NASS forms first ever all-party parliamentary group (APPG) for axial spondyloarthritis

19 March 2019

When waiting 8.5 years for a diagnosis just isn’t good enough

The delay to diagnosis for axial spondyloarthritis is 8.5 years, and now parliamentarians are coming together for the first time on 19 March to put into action plans to reduce this dramatically.

Axial spondyloarthritis (axial SpA) including ankylosing spondylitis (AS) is a painful, progressive, life-long form of inflammatory arthritis affecting 1 in 200 adults in the UK, with symptoms usually starting in late teens to early twenties. Awareness of axial SpA (AS) amongst GPs and the general public is low and, as such, the current average delay to diagnosis for axial SpA (AS) in the UK is eight and a half years, which can result in life-changing outcomes including debilitating and irreversible spinal fusion.

There is guidance in place; the National Institute for Health and Care Excellence (NICE) published a Guideline in 2017 and a Quality Standard in 2018, setting out recommendations relating to the diagnosis and management of axial SpA (AS), but no formal arrangements were made to ensure that these are implemented.

In a bold move, the National Ankylosing Spondylitis Society (NASS) has been working with parliamentarians to develop an APPG to provide national pressure on healthcare providers to implement the NICE Standard in full. The first of its kind for axial SpA (AS), the APPG will work closely with NICE, clinicians working in the field, and of course patients, to lobby commissioners and providers to ensure the best possible care.

Derek Thomas MP, Member of Parliament for West Cornwall and the Isles of Scilly (St Ives) said: “I was delighted to be asked to be the Chair of this APPG; with so many young people affected by this debilitating condition at such an important stage of their lives, it is vital that they get a diagnosis and the follow up care and support that they need as soon as possible. I’m confident that this group will make a real difference.”

Lord Campbell-Savours, Labour Life Peer said: “It was a pleasure to be approached by NASS to work with them on setting up this timely APPG. Too many people are waiting too long for a diagnosis. As someone with AS, I am glad that I will be able to help others get the best possible care and treatment in this long-overlooked condition.”

This development is part of a larger campaign led by NASS called Every Patient, Every Time which calls for every patient to receive early diagnosis and effective care. It will include a new UK-wide initiative to create a national network of rheumatology services that are aspiring to excellence.

“NASS is delighted to be working with parliamentarians, patients and leading clinicians to create a step change in the diagnosis and treatment of axial SpA,” added NASS CEO Dr Dale Webb.

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