National Arthritis Week

Lyn Brown Excerpts

Thursday 20th October 2016 Westminster Hall

[Lyn Brown (West Ham) (Lab)]

I thank the hon. Member for Strangford (Jim Shannon) for securing this important debate, and for his excellent contribution. I also thank the charities, such as Arthritis Research UK, that work every day to reduce the suffering brought about by joint disorders.

Last week was National Arthritis Week. The pain of arthritis is often invisible. Trying to explain its constant, chaotic pain to someone who has not lived with it can be very hard. A survey conducted by Arthritis Research UK found that 28% of women with arthritis feel that people do not really understand the pain they face. Despite trying to talk about it, they feel lonely with the disease. That is why today’s debate is so important. By talking about arthritis in this place, we can begin to tell people that they are not alone.

I want to do that in a literal sense, by sharing my experiences of arthritis. In March 2015, we were two months away from a general election, which, as Members on both sides of the House know, is a difficult, stressful and busy time to be a politician. As part of the shadow ministerial team, I was driving up and down the country with my tiny dog Cara in tow, visiting fire stations and sharing Labour’s plans for the future of the fire service. It should have been an exciting spring, sharing a vision that I was passionate about, and introducing my little four-legged friend to a bunch of soppy but very brave firefighters. However, it was made difficult as I had been experiencing mobility problems for quite a while, and it was not unusual for me to be in constant pain and experiencing stiffness. However, until that point I had been able to fight through. I had not considered that I had a condition.

In March, I finally hit a brick wall. I felt completely and utterly drained of energy and could barely walk more than a few steps. I had to drag myself up the stairs of my house by pulling on the bannister. I was unable to stand at street stalls for any length of time, or go canvassing. I contacted voters only on the phone, or at meetings where I could be completely sedentary. I needed help putting on my bra. I felt humiliated, embarrassed and a complete and utter failure. At the worst, I was struggling to stay awake for more than six hours a day. It can be imagined what that did to my mental health. The stress of not being able to fight that election on my own terms was overwhelming. The tiredness and pain were looked after by a specialist, but throughout that period I had no idea whatever of what the problem was. At times like that, the internet is not a best friend. My imagination was in overdrive. Only the support of good friends, comrades, my wonderful husband and my family got me through that election.

Let me be clear. I do not want to come across as some kind of stoic hero. I am not. I cried, mainly in my doctor’s surgery as I was trying to get some answers. The staff must have thought I was completely wet. I found it really difficult to cope with the condition and the demands of work at that time. I know that many people have that feeling, and it is little wonder that musculoskeletal conditions account for one in five working days lost to ill health in the UK.

Despite being referred to my arthritis service in November 2014, it was early May 2015 before I was finally diagnosed with seronegative inflammatory arthritis. I now know that fatigue is very common among sufferers of arthritis due to pain, stress and sleep disturbance. More specifically—this is not very well known out there—fatigue is a symptom of inflammatory arthritis. Chemicals called cytokines are found in the inflamed tissues and cause extreme fatigue.

At that point I was put on a course of methotrexate, which thankfully caused the aggressive nature of the condition to begin to recede, but it was still quite aggressive, and I needed additional medication to get me to where I am now, taking methotrexate and injecting myself every fortnight with CIMZIA, a biological injectable medicine. The pain and restrictive movement have now subsided considerably. A number of colleagues have told me as I walk around the House that I seem to be doing much better, and I am.

When I first met my arthritis specialist, she asked me what my goals were. I said I wanted to be able to walk Cara again, to wear heels and to play tennis, which would be some feat as I have never played tennis before. She laughed and said, “Let’s keep this realistic and start with walking the dog.” I am happy to say that with the support of the NHS I can now walk Cara for over an hour, almost entirely pain-free. At Christmas last year, I bought a pair of blue polka dot shoes as an incentive and a symbol of hope. I have worn them twice and, although they are not as high as those of the Prime Minister, or indeed our former shadow Chief Whip, my right hon. Friend the Member for Doncaster Central (Dame Rosie Winterton), they are a symbol of the progress I am making. What is more, I have just enrolled on a course of tennis lessons, which I will start in March next year, two years after I hit that dreaded wall.

