Ep 22. INNOVATORS - Championing change in axial SpA care - the NASS Changemakers

Meet the NASS Changemakers

In the second of the INNOVATOR series, host Dr Lizzy MacPhie talks to guests as they discuss three award-winning projects, working between primary and secondary care to improve diagnosis and management for people with inflammatory back pain. With varying size projects, led by different members of the MDT,  there’s something for everyone in this pod. Prepare to be inspired!

Today also marks NASS launching the second round of the Change Maker awards to further recognise healthcare professionals improving diagnostic delay in axial SpA. You can read more about round two including eligibility criteria and the application process by visiting: https://www.actonaxialspa.com/act-on-axial-spa-change-maker-awards/

Our guests include:

Dr Antoni Chan, from Royal Berkshire, a consultant rheumatologist who won a Gold NASS Changemaker Award for his work on the Rheumatology Acadamy and Collaborative Network (RheumACaN) and delivering a gold standard time to diagnosis. PLUS, Dr Chan was also part of the Royal Berkshire NHS Trust team recognised for their outstanding achievement in winning the BSR Best Practice Award 2024. 

James Holland, first contact practitioner (FCP) at Viaduct Care in Stockport, a NASS Champion in Primary Care who won a silver award for his work on local pathways, education and implementation of electronic triage tools.

Niamh Kennedy an advanced practice practitioner (APP) from Belfast Health & Social Care Trust, who won a bronze award for setting up a new early back pain clinic, leading education and implementing a new inflammatory back pain pathway.

Thanks for listening to Talking Rheumatology! Join the conversation on X using #TalkingRheum or tweet us @RheumatologyUK.

BSR is the UK's leading specialist medical society for rheumatology and MSK health professionals. To discover how we can support you in delivering the best care for your patients, visit our website.

Transcript

Voiceover: You’re listening to Talking Rheumatology, brought to you by the British Society for Rheumatology.  

Lizzy Macphie: Hello and welcome to this special series of Talking Rheumatology, where we’re focusing on rheumatology innovators. I’m Lizzy Macphie, consultant rheumatologist and quality improvement enthusiast, and over the next year I’ll be meeting some fantastic members of our rheumatology community to find out more about their examples of best practice.

 Lizzy Macphie:   0:10
 So this week I'm talking to three winners of the prestigious NASS Change Makers Awards. Recognising the work they have done to improve diagnostic delay for people with axial spondyloarthritis, so it's fantastic today to welcome Toni Chan, James Holland and Niamh Kennedy to this podcast to talk us through their projects. So we're going to start with a quick round of quick-fire questions to get to know our guests. So, questions first to our panel. So, what's your current job role and organisation? So Toni coming to you first.

Antoni Chan   0:49
 Hello, I'm Antoni Chan. I'm a consultant rheumatologist and also clinical lead at the Royal Berkshire Hospital in Reading.

Lizzy Macphie:   0:57
 Fantastic. Welcome, James.

James Holland   1:25
 So my name's James Holland. I'm a first-contact physiotherapist. I work for Viaduct Care in Stockport.

Lizzy Macphie:   1:34
 Fantastic, and welcome as well. And finally Niamh.

Niamh Kennedy 1:38
Good morning. I work as an advanced practice physiotherapist and I'm in the Belfast Trust in Northern Ireland.

Lizzy Macphie:   1:49. 

Well, welcome to you all. I'm really looking forward to hearing about your projects today. So my next question to each of you is how long have you worked in rheumatology and do you have a special interest? So coming back to you, Toni?

Antoni Chan   2:03
 I've been in rheumatology first as a trainee and then as a consultant, and this is actually my 25th year in rheumatology, so it's a great time to do a podcast. With regards to interests, I think you mean rheumatology, so that will be that will be axial SpA.

Lizzy Macphie:   2:18
 Fantastic. And James.

James Holland   2:21
 So I've actually never worked in rheumatology. I've been a physiotherapist for 17 years and been working as a first-contact physiotherapist for nearly six years now. But just saw a nice gap within primary care to do a quality improvement project in axSpA. Specialist interest - obviously we're quite generalist, being in primary care.
 But I'm quite interested in persistent pain, chronic conditions.

Lizzy Macphie:   2:47
 Fantastic. Well, welcome to the world of rheumatology. OK. And Niamh.

