Arthritis Today Spring 2011
Transcription
Arthritis Today Spring 2011
Arthritis Today Spring 2011 | No 152 Back pain How talking therapies can help Patient power The rise of the user group The magazine reporting research, treatment and education Visionary treatment How we’re preventing blindness in children with arthritis Glucosamine at a fraction of High Street Prices Only £8.45 Healthspan Ltd, PO Box 64, Guernsey GY1 3BT. Call Freephone 0800 73 123 77. Prices and voucher valid until 31.05.11. £21.49 120 Glucosamine tablets 1,000mg Buy from Healthspan, the UK’s No.1 direct supplier of supplements Our supplements are only available direct, so we cut out the cost of the middleman: no retail overheads and no hidden extras. That’s why we can afford to use only the very best ingredients and offer them to you at a fraction of high street prices. All of our 150 products are made to the strictest pharmaceutical grade standards (known as GMP). 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Holland & Barrett prices taken from www.hollandandbarrett.com on 20.01.11. Holland & Barrett prices are on single purchase only and exclude any price or multiple purchase promotions. For details visit www.healthspan.co.uk. If you do not wish to receive future product updates, please tick box on the right. www.healthspan.co.uk FREEPHONE ORDERLINE 0800 73 123 77 Feature highlights Visionary treatment Patient power Preventing blindness in children with JIA P10 The rise of the user group P13 Back pain Best foot How talking forward therapies can help Designing better P18 shoes for arthritis sufferers P21 NUTRITION FOR A HEALTHY LIFESPAN Welcome to the spring edition of Arthritis Today. As our readers will be aware – and will have read about in numerous stories in the magazine over the years – arthritis accounts for one in four of all visits made to the family doctor. Yet despite this staggering statistic, many GPs simply don’t offer people with arthritis adequate care or advice. Our new policy and affairs unit plans to start making a noise about this woeful state of affairs. Read more on page 4. Uveitis, or inflammation of the eye, is a common symptom of certain types of juvenile idiopathic arthritis, which, if left untreated, can lead to blindness. On page 10 we report on one young girl’s moving story, and how our new clinical trial hopes to treat this worrying condition more effectively. Ex-soldier Barry Bell went through hell after suffering from painful disc prolapses in his back that led to his retirement at the age of 37. A particular type of cognitive behavioural talking therapy helped him regain a good quality of life, and now we’re running a pilot study of this therapy which we hope will bring relief to many more sufferers of intractable back pain. Find out more on page 13. Patients used to be the passive recipients of care. Not any more. Patient power is on the rise, and here at Arthritis Research UK we’re keen to ensure that patients have their say when it comes to the type of research we should be funding. www.arthritisresearchuk.org Research into practice Questions and answers Focusing on our research in Edinburgh P23 Our resident doctor answers your queries P26 Contents Welcome 180 Glucosamine tablets 1,000mg Ouch! The magazine reporting research, treatment and education. Published by Arthritis Research UK. Our news and chief executive’s column 4 Read about our user group, and that of our primary care centre at Keele, and how they’ve developed into an essential part of the decision-making process, on page 13. Stuart Ralston, our professor of rheumatology at Edinburgh University, is that rare beast – a top clinician who is also a leading academic and researcher into bone diseases. On page 23 you can read about his latest research into osteoporosis and Paget’s disease, and how by volunteering to take part in research his patients then benefit directly from the results. News about the latest research 7 How to prevent blindness in children with arthritis 10 Power to the patient – the role of the user group 13 Let’s talk about back pain 18 If the shoe fits… our footwear design challenge 21 Research into practice in Edinburgh 23 Questions and answers 26 New research awarded 28 The hints box 29 Enjoy your read. Meet the expert 30 Jane Tadman Fundraising 32 Editor, Arthritis Today Arthritis Research UK is a medical research charity entirely supported by voluntary contributions and legacies. For further information about the charity and its work contact us at: Arthritis Research UK Copeman House, St Mary’s Court, St Mary’s Gate Chesterfield, Derbyshire S41 7TD Tel: 0300 790 0400, Fax: 0300 790 0401 [email protected] www.arthritisresearchuk.org Registered Charity England and Wales No. 207711, Scotland No. SC041156. Editor: Jane Tadman Correspondence to the editor should be sent to the address above or to [email protected] Designer: Jonathan Ogilvie Advertising sales: Steven Smith Redactive Media Group, 17 Britton Street London EC1M 5TP Printed by The Website, Leeds. None of the products and services advertised in Arthritis Today are in any way endorsed by Arthritis Research UK. Front cover: Clare Smith, who has arthritis, with her dog Buster. Arthritis Today 03 News News Policy & communications update Taking steps to improve health policy Arthritis has for too long been in the shadows when it comes to NHS and government decision-making on health. Even other long-term conditions, such as diabetes and chronic lung disease, seem to get more attention. Yet 10 million people have their quality of life affected by arthritis. To redress the balance, Arthritis Research UK has recently established a policy and public affairs unit. Its aim is to make the voice of people with arthritis heard by managers of the health system throughout the country. Why do GPs receive so little training on musculoskeletal problems, when so many of their patients come to see them with pain in their joints or muscles? The team will be lobbying to improve medical and clinical education about arthritis. What effects will the Health and Social Care Bill now going through Parliament have on people’s access to services like physiotherapy, podiatry and occupational therapy? We’ll be conducting research to look at variation in the way services are commissioned and to make recommendations on best practice. Charity’s role attracts new funding for childhood bone disease Four centres in Sheffield, London, Birmingham and Bristol have been awarded £18m from the Department of Health over five years to become designated centres for severe complex and atypical osteogenesis imperfecta (OI), starting this month. Professor Nick Bishop, professor of paediatric bone disease at Sheffield Children’s Hospital, a former Arthritis Research UK senior fellow and leading 04 Arthritis Today How can we ensure that doctors and patients have good access to high quality information about the latest developments in arthritis care? We’ll be working with the government to explore how best to get this material into the hands of professionals and members of the public and make it easy to use. These are just some examples of the work we’re planning for the coming months and years. We’d like to hear from you too. What are the main problems you face in the way your care is organised? What changes would you like to see in the system to improve your quality of life? Drop us a line or email us at the address below. No changes can be expected overnight. The NHS is a super-tanker that takes a long while to turn. But it’s about time that arthritis received the priority it deserves. To contact the policy and public affairs team email campaigning@ arthritisresearchuk.org Kirsty Walker, director of policy and comunications expert in brittle bone disease in children, said that the years of financial support from Arthritis Research UK was a major factor in gaining the funding. “The bid needed to have evidence that interventions such as bisphosphonates were successful and the Arthritis Research UK-funded study of risedronate in children with OI that we undertook was a key study for us to cite,” he said. “This should be regarded as a significant success for Arthritis Research UK in terms of substantially impacting on better healthcare provision for children with severe bone disease.” The other three designated centres are Great Ormond Street Hospital, Bristol Royal Hospital for Children and Birmingham Children’s Hospital. Fighting talk from Dr Liam O’Toole, chief executive, Arthritis Research UK Readers of Arthritis Today will be all too aware of the lack of status accorded to arthritis and musculoskeletal conditions by both the government and the NHS. Although these conditions account for one in four visits to the GP, our research has shown that many family doctors are insufficiently trained to treat even very common musculoskeletal conditions. Our new policy and public affairs unit has been set up with the aim of lobbying the relevant bodies to improve the medical and clinical education of medics about arthritis. The team has also already responded to a number of government consultations on the planned health service changes, with the aim of ensuring that the 10 million people with arthritis get a better deal than they do currently. We will keep you informed of our progress in future editions of the magazine. You can read further details on these activities opposite. There’s just room to wish our 64 runners taking part in this year’s London Marathon the very best of luck. We raised more than £75,000 for this event last year and it’s a big date in the fundraising calendar for our charity. www.arthritisresearchuk.org Researchers identify barriers to integrated rheumatoid arthritis care A research team at King’s College London have identified a number of barriers to integrated care of patients with rheumatoid arthritis. The researchers, who were funded by Arthritis Research UK, set out to obtain the views of patients and healthcare providers in inner-city settings to see what they perceived to be the main barriers. They questioned 79 people, including patients, carers, medical and nursing outpatient staff and GPs, via focus groups and face-to-face interviews between 2005 and 2008. Analysis of their responses led the researchers to identify three key barriers that stood in the way of well-integrated care. Firstly, respondents highlighted the importance of early referral to specialists. Many complained of delays in specialist referral and many GPs said they were influenced by their perceived role as “gate-keepers” to secondary care. There are also limitations of ongoing care for patients diagnosed with rheumatoid arthritis, for instance the lack of time that Professor David Scott consultants are able to spend with individual patients. Many patients said that they had insufficient time with their rheumatologist, but welcomed interactions with specialist rheumatology nurses. Finally, respondents reported that issues such as pressure on overbooked clinics affected the management of acute flares. Patients highlighted the importance of being able to access immediate help and support during times of flare or emotional stress, but many specialists admitted that increased pressure on appointments led to long waiting times. Writing in the journal BMC Musculoskeletal Disorders, Professor David Scott and colleagues wrote: “This timely study of the multi-perspective views of recipients and providers of care was conducted during the time of publications of many important reports in the United Kingdom that highlighted key components in the provision of high-quality care for adults with rheumatoid arthritis. “To achieve seamless care across primary and secondary care requires organisational changes, greater personal and professional collaboration and GP education about rheumatoid arthritis.” A spokeswoman for Arthritis Research UK welcomed Professor Scott’s findings. “More clearly needs to be done, including better ways of treating pain and depression, and the long-term goal is still to ensure that all rheumatoid arthritis patients receive the very best care and treatment, irrespective of where they live,” she added. Majority of knee replacements ‘still working after 20 years’ A new study shows that the majority of patients who undergo knee replacement surgery still benefit from improved mobility and reduced pain after 20 years. John Meding, at the Centre for Hip and Knee Surgery in Indiana, said: “Elderly people are using their surgically replaced knees for fairly active lifestyles many years after surgery. If a patient actually lives that long, a well-functioning total knee replacement may allow them to maintain a remarkable functional capacity and activity level not just for five or 10 years, but for 20 years and beyond.” Research supports hip revision surgery in healthy over-80s Hip revision surgery appears to be beneficial in elderly patients whose hip prosthesis has started to fail, new research shows. While hip replacement surgery can provide much-needed pain relief and improve mobility for patients with severe osteoarthritis, some patients find that the function of their implant starts to decline after a number of years. In addition, ageing joint implants may become loose, suffer from wear or develop an infection. Scientists at Geneva University Hospital in Switzerland enrolled two groups of patients to see whether hip revision surgery was less effective in older people. They analysed 84 patients over the age of 80 and a further 241 under-80s, all of whom www.arthritisresearchuk.org underwent revision surgery between 1996 and 2008. Researchers found that over-80s typically experienced a significant improvement in symptoms and reported satisfaction with the outcome of their revision surgery. More than 84 per cent of older patients reported feeling no or only mild pain, compared to 79.8 per cent of younger patients. However, the study authors observed that medical complications were more common in older patients than younger ones, as were dislocations in the first year and post-operative fractures. Researcher Dr Anne Lubbeke told the American Academy of Orthopaedic Surgeons’ annual meeting: “We encourage patients older than 80 to have revision surgery in terms of pain relief and