Of 34 patients, 22 (65%) consented to be contacted about an interview. Two declined to be contacted (one had ‘too many things to cope with’ and one was ‘too ill’) and one was not invited because of mental health problems. Nine were not asked for permission to be contacted as data collection had finished. Two patients who agreed to be contacted were not invited as adequate data had been collected to understand experiences of the service.56 In total, 20 patients were invited to participate, of whom 18 agreed and two did not respond, giving a 90% recruitment rate. Participant characteristics are presented in Table 1 and details of the entire cohort are available from the authors on request.
Experiences of the new service
Enrolment into the service
The ORAT tool was found difficult to use and insensitive, generating large numbers of records for the project workers to screen and discuss with GPs. Instead, GPs’ direct referrals were regarded as more efficient.
The invitation process was acceptable to most patients as referral was experienced as informal, quick, and easy. Most patients described receiving clear invitations from GPs during consultations and via letters. GP endorsement enhanced the perceived trustworthiness of the service and encouraged participation. In contrast, one patient negatively experienced a verbal invitation from their GP as the GP implied the intention was to stop their opioid prescription. Another reacted negatively to the mention of the organisation, BAT, in the invitation materials:
‘It [invitation letter] said it was called BAT, Battling Against Tranquillisers … that did sort of really upset me because I think battling against tranquillisers is someone who’s using them as an addictive thing and I wasn’t using them because I was addicted. I was using them to combat pain so I could continue a semi-normal life. … The doctors have been readily giving out these prescriptions, so if anyone’s battling against tranquillisers it’s the doctors.‘
(Patient [P], interview [I] 21)
Assessment process and pain management plan development
Project workers described the assessment process as building a relationship with patients, enabling them to understand their lives and identify issues affecting them and their pain. Most patients found the assessment process acceptable:
‘Straight from the off he [project worker] is not sort of judging you if you know what I mean? He’s sort of understanding what’s going on and … some of the things he said then made sense to me.’
(P, I8)
Within-session components
Project workers used a range of strategies including encouraging pacing, physical exercises, following a pain management book, mindfulness and relaxation exercises, and goal setting. The proportion of all patients (not only those interviewed) receiving each within-session intervention (Figure 2) was as follows: pain management book (74%), OAD worksheets (71%), de-scripting (62%), exercise planning (53%), and sleep hygiene (50%).
Figure 2. Proportion of patients accessing within-session components.
OAD = opioid analgesic dependence.
Pain management strategies
Patients learnt about pacing and strategies for avoiding the ‘over-activity trap’: the perceived need to complete many tasks on ‘good pain days’ that contribute to subsequent ‘bad pain days’:
‘First of all, it was just sort of talking and then it was coping strategies, pacing — I’m not good at pacing — if I have a good day … I try and get everything done and am then knocked out for a couple of days but now I’ve learnt to I’ll perhaps iron a couple of things and then I’ll sit down rather than stand there and do the whole lot.‘
(P, I1)
Several patients described the pain management book and accompanying relaxation CD as helpful, informative, and relatable. A small number described using the book to help formulate goals as well as using it outside of sessions. However, others described difficulties concentrating on the book, and some parts were said to be irrelevant and to oversimplify CNCP:
‘… and the little books were brilliant because you do feel that you’re on your own, that nobody else sort of understands, and my husband’s read it, and … you think, “Oh yeah, that’s me, that’s me”, so yeah, it was really interesting.’
(P, I12)
‘I got sort of irritated by [the book] and … I tried my best to sort of have an open mind with it but I just really didn’t like it. It’s very rigid as well and you know, well I found it rigid.’
(P, I9)
Opioid review and changes
Some patients were keen to conduct a review of their medication and to reduce their dose or change the type of opioid, driven by a recognition that they were on a high dose, or wanted to reduce the side effects from their medication. Overall, GPs facilitating changes to prescriptions worked smoothly, though time delays were experienced by some. A small number of patients had reservations about reducing their dose at home, rather than as a hospital in-patient, because of fears about withdrawal symptoms:
‘We would talk for quite a long time about the withdrawal and in the beginning, I was really scared and I said “Well, there’s no way I am doing it unless you can send me to somewhere where I can actually live in and sort of you know?“ But, we sort of discussed that and then I sort of thought “Well, no, I think I can do it with his help and support.”’
