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

Section 3: Barriers to Service Provision and Respondents' Experiences

3.1 This section presents the findings on barriers to service provision and respondents' experiences of residential services (covering Questions 5 and 8-10 in the consultation document).

Barriers to accessing a residential pain management service

3.2 Question 5 asked respondents to identify any barriers to accessing a residential pain management service. For reference, the question was:

Question 5: What do you think the barriers are to accessing a residential pain management service? (For example, distance away from family, work or family commitments, upfront travel costs.)

Please list as many as you wish in the comments box below and include any others that are important to you.

Overall views of barriers

3.3 Around three quarters of respondents to the written consultation (74%) addressed this question directly, and almost all identified barriers. Barriers were also identified in the stakeholder meetings, and at other points in stakeholders' responses.

3.4 In addition to identifying barriers, around a third of these respondents (and some participants in the stakeholder meetings) also made comments about ways to overcome the barriers. Some argued generally that the barriers could be overcome, or that people in chronic pain would view relief from pain as the priority, and would address barriers in order to access treatment.

3.5 Similarly, several respondents qualified their response by suggesting that there were few (or no) barriers for people experiencing chronic pain, or that the benefits of getting intensive treatment and dealing with the pain would outweigh any barriers. Some suggested generally that there would be fewer barriers with the provision of residential chronic pain services in Scotland.

3.6 Respondents provided a large amount of information about the nature of barriers and ways to address these, and these are detailed below.

Costs

3.7 The barriers identified most frequently related to costs. Financial issues (for the patient and family or other support providers) were noted as presenting a general barrier for many. Many of the comments relating to costs focused specifically on the cost of travel and the lack of provision of "upfront costs". It was argued that expenses are high, and patients have to wait for reimbursement. One respondent stated that there are different arrangements for this in different health board areas.

3.8 Comments were also made about other specific costs, such as:

• Visits.
• Accommodation and subsistence.
• Lost working time.
• Carer expenses.
• Childcare expenses.

3.9 Comments were also made about the financial circumstances of some people who experience chronic pain (e.g. low income, receiving benefits, in debt or poverty). These were seen to exacerbate financial barriers. One respondent also suggested that home insurance (e.g. when the house is empty) can be an issue for people experiencing poverty.

3.10 A few comments were also made on the cost of provision to the government, and the cost of residential provision.

3.11 Comments were made frequently about the need to address barriers relating to costs. Suggestions included the provision of general financial support to meet costs (for patients and carers), as well as the provision of help with benefits. It was also argued that travel costs should be met and upfront costs paid (or reimbursed promptly). A suggestion from the stakeholder meetings was for clear guidance about financial support, and to ensure that people understand how to claim expenses.

3.12 A few respondents suggested potential means of delivering a subsidy to service users. It was suggested in one of the stakeholder meetings that there may be a future role for Third Sector organisations to support people who are struggling to cover upfront costs. It was also suggested that costs to service users would be less with Scottish-based provision.

3.13 In terms of the costs of service provision overall, it was suggested that it would be important to consider the long term savings and efficiency of provision (e.g. return to work, and savings from a single location).

Location and distance

3.14 Location and distance were also among the barriers identified most commonly. Among these, most comments focused on issues such as the distance of provision from a service user's family, home environment or work, and the implications of distance for travel time.

3.15 A link between travelling time and the likelihood of visits was identified. It was argued that the distance from a service user's home environment may also be challenging, and may impact on the success of the work carried out and the opportunity for follow-up.

3.16 Suggestions about addressing barriers relating to location and distance were also common. These included the view that provision in Scotland would lessen these (by, for example, having shorter travelling distances compared to travelling to England). While some respondents argued that a degree of travel would be required wherever services were located, it was also noted that there are existing transport links in Scotland.

3.17 Some respondents also argued that people in remote and rural areas are used to travelling to access services. A further view expressed was that having a single location would reduce or remove the need for repeated trips. Some respondents, however, stated that distance would still be significant for some service users (e.g. people in remote or rural areas), or may remain a problem for some.

3.18 Other suggestions to address location and distance barriers included having an accessible location with good transport links (and parking) and an established pain management programme. It was also suggested that the provision of additional centres and local support (including outreach) could help. Additionally, some specific suggestions about the location of the Scottish service were made at various points in respondents' material. These are considered further in Section 5.