function. But we also tell them they need very good medical preparation before the operation.” A spokesperson for Arthritis Research UK welcomed the findings. “The challenge for researchers is clearly to further refine revision techniques, but also to produce longer-lasting hip replacements so that revision surgery becomes redundant,” she added. Arthritis Today 05 GREAT VALUE OFFER FOR ARTHRITIS TODAY READERS Such Great Value SO MUCH INCLUDED Services of a Travelsphere Tour Guide Return scheduled flights to Rome, returning from Naples Seven nights’ accommodation, four nights’ half board and three nights’ bed and breakfast Welcome drink Optional excursions to St Peter’s & the Vatican, Capri, Amalfi Coast, and Pompeii A two-centre holiday with flights from Gatwick Rome & Sorrento 8 DAYS FR £599 OM This two-centre holiday has something for everyone – an outstanding blend of the superb sights and cosmopolitan atmosphere of Italy’s capital, combined with the style and beauty of the idyllically situated resort of Sorrento. You’ll start your holiday with a three night stay in Rome. We then head south for a four night stay in popular Sorrento, overlooking the fabled Bay of Naples. DAY 1 - UK/Rome Depart on your scheduled flight to Rome. On arrival, transfer to your hotel. Meals: D DAYS 2 & 3 - Rome Free to relax and enjoy our excursion programme: Meals: B The following excursion is included: Rome - A full day tour with city guide featuring major sights including the Colosseum and the Vatican City. The following excursion is optional: St Peter’s & the Vatican - This unforgettable excursion to the Vatican city features a visit to the magnificent Basilica of St Peter’s which dominates the Rome skyline with it’s impressive dome. We include entrance to the Vatican museums. DAY 4 - Sorrento Leaving Rome we head south, visiting Montecassino Abbey and the British Commonwealth World War II cemetery before continuing to Sorrento. Meals: B/D DAYS 5 TO 7 - Sorrento At leisure in this most endearing of resorts, set on a spectacular headland with magnificent views across the Bay of Naples. Sorrento combines a cosmopolitan atmosphere with a truly Italian style. Take time to wander through the old cobbled streets of the historic centre sample the delicious wines and culinary delights of this region. During your stay we offer the following superb selection of optional excursions: Capri - A full day excursion including a short ferry crossing to the wonderful island of Capri; visit the villages of Capri and Anacapri, the Gardens of Caesar Augustus and see the Faraglioni Rocks. Amalfi Coast - A full day excursion along the stunning coastline with free time in the picturesque town of Amalfi. Pompeii - A half day trip including a guided walking tour of this ancient city of the Roman Empire, frozen in time when nearby Mount Vesuvius erupted in 79AD and buried the entire area under a layer of hot ash. DAY 8 - Naples/UK Transfer to Naples airport for your return flight to the UK. Meals: B YOUR HOTELS In Rome you will stay in the four star Hotel Pinewood. All bedrooms feature satellite TV, hairdryer, minibar and a safe. The hotel is five minutes from the subway. In Sorrento you stay in the three star Hotel Tirrenia, which has a lounge/bar, restaurant, TV room and lift. All bedrooms feature private facilities, telephone and TV. Meal Key: B = Breakfast, L = Lunch, D = Dinner To book call 0800 987 5054 Opening hours: Monday to Friday 9am – 8pm, Saturday 9am – 4pm, Sunday 10am – 3pm. or visit travelsphere.co.uk/arthritis Dates & Prices HOLIDAY REF: FIRS GATWICK British Airways – Depart 1405 hrs / Return arr. 1815 hrs May 24 £755 Sep 06 £775 Oct 04 £705 Jun 07 £765 Sep 13 £775 Oct 11 £599 Jul 05 £765 Sep 27 £705 Research news Rheumatoid arthritis researchers move closer to “Holy Grail” Researchers in Leeds are aiming to move a step closer to the “Holy Grail” of patient care by developing a way of accurately predicting which people with early signs of joint pain and inflammation will develop rheumatoid arthritis. Identifying the people most at risk of developing severe rheumatoid arthritis is vital as it means that they can then be treated quickly and early in the course of their disease. Meanwhile, those people whose symptoms will remain mild or even go into remission will not needlessly be put on strong drugs. Currently doctors have limited tools for predicting which of their patients with joint pain will go on to develop rheumatoid arthritis, and those who will not. A team at the Leeds Institute of Molecular Medicine, led by Arthritis Research UK professor of rheumatology Paul Emery, have been at the forefront of research aiming to develop the concept of “personalised medicine” for the past decade. Targeting individual patients with the treatment that is best for them is regarded as the “Holy Grail” of medical research. Now Dr Jane Freeston, NIHR Clinical lecturer in rheumatology, based at the rheumatology department at Chapel Allerton Hospital, has been awarded a clinician scientist fellowship of more than £300,000 from Arthritis Research UK to develop this work further. Dr Jane Freeston Single room from £130 All prices are per person based on two people sharing a twin or double-bedded room with private facilities TRANSFERS Transfer time from the airport to your hotel is approx. 1 hour Travelsphere is the No. 1 for escorted holidays. ABTA No.V5874 With more than 30 years’ experience of delivering the very best holidays. Travelsphere customers know they’ll get the best value possible plus an unrivalled choice of over 700 holidays in more than 80 countries. Our fantastic tour guides make each and every trip wonderful by sharing their extensive knowledge and taking care of all the little details, leaving you free to enjoy every moment of your holiday. Travelsphere is part of the Page & Moy Travel Group www.arthritisresearchuk.org Professor Paul Emery She plans to identify very small amounts of joint and tendon disease in a group of patients with the earliest signs of inflammatory arthritis, by combining cutting edge high resolution magnetic resonance imaging techniques and ACPA antibody testing (which can indicate the presence of rheumatoid arthritis). She hopes her findings can ultimately be translated into a useful diagnostic and prognostic ultrasound tool that can be widely used by clinicians to make treatment more targeted and appropriate for the patient. “Early aggressive treatment can stop this damage so we need to identify and reduce inflammation as early as possible, but currently we can’t easily predict which patients with early signs of inflammation will go on to develop rheumatoid arthritis,” explained Dr Freeston. “With the potential consequences of over-treating patients at a stage where many patients are often unwilling to accept aggressive treatments, doctors are increasingly looking for accurate tools to predict how the disease will progress so treatment can be tailored to the needs of individual patients. That is what we hope to achieve.” Researchers to find best way of treating arm pain More than 500 people suffering from lower arm pain are to take part in a new UK-wide clinical trial that aims to find out the best treatment for this troubling condition. Around five million working days are lost each year due to work-related arm pain, such as tennis elbow, tendonitis and repetitive strain injury. Now a team at Aberdeen University have been awarded £640,000 from Arthritis Research UK to investigate whether patients do best when offered advice to keep active, or whether it’s better for them to rest, while waiting for physiotherapy to start. The trial will also test whether “fast-track” physiotherapy results in a long-term reduction in their lower arm pain compared to physiotherapy given at the time usually provided by the NHS – rarely quicker than six to eight weeks. “Nearly half of all patients that go to their GP with arm pain had pain in their lower arm, and nearly half of these still reported having pain 12 months later,” explained principal investigator Dr Gareth Jones, senior lecturer in epidemiology at the University of Aberdeen’s School of Medicine and Dentistry. “Although lower arm pain is very common, and costly to treat, we don’t know the best way to manage symptoms. Patients are often referred to have physiotherapy, advised to rest and to avoid activities that are thought to be harmful. In fact this approach might be counter-productive and it may be that people with these conditions need to remain active, as we now know is the case with back pain. “We want to make sure patients are given the best advice to reduce long-term pain and disability and which may lead to faster recovery.” The trial is due to start shortly, and patients in Aberdeen, Bath, Cambridge, Southampton and Brighton, between the ages of 18 and 70, will be recruited from June. Dr Gareth Jones Arthritis Today 07 Research news Bristol research aims to motivate people with arthritis to carry on exercising 3 Year Guarantee Made in Britain for over 13 years Win a Willowbrook Recliner Rise to your feet effortlessly in this elegant and stylish custom-built piece of furniture. Combined with the optional built-in, 5-point massage system, this luxury recliner really should be experienced by people who suffer from a lack of mobility and require a luxury solution to lifting and reclining. But don’t just take our word for it; experience a Willowbrook riser recliner for yourself. And you could win one or be a lucky qualifying customer, by simply calling 0800 854 330 today or returning the freepost coupon. So why not enter now? Willowbrook at your service For a FREE home trial call 0800 854 330 Plus 100 lucky • Extensive range of models customers qualify for • Vast range of colours and luxury fabrics £150 trade-in for • 5-point massage system their old chair • Free delivery and installation † and 35% discount • Long & meaningful guarantee • Removal of existing furniture if required New anti-bacterial collar to help mend broken bones and prevent infections Draw date 6th May 2011. “ Since I have had the chair I now get up without strain. Mrs McFarlane, Ayrshire 0800 854 330 or post the Freepost coupon ” With the massage my back is also much improved. For instant entry call FREE today on ***ARTHI/08/04/11/c Mr/Mrs/Ms Please complete your telephone number so we can contact you if you’re a lucky winner. Promoter: Willowbrook, Mercury House, Kingswood Road, Hampton Lovett, Droitwich Spa, Worcestershire, WR9 0QH. Promotion open to all UK mainland residents. By entering you agree to these rules. Prize Draw start date is 8th April 2011, all entries received after 7pm on the 5th May 2011 will not be considered and entries will not be returned. Only one entry permitted per household. Entries made in bulk or by third parties are prohibited. All entries are entered into our monthly prize draw and the winner will be drawn at random at the end of each month. Your chances of winning are based on the number of entries received. We will also select 100 random qualifier prizes. The winner’s prize will be a Willowbrook riser recliner chosen from six designs selected from the Willowbrook range. Optional extras will be charged as per the Willowbrook retail price list. †The 100 qualifiers will each receive £150 trade-in for their old chair and a 35% discount on their purchase of an electrically powered lift and recline chair. There is no cash alternative and the prize is not transferable. Our decision as to the winner is final. Winners will be notified by phone within 10 days of the end of each month. A list of winners can be found at www.willowbrook.co.uk/winners.php Please tick box in coupon if you DO NOT wish to receive product information from Willowbrook. A Bristol researcher is aiming to make it easier for people with knee osteoarthritis to get into the habit of exercising regularly in order to keep their pain at bay. Dr Nicola Walsh, senior lecturer at the University of the West of England, has been awarded a career development fellowship of £345,000 from Arthritis Research UK to develop more effective and cost-effective ways of treating painful osteoarthritis of the knee, which affects around six million people in the UK. Dr Walsh, an exercise and pain management specialist, hopes to make sure people with knee pain not only start to exercise but, more importantly, have the motivation and encouragement to keep on exercising as a way of managing their pain. She aims to set up and assess a series of pilot exercise classes in local community centres to find out if they’re do-able and if people with knee osteoarthritis would actually take part. “Medical guidelines have shown that exercise is an effective way of successfully managing pain and disability; however, patients need to know how to exercise, what is safe and also want a supportive, informative environment to work in,” Daytime Tel Address Postcode Orthopaedic experts at The University of Nottingham are hoping to reduce the rate of infections that often occur in the pinning of broken bones by developing a special collar to counter dangerous microbes. Using technology developed by Dr Roger Bayston in the School of Clinical Sciences, PhD student and nursing specialist Jennie Walker has been awarded an allied health professional training fellowship of almost £160,000 from Arthritis Research UK to devise an anti-microbial collar to prevent bacterial infections associated with broken bones. Pins used to mend broken bones can often lead to infection and up to 40 per explained Dr Walsh, who is based in the Faculty of Health and Life Sciences. “At present there are limited facilities that support exercise in older people, so that most people with knee pain can only expect to receive a short course of exercise in the physiotherapy department before being discharged to manage their problem independently. As such, they’re uncertain as to how and where to continue exercising safely, so eventually their motivation lessens and they lose the benefits of exercise.” As part of her five-year fellowship, Dr Walsh will interview patients, clinicians and healthcare managers to find out what people want, and why they’re not currently getting it. Previous research has already revealed one hurdle: many people value being