I have had good treatment, advice and support, and I thank my doctors for that from the bottom of my heart. Ten million people in the UK suffer the pain of arthritis and not all are as lucky as I have been. Moreover, I am told that with an ageing population and rising physical inactivity, the number of people living with arthritis will rise. We must make sure that every patient has access to excellent treatment. Due to the high cost of the drugs and the guidelines of the National Institute for Health and Care Excellence, most patients have to wait at least a year before they can access the transformative biologics that have made such a huge difference to my life. I had to wait just over a year, and that year was hard.

The wait means that we are not controlling the condition at an early stage or enabling patients to stay active, independent and in employment. Surely this wait is not cost-effective to industry and the economy. I know that this is ultimately an issue for NICE, but making these drugs more widely available will transform arthritis care for many, as it has done for me. Let us be honest: there are problems with traditional treatments. Although methotrexate has been really important for me, it can have long-term negative effects on the liver, but coming off it is certainly not an option for me at the moment. I urge the Government to support research on the long-term effects of existing drugs, and to continue to support vital research into new treatments and life-saving drugs, so that we can help people to live pain-free into old age.

I will be positive: there have been substantial breakthroughs in arthritis treatment as a result of research funded by Arthritis Research UK. They include treatment for rheumatoid and inflammatory arthritis, and treatment to prevent miscarriages in women suffering from antiphospholipid syndrome, which again is something I have. If only I had known a couple of decades earlier.

World-leading scientists, working in British institutions, such as Leeds, Birmingham and Keele Universities, the Kennedy Institute at Oxford, and St Mary's hospital, London, developed these treatments. The biological treatments I am on have been developed here in the UK. We should be so proud of these achievements, but we must make sure that our medical research sector remains at the cutting edge. Now more than ever, the UK’s excellence in medical research is under threat. Many of us warned before the EU referendum that funding for medical research would be hit if we voted to leave. Vicky Forster, a researcher, wrote in The Guardian:

“many scientific disciplines will lose EU funding post-Brexit”.

That is certainly the case with arthritis.

Figures provided by Arthritis Research UK show that between 2011 and 2015 the EU contributed over £2.5 million to its projects. Those researchers have gone on to secure more than £18 million of European funding to support the next stage of their work. It should be a priority for the Government to maintain our world-leading medical research sector. To do this, they need to ensure that overall investment in UK science and research is protected and grown in the longer term.

The risk to research posed by Brexit does not stop at funding. Sir Paul Nurse, director of the Francis Crick Institute, said:

“Science thrives on the permeability of ideas and people and flourishes in environments that pool intelligence, minimise barriers, and are open to free exchange and collaboration.”

Leaving the European Union threatens this melting pot of ideas. In 2014-15, Arthritis Research UK committed more than £30 million to research that was hosted in the UK, but had collaborators in 13 European Union countries. If the Government want to make sure that our medical research sector remains as vibrant and as successful as it is, it is important to maintain the current ease with which those involved in medical research are able to travel and work across the EU and the UK.

We should be truly ambitious as a country and aim to expand arthritis research and medical research more generally, not merely preserve what we have. I have been told that structures need to be in place to encourage our NHS clinicians to participate in research. At the moment, this is not possible due to the demands on the NHS and a medical culture that puts research second.

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

I commend my hon. Friend on making this excellent debate so moving. She shows how important this issue is. She is a living, breathing example of why research is so necessary. She looks 10 years younger than she did last year.

[Lyn Brown]

rose—

[Mr Betts in the Chair]

I say to the hon. Lady that four other hon. Members want to speak, and there are only 20 minutes left.

--- Later in debate ---

[Lyn Brown]

In conclusion, Mr Betts, I hope that sharing my experience today has helped to play a small part in letting people who live with arthritis know that they are not alone. I was lucky to have good treatment. I can now walk Cara, wear heels and look forward to playing tennis. I want the Government to make sure that the UK remains a world leader in medical research, so that we continue to find ground-breaking treatments and more of the 10 million people living with arthritis can live their lives relatively pain-free.

[Several hon. Members rose—]