Let me begin this debate by posing what may seem a little like a pub quiz question. What do all the following people have in common: Mick Mars, the guitarist for rock band Mötley Crüe; Vladimir Kramnik, the Russian world chess champion; Mike Atherton, the English cricket player; Jens Stoltenberg, the Prime Minister of Norway—and, not forgetting, me? We all have a condition called ankylosing spondylitis—athletes, chess champions and rock gods and Members of Parliament: we can all get it, along with around 200,000 other people from all walks of life across the UK.
Ankylosing spondylitis is not a condition we hear a lot about, yet the 200,000 people with this condition are roughly twice the number who have Parkinson’s disease or multiple sclerosis. Perhaps it is the very name ankylosing spondylitis, which does not lend itself to easy headlines or easy campaigning, although it may also be due to the historical lack of awareness, including among GPs and clinicians, of the condition. AS is often overlooked and misdiagnosed, but it is a type of arthritis that can start when people are young—often between 15 and 35 years of age. It is a type of chronic, long-term arthritis that affects parts of the spine, including bones, muscles and ligaments. The condition can be severe, with around one in 10 people at risk of long-term disability. It is often misdiagnosed or diagnosed late—typically 10 years late—and that was certainly the case with me.
Let me begin by setting out drily and coldly the standard description, and I would like to thank the National Ankylosing Spondylitis Society for its help with that. It says:
“AS usually starts in the late teens and early twenties and can cause lifelong pain and stiffness. There is no cure for AS. It’s a form of inflammatory arthritis mainly affecting the spine and hips, which may fuse over time. Ankylosing means fusing together and spondylitis means inflammation. It can also cause inflammation in other areas of the body, including the heart, the bowel and the eyes. Unless treated and managed effectively, AS will lead to great pain and can render people immobile and unable to work”— and so on. It is worth using the words NASS has collated to illustrate what this means practically. People with the condition have described the type of task that can cause difficulty. One person says, for example:
“Opening and closing the boot of my car is a nightmare for me and makes it so much harder for me to get out and about with my 2 year old and my 5 year old.”
Another draws attention to the problems of simply
“sitting on the grass having a picnic.”
Another says that
“washing my hair and putting on tights” is a problem. Others refer to
“pouring water out of the kettle” or
“reaching high shelves or cupboards”,
and so on. NASS notes that
“people with AS deal with constant pain and stiffness, along with high levels of fatigue. In the early years it is an ‘invisible’ illness with bodies showing no outward signs of the pain and suffering, making it difficult for others to understand what they are experiencing.”
It is worth turning to some of the words that people with AS use to describe themselves. One person says that they feel
“isolated, lonely, fed up with pain, envious of” what they say are “normal people”. Another says:
“I have low self esteem, feel isolated, depressed and in constant pain. I am fed up of swallowing all the tablets and sticking a needle in my leg…I hate the shape of my back and the position of my head. But people always say I have a smile on my face and look so well.”
“I feel overly tired most days. Outside of work my participation in activities has been reducing. I don't spend as much time as I used to socialising with friends and family. I used to be very active and go out in the evenings but now I have early nights instead.”
Every single person with AS will have a different experience, but here is mine. I, like many others, was diagnosed very late in life. In my late teens, I played first division and county badminton, and competed in national competitions. My tennis was not too bad either, and I was a pretty keen leg-break bowler for my school, though my rugby had long gone. But during and after matches I would experience real stiffness and soreness in the neck and the spine. I found it increasingly hard to look up towards the shuttlecock as it descended. However, I thought that this was just routine, as I was extremely fit and active. As the years went by, the stiffness became more routine and more painful, and progressively the flexibility in my spine and my neck grew less and less. At the time, I was working in sports centres, I was coaching sport, and I was still actively playing many sports myself. I thought that it was just part of a sporting life: you end up creaking a little bit.
By my late twenties, the stiffness and the pain were periodically debilitating, and affecting my sport and my general health. I had been to see GPs over the years since my teens. I had been given strong painkillers, sometimes steroids. I had been to see masseurs and chiropractors who had stretched and crunched me, worked out the knots in my neck, and applied various odious potions to me. I had resorted to homeopathic medicines, including a vile concoction involving exotic mushrooms from Russia, complete with a handbook on how to use it, and various mail order medicines. Some of these were harmless but utterly useless. Others were probably directly detrimental to my health and even antagonised the condition.
I thank the hon. Gentleman for bringing this very important matter to the House. This debate will raise awareness, but does he agree that there is also a need for awareness in the benefits system, because I know people in my constituency who have difficulties in getting disability living allowance for this condition?