taught how to exercise by physiotherapists, but don’t always feel safe exercising in classes run by support workers. However, it’s too expensive for a healthcare professional such as a qualified physiotherapist to regularly lead exercise classes. cent of patients being treated in this way develop infections, which can, in the worst cases, lead to osteomylitis (bone infection) and septicaemia. Dr Bayston’s anti-microbial catheter, used in the treatment of hydrocephalus (water on the brain) and severe kidney failure, has already benefitted almost half a million patients worldwide, reducing infection rates by between 60 to 85 per cent. Dr Bayston, who is based in the Division of Orthopaedic and Accident Surgery and specialises in research into surgical infections, said: “We plan to use this same technology to design and test an antibioticimpregnated collar which can be fitted to the skin surface for use in pinning broken bones.” Serious fractures are often treated by inserting metal pins through the skin into the bone and stabilised by a metal frame. He added: “The idea is to develop a cheap and user-friendly device impregnated with a Dr Nicola Walsh Dr Walsh is keen that her research leads to real practical benefits for patients. “Too many treatments which research has shown to work haven’t become standard clinical practice because they’re too difficult to apply in the real world,” she added. “Consequently, treatment doesn’t improve, money and effort are wasted, and people don’t have the best treatment. That’s what we want to do something about.” substance that will kill bacteria before it can work its way down the pin and get into the wound, and can be taken off the patient, washed and replaced.” Ms Walker will carry out a pilot study to determine its usefulness in patients at the Queens Medical Centre, with Dr Bayston and Professor Brigitte Scammell, consultant orthopaedic surgeon. She said: “We need to carry out further research to perfect the collar. As the anti-microbial agents that we will use are already in clinical use we don’t expect to encounter any problem with side-effects.” The researchers also want to find out which bacteria are most commonly associated with pin site infections and whether there are some patient groups who are at particularly high risk of infection. They believe the device could also reduce NHS costs by avoiding the complications associated with infections. Please tick if you would prefer NOT to receive product/service information. Post to: Willowbrook Recliners FREEPOST SWC2458, Droitwich WR9 0BR www.arthritisresearchuk.org Arthritis Today 09 Inflammation of the eye attacked her eyes, pressure built up, leading to real fears she might go blind. Visionary treatment Youngsters with arthritis are at risk of losing their eyesight. Jane Tadman talks to the mother of a little girl whose eyesight was saved by anti-TNF therapy, and reports on a new clinical trial which could make this drug more widely available to younger children. For the parents of young children with severe arthritis, knowing that they face a lifetime of battling against pain and potential disability is hard to come to terms with. Vicki Smith, the mother of a young girl diagnosed with arthritis at the age of just 18 months, had an even greater fear – that her daughter Clare would go blind. If it’s little known among the general public that children and babies can develop arthritis, it’s even more of a surprise for many people to learn that these youngsters are also at real risk of losing their eyesight. Uveitis, or inflammation of the eye, is a common symptom of certain types of juvenile idiopathic arthritis (JIA). Up to 30 per cent of children with JIA are at risk of uveitis, and in one third of these children the disease is of sufficient severity to cause visual loss, cataracts, increased pressure in the eye and blindness. A few months after Clare, now nine, was born, her crying and screaming, high temperatures, rashes, and unwillingness and inability to stand up or walk made her mother suspicious that something was seriously wrong. By the age of 18 months doctors at the Bristol Royal Hospital for Children had diagnosed Clare with JIA and started her on medication that helped but never properly controlled her condition. Three or four times a year the little girl would suffer terrible flare-ups that Clare Smith and Buster the Labrador “When they told me that I was in a hell of a state,” says Vicki. “I was more worried about her losing her sight than anything else.” “Things are so much better” Clare is pictured doing the Noddy Walk for the Portishead branch of Arthritis Research UK at the age of four. “More people should know about what it’s like to have a child with arthritis and how it affects the whole family,” says Vicki. “Until Clare was diagnosed with it I had no idea that children could get arthritis, and a lot of people still think that. When people dismiss arthritis as not serious it makes me angry. People trivialise arthritis but it’s not trivial. They haven’t been in the house when Clare has been screaming in pain in the night. Arthritis emotionally cripples you.” resulted in regular hospital stays. Four or five of her joints would be swollen and painful, and she needed numerous steroid injections to dampen down the inflammation ravaging her little body. Through it all, her family – mum Vicki, dad Tony and 13-year-old sister Alex – tried to carry on with as normal a life as possible, with Clare developing into a high-achieving youngster, despite her regular absences from school because of her illness. For the parents of young children with severe arthritis, knowing that they face a lifetime of battling against pain and potential disability is hard to come to terms with. Vicki Smith, the mother of a young girl diagnosed with arthritis at the age of just 18 months, had an even greater fear–that her daughter Clare would go blind. “It was heartbreaking...” “If you could have seen Clare three or four years ago, it was heartbreaking. She would be walking to school because she didn’t like the buggy, dragging her leg, and I would be there trying not to cry,” remembers Vicki. If it’s little known among the general public that children and babies can develop arthritis, it’s even more of a surprise for many people to learn that these youngsters are also at real risk of losing their eyesight. 10 Arthritis Today Worse was to follow. Clare developed uveitis, which required eye drops every two hours. Doctors gave her infusions of the anti-TNF therapy infliximab, but this didn’t help. As the inflammation www.arthritisresearchuk.org www.arthritisresearchuk.org But following two successful operations to drain the eyes in order to relieve the pressure behind her eyes, doctors managed to get Clare onto another anti-TNF drug, adalimumab. This drug is not currently licensed for children of Clare’s age, and her rheumatologist Dr Athimalaipet Ramanan had to seek permission to use it off licence, on what is known as a named patient basis from the local primary care trust’s Clare with mum Vicki (above) and exceptional funding panel, on account (below) with Buster of the severity of Clare’s condition. Happily, it worked. “Since she has been on this drug and had the surgery everything has kicked in, and for the first time her joint pain – and the uveitis – is being controlled,” adds Vicki. “She only needs eye drops twice a day now, not every two hours and has hardly had any flare ups in the past 18 months. Things are so much better.” Now a happy, tomboyish nine-year-old who loves football and supports Liverpool, Clare is doing well at school although her mum believes there has been real lack of understanding about how arthritis affects her daughter. “Because she looks well most of the time they don’t realise that she gets very tired in the afternoons, and can’t always do what other children do.” Being off school so often also caused problems in that Clare often felt left out and excluded. When Vicki and Clare visited a child psychologist it was suggested that she might benefit from having a dog to keep her company. “We’d talked about getting a dog for ages and hadn’t got round to it, and then I heard Clare talking to one of her friends and she said: ‘If I lose my sight at least I’d get a dog,’” says her mum. “That did it.” Clare and Buster the Labrador are now inseparable. Arthritis Today 11 An advertisement feature by Thomas Sanderson A shade more stylish How Arthritis Research UK is working to prevent blindness in children with arthritis A major UK-wide clinical trial is about to start which researchers hope will prevent blindness in younger children with arthritis, like Clare. With funding of £1.5m jointly awarded by Arthritis Research UK and the National Institute for Health Research Health Technology Assesment (NIHR HTA) programme, the trial aims to recruit more than 150 children with JIA, who are at risk of uveitis. The study will be run by chief investigators Dr Athimalaipet Ramanan, lead consultant in paediatric rheumatology and honorary reader at Bristol Royal Hospital for Children and (and Clare’s doctor since the age of three) Dr Michael Beresford, senior lecturer in paediatric medicine and honorary consultant paediatric rheumatologist at Liverpool Children’s Hospital. 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Terms and conditions apply, for a limited period only. For more information visit www.tsoffer.co.uk Complete your details below for your FREE brochure and to claim 3 for 2 on conservatory blinds. Send to: Thomas Sanderson, FREEPOST, Hants, PO7 7UW Terms and conditions apply. NAME: TELEPHONE NO: ADDRESS: POST CODE: 12 Quote Ref: D229B The trial will test the effectiveness of adalimumab, which is currently licensed to treat adults with rheumatoid arthritis and children between the ages of 13 and 16 with JIA. However, doctors hope that if they can show the drug to be both safe and effective in reducing uveitis, it could also be approved for use in children with arthritis of all ages, in a range of doses. JIA is a form of inflammatory joint disease that affects around 15,000 children and teenagers between the ages of six months and 17 years. Fourteen paediatric rheumatology centres in the UK will start recruiting youngsters this summer. Youngsters will stay on the treatment for at least a year. “If this trial shows that adalimumb is effective, it would be great news for children with JIA whose eyes are affected – children like Clare,” says Dr Ramanan. “Clare was given adalimumab off-licence on account of the severity of her uveitis. This is the whole reason for doing the trial – we need to get the evidence for what is becoming routine clinical practice.” Current treatments are steroid eye drops, and for those with severe disease, methotrexate, which is a standard treatment for inflammatory forms of arthritis. Neither is a cure, but both relieve symptoms to some extent. The trial will test the effectiveness of giving adalimumab by injection every two weeks, with methotrexate – which is known to be effective in treating the symptoms of inflammatory arthritis –compared to methotrexate on its own. Earlier, small studies have shown that children taking adalimumab have shown significant improvement in their uveitis. • Arthritis Research UK’s funding for the uveitis trial has been made possible by the generosity of a major private donor. Patient user groups Three years ago Arthritis Research UK decided to invite patients and frontline clinicians to help make decisions about what research we should fund. Our primary care centre at Keele also uses arthritis patients in developing its research programme. Jane Tadman reports on the rise of patient power in influencing research. At the very first meeting of Arthritis Research UK’s USER panel, set up to provide a voice for patients and nonresearchers to have a greater say on the kind of research the charity funds, it was clear that the scientific community had yet to embrace the concept fully. The grant application forms sent in to the charity by researchers were meant to have been written specifically for a lay audience – so no jargon, no technical language but clear, plain, straightforward English. Grant applications were waffly and poorly constructed However, many of the applications pored over by the members of USER at that meeting – a retired engineer, a safety manager, a GP, an orthopaedic surgeon and an NHS rheumatologist; none of them actively engaged in research – were impenetrable. As well as containing deeply scientific language, the forms the researchers www.arthritisresearchuk.org Carol Rhodes and Professor Pauline Ong, members of the user group at the Arthritis Research UK Primary Care Centre Power to the patient submitted were often poorly constructed, waffly and too concerned with showing off. Shoot forward three years, and things are looking up. After a shaky start Arthritis Research UK’s USER panel now plays an important role in making sure our research is relevant and patientfocused. Nine lay members and seven clinicians form the current panel, with regular recruitment adding new blood. The process has been tightened up. Now USER looks at all project and programme grant applications in which the researcher has to provide a properly structured lay case for support, which Research manager Dr Lisa Croucher compels them to answer very specific “The language researchers use has to questions: be accessible to people without a • What does the researcher want to scientific background, and steering a find out? path between the superficial or banal • Why is this important? and a level of complexity that is beyond the USER panel is difficult,” • How will answering the question acknowledges Dr Lisa Croucher, benefit people with arthritis and Arthritis Research UK research manager, musculoskeletal disease? who is responsible for USER’s activities and continuous development. Arthritis Today 13 and has had a fully-functioning user research group for several years. Swollen feet? Choose Cosyfeet. Members range from someone with a PhD to a manual worker who left school at 14, and Pauline Ong, professor of health services research at the centre admits it was very much a learning exercise in the early days, with familiar tales of scientific language baffling an unconfident lay public. Extra roomy shoes for extra comfort! Over 2 Million Pairs Sold Naomi Spiced Red seam free toe area Cosyfeet footwear is approved by podiatrists to fit: “What we say is taken on board; it’s not tokenism” • Swollen or Mis-shapen feet • Problem toes • Orthotics • Bunions • Sensitive or Bandaged feet The user research group has now developed to the point where they now not only comment on research proposals, but are also involved in creating ideas for research projects. Two members of the group came up with the research question that formed the basis of a successful osteoarthritis programme grant for example – direct evidence of the value of patient involvement in research. 