Niamh   2:53
 I'm actually opposite to Toni, I'm fairly fresh to the world of rheumatology. So I started my advanced practice role bout 18 months ago. Prior to that, I was specialised in musculoskeletal physiotherapy, which has lots of exposure to rheumatology, and that was for the past 13 years. In terms of specialist interest. I would say axial SpA is definitely fast becoming one of them. But also aquatic physiotherapy and how we can use that to treat all rheumatological conditions.

Lizzy Macphie:   3:29
 Fantastic. So my next question is not, what's your favourite cheese, but, on a rheumatology setting, it's “what's your favourite joint”. You're not allowed to say spine. So Toni, coming to you first.

Antoni Chan   3:44
 I think I'll have to go for the sacroiliac joint if that is allowed. It's got to be the SIJ for me, only because I spend a lot of time looking at them.

Lizzy Macphie:   3:53
 Fantastic, James.

James Holland   3:56
 I’d have to go for the knee? I'm quite interested in these.

Lizzy Macphie:   4:01
 Good stuff, and Niamh.

Niamh Kennedy 4:03
 I really struggled with this answer actually! But I would have to go for the shoulder. Just it's the most… I find it the most fun to assess and rehab as a physio so shoulder’s my choice.

Lizzy Macphie:   4:18
 Superb. I think shoulder’s the bottom of my list. I always get slightly intimidated, especially when I have a physio in clinic who I'm doing some sessions with. Feel a little bit intimidating, examining those shoulders. Right, OK, and the final sort of quick-round question. So, what was the best thing you were taught in in training? So, Toni?

Antoni Chan   4:38
 So the best thing I thought was taught to me when I was training was nothing is what it seems and it's not over until it's over and that's because our patients in rheumatology, they evolve and they change. And just when you think you know it all, there is something else that pops up and you just have to keep spending time with them and looking after them.

Lizzy Macphie:   5:00
 Great advice. Great advice, James.

James Holland   5:03
 I think mine's just the listening to the patient that they often give you a lot of the answers themselves. As long as you give them enough time to get a good history and then listen. Basically, as I'd say.

Lizzy Macphie:   5:15
 I think that's my daily lesson. When I have medical students sat in. Really, really good tip and Niamh.

Niamh Kennedy 5:22
 Yeah, mine is very similar to James. I was taught very clearly that one of the most important skills we need as physios is to be able to communicate really effectively with our patients and those active listening skills. I think we're often asking people to really trust us, you know, to move painful joints or to make your sort of difficult choices and changes. So if they feel like they haven't been understood and listened, then it's very difficult to get them on board.

Lizzy Macphie:   5:54
 Great advice, great advice. Right, so we're going to come to our next section, which is hearing about each of your projects. So I'm going to actually ask you each in turn to talk through the fantastic projects that you've brought to life. And so I'm going to come first to yourself, Toni, and ask you, first off, what need were you addressing with your project?

Antoni Chan   6:15
 We were trying to reduce the delays to diagnosis and also to improve the integration between primary and secondary care and also community care. We wanted to move away from what was a very one way interaction between secondary care to primary care, to be a more integrated collaborative model and one of the things that we have set up over three years ago was an academy called RheumACaN, which is the Rheumatology Academy and Collaborative Network. And it's really a coming together of primary, secondary care, community physios and specialist rheumatologist to sit together and really understand referral patterns and pathways and then come up together with a solution that is integrated for everyone.

Lizzy Macphie:   7:00
 Fantastic. So what steps did you take to bring about the changes?

Antoni Chan   7:06
 So the first thing is to understand the referrer. So we spent a lot of time in community physio clinics and in primary care prior to setting this up. We asked - it was very much a learner driven approach - so we're asking them what exactly they wanted to know about axSpA and then we kind of developed the programme where there was a lot of mentoring and also not just lecture based but actually seeing through cases, doing cases together, action learning sets. At the end of them we got them to come back to teach their peers as well. So we had a train-the-trainer model. And this is the way we're going to ensure that there is spread of the teaching but also the sustainability. And in the three years we have seen in big improvement in the in the reduction in the time to diagnosis. We've recently just audited our data and we've managed to get down to just under a year now from what used to be eight years.

Lizzy Macphie:   8:00
 Fantastic. And how did you involve the multi professional teamand the patients in your project?

Antoni Chan   8:07
 So we had a patient group that was advising us on the content of the programme on what is really important. We did a survey of 400 patients to understand what really matters to them so that we could develop the content in the in the programme, that was kind of meeting the needs of the patients. And then we had regular feedback and meetings with patient groups and also with the users as well or the participants to ensure that the programme is was really fit for purpose.