That is a very important point. People often refer to it as a bad back, growing pains, and as an assortment of other things, but that is a classic case of misdiagnosis. If somebody has AS, it does not go away. It is long term and debilitating and unless diagnosed, it will get worse and worse. The hon. Gentleman is absolutely correct.
At that stage of the development of the condition in me, no one had diagnosed it, so I was trying anything and everything. Then, as luck had it, in desperation I had an appointment with a different doctor because my usual one was away. He suggested that I visit a rheumatologist, and that is where I first heard of the condition called ankylosing spondylitis. There started the beginning of a more coherent diagnosis and a programme of treatment involving appropriate physio- therapy and, when needed, oral steroids or, when the problem was severe, steroid injections directly into joints. By this stage, in addition to the fluctuating but regular stiffness and pain, every few months I would have a major flare-up when my joints, especially ankles, knees and hips, would swell like billy-o and scream with pain. Yet—this is a common refrain from AS sufferers—I would just carry on. Sufferers get our heads down and carry on. We build a tolerance to pain and a dogged determination. It is far from heroic; it is just pragmatic. We have bills to pay, places to go and people to see. We just do not give up very easily.
My situation came to a head here in Parliament. The story I am about to tell will be disbelieved by many, because it reveals—wait for it—the compassion of the Whips Office. Back in 2003, I had been struggling along and getting by, but this was the mother of all flare-ups. I have the acute form of AS, which I sometimes feel makes me fortunate, although I guess that others who have it may disagree. Rather than enduring constant pain and discomfort, I could go for months without problems, then—bang!—when it hits, it hits big.
The early-warning aches, throbs and fatigue started about a month before the crunch. After hobbling slowly for a couple of weeks, I resorted to using a stick, then two sticks, and then switched to crutches a few days later. Progressively, I also looked like I felt—like I had been through 10 rounds with Mike Tyson after a week without sleep. Finally, for one particular vote it took me nearly 15 minutes to walk from one end of the voting Lobby to the other, which is the length of this Chamber. I was in so much pain. At that point, a friendly Government Whip whispered to me, “Huw, get yourself home.” Although that reveals the compassion of the Whips, the following sentence was telling: “Get yourself better, ’cos we need you back in two weeks for a crunch vote.” Still, I take compassion wherever it comes from and whatever the motive.
That episode finally got me on to the treatment that has transformed the quality of my life over the past decade and—touch wood—has meant that I have not had a major flare-up in all that time. I was fortunate to be referred, finally, to an AS specialist and was put on to an innovative and then experimental treatment called anti-TNF—anti-tumour necrosis factor—which is an immunosuppressant that has helped control the condition. It is not without the risk of side effects and I would prefer not to be on medication for the rest of my life, but my quality of life has been transformed. Anti-TNFs, which are now moving on to new generations that can target specific types of AS, will not be right for everyone, but I say to the Minister that, where appropriate, they really must be made available, and investment in research must also be maintained.
People such as me have much to thank Arthritis Research UK for its research in London in the 1990s, which led to successful trials of anti-TNF therapy.
As the hon. Gentleman knows—we have discussed this on a number of occasions—I also suffer from AS and many of my experiences mirror his, although I have never experienced the compassion of those in the Whips Office. Although the condition affects many esteemed people, it also affects many humble people such as me. I was also involved in the campaign for anti-TNFs. Does he agree not only that proper and effective diagnosis is critical, but that it is vital that medicines are properly prescribed and made freely available to those who are suffering very badly from the condition?
That is absolutely right. The hon. Gentleman makes a very important point and I will touch on it when I describe my mini manifesto for how we should move forward on AS. Different sorts of treatment will be appropriate for different people with AS.
Arthritis Research UK is currently funding research into other aspects of AS, including the award of more than £1.3 million to seven experimental arthritis treatment centres that aim to fast-track the most promising treatments to market, research into the genetic factors of AS, and even education resources to help families affected by AS. It is tremendously commendable work.
The Minister is not here just to listen to my or anybody else’s sob story, or to help me regain my prowess on the badminton court or at the cricket crease. I want the Government to help other people with AS, now and in the future, to get the best care, so here is my wish list.
First, we should increase the awareness and recognition of AS. AS has always had a low profile among both the medical profession and the public. Because back pain can have a number of causes, it is easy for AS to be misdiagnosed or to go undiagnosed.
Secondly, we should improve the way in which people with AS are referred. GPs may focus on trying to manage people with lower back pain and not consider referring them on to appropriate specialists such as rheumatologists.
Thirdly, please can we use MRI, not X-rays, for early diagnosis? Clinicians now agree that MRI scanning is a far better option because it can pick up the early joint damage due to AS before it is evident on an X-ray. X-ray changes because of AS may take years to show up.
