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Arthritis Today Summer 2011 | No 153 The magazine reporting research, treatment and education Getting a grip How our research is helping people with arthritis in their hands Read all about it Our new patient booklets Back to basics Rehab after spinal surgery – can it help? GREAT VALUE OFFER FOR ARTHRITIS TODAY READERS Such Great Value The magazine reporting research, treatment and education. Published by Arthritis Research UK. Feature highlights 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 Included excursion - City tour of Rome 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 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 A lupus special P 12 New patient information booklets P17 Back to basics The search Rehabilitation for a cure after spinal surgery – can it help? P19 Spinal surgery can help some people with severe back pain, but can a rehabilitation programme following surgery help recovery? You’d think the answer would be obvious, but the As well as all our usual features – the popular Q&A with Dr Helliwell, the hints results of our clinical trial have thrown up some interesting results. See page 19. box, and meet the expert sections – we’re looking at a number of issues we Finally, we shine the spotlight on our research at Newcastle University; not think will strike a chord with many for the first time, but we make no readers. apologies as it’s one of the leading UK For example, the problem of osteocentres for research into inflammatory arthritis affecting the hand. With forms of arthritis in adults and children. surgery not always possible or Catch up with the team’s latest news on desirable, what are the options for treating this painful condition? We look page 23. A very warm welcome to the summer edition of Arthritis Today; particularly to those of you who might be new to Arthritis Research UK and our work. Dates & Prices HOLIDAY REF: FIRS GATWICK British Airways – Depart 1405 hrs / Return arr. 1815 hrs 2011 23 Sep £719 30 Sep £719 27 Mar £699 29 May £779 11 Sep £799 3 Apr £749 5 Jun £789 18 Sep £749 17 Apr £749 12 Jun £789 25 Sep £729 24 Apr £769 19 Jun £789 2 Oct £729 1 May £769 26 Jun £789 9 Oct £619 8 May £769 3 Jul £789 16 Oct £619 15 May £779 21 Aug £799 23 Oct £599 22 May £779 4 Sep £799 30 Oct £599 2012 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 arthritis of the hand can be treated P10 Read all about it Welcome £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. Getting a grip George’s How osteoliving legacy 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 at the research being done doing in this Enjoy your read. area, and at one woman’s experience of Jane Tadman how special gadgets and equipment to Editor, Arthritis Today protect the hand joints can really help. Find out more on page 10. Many readers will be unaware that lupus can lead to kidney failure. On page 12, George Plumptre from the National Gardens Scheme talks about his donation of a kidney to his brother who has lupus nephritis, and we also highlight a major new genome screening programme that will help track down the causes of this serious autoimmune disease. We’re very proud of our recentlylaunched brand-new patient information booklets, which have been completely re-written and given a more contemporary look and feel. Our information content manager Michelle Harrison explains the reasons for the changes to the booklets on page 17. www.arthritisresearchuk.org Focus on research in Newcastle P23 The hints box Pilates helps osteoarthritic knees P 28 Contents Our news and chief executive’s column 4 News about the latest research 7 Hand osteoarthritis – new research 10 Lupus – a real-life story 12 Our new patient booklets 17 Rehabilitation after back surgery 19 Questions and answers 21 Focus on our research in Newcastle 23 New research awarded 27 The hints box 28 Meet the expert – with Drs Philip Helliwell and Arthur Pratt 30 Fundraising 32 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: Christine Walker, who has osteoarthritis of the hand, using specially adapted secateurs. See page 10. Arthritis Today 03 News Fighting talk Policy & communications update Kirsty Walker, director of policy and communications from Dr Liam O’Toole, chief executive, Arthritis Research UK Making giving easier Along with a team of dedicated staff and volunteers I was privileged to attend this year’s London Marathon, and to cheer on our 60-plus runners, who put body and soul on the line on our behalf. All our runners have first-hand experience of what a debilitating condition arthritis is, and considering the emotional and physical challenge they faced on the day, all should be extremely proud of themselves. I must make special mention of our own Michelle Harrison, information content manager. Michelle has been in charge of overhauling all our patient booklets for their successful spring