(P, I9)
Community-based services
The highest proportion of patients selected physiotherapy services and participation in a relaxation group (53% respectively) (Figure 3). Other community-based social prescribing services focused on: quality of life; social interaction and self-esteem through voluntary work; applying for an assistance dog; a ‘Men in Sheds’ project (community spaces for men to connect to help reduce loneliness and isolation); physical activity, for example, gym sessions; and financial advice and support, for example, personal independence payment claim support and working rights advice:
‘He really helped me with that [applying for an assistance dog] because again, with my confidence I was reluctant to sort of ring them up … and he was like “No, you do it” and I did.‘
(P, I9)
Figure 3. Proportion of patients accessing community-based services and social prescribing.
OAD = opioid analgesic dependence.
Three patients talked about appreciating funding to access community services. A small number of patients and project workers described delays accessing some services, owing to long waiting lists.
The project workers and some patients described enjoying the relaxation group, finding it helpful and valuing connecting with others in a similar situation. Group attendance was variable, and two patients were unable to attend because the group ran during the working day. A small number of patients were intimidated by the group format and did not feel confident to attend:
‘At first, I hated the breathing … I think a lot of that was to do with my confidence as well because I felt very self-conscious in the group, breathing with other people, and I think a few people probably felt it but I vocalised it and they were all really supportive … but when I came home, obviously what I learnt there, I was able to practise here and I felt more comfortable.‘
(P, I9)
Service approach
Patient-centred counselling
Session day, time, frequency, content, pace, and location were selected and modified to suit patient needs. Service duration was also more open ended than previous services, running for a maximum of 2 years. Patients liked this approach because it was more person centred than other services and reduced the pressure on them to make lifestyle or medication dose changes within a set timeframe. A few patients talked about their partners, parents, or carers attending some or all sessions that offered them insights into what the patient was experiencing, enabling them to support the patients, and helped the patient recall what had been discussed.
Patients appreciated that the service was not like the traditional medical model or mental health and pain management services. All interviewee groups reported that patients valued having time to discuss their pain and its management with someone who could spend time listening to them. Patients and providers acknowledged that GPs do not have time to discuss pain management or reduction in medication in detail, owing to limited appointment times:
‘It was one-on-one as well and it wasn’t rushed. If you had something to say he would just sit there or advise or listen.‘
(P, I21)
Relationships and communication
Project workers and GPs described the importance of forming a trusting relationship with patients in supporting openness during the sessions, and willingness to try suggested strategies. Patients described the project workers as encouraging, motivating, kind, and good listeners. They provided advice and supported them to implement changes related to pain management in a gentle way. The continuity of the project worker was experienced positively. Communicating confidentially with someone who was non-judgemental, understood the physiology and psychology of pain, empathised with their experience, and was outside of the immediate family or caring network was welcomed:
‘I’m enjoying the fact that I’ve got somebody outside of my immediate family that I can just chat to that understands what I’m going through and can sort of guide me, you know, as to how to move forward and try and avoid painful flare-ups.‘
(P, I14)
Project workers consulted with GPs about opioid reductions and changes to patient medication, and kept GPs updated about the sessions through written notes on patient records and an internal messaging system. Most GPs felt this method of communication worked well, and project worker liaison with GPs was viewed positively by most patients. Project workers who were based in the GP practice facilitated informal conversations with GPs. Two patients commented on the sense of safety and reassurance that GP involvement provided for them:
‘Within EMIS [patient administration system] you can send tasks to users and so he [project worker] can send a task about a specific patient, saying I’ve seen him today. Certainly, when he starts dose reduction, he’ll tell you what he’s doing, and he’ll put the plan on the record. It’s helpful to have a summary of what he’s doing with people.‘
(GP, I20)
A small number of patients experienced communication problems with the GP or project worker. For example, one patient was refused appointments with their GP as they were under the care of the project worker. Instead, the GP and project worker discussed the patient’s care without them. This patient disliked not being present for these conversations and having access to the GP restricted. Other patients also wanted more support from the GP during the service, especially when reducing opioids, for example, one patient felt more clinical expertise and general support from a GP was needed:
‘I think it is important if you’re reducing that you are, I mean not to get special treatment, but you are able to have access to a doctor, even if it’s just a phone call to say, you know, can you help me.‘
(P, I9)
One GP described supporting patients when they were reducing their opioids through phone calls and house visits. The lead GPs described struggling to allocate time to support the project workers as their time was unfunded. A lack of clinical supervision left the project workers feeling inadequately supported at times.
