You can manage the condition, rather than be ruled by it

Axial Spondyloarthritis key stats

• 1 in 200 of the adult population in the UK have axial SpA (AS)
• 24 is the average age for symptoms to start
• 5 years is the average delay to diagnosis from when symptoms, by which irreversible damage to the spine may have occurred
• 59% of people with AS experience mental health problems

Source: National Axial Spondyloarthritis Society

 

You can manage the condition, rather than be ruled by it.

 

I have a condition known as Ankylosing Spondylitis (AS), an inflammatory condition that affects the spine

I’m 30 years of age and had symptoms for about 5 years which consist of lower and mid back pain and stiffness, usually waking me up in the middle of the night. Whilst very mild for the first couple of years, because of my career as a physiotherapist, I was lucky to recognise some of the characteristics and was officially diagnosed 2-3 years ago.

Normally AS doesn’t get diagnosed for years as it’s often mistaken as normal back pain. I proactively went to my GP and told them what I thought it was and that I needed to see a rheumatologist.

 

Having earlier access to treatment was very beneficial

My professional knowledge enabled me to get earlier access to treatment so I could do the right things to manage it – as a chronic condition, it can progress and get worse over time, so the more you can do early on, the more you can slow it down.

 

As long as I manage the condition properly, it doesn’t stop me from doing anything

I usually do an hour to an hour and a half of exercise a day, some in the morning and some in the evening. This includes yoga and stretching, also running and playing sport, otherwise the spine can stiffen and you can lose flexibility. It does mean I can’t just sit around and do nothing, which makes going on holiday and lying around for two weeks a bit difficult!

 

It’s a condition that has forced me to do exercise

If I do the right things, I can empower myself to look after my condition, the best I can. It’s nice to feel I’m not reliant on health services, but I do get a check-up every 12 months from the rheumatology team and advanced practitioner physiotherapist.

 

Health professionals have a duty to educate people, to help them manage better

Most patients don’t have specialist medical knowledge so it’s so important for physiotherapy services to recognise the symptoms, diagnose early and really empower the individual by giving lots of information in order for people to self-manage.

 

Moving from biomedical to biopsychosocial approaches – passive to partnership

There is a long-standing issue around the world in managing chronic conditions in that people don’t get very good outcomes long-term because the model is focused on fixing people and telling them what to do, rather than educating and working in partnership.

We’ve used the biomedical model of care for hundreds of years. It’s only in the past 20-30 years we’ve realised we need to change and this takes time. This includes how we’re taught in university to how services are structured.

 

Top 5 questions to ask your clinician about Ankylosing Spondylitis

I recommend that people with AS ask more questions and gain more information from their rheumatologist and physio. The more information they gain, the better they will be. In return, clinicians need to make their patients a partner in their care rather than a passive recipient. Consider asking:

1. What exactly is my condition? This doesn’t always fit into a neat box or have a clear-cut answer
2. Why do I have this condition? It could be genetic, could be other factors that the patient can take charge of and change.
3. How do we improve and manage the condition?
4. Priorities – what do you think the priorities are? What are the main things I should be working on?
5. Goals – what do you want out of your care? Set some goals to aim for.

 

The future – it’s not going to go away

As a long-term condition, I will have AS for the rest of my life. I’ve just got to be aware that things may change even if I do all the right things. But I’m giving myself the best chance and opportunity and if things do get worse, it will happen slower.

 

Let’s hear a bit more about Steven’s career

I’ve always wanted to work in the healthcare profession

My mum is a nurse and after work experience in the hospital, I liked to see how the physios worked – it’s quite hands on and very interactive with the patient, so my interest in physiotherapy was triggered.

I did my degree at the University of Birmingham and graduated in 2011. After a little private work in London, I worked for the NHS in the North West for 4 years, leaving to travel to South America, and latterly South East Asia and Australia.

On my return, I worked as a locum for a year whilst looking to settle into a permanent role and saw the opportunity to work in occupational health with Connect Health which sounded really interesting and varied.

 

I got a really good vibe about Connect Health in how they support and develop staff

I joined Connect Health in January 2018 and started in the London/SE occupational health team which has since doubled in size. I mainly work in railway contracts (I’m known as the “Train Guy”) but also cover food production sites and carry out a range of functions including wider ergonomic health assessment and health and wellbeing projects.

I knew a little bit about Connect Health from one of their NHS contracts and had a good impression. Their approach was always to ask what you wanted to do rather than what the service wanted them to do – that made you feel part of how you could shape the service.

 

Connect Health is always trying to improve, develop and be pioneering

I like being involved in different projects, to help push forward the development of physiotherapy as a whole. The level of support that you get throughout the company is really good. You genuinely feel part of a team particularly at a time where we are more isolated and working form home.

It’s a great company for supporting your development and skills across more than just being a physio – superb team dynamics and support.