This blog from Cass Macgregor, Christine Addington, Dr Chris Sockalingam, Dr Hannah Houliston and Dr Helen Alexander outlines their reflections of two NHS Lanarkshire projects that aimed to improve the experience of people with fibromyalgia within NHS services.
People living with Fibromyalgia can feel disbelieved, not listened to, and often experience disjointed care (Doebl et al, 2020). This has been our experience in NHS Lanarkshire with people attending a range of specialities, feeling ‘passed from pillar to post’ without optimal outcomes. There is, however, good scope for Fibromyalgia management to improve by finding ways to align our approaches with recent guidance and adapting our systems to the needs of patients. The new International Classification of Diseases-11 offers clearer recognition of the biopsychosocial nature of Fibromyalgia as a chronic pain condition (Nicholas et al, 2019, Treede et al, 2019). Recent evidence-based recommendations include exercise, cognitive behavioural therapies (a broad category), pharmacological management and advocate shared decision-making with the patient (MacFarlane et al., 2017; SIGN, 2019). NHS Lanarkshire has services which provide these options; however, they are often not coordinated, and access to them has not been straightforward for these patients. Our clinical experience suggests that there is not a ‘one size fits all’ approach that can be used, with patients presenting with different levels of need, different preferences and at different points in their journey.
Fibromyalgia is a classic chronic pain condition where multidisciplinary management is indicated and could be delivered through existing services but often this isn’t the experience of patients. Can this situation be improved so that the NHS fits the needs of this population better?
We delivered two small test of change projects and evaluated each project with input from a Glasgow Caledonian University (GCU) doctoral physiotherapy student. Our first project commenced in January 2020. This included a joint group session with physiotherapy and pharmacy followed by the patients choice of attending physiotherapy, pharmacy and/or a pain rehabilitation course, but this was stopped in March after three group cycles due to Covid-19. Despite this, an evaluation report by a GCU doctoral physiotherapy student provided feedback helpful in shaping Project 2. This evaluation recommended improving information for patients and helping them to develop awareness and clarity on the role of management prior to referral to the group (Houliston, 2020).
Dr Hannah Houliston conducted the service evaluation for project 1 as a GCU student. This was her first experience of conducting a service evaluation within the NHS, and first opportunity to work alongside individuals with Fibromyalgia.
‘The greatest insight I obtained from this project was realising the value of using lived experience to inform service development. The verbal and written feedback obtained during the project represented real people, with real experiences of living with Fibromyalgia, key to understanding how the service was experienced and where development was needed. The evaluation meant that these patients had a platform for their voices to be heard. Not only was I listening, but I ensured that their feedback was reflected in the recommendations generated. Undertaking a service evaluation guided by lived experience has shown me how future services can be tailored to the needs and preferences of those who access them. I believe that this process is particularly important for patient groups that feel they are passed around services without optimal outcomes. Using lived experiences can help guide service development to improve patient experience and their outcomes, and I look forward to implementing this again in the future.
Another key piece of learning I took away from this experience, was the significance of ‘shared decision-making’ between patient and healthcare professional. During this project, a patient expressed they felt to ‘re-gain control’ when given the opportunity to decide on their future management option. This individual
felt that they had lost control of many aspects of their day-to-day life, and that this was a way to regain some of this control. This took me by surprise and has made me re-think how I communicate with patients. I have since explored how I can more actively involve patients in the decision-making process, and I am working towards being less authoritative and prescriptive. I expect this adjustment to my practice will actively involve and empower patients with their own care/management.’
We aimed with our second project to test and evaluate a small multi-disciplinary pathway for people with Fibromyalgia in Primary Care, to improve access to streamlined, evidence-based care. It ran from October 2020 to June 2021 during which time the project team developed the pathway and 18 patients accessed it from one GP practice and was supported by the Modernising Patient Pathways Programme. We centred this project on a joint face to face appointment with a GP and physiotherapist and further offered access to pharmacy, physiotherapy and online self-management options in NHS Lanarkshire. Our intention was to provide enough time in the consultation to build a collaborative way of working and facilitate decision making. We gathered qualitative data from semi-structured interviews to help understand how the project was experienced by both staff (HA) and service users (CA). From the interviews of participants Christine identified themes which included; feeling listened to and understood; developing collaborative relationships with healthcare practitioners; understanding chronic pain mechanisms; having access to resources beyond pharmaceuticals for the first time to develop self-management strategies.
Christine Addington conducted the interviews with patients on project 2 for her GCU service evaluation module.
