What is the Champions in Primary Care Programme?
We created a cadre of clinical champions in primary care and community services whose work ensures that axial spondyloarthritis (axial SpA) is higher within the clinical reasoning of primary care professionals, so that patients who present with suspected axial SpA are identified at the first presentation and urgently referred to rheumatology.
Working with our partners at the NHS Transformation Unit, the Champions underwent a two year programme which focussed on quality improvement and leadership.
Introduction to Claire:
I started my career as an Osteopath. After completing a four year BSc (Hons) degree at the British school of Osteopathy in London, I worked for several years in central London before moving to Edinburgh to set up my own private practice.
In 2003, I decided to have a career change & retrained as a doctor graduating from Peninsula Medical school in 2008. I remained in Cornwall for my foundation training before moving to Cambridge & started my GP training in 2012. I still live and work in Cambridge and I’m privileged to work as a salaried GP at Nuffield Road Medical Centre.
My interests are womens’ health, dermatology and rheumatology.
I am a proud mum to two daughters and in my spare time I enjoy cooking, wild swimming, travelling & vintage fashion.
Why Claire wants to be a NASS champion:
In 2019 I was diagnosed with Ankylosing spondylitis (or axial SpA / AS) during an Acute flare that left me bed bound. The rheumatologist I saw reviewed an old MRI scan from 2 years previously, which revealed grade 3 sacroiliitis that wasn’t acted upon.
At that point I had experienced over 20 years of multiple joint pains and recurrent enthesitis, that as an athlete was often attributed to sporting injuries. The three GP’s I saw over the years reassured me my symptoms didn’t warrant referral, as my blood tests were ‘normal’.
Looking back, I can’t believe I missed the diagnosis in myself! I did have some knowledge of AxSpa but I was shocked at my own misunderstanding of several aspects of the condition & complete lack of awareness of others. On discussing my diagnosis with colleagues, I found I was most definitely not alone in this.
GP education in this area is relatively poor, unless a doctor has been lucky enough to do a rheumatology rotation earlier in their career, but this isn’t very common.
Being a GP with AxSpa gives me a very unique perspective for this programme and puts me in an excellent position to be a catalyst for at least some of the change that is so desperately needed to improve the lives of so many affected with and by AxSPa.
What Claire hopes to achieve from the programme:
“By being a part of this programme my aim is to increase knowledge of AxSpa in both GP’s and in GP trainees. I’d like to debunk the myths often associated with AxSpa and support and facilitate recognition of symptom trends in individual patients by utilising IT software.
Ultimately, I hope to continue my learning journey and with the other members of the programme, hope we can work collectively to drive forward a positive change and make steps to reduce time to diagnosis for those living with AxSPa.”
Introduction to Karen:
With 26 years of experience as a qualified Physiotherapist, I have worked in most areas of musculoskeletal care. For the last 12 years, I have been working as an Advanced Physiotherapy Practitioner specialising in diagnostic spinal triage within the newly titled North Integrated Musculoskeletal Service (NIMS). My interest in Axial Spondyloarthropathy dates back to my University days having formed the basis of my undergraduate research project. It remains prominent in my spinal triage role in the recognition and investigation of inflammatory spinal pain.
Previously specialising in rheumatology, I have continued to work developing an extended clinical role with the Rheumatology Consultants at the Haywood Rheumatology Service in the weekly Axial Spondyloarthritis clinic.
Why Karen wants to be a NASS champion:
It saddens me to hear the difficulties patients have endured and I have seen first hand, the significant impact that the delay to diagnosis can have on their quality of life. Knowing that there are treatments available, which can provide life-changing benefits, is a clear motivation for my wanting to be involved in this project working with NASS. I have been looking for such an opportunity to get involved in a project, which lends itself to an area in which I feel passionate and in which I have developed a level of expertise.
