Future provision of specialist residential chronic pain management services in Scotland: consultation report

Chapter 2: Summary and Conclusions

In this chapter we will explore the main themes identified in the analysis report of the consultation findings and set out our response to the points raised. Our full response relating to the next steps in establishing the new service is discussed in Chapter 3. Due to the way in which people responded to the consultation, the analysis report grouped related questions under five main sub-headings. We have kept, where possible, the same format in order that this report can be followed alongside the analysis report.

The Consultation

Analysis of the data and presentation of the information

The analysis of the responses was conducted independently as a Social Research project, in adherence with social research professional and ethical guidelines for undertaking research. Throughout both the analysis report and this report, 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".

While much of the information in the analysis report is qualitative, the presentation of the information involved both quantitative and qualitative material. In terms of quantitative information, this covered:

• 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

Much of the focus of the analysis, however, was qualitative and the presentation of the material reflected this by highlighting the overall themes and the range and depth of views expressed. The analysis 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.

Responses

A total of 228 responses were received to the consultation. Where respondents consented to publication of their response, these are available in full on the Scottish Government website at: http://www.scotland.gov.uk/Publications/2013/11/9145/0.

Respondent categories (Question 1)

Question 1 asked respondents to select from a list to describe the basis on which they were responding. As can be seen in the table below, the most common type of response was received from individuals who experience chronic pain, with 35% of responses in this category.

Table 1. Respondents identified by category

Category	No.	%1
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	100

Also common were responses from the other stakeholder category which included:

• Some NHS and health bodies
• Royal Colleges and professional organisations
• A variety of representative organisations
• An MSP
• A local authority
• A number who did not specify the nature of their involvement

Conclusion

The aim of the consultation was to reach a wide audience and the range of responses received suggests that this has been achieved. It is also noteworthy that just under half of the responses received were from people directly affected by chronic pain, as the individual or a carer or family member. When adding to this the responses received from organisations representing people with chronic pain, we can be confident that the result of the consultation fully reflects the experiences and views for whom the service is for.

Views of Options (Question 2)

Preferred Option

Question 2 asked respondents to identify their preferred option from the three options presented in the consultation paper.

The consultation indicated a clear preference for Option 1.

A total of 89% of respondents selected a single option. Of those respondents who answered Question 2, 75% indicated a preference for Option 1 alone. Within each of the respondent categories a similar pattern of support for a centre of excellence emerged.

Table 2: Preferred Option

Preferred option	No.	%2
Option 1 - centre of excellence in single location	154	75
Option 2 -	28	14
Option 3 -	12	6
Options 1 & 2	4	2
Options 1,2 & 3	4	2
Options 1 & 3	1	<1
Options 2 & 3	1	<1
Total	204	100

Respondents noted a number of reasons for their preference including views that Option 1 offered the potential: for providing a high quality service; for bringing together an expert multidisciplinary team in one place (which would be easier to monitor, inspect and audit); for attracting and retaining staff; for promoting peer support; and offering the most sustainable solution. In addition, it was considered that a centre of excellence has the potential to foster research and to develop clinical guidelines for use across Scotland to support further improvement in chronic pain services at a local level.

Question 3 asked if there were any of the options that were disagreed with. Option 1 generated the fewest comments in this respect. Those who responded largely related to location and access, noting that there would still be issues associated with travelling distance and potential inaccessibility due to, for example, health or weather.

Additional concerns related to staffing and resources which may impact on local services and the development of waiting lists.

Question 4 asked for any other ideas not covered by options included in the consultation. Around a fifth of those who responded indicated the benefits of a combination of the options. A number of respondents ticked more than one option indicating broad support for the development of a centre of excellence, along with elements of service provision from the other options presented. This included the option to include, for example, telehealth solutions that would be of benefit particularly for those in remote and rural areas.

Location of Service

Although no specific question was included in relation to the location of a service for Option 1, (or the other options) a number of respondents offered additional comments on this. In particular, a number of respondents to the consultation have suggested that the service could be located at the Centre for Integrative Care based in Glasgow. Additional comments in the consultation noted other specific and more general geographic locations with suggestions including:

• Southern General Hospital, Glasgow
• Astley Ainslie Hospital, Edinburgh
• St John's Hospital, Livingston
• Glasgow, Perth, Stirling and Dundee
• Central belt or at north/ south locations
• A location with good transport links

Conclusion

Following the publication of the Analysis of Consultation Responses, the Cabinet Secretary confirmed on 23 January 2014 that work would now progress to establish the service at a single location.