Scheduling multidisciplinary meetings between GPs, project workers, and addiction or pain specialists was difficult, and the involvement of the psychiatrist and pain specialist consultant was less than anticipated. The project workers were disappointed by this and felt that delayed responses from specialists negatively affected the patients’ confidence in their knowledge and ability to support them.
Focus on wellbeing and mental health
All participant groups described the service as supportive of improvements in patient wellbeing and providing support for complex social and psychological issues, including social isolation, bereavement, problems related to family life, finances and employment, histories of trauma and abuse, low self-esteem and confidence, anxiety, and depression. Such issues had become intrinsically linked to CNCP either as a cause, contributor, or consequence. Project workers described trying to address patients’ negative self-image by encouraging self-kindness.
Project workers observed that opioids were used by some people for reasons other than pain management, such as sedation and management of psychological symptoms:
‘For some people if you track over a week how they’re taking it, then you can kind of see patterns that don’t correspond with pain spikes. So, people are using it for something else and there’ve been a couple of “aha” moments with clients where they’ve gone “oh right, yes it goes up when my horrible father comes and gives me [hell]” and someone going “yes, I sedate myself”.’
(Project worker 1, I13)
A self-assessment worksheet helped patients identify patterns of opioid use coinciding with stressful periods rather than pain spikes, thus increasing self-awareness of the link between wellbeing and pain. A negative unintended consequence of discussing the relationship between the mind and pain was for a small number of patients to think the project worker was implying their pain was not ‘real’:
‘In the research [there is a] huge overlap between kind of your emotional state and the amount of pain you feel. Also, around your ability to kind of tolerate the frustrations of pain. If you’re not in a good space, you’re not gonna be able to do that. If you’re not in a good space, the chances are you’re gonna be at home. If you’re at home you’re not working, you’re not going to feel good about yourself. If you’re not kind of working your body’s gonna start moving less so there’s this … horrible … downward spiral.‘
(Project worker 1, I13)
Two patients thought the pace of moving onto certain aspects, such as looking at their hobbies or starting to consider reducing their medication, would be discussed earlier on, but they acknowledged the need to address other mental health-related issues first to ensure they were ready. Indeed, setting goals was described by a small number of patients and Project worker 2 as challenging because of psychological readiness, emotional state, and general struggle to commit to setting goals.
For example, confronting troubling issues including past trauma was difficult for some:
‘In the early days I did find it quite difficult because when you’re talking about your pain and your lifestyle, it’s just highlighting how bad you feel.‘
(P, I2)
Factors to consider for service development
Most GPs and patients made no critical comments about the service and nine patients wanted the service to be kept the same in future. Keeping the service person centred and not prescriptive was viewed as important. Maintaining a long-term approach was desired by patients and project workers as CNCP is a complex issue that takes time to address, and requires a trusting relationship with the project worker.
There was agreement among the GPs and project workers that identifying eligible patients using clinician knowledge rather than software should continue. To enhance its effectiveness, two GPs proposed that the service could target patients who have expressed concern about their opioid use and motivation to change. GPs also commented that this type of service could be used to support patients from the onset of a pain condition to prevent long-term opioid use. Indeed, two patients talked about being unaware of their medication’s addictive properties when first prescribed.
The project worker–patient relationship was perceived to be crucial for ensuring the success of any future service. However, the importance of commissioning a service rather than employing individual project workers was recognised. Both project workers warned against running the service with high numbers of patients and short appointment times, as this would undermine the ability to form a therapeutic relationship.
GPs highlighted the need for funding to support their involvement in future. Similarly, continuing a budget for each patient was recommended.
All participant groups agreed that running the service within GP practices was important in terms of access, communication, and familiarity. Additionally, one project worker felt the service could be embedded within the pain management pathway offering services within the community either before or after engagement with pain management clinics.