launch, but nevertheless found the time over the winter months to train and get into shape for the marathon – her first-ever competitive event. I hope you have had the chance to see our fantastic new range of information booklets (see page 17). Michelle and her team have done a terrific job in bringing our old publications up to date. We know that knowledge can be a powerful tool to help patients to feel empowered and more in control. Our booklets are part of our mission to be the ‘trusted portal’ for patients and health professionals alike: to provide the best and most up-to-date information on all types of arthritis. people greater choice and control over their healthcare and support improves their health and well-being. If you are given a personal health budget, you will develop a care plan with your health professional. In due course, Arthritis Research UK might also be able to help with this. Your plan would set out your health needs, the outcomes you want to achieve, the amount of money in the budget and how it can be spent. The idea is to give you more choice and control over the sort of support you receive. As part of its Big Society initiative, the Government has been looking at what it can do to stimulate giving – of time and money – to good causes. There are some good, innovative In the pilot, people are using their proposals. For example, the ‘Round money in novel ways. One person who Pound’ initiative enables shoppers had trouble sleeping, for example, was paying by credit card to round up their allowed to spend some of her budget bill to the nearest pound, giving the on buying a special mattress. pennies of their electronic change to charity. There’s also a scheme that the LINK network is planning, to enable you to make charitable donations at cash machines. The Government is exploring the option of offering Gift Aid on donations of this kind. Arthritis Research UK welcomes Round up your bill at the checkout – for charity these ideas, but A personal health budget will not cover there is one disappointment. We and every NHS service you may need; for others proposed to the government example, it doesn’t include emergency that tax changes should be made to allow donors to give assets to charities care, GP visits or medications. but retain the benefit from them during The experiment is being conducted in their lifetime. These so-called ‘living 20 sites around the country. If you are legacies’ have been popular in the US, someone who is taking part in this but the UK government has so far exercise, we’d like to hear from you. declined to move forward on them. We Please contact us at campaigns@ will continue to press the case. arthritisresearchuk.org Personal health budgets Results are due in October 2012 and will inform future government decisions Would you like a personal health about rolling out the scheme to people budget, for you to spend on treatment with long-term conditions nationwide. and care for your arthritis? More information can be found at This novel idea is currently being tested www.dh.gov.uk/ personalhealthbudgets by the Department of Health. Its pilot study aims to investigate if giving 04 Arthritis Today www.arthritisresearchuk.org Research news Hope of screening test for bone disease Scientists have discovered that at least seven genes may account for the development of Paget’s disease, a painful bone condition that affects up to one million people in the UK. The international team of scientists, Professor Stuart led by the Ralston University of Edinburgh, believe the genes are involved in regulating the rate at which bone is renewed and repaired, providing an explanation of why the disease occurs. They are also hopeful that the discovery will bring the likelihood of genetic screening tests to identify those at risk of developing Paget’s a step closer. Professor Stuart Ralston, Arthritis Research UK professor of rheumatology, who led the study at the University of Edinburgh with Dr Omar Albagha, said: “We have now identified seven genes that predispose people to Paget’s. The effect of these is large, and together they considerably increase the risk of developing the condition. “Our work shows that these genes together very strongly predict the development of Paget’s disease. Their effects are so powerful that they could be of real value in screening for risk of the disease. This is important since we know that if treatment is left too late, then irreversible damage to the bones can occur. If we were able to intervene at an early stage with preventative therapy, guided by genetic profiling, this would be a major advance.” Paget’s disease disrupts the body’s normal process of breaking down old bone and replacing it. The condition leads to enlarged and malformed bones and patients can suffer from bone pain, brittle bones susceptible to fractures, and Stem cell therapy for meniscal cartilage tears Scientists are embarking