With a clear preference indicated for Option 1, this section of the report does not cover the detail of views expressed and the range of comments made in relation to the other options presented in the consultation. However, there was clear support for some of the elements of the other options and these are considered in Chapter 3.

Barriers to Service Provision and Respondents' Experiences (Question 5)

Question 5 asked respondents to identify any barriers to accessing a residential pain management service. Of the 74% of respondents to the written consultant who addressed the question, almost all identified barriers to service provision.

Most respondents identified travel and costs as the main barriers, in particular the need to pay for travel in advance. It was noted that arrangements for meeting costs differed by health board area and that clear guidance to help people understand how to claim expenses would be beneficial. It was also noted that difficulties in planning travel arrangements could be a barrier in itself. Parking facilities were also noted as a potential problem.

For some, existing carer responsibilities or childcare would be a barrier and it was suggested that social care or respite care be arranged to help resolve this. Employment and the need to take time off work were commented on, with the suggestion that information for employers could be helpful in addressing such issues.

Gaining Access to the Service

Many noted gaining access to the service as a barrier in itself noting a number of reasons for this including:

• Reluctance of GPs and other health and social care staff to refer
• Lack of recognition of the level of pain or the condition
• Lack of knowledge and awareness of service options (by healthcare staff and patients)
• Lack of understanding of arrangements for referral and access to services

Comments were also made on the:

• General lack of accessibility of services
• Time taken for a diagnosis (and possible misdiagnosis)
• Length of waiting time
• Lack of availability of beds
• Sufficiency of numbers for provision
• The need for clear and well communicated referral arrangements

Attending the service itself and the added anxiety of attending an unfamiliar location were noted as barriers and it was suggested that providing a virtual tour of the facilities and an introduction to staff would help people familiarise themselves with the service prior to attending and reduce some of the anxiety.

Conclusion

This information provides us with some very useful insights into how we can improve the delivery of services.

Travel and Costs

Difficulties with travel and costs are not confined to accessing national services and are for many a consideration when accessing local services, especially for people living in remote and rural areas. There are existing arrangements to help people with travel costs, information on which is set out below.

The Patient Travel Scheme provides help with travel costs for those in receipt of certain Department of Work and Pension benefits, and also to those not in receipt of benefits, but otherwise assessed as being on low income by the NHS Business Services Authority.

The Scheme is administered by each Health Board individually but, in general, patients pay their travel fare upfront and, upon attending hospital, present their documents to reception in order to claim a refund. Claims can also be made up to three months after the date of travel, upon completion of a claim form. More information on the Scheme is available at: http://www.scotland.gov.uk/Resource/Doc/348077/0115949.pdf

Health Boards also have the discretion to refund the cost of travel for patients that are not covered by the Patient Travel Scheme, but where travel is required to a distant hospital and is considered to be part of the cost of treatment.

In terms of the current residential programme at Bath, travel costs for those participating have in most cases been met by the referring Health Board, with accommodation costs included in the overall cost of the treatment.

Healthcare Improvement Scotland (HIS) recently launched the new Chronic Pain website which is a resource for quality assured information on chronic pain for patients, carers, family and healthcare professionals. A sub-group of the National Chronic Pain Steering Group has been tasked with maintaining the website, which includes pages for each of the NHS Boards. A request to add the guidance on the Patient Travel Scheme to the website has been sent to the group and individual boards have been asked to include local arrangements for travel costs on their individual pages.

Specific information for the new Scottish National Chronic Pain Management Programme will be added when available.

Accessing Chronic Pain Services

The Scottish Government are committed to ensuring that people have access to high quality safe and effective services as close to home as possible, with ready access to specialised services when needed. In achieving our vision it is crucial that patients, health and social care professionals have knowledge of those services available locally and nationally, and how and when to access these.

Further information on local chronic pain services and on the current improvement programme at Annex A.

An additional resource for information about what support may be available in your local area is ALISS - A Local Information System for Scotland.

ALISS is a search engine which aims to make it easier to find local resources. More information is available on the website at: http://www.aliss.org/

Other barriers

Employment was a key theme identified in the responses to the written consultation. Healthcare Improvement Scotland recently conducted a data collection exercise, the initial high level findings from this exercise highlight the high proportion of people living with chronic pain who are of working age and struggling to remain in work.

The Scottish Government recognises the link between work and health and the Health Works Strategy, published in 2009, sets out a range of actions to ensure that health is not a barrier to work. The Scottish Centre for Healthy Working Lives provides a valuable resource for employers and employees, and has led on the delivery of a number of the actions in the strategy. There is a clear opportunity both for the National service and local chronic pain services to link with the work of the centre to further support people to remain in work.

