Shortly after I was elected to Parliament in 2002, I found myself hobbling down a corridor in the House of Commons, struggling to make it to the voting lobby in time for a vote. I was in so much pain from my neck, back, hips, knees and ankles. Every step was excruciating. Despite being only 40, and having been an active sportsman, I found myself unable to walk without crutches. I'd experienced this pain off and on since I was in my 20s, always without a diagnosis. I'd attributed it to an old sporting injury, but the pain was debilitating - and making it increasingly difficult for me to do my job.
Fortunately, one of the whips (the MPs who organise parliamentary business) took me to one side: "Huw, go away for a few weeks and get a proper diagnosis. Get yourself sorted, then get back here, because we need you here to vote!" I went home to Wales, spoke to my GP who then referred me to a consultant rheumatologist who specialised in a type of arthritis called ankylosing spondylitis (AS). He gave me a diagnosis and set me on the path to receiving the treatment which has enabled me to return to leading an active and busy life.
My experience is not uncommon, and although I am now able to lead an active life, working to support my constituents in Ogmore, not everyone is so fortunate. I was lucky to receive the care I needed to treat my AS, but too many patients are not referred to the healthcare professionals who are best placed to help them.
AS is a painful, progressive form of inflammatory arthritis, an illness which affects around 200,000 people across the UK. It occurs where some or all of the joints and bones of the spine fuse together and leads to progressive spinal stiffness which may result in curvature of the spine and up to 25% of people with AS eventually develop complete fusion of the spine which leads to substantial disability and restricted movement. It can also lead to problems including psoriasis and inflammatory eye disease. I was lucky not to develop any of these, but many other patients are not so fortunate.
This is why I am really pleased to support the National Ankylosing Spondylitis Society's (NASS) 'AS it is' campaign, now entering its second year. My experience of AS is not uncommon, and many people go for years without a diagnosis - in fact, it currently takes, on average, eight and a half years to be diagnosed with AS. Even with a diagnosis people often find it difficult to receive the care and support that they need.
Physiotherapy can make a huge difference to AS patients' lives, as the cornerstone of treatment for AS, along with anti-inflammatories, enabling them to remain physically active and in work. Referrals to physiotherapists, however, are often not made beyond an initial six sessions when first diagnosed, making self-management of AS much more difficult. Good care for many long-term conditions is dependent on getting the help patients need to them quickly and regularly - the delays and missing referrals are unacceptable.
NASS is campaigning to change that, and has already successfully secured the commitment from the National Institute for Health and Care Excellence (NICE) to develop a national standard of care for spondyloarthritis (the group of arthritic conditions which includes AS). This should be available from 2016 and will enable all healthcare professionals to have a much clearer understanding of the signs to look out for to make a diagnosis and the support which needs to be given once it has been identified that a patient has AS.
More needs to be done. NASS is now asking for support from NHS England to make sure that AS patients have access to physiotherapists and occupational therapists to enable them to stay active and, where feasible, in work. I had symptoms for 20 years before I was accurately diagnosed and given the relevant care which had a huge effect on my life. Now I manage my condition with the correct medication, physiotherapy and regular exercise, which has made a huge difference to my life - both at work and at home with the family. Politicians and healthcare professionals need to support NASS in their work to make access to physiotherapy much more widely available.