Other transport and travel issues

3.19 More general transport and travel barriers were also highlighted. Some respondents mentioned general travel difficulties for people experiencing chronic pain. Most comments, however, focused particularly on some patients' lack of fitness to travel and the pain experienced during travel.

3.20 Other issues raised included the lack of access to, or availability of suitable transport (including physically accessible transport) or a lack of access to support with transport. A few respondents highlighted difficulties of planning transport to a service location (and the additional stress of this). One respondent argued that the number of stages in a journey, or the mode of transport available may be more of a barrier than the distance. Comments were also made about the potential impact of the weather and the difficulties of parking in some healthcare environments.

3.21 Many respondents made suggestions about ways to address these barriers. It was suggested that patient transport, community transport and other supported travel options should be available, in addition to meeting travel costs, considering the location of a service and providing local services.

3.22 It was also suggested that some patients would need rest time to recover from the journey before participating in treatment. The view was also expressed that the service in Bath should remain an option for some patients who may find this easier to access.

Family commitments and access to personal support

3.23 A further common theme was the identification of barriers relating to family commitments and access to personal support. While some respondents highlighted general family and home commitments (for patients and carers), most of the comments focused on more specific issues.

3.24 Several respondents mentioned childcare and other caring responsibilities (e.g. caring for elderly or disabled people or for pets). Barriers were also identified in terms of the amount of time away from family and home, and the consequent lack of access to personal and social support and care (practical and emotional). A few comments were also made about barriers relating to other support required (e.g. language and communication; assistance dogs; and particular equipment).

3.25 A number of suggestions were made about ways of addressing these barriers. For example, it was suggested that social care and respite support could be provided to assist with caring responsibilities. It was also argued that there should be opportunities for family members to stay, for carers / support providers to attend, and for carers' needs to be met. One respondent suggested that there should be access to a phone taking incoming calls, and a computer (for Skype and email contact). Additionally, it was suggested that equipment and other practical needs should be considered and met.

3.26 It was also argued that, for some patients, provision in Scotland would make it easier for friends and relatives to visit, or for someone to accompany them.

Gaining access to the service

3.27 Many respondents mentioned barriers to gaining access to the service. Several made comments on difficulties in getting a referral, such as:

• 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.

3.28 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.

3.29 A few respondents made suggestions about addressing such barriers. These included having: early diagnosis; prior support (e.g. group sessions or access to a specialist); clear and well-communicated referral arrangements; and adequate staff. It was also suggested that there should be equal access to the service, and education and awareness raising for those making referrals.

Education and employment issues

3.30 Education and employment issues were also highlighted as barriers by many respondents. Some cited general commitments, while others highlighted more specific issues. It was suggested, for example, that it may be difficult to get time off (for the patient and family members). Some respondents suggested that there could be problems such as loss of earnings or even loss of a job. Others noted a potentially negative impact on promotion prospects, or an impact on holiday entitlement (or the need to use annual leave to attend).

3.31 One respondent stated that children and young people may miss schooling and exams.

3.32 A few respondents made suggestions about ways of addressing education and employment barriers. These included the provision of support by employers and the provision of information and support to employers. One respondent suggested that access to a dedicated disability team helping people in work may be necessary. It was also suggested that services should meet the needs of children and young people (and this is discussed further at 4.57).

Physical and mental health issues and personal perceptions of provision

3.33 A further common barrier related to physical and mental health issues and personal perceptions of provision. As noted previously, the nature of pain was seen to present some travel barriers. It was also suggested that personal attitudes to pain may be a barrier. It was suggested at one stakeholder meeting, for example, that people may "underplay" their level of pain.

3.34 There were also seen to be barriers from the effects of specific issues or conditions (e.g. severe fatigue; complex nursing care needs; multiple health conditions; neurological conditions; and mental health problems). A few respondents stated that age could impact on accessing a service.

3.35 Additionally, several respondents mentioned patients' perceptions of provision which may create barriers, such as:

• Expectations of the service.
• Previous negative experiences.
• Uncertainty and anxiety.
• Perceived stigma of being "sent away".
• Concerns about a lack of anonymity.