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With Cosyfeet I can be confident that all the good work I’ve done continues because my patients have the extra room and comfort they need.” Paul Young, Podiatrist Joan Spinks, West Yorkshire To request your FREE Cosyfeet catalogue today call our friendly UK call centre on: No Quibble Guarantee 0800 731 0148 and quote AT0511 or order online www.cosyfeet.com (For free P&P enter AT0511 when prompted at the basket) Cosyfeet stockists nationwide Please call or check online for details of a stockist near you ✔ we fit feet others can’t fit Yes, please send me my FREE 144 page Cosyfeet catalogue Mr/Mrs/Ms/Miss/Other Address Postcode Email Telephone Dr Robert Marshall, rheumatologist and member of the Arthritis Research UK USER panel “However, there’s been a steady improvement in the quality of lay summaries,” says Dr Robert Marshall, one of USER’s rheumatologist members. “In the early days some of the submissions were frankly dreadful, reminding me of what my ‘A’ level chemistry teacher told me many years ago – there is no point being a brilliant scientist if you can’t communicate effectively! There is still a range in quality, but we’ve all been impressed by how the scientific community has risen to the occasion.” member David Chandler of his fellow USERs: “It was soon obvious to me that this was not a group that was going to be fooled by woolly applications or scientific jargon; they have real frontline insights into the conditions, whether as a patient or healthcare professional.” Eventually the USER panel’s aim will be to help to move the research agenda along a path set by both the charity’s goals and the aspirations, and needs of the individuals who support the charity and hope to benefit from its research. However, it’s probably still a little early If the researchers themselves are finding to be able to accurately measure it easier to explain their research aims in whether USER is helping to influence user-friendly language, members of the funding practice just yet. USER panel have also grown in Involving patients in research has been confidence. Members have to be going on a lot longer at the Arthritis comfortable with scientific ideas, Research UK Primary Care Centre at confident enough to express their views Keele University. The centre started in a group setting, and not have a using patients’ expertise back in 2000, personal agenda of any kind, despite having arthritis themselves. Says lay One recent development was the creation of a new post of a patient and public involvement coordinator. Carol Rhodes, a former accountant who has fibromyalgia, has produced a glossary of technical terms to help the user group members to understand scientific language, and she has been expanding the group further from a small group of eight people to a “virtual” group of 27, whose expertise can be called upon as and when required. “Our users are now involved in more than 16 projects, in a more formalised way, at different stages of the research,” says Carol. “They are not just dipping their toe into the research projects: they Professor Alan Silman, medical director, who is a member of the USER panel (Dept AT0511), FREEPOST BA1059, STREET, SOMERSET BA16 0ZY www.arthritisresearchuk.org Arthritis Today 15 SPECIAL OFFER: 2 FREE PAIRS * Weak Bladder? Do You… …have weak bladder control? or cough? …wet your pants when you sneeze …regularly have damp underwear? …frequently need to urinate? …have sudden urges to urinate? Try Securi-Briefs. 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Buy online at www.securibriefs.co.uk/SB93 www.arthritisresearchuk.org Arthritis Today 17 When his pain specialist suggested that Barry Bell went on an intensive “contextual cognitive behavioural therapy” course, the former soldier was deeply sceptical. Back pain Let’s talk about back pain An ex-Royal Engineer with 12 years of service, he had suffered from severe back pain and sciatica since a tour of duty during the first Gulf War, when he developed prolapses in several discs in different parts of the spine. The former rugby referee had become a virtual recluse, rarely leaving the house except to attend medical appointments; his confidence at rock bottom. Barry’s back pain had meant he had to leave the armed forces, and although he had managed to find another job, he was taking so much time off undergoing numerous operations to repair his damaged discs, that he eventually gave up work at the age of 37. Can talking about back pain help people to manage it? One man with severe chronic back pain certainly thinks so, and now Arthritis Research UK is running a pilot study which could provide scientific proof and lead to a full-scale clinical trial. “The pain affected my whole life” “I was very moody and had a tendency to a very quick temper because of the pain – I was also very depressed, although didn’t realise it at the time,” says Barry, now 45, from Forfar, near Dundee. “The pain was so bad I couldn’t stand up or sit down; it was like red hot needles jabbing into my leg, without relief, for 24 hours a day. Every time I moved there was a searing pain. It affected my whole life. “When my pain specialist suggested going on this talking course in Bath last year I said to him: ‘If all the operations I’ve had didn’t fix the problem, how will talking about it fix it?’ I didn’t really understand it,” says Barry. “Of course, he quickly told me that it wouldn’t fix my pain, but would help me handle it – he was very clear about that.” Pictured: Barry Bell near his home in Forfar Barry agreed to attend the three week intensive contextual cognitive behavioural therapy (CCBT) course run by psychologists Dr Lance McCracken and Miles Thomson at the Royal National Hospital for Rheumatic Diseases in Bath, along with ten other people with a number of different conditions but a shared experience of severe, chronic pain. He admits that at the beginning he was still only 70 per cent convinced that he would get 18 Arthritis Today Combining the mindfulness technique with some gentle gym work and exercise, Barry found he was able to get over his fear of walking down a busy street. He’d previously been too afraid of people bumping into him and causing him intense pain. He also organised a trip to watch a rugby match with other patients whilst in Bath and enjoyed a couple of pints after the game; something that would have been unthinkable previously. “I learned how to get back into the human race. I had sat in the house feeling sorry for myself for a long time, but the Bath team taught us to question ourselves and to re-train our minds – a bit like you’d re-train a puppy!” www.arthritisresearchuk.org www.arthritisresearchuk.org Barry with his dog Samson Barry wanted to achieve two objectives from his time on the course: to have the confidence to go out for a meal – he’d stopped doing this because of his inability to grip cutlery properly and resulting self-consciousness – and to go out for walks with his partner Trudi, her daughters and their dog. He’s since managed both, with flying colours. “Since I’ve been back from the course anything out of it and the first couple of I’ve gone for loads of walks and the within two days of being home, me and days didn’t go well. Trudi and the girls went for a slap-up “As a group we were shown a clock face meal. It was so good to tuck into that and asked to divide it up into hours, to steak – without dropping my fork! show what we did in a normal day,” explains Barry. “I had been getting up “There’s no stopping me in the morning, going into the living room, getting up and sitting down and now” trying to get comfortable, and so my “I used to make excuses for not doing clock face was completely empty. There things but I don’t anymore and I’m a lot was nothing on it, because I hadn’t happier in myself. To go from the stage done anything. I just stormed out of the I was at to the stage I’m at now is like class and wanted to go home, because night and day. I still have pain, I still get at that moment I realised that that’s all weary, but there’s no stopping me now. my life was about – nothing.” I proved to myself in Bath that I could do it, that you can change your mental “I learned how to get attitude to pain; that it doesn’t have to stop you doing things.” back into the human race” However, after that moment of epiphany, Barry realised he had to commit himself to the course and started to get his head around the concept of “mindfulness”. He explains: “You empty your body and mind and concentrate all your attention on feeling your toes moving, for example; you visualise them, and then you focus on the tingling, and then the sciatic pain, visualising that too, and every time you do it the pain eases a bit.” Recently Barry popped into his local rugby club for the first time in a long while. “Everyone looked at me and said: ’we thought you were dead!’ Then it was like I’d never been away. The course has given me my confidence back, and I have to take my hat off to the Bath team; I’ve got a wee bit of life back. I’d highly recommend it to anyone in severe pain, although it’s not for everyone – I know one of the girls on my course didn’t get much out of it. You have to be really committed.” Arthritis Today 19 CCBT and the Arthritis Research UK pilot study With funding of more than £320,000, study leaders psychologists Dr Tamar Pincus from the Royal Holloway, University of London, and Dr Lance McCracken, from the Royal National Hospital for Rheumatic Diseases in Bath, are aiming to recruit 92 people with severe back pain to test the effectiveness of CCBT compared to physiotherapy in a pilot project. CCBT is slightly different to the more traditional CBT, focusing on acceptance and uses methods of “mindfulness.” CBT has been the subject of clinical trials in the past, but Dr Pincus believes that this current approach is the most rigorous. “In several trials the CBT was not delivered by a trained psychologist, but a physiotherapist with a weekend’s training. We will be using clinical psychologists with three years experience of pain,” she says. “The other key thing is that we’re selecting patients very specifically – people we know have a real psychological need. Not everyone with chronic back pain needs this sort of approach.” CCBT primarily aims to help those whose chronic back pain has led them to withdraw from society and normal life, people who are known as “fear avoidant”, such as Barry. It’s good to talk but can it relieve back pain? 20 Arthritis Today Patients having CCBT choose what their goals are and identify the obstacles standing in their way – such as confusion, fear, pain and fatigue; and step by step slowly change their behaviour patterns. It can sound too good to be true but Dr McCracken points out that three previous studies on the effectiveness Dr Tamar Pincus Dr Lance McCracken of CCBT reported that participants reduced their visits to the GP by 40 “We have to find out if it per cent, that one in three people took fewer painkillers, and three times makes a difference” as many people were in work or training after the course than at the CCBT will be tested against an equally start. rigorously designed physiotherapy regime. “We have one of the best “These are the most severely disabled physios in the country, Alison chronic pain sufferers in the country, McGregor, training up our physios, to but this treatment frees them from deliver a really good programme that their struggling and allows them to includes some cardiovascular work, focus on things that are more some education – everything but pure important and positive,” he adds. psychology,” adds Dr Pincus. “We could The pilot study will show if the team’s be setting ourselves up for a fall by trial methodology is sound and making our control arm so robust, but otherwise we will never find out if CCBT feasible, and if the treatment is works, and, as a scientist, I want to see a acceptable and credible. If so, the definite and significant result. We really team will then aim to develop a have to find out if it makes a difference multi-centre trial that will also look at as the government is spending a great both effectiveness and cost effectiveness. deal of money in developing CBT.” “Step by step they slowly change their behaviour patterns” Barry Bell: a new lease of life thanks to CCBT Patients having CCBT as part of the pilot will have up to eight individual, intensive one-to-one sessions with a psychologist, in a process designed to promote change in both the way they think about their pain, and in their behavior. Lance McCracken explains how it works: “One of the techniques we use is called mindfulness. This means paying more careful attention to our experiences. It includes watching and noticing things – thoughts and sensations, and adopting an accepting and observing attitude towards pain for example, so that its impact reduces. The process of being more conscious, more aware and more focused on what is going on around you means you’re less controlled by influences that can lead to inactivity or failure and less overwhelmed by pain.” Specialist footwear design If the shoe fits... Women whose rheumatoid arthritis affects their feet often struggle to find stylish footwear that doesn’t cripple them. Arthritis Research UK has taken the first steps to finding a solution. One of the most painful symptoms of rheumatoid arthritis is painful feet. People with the condition have compared the sensation in the soles of their feet to walking on broken glass or pebbles, and