Lizzy Macphie:   8:37
 And with respect to, we've heard about that delay to diagnosing that fantastic reduction. What other impact has your project had on your service and team?

Antoni Chan   8:49
 We've improved the accuracy of people who actually get referred now. What used to be 20% in terms of people who actually have axSpA from those who are referred. Now we improved that to up to 60%. So we are also seeing that the accuracy of the referral is improved and that is good for us because we are obviously restricted - limited in our resource, in our clinic spaces and just trying to make best use of that. Also ensuring that people who have other causes of back pain are not neglected.
 That they also have the right path to go to be from mechanical joint pain, so other chronic conditions that we also ensure that their care is also looked after.

Lizzy Macphie:   9:30
 Great. Oh, thank you. Sounds absolutely fantastic, the work you've done. So I'm going to come next to James. So similar sort of styles of questions, James. So, firstly, what need were you addressing with your project?

James Holland   9:46
 So yeah, so mine was similar to Toni, I guess. Toni did it from a top-down approach and myself in primary care working from a bottom-up approach. So, again we were looking at improving the awareness, just making sure primary care conditions had axSpA as a differential diagnosis in the back of the mind when it came to patients with chronic back pain. And, again, we were also looking at reducing that delay to diagnosis, particularly within one of the primary care networks within Stockport, where I work at.

Lizzy Macphie:   10:19
 And with respect to bringing about that change, what steps did you did you take to make the change?

James Holland   10:25
 So we did a 2-step approach. Obviously, one was the education, similar to what Toni was doing. We did a lot of education virtually, face-to-face, within individual GP practices, within the local Stockport GP masterclasses. We also did some training to the wider first-contact physiotherapists across Stockport. Alongside them was musculoskeletal physio service within Stockport and we also did a wider education session across Greater Manchester as well from there. 

Secondly, we looked at trying to implement an inflammatory back pain template in terms of the questions - amalgamating between the ASAS inflammatory back pain questionnaire alongside a NICE guideline as a template for GPs to use to make sure that they're asking the right questions and trying to have that idea of that referral threshold - of when they should be referring to rheumatology. Built good links to rheumatology. Do a lot of advice and guidance here as well. Trying to find those patients to make sure they're being referred on appropriately.

Lizzy Macphie:   11:37
 Great. It's really interesting to hear there about the use of advice and guidance. It’s something we've really trying to push locally. So how did you involve the multi-professional team and patients in your project?

James Holland   11:49
 Yeah. So again, it was a small project to start, with just being within one of the PCNs. But I think a lot of the work was around obviously the primary care team within GPs, FCPs, advanced nurse practitioners within this area, and just building those really good relationships within our colleagues within primary care just to improve that awareness from there. We saw good improvements in knowledge and awareness of axSpA. And we've seen lots of conversations really with colleagues in or even on WhatsApp groups within our FCPs when it comes to these patients, which has been really helpful as well.

Lizzy Macphie:   12:31
 Great. It's quite incredible, isn't it? The ways by which we communicate these days. So what impact has your project had on your service on patients and the team?

James Holland   12:34.
 Yeah. So in terms of the team we, we saw good improvement in terms of the self-reported scores on their knowledge of axSpA and their confidence in recognising the signs and symptoms with all the education events that we put on. We've had about 12 different primary care clinicians use a template within this PCN, which has been triggered about 40 times. And that's led to about 9 referrals to rheumatology. It's been a small project in a small area in a small time frame which has been a bit of the challenge. But it's led to two diagnoses, and in both the delay was only just under six months for those two that were seen and they were only seen once in primary care compared to previous kind of data showing that patients were seeing about 6 times before they were referred on. And obviously previous data showed that we had a similar delay to diagnosis of about seven years baseline prior to the project started.

Lizzy Macphie:   13:53
 Great! So finally coming to yourself, Niamh, and hearing about your project, So what need were you addressing?

Niamh Kennedy 14:07
 The main goal that we had for our project was, when I first came in to post the one of the rheumatology consultants, Dr Adrian Pendleton, approached me with the suggestion of being involved in setting up a new axial SpA clinic, which we didn't have at all in the Belfast Trust. So, of course, I said yes and we sat down and had a think about our service and our patients and how we might go about improving things.
 
