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

Section 1: The Consultation

1.1 This report presents the findings of a written consultation carried out by the Scottish Government on "The Provision of Specialist Residential Chronic Pain Services in Scotland". The consultation took place between 2^nd September 2013 and 27^th October 2013.

Background to the consultation

1.2 The Scottish Government recognised chronic pain as a condition in its own right in 2009. There have been a number of developments in Scotland in recent years to develop services to meet the needs of people living with its impact. There is now a Scottish Service Model for Chronic Pain^[2], and service improvement groups are also being established to implement the model and help to develop chronic pain services locally.

1.3 As part of improving provision, the Cabinet Secretary for Health and Wellbeing has pledged to establish a specialist residential chronic pain service in Scotland. Such provision is currently made at the Royal National Hospital for Rheumatic Diseases in Bath, where people can receive specialist treatment on a residential basis over 2-4 weeks. It is recognised, however, that this location creates a wide range of practical and other difficulties for both patients and those who support them.

1.4 The Scottish Government recognised that there are a number of ways in which a specialist residential chronic pain service could be delivered in Scotland. A consultation was undertaken to enable the widest possible range of stakeholders to consider the options for such a service, and to identify their views of the way forward.

1.5 These views are summarised in this report, and will be considered in making a decision about the most appropriate model for a specialist residential chronic pain service in Scotland in the future.

The consultation process

1.6 The consultation document identified three options for the delivery of specialist residential chronic pain services in Scotland (described further in Section 2). The options presented were:

• Option 1: A Centre of Excellence in a single location.
• Option 2: A service delivered by local chronic pain clinicians supported by other clinical advisors in another part of the country.
• Option 3: A service delivered in different locations by a team of chronic pain specialists (an outreach or roving service).

1.7 Respondents were also invited to identify any other ideas. The consultation explored 11 questions, not only about participants' views of the options, but also about issues such as: barriers to services; components of a service; and personal experiences of service use. Respondents also had the opportunity to make any other comments about the issues in the consultation paper, or current chronic pain services in Scotland.

1.8 Written responses to the consultation were invited, along with the completion of a Respondent Information Form (RIF). A full list of the questions is provided at Annex 1.

1.9 Additionally, the Health and Social Care Alliance Scotland (referred to as the ALLIANCE) organised four stakeholder meetings to discuss the issues raised by the consultation. These were written up by the ALLIANCE and provided to the Scottish Government. These findings have also been included in the analysis and summary.

Submissions and respondents

1.10 A total of 228 submissions were received to the written consultation. Question 1 asked respondents to self-select from a number of pre-determined categories to describe the basis upon which they were responding. These are set out in Table 1 (below).

Table 1. Respondents by self-selected category

Respondent Category	No.	%[3]
An individual who experiences chronic pain	79	35
Other stakeholder	43	19
A family member or carer of someone who experiences chronic pain	33	14
A health professional	30	13
An organisation representing people who experience chronic pain	18	8
Respondent selected more than one category	14	6
Undetermined	11	5
Total	228

1.11 As can be seen from the table, the most common category of respondent was individuals (35%). Also common were responses from other stakeholders (19%). This category included, for example: some NHS and health bodies; Royal Colleges and professional associations; a variety of representative organisations; an MSP; a local authority; and a number of respondents who did not specify the nature of their involvement. Responses were also received from a number of family members or carers of people experiencing chronic pain (14%); health professionals (13%); and organisations representing people experiencing chronic pain (8%).

1.12 As respondents were able to self-select, there was some cross over in the use of categories, particularly "health professional" and "other stakeholder". Respondents on behalf of NHS bodies (13) used three different categories^[4].

1.13 A total of 14 respondents (6%) selected more than one category, generally "individual" and "organisation". In 11 cases, no category could be determined (e.g. where the respondent had not completed the question, or had not used the form). A list of respondents is given at Annex 2.

1.14 Most of the respondents (215) either used the "new"^[5] online form for their response, or substantially followed the sequence of the questions. A small number of responses (9) were submitted using a previous version of the response form or in a letter which did not address any of the questions directly (4). Responses were submitted in both hard copy and electronic formats.

1.15 A total of 77 participants attended the stakeholder events, which were held in:

• Glasgow (23^rd August, 2013).
• Inverness (21^st October, 2013).
• Dumfries (23^rd October, 2013).
• Glenrothes (24^th October, 2013).

Analysis of the data and presentation of the information

1.16 The analysis of the data involved a number of stages, as follows:

• An Access database was designed to include the data relating to each of the questions.
• Information was input verbatim, both from the written responses and from the summarised feedback from the ALLIANCE's stakeholder events.
• Responses to the closed questions were analysed and the quantitative findings prepared.
• A series of Word documents was generated for the qualitative material, containing all of the responses to each of the open questions.
• Key themes and sub-themes were identified for each question, and detailed comments organised into a series of issue-based documents.
• The findings were summarised and the report prepared.

1.17 While much of the information in the report is qualitative, the presentation of the information involves both quantitative and qualitative material. In terms of quantitative information, this covers:

• The number and types of respondents.
• The number and proportion of respondents who addressed each question.
• The balance of views expressed in the tick boxes at the "closed" questions.
• The overall patterns of views relating to the three options.

1.18 Some aspects of identifying the patterns of views of the options (beyond the information in the tick box question) required subjective judgement. As such, the findings cannot be considered to represent an "exact" number but rather a general indication of the pattern of responses.

1.19 Much of the focus of the analysis, however, was qualitative and the presentation of the material reflects this by highlighting the overall themes and the range and depth of views expressed. The report uses qualitative terms such as "a very small number"; "a small number"; "several"; "many"; "a large number"; etc. to describe views expressed on particular themes.

1.20 It would be inappropriate to attempt to quantify respondents' detailed views further. Among the reasons for this are that:

• Some points were made at different questions, or overlapped more than one theme and judgement was required to allocate some points to questions.
• Some responses were submitted on behalf of organisations and / or represented the views of a number of respondents.
• The stakeholder events did not involve a "count" of views.
• The focus of the detailed questions was on the identification of views and suggestions to inform the way forward, rather than on any "weighing" of responses.

1.21 Where the term "respondent" is used, this refers to one response, even where this may represent the views of more than one contributor. Each of the stakeholder events was treated as a "response".

1.22 The wording used to make a point sometimes follows the wording of a response closely. This ensures that a respondent's point is reflected (even though it is not presented as a "quote"). Where a respondent requested that their material should remain confidential, the source of views presented has not been identified.

1.23 This report clearly cannot present all of the detailed individual points made by every respondent, nor can it provide a compendium of the material. It does, however, summarise the themes and issues raised, and the full text of the responses can be viewed on the Scottish Government website.

1.24 The remainder of the report presents the findings. The sections do not follow the sequencing of questions, but group together those covering related issues, as follows:

• Section 2 covers the findings relating to the three options in the consultation document, and other ideas (Questions 2, 3 and 4).
• Section 3 covers the findings on barriers to services and respondents' experiences of residential services (Questions 5, 8, 9 and 10).
• Section 4 covers the findings on the questions relating to components of service provision (Questions 6 and 7).
• Section 5 covers any other issues raised in the consultation.