Of particular benefit for people living with chronic pain will be the national roll-out of the musculoskeletal (MSK) service redesign. An integral part of the re-designed pathway is the Musculoskeletal Advice and Triage service (MATs), which at first point of contact signposts people to a range of support including: self-management resources, physiotherapy services, employment advice and physical activity. Through the National Chronic Pain Steering Group we are ensuring that chronic pain services are linked with the MSK redesign as this rolls out across Scotland, there are already excellent examples of the benefits of aligning this work with chronic pain redesign, particularly in NHS Ayrshire and Arran.

Respite/social care

We recognise that due to the length of the residential programme that for some people there will be additional practical difficulties that will act as a barrier, in particular where arrangements for childcare or respite care would need to be made. This is a prime example of why integration of health and social care is needed.

The Bill, which became the Public Bodies (Joint Working) (Scotland) Act on 1 April 2014, was introduced to Parliament on 28 May 2013 and passed by the Parliament on 25 February 2014. The Act sets out the legislative framework for integrating health and social care, which will support improvement of the quality and consistency of health and social care services in Scotland. An extensive period of engagement was carried out last year and we continue to work collaboratively with stakeholders though a range of working groups to develop regulations and guidance.

The Act will put in place arrangements for integrating adult health and social care, in order to improve outcomes for patients, service users, carers and their families and to enable Health Boards and local authorities to work together effectively to deliver quality, sustainable care services. This is expected to help facilitate a shift in spending towards community based services based on the needs of the population, ensuring an effective focus on reducing unplanned care and improving outcomes. This should also aid the provision of seamless care, through the joint commissioning of services.

The Act will tackle the challenge of ensuring a consistent provision of quality, sustainable care services for the increasing numbers of people in Scotland who need joined up, integrated support and care - particularly those living into older age and people with multiple, complex, long term conditions.

Integration authorities will be accountable for delivering new Health and Wellbeing outcomes. NHS Boards and local authorities will put in place integrated budgets, delegated to their local integration authority, to ensure better, more effective use of their total resources.

Previous experience (Questions 8 - 10)

Questions 8 - 10 asked for views of those with previous experience of attending residential services. A small number indicated personal experience of using such a service, however, most identified that they had knowledge of others' use of the service through professional capacity, or as a peer. The specific services identified included: Bath; Abingdon Hospital; the Chronic Fatigue Syndrome clinical service in Newcastle; and a spinal unit. In commenting on the advantages/disadvantages of the experience, most of those who responded were generally supportive of this type of service.

Question 10 asked if the service had been offered and declined and the reasons for declining. A total of 27 respondents made comments on this question with almost half noting they had never been offered the service or had been refused access to it. Of the half that had been offered and declined, the main reasons given were that of location and distance. A very small number also noted reasons of:

• Costs (general and "upfront")
• Time away from home and family
• Work commitments
• Health issues (e.g. medical commitments)
• Patients' perceptions of provision (e.g. fear; expectations; lack of readiness to engage)

Conclusion

Respondents to the consultation generally supported the need for and saw advantages of specialist residential chronic pain management services. It is not unexpected that only a small percentage of the respondents had direct experience of this type of service given the numbers of referrals currently being made.

The reasons for declining a placement provide a helpful insight into the perceived barriers. These will be considered in the development of future service provision.

The establishment of the service in Scotland will help to address some of the identified barriers such as its distance from home. However, we recognise that the very nature of the service and why it works in terms of its length and intensity would be lost if the programme were to be shortened to address issues such as time off work / away from home and family.

Components of Service Provision (Question 6)

Question 6 sought views on the suggested components to be included in the specialist programme, asking respondents to select from a list with the option to identify any additional components not listed.

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

Aspect of service	No.	%3
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

These aspects were developed for the consultation by the NSD expert group, drawing upon an understanding of the service currently provided in Bath. The consultation indicated overwhelming support for the identified elements to be considered in the provision of the new service.

A total of 201 respondents addressed the question indicating strong support for all the elements of service provision identified in the consultation, with more than half selecting all of the elements.

In addition to suggestions on the ways in which the service elements could be designed, respondents also suggested other elements which could be included in the service, these covered for example:

• follow up with ideas of how this could be done including utilising email, telephone, web-based 'top ups', evaluations etc
• education and information for patients, carers and family members
• family therapy or psychology
• ongoing support via a helpline, DVDs or memory sticks
• access to education, employment and benefits support and advice
• general awareness raising
• support required for a range of specific groups
• facilities e.g. pool, hydrotherapy, gym, cooking facilities
• a research centre

Conclusion

This provides a very useful steer on what respondents feel are priorities and will help to inform the future development of the work. All of the core elements identified by the expert group have been endorsed by the findings of the consultation and have been included as requirements for the new service.