 

Our approach is similar, in a lot of ways, to James and Toni, in that, it was really about thinking about where the referrals come from and linking in and improving those links seems like the kind of most obvious first place to start. Improving our links and communication channels across primary, secondary care and improving the recognition and awareness of the signs and symptoms of inflammatory back pain.
 
 

We wanted to do this amongst our colleagues, but also amongst the general public who might have back pain but not recognised that axial SpA was even a possibility.
 So we also wanted to improve the referrals coming into the clinic and really let referrers clearly know what information needs to be on the referrals and how to send them through so that they can be triaged effectively.
 
 

Within the clinic itself, we wanted to build in good quality physiotherapy involvement from the very beginning of the patient journey. And we knew as well, from, at the beginning point of this journey, that it was really difficult to find key metrics like our waiting times, our baseline number of referrals, even our time to diagnosis. So we knew building a really good database of these patients was important. Starting from the start, and knowing, the data going forward to really measure the impact of the changes we were making over time.

Lizzy Macphie:   16:18
 So what steps did you take to bring about these changes?

Niamh Kennedy 16:24
 We were very lucky in Belfast. We got to work with great outside organisations who supported us setting up this clinic, so we worked very closely with AbbVie through a collaborative working agreement and that linked us in with similar work which is being done by the rheumatology department over in Coventry. With their support, we hosted, you know, a big education day in Belfast in a hotel, got everybody together and we also held, kind of, interactive workshops bringing lots of colleagues together, to develop an axial SpA pathway, which is really based on the Getting it right first time (GiRFT) recommendations and also that kind of listening to and incorporating any concerns or feedback from colleagues. There was also great work being done by NASS through the Act on Axial Spa campaign. So the campaign manager, Joe Eddison, and a local Belfast GP, Neil Heron, were working on this. And so we linked in with them and they created an amazing six-week public awareness campaign across Belfast using social media, ads, radio and billboards. And those ads were driving people in the local population towards the NASS Online symptom checker if they suffered with back pain. So as well as that we ran online education sessions similar to Toni and James. And really getting all of the GPs on board with online sessions.

Lizzy Macphie:   18:03
 It's absolutely fantastic to hear about all that collaboration and learning from others. You don't have to reinvent the wheel, do you? So great examples there of sharing that learning. So how did you involve the multi professional team and patients in your project?

Niamh Kennedy 18:19
 Again, similar to Toni and James, we had a wide variety of people at our education sessions. So we were trying to reach across primary and secondary care. We were very conscious of the fact that, patients with back pain, due to pressures on the NHS, will very often turn up to a private physio first, and so we really tried to reach in and link in with the private sector, in particular. So loads and loads of private physiotherapy colleagues came to the in-person Education Day, which was really great to see. And creating the links between the NHS and the private sector was really important for us as well. 

We went out to our patients with an involvement questionnaire. We were supported by the Belfast Trust involvement team so we asked them about their experiences of getting a diagnosis and also if they had suggestions, really, what support and information they feel would be helpful from our service, when in their journey they wanted that, and what form they wanted that to take. So we had 27 responses from patients, which gives us great information and going forward to make our new clinic and pathway just really patient centred.

Lizzy Macphie:   19:42
 Superb. You've got me thinking. I've never thought about reaching out to private physios, so, oh, I’m going to add it to my job list! So what impact has your project had on your service, patients and the team?

Niamh Kennedy 19:57
 So it's early days in the clinic, but we have had some positive initial data. The first six months of our clinics, we've seen 31 new patients and out of those 31 new patients, seven of those have received a confirmed axial SpA diagnosis, which is a 23% conversion rate. And then out of those 31, another four received a psoriatic arthritis diagnosis.

 So really telling us that we were getting the right patients into the clinic. And the average waiting time from referral to assessment at the clinic has been two months, 11 days, which we really find really encouraging.

 We're really, really pleased with the partnerships and the links with so many of our colleagues across Belfast, Northern Ireland and people doing similar work in the UK. It's been really, really great and we've been able to affect demonstratable differences in referral practises across primary care colleagues, orthopaedic ICATS, and across musculoskeletal physiotherapy colleagues, and raised the awareness levels of axial SpA amongst the public. We know that the ad campaign was really, really effective driving people to the symptom checker. And just, finally, on a more personal note, I've really been able to develop, extend my role, expand my practice, complete my non-medical prescribing and working in the clinic has just been really hugely rewarding for me.