Fourthly, we should improve access to the right specialists. Experts in other forms of spinal pain are not necessarily skilled in treating inflammatory back pain and associated conditions. For the best outcomes, it is vital that people with AS are managed by the right specialists as part of a multidisciplinary team.
Fifthly, we should improve access to the best medical and surgical treatments. The last decade has seen much improvement in imaging, which is vital to improving the safety and effectiveness of surgery, and treatments that offer better symptom control and quality of life. Early access to those is critical.
Sixthly, we should implement long-term follow-up and management. For the right decisions to be made at the right time, people with AS need long-term monitoring by appropriate experts and ready access to advice or treatment when necessary.
Seventhly, we should develop quality standards and clinical guidelines for AS. In the absence of those, perhaps the Minister will say what can be done now to focus local clinical decision making on AS.
We also have a range of things that we want from GPs. We want them to consider AS as a possible diagnosis if patients have symptoms of back pain and stiffness that are not improving. GPs should refer patients to a rheumatologist as soon they suspect AS. MRI scans should be part of that process. There should be access through GPs to specialists, including rheumatologists, physiotherapists and specialist nurses. There should be access to physiotherapy sessions, either as part of a group or individually. Information should be provided in GP surgeries. There should be access to expert surgical assessment and treatment for people with severe spinal deformity who may wish to have surgery to correct it. There should be regular follow-up appointments and ready access to expert reassessment, including monitoring for bone health, osteoporosis and cardiovascular risk. Finally and critically, there should be information on, and access to, sources of support including physiotherapy, financial advice and psychosocial services.
I say to the Minister, on behalf of 200,000 people who have AS, that that is our manifesto for improved diagnosis, improved treatment and improved quality of life. Despite my late diagnosis and early mistreatment, I am pleased to say that thanks to great, if late, support from tremendous NHS clinicians and staff, I am currently active, sporting and able to be a thorn-in-the-side— or should I say constructive critic—of the Government whenever the need arises.
I am part of a team alongside great friends and campaigners such as Gillian Eames who are taking part in the worldwide “Walk Your AS Off” event for the next month promoting exercise as part of the self-management of the condition. On 1 and
I thank my hon. Friend Huw Irranca-Davies for allowing me to make a short speech.
When I was growing up, it was a role in my family that when the big brother went off to high school, the next brother was sent to live with my grandmother because she was in a wheelchair. She had always been in a wheelchair. Every morning, we had to get her up, and she was a big woman. She had been 6 feet tall when she was a young woman, and she had twisted feet and hands. We had to dress her in the morning, and it was difficult to do. I have memories of climbing on the bed, hauling her up and swinging her legs out to get her in the wheelchair, and getting her dressed. We did not know what it was—we just thought it was serious arthritis.
You may have recently heard me talk, Mr Speaker, about an uncle who was killed in McGurk’s bar. His sister is still living, and I go to visit her in Belfast. I have discovered that her son Joseph has had to retire from the civil service because he cannot move his neck at all. He explained to me that he had ankylosing spondylitis, and I had never heard of it before. He said that he had two cousins in the north—it is good that Members from Northern Ireland are here to listen to the debate—who were suffering from the same thing. He was diagnosed in his 40s, and he now knows that he will not be cured as he could have been if he had been diagnosed when he was young. Like my hon. Friend, he felt aches and pains, and he thought he was getting them from playing in the civil service football team, but it was actually the growth of the same problem in his body. Recently, a 38-year-old nephew, Paul, from Scotland, had a titanium hip joint replacement because the growth of the bone had basically broken his hip. Hon. Members talk about inflammation, but they seem to have a form of it that deals with bone growth. Their bones fuse early and grow in such a way that means they would end up cripples without treatment.
I fully endorse the campaign that my hon. Friend talked about, and I have spoken to the people from the National Ankylosing Spondylitis Society. One problem for my nephew was that he could not convince the people in the health service in Scotland that he had AS. In fact, he had a hip joint replacement that he might not have required if his AS had been diagnosed early enough and he had been treated for what I believe is a genetic disorder that runs in part of my family. Anything that the Government can do to make the matter a priority will save thousands, if not millions, of pounds and will save many people great pain.
I congratulate Huw Irranca-Davies on securing the debate, and I was also delighted to hear from Michael Connarty. I am conscious that, having allowed an additional speaker, we are quite short of time, but if I cannot deal with all the issues that have been raised, I will be happy to write to hon. Members who have participated in the debate to answer their questions.