‘As a physiotherapy student whose mother has a chronic pain condition, I often found myself ‘armouring up’ before embarking on a placement, knowing that I would not last the four weeks without hearing a healthcare professional negatively profiled someone with chronic pain. In response to the inevitable remark, I feel my body freeze. I am a student who is being graded (sometimes by the individual who has made the comment) on my conduct and integration within the team, and these grades impact upon my future. As I feel my blood run cold, I am conscious of this power-dynamic, which acts to keep my voice silent to ‘fit in’. Thus, when the opportunity came along to be involved in a project that was going to support individuals with chronic pain, I felt excited to work with clinicians who were determined to change service delivery for people with chronic pain.
During one-to-one interviews with service users with chronic pain, I got the chance to hear how evidence, and the service users’ unique experiences were being interwoven to create a service in which those I had spoken to felt supported for the first time with respect to their chronic pain. My deep rooted connection with chronic pain meant that I knew the importance of being critically reflective of how my own experiences influenced the interviews and their interpretation. However, this ‘insider’ understanding can help to minimise the distance between the interviewer and participant. Through a process of reflexive journaling, I came to better understand what it was about this new service that made it successful and what areas would be important for future progression. This process also allowed me a space to heal. I feel this project took an important step towards meeting the needs of these individuals and in the future might prevent other students in similar positions to myself from feeling that they should hide their lived experiences.'
Dr Helen Alexander - service evaluation manager in NHS Lanarkshire and in addition to offering support and advice to both projects, conducted the staff interviews and evaluation for project 2.
‘Reflecting on my evaluation work, the main thing that struck me was how much the project team had gelled. They all spoke freely about each other in very respectful terms, which showed how much they valued one another’s input. It felt like they had all gained a considerable understanding of the unique skills each
member of the team brought to the collective effort and I think that set the tone for their interactions. Those who were healthcare professionals were probably used to working with peers in an atmosphere of mutual respect (although I suspect that is never universal) but it felt quite different for the expert patient representative. Their input seemed to be more highly valued in this project compared to some previous experiences and may have helped to ground the work in a very patient-centred way. Although everyone in the project team was highly skilled, experienced and open to being challenged, it felt to me like the working relationships they had developed made the whole more than a sum of the parts. How, or even if, this can be replicated moving forward will be a difficult question to navigate.
Dr Chris Sockalingam - involved in the development of both projects and as a GP jointly delivered care on project 2:
"An early recurring theme from this project was that participants wanted to be heard, believed and validated. Most participants felt that, in their journey with fibromyalgia so far, this had been lacking. The project design helped facilitate this by allowing time (up to 60 minutes), and through dual consultation with a physiotherapist and doctor, a dynamic and meaningful discussion could be had.
Whilst I could focus on traditional outcomes (for example initial education, progression of management plans, or reduction in poly pharmacy etc), I believe that an accelerated move towards ‘acceptance’ occurred, and this was an unintended positive outcome (i.e. acceptance of fibromyalgia as a long term condition, acceptance that a cure was unlikely, and that living well with chronic pain was a more realistic and desirable outcome).
While the concept of acceptance is not new, and is an ideal outcome of a traditional pain management programme, it was felt that the participants arrived at that outcome earlier in their journey. This acceleration in transition towards acceptance is what I conclude to be the most powerful outcome of this project, and I believe that the extended dual consultation model was one of the key attributes in achieving this."
We have used the two projects to build relationships in NHS Lanarkshire, and have shown the potential benefit of collaborative working and giving patients time with the right professionals at the start of the journey. We are currently hoping to develop this project by using our learning from the projects together with perspectives of service users and people living with Fibromyalgia to develop a larger piece of work and both understand the experience and test the effectiveness of this. The project reports can be viewed on The Open Science Framework project page and have clearance from the NHSL physiotherapy head of department and informed consent gathered from patients and staff to share the anonymised data.
Christine Addington is a Doctoral Physiotherapy student at Glasgow Caledonian University
Dr Chris Sockalingam is a GP Partner at the Clyde View Medical Practice, Wishaw, with special interest in Chronic Pain, and Chairperson of the Lanarkshire Chronic Pain Service Improvement Group.
Dr Helen Alexander is the Evaluation Manager at NHS Lanarkshire.
Dr Hannah Houliston is a Research Physiotherapist at the London Spinal Cord Injury Centre, and Doctorate of Physiotherapy Graduate from Glasgow Caledonian University. Twitter: @HannahHouliston
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