the toes and joints can often become deformed as the condition progresses. Finding comfortable shoes then is essential, but inevitably these tend to be more practical shoes which can be lacking in style, and not much good for a formal occasion when smart shoes are called for to go with a skirt or dress. research fellow at the Helen Hamlyn Centre at the Royal College of Art and That was the background to a two-day Fiona Candy, senior lecturer at the footwear design School of Art, Design and Performance challenge funded at UCLan. by Arthritis Research UK, held “Women with rheumatoid arthritis find it last year at the really difficult to find the right shoes for University of a special occasion such as a wedding or Central Lancashire an evening out, or in their professional (UCLan). The aim of life. Whilst the women are able to find the challenge was comfortable orthopedic shoes that look to bring together women with Dr Lynne Goodacre rheumatoid arthritis, podiatrists and orthotists with top designers, to produce design concepts with the potential to become a prototype of a smart shoe. “Through previous research we’ve carried out to explore how rheumatoid arthritis affects women’s self-image, we know that the poor choice of comfortable, smart shoes on the High Street limits their clothing choices and has an impact on their ability to present themselves in the ways that they want to,” explained Dr Lynne Goodacre, senior lecturer in long-term conditions at UCLan occupational therapy (who led the project), Julia Cassim, senior www.arthritisresearchuk.org www.arthritisresearchuk.org good with trousers or casual wear, they often described them as being ‘clumpy’ and spoiling a nice outfit.” Not an easy brief then, and it was very important to get all the perspectives – not just from the women with rheumatoid arthritis who acted as design partners but also from the orthotists and podiatrists who understand the need for shoes to provide the right support and to protect One of the designs to emerge from the footwear design challenge Arthritis Today 21 the joint. “We had to make sure that the concepts accommodated the clinical need as well as the aesthetic,” added Lynne. One of the big design dilemmas the teams faced was that the trainers and “comfort” shoes, worn by a large number of people with arthritis, are designed to be functional and practical, whereas in formal shoes style is much more important and comfort secondary; it’s also much more difficult to insert customised inserts or orthoses into court shoes or a high-heeled shoe. shoe to make enough space; wedge heels (recommended height: no more Over a period of two days three teams, than 2.5cms); a rocker sole to relieve each comprising women with pressure on the ball of the foot, a rheumatoid arthritis, designers, wide-base heel to provide stability and orthotists, podiatrists and student grip, and so on. iterns, came up with a range of interesting early design concepts, which Said Lynne: “Inclusive design is based demonstrated how, through using an on the principle of bringing together inclusive approach to design, attractive people with different perspectives to High Street fashion shoes could be inform the design process and come up developed to meet the footwear health with workable solutions. The experience needs of people with arthritis. was highly productive.” Ideas included gel inserts and increasing the internal depth of the way that will transform not only the shoe industry but the lives of many people for whom comfortable yet stylish footwear remains a seemingly unattainable dream.” The design challenge has demonstrated that the needs of people with arthritis can be integrated into fashionable shoes. The next challenge is of raising awareness of the problems within the footwear industry and showing ways in which they can be overcome. The outcomes of the workshop have the potential to be used in a national forum with representatives from the footwear industry to open up the debate and encourage them to think more inclusively in their designs. Arthritis Today will keep you in touch with future developments. • Arthritis Research UK is currently also evaluating the experiences of both patients and health professionals in the way that arthritis-related foot problems are dealt with. Added Julia Cassim: “We’re all united in a desire to take our findings forward in a The Stannah Promise The Mobility Roadshow ...driving mobility forward Modern, slimline design that folds neatly against the wall. • Buy or rent all our stairlifts • 2 year warranty and 2 free services* 30th June,1st & 2nd July 2011 East of England Showground, Peterborough The UK’s original hands-on event, showcasing mobility innovation for over 25 years Open 10am daily Free admission & parking Be inspired - new ideas for YOUR independent lifestyle Feel the experience - test drive vehicles, wheelchairs, powerchairs and scooters, plus a wealth of ideas for home, leisure and much more *Terms and conditions apply. For a free information pack and DVD call Meet the experts - advice and information to answer your questions Join in - sports, cycling, demonstrations and activities for all the family FREEPHONE: 0800 715 415 stannahstairlifts.co.uk Always true to our word 22 Arthritis Today To register for your FREE tickets visit www.mobilityroadshow.co.uk or call 0845 241 0390 www.arthritisresearchuk.org Focus on Edinburgh Research into practice Focus on Edinburgh Patients with bone and joint diseases are contributing to research which is leading to improved treatments, courtesy of a huge investment by Arthritis Research UK in Scotland’s capital city. Jane Tadman reports. If there’s a successful model for how research and clinical practice dovetail together it’s in Edinburgh. Patients with osteoporosis and Paget’s disease of bone, gout and osteoarthritis provide the samples of blood and DNA which are used in genetics and other studies and then directly benefit from the results of that research through better treatment and knowledge. It’s a virtuous circle. Arthritis Research UK professor of rheumatology at the University of Edinburgh Stuart Ralston, who arrived in the city from Aberdeen six years ago, combines cutting-edge research into Professor Stuart Ralston in his laboratory at the Western General Hospital the genetics of bone diseases with treating patients. On the one hand he’s consequent bone pain and often totaling in excess of £2m from Arthritis an internally renowned and much deformity in the skull, pelvis, spine and Research UK. published expert in the field of bone shin bones. It can be successfully treated disease research, and on the other he’s a 99 per cent of patients by drugs also used to treat osteoporosis, medic running general rheumatology called bisphosphonates. agree to taking part in clinics at the Western General Hospital. There is a strong genetic element to research One of the first things he did on arrival Paget’s and the condition often runs in in the Scottish capital was to set up an “We’re interested in the genetic basis of generations of families. One particular osteoporosis service for Lothian, which gene, called SQSTM1, has been bone disease, gout and osteoarthritis deals with 6,000 patients a year, and a and patients who come to the clinic are identified and is known to play a part in fracture liaison service, where everyone routinely asked if they’ll take part in its development: in fact, if anyone over the age of 55 who has suffered a carries this particular genetic mutation research and give a blood sample, and fracture gets the chance to have their there is a 90 per cent chance that they 99 per cent of them say yes.” bone density checked by a DEXA scan will develop Paget’s. However, carriers of As a result, the Edinburgh team has built the gene may not develop symptoms of – and then offered the appropriate up a biobank of more than 2,500 DNA treatment. the disease until they’re in their sixties samples, mostly from people with and seventies. “Setting up the service was important, osteoporosis but also with Paget’s. and it also fits into our research,” Professor Ralston and his colleagues explains Professor Ralston, who is based Paget’s disease of bone, which affects have now identified three more genes thousands of older people, leads to that predispose people to develop in the Institute of Genetics and Paget’s disease, which they believe accelerated bone growth and Molecular Medicine and has grants www.arthritisresearchuk.org Arthritis Today 23 24 & Mobility Health and mobility WIDE or SWOLLEN FEET? The largest range of extra wide shoes In EE, 4E, 6E and 8E width fittings, with a stylish look for women and men. £60OFF F P&REE P † OVER XL10 dual vacuum system Recommended by Podiatrists 10% OFF your order* QUOTE AT1411 FREE RETURN SERVICE for all UK orders for your F R E E catalogue call ✓ Incredibly lightweight (4.2kg/9.4lbs) easy to lift and manoeuvre ✓ Unique handle design reduces stress & strain on wrists and arms ✓ Powerful cleaning on all floor types ✓ Excellent at pet hair removal ✓ Ideal for allergy and asthma sufferers ✓ 4 Interest-Free instalments* Arthritis Research UK professor of rheumatology at the University of Edinburgh Stuart Ralston rheumatic disease. In collaboration with Professor Alan Wright at the nearby MRC Human Genetics Unit they identified a gene that predisposes to gout. They also recruited more than 600 patients with osteoarthritis to the Arthritis Research UK funded arcOGEN study of osteoarthritis. Professor Ralston said: “We expect that the results of arcOGEN And now in separate but linked research, will be available soon and it’s likely that the team are about to embark on a this will provide us with new insights five-year experimental medicine grant into the genes that predispose to from the charity that aims to find out if osteoarthritis. When that happens the they can detect and treat Paget’s next step will be to determine why disease – many years before symptoms these genes cause wear and tear of the appear. joints. We’re well placed to conduct that research.” could lead to the development of a screening test to identify those most at risk. The results of their study, published in the leading journal Nature Genetics, confirmed that genes play a crucial role in the development of Paget’s disease, which explains why so many people have a family history of the condition. 01933 311 077 or visit www.widerfitshoes.co.uk Online Shop www.hydrusbathaid.com Bath Aids for those with lessened mobility The Hydrus Bath Aid assists those with lessened mobility increasing confidence to enter and exit existing baths, thus aiding independent living. • BED PROTECTION • BRIEFS • PADS • ACCESSORIES CONTINENCE CARE ½ weight the of most vacuums upright Stopping Paget’s disease before symptoms appear Arelle provides high quality products for men and women For independence with elegance: www.hydrusbathaid.com UK Holidays INCLUDES For more information and your discreet mail order brochure call Arelle FREE on 0800 389 3597 or visit www.arelle.com They want to establish if the disease can be stopped in its tracks by treating patients with a single infusion of a bisphosphonate drug called zoledronic acid, which builds bone. 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Tel: 01803 313457 Oddicombe Hotel, Babbacombe Downes, Torquay, Devon, TQ1 3LF expected that the results of the study, expected later this year, will be applicable to the wider population. Holiday Breaks in the Lakes Highly commended self-catering spacious accommodation for 2-4 people specially designed with the wheelchair in mind. Accessibility 2* Grade. No steps. Wheel-over shower. Superb scenic location. Friendly owners in residence. For colour brochure: 01768 776380 www.irtonhousefarm.com www.disabled-holiday.net F P&REE P Name Address Postcode Email Tel Promotion cannot be used in conjunction with any other offer. **10 year warranty is for the XL10 upright, domestic use only. *Payment taken prior to despatch. ††Deluxe cylinder available with XL10 only. †Saving includes p&p worth £19.95. Calls may be monitored or recorded for training purposes. All prices include VAT at 20%. ©2011 Oreck Holdings L.L.C. All rights reserved. Offer ends 31.05.11. Do not send me details of Oreck special offers by email by post I do not wish to receive offers by post from companies recommended by Oreck, tick box AT114D “Breakthroughs in identifying genetic mutations that are responsible for causing Paget’s disease have now made it possible for genetic testing to be carried out via a simple blood test,” says Professor Ralston. “This is a rare example of a real attempt to use the results of genetic studies to introduce a possibility of disease prevention. If the people who are likely to develop Paget’s later in life can be identified in middle age, there is a chance to stop the disease in its tracks.” The Edinburgh researchers are also working on the genetic basis of other www.arthritisresearchuk.org The Edinburgh team is also extremely active in research into osteoporosis. Osteoporosis, or thin, porous bones, affects up to 30 per cent of women and 12 per cent of men at some point in life, and leads to around 200,000 fractures every year in the UK. For the past three years researchers led by Dr Jim Wilson have been looking to identify the genes that predispose people to develop various diseases in the remote Isles of Orkney, one of which is osteoporosis. Up to 2,000 people have been recruited in Orkney, which was specifically selected because the population is isolated and stable, and specific genes are easier to track down and identify. Research nurses have been running bone density scanning sessions in Kirkwall, and blood samples have been taken and screened for their DNA back in Edinburgh. Although the gene pool among Orkney families is isolated from the rest of the UK population, it’s Stuart Ralston began looking at the effects of cannabis on bones when he was still in Aberdeen, and has published widely in this area. Recently he has found that the impact of cannabis on bone health varies dramatically with age. His most recent study has shown that although cannabis can reduce bone strength in young people, it may protect against osteoporosis in later life. After an