As healthcare services battle with the lasting challenges of COVID, the backlog of patients spanning more than a year, and the increasing concern over lack of chronic pain understanding, a critical analysis of the UK’s rheumatology services has unanimously revealed a more collaborative approach will have the greatest benefit for patients.
In Connect Health’s latest Change webinar, leading healthcare experts explored the opportunities and challenges of community rheumatology services, looking through the lens of the patient, consultant rheumatologist, rheumatology nurse, community care commissioner, and GP.
The event was chaired by Dr Krisztina Szabo-Kocsis, Consultant Rheumatologist at South West Essex Community Rheumatology Service, Connect Health.
She welcomed guest speaker, Fen Kipley, a pain advocate living with fibromyalgia, seronegative inflammatory arthritis, and hypermobility syndrome.
Offering a patient perspective, Fen described her life-changing battle for correct diagnoses and gave insights into the ‘trial-and-error’ way of working that is currently upheld within some aspects of rheumatology services.
Everyone’s journey is different. How they’re treated depends on the complexity of their condition, what system is in place, and the attitude and experience of the healthcare team. For me, it felt like being handed a life sentence.
Prescribed a wide concoction of pain and anti-inflammatory medication over almost a decade of health challenges, Fen praised the support of services including physios, OTs, and Flippin’ Pain™, saying:
I could only cope with the horrendous stresses of a trial-and-error rheumatology system because of a knowledgeable physio and the Flippin’ Pain team. In my opinion, these services should not be called ‘secondary care’ – they were literally emergency services as far as I was concerned, and they helped me deal with the frustrations of daily living. They were critical in stopping me from giving up and they encouraged me to fight for the right healthcare – they saved my life.
The best thing for me was being discharged from my local pain service, because 20% of patients did not respond to their methods. I transferred to another hospital where a mindfulness approach was being adopted. This helped me experiment with holistic methods and I learnt that fibromyalgia is easier to manage through self-awareness and by doing things instead of avoiding them – such as gentle exercises, pacing, and engaging in activities that you enjoy. These things helped me survive my pain, rather than be a victim of it.
When asked, from a patient’s perspective, what could be done to improve the overall delivery of rheumatology services, Fen emphasised the life-long implications people deal with.
I think if you’re a healthcare professional, keep up to date with guidelines and the latest research, especially relating to pain. Consider incorporating best practise models into your specialism. Listen to patients – and I mean really listen – we do know what we’re talking about. Ask positive questions, such as ‘what do you want to achieve in terms of better wellbeing?’. Offer alternatives to medication and jointly agree a way forward.
Most importantly, get OT, physio, and rheumatology nurses, out of the hospital and working together in accessible community hubs, alongside podiatry, orthotics, mental health, and pharmacy provision – this would help deliver holistic healthcare for rheumatological conditions that are life affirming, rather than feeling like a life sentence.
Providing the nurses viewpoint, discussing waiting lists and providing equitable services was Maria Cunningham, Rheumatology Clinical Nurse Specialist at Herts Valley Integrated Musculoskeletal (MSK) Service.
‘We relieve pressure from rheumatology secondary care”, Maria explained, ”we facilitate an easily accessible service by complementing the care provided by GPs and hospital consultants, by offering regular treatment and monitoring closer to home.
Exploring the national picture of MSK care, Maria highlighted how recent data shows that MSK conditions affect approximately 9.6 million of adults in the UK.
The MSK clinical review and triage services reduce demand on local secondary care services – they have the potential to reduce referrals by 20 to 30% (equivalent to 2-3% of all GP referrals).
Offering rapid and flexible access to care through an effective triage system, and in collaboration with other healthcare professionals, provides better care for patients, explains Maria. She added:
We work collaboratively with doctors, allied health professionals, physios, our pain team, and other colleagues, to manage rheumatological conditions in patients. By reducing waiting times, we improve patient experience, and we encourage a two-way communication between both primary and secondary care.