What Karen hopes to achieve from the programme:
“I look forward to working together with the NASS Champions in engaging and working more closely with primary care colleagues: raising the profile of Axial Spondyloarthritis (including Ankylosing Spondylitis / AS), improving early recognition of the symptoms and pathway implementation to improve the patient’s journey and access to care.”
Introduction to Jenny:
I have worked as a physiotherapist within the NHS and have been a FCP since 2018, and also provide secondary care clinics for patients with Axial SpA as part of my Clinical Specialist MSK Physiotherapist role. I have also been involved in the Abergavenny NASS group for many years which has re-started post-Covid. These varied experiences have provided different insights into the challenges of Axial SpA recognition, diagnosis and management and also the lived experience from newly diagnosed to well established disease.
Why Jenny wants to be a NASS champion:
I have heard many patient stories of years of frustration to receiving a diagnosis (of axial SpA, Ankylosing Spondylitis or AS) and the impact on their life, and also more positive stories of early recognition, referral and diagnosis. From working as a FCP I also further understand the challenges in primary care, so this programme provided an ideal opportunity to try an influence recognition and the patient pathway.
What Jenny hopes to achieve from the programme:
“Through this programme I hope I can increase awareness of this condition in primary care and enable easier recognition and appropriate referral to secondary care services, ultimately contributing to a reduction in delay to diagnosis.”
Introduction to James:
James qualified as a Physiotherapist in 2007 and has worked in a variety of musculoskeletal settings prior to his current role as a FCP which he started in 2018. During his training, James has completed a Diploma in Musculoskeletal Medicine and is injection trained. He has also recently completed his MSc in Advanced Clinical Practice.
Why James wants to be a NASS champion:
My main motivation in applying for this programme is to improve the lives of those living with Axial SpA (including Ankylosing Spondylitis / AS). With the diagnostic delay being 8.5 years, we as healthcare professionals need to do better at asking and recognising signs and symptoms of Axial SpA and act on them appropriately.During my recent MSc in Advanced Clinical Practice, one of the modules covered primary care. This opened my eyes to the vast knowledge base required for healthcare professionals(HCPs) working in primary care. When MSK was covered, only a very small part of this covered rheumatological conditions and although Axial SpA was mentioned, very little information was provided on this condition. I therefore want to increase the awareness of Axial SpA in primary care and make sure HCPs are asking the right questions to recognise this condition.
What James hopes to achieve from the programme:
“I hope to educate the primary care workforce in Stockport on the signs and symptoms of Axial SpA and successfully implement a quality improvement project which enables earlier detection of Axial SpA.”
Introduction to Toby:
I am a GP Partner in North Yorkshire and have 15 years’ experience working as a GPwER in Musculoskeletal Medicine working in various MSK interface services. I also worked in rheumatology both as a junior doctor and as a clinical assistant. I am a longstanding member of the Primary Care Rheumatology and Musculoskeletal Medicine society and have recently worked on their behalf supporting the new FSEM/PCRMM joint badged MSK diploma, both in question writing and standard setting for the exam.
Alongside my NHS work I have experience both working and volunteering in amateur and semi-professional rugby as a team medic. Outside work I enjoy mountain and gravel biking alongside spending time supporting my daughters rowing and playing rugby.
Why Toby wants to be a NASS champion:
My first real experience of Axial SpA (including Ankylosing Spondylitis) was whilst working on a regional rheumatology in-patient unit as an SHO in rheumatology almost 20 years ago. My interest in this condition was developed at this time as treatment options were limited and patients suffered significant morbidity. Over the years I have seen the impact of delay and misdiagnosis on many patients in both primary and secondary care and feel by being part of this programme I can really improve the lives of both patients and their families in our local community. I am also keen to share ideas and network with like-minded clinicians about improving the outcomes for patients with Axial SpA.
What Toby hopes to achieve from the programme:
“I aim to engage, educate and empower our local primary care teams and their patient populations in earlier identification of Axial SpA and appropriate and timely onward referral to secondary care services. I would also like to improve engagement with secondary care providers and streamlining of the referral pathways for Axial SpA patients.”
