Health Service Focus

Aspiring to excellence: Tackling axial spondyloarthritis with NASS

Dr Dale Webb FRSA, chief executive at National Axial Spondyloarthritis Society (NASS), explains why Aspiring to Excellence is important and how it links with our broader agenda

Article first published in the NHE Jan/Feb 2020 edition

Axial spondyloarthritis (axial SpA or AS for short) is a form of inflammatory arthritis that mainly affects the spine. It is a painful and progressive long-term condition for which there is no cure and it affects an estimated 1 in 200 of the adult population in the UK (approximately 220,000). It typically presents in late teens to early twenties with an average age of onset being 24.

Of considerable concern is the fact that the average time to diagnosis in the UK is 8.5 years. During this time people have to cope with significant amounts of pain and anxiety and they often pay a heavy psychological price for delayed diagnosis. Early diagnosis improves health outcomes and quality of life and ensures that people can maintain daily activities and their professional lives.

The average time to diagnosis has not shifted significantly in the UK. Meanwhile, treatment options have improved significantly, lending even greater urgency to the value of early diagnosis.

In 2017 NICE published clinical guidelines for the diagnosis and management and spondyloarthritis, and in 2018 it produced a Quality Standard for AS which sets out for commissioners and providers key areas of care that they should implement.

The Quality Standard says that adults with suspected spondyloarthritis should be referred to a rheumatologist and then have an MRI scan. Those with confirmed spondyloarthritis should be referred to a specialist physiotherapist for a structured exercise programme, they should be given information about their condition and told which healthcare professionals will be involved with their care and how to get in touch with them.

So far so good. But here’s the problem – nobody has responsibility for ensuring that the Quality Standard is implemented right across England, and there is no incentive or penalty for commissioners and providers that don’t implement it fully.

So how do we ensure that every patient, every time receives timely diagnosis and effective care for axial SpA?

We know from the quality improvement literature that to achieve system wide improvements in care we need to use multiple types of policy lever – top down, macro level ‘nudge’ mechanisms; bottom up programmes that tap into the intrinsic motivators of health professionals, economic incentives, educational interventions, etc.

We’ve been working over the last 18 months to create new change mechanisms. First, we worked with MPs and peers to establish the first ever All Party Parliamentary Group for axial SpA. It is about to publish the results of a commissioned inquiry into the implementation of the NICE guidelines across England and will use the report to lobby within parliament and the NHS for improvements. In the coming months the APPG will propose a gold standard time to diagnosis and later in the year set out a route map for implementation.

Next, we created Aspiring to Excellence. Based on the Breakthrough Collaborative Series model, hospitals work together in a three-year programme to identify local barriers to early diagnosis and effective treatment, test solutions using improvement tools at small scale, collecting data and refining interventions. Working with our partners, the NHS Transformation Unit, the first six hospitals have joined and we will be welcoming a second cohort of hospitals in the autumn.

Aspiring to Excellence provides a much-needed clinical focal point from which professionals can explore and test approaches to reduce the delay to diagnosis and improve axial SpA care and patient experience.

For participating clinicians there are many benefits: being part of a learning environment to explore problems and solutions in the design and delivery of high-quality axial SpA care; having access to a team of improvement experts who provide support to achieving local improvement goals; peer support; and the opportunities to share results and promote their service locally as a model of excellence. Our ultimate goal is that patients experience shorter time to diagnosis from symptom onset, improved satisfaction with services and better outcomes.

Aspiring to Excellence is already the largest healthcare improvement programme in rheumatology in the UK. Underpinned by a data-driven methodology and a strong emphasis on innovation, the knowledge and experience generated will be shared in real-time across the UK and internationally to help stimulate across-the-board improvements in care. 

We won’t allow ourselves to normalise an 8.5-year time to diagnosis. Instead, we are tapping into and supporting the intrinsic motivators and ideas of clinicians, as well as providing greater political visibility at national level, to drive forward improvements in diagnosis and treatment.