Axial Spondyloarthritis

Munira Wilson Excerpts

Thursday 17th September 2020 Commons Chamber

[Tom Randall (Gedling) (Con)]

I am grateful for the opportunity to hold this Adjournment debate. I have been a Member of this House for nine months. One of the great privileges of being a Member of Parliament is the opportunity to sit in this Chamber. The more astute observers might have noticed that I occasionally sit slightly awkwardly on these Benches. I admit that, sometimes, I slouch. One of my waggish Twitter correspondents recently juxtaposed a photograph of me and a photograph of my right hon. Friend the Leader of the House reclining on the Treasury Bench, with the caption,

“great to see Gedling MP getting comfy in parliament and following in the footsteps of his fellow parliamentarian”.

I admire the Leader of the House very much—there is much to admire about him—but on this, alas, I do not seek to emulate him. Rather, my awkward posture arises from the condition I have: ankylosing spondylitis.

Ankylosing spondylitis is one of three sub-types of a type of inflammatory arthritis called axial spondyloarthritis. Axial spondyloarthritis is a chronic inflammation of the spine and joints. It is a painful and progressive long-term condition for which there is no cure. It is unlike conditions such as osteoarthritis, which is often associated with older people and the wear and tear that comes with ageing.

Axial spondyloarthritis, often abbreviated to axial SpA or AS, tends to present in the late teens or early 20s, with the average onset being just 24. In my own case, I first presented with symptoms at 16. As well as the stiffness and pain that one might expect from an arthritic condition, axial SpA is also associated with a range of complications and comorbidities, including uveitis and psoriasis. But it is perhaps the less visible complications of AS that can be the most debilitating. Many suffer from severe fatigue, as well as flare-ups and stiffness.

The condition presents itself in a period when most people are at a crucial stage of their lives, looking to build careers, start families and forge social relationships. I well remember my early 20s, when I was starting out in my first job after university, before I was prescribed the treatments that I am on now. When I got home after doing an eight-hour day in the office—something that most people would take in their stride—I crashed out on the bed, completely exhausted from a normal day at work.

[Munira Wilson (Twickenham) (LD)]

I congratulate the hon. Member on securing this important debate. My husband also suffers from ankylosing spondylitis. Like the hon. Member, he started getting symptoms when he was about 20, and it took him about 10 years to get diagnosed. He was exhausted and struggling to work, and there were days when I had to help him put his socks on because he could not bend over. Does the hon. Member agree that the shocking delays in getting a diagnosis have a massive impact on quality of life, as do the difficulties that people have in accessing the right treatment? We need to improve awareness, particularly of the National Institute for Health and Care Excellence guidelines on the treatments available.

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[The Minister for Care (Helen Whately)]

I congratulate my hon. Friend the Member for Gedling (Tom Randall) on securing this debate and on bringing the House’s attention to the need for earlier diagnosis of axial spondyloarthritis. May I say how important it is that he has brought his personal experience to the debate? The House should appreciate the courage he has shown to speak up about his own condition—something that cannot be easy, but that is an example. I feel strongly that all of us bring our own experiences to our work. That is one of the reasons it is important to have a diverse House of Commons. He has brought his own extremely painful experience to bear. I am confident that simply by doing so, he will make a difference for many others who suffer from this painful condition or who may do so in the future.

My hon. Friend rightly highlighted how critical it is for those with axial spondyloarthritis to get the right diagnosis and get it quickly, and to have their symptoms taken seriously by all healthcare professionals. It is clearly incredibly important to ensure that people can access the right sort of care at the right time, as it can prevent the potentially devastating impact of the condition on quality of life. I very much appreciate from his account and from others I have read how the condition affects people and their loved ones. We must do all we can to reduce the impact on people’s physical and mental health, and I want to do so.

As my hon. Friend said, axial spondyloarthritis, which may also be referred to as axial SpA or AS, is a form of inflammatory arthritis that most commonly affects the spine. It is a painful long-term condition that currently has no cure. As well as affecting the joints in the spine, it can affect the chest, the pelvis and other joints, ligaments and tendons. Unfortunately, AS is often misdiagnosed as mechanical lower back pain or diagnosed late, leading to delays in access to effective treatments. It is estimated that approximately 220,000 people, or one in 200 of the adult population in the UK, have the condition.

As my hon. Friend said, the average age of onset is relatively young at 24, with patients having to wait on average eight and a half years before diagnosis at an average age of 32. That is clearly far too long to be waiting for a diagnosis, because left untreated the condition can lead to irreversible spinal fusion, causing severe disability. That makes a rapid referral to specialist care for those with any signs or symptoms crucial to treatment and to preventing those kinds of outcomes.