investigation involving mice, the team showed that a molecule found naturally in the body which can be activated by cannabis – called a type 1 cannabinoid receptor – is key to the development of osteoporosis. Testing the effect of cannabis on bones The team is now planning to study the effects on cannabis on bone health in human volunteers; 200 heavy cannabis users from general practices in Edinburgh will be recruited to explore the possible adverse or other effects of recreational cannabis on their bones. Cannabis users’ diet, exercise and alcohol intake will also be taken into account, since these factors also influence bone health. Of all the research achievements of the past five years, Stuart Ralston believes the genetic work on Paget’s that might lead to the condition being screened for and treated early has the greatest value. “To identify markers that identify people at risk for severe disease, and to be able to treat people with early disease to prevent complications happening, is very exciting. So much genetic research goes on that never has any practical application, or leads to anything, but this is different.” He adds: “We have fabulous support from Arthritis Research UK, and without the charity’s support all this research would not have been possible. We’ve made huge advances in treating osteoporosis; finding the molecules that regulate bone turnover and turning them into drugs. The message is the power of biology, and Arthritis Research UK shouldn’t forget – and it doesn’t – about funding basic biology as well as clinical research.” Arthritis Today 25 Questions and answers stem cells is occurring in many branches of medicine, including leukaemias, other cancers, neurological disease and musculoskeletal disorders. Indeed, Arthritis Research UK is funding such research in Oswestry. However, the case is not yet proven and it will take some time for new treatments such as this to be fully evaluated before they are approved and widely available. Editor’s note: the Arthritis Research UK Tissue Engineering Centre, due to open in Newcastle this summer, will carry out research into the use of stem cells for osteoarthritis. More details to follow in the next edition of Arthritis Today. I searched your site for tramadol and saw a quote about there being a big gap in the market since co-proxamol was withdrawn, and that (see previous solution. The Drug and Therapeutics Bulletin, a respected independent publication, had this to say about it: “The studies have provided few data to show that Targinact reduces, let alone eliminates, the need for laxatives in the long term, or whether it offers advantages for people with cancer. There are no published studies comparing Targinact with other oral strong opioids given with regular stool-softening and stimulant laxatives. Targinact is more expensive than oral morphine plus regular laxatives.” My GP is talking of replacing meloxicam with naproxen, but my limited research suggests that this may increase the risk of heart problems. I have psoriatic arthritis and have been taking meloxicam on and off since 1995. Any advice? Charles Gauton, Chelmsford, Essex My wife has rheumatoid arthritis and has been treated with rituximab. We would be grateful if there is any information on whether the use of this drug might affect the perming of her hair. She has had three perms since having the treatment – the first was two weeks after the second infusion and none of them have taken. We therefore wondered if there is a possible link? W J Lanigan, Bovey Tracey, Devon I am getting desperate. I suffer from both osteoarthritis and rheumatoid arthritis. My greatest problem is osteoarthritis in my cervical spine. For about five years I have been in constant pain, night and day. My rheumatologist can only suggest exercises, heat, a collar and painkillers (co-codamol) all to little effect. I heard of someone who has Botox injections three times a month which brings great relief. Could you advise me on this or any other treatment you think Well this is a new one for me. I would be successful? I am reaching the have heard of hair loss although end of my tether. this is not so much of a problem with Patricia Robbins Hale, Altrincham, rituximab. People taking Cheshire methotrexate are much more likely to I am sorry to hear about this. complain of hair thinning. Applying a Constant pain in the neck is one permanent set to your hair is a of the worst types of pain and I know chemical based treatment and as such from personal experience how is fairly harsh on the hair. The slow rate disabling it can be. I have given Botox of growth of hair, and the short time injections for neck conditions but only after the rituximab, suggests to me if significant muscle spasm is present that the rituximab had nothing to do – this is sometimes referred to as with the ‘perm’ as the drug would not spasmodic torticollis. Botox works by yet have been incorporated into the (temporarily) paralysing the muscles. hair. I must remember to ask my other It is a drug derived from the bacteria patients! which cause botulism where widespread muscle paralysis can occur. It sounds worse than it is and these injections have now been introduced widely in medicine. You have probably heard of their use in plastic surgery. The paralysis is not permanent but can last for a good while. Often the injections have to be repeated to maintain their benefit. In your case it would be advisable to seek an opinion from someone who administers these treatments. Indeed, other injections are a possibility – selective nerve blocks for example – which are usually given by anaesthetists, working as pain specialists. The Q&A with Dr Helliwell will also appear on our website at www.arthritisresearchuk.org Please write to Dr Helliwell c/o The •Editor, Arthritis Today, Arthritis Research UK, St Mary’s Gate, Chesterfield, Derbyshire S41 7TD or email [email protected] Meloxicam molecule with Dr Philip Helliwell SCIENCE PHOTO LIBRARY My question is why is it likely to be some time before proposed stem cell treatments become available to patients? I wondered if you have any knowledge about Regenexx in Colorado in the US. They appear to have mastered the art of treating people using stem cells for OA. What are your views on the work they do? Regenexx cultured stem cell procedure has currently been stopped by the Food and Drug Administration in the US. The FDA now deem the procedure to be a drug and not a medical practice. Regenexx are currently trying to reinstate the procedure and believe it will take between 4-12 months. Robert Sturgess, Stafford, Staffordshire columns in Arthritis Today) between paracetamol and tramadol there was a need for a stronger painkiller without the constipating side-effects of codeine (in co-codamol) and dihydrocodeine (in co-dydramol). I then searched your site for Targinact (which was featured in the Daily Mail recently) and it returned no result ... this I find quite unbelievable and suggest that you immediately rectify. I am a chronic pain sufferer amongst the millions abandoned by the medical profession. Graham Thorpe, Hemel Hempstead, Hertfordshire I think your GP wants to change meloxicam to naproxen because there is evidence that naproxen is better for your heart (in relative terms – all non-steroidal anti-inflammatory drugs carry a risk of heart disease but this risk varies between drugs. This I think there are a number of became apparent when rofecoxib, points here. The approval process Vioxx, was incriminated). I think I agree that the withdrawal of for new drugs and devices is a lengthy taking these drugs is a personal issue. co-proxamol has been a big blow Some drugs suit some people better one. Despite the ‘red tape’ these to many patients. Funnily enough procedures are largely designed to than others. When taking any drug small supplies of this drug are still protect you from harm and to ensure you also have to weigh up the available, if you know where to look that the cost of the procedure is advantages (the benefits the drug appropriate for the benefit it will give. for it and if your GP will prescribe it. gives you) with the disadvantages The latter role is currently undertaken And I completely agree that the (usually the side-effects). I think by the National Institute for Heath and constipating effect of morphine-like perhaps you need to discuss this drugs is a big drawback. However, I am further with your GP. Clinical Excellence (NICE). As to Regenexx I can tell you that work with not sure that Targinact is the perfect 26 Arthritis Today www.arthritisresearchuk.org Buy direct from the factory... why pay more! Half Price! * Riser Recliners Deal direct with the factory for the best deal! Order your colour brochure today Call free 0800 988 2898 ARTHI04/11 BRITISH BUILT HIGHEST QUALITY *Selected lines only. Offer ends 30/06/11. www.arthritisresearchuk.org Arthritis Today 27 February 2011 Career development fellowships Dr Linda Troeberg, Department of Matrix Biology, Kennedy Institute of Rheumatology, Imperial College, London; can we treat osteoarthritis by restoring the natural protection systems in cartilage? £425,761, 60 months. Dr Nicola Walsh, Faculty of Health & Life Sciences, University of the West of England, Bristol; development of a self-help exercise programme for people with chronic knee pain, £345,822, 60 months. (See page 9). Project grants Professor Charles Winlove, School of Physics, University of Exeter, Exeter; understanding the mechanical properties of cartilage–the effects of ageing and joint disease, £104,391, 24 months. Dr James Bateman, Department of Rheumatology, University Hospital North Staffordshire NHS Trust, Haywood Hospital, Stoke on Trent; development of a web-based tool for Professor Rizgar Mageed, Bone & teaching musculoskeletal medicine Joint Research Unit, Barts & The skills to medical students – the ‘virtual patient’, £156,316, 36 months. London, London; disease-causing B cells in lupus–a new target for drug development? £199,545, 36 months. PhD studentships Dr Dagmar Scheel-Toellner, Rheumatology Research Group, University of Birmingham, Birmingham; investigating ways to remove damaging T cells from the inflamed joint, £94,089, 36 months. Dr Elizabeth Jury, Centre for Rheumatology Research, University College London, London; how do fats such as cholesterol contribute to disease in patients with lupus? £100,760, 36 months. Dr Hazel Screen, School of Engineering & Materials Science, Queen Mary, University of London, London; using artificial fibres that mimic tendon movement to investigate ways to promote tendon repair, £100,760, 36 months. Dr Robert Froud, Centre for Health Sciences, Queen Mary University of London, London; can a better understanding of how patients perceive their back pain improve treatment outcomes? £122,773, 36 months. Allied health professional educational training bursaries Mrs Nicola Stanyer, Barker Unit, Haywood Hospital, Stoke-on-Trent; MSc in rheumatology nursing, £1,000, 12 months. Mrs Nicola Glover, Department of Physiotherapy, Whittington Hospital Dr Paul Bowness, Nuffield Department NHS Trust, London; principles and Clinical PhD practice of joint and soft tissue of Clinical Medicine, University of injection, £520, 12 months. Oxford; does an abnormal form of the studentships gene HLA-B27 lead to ankylosing Mrs Linda Kent, Royal Oldham Professor Jon Tobias, Academic spondylitis? £101,568, 36 months. Hospital, Oldham; rheumatology: Rheumatology, University of Bristol, disease process, treatment and care, Dr Catharien Hilkens, Musculoskeletal Bristol; why are people with very £823, 12 months. Research Group, Newcastle University, dense bones more likely to develop Newcastle-upon-Tyne; can bad T cells osteoarthritis? £17,325, 36 months. Miss Michelle Myburgh, Peterborough be ‘switched off’ in rheumatoid and Stamford NHS Trust, Peterborough, Dr Elaine Dennison, MRC Lifecourse arthritis? £94,089, 36 months. BAHT Level II: management of Epidemiology Unit, University of rheumatoid arthritis, £425, 12 months. Dr Gareth Hathway, School of Southampton, Southampton; what Biomedical Sciences, University of effect does childhood growth and Nottingham, Nottingham; the complex Allied health adult lifestyle have on the risk of developing osteoporosis in later life? web of pain signals from the joint professional and their processing by the brain: £66,749, 36 months. understanding the experience of educational travel pain in osteoarthritis, £94,089, Clinical studies award 36 months. Dr Athimalaipet Ramanan, Dr Lisa Roberts, School of Health Department of Paediatric Sciences, University of Southampton, Programme grant Rheumatology, University Hospitals Southampton; World Confederation Dr Andrew Clark, Kennedy Institute of Bristol NHS Foundation Trust, Bristol; for Physical Therapy, £500, 12 months. Rheumatology, Imperial College, can treatment with adalimumab (See page 31). London; glucocorticoids : time for a reduce eye damage in children with fresh think about the way they work? JIA associated uveitis? £745,972, £1,166,538, 60 months. 78 months. (See page 10). 