Introduction to Steph:
Steph works as a Musculoskeletal Advanced Practice Physiotherapist in North Staffordshire and Stoke-on-Trent in a newly integrated musculoskeletal service. I qualified in 2008 from Keele University. I have worked as a physiotherapist in North Staffordshire and Stoke-on-Trent since 2008, predominantly involving musculoskeletal and rheumatology caseloads. My current role involves specialist triage and assessment of patients with MSK conditions, but also works one clinic per week within a dedicated multi-disciplinary Axial SpA clinic.
Why Steph wants to be a NASS champion:
Steph has a particular interest in Axial SpA (including Ankylosing Spondylitis or AxSpA / AS) due to the nature of her role and feels that the current 8.5 years to diagnostic delay is not acceptable in this day in age. Steph feels that the programme would be an amazing way of trying to make a difference and to change the lives of people with Axial SpA for the better. It is also a fantastic opportunity for her personal development as well, from a project management and quality improvement perspective.
What Steph hopes to achieve from the programme:
“I hope to make a difference to the diagnostic delay problem people with Axial SpA face, both locally and nationally. I hope to be part of a network of clinicians with similar values to make a genuine change to educate both health care professionals and the general public, raise awareness of the condition and implement ways of improving the patient journey from onset of symptoms to diagnosis.”
Introduction to Lucy:
My name is Lucy McCann, and I am a physiotherapist working as a First Contact Practitioner in four GP practices in South Warwickshire, and as an advanced practitioner in an MSK triage service in Leamington Spa Rehabilitation Hospital. I have held this post for 18 months and before this worked in another MSK triage service in Birmingham for 10 years.
Away from work I enjoy as much time outdoors as I can but seem to spend most of my time running around after 2 young children and all their demands.
Why Lucy wants to be a NASS champion:
I qualified in 1999 and worked for some years in Wales, where I got involved in the local NASS group. This was an active group with a strong identity and excellent links with the physiotherapy department. In recent years, my focus has been on my family and they ‘day job,’ but when I saw this post publicised on Twitter it seemed the right time to get involved in something that could make a change, particularly as part of my role within primary care.
What Lucy hopes to achieve from the programme:
“I would describe myself as a ‘generalist’ within MSK, but I am looking forward to strengthening the pathway to Rheumatology and working with clinicians and IT systems in primary care to do this. I would also hope to improve local support for patients with Axial SpA (including Ankylosing Spondylitis), as well as sharing knowledge and ideas with the other champions from different parts of the country.”
Introduction to Paul:
Paul has worked in Rotherham since 2010 in a variety of roles progressing to the current roles of FCP and OPP at the Rotherham NHS Foundation Trust. Paul is originally from Hertfordshire but moved to South Yorkshire / North Nottinghamshire following university. Paul is currently completing an MSc in Advanced Clinical Practice (ACP), as part of his personal development.
Outside of work Paul enjoys most things outdoors and is currently most into biking and golfing.
Why Paul wants to be a NASS champion:
Paul has previously worked with the local NASS groups and undertook extra training on how best to manage those with Axial SpA (including Ankylosing Spondylitis) following the interest that developed from working with the local NASS branch patients. He was always shocked at the time to diagnosis and some of the potential issues this caused for those people he met through NASS.
What Paul hopes to achieve from the programme:
“I’d love to be the local clinical expert who people looked to for help in managing patients with potential Axial SpA. I want to be able to implement local training to improve knowledge on the condition and its identification. I’m hoping to achieve systemic changes in how we use the IT systems locally to help in early potential identification of Axial SpA.”
