Having joined NASS in August with responsibility for ASone, I didn’t feel like I had a strong enough understanding of what it’s like for a young person to live with the symptoms of axial SpA (AS) and what their treatment is like. This is why I went to a young person’s rheumatology clinic in Sheffield for what turned out to be a powerful and interesting morning.  

The clinic looks after patients with a range of rheumatological diagnoses and is held at a sports centre just outside the city centre. This helps the young adults and teenagers who attend feel more comfortable than they would do in a hospital and encourages them to be more active with their conditions. The team running the service, led by the fantastic Consultant Rheumatologist Dr Lisa Dunkley, are one of the six from across the UK to be joining the Aspiring to Excellence programme. The programme is designed to encourage and recognise service improvement in axial SpA (AS) care. 

From my initial conversation with Dr Dunkley, it was immediately obvious why this team are so highly regarded. They try to look at how a patient’s illness is affecting everything in their life, including factors like mental and sexual health that are so important to young people. They invite a parent or carer to attend the clinic, but also ask them to leave the room partway through the consultation. This is to give the patient an opportunity to disclose more personal information to a medical expert that they might not otherwise feel comfortable discussing with a family member.   

The first patient I met had just started her first year of university and had been diagnosed with juvenile enthesitis-related arthritis (ERA), which is often closely related to axial SpA (AS). As if studying with more than 30 contact hours a week wasn’t enough, she was living with a lot of symptoms that patients will be all too familiar with. Getting enough sleep is so important (particularly for students) and this was a frequent problem for her.  

Following a letter to the university’s pastoral care team, changes have been made to make her life easier. This includes access to a taxi if required, extra time in exams and organised sessions with a trained councillor. Though it was a difficult consultation, Dr Dunkley emphasized that the patient was not alone and that people were there for her.

It was poignant session and it was great to see the level of care on offer, as well a lot of positive outcomes. 

It became clear to me throughout the morning that I spent at the clinic that there are numerous factors that make it such a fantastic and important service:  

• It is aimed specifically at patients who sit between paediatric and adult services – this age group have different and unique priorities 
• The team is dedicated and focused, giving patients access to expertise as well as familiarity 
• There are two link nurses to the paediatric and adult services, putting patients more at ease as they are looked after by staff they know and are comfortable with 
• Patients are asked about wide variety of issues such as their family and school life, which helps to secure the best treatment possible 

Another patient was being seen for the first time after years of steadily worsening back pain. He was studying for A-levels and had applied for university but was now struggling to study consistently and had already given up on several sports. This change in lifestyle at such a young age was clearly something that was difficult to adjust to. With treatment it was hoped that some of these problems could be alleviated and it is certainly a positive sign that he had now been seen by a rheumatologist. 

Other patients also showed why this service aimed at teenagers is so important as opening up about their symptoms was not something that came easily to them.  

My morning at the clinic was invaluable in showing the specific difficulties of living with the symptoms of axial SpA (AS) at such a young age. However, more importantly, it demonstrated that there is fantastic support and facilities like this run by amazing and caring staff like Dr Dunkley’s team. As with a lot of the stories from ASone, it shows that hope and positivity can always be found. For a list of paediatric rheumatology centres you can click this link. 

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