I know that the hon. Member for Ogmore has worked tirelessly in this cause and speaks with great personal experience. One of the great values of debates such as this is that they focus our minds on subjects that otherwise do not get the attention that they might deserve, and we all benefit from that. I am grateful to him for that.
The Government fully recognise the importance of early diagnosis, of differentiating ankylosing spondylitis from other causes of back pain and of effective drug treatment. The hon. Gentleman spoke movingly of the impact that anti-TNFs have had on him, and the transformation that they have made on his life, along with regular exercise to maintain mobility, has clearly been quite remarkable. He is putting his words into action with his 50-mile walk. I would love to join him, and I would really enjoy his company, but sadly I do not think it will be possible. However, I absolutely agree to the meeting that he asked for as an alternative —it is an attractive alternative, and I look forward to it.
The Government also understand the importance of accessible information and support so that people can take care of their own condition. The ability to self-care is critical, as is regular follow-up by specialised practitioners. I welcome the lead that the National Ankylosing Spondylitis Society has taken in publishing its good practice guide, and I recognise that there is still too much variation within the NHS in the provision of services for AS and for musculoskeletal conditions in general. The question is what should be done to remedy those deficiencies.
The last Administration sought to improve the quality of care for a number of major conditions by means of a rather top-down improvement model, and I totally understand why. It involved a combination of national standards, a uniform national programme with target dates for achieving standards, ring-fenced funding for specific improvement initiatives, demonstration programmes and top-down performance management to ensure that the NHS delivered. The programme was clearly well intended, and we recognise that it achieved demonstrable improvements in a small number of major conditions—coronary heart disease and cancer, for example. However, that model of quality improvement would be totally impracticable and unsustainable if we attempted to replicate it across hundreds of less common conditions.
I recognise that 200,000 people have this condition—as the hon. Gentleman said, that is more than have Parkinson’s and MS—and such a move could overwhelm the capacity of NHS management, not to say that of national bodies such as the National Institute for Health and Clinical Excellence. The entire NHS budget could be tied up with rather inflexible packages of ring-fenced funding. It therefore seems that we need a general model of quality improvement that recognises that real people are different in all sorts of ways, and that increasingly people suffer from more than one long-term condition and need holistic, not atomised, care that meets their particular needs.
Given that time is tight, I will turn to the specific points raised by the hon. Gentleman. I agree completely about the importance of raising awareness of this condition among GPs, especially given the importance and difficulty of early diagnosis. The hon. Gentleman mentioned his long and winding road to finally getting a diagnosis after 10 years, which, as he said, is the experience of many people. I salute the valuable work done by the society’s “GP Awareness” campaign, but we must also recognise that in their day-to-day work GPs have to deal with and recognise a vast number of different conditions and may meet a new case of ankylosing spondylitis only once every few years. There is no easy answer to that dilemma although in future computerised decision aids such as clinical knowledge summaries may help to prompt GPs to recognise or at least suspect more serious but rarer conditions such as AS.
The hon. Gentleman drew attention to the society’s recommendation that MRI scans should be used in the diagnosis of early AS, rather than waiting for damage to become apparent on a X-ray. I understand that a consensus for that proposal is developing among clinicians, but I am not sure whether there are any further actions that the Department or Commissioning Board could usefully take at this stage to promote a greater uptake of such an approach. In a sense, word is spreading among clinicians about the potential value of such a move.
The hon. Gentleman asked whether we should commission NICE to develop a quality standard or clinical guidelines for ankylosing spondylitis, but I am afraid I cannot offer a lot of comfort. As he may be aware, we have recently published a list of all quality standards that we currently expect NICE to develop, following extensive consultation with professional and patient organisations. The list includes a number of the more common musculoskeletal conditions but not AS. In future, the NHS Commissioning Board will be responsible for requesting NICE to develop additional standards. In the meantime, it is open to the National Ankylosing Spondylitis Society to propose to NICE that the quality standard for chronic pain should include a statement on the need to consider other serious conditions for patients presenting with chronic back pain. That might be a valuable thing to do.
The hon. Gentleman drew attention to the importance of support for self-help in managing this condition, and he leads from the front in that respect. As I have made clear, we are in complete agreement on that point, and the model of care to which I have already referred—which of course applies to other conditions and not just AS —will strongly promote that approach.
Finally, the hon. Gentleman invited me on his walk. I wish him well and hope that he gains great fitness as a result of it. I also think that a meeting would be of great value. I am delighted to have had the opportunity to debate this important issue, and I pay tribute again to the eloquent way in which the hon. Gentleman made his case for better care for people with AS. I hope that this debate will help to bring those issues even more into the public spotlight.
Question put and agreed to.