National Arthritis Week

Sharon Hodgson 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—

--- Later in debate ---

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

It is an honour to serve under your chairmanship, Mr Betts.

Today we are debating arthritis and what more can be done to help those who suffer from this terrible health condition. It is very welcome that the Backbench Business Committee allowed this debate to happen today, which is in arthritis awareness week and so soon after World Arthritis Day. I also thank the Members from across the House who secured the debate with the Backbench Business Committee, and the hon. Member for Strangford (Jim Shannon) for leading the debate this afternoon. He eloquently and clearly set the tone, and I thank him for that.

As we have heard, this condition can often go unnoticed or ignored by individuals and wider society, and I hope that the awareness work seen this week has helped somewhat in changing that, along with the role that everyone here has played in supporting that culture change. Nearly 10 million people in the UK live with arthritis. The symptoms can vary; there are over 200 known types of arthritis and rheumatic disease. The symptoms include inflammation of the joints, pain, fatigue, stiffness and difficulty moving. It is quite a common misconception that arthritis is a health condition affecting only the elderly, but it can often affect all ages. That is why it is important that we raise awareness, and that more be done to educate the public on the symptoms, and on the support and help that is out there.

However, we must also be aware that, given the ageing population, more people will suffer with arthritis. The number of sufferers is expected to rise by 50% by 2030. It has to be said that the Government’s short-sighted cuts to public health grants will only cause havoc if the proper finances are not put in place to address our nation’s health.

Arthritis may not be a killer, but it does attack the way of life of many people. As has been put so eloquently today, this condition can make life a very painful struggle, with one in 10 people saying that they live with unbearable pain, day in and day out. The words of those who suffer with this condition can make the strongest cases for reminding us just how tough it can be to live with arthritis.

In the words of Sharon—I am not talking about myself in the third person here, Mr Betts—who suffers with psoriatic arthritis,

“It’s the forgotten condition that no-one thinks is important. It affects everything. It’s exhausting, depressing and makes you feel angry and frustrated.

It robs you of the life you thought you were going to have, the one you planned with your family. It robs you of a sense of purpose. You can’t do what you want, when you want, it’s unpredictable.

Life has to be adapted and constantly changed. The drugs make you feel sick and depressed and have side effects as long as your arm. It becomes important not to look back at what is lost and make an effort every day to look forward and think positively. But it’s invisible, other people don’t see any of that, you just look a bit stiff.”

Those are extremely powerful words and should be a reminder to us all of how important it is to do more to help those suffering with arthritis.

Hearing the stories and experiences of those who live with the condition is important to help raise awareness. That is why the aim of the awareness campaign “The Future is in your Hands” for World Arthritis Day last week was to highlight the stories of those who suffer. It reinforced the comments made by the chief medical officer back in 2012, who said that osteoarthritis, the most common musculoskeletal condition, is a

“generally unrecognised public health priority”.

The Government must listen to contributions of medical experts such as the chief medical officer, and to the expert opinion of those who experience arthritis. They must then act to do more to help those suffering with the condition.

The Government could help to prevent the development of arthritis with preventive measures that relate to obesity and physical activity. Studies have shown that obesity is the single biggest avoidable cause of osteoarthritis in weight-bearing joints. With two out of three obese people developing osteoarthritis, it is important that we seriously get to terms with addressing obesity; that will create an environment in which those suffering with arthritis can flourish, rather than struggle.

One key way to alleviate symptoms and support people who suffer with arthritis is by promoting physical activity, as it has been shown that regular physical activity can be beneficial in helping to reduce the impact of the condition on people’s lives. My hon. Friend the Member for Neath (Christina Rees), who is no longer in her place, pointed out that it was a lifetime of sporting activities—she is a very well-known squash player—that probably caused, or exacerbated, her arthritis. However, the National Institute for Health and Care Excellence has published clinical guidelines that recommend exercise as a core treatment for people with arthritis, irrespective of the severity of their condition.

We need to know which services are out there, so that we can help people acquire the recommended treatment. That is why it would be beneficial for the National Audit Office to conduct a review into physical activity services for people with arthritis. That would help to ensure that we, as policy makers, have the necessary information to drive the policy agenda, and would help to map areas with a shortfall in support and services for those with arthritis. I hope that the Minister will shed some light on plans to undertake that work. Such an investigation would also be important in the light of the cuts to public health grants under this Government. Those cuts are a false economy, and compound the problems accessing services for people who are seeking to manage and improve their lives.

I quoted the following figures to the Public Health Minister at about this time last week from this very spot, but they are worth repeating to the Minister here today. In the autumn statement, the former Chancellor announced further cuts to public health grants, which amounted to an average real-term cut of 3.9% each year to 2021. That translates to a further cash reduction of 9.6%. That is in addition to the £200 million of cuts to public health grants announced in the 2015 Budget. The Minister must bear those figures in mind when responding to the debate and whenever the Department takes action on public health issues. It really is a false economy to cut funding to already overstretched and burdened public health services, as that will obviously exacerbate the problems with those services in the long term.