I recognise that AS can have a devastating effect on the quality of life of people who sadly go undiagnosed or misdiagnosed for far too long. This must get better. It is clear to me that early diagnosis and treatment are the key to preventing the development of other serious conditions further down the line and to improving the quality of life of those who suffer from this condition.

We recognise that one major reason for the delays in diagnosing axial SpA is a lack of awareness of the condition among healthcare professionals and the general public. That can take many forms: a lack of awareness of different types of arthritis; a lack of knowledge about the differences between inflammatory and mechanical back pain; or misunderstanding that AS affects similar numbers of men and women. Educational interventions to improve the level of awareness should lead to improvements in earlier diagnosis, and a range of materials are being produced to this effect. For example, an online training module on AS for GPs has been produced by the Royal College of General Practitioners.

In June this year, the National Institute for Health and Clinical Excellence published its managing spondyloarthritis in adults pathway, which has been well received by patient groups and charities. This set out recommendations for healthcare professionals in diagnosing and managing axial SpA in adults. It describes how to improve the quality of care being provided or commissioned in this area, both through guidance and via an associated quality standard. I completely agree that we would expect providers and commissioners to be following the guidance and recommendations in this area so that we can improve the overall rate of earlier diagnosis. It is not only important that we have this guidance but that it will be within the pathway that the APPG and my hon. Friend have argued should be put into place in practice.

[Munira Wilson]

While I welcome the guidance and the pathway, what does the Minister suggest can be done to tackle the clinical conservatism that we quite often find among specialists even once the diagnosis is made? In my husband’s case, the rheumatologists said to him, “You are far too young for us to move you on to the more advanced treatments”, so he was living with huge amounts of pain on just very mild painkillers and steroids. It was only because we happen to live in London that we got him re-referred to a world-leading specialist in the field who then put him on anti-TNFs. He is now able to be the primary carer of our two very young, active children, which he could not do otherwise. Not everybody has that luxury, especially if they live in a rural area.

[Helen Whately]

The hon. Member makes a really important point, again drawing from her own personal and family experience, about the importance of awareness of what is the best treatment for this condition. If she would like me to do so, I am happy to take away her specific point and look into how we can address the need for improvement in the treatment, as well as her general point about needing a better pathway. I am also happy to meet my hon. Friend the Member for Gedling, as he requested, to talk further about how we can make more progress on the right treatment for this condition, and awareness of it.

Coming back to the overall points about what we can do to improve the treatment, the NHS long-term plan set out our plans to improve healthcare for people with long-term conditions, including axial SpA. That includes making sure that everybody should have direct access to a musculoskeletal first-contact practitioner, expanding the number of physiotherapists working in primary care networks, and improving diagnosis by enabling people to access these services without first needing a GP referral—in fact, going directly to speak to somebody with particular expertise in the area of musculoskeletal conditions. The hon. Member for York Central (Rachael Maskell) intervened to make a point about the demands on physiotherapists. I have asked to be kept updated on progress on delivering the expansion of the number of physiotherapists in primary care networks and, more broadly, on the implementation of the NHS long-term plan. We do indeed need to make sure that we have sufficient physiotherapists to be able to deliver on that. I anticipate that that should have a positive impact on the problem of delayed diagnosis for a range of conditions, and particularly for this specific condition.

While better education and awareness of AS should improve the situation, there is clearly more that we can and must do to understand the condition. The National Institute for Health Research is funding a wide range of studies on musculoskeletal conditions, including AS specifically. That research covers both earlier diagnosis and treatment options for the condition, so that we continue to build our understanding of good practice and improve both the treatment and the outcomes for those who have the condition.

In conclusion, I want to pick up on my hon. Friend’s point about the importance of awareness and the call for an awareness campaign by the APPG, and I should of course commend the National Axial Spondyloarthritis Society for its work in this area. My hon. Friend mentioned that there is clearly a huge amount of public health messaging going out at the moment, but I hope the time will come when we can gain more airtime for this particular condition. However, the fact that we are having this conversation in the Chamber is in itself a step towards raising awareness of the condition, and so, too, is all the work that is going on; that is important as well, because along with having the policy and the pathway, we must make sure it is put into practice.

I congratulate my hon. Friend again on bringing this subject to the attention of the House and on the work he is doing and the effect that this will have. I truly want to support him and to do our best for all who suffer from this condition and may suffer from it in future, to ensure that we achieve much earlier diagnosis and treatment and better outcomes for those with the condition.