3.36 In terms of addressing these barriers, it was argued that local provision could provide an option for many patients. It was also suggested that there should be education and awareness raising about the services available. One respondent suggested that a virtual tour of what to expect at a residential facility would help address some anxieties.

3.37 Some wider points about information and awareness raising as part of the way forward are considered further in Sections 4 and 5.

Aspects of the type of provision available

3.38 Aspects of the nature of service provision available were seen by several respondents as a barrier. These included the types of treatment and therapies available. Potential barriers were seen to include, for example, over "medicalisation" and use of medication, or a lack of access to some forms of treatment or input to meet patients' needs.

3.39 Additionally, it was suggested that the duration of the treatment term could be a barrier, as could potential difficulties posed by a long period of continuing consultations. It was argued that the environment and facilities available could present potential barriers. There were also seen to be barriers relating to local services (e.g. the potential for polarisation of skills; the absence of appropriate pain services; and a lack of development of such services).

3.40 One respondent suggested that a residential pain management programme may hinder the implementation of the Scottish Service Model. They stated that it may be interpreted that patients' needs were seen to be being met.

3.41 A few suggestions were made about ways to address barriers relating to the nature of provision available. These focused on the provision of specific types of treatment and therapies (discussed further in Section 4) or access to particular facilities or means of provision. These included:

• A nurse-run residential in-patient unit.
• Appropriate residential facilities to meet a range of needs.
• The opportunity to return home.
• Multidisciplinary provision.
• Local support and provision.
• Flexibility in provision.
• The use of telemedicine and outreach.

3.42 It was also suggested that there should be research into chronic pain in the context of developing information systems for long term conditions monitoring.

Barriers for specific groups

3.43 A small number of respondents identified barriers for specific groups.

3.44 Among the groups identified were people in rural areas, particularly in terms of travelling distance, but also the existence of poverty in such areas.

3.45 Issues were also raised for children and young people. For example, one respondent stated that, for paediatric patients, the issue of timing would be important in terms of whether to treat them in holiday or school time (with the issue of the impact on education raised above). It was also suggested in one of the stakeholder meetings that self-management courses provided by the voluntary sector are often not open to children and young people.

3.46 Potential communication (and hence access to services) barriers were identified for deaf people; ethnic minority service users; and people with learning disabilities. There were also seen to be barriers for some people with specific conditions and co-morbid difficulties.

3.47 Suggestions focused on ensuring services meet the needs of these groups, and these are covered in Section 4.

The level of support for provision

3.48 A few respondents highlighted barriers relating to the level of support for provision. These included barriers relating to how the provision would be funded, whether there would be sufficient funding provided and whether there would be ongoing funding. It was also suggested that job security for staff could be a barrier, as could staff attitudes (e.g. unsupportive medical staff).

3.49 Some general suggestions about funding and resource issues were made at various points in respondents' material, and are considered further in Section 5.

Respondents' experiences of residential services

3.50 Questions 8-10 asked about respondents' experiences of residential services outside Scotland. For reference, the questions are set out below:

Question 8: Have you previously attended, or supported someone attending a residential service outside Scotland?

Question 9: If you have attended, or supported someone attending a residential service outside Scotland, please tell us about any advantages and disadvantages of the experience.

Question 10: If you, or someone close to you, has been offered but declined a residential service outside Scotland what were the reasons for this?

Previous use of services

3.51 A total of 23 respondents (10%) to the written consultation indicated that they had previously attended, or supported someone attending a residential service outside Scotland. Most also provided details of the advantages and disadvantages of this. A total of 27 respondents made comments at Question 9 (including a few who did not address Question 8).

3.52 Although a small number stated that they had personal experience of these facilities, most identified that they had knowledge of others' use of the facilities (e.g. through working with them in a professional capacity, or knowing them as a peer). A very small number had been involved as staff in such a facility. In a few cases, the nature of contact was unclear.

3.53 A few respondents gave their reasons for use of the facilities, and these included a lack of services locally and a need to access specialist provision. One respondent stated that local clinicians had sought peer support from clinicians based in Bath.

3.54 Several respondents identified the particular facilities they had attended or had supported someone to attend. These included: Bath; Abingdon Hospital; the Chronic Fatigue Syndrome clinical service in Newcastle; and a spinal unit.