on early clinical testing of a pioneering stem cell bandage which is designed to treat meniscal cartilage tears. Meniscal cartilage plays an important role in the knee joint, where it acts like a shock absorber. A torn meniscus is typically treated by removing the damaged cartilage, but this often results in the early onset of osteoarthritis. Scientists at Azellon Ltd, a University of Bristol spin-out company, hope that their new stem cell bandage product will provide an alternative and less invasive treatment. The bandage is seeded with the patient’s own stem cells and is implanted into the patient’s injured knee using a specially designed instrument. It is hoped that, once in place, the stem cells will help to repair the torn cartilage and reduce the risk of early-onset osteoarthritis. Arthritis Research UK professor of rheumatology and tissue engineering Anthony Hollander, chief scientific officer at Azellon Ltd and head of the University of Bristol’s School of Cellular and Molecular Medicine, said that the approval for a phase-I trial represents “an important milestone in the development of stem cell therapies in the UK”. www.arthritisresearchuk.org advanced arthritis. It affects more people in the UK than anywhere else in the world. Researchers – funded by Arthritis Research UK and the Paget’s Association – studied 2,215 patients with Paget’s disease to find the genes that could cause the condition. The team – which included scientists from the UK, Australia, Spain, Italy, Holland and Belgium – found four genes that were faulty more frequently in patients with the bone disease than in healthy people. Last year they used a similar approach to identify three genes that caused the condition. The results – published in the journal Nature Genetics – confirm that genes play a crucial role in the development of Paget’s disease, which explains why many patients have a family history of the condition. Professor Ralston is now setting up a new clinical trial aiming to identify people at risk of Paget’s and to offer them preventative treatment. Shaping the future of musculoskeletal services Professor Anthony Hollander He added: “These cells hold much scientific and medical promise but we can only know if they work or not by testing them out in clinical trials. The effective repair of meniscal tears would represent a significant advance in treatment, particularly for younger patients and athletes, by reducing the likelihood of early-onset osteoarthritis, and would offer an exciting new treatment option for surgeons.” A spokesman for Arthritis Research UK said that Professor Hollander’s work, and its similar research at Keele University investigating the effectiveness of stem cells taken from a patient’s bone marrow to repair osteoarthritis of the knees, were both hugely exciting projects which offered a real hope of better treatment. In June Arthritis Research UK hosted its first ever multi-disciplinary musculoskeletal meeting. Over 70 healthcare professionals gathered in London to hear renowned speakers offer their views on both the current state, and the future of musculoskeletal services. Though it wasn’t all listening – attendees had the opportunity to get involved and to debate the issues with their peers via lively discussions and workshops. Delegates came from across the UK and represented all the professionals involved in musculoskeletal care, including rheumatologists, GPs, physiotherapists, service managers and sports and exercise medicine specialists. Putting patient experience at the heart of services was the overarching consensus from the day. This meeting was the start of an on-going dialogue amongst these key professionals; the group will continue to meet and to share ideas to help shape the future of musculoskeletal services. Arthritis Today 05 As the party started swinging, it was clear who was staying flexible... Research news Group therapy helps rheumatoid arthritis patients manage fatigue Group behavioural therapy could help rheumatoid arthritis patients to learn how to manage their fatigue, a new trial funded by Arthritis Research UK suggests. A team of scientists from the University of the West of England and University Hospitals Bristol investigated the effect of group cognitive behavioural therapy on fatigue self-management in patients suffering from the debilitating condition. The talking therapy aims to help people manage their pain by identifying and evaluating thoughts and behaviour using goal-orientated discussions and encouraging techniques for self-help once group sessions have ended. Led by Drs Sarah Hewlett and Nick Ambler, the team found that six weekly two-hour group sessions on fatigue self-management were enough to help patients with rheumatoid arthritis reduce the exhaustion that can accompany the condition. Publishing their findings in the Annals of the Rheumatic Diseases, they explained that 65 patients