Ankylosing Spondylitis

Huw Irranca-Davies Excerpts

Monday 25th February 2013 Commons Chamber

[Huw Irranca-Davies (Ogmore) (Lab)]

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.”

Another says:

“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.

[Jim Shannon (Strangford) (DUP)]

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?

[Huw Irranca-Davies]

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.

[Andrew George (St Ives) (LD)]

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?

[Huw Irranca-Davies]

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 2 April, I will be walking 50 miles at the age of 50 to raise awareness of AS and funds for the National Ankylosing Spondylitis Society. I invite the Minister to join us. Take a walk in our shoes, as people say, and we will show how a little support goes a long way, reduces health and social care costs, helps people to stay active and in work for longer, and gives people a far better quality of life. If he cannot make the walk, perhaps he will agree to meet me and a delegation from NASS and Arthritis Research UK to discuss further our ideas. I thank the Minister for listening and hope for a positive response.