Axial Spondyloarthritis

Jim Shannon Excerpts

Thursday 17th September 2020 Commons Chamber

[Tom Randall]

The hon. Lady is absolutely right. What I and her husband have experienced is sadly not a rare phenomenon.

The name axial spondyloarthritis will be unknown to many, if not most, people, but it is not uncommon. It affects about one in 200 of the adult population in the UK, or just under a quarter of a million people.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on bringing forward this debate. I spoke to him this morning to seek his permission to intervene. He is aware of the massive eight-and-a-half-year delay in diagnosing this awful illness. I read an article in my newspaper back home in May about a young mum in Northern Ireland and her battle. We must all be determined to secure extra funding so that early diagnosis can happen, for adequate research into this life-changing debilitating disease, and for more support groups. In Northern Ireland, we have only two—one in Belfast and one in Londonderry—for a population of 1.8 million spread across the whole Province.

[Tom Randall]

In last night’s Adjournment debate, the hon. Member for Pontypridd (Alex Davies-Jones) said that she felt like a proper MP after the hon. Gentleman intervened on her in an Adjournment debate, and I echo those sentiments. He is completely right about the delay, which I will come on to in a moment, and about the role that support groups can play in showing that people are not alone in having the condition and in providing moral and practical support. I hope that now awareness has been raised, there will be more than two groups in Northern Ireland in due course.

As I was saying, there are a quarter of a million people with AS, which makes it more prevalent than multiple sclerosis and Parkinson’s combined. Hon. Members may say, “Well, so what?” AS is incurable and it can be managed through medication, physiotherapy or exercise, but what makes it worthy of particular concern and debate is, as outlined earlier, the delay to diagnosis.

The symptoms of AS can be difficult to diagnose. I was passed between neurologists, geneticists and other specialists as various conditions were ruled out, before a rheumatologist finally diagnosed AS when I was about 20. I was very lucky that I had to wait only a couple of years before getting my diagnosis, but on average, there is a delay of eight and a half years between the onset of AS symptoms and diagnosis in the UK.