28 Arthritis Today www.arthritisresearchuk.org AMRIPHOTO Research grants awarded Educational research fellowship The hints box Tips for painful feet Ruth Dallas writes about nodules under her foot (Q&A Arthritis Today 151). I too have rheumatoid arthritis and had a similar growth under the joint of my great toe. Initially thought to be a verucca, it has responded well to appointments with my podiatrist and regular use of a padded tubular bandage. I used to have nodules on my fingers and elbows, arising I’m told from methotrexate, so it seems likely that the one on the toe has the same cause. A foot file or pumice stone won’t touch it but the podiatrist’s scalpel does. Pressure on the toe from tight-fitting shoes should be avoided. Christopher Roberts, Market Harborough, Leicestershire This may help the lady with pains in her left foot. If she gets a half-cm-wide “bar” secured to the sole of her shoe, this will take the weight away from the painful area and transfer it to where the bar is secured (by a cobbler). I hope it will help her as it helped my husband. A Biczo, Royton, Oldham, Lancashire Walking helps people with osteoarthritis – and surgery! I am a retired consultant paediatric surgeon with osteoarthritis affecting mainly my spine, hips and hands. I had a menisectomy (surgery to remove torn cartilage in the knee) in 1959 which of course resulted in osteoarthritis of that knee, although the other knee remains fine. I have always walked, climbed hills, cycled and ridden a great deal, and as a result was able to carry on without knee joint replacement until 2006. My operation was very successful. My orthopaedic surgeon is quite sure that I managed 47 years postmenisectomy simply because I walked so much. It stands to reason, I think, that continued use of muscle groups is far better than static quads exercises. I am totally amazed therefore, to read in the winter 2010 edition of Arthritis Today of the attitude of some physios to exercise. And no – patients cannot be trusted to do boring exercises in the house. Send them out in the fresh air to walk, climb hills, climb stairs, etc – yes it will hurt to start with but wears off as you keep going and the joint will last years longer before needing surgery! I have now had my right hip replaced three times, left hip once, left knee once, have had metallic fusion in my spine and a subsequent spinal decompression I still walk two miles a day and can walk up to five miles at the age of 78. Margaret Mayell, Woodborough, Nottinghamshire I was interested to read the letter from Useful brands to help counter Mary Kirk regarding the effect of tomatoes Sjögren’s dryness The effects of tomatoes on her arthritis. I too had a flare-up of I read with interest the letter from Mary symptoms which I put down to tomatoes. I’ve had Sjögren’s syndrome, along with Kirk from Halesworth in Suffolk regarding Since keeping off them I have been much other autoimmune problems, for decades. her concern about the consumption of One thing I have found is that using better. tomatoes. I have had rheumatoid and Weleda natural oral care toothpaste has osteoarthritis for the past 15 years, and I Mrs A Wright, Tavistock, Devon sorted out the mouth ulcers. (I use find I get a reaction from tomatoes and Editor’s note: Some people believe certain calendula because I have problems with also strawberries. Bright-coloured fruit peppermint). As skin and scalp difficulties foods are bad for arthritis. These include and vegetables bring on an attack of can add to one’s misery, I would suggest acidic fruit (e.g. oranges, lemons and arthritis in my knees, hands and jaw within using Dead Sea natural mineral shampoo, grapefruit) and vegetables from the 30 minutes to an hour. I have not eaten usually available at Boots. Don’t be put off so-called nightshade family including meat or poultry for more than 20 years potatoes, tomatoes, aubergines, chillies and by the price – it lasts for ages. Avoiding and stopped eating fish 18 months ago. laureth sulphate (a chemical used in many peppers. There’s no scientific evidence that During that 18 month period flare-ups cosmetics) in any product I know is also leaving out any of these foods helps arthritis, seem to occur more often and with more advisable. and doing so may reduce the beneficial severity. I find that a healthy diet of Cynthia Gittos, Colchester, Essex vegetables on the bland side, exercise and antioxidants in the diet. acupuncture seem to be the only form of “medication” other than chemicals that help me. Views expressed in the hints box are those of readers and are not necessarily the views of Arthritis Research UK. The hints box is also published online on our website at George Forsyth, Saltburn by the Sea, www.arthritisresearchuk.org Teeside • www.arthritisresearchuk.org Arthritis Today 29 Meet the experts Dr Daniel Tonge and Dr Lisa Roberts explain their work in an ongoing series of questions and answers with Arthritis Research UK-funded researchers. Dr Daniel Tonge What does your work involve? I am a molecular biologist working at the University of Nottingham investigating changes in the quadriceps (thigh) muscle that may contribute towards, or accelerate the development of, osteoarthritis of the knee. My work involves extracting DNA from samples of muscle and performing complex analyses on it to identify changes in the expression patterns of various genes. The overall aim is to assess whether any of these expression changes may be responsible for changes in the thigh muscle associated with osteoarthritis of the knee. How long has Arthritis Research UK been funding you? It has been three years since my funding started. As well as providing funds for the reagents and chemicals with which I perform my experiments, Arthritis Research UK also provide funding to disseminate and discuss findings with other scientists at specific osteoarthritis conferences, most recently in Quebec City, Canada. The opportunity to meet regularly with other scientists and share our findings is key to advancing our knowledge of osteoarthritis as a whole. What’s the most important thing you have found out in the past 12 months? And why? The most exciting finding over the past 12 months has been that some wellcharacterised models of knee 30 Arthritis Today osteoarthritis show changes in their thigh muscle during both the initiation (start) and progression of the disease. This is potentially very exciting in terms of our understanding of the disease. Further assessment of these changes may help to explain why many people with knee osteoarthritis have weakness in their thigh muscles, and the relevance of this. What do you hope or expect to achieve as a result of your Arthritis Research UK funding? During the course of my Arthritis Research UK funding, I am hoping to assess changes in the thigh muscles of some of the established knee osteoarthritis disease models. This will allow an informed choice to be made on which model best mirrors the muscle changes we see in humans, and help to ensure that any findings are relevant to human health and disease. Following on from this, I am hoping to understand some of the signalling events that occur in the body which may be responsible for the changes in the thigh muscle observed in people with knee osteoarthritis. This may highlight particular signalling molecules that could be targeted by new medicines. What do you do in a typical day? A typical day for me is split between the laboratory and office. In the laboratory my time is spent preparing DNA from samples of muscle, setting up new experiments to measure various genes or developing and validating new assays (tests). In the office I spend time analysing data using a series of computer packages, maintaining detailed laboratory notes and keeping abreast of the most up-to-date research. Some of my time is spent writing scientific publications which appear in various journals and allow scientists to exchange their findings. characterise very subtle changes in muscle occurring around the time of osteoarthritis development. Dr Lisa Roberts Why did you choose to do this work? My two main roles, as a senior lecturer at the University of Southampton and consultant physiotherapist at Southampton General Hospital, enable me to undertake a mix of research and clinical work. My research programme (made up of three studies), involves measuring the communication and clinical decisions that are made between physiotherapists and people with back pain. In the first study, I visited patients at home (to understand their expectations), observed their first consultations, interviewed the physiotherapists (about what they think they said), and patients (about what they think they heard), which was fascinating. In the current study, I’m observing the initial consultation and all physiotherapy treatments for patients with back pain, recording verbal communication, body language, and how treatment decisions are made. The final study, planned for 2012, involves running workshops for physiotherapists to improve communication and decision-making and measure the effect on patient satisfaction and health outcomes. I graduated with a first-class degree in Biomedical Sciences in 2003 before undertaking a doctorate in molecular biology at The University of Nottingham under the direction of Dr Tim Parr, funded by Arthritis Research UK. I have always had an interest in both human pathologies and molecular biology so the opportunity to study the molecular changes associated with osteoarthritis was perfect! Do you ever think about how your work can help people with arthritis? Yes I do, it is my main motivation. However as a scientist, I don’t get many opportunities to speak directly with patients. My work is focused on better understanding the disease process, and in the identification of potential targets with which drugs can be directed. What would you do if you weren’t a scientist/ researcher? I’d like to own a country pub in a picturesque village with real ales, locally sourced foods and a roaring log-fire. About Dan I enjoy good food, good beer, and walks in the country with my wife Laura, who is also a scientist! • Dr Daniel Tonge, based at Nottingham University’s School of Veterinary Medicine and Science, has a PhD studentship from Arthritis Research UK What is your greatest research achievement? My greatest achievement to date has been to read some of the DNA sequence (the order of DNA bases A, C, T and G) which codes for a well-known gene family responsible for the contraction of muscle. The DNA sequence of this gene family was previously unknown in the Dunkin Hartley guinea pig – a strain of guinea pig that naturally develops osteoarthritis. This particular finding has paved the way for the development of sensitive tests, allowing us to assess and What does your work involve? How long has Arthritis Research UK been funding you? My Arthritis Research UK fellowship started in 2007 and will be complete in 2013. What’s the most important thing you have found out in the past 12 months? And why? Previous research has suggested that patient-therapist relationships are more important to success than treatment techniques. One of the most interesting aspects of this work for me has been asking clinicians what they think they said about back pain diagnoses and asking patients what message they took home. It is interesting when these views concur and fascinating to see how and why differences arise. The findings are relevant to health professionals who seek to explain clinical findings to their patients. What do you hope or expect to achieve as a result of your Arthritis Research UK funding? The aim of my research programme is to listen to people who use the service, find out what they value most in www.arthritisresearchuk.org www.arthritisresearchuk.org health-care consultations and improve Do you ever think about how communication, to deliver better patient your work can help people with experience and outcomes. What do you do in a typical day? Some days are spent gathering data (observing treatment sessions) and analysing the interactions and decisions that occurred. Twice a week I’m at the hospital, either in clinic assessing and treating people with spinal and upper limb pain, teaching, or helping colleagues design and deliver audits. The role is really varied and my clinical work helps keep me focussed on how my research can make a difference and be applied in practice. What is your greatest research achievement? There have been two events that really stand out for me. The first was being awarded my fellowship from Arthritis Research UK and having this opportunity to focus on improving patients’ experiences, which I feel so passionate about. The second event happened in 2007 in Vancouver, at the World Confederation for Physical Therapy. Every four years, physiotherapists from around the world get together at a large conference and I was fortunate to receive a travel award from Arthritis Research UK to present work I had been doing with colleagues from the Wessex Neurological Centre, reviewing ‘red flags’, which are signs and symptoms that suggest a patient with back pain may have a more serious underlying condition. This work received the only UK ‘Outstanding presentation’ award, (1 of 17 worldwide), which was both a great surprise and honour. I am really grateful to Arthritis Research UK for making both of these events possible. arthritis? Yes I do! Every week, through my clinical work and research, I meet people with a range of different symptoms, often caused by arthritis. To hear how they manage these and the challenges they face keeps me motivated. I must confess that I also have a vested interest in this field, as I was diagnosed with seronegative arthritis when I was 19, which serves as a daily reminder of the importance of research in this area. What would you do if you weren’t a clinician/researcher? I’d probably develop my passion for dancing and finish my training to teach dance. I met my husband ballroom and Latin American dancing, and when we finished our amateur exams (which took 12 years), we started our professional exams together, which are a lot more challenging! About Lisa I am a mum to a very busy eight-yearold and we love spending time as a family, whether it’s working on brownie projects, activities at church, music, local history, arts and crafts or going on picnics and walks in the beautiful New Forest with friends and family. Apart from dancing, I’m involved in scouting, and work with the charity BackCare, as a trustee and, for the last 21 years, helping to run evening hydrotherapy sessions for the Southampton branch. Life is certainly full and fun: I only wish there were more hours in the day! • Dr Lisa Roberts is an Arthritis Research UK senior lecturer in physiotherapy/ consultant physiotherapist. Why did you choose to do this work? The inspiration for this work came from clinical practice. I had often discussed with colleagues how two patients presenting with similar conditions could have such different outcomes, sparking an interest in ‘non-specific treatment effects’. This work builds upon my PhD, which considered perceptions of control in people with back pain, and subsequent work undertaken by one of my MSc students, Sally Bucksey, who was also interested in communication. Arthritis Today 31 Fundraising news Fundraising news How your donation will make a real difference Give through your pay Has arthritis affected