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.
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.
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.
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.
In last night’s Adjournment debate, 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.
I commend my hon. Friend’s bravery in refusing to allow the condition to prevent him from gaining a place in this House and in attempting to draw more attention to the condition. How does the UK compare internationally in terms of the delay that various hon. Members have discussed between the onset of symptoms and diagnosis?
I think in comparable countries such as Germany, France and Italy it is four, five or six years. Certainly, I think the delay to diagnosis in the UK is one of the longest in Europe, and that is something that needs to be remedied. Obviously, during that delay of eight and a half years, the condition can deteriorate considerably. One does not need to be an expert to understand the clinical, economic and human burden of delayed diagnosis.
I congratulate the hon. Gentleman on this timely debate. I have the honour to have the National Axial Spondyloarthritis Society based in my constituency, which is why I have some knowledge of the matter and am involved in the all-party parliamentary group on axial spondyloarthritis. I am sure that he will join me in praising its work and the extraordinary expertise that it brings. The danger is that if people do not have that association or contact, as many medical practitioners do not, it is difficult to diagnose, and therefore, heartbreakingly, young people suffer in pain and do not get a diagnosis when they should. Will he praise the NASS’s work and agree that the NHS needs to communicate about it much more widely?
I am grateful to the hon. Gentleman for bringing forward this debate. Before coming to this House, I was a physiotherapist. I ran an AS group for swimming and exercise and really know the benefits of that. The Chartered Society of Physiotherapy was in touch with me just this week to say that, because of covid, it is experiencing a real shortage of physios for the future and that 2,339 more physios are needed. Does he agree that we need to look back at the NHS work plan to ensure we have the right practitioners in place to support people like him?
I congratulate my hon. Friend on securing the debate on this important issue, and I pay tribute to his bravery in overcoming his condition and ensuring it did not prevent him coming to this House.
I have a family member, a friend and a constituent who suffer from AS, and I know well the problems with delayed diagnosis. My constituent Frances Reid started having symptoms 10 years ago. She went from doctor to doctor to doctor but did not get diagnosed. She was diagnosed only one year ago, and she now has pains across her entire body and needs joint replacements. She is in so much pain that she wakes up eight to 10 times a night. In contrast, a friend from Canada was diagnosed really early. With treatment and exercise, he leads a full life. What lessons can we learn from countries that have quicker diagnosis and what would my hon. Friend like to see here?
My hon. Friend neatly explains the consequences of delayed diagnosis. A recent systematic review of the available literature found that, overall, patients with a delayed diagnosis of AS had worse clinical outcomes, including higher disease activity, worse physical function and more structural damage compared with patients who had an earlier diagnosis. Those with a delayed diagnosis also had higher healthcare costs and a greater likelihood of work disability, as well as a worse quality of life, including a greater likelihood of depression. Those are the consequences of not giving a prompt diagnosis.
We spoke earlier about the National Axial Spondyloarthritis Society, or NASS, which has identified four factors that contribute to delay: a lack of awareness among the public that AS might be the cause of their chronic pain; GPs failing to recognise the features of AS; referral to non-rheumatologists who might not promptly recognise AS; and failure by rheumatology and radiology teams to optimally request or interpret investigations. AS cannot be cured, but reducing the eight-and-a-half-year average delay in diagnosis will lead to better outcomes for those living with the condition.
The all-party group for axial spondyloarthritis, of which I am a vice-chair, suggests three steps that would help to reduce the delay in diagnosis. The first is the adoption of a local inflammatory back pain pathway to support swift referral from primary care directly to rheumatology. Low levels of referral to rheumatology from primary care represent one of the key barriers to achieving an early diagnosis of AS, and a national audit by the APPG found that 79% of clinical commissioning groups do not have a specified inflammatory back pain pathway in place, despite NICE guidelines recommending that.
My hon. Friend makes reference to the NICE guidelines and the quality standard on spondyloarthritis not being implemented by 79% of clinical commissioning groups. Does he agree that that simply relates to primary carers referring directly to rheumatology departments, which is not a cost issue but one of professional education?
My hon. Friend is absolutely right, and that neatly leads me on to the APPG’s second proposal. I appreciate that the NHS is rather busy at the moment with public health messaging of one kind or another, but awareness of AS remains low and support for an awareness campaign would help to significantly raise the visibility of the condition not only among the public, but for example among GPs.
Thirdly, the APPG suggests encouraging the routine adoption of minimum service specifications across the NHS to help to reassure patients, particularly in the context of covid-19 and the difficulties many patients face in accessing key services during the recent lockdown. I would welcome any opportunity to meet Ministers separately to discuss those proposals in detail, if that were possible.
I will leave the last word to Zoë Clark, who addressed the APPG’s last physical meeting in January. She told attendees how, after getting AS symptoms aged 20, incorrect diagnoses and the impact of her condition left her socially isolated and unable to live independently, at a time when she was trying to complete a demanding four-year master’s degree in osteopathy. She said that living with undiagnosed AS was a frightening time and she ended up having to largely sacrifice her social life, due to the difficulties of balancing her degree with the pain and fatigue she regularly experienced.
No one should have to wait eight and a half years to find out what is wrong with them. I hope that we can begin to put that right.
I congratulate my hon. Friend 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.
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.
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. 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.
I commend Tom Randall on his courage in bringing such a personal and difficult matter before the House. Many people will not appreciate that that is a difficult thing to do, and I am sure that he will have made a difference to many by what he has done today. [Hon. Members: “Hear, hear.”] I am pleased that those in the Chamber are in agreement.
Question put and agreed to.