were given cognitive behavioural Dr Sarah Hewlett therapy while a control group of 62 “Group cognitive behavioural therapy for participants received fatigue information alone. self-management in rheumatoid arthritis After 18 weeks, both testing methods used improves fatigue impact, coping and to assess fatigue showed improved levels in perceived severity and well-being,” the team concluded. the group that had received the sessions. Beyond fatigue, participants on the cognitive behaviour therapy course were also found to be coping better with their arthritis in general. The results also indicate that these patients were less likely to be suffering from depression, helplessness, self-efficacy or sleep problems. “Cognitive behavioural therapy is more commonly delivered to individuals, exploring their unique links between thoughts, feelings and behaviours, but this study showed that group cognitive behavioural therapy can pursue individual goal-setting in subgroups and still improve fatigue and well-being.” New national register for children with arthritis inflammatory arthritis in adults and children. The first drugs in the class, known as anti-TNF therapy, were developed by Arthritis Research UK for the treatment of Arthritis Research UK is spending more than rheumatoid arthritis about 10 years ago, but have also been found to have been just £700,000 on establishing and maintaining effective in treating even very young the juvenile idiopathic arthritis (JIA) biologics register over the next five years at children. its epidemiology unit at the University of Manchester. A new national register has been set up to monitor the long-term safety and effectiveness of biologic drugs used in children with arthritis. Flexibility The charity is also establishing a new biobank of blood and/or saliva samples from children that will be used to test whether there are variations in genes which can predict who will respond to the drugs, and who may get serious side-effects. Joint Cartilage health Mobility MAX support “Healthy joints are an essential part of an active life. The Jointace® range has been specially formulated to deliver premium nutritional care for those who really care about maintaining their joints. Every advanced Jointace® food supplement has been produced to high pharmaceutical quality standards to ensure you receive exceptional joint support.” From Boots, Superdrug, supermarkets, Lloydspharmacy, chemists, Holland & Barrett, GNC, health stores & www.jointace.com Gel Fizz Patch Currently 700 children with arthritis in the UK who are taking etanercept, the only biologic therapy currently licensed to treat the condition, are on a register funded by the manufacturer of the drug. The new register will include up to 250 youngsters who are taking one of the other seven existing biologic drugs. Although the drugs are only currently available offlicence, there is increasing evidence that these alternatives are also effective. Biologic drugs are a new class of drugs which have transformed the treatment of www.arthritisresearchuk.org in rheumatic disease epidemiology at the University of Manchester, who is in charge of the register. “Although the new biologic drugs have revolutionised the treatment of JIA they are not a cure, and children need long-term treatment. Parents and children ask about side-effects and whether or not the treatment will work for them. The answers to such questions are currently lacking, and the long-term risks are unknown. We expect the register and the biobank to answer those questions.” Dr Hyrich added there was increasing evidence that there were occasions when an alternative to etanercept as a first line biologic should be considered, and newer biologic drugs were on the way. “Hence the need for a national demographic picture of biologic use in children is crucial,” she said. JIA expert Professor Helen Forster with a young patient “Until the emergence of biologic drugs, treatment options for severe JIA were limited to methotrexate and steroids, although many children failed to respond adequately or developed side-effects,” explained Dr Kimme Hyrich, senior lecturer Children being started on biologics will have their details entered on the register. A control group of children starting the conventional therapy of methotrexate will also be followed, to compare the outcome. To date 18 hospitals are involved in the study and within the first year 50 children receiving a biologic and 50 controls have been added to the register. Arthritis Today 07 Hear again with nothing in either ear Research news Give your life a lift ® Enjoy the home you love If you have a problem with your hearing but would suffer discomfort with a fitting in your ear then the Evo 1 could be the digital answer Evo 1 comes from BHM, experts at putting hearing aids onto glasses. Now they can fit a digital hearing aid onto your glasses! This incredible hearing aid