Knowledge is power and the power is shifting in healthcare. From an ‘old power’ model of ‘doctor knows best’, patients are becoming willing and activated decision-makers in their own care, towards a ‘new power’ model of ‘patient knows best’. With this shift comes a responsibility to support patients to feel informed and empowered to self-manage.
The reality for adults living with Axial Spondyloarthritis (AS) is having to make tough choices about self-care every day. Whether to live or not to live the recommended lifestyle of daily exercise. Remember your 18-year-old self? Did you always do what you were told?
Patients would frequently tell me they did not wish to be reminded they were ill when they were well. Knowing what to base good choices on has not always been easy, and I felt I was failing my patients by not giving them the ‘why?’. I needed to do something about this.
All good services are designed with users at the heart. Patient information resources should be too. In 2011, when I embarked on a design journey to develop the ASK – the ‘Axial Spondyloarthritis Know-How’ self-management toolkit – I didn’t do it alone. It was really important to bring patients and charity partners with me to understand what really mattered.
The vision was to offer patients both the ‘know-how’ and the ‘why’ of making healthy behaviour change. I came up with the strapline: Any questions… just ASK? I wanted patients to feel they could ask anything about their condition.
I left the ASK session feeling refreshed, supported and armed with knowledge to move forwards.
The design journey was not always smooth. The earliest version of the ASK toolkit was a black and white paper resource – because black and white printing was free. I grew frustrated by the patients’ experience of ‘making do’ with exercise intensity explained through ‘shades of grey’, and the toolkit being single use as soon as a problem or treatment goal was written down. Patients deserved better.
In 2015 I twice faced the NHS equivalent of Dragon’s Den to pitch for funding to further develop colour and digital versions of the ASK toolkit. Failing (twice) teaches you a lot about what really matters. I think I became even more resourceful when I had so few resources.
It was a serendipitous encounter with a design student in 2017 working in my trust which led to the co-designed ASK digital self-management toolkit the BMA has recognised with this award. Patients can now find expert support at the tap of a finger and go back time and again to record their problems, goals and experiences, as circumstances change (as well as a paper version in full colour too!).
A small grant in 2018 enabled me to complete the toolkit with a co-produced short film to share patient experiences of ASK. The new power of patients sharing their stories with others was to ensure no one felt alone with AS.
You think you are the only one... but then you realise that there are many more with so many things in common. It gives you courage to look forward to the future rather than be pessimistic. You become an optimist.
Designing the ASK self-management toolkit has most definitely been a marathon and not a sprint. Winning the BMA award was much welcomed; to finally cross the line after many bumps in the road. But raising awareness of AS is the real winner. I hope through the award scheme more people will know about AS. It also shows clinicians can deliver co-produced person-centred resources on a shoestring budget if you have the right team around you – which must include service users.
The COVID pandemic has changed the way we all live, work and care for ourselves. The ASK self-management digital toolkit means patients living with AS can continue to receive the care they deserve when they need it in our digital world.
Although it is designed to be used in conjunction with attendance at a physio group session at Guy’s and St Thomas’ it deserves a much wider rollout, potentially to all patients in the UK with the condition. The digital format should make this easily achievable.Stafford GP Peter Glennon
The Axial Spondyloarthritis Know-How self-management toolkit was awarded as the winner of the BMA patient information award 2019, as well as the ‘best NHS resource’ award and ‘best self-care award’.
The 2021 awards ceremony is on 26 May. Find out more and book your place