Advantages

3.55 Among advantages of attending these facilities, some respondents highlighted the overall effectiveness of the provision by stating that it had worked well, or that the facility (in this case Bath) was recognised as a centre of good practice. Other general comments included that the patient had had a positive experience, or that there had been a positive impact upon them (e.g. enabling them to manage their pain). One respondent provided personal details of beneficial changes that had been made to their day to day life through attendance at Bath.

3.56 Some of the advantages related to the particular nature of provision available and the support received. A few mentioned the importance of the correct diagnosis having been made, and appropriate treatment having been started (which, in turn was identified as being able to improve functional impairment and quality of life).

3.57 Some aspects of the overall approach adopted were also highlighted as positive, such as:

• An empathetic service.
• Recognition of the problem.
• Honesty and realism.
• Support tailored to the individual needs of the patient.
• A positive environment.
• A consistent message from the pain management team.

3.58 Several comments were made about the benefits of having had access to a specific service. These included general comments about accessing a pain management service, or a service not currently available in Scotland. Comments on more specific issues highlighted the provision of intensive help and support over a greater number of hours, and the residential nature of the provision. A few respondents noted, however, that people with mobility issues would not be able to travel to a programme on a regular basis.

3.59 The opportunity for peer contact and group work support was also highlighted as beneficial. One respondent, for example, stated that they had been able to have contact with people the same age, facing similar issues. The inclusion of, and provision of support to other family members was also highlighted. A few respondents identified the constant availability of healthcare staff, or provision of follow-up telephone contact.

Disadvantages

3.60 The disadvantages highlighted most commonly related to aspects of the nature of provision available, particularly the lack of long term support. For example, a few respondents cited the lack of local support and maintenance, or stressed the need for ongoing support to maintain and sustain the benefits and enable progress to continue.

3.61 One respondent stated that the need to assess patients prior to being sent to Bath, reassess them after the programme, and provide follow-up has implications for resource management and clinical governance. It was also argued that provision of support locally requires joint working between health and a range of services.

3.62 A few respondents stated that transition from a remote specialist centre to home had been poor, with examples of limited communication between the specialist facility and services in the home area.

3.63 A few respondents cited disadvantages in the residential nature of the provision. These including the short duration of the residential programme and the costs. One respondent mentioned a concern about disjointed provision, without adequate communication between the health professionals involved in care. One suggested that patients reported that the demands of the (rehabilitation) programme had been too great, and suggested problems with a "one size fits all" approach.

3.64 Several respondents identified disadvantages relating to distance and travel. These included the general distance from home and support, as well as the length and inconvenience of the journey. A few respondents identified specific problems in travelling from a particular remote area to a service in England. One stated that the need to travel for assessment and follow-up appointments was a disadvantage. It was also argued that some patients who would be suitable for the service are unable to travel. Issues were also raised relating to the costs (and upfront costs) of this.

3.65 A few identified disadvantages relating to gaining access to the service. These included:

• A perceived reluctance to make a referral.
• Difficulties in identifying placements to suit individuals' choice.
• Lengthy waiting time to confirm a patient's acceptance, and a period of uncertainty.

3.66 A few respondents highlighted disadvantages relating to the overall experience (e.g. lack of a positive outcome) or costs and resources (e.g. different funding arrangements in different areas; and a view that this provision was not the best use of resources).

Reasons for declining

3.67 A total of 27 respondents to the written consultation (12%) made comments at Question 10 relating to having been offered but declined a residential service outside Scotland, and the reasons for this. Of these, just under half gave their reasons for having declined such an offer.

3.68 Although few detailed comments were made, the reasons related primarily to the location and distance of the service. The main issue raised was that it had been too far to travel, particularly for people experiencing chronic pain.

3.69 Very small numbers of respondents identified other reasons for declining such a service. These were consistent with some of the barriers identified earlier. Those mentioned included:

• 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).

3.70 Almost half of the respondents who addressed this question stated that they had never been offered such a service, or had been refused this. Additional comments suggested a perceived reluctance by GPs to refer patients (e.g. following a specific request); and a lack of knowledge of such services.

Other comments

3.71 A small number of respondents made other comments at each of these questions about aspects of a service they considered necessary, or the means of taking provision forward. These issues are addressed in Sections 4 and 5.