is suitable for people suffering from a mild to severe conductive hearing loss. And their hearing aids are nearly invisible because they are hidden in the arm of your spectacles. The glasses are attractively styled and few will guess that they contain a high quality digital hearing aid. Their precise technology is tried and trusted and they have refined it even more with their latest generation of the digital Evo 1. And if you don't wear glasses then there is a selection of attractive ladies and gentlemen's frames available. For more information and a FREE brochure freephone 0800 740 8680 please quote reference EVOP5247 Or go to www.specaids.co.uk and enter EVOP5247 Hidden Hearing Ltd Maidstone ME14 1HL www.hiddenhearing.co.uk Why compromise your lifestyle and freedom because of difficulty getting up and down the stairs? Please post me free and without obligation details of the Evo 1 Digital Spectacle Hearing Aids. Mr/Mrs/Miss First name Surname •Free home trial •Rent or buy •New or reconditioned •Slimline fold-away design •Direct from the manufacturer •Next day installation available •Safe and reliable • Easy to use controls Address Call now on freephone 0800 326 5137 Postcode Tel No for a free no obligation quote (in case we need to confirm your address) Phone or send coupon today (No stamp required) to Hidden Hearing Ltd, Freepost MA117/003, Medway Street, Maidstone ME14 1BR EVOP5247 People who take anti-TNF therapies for inflammatory arthritis are unlikely to face an increased risk of cancer, new research suggests. A study presented at the annual congress of the European League Against Rheumatism (EULAR) in London this spring looked for an association, after previous research suggested that taking anti-TNFs might increase an individual’s risk of developing cancer. But the nine-year follow-up study at Gentofte University Hospital in Denmark found no evidence of an overall increase in risk among this group of patients. The researchers analysed data on 13,699 patients with rheumatoid arthritis, psoriatic arthritis or ankylosing spondylitis, 41 per cent of whom (5,598 patients) had started taking anti-TNFs. No difference And there's nothing in the ear to irritate you or be seen. So if you feel you are missing out when you are watching TV or going to the theatre, cinema, meetings or out shopping then take a look at the Evo 1, it could bring the joy of living. Study finds no evidence of link between anti-TNF drugs and increased cancer risk www.arthritisresearchuk.org When the incidence of cancer among patients who took anti-TNFs was compared with that among patients who had never taken the drugs, the researchers found no difference in the risk of developing cancer. There was also no association between the duration of antiTNF therapy and risk of cancer. Furthermore, the researchers found that a person’s risk of developing a first cancer was not linked to the type of arthritis they had. Dr Lene Dreyer, from the hospital’s department of rheumatology, said: “TNF is a small signalling molecule called a cytokine and is able to inhibit the development of tumours by interfering with signalling pathways. Therefore drugs targeting TNF can influence the development of tumours, although the extent of this impact remains unclear. “Some studies have suggested that taking anti-TNFs may increase an individual’s risk of cancer; however, this study provides long-term evidence that an overall risk of cancer is not associated with this group of treatments.” “Reassuring” A spokesperson for Arthritis Research UK, which pioneered and developed the treatment for inflammatory arthritis, said the results of the study would be reassuring to people taking anti-TNF therapy. “Our own studies have not established a link between anti-TNF and developing cancer,” she said. “However, anti-TNF is not recommended for people who have previously had cancer – especially in the ten years before considering starting anti-TNF – because it may increase the risk of the original cancer coming back or another one developing.” The charity hosts a national biologics register at its epidemiology unit at Manchester University, which monitors levels of infection, adverse reactions and the progress of patients with severe rheumatoid arthritis and other inflammatory types of arthritis on anti-TNF therapy. Arthritis Today 09 Hand osteoarthritis Surgical options for hand osteoarthritis Hands on approach to osteoarthritis Thumb joint: The commonest form of surgery option for hand osteoarthritis is a trapeziectomy, also known as an excision arthroplasty, which has an excellent outcome. Surgery involves the removal of the thumb joint, replacing it with an augmented ligament reconstruction. The thumb joint can also be replaced but there are no long-term results available; or fused, again, results are not particularly good. Knuckle joints: Replacement is a good option, fusion much less so. Middle finger