition and consideration of the specific requirements of this group (with suggestions about how to do this).
  • A children's rights impact assessment.
  • Appropriate teaching and learning causing minimal disruption to education.
  • Access to self-management groups.
  • Telehealth support accessible to all age groups
  • Acceptable waiting times for adolescent programmes.
• Disabled people, with:
  • A service that is accessible to disabled people.
  • The needs of disabled carers and family members addressed.
  • The specific needs of children and young people with learning disabilities taken into account.
• People with palliative care needs, with:
  • Fast decisions and implementation of care.
  • Guidelines to ensure collaborative working.
  • Access to new medicines and fast appeals.
  • An integrated approach, with effective protocols, procedures and technology.
• Military veterans, with the remit of the new service to include treatment of those returning from active duty.
• People in care homes or using care at home, with the identification of this group among those who could potentially use a Scottish service.
• People historically under-recognised or excluded from provision, with a need to address this, and a lack of clarity of how this will be done.
• People with specific conditions (e.g. ME-CFS; post-polio syndrome; chronic rheumatic disease), with an appropriate range of specific specialist staff involved in provision.

Particular facilities

4.58 A small number of respondents highlighted a need for particular facilities. Suggestions included that these should generally be pleasant and comfortable, and with "healing space" or "breathing space". Specific facilities suggested included:

• Telehealth and videoconferencing facilities.
• A research centre (with comments on how this could be implemented).
• A trauma unit.
• A gym.
• A pool.
• Cooking facilities.
• A jacuzzi.

4.59 One respondent argued that there should be access to a particular piece of equipment. The need for the facilities to be accessible was also identified.

Provision in other settings

4.60 A small number of respondents made comments about the need to include provision in a variety of settings other than a residential centre or hospital. Suggestions included activities in the local community (e.g. eating out, shopping, gym, cinema) and weekends home.

4.61 It was also argued that there should be domiciliary provision, and provision to people in care homes. One respondent suggested the use of houses in communities to run residential programmes. The inclusion of local outreach work (including to clinicians) and the use of local clinics, as well as linking to other local support were also identified.

4.62 Some specific means of providing support in other settings were also suggested. For example, some respondents commented on the use of telehealth. It was suggested that this could have the potential for greater use and would, for example: enable contact with patients and health professionals remotely; improve access to specialists and consultants; and provide advice to local pain services. It was also suggested that work such as screening, links to support groups, and work to maintain progress could be carried out in this way.

4.63 Some respondents, however, expressed reservations about the use of telehealth (and related means of delivery) as noted in Section 2.

4.64 The use of social networking was also suggested as a means of providing support to individuals. Other suggestions included the use of a helpline and DVDs or memory sticks. It was also argued that Bath could be retained as an option.

Planning

4.65 A few respondents made comments about the need to include planning as an element of a Scottish service. One stated, for example, that care planning is an essential part of health care delivery in social care settings. It was also argued that there should be an appointment schedule developed after the first consultation, and one respondent suggested "goal setting" and "pacing".

4.66 It was also suggested that systematic evaluation (pre-, mid- and post-programme) should be undertaken, to identify the effectiveness of the treatment.

Social opportunities

4.67 A few respondents suggested that social opportunities should be included as part of the provision. Specific suggestions included evening social events and the development of support networks between people using a service or in a similar situation (e.g. through online communities, a dedicated website or meeting places).

Research

4.68 Some respondents suggested that a Scottish service should include research (and, as noted, it was suggested that there should be a chronic pain research centre).

4.69 As well as the general need to engage with research, a few suggestions were made about the nature of research which could be undertaken. These included, for example:

• Comprehensive monitoring of outcomes.
• Identification of best practice.
• Research relating to new therapies and techniques (including non-pharmacological interventions).

4.70 It was suggested that this could increase effectiveness of treatments, reduce costs and inform service development at all levels.

Retention of access to the current service provided in Bath (or elsewhere in the UK)

4.71 Question 7 asked respondents about retention of access to the service in Bath (or elsewhere in the UK). For reference, the question is set out below:

Question 7: Irrespective of the final service model selected, should access to the current service provided in Bath (or elsewhere in the UK) be retained for occasional use?

4.72 A total of 205 respondents to the written consultation (90%) expressed a view about the retention of the option of such a referral. Of these, as set out in Table 4 below, nearly half believed that access should be retained. Around a quarter indicated that the option should not be available, and a similar proportion that they did not know.

Table 4: Views of retention of access to the current service provided in Bath (or elsewhere in the UK)

Retain access to Bath	No.	%[8]
Yes	98	48
No	51	25
Don't know	56	27

4.73 Although no space was provided to make additional comments, 19 respondents made comments on perceived benefits and drawbacks of this.

4.74 Among the perceived benefits were the ability to meet the needs of specific individuals or groups (given the variation in individual needs). Comments included that the current service in Bath could be used, for example:

• Where this is the patient's wish.
• If it is the most appropriate choice in a personalised approach.
• If there is a particular specialist service or expertise that could not be provided adequately in Scotland (e.g. because of a small number of patients in a particular group).
• In exceptional circumstances.
• In an emergency.

4.75 One respondent stated that some patients (e.g. children and those with Chronic Regional Pain Syndrome) would be disadvantaged without the retention of reasonably easy access to Bath. Another stated more generally that Bath provides a good model, while a further respondent argued that maintaining professional links and support between staff in Scotland and Bath would be valuable. One respondent stated that the Bath option should be retained because the funding for a local resource may be limited.

4.76 Comments on perceived drawbacks focused largely on the view that this would be unnecessary with a Scottish service. One respondent argued that the retention of Bath could detract from the NHS developing the new service in Scotland, and stated that it should not be used to tackle problems that should be addressed in Scotland.

4.77 A few respondents expressed the general view that Bath should be retained in the first instance, then reviewed or phased out. A few argued specifically that it should be retained while a Scottish service becomes established and gains experience, or until the volume of referrals is assessed. It was suggested that this would provide the opportunity to share expertise, and for a Scottish service to concentrate on basic pain management in the first instance.

Other comments

4.78 Comments were also made at these questions about the nature of current provision, the consultation itself and other aspects of taking the service forward. These issues are discussed in the final section.