The need for further awareness of arthritis and its symptoms was clearly shown in a UK-wide survey of more than 2,000 people conducted by Arthritis Care last year, which found that more than a quarter of arthritis sufferers had waited two years to seek help after their symptoms began. When asked why, some 52% said that it was because it did not occur to them that they could have arthritis, and 28% felt that nothing could be done to address their arthritis. I hope that those who have listened to this debate have heard, loud and clear, that help is out there, and that delaying seeking that help will not aid them or their long-term health and wellbeing. That point was made eloquently by my hon. Friend the Member for West Ham (Lyn Brown), who, I think hon. Members will agree, looks 10 years younger than she did a little over a year ago.

Raising awareness is vital. Last week, world-famous performer Robbie Williams gave a candid interview explaining that he suffers with arthritis and describing the impact that has had on his performance; as a Robbie fan, that concerns me. The more we talk about the condition, and the more that high-profile people, such as the MPs here today, talk about their experiences, the better.

There have been so many eloquent and personal accounts in this debate. I particularly mention the brave and moving account of my hon. Friend the Member for West Ham. She will be playing tennis soon with our own parliamentary tennis champion, Mr Speaker, and I, for one, definitely want a front-row seat for that one. My hon. Friend is a true inspiration to the 10 million arthritis sufferers across the country.

I hope that the Minister has listened not only to the debate and contributions from Members present, but to the voices of those outside this place who have called on the Government to do more for those living with arthritis and the pain that comes with it. There are many ways for the Government to do something, and ideas have come from across the House to steer the Minister in a direction that will help the 10 million people who suffer with the various levels of pain associated with arthritis. Let us hope that this time next year, when we recognise National Arthritis Week again, we will have helped more people to lead a healthier, happier and more pain-free life.

--- Later in debate ---

[David Mowat]

Don’t take it as a compliment. It has been a long day.

It seems extraordinary, thinking about some of the subjects we debate, that it has been five years since we have debated this subject in the House of Commons. The debate has been such a pleasure, and I am sure that hon. Members here will see to it that it is not five years before we debate it again. An objective of having a debate in Westminster Hall is to raise awareness. People watch these things, so it is right that we do that and it is important that we do it again next year.

I have been a Minister for about two months, during which time I have met many people, so it has probably been remiss of me not to have met with Arthritis Research UK yet. I am keen to do that. Its representatives are pushing at an open door if they would like to come and see me. As the hon. Member for Coatbridge, Chryston and Bellshill (Philip Boswell) said, it is about action, not words. We will organise that meeting if Arthritis Research UK would like it to happen.

Several hon. Members have mentioned the statistics, but I will repeat them because they are so important. Some 10 million people in the UK—one in six of the population—have an MSK condition. The most common, with 3 million sufferers, is osteoporosis. One in six is an extraordinary figure, and there are 200 variations of MSK conditions. One in 10 people in the UK suffers chronic pain as a consequence of arthritis.

The numbers are mind-boggling. Some 20% of GP consultations are due to MSK conditions, and this at a time when our GP services are stretched in Scotland and in England. MSK conditions account for 30% of GP consultations for the over-55s, and some 7.5 million working days are lost each year. This long-term condition alone costs the NHS between £4 billion and £6 billion, so it is right that we are having this debate.

There have been a number of interesting and useful speeches. Westminster Hall is sometimes a better place to debate such topics. The hon. Member for Strangford talked about lifestyle factors and preventive factors, and he and another Member made an interesting point about DWP and PIP. We need to be more joined up in how we deal with some of these long-term conditions, particularly as they become more prevalent. He also talked extensively and knowledgeably about research—he has clearly been well briefed—and about what we are doing.

The hon. Member for West Ham (Lyn Brown) made an excellent speech about her personal experience, and she emphasised the overlap with mental health. She talked about first suffering from this during her election campaign last year. In fact, it prevented her from canvassing. I note that she got 36,000 votes and her vote went up by 6%. I do not know whether those factors are related. Well done on 36,000. We pass on our congratulations and awe at her performance.

[Mrs Hodgson]

Maybe it was a telephone canvass.

[David Mowat]

Maybe it was. The hon. Lady also talked about the delays to the start of her treatment and the one-year delay before she got the right drugs, which have been so transformative for her. That is an impressive story.

The hon. Lady also talked about the concerns about the consequences of Brexit. The Government have made it clear that, whatever version of Brexit we end up with, science research will continue to grow in real terms and ongoing scientific programmes will continue. I was a remainer, and we often talk about the money that Europe gives to programmes. She said that £2.5 million was given to a particular programme, which should be seen in the context of the £20 billion that flows in the other direction. The real point is that we understand the need for science and will continue to ensure that that funding happens.

The hon. Member for Neath (Christina Rees) made a good intervention about the consequences of sport and the unpredictable flare-ups that she has. She made the interesting point that arthritis can be invisible for much of the time before flaring up. The right hon. Member for Knowsley (Mr Howarth) is right to remind us of the role of carers. I remind Members that we are putting together a carers strategy, which will focus on unpaid carers in particular. That will come out at the end of this year. We are talking to a number of charities about that because it is important, given the stress and strain on our various systems.