joint: Fusion is a good option. Replacement is also possible, but although this approach removes pain, it does not provide extra movement. Stiff, painful hands can make everyday life almost impossible. New research is showing how to improve the quality of life for those people who are affected. Finger tip joints: These cannot be replaced; only fused, leading to some restriction in movement. Imagine not being able to open a tin, peel or chop vegetables, dry yourself properly after a bath or even pick up a kettle to make a cup of tea; everyday activities that most people take entirely for granted. It became increasingly challenging for Christine to hold a pen or a sewing needle, and she found that paint brushes slipped out of her hand. “The kind of things you take for granted became very difficult,” she says. start, will look at the effectiveness of thumb splinting. Yet for people with osteoarthritis in their hands, the constant pain and stiffness in their fingers or thumb joints make such basic activities extremely difficult. And while it’s generally recognised by the medical profession that rheumatoid arthritis can have severe, painful and deforming effects on the hands, the same recognition is not accorded to people with osteoarthritis. “I wanted to get a knife and chop off the lumps on my fingers…” Sixty-eight year-old Christine Walker from Cheshire has suffered from severe nodal osteoarthritis for the past 15 years. “A number of times I just wanted to get a knife to my hand and chop off the lumps on my fingers; they were so painful,” she says. “It’s also very painful, especially when I wake up in the morning. I can’t turn the pages of a newspaper, dry myself with a towel after a bath; I can’t write very well – it looks like a spider has crawled across the page – and my thumbs go numb when I’m cold. Carrying heavy shopping bags is a problem; I can’t put gloves on – or dry spoons! I just about cope, but it’s no fun at all. If you don’t have the use of your hands, you’re stuck.” In the SMOotH study (which was presented at a major European rheumatology conference, EULAR, in London in June) Professor Dziedzic and OT colleagues recruited 257 people with hand osteoarthritis to test the effectiveness of joint protection and exercises, both delivered by an OT. Education – which involved giving some patients an educational leaflet – was also assessed. Christine developed knobbly, painful fingers in her 50s while working at Manchester Metropolitan University. “I get red lumps on my fingers like small cysts which are very painful while they are growing, but once they’re calcified they hurt less. But they look horrible and my hands have got progressively stiffer.” 10 Arthritis Today A real mine of information Christine Walker, pictured above and left, with a variety of the gadgets that make everyday life easier Arthritis Research UK Primary Care Centre at Keele University, more than 12 per cent of people over the age of 50 have severe hand-related disability. Of these, 38 per cent had seen their GP but only three per cent had seen an occupational therapist (OT); therapists who help people with daily living by giving practical advice on aids and equipment. The research also showed that many people with hand osteoarthritis who went to their GP had been told that nothing could be done, so they never went back. Sixty-four year-old Penny Hogg from Bramley near Guildford, has had a similar experience. “I have osteoarthritis in both my thumbs, which makes menial tasks very tough,” she says. What can be done? So what can be done to help people with osteoarthritis of the hand? Joint protection and exercise are two very practical options, and evidence has shown that both approaches used together can be helpful. The hand exercises were based on what OTs currently use in their NHS treatments Krysia Dziedzic, an academic and involved strengthening and physiotherapist and professor of musculoskeletal therapies at the Arthritis mobilising exercises. Joint protection was Research UK Primary Care Centre at Keele all about group work, where participants were shown gadgets to use to help them – and a longstanding expert in hand Unlike replacement surgery of the larger osteoarthritis – is involved in two Arthritis prepare a simple meal and techniques to help them cope with everyday activities. joints in the body such as the hip or knee, Research UK-funded clinical trials into finding more practical ways of improving They were then encouraged to go out surgery to replace joints in the hand is and buy those gadgets which worked treatment. The first, which has recently not widely performed in people with osteoarthritis. And until recently the been completed, aimed to find out which best for them. standard approach to treating of the two treatments, joint protection or Christine Walker took part in the SMOotH osteoarthritis in the hand was taking pain hand exercises, worked