Introduction to Kirsty:
I have been an Advanced Practice Primary Care Physio / (FCP) since 2019 but have worked for the NHS for over 20 years enjoying and experiencing working in both core and specialist roles within both local and regional services. I soon realised that my interests lay in MSk and Rheumatology so after several rotations in these areas, I became a Specialist MSk Physiotherapist before moving into a Rheumatology Specialist Physio post in 2015 until my current role. While in Rheumatology I worked alongside two of my consultant colleagues in combined AxSpA clinics for both newly diagnosed and established axial SpA patients. I also ran the NASS Gartnavel Physio led exercise group and was responsible for recruiting another Physio’s on a rotational basis. All these experiences throughout my career have been incredibly rewarding and with the development of these new APP/FCP roles, I feel all my previous clinical experience have been pieces of a jigsaw that are now slowly coming together.
Why Kirsty wants to be a NASS champion:
I first came across AxSpA (or more specifically Ankylosing Spondylitis at that point) when working in the Regional Spinal Injuries unit. I had a gentleman who was quadraplegic after breaking his neck after falling backwards from a chair while doing back extension stretches for their AS. Compared to my other spinal patients who had acquired their spinal injuries through more traumatic means such as road traffic collisions or falling from work scaffolding, it seemed so cruel that this condition meant that a simple fall from a chair caused such extreme and life changing injuries. I learned there were no treatments that could stop the ankylosing of the spine but then while on rotation in Rheumatology some years later, new, and exciting developments were happening with the emergence of biologic therapy. My new excitement for AxSpA treatment was quickly replaced with frustration with patients being at the mercy of how quickly they were picked up in the community and primary care. Imagine my delight when several years later they piloted the FCP/APP role in Primary care. Finally, a new role where I could start to influence the change needed and be part of the solution working further upstream! My AxSpA spinal patient is that patient who has influenced every career decision that I have taken and lead me to this point in my career. The AxSpA champion programme almost reflects my career journey and is the final piece of the jigsaw to my APP/FCP career.
What Kirsty hopes to achieve from the programme:
“I hope with the support of this Programme that through education, enabling and empowering both clinicians and patients, this will lead to earlier onward referral, smoother patient journeys, more efficient management, ultimately meaning those with AxSpA can decide the life they wish to live instead of this being determined by the extent of their diagnostic delay.”
Introduction to Sam:
Sam completed her Bachelors in Physiotherapy in 2006 and after working in India for two years, she pursued higher education at Sheffield Hallam University and completed a Masters in Musculoskeletal Physiotherapy in 2010. She has worked in private as well as NHS sectors since then. She passionately believes that one should never stop learning, she has successfully completed PG Dip in injection therapy -20 credits (2016), Advanced practice in musculoskeletal medicine-30 credits (2018) and independent prescribing-40 credits (2022). Sam passed her diploma in musculoskeletal medicine and sports exercise science to gain a diplomate membership of the faculty of sports and exercise medicine (2021).
Sam is extremely enthusiastic about personalised care, wellness and fitness and runs her own clinic, Physiozen to educate, treat, manage, and improve fitness and wellness using social media as well as physiotherapy, pilates and dance fitness classes. She is also a Health education England trainer to train supervisors to support FCPs nationally and a co-convenor of CSP -FCP London peer support group.
Her current role is working as an Advanced physiotherapy practitioner (APP) and an Advanced First contact practitioner AP-FCP for Kingston hospital, London. She regularly attends webinars conducted by PCRMM, FSEM, Versus arthritis, MACP, APPN. Her special interests are spine and having worked as a clinical spinal specialist (2017-2020) and now as a first contact practitioner she has developed special interest in Rheumatology and inflammatory spondyloarthropathy.
Why Sam wants to be a NASS champion:
Sam wants to be a NASS champion to educate and create awareness about inflammatory conditions especially spondyloarthropathies (such as axial SpA or Ankylosing Spondylitis). Her FCP experience has highlighted the lack of awareness amongst the primary care workforce, and experiences of patients suffering, not only physically but also mentally because of a lack of diagnosis, understanding and awareness of management in primary care.
For information, advice and to join a community of people who live with the condition visit the NASS website. Or visit our helpline.
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