Lizzy Macphie:   21:37
 And I think there's nothing wrong, is there, with saying, you know, that personal satisfaction and growth that you get from doing these projects. Great work, great work. So I'm really keen to hear from you all as far as, how you feel BSR could support you to increase the impact of your work. So Niamh, I'm going to come to you first and then James and then Toni.

Niamh Kennedy 22:02
 Well, first of all, this podcast is absolutely an ideal way to support us and increase the awareness of our work. So thank you very much for having us.
 Us, as a team, we're hoping to publish our work and possibly in Rheumatology journal, but really it's, you know, thinking about the BSR clinical guidelines that are due in 2025, which will hopefully you know continue to further support the work we're doing and underpin the care we provide for our axial SpA patients.
 
 

And, again, coming back to, kind of, my personal note again, it's just that that the BSR workforce campaigning that happens, it can really directly impact people like myself. So, aiming to remove those barriers to developing extended scope rules, really encouraging appropriate use of skill mix in our clinics to maximise our resources. And so that just allows people like me to take on these roles and to support that work.

Lizzy Macphie:   23:07
 Fantastic, James.

James Holland   23:09
 Mine’s a simple one. It's just more to make people aware that quality improvement projects can be done at kind of any stage of the pathways or processes or journeys for patients. It doesn't always have to be done within specialist kind of rheumatology clinics, from there. So if you've got a need and a desire and finding an area that you want to improve on, then just go for it really will be my advice.

Lizzy Macphie:   23:36
 Superb. We all need to put our Qi hats on, don't we? And finally, Toni, what support would you find helpful from the BSR.

Antoni Chan   23:45
 The BSR has been very supportive of our programme over the years and we’d like to see more of that. We feel that the BSR is the place for us - the platform for us to share our best practise. It has a role in advocacy. It has a role in implementation. It has a role in dissemination of information. As you've heard today, there's so many learnings we can learn from each other and if we can use the BSR as the conduit, as a place where we share all these learnings and spread it out, I think we can get there quicker, we can get there faster and we can get there better. So, you know, I think the BSR is our organisation that we're really proud of. I think it's playing a great and important role in trying to disseminate information, such as we are doing here today in this podcast.

Lizzy Macphie:   24:35
 Mm hmm. And my final question to each of you, so what would be your top tip to anyone starting out on a quality improvement project like this? So Niamh, to you first?

Niamh Kennedy 24:48
 My top tip would be that if you get stuck on the road or come up against any road blocks would be just to keep bringing it back to what's best for the patients.
 I have personally found those patient stories can really get people on board, and if you have a group of people with who might have different priorities, really focusing on what's best for the patients can unify a group.

Lizzy Macphie:   25:15
 Great, James.

James Holland   25:17
 Mine would be not to just rely on one option or solution. Kind of important to have backup plans. Going back to the drawing board and having a few different ideas in place at once rather than just trying to go with one and then if it doesn't work, you've got to then start from scratch again.

Lizzy Macphie:   25:38
 Toni.

Antoni Chan   25:39
 I would say start small, do one or two things, do it well but keep measuring it. It's going to be the aggregation of small changes that's going to bring about transformation. Transformation is a scary word because it assumes that you're going to do some major project. But, in fact, if you do small changes… I like the 1% rule. If you do 1% every day, you'll get to 365 at the end of the year. And you surely must be better than when you first started. So, engage, collaborate and have some guidance and we're very grateful to the NASS for giving us QI training and also the BSR, because you need some of these QI methodologies while you're doing your project. Just to ensure that you have some structure, but really important, measure and data - really important for setting out to do quality improvement.

Lizzy Macphie:   26:28
 Fantastic. So I mean it's been absolutely well, I'm going to say fantastic yet again, but it has been fantastic listening to you all your projects sound amazing and thank you for coming and sharing them. And I have no doubt you're going to have enthused lots of people to go away and have a think. I've certainly written down a few things listening to you all today as to things I'm going to take away and have a think about.
 And really appreciate you sharing those top tips because it can be daunting. And I think you're absolutely spot on, Toni, that word transformation at the moment just feels - it feels overwhelming given the current situation that we're facing. So there's small incremental changes are really, really the way to go about making those positive changes. 

So, thank you to you all for your time today. It's been fantastic listening to your projects and, to our audience who've joined us please look out for another Innovators podcast episode on Talking Rheumatology next month. Thank you.

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