The Future of Managing Rheumatology Conditions in the Community – Q&A Summary
Webinar Blog and Q&A summary, 27 May 12:30-13:45
Connect Health “Change” brings you the twelfth in a series of webinars to make and embed transformation in healthcare. Aimed at system leaders and clinicians across the NHS, the webinars provide practical solutions to the challenging issues we are all grappling with.
During this webinar, senior clinicians, system leaders, patients and experts debated the future of managing rheumatology conditions in the community.
The webinar covered:
- The benefits and challenges of community and secondary care provision
- What community rheumatology could learn from advancements in other community services over the last decade
- Rheumatology through the lens of the patient, consultant rheumatologist, rheumatology nurse, community care, commissioner and GP
- Battling waiting lists and providing equitable services
Watch the Webinar in Full
Q&A
Chaired by:
Dr Krisztina Szabo-Kocsis, Consultant Rheumatologist, South West Essex Community Rheumatology Service, Connect Health
Fen Kipley – Surviving pain advocate, living with fibromyalgia, seronegative inflammatory arthritis and hypermobility syndrome
Question 1: From a patient’s perspective, what do you think could improve the overall delivery of rheumatology services?
Answer: That’s a big question, I have a few points. If you’re a healthcare professional, keep up to date with guidelines and the latest research, especially relating to pain. Consider incorporating best practice models into your specialism. Listen to patients (and I mean really listen, we do know what we’re talking about, honestly!) Ask positive questions, such as, “what do you want to achieve in terms of better well-being?” Offer alternatives to medication and jointly agree a way forward. Most importantly get OT, physio and the 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.
Question 2: I like your idea of asking positive questions, can you give me an example?
Answer: Yeah! One of the things that most people are ready to do when they go into the doctors is perhaps just list the stream of how awful they’re feeling, which of course, is what it’s for, for the first initial consultation. As Benjamin has just said, it’s very difficult to get all that down and sometimes, it’s actually better for the clinician to actually say ‘How can we work through this together?’ ‘Where do you want to be in terms of your care?’ ‘What can we jointly agree with this?’
Part of that conversation is maybe to help them focus on actually what they like doing. In my experience, what we tend to do when we are living with pain 24/7, we focus on the negative and it’s really hard to remember all those things you used to enjoy. You usually lose your identity very quickly, particularly if you have to give up work and social occasions. Tipping it around into positive things that say ‘let’s do this together!’ ‘What can we do while we’re helping you to get a referral?’ ‘What are the things that you like doing?’ If anybody has the time, or the inclination if they do look up ‘The power of the positive question and appreciative inquiry’ [1], it’s a really interesting method of tipping negative situations into positive situations, without ignoring the problem.
Question 3: Was there any specific treatment that you found helpful from a physio perspective? Did you do groupwork or aquatic therapy?
Answer: I didn’t do group work. I was really fortunate that the physio I saw, really did know her stuff. She sat me down and she just looked me up and down and said ‘why are you holding your head that way?’ and I said ‘what do you mean?’ Apparently, I’ve been holding my head to the left for a very long time and it completely affected my whole posture, even how I walked.
She put me in the gym between the two bars, (they look like ballet bars,) she put me on a wobble board and asked me walk up the stairs.
What she really did for me was teach me how to walk properly, how to keep all my limbs loose and I don’t know if you’ve ever seen the advert Mr Soft it was about soft sweets and all the things in the street, including the person was walking and being loose with their limbs and just taking it steady and sort of bouncing along in a buoyant way. That gave my confidence back. One of the important things is, when you’re in a lot of pain, you don’t make eye contact with people and you put your head down – usually to make sure you don’t trip over anything. You’re so worried about damaging yourself that you end up protecting yourself too much and holding yourself tense. All of the physios will know it is the worst thing to do, so I learnt to put my head up and look forward. I can’t thank Carol Thacker enough, she was brilliant.
Question 4: What is your expectation as a patient with a long history of chronic pain when you attend an appt at the GP practice. I am a new FCP in GP practice and finding the consultations with patients with chronic pain challenging.
Answer: I was lucky that my GP has actually known me since I was 18, but for others I realise it’s a challenging situation and obviously many times people have plucked up courage to come with the issue because it can’t be seen and they’ve probably got family issues at home, where they can’t talk to people about it. People misunderstand when you’re tired, you’ve got fatigue and you look fine, ‘why is there a problem?. You don’t have enough time in 10 minutes to get to the bottom of it. So, hear what the patient is saying, perhaps ask them to keep a pain diary for a month. That includes: their exercise plan, what they like doing, what they like to eat, how much rest they get. Then invite them back in a month and say ‘okay, let’s work through this together’… ‘We can see the peaks and troughs’ Then, ‘clearly you’re doing this okay’. It gives you both an idea of something to work on, to build a working relationship, which is what you want. Then together decide the way forward, whether that’s in secondary care or through some other means.
Question 5: What is the one thing you would change about the rheumatology system?
Answer: Get the people out of the hospital and into a community hub where there is an integrated service, so they are not waiting for months and months to see someone.
Dr Louise Warburton – GPwSI Rheumatology; senior lecturer Keele University, Associate Medical Director, Shropshire Community Health NHS Trust
Question 1: What are the advantages for your patients in attending a fully integrated MSK Service rather than simply a Rheumatology clinic?
Answer: When I was first setting up this service, with a lot of help, I was really conscious that patients who were being seen in the acute trust by the rheumatologist were being told that they didn’t have inflammatory arthritis, therefore they were discharged without any support or help. We all work virtually in the same building, so there’s lots of conversations going on about supporting people and who would be the best person to help this patient, so that has been a real benefit to our patients.