Individual respondents provided a wide range of ideas and suggestions about the scope and content of the proposed service including about assessment, the role of carers, follow-up arrangements, education and information, the needs of specific groups (such as deaf and deafblind people, veterans, children), and specific facilities (such as access to a gym or pool). These ideas have been taken into account in developing the specification for the new service and will help shape the future design of the service and programme.

Further details on how we envisage ensuring that these views are addressed are set out under the discussion of the Scottish National Chronic Pain Management Programme in Chapter 3.

Some of the suggestions, whilst important in the overall care of people living with chronic pain, may not be considered for inclusion in the national service. This is, for example, the provision of interventions such as acupuncture, which we expect to have been considered locally as part of the initial care plan.

Retention of access to the current service provided in Bath (or elsewhere in the UK) (Question 7)

Question 7 in the consultation sought views on the retention of the current service for occasional use.

Retain access to Bath	No.	%4
Yes	98	48
No	51	25
Don't know	56	27

A total of 205 respondents expressed a view at Question 7, 48% of which agreeing that the service should be retained either for occasional use as indicated by the question or further qualifying that:

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

Other comments noted that the retention of the current service would not be required once the Scottish service was established, or that it should be retained then reviewed or phased out, or retained while the volume of referrals is assessed. It was also suggested that professional links be maintained to support staff in the new service.

Conclusion

In taking forward the development of the new service and considering any future use of the current provider or alternative providers, the comments made throughout the consultation are fully considered in the context in which they were given.

The Scottish Government is absolutely clear that the Scottish National Chronic Pain Management Programme will be the primary service provider and the use of alternative providers will be considered only in very exceptional circumstances, based on clinical need, in consultation with the patient, family, carer, referring clinician and the national service.

Other Issues Raised (Question 11)

As part of the consultation we were keen to hear the views on any aspects of current chronic pain services across Scotland and also about the consultation process itself. This section of the analysis report covered the range of comments made in response to Question 11. Over half of the respondents to the written consultation made additional comments which covered a wide range of topics.

A large number of respondents made comments on the current context and nature of services. Many of the comments related to the nature of pain and its impact on individuals' lives.

Several respondents commented on the need for a residential service and the likely level of demand for such a service. It was commented that the likely level of demand is currently unclear, or that there are conflicting views on likely demand. This is reflected in the range of comments made, with some respondents noting that the level of demand has been underestimated and others noting that improving local service provision could reduce demand. It was also noted that the consultation should have included information on the level of demand and cost implications.

In addition, it was suggested that the consultation should have included a review of the evidence base comparing outcome data for the residential and outpatient approach to the delivery of specialist chronic pain services.

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

• the conditions that would be covered by the service
• the referral processes
• staffing
• provision in particular areas and to particular groups
• other aspects of the options presented in the consultation document
• funding and costs
• the evidence available

Conclusion

Level of Demand

The consultation document did not provide information on the likely level of demand as accurate information on likely level of service use is not available. Whilst numbers of current users is recorded, NHS Boards do not currently collect data on the numbers of those who are referred but do not attend/decline.

As identified by respondents, it is considered that with improved access to local services and improved awareness and management in primary care, the number of those requiring specialist treatment may decrease over time. On the other hand, improved awareness of the specialist service and the availability of the service in Scotland may result in an increase in the numbers of referrals.

In previous years the number of patients attending Bath has been within the range of 20 to 32 patients per year, with the highest attendance in 2010/11. However, current figures for 2013/14 show a marked decrease in referrals at 14 by 13 March 2014. Anticipation of the new Scottish service may have contributed to this decline.

Chronic Pain affects 800,000 people in Scotland with an estimated 223,000 experiencing severe chronic pain. We know that there is currently an unmet need for this service and based on current numbers of people seen in the secondary care setting and the rise in demand for these services being reported by boards we expect that the number of people who would access the service is higher than the current rate of referral. In commissioning the service, an estimate of likely level of demand has been assessed at around 100 patients per year. Further detail is provided in Chapter 3.

Current service provision

Many respondents commented on the current provision of services, a number of whom highlighted problems in this area including: a view that the service is generally poor; services vary between different areas; and there are particular problems for those in remote and rural areas. It was suggested that there can be long waiting times for accurate diagnosis and treatment and that services may not have adequate staffing levels. Some also noted a reliance on pain medication, or difficulties accessing particular forms of treatment or support for specific conditions.