When considering the future of rheumatology services, Maria stated:
I think we’d all agree that we must invest in the education of rheumatology nurse specialists in order to avoid crisis in care of patients with lifelong painful and debilitating conditions.
Dr Louise Warburton, GPwSI Rheumatology; senior lecturer at Keele University and Associate Medical Director at Shropshire Community Health NHS Trust delivered a primary and community care perspective and explored how healthcare professionals can learn from advancements in other sectors.
Considering regional MSK support, Dr Warburton said:
There’s been a long history of musculoskeletal redesign in Shropshire and we’re now a fully integrated service.
Rheumatologists work in close cooperation with us, so we have conversations about where the best place is for a person to be seen. When the integrated service started in 2015, I was conscious that there was quite a good service for people with inflammatory arthritis, but anyone with a condition that was slightly harder to define, such as OA or some aspects of fibromyalgia, were being dismissed without any support or treatment.
Exploring the processes in place, and what work still needs to be done, Dr Warburton said:
Having worked in this service and as the clinical lead for six years, a really robust clinical triage system is important. You have to adequately resource that time and you can’t expect people to be triaging referrals in between seeing face-to-face patients. By doing this, we ensure that the right person is seen in the right place at the right time.
Questioned on what benefits a patient expect from an integrated MSK service, Dr Warburton explained:
We know some patients were being told they didn’t have inflammatory arthritis and were therefore discharged without any support or help. Because we all work virtually in the same building, there’s lots of conversations going on about supporting people and who would be the best person to help this patient. Being integrated has really benefitted our patients.
Agreeing with this collaborative approach, discussion-lead Dr Krisztina Szabo-Kocsis said:
It’s highlighting again this integrated way of working together – pain physios, OTs, and other clinicians, together in the community – it’s much easier in that environment.
Discussing the benefits and challenges of community and secondary care provision was Dr Benjamin Ellis, Consultant Rheumatologist and Head of Specialty at Imperial College Healthcare NHS Trust in London.
Dr Ellis explained:
People with long-term physical and mental health conditions, which is a big chunk of the population, often fall into the cracks – on one hand, they don’t necessarily require specialist care in a specialist setting, but on the other hand, their conditions are often not particularly well recognised or supported in primary care.
We know that high-impact chronic pain – that’s chronic pain which is very disabling – affects perhaps one in eight people in the UK. However, if you look at the policies around primary care and the practises and the incentives, you’d more or less think this group didn’t exist.
Addressing the challenges of traditional care systems, Dr Ellis said:
Through a personalised care approach, we want to improve health and wellbeing and address health inequalities. We want to see everyone’s needs being met, not just their physical needs, but their social and psychological needs as well.
We’ve heard from patients that they value having the time to talk. They want to feel listened to, believed and not judged for the symptoms they’re discussing. We discuss self-management as if people are islands – none of us are islands and we live and work in communities. We want to be connected and that’s what healthcare needs to be about, creating interdependence within the local community.
During a Q&A session led by Dr Krisztina Szabo-Kocsis, all participants were asked what one thing they would change in rheumatology services.
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Fen Kipley:
Get people out of the hospital setting and into a community hub, where there is an integrated service where people aren’t waiting for months to see somebody. Don’t medicalise it. I know it’s a medical condition, but don’t medicalise it. It’s a lifestyle, it’s a life problem and it needs dealing with holistically.
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Maria Cunningham:
Stable patients don’t need to be seen in secondary care; they can be reviewed in the community. A good triage system in place will benefit patients in an immense way.
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Dr Louise Warburton:
We’re trying hard to keep the rheumatologists seeing patients who they really need to see. We have recruitment problems, and the waiting lists are now worse following COVID.
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Dr Benjamin Ellis:
If we want to improve the MSK health of the population, we must go where the population is, which is in primary care. If specialists in community or hospital services say we haven’t got time to support primary care so they can support people with chronic pain, I would say we haven’t got time not to. We must put the time into supporting primary care doing their heroic and fantastic job to support people with chronic pain living in the community.
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