Question 2: Do you manage inflammatory patients in your service and do they stay with you as stable patients instead of sending to secondary care?
Answer: No I don’t personally, because we’re working with two consultant rheumatologists. I might detect that someone has inflammatory arthritis, but the triage process would aim to get those people in front of a rheumatologist first.; I scan some people and I might find that they’ve got rheumatoid arthritis but I wouldn’t start them on a disease-modifying drug. I used to do that in the hospital clinic but I don’t anymore. I tend to manage the patients who’ve got non-inflammatory disease.
Question 3: Triaging seems key- would you share your services’ triage criteria?
Answer: We use all the NICE guidelines. For example, the early arthritis pathway is entirely based on the NICE quality standards, for getting people in front of a rheumatologist within two weeks. We’ve built them up around the evidence that’s out there, and you have to consider your own local health economy. If we don’t have a spinal surgeon on this side of the county, we have to be very sure that patients who are triaging and see a spinal surgeon, really need to see a spinal surgeon. There’s always been a communication pathway so people receiving the referrals at the first stage, can ask people who are more experienced or know more about rheumatology, what to do with a particular patient.
Question 4: Do you have training for your colleagues for triaging?
Answer: Yes, I probably do most of that but we have team meetings and we all learn from each other, discussing particular problematic referrals. The main problems we’re having at the moment, is due to COVID-19, people are not being seen face-to-face. We might be getting referrals from FCP’s or physio saying ‘this patient’s got neck pain, can you see them’ without there being an assessment performed in primary care. We’re having to push back a bit on that because now the restrictions are somewhat eased, we would like patients to be examined before they are referred.
Question 5: What is the one thing you would change about the rheumatology system?
Answer:We’re trying hard to keep the rheumatologist seeing patients who they really need to see. They are still following up with all of their patients on DMARDs with a nursing team. We have recruitment problems and we are two or three consultants down and one or two nurses. Our main problem across the county is the waiting list and it’s now worse following COVID-19. More staff are needed and moving some of those follow-up patients out into the community so that people like me could see them would help too.
Dr Benjamin Ellis – Consultant Rheumatologist and Head of Specialty at Imperial College Healthcare NHS Trust in London.
View a video of Benjamin’s talk
Question 1: What’s the role for community MSK services in supporting this work?
Answer: It’s a really good question because this is about supporting people who are remaining in primary care. That’s not to say there isn’t a role in terms of, diagnosis, pain management programmes and other things such as people leaving primary care for a period and doing something somewhere else before they come back to primary care.
We need to see how the two will integrate together but there’s a huge missing piece at the moment that people might come into a community MSK service, have some support for a time but then they come back to their general practice which isn’t equipped for the ongoing support that people need. Actually embedding it in primary care, means we’ll be able to get these sorts of services to a far greater group of people. The continuity over the course of the many, many years people will live with these conditions is something that a community service, hospital service or a service outside of the primary care network would struggle to provide. We need to understand the role that both can play and I’m sure there is a role for both in this.
Question 2: Where should pain management programmes sit?
Answer: Pain management programmes definitely have some role. I want to say two things. Firstly, there is some uncertainty about pain management programmes being raised by the NICE guideline for chronic primary pain.
That creates a question about exactly what should be available and at the moment in the absence of clear guidelines, every area is having to work that out for itself. Some people benefit from pain management programmes given the sheer number of people with chronic pain who are struggling – and we know there are millions in the country.. We need to focus on enhancing and supporting the other parts of the system, then understanding where pain management programmes fit in. Many people want to explore the physical activity part.
Question 3: How do you address the patient’s feeling that they need more investigations and that something has been missed, especially in the case of some patients with fibromyalgia who are struggling to accept they have the condition? I find it can be a big cause of the “pin balling” among different health services. I really like the sound of the personalised care approach though and I think this would be very valuable in our area.
Answer: Thinking about Fen’s presentation earlier, the story that she shared. People with fibromyalgia do also develop other problems. Again if people haven’t had a chance to read the NICE guideline, emphasising that if someone has a flare up remembering to go back and take another history of the flare and examine again.
People with fibromyalgia can get cauda equina syndrome and everything that everybody else gets, so that is a really important point to emphasise. Giving people more time, really hearing people’s stories and listening carefully and doing a careful clinical examination is key. It’s how we were trained to work and is absolutely critical to making a diagnosis early on. For example, in initial consultations about their chronic pain, saying to them, ‘I think you might have fibromyalgia’ and explaining a bit about what it is and then saying what tests you think are necessary to exclude things
There are a small number of tests that you might do and the pressure for tests comes from people feeling they haven’t been taken seriously. If we take people seriously and we give them the time I think that happens less. We have to use our clinical experience and make shared decisions. If someone’s saying, I’m really worried that I might have cancer because my mother had bone cancer and this is why I’m really worried. . If people have got that anchoring diagnosis of fibromyalgia at the beginning, there is almost always less of the pinballing unless there are repeated consultations in primary care because the anxiety level is so high.
Question 4: Question for all HIPS presenting: have you got links with charities who support people with arthritis and MSK conditions? We can really help with self-management, peer support, mental health, information about conditions, treatment etc.
Answer: Versus Arthritis is excellent for all these and offer a professional network for training clinicians.
Question 5: What is the one thing you would change about the rheumatology system?
Answer: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.
Watch the webinar again, which includes further insight from the speakers including a full Q&A session, and read more about the speakers here:
Wednesday 26 May 2021
View our speakers’ biographies
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