Some positive comments were also made. These related to the development of the residential service and the general work underway to improve services across Scotland.

Many comments were made on the way forward with recognition of the need for improvement of services at a local level to ensure access to effective pain services across Scotland for all those who need them, not only those who are worst affected.

The need for clear pathways was identified and other 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

It was suggested that there should be local pain teams and clinics in all areas and Managed Clinical Networks across Scotland, utilising telehealth solutions and including outreach or mobile services.

Other key themes identified included the need for education and training, with comments on specific groups for which training should be provided:

• 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

Specific issues for training were also identified:

• 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

Suggestions were also made on how training could be provided:

• Continuing Professional Development (CPD)
• Secondment or rotation from existing services to an intensive service
• Shadowing
• Clinical guidelines
• Sharing knowledge and experience on a national level
• Chronic pain symposium which could be podcast to the wider community

Conclusion

Throughout the consultation both in the stakeholder events and in the written responses there was considerable discussion and reference to current local chronic pain service delivery. It is clear that there is uncertainty around which services are /should be available locally and about what a residential service aims to provide and how this fits within the overall provision of chronic pain services.

Comments were made at various sections in the analysis report. This section of the report aims to address these points.

Whilst some positive comments were made in the response to the consultation, most people who commented on current services were less positive about their experiences. This is disappointing and we recognise that whilst improvements are being made there more remains to be done.

The Scottish Government is committed to providing the highest quality services and wants people to be at the heart of the NHS in Scotland, to ensure that the services our NHS provides are truly person-centred.

It is essential that we listen to the lived experiences of patients and take action to address problems when they arise. This is, in many circumstances, best done locally with the appropriate NHS Board. Patients can raise concerns through the established NHS Complaints procedure or they may choose to share their experiences via Patient Opinion.

Completely independent of government and the NHS, Patient Opinion is a website where patients, their carers or family members can tell other people about their experiences of the NHS. NHS Boards are alerted to stories posted about services in their area and are encouraged by the Scottish Government to post responses saying what they have done in light of what patients have said. It aims to make it easier for people to give feedback and for NHS Boards to get those opinions to the people who need to see them and ultimately, to make services better.

This can be done on line at www.patientopinion.org.uk or by telephone, the number is: 0800 122 31 35.

Patient Involvement

The Charter of Patients' Rights and Responsibilities sets requirements for all NHS Boards to engage with patients, carers and families in decisions about services. All of the local chronic pain Service Improvement Groups and Managed Clinical Networks are required to have patient involvement/engagement.

We have also recognised this at a national level by strengthening the membership of the National Chronic Pain Steering Group to include direct patient membership to compliment the third sector membership.

Chronic Pain Services

The Scottish Service Model for Chronic Pain (see Annex B) sets out the range of services that should be provided locally (levels 1-3) through to the more specialised interventions that may be provided regionally or nationally (level 4). The model sets out a tiered model of care in the approach to pain management covering the range of support available of which pharmacological management is one component:

Level 1 - Self management support in the community - advice and information about pain, including resources available from third sector providers/organisations.

Level 2 - Primary care support - treatment and management provided by a GP, pharmacist or Allied Health Professional (AHP).

Level 3 - Secondary care support - specialist treatment and management provided by a range of healthcare professionals in the hospital setting, delivered by multidisciplinary teams, including outpatient Pain Management Programmes.

Level 4 - Tertiary Care - highly specialised treatment and interventions, including Spinal Cord Stimulation (SCS), Intrathecal Drug Delivery, specialist residential Pain Management Programme.

Since the launch of the consultation the model has been refreshed and is included at Annex B of this report.

The routine assessment and management of chronic pain is a required competency of all healthcare professionals as well as being an important component of healthcare planning.

The Scottish Government is clear that the provision of the national specialist residential service in Scotland is not an alternative or substitute for the provision of the locally delivered chronic pain primary and secondary care services described in level 1-3 of the service model.

Assessment for and referral to the national service will be made by the secondary care team having followed a care pathway through level 1 - 3 services.

We recognise that there is much to be done but that with the range of activity underway and planned at local and national levels, change will start to be seen quickly and more patients will experience the highest quality of care.

The Scottish Government is fully committed to the implementation of the Scottish Service Model for Chronic Pain and ensuring the provision of the full range of services it describes.

More information on the work in progress to achieve this is provided in Annex A.