your life? our website at • Visit www.arthritisresearchuk.org The scientists we fund are working across the spectrum of research to provide more effective treatments, faster diagnoses and hopefully a cure. Thanks to their work we are helping thousands of people to live a normal and active life. We need regular donations to continue our work, as we receive NO government funding. Last year almost £106 million was received by UK charities from over 700,000 employees donating from their pre-tax pay. In addition over £13 million was received from employer-matched funding to UK charities. Regular gifts, such as those made through your pay, allow Arthritis Research UK to plan and deliver its essential research to develop effective new treatments and faster diagnosis for arthritis sufferers. Payroll giving is a very easy and tax efficient way to support our vital work. It allows you to give straight from your pay before tax is•deducted. This means • Today that if you pledge to give £10Arthritis a month, it will actually only cost you £8 on basic tax rate as the tax man makes up the difference (or £6 on higher tax rate). What a fantastic way to make your donation work harder! A regular gift from you through payroll giving will make a huge difference to what we do. • For every pound you invest, 78p is spent on research. or call us on 0300 790 0400 If you support Arthritis Research UK we’ll send you our quarterly magazine, Arthritis Today, filled with advice and tips as well as news on how your generosity is helping. Winter 2011 | No 151 • We spend 21p to fundraise almost four times that amount for research in the years ahead. The magazine reporting research, treatment and education • The governance costs of running the charity are equivalent to just under 1p in the pound. Elaine’s primary focus Professor Elaine Hay on how to improve GP care of arthritis 75 years of Arthritis Research How we’ve made a difference Taking the pain out of sport Our new website Arthritis Research UK Copeman House, St Mary’s Court, St Mary’s Gate, Chesterfield, Derbyshire S41 7TD Registered Charity England and Wales no. 207711, Scotland no. SC041156 www.arthritisresearchuk.org 1344 ArthritisTodayWINTER2010NEW.indd 1 07/12/2010 15:30 It costs you It costs you Your pledge on basic tax on higher tax rate (20%) rate (40%) £5 £10 £15 £20 £4 £8 £12 £16 £3 £6 £9 £12 Payroll giving Help us beat arthritis If you would like to help Arthritis Research UK through payroll giving, please contact Helen Twelves on 01246 541106, email payrollgiving@ arthritisresearchuk.org or simply complete and return the enclosed payroll giving leaflet to the freepost address provided. Find a bargain on eBay – and support our charity Anyone who thinks eBay is a simply a place to unload their old junk or pick up the odd bargain – think again. and packaging was done in a claustrophobic cloakroom.” online sources of income are proving themselves to be a fantastic new money spinner for the charity. Says Wendy: “All our charity shops were now being drawn in to the project. Visits to each shop would provide an array of interesting items to list on eBay and once sold each individual shop would have the appropriate sales attributed back to them, making everyone keen to watch out for those unusual and quirky items.” Our following grew as did our feedback Since Arthritis Research UK’s eBay site was ratings and in 2008, with the backing of set up in June 2006 it has raised the Ken Dunning, Arthritis Research UK head extraordinary sum of £100,000. of retail, Wendy took on offices at Bowthorpe, Norwich, above the charity And with our Amazon account – shop, so that the eBay project could launched in June last year – already bringing in more than £11,000, these two expand. Our eBay and Amazon accounts are run by internet sales manager Wendy Bellison, who takes up the success story. “The eBay project was started in June 2006 at the North Walsham shop by district shop manager Margaret Barnes and myself on a voluntary basis,” explains Wendy, who has been involved in the antiques world for many years and worked for a number of auction houses. “It soon became obvious that items that didn’t have a particular value in the shops were greatly sought-after on eBay: small wooden carvings fetching £20/£30 each; a rolled up amateur oil painting sold for £350; suddenly we had a worldwide audience and they liked what we had to sell. “Within 12 months I was employed full time by Arthritis Research UK. It was rather a tentative start with just me, a basic computer and my trusty Kodak camera. Photography of the items had to be undertaken outside in all weathers 32 Arthritis Today Recent sales include a dilapidated teddy that was many decades past his best that sold for £550 (this item was also Gift Aided which added another 28 per cent); a 1976 Fisher Price toy house that sold for £62; a Victorian locket that sold to a woman in Australia fetched £285; a pair of binoculars were snapped up in Italy for £102, with £37 being paid for six microscope slides of squashed bugs! Wendy now has one full-time assistant, James Davey, who joined her in October 2010 and until recently Sarah Mayes, who worked one day a week on the eBay project. She also has a wealth of volunteers who assist in various aspects of the day-to-day running of both accounts, from photography to packaging to tea making. Her hard work in building a solid and reputable trading base is now paying off. Arthritis Research UK now averages 120 eBay listings per week and sales are growing weekly. All our items start on eBay for 99p and have no reserve. Adds Wendy: “We enjoy interaction with our supporters and we listen to what they have to say. eBay is a fun way to support Arthritis Research UK and we welcome everyone who wants to either donate quirky items for us to sell or who like to have a dabble in the bidding themselves.” 2009 saw the start of the charity’s Amazon account which coincided with the opening of Arthritis Research UK’s The eBay link is: http://myworld.ebay. first bookshop in York. Between Wendy in co.uk/mebarc Norfolk and the bookshop in York we The Amazon link is: http://www. now keep a book inventory of around amazon.co.uk/shops/arccharity 1,000 books. • • www.arthritisresearchuk.org Your views: results from our survey In our summer 2010 edition of Arthritis Today we enclosed a survey asking for your views and stories on a variety of areas, ranging from your personal connection to arthritis, your support of other charities, to what you’re interested in hearing about and what you think is important for us to prioritise our investment in. Good luck to London Marathon runners on April 17 Arthritis Research UK would like to thank and wish our 2011 London Marathon runners the very best of luck. We will be there to support you every step of the way and look forward to meeting you at our post reception, where you’ll enjoy a hot meal and a well deserved massage. people stated they experienced pain We were delighted that 792 people at levels 1 or 2 on the scale. took the time to complete our survey. We received some heartening stories •Sadly, just over a quarter of and gained some interesting insights respondents stated that they on the issues that concern you. A few of experience pain levels of 4 or 5 on the findings are summarised here: the scale. This makes it unsurprising that over half of people want to hear Most readers have some interest in Thank you for your hard work and from us about effective pain arthritis so we asked about the commitment – good luck! management and 46 per cent feel it’s nature of your personal connection an area we should prioritise to the condition. •When it comes to how we prioritise investment in. •All of the respondents have a close our activity, half of all respondents personal connection with arthritis. think we should be researching ways An overwhelming 697 people, 88 per to prevent arthritis. Additionally, a cent of respondents, themselves massive 63 per cent of people feel have some form of arthritis. we should prioritise finding a cure for Additionally 15 per cent of people arthritis. live with or care for someone with Supporting our work arthritis. Over half of our work is only possible As there are over 200 types of because of the kindness of people who arthritis we were keen to know more include gifts in their wills. Raising about the types you experience. awareness about this form of support is •A huge majority of respondents with crucial for us to be able to increase the arthritis suffer from one of two types: research we can undertake and bring osteoarthritis, which affects 56 per forward the day when we can achieve cent of people and rheumatoid our vision of a world where arthritis arthritis, affecting 27 per cent. doesn’t wreck lives. We asked about However, over 30 different types of your attitude to supporting us in this arthritis were mentioned. way. We know that pain is one of the most •26 per cent of respondents indicated We wanted to know what you want devastating aspects of living with that they would consider including a arthritis. We wanted to find out more to hear from us about and what you gift in their will to Arthritis Research think is important for us to be about the levels of pain people live UK or have already done so, which is investing in. with. incredibly heartening. •Given the high proportion of people We asked people with arthritis to rate •82 per cent of people stated that with osteoarthritis it is unsurprising the pain they experience on a scale they have made a will. that 55 per cent of people would like from 1 to 5, where 1 equates to minimal to hear from us about this condition. If you’d like information on how to or occasional pain and 5 equates to include a gift in your will or would like a But additionally, over half of constant agony. respondents stated that they wish to copy of our free will-making guide •The findings showed that just over a please contact Jas Chahal, legacy hear from us about finding better third of people who live with some advisor on 020 7612 9531 or visit ways to manage pain, as well as degree of pain put themselves at www.arthritisresearchuk.org/ finding a cure for arthritis. point 3 on the scale. A quarter of legacies www.arthritisresearchuk.org Arthritis Today 33 “Just three years old when his body seized up” No one knew what was wrong with Christopher when his temperature soared to 105 degrees and his little hands closed shut. “None of the anti-TNF drugs worked for long.” After spending six long weeks in hospital, juvenile idiopathic arthritis (JIA) was eventually diagnosed. This type of arthritis affects thousands of children in the UK, causing inflammation, pain and swelling to the joints. After his diagnosis, Christopher was prescribed steroids which helped to control some of his symptoms, but the effect of the medication didn’t last for long and soon all his joints were affected and extremely painful. He has the condition severely and is frequently in a lot of pain. He has been on all the anti-TNF drugs but their benefits were short lived. ® Despite his pain, his mum tells us “Christopher makes it easy for us to cope, he never complains even though he has been through so much. Everyone loves him at his school and in hospital.” Although anti-TNF drugs transform the lives of more than 70 per cent of people who take them, there is still so much more work to do. Medical research is the only way we will improve treatments for arthritis and hopefully discover a cure. Your donation will help children like Christopher go on to lead happy and active lives. Please donate whatever you can by completing the form below. I want to support Christopher and other arthritis sufferers Are you a UK taxpayer? No Please treat all donations as Gift Aid until further notice. My annual income tax and/or capital gains tax is more than the tax Arthritis Research UK will reclaim on my donations. Initials Surname Address Yes If so, your donation could be worth almost 30% more, helping us to fund vital work at no extra cost to you. All you need to do is tick the box. Please fill in this form and post it to: FREEPOST SF671, Arthritis Today, Arthritis Research UK, PO Box 177, Chesterfield S41 7BR. Title (Mr/Mrs/Ms/Other) As the party started swinging, it was clear who had taken their Jointace ... Postcode Postcode We would like to contact you by email and telephone from time to time. If you would like to hear from us in this way please fill in your details below. Email: Home tel no: can only accept I would like to donate: (We donations in UK Sterling) £15 £25 £30 Other £ I enclose my cheque/postal order/CAF voucher made payable to Arthritis Research UK OR Please debit my Maestro/Mastercard/Visa/CAF Card/Amex (Please delete as appropriate) Card Number: (Maestro only) Valid from: M M / Y Expiry date: Y Issue No: M M / Y Y (Maestro only) Date: D D / M M / Y Signature: ATTOD Y Y Y Data Protection Act: Arthritis Research UK and our trading companies would like to hold your details in order to contact you about our fundraising and research. If you would prefer us not to use your details in this way please tick the box and return this letter to Arthritis Research UK. We do not sell or swap your details with any third parties, but in order to carry out our work we may need to pass your details to service companies authorised to act on our behalf. Please visit our website at: www.arthritisresearchuk.org where you’ll find: • Patients’ own experiences • Detailed reports on research projects • Information to download • Other ways to get involved Arthritis Research UK is a registered charity in England and Wales no. 207711, Scotland no. SC041156. Would you like to receive your own copy of Arthritis Today? To receive your free copy of our magazine simply call 0870 850 5000 or write to: Arthritis Research UK, Copeman House, St Mary’s Gate, Chesterfield, Derbyshire, S41 7TD, UK ARUK4767_ARUK_AT_ArthritisToday.indd 1 15/09/2010 12:12 Flexibility Joint Cartilage health Mobility MAX support Gel Fizz “Healthy joints are an essential part of an active life. The Jointace® range has been specially formulated to deliver targeted, premium nutritional care for those who really care about their joints. 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