better than trial at Leighton Hospital. “It showed me medication. some very practical ways of coping, and advice leaflets. The second, about to Osteoarthritis of the hand is a big problem, which until fairly recently has not been addressed by researchers. According to a recent study at the www.arthritisresearchuk.org www.arthritisresearchuk.org Arthritis Today 11 was a real mine of information,” she says. “I thought I knew every single modern piece of equipment and aid but I had my eyes opened! The group was a great source of information, with tips from other people, too.” “I’d struggled with potato peelers and tin openers but found there were much better ones available. We were shown how to squeeze out a dish cloth, how to hold a kettle with two hands and take the top off a hot water bottle and shown gadgets that release the vacuums in jars. It was really practical information of interest to people like me and it made an enormous difference.” Christine also found the education arm of the trial useful too. “I learned that osteoarthritis is all about wear and repair, not wear and tear; something I hadn’t thought about. It gave me insight into what was going on under the skin.” The results of the trial are yet to be published but the findings are important, as they show that simple joint protection approaches can be effective. “Joint protection gives people some control over their pain…” “It’s easy for people to pick up joint protection techniques that help them, and this approach very quickly gives people some control over their pain and gives them a feeling of confidence that they can do something about it,” Professor Dziedzic explains. “Joint protection is easier to adapt into their everyday lives than activity or exercise.” Building on these results, Professor Dziedzic is now liaising with Dr Jo Adams, senior lecturer and professional lead in OT at Southampton University, on a two-year pilot trial of 30 patients whose osteoarthritis affects specifically their thumbs. Lupus: a special report George’s living legacy On 20 March 2009 I underwent an operation to give a kidney to my younger brother, Francis. Aged 53, over a period of months I was introduced to the remarkable world of transplant surgery and living donorship which is, in these days of so much criticism of and despair about our health service, a beacon of positiveness and quality. But before describing the transplant experience some background about Francis’s health is necessary. Francis, who is 46, had had a long history of kidney failure. A serious accident involving major head injuries when he was 13 resulted in many years of ill health, and he contracted lupus in 1987. Lupus is an autoimmune disease and analysis at the time and afterwards confirmed that the onset of lupus resulted from Francis having previously contracted Henoch-Schönlein purpura, a type of vasculitis. Total renal failure The lupus took hold rapidly and a few months later he suffered total renal failure. Emergency treatment saved his life and led to a programme of dialysis to keep him alive. Despite the short-term devastating effect of the lupus, over a period of years it was controlled by careful medication until the threat receded for good. George Plumptre, on the right of the picture, with brother Francis 12 Arthritis Today Dialysis was a wonderful invention and offers life to people who, a generation www.arthritisresearchuk.org The pilot aims to find out if as well as offering one-to-one consultations with OTs providing joint protection and exercise, a thumb splint can make a difference. The findings will be used to design a full trial. Use of a placebo splint will help to establish whether it is the splint itself that is effective or the whole procedure of providing a splint. “We found that 90 per cent of the people in the SMOotH trial had some problems with their thumbs, and we know that 20 per cent of the population aged over 50 have osteoarthritis of the thumb – it’s one of the most common sites of osteoarthritis and pain, yet again, rarely considered by researchers,” says Professor Dziedzic. Patients will take part in forums to discuss their experiences and impact of osteoarthritis of the hand and also their treatment preferences. They will also be asked to give their input into the best type of splint to be used. “We want to be able to produce an evidence-based package of the best occupational therapy care for patients.” Christine Walker agrees: “If GPs and nurses could give out the tips we learned in the trial to their patients during their consultations it would be hugely helpful, and enable people to manage most of things they want to do.” • For more information on joint protection see Arthritis Research UK’s new booklets: Looking after your joints when you have arthritis, Everyday living and arthritis, Hand and wrist surgery and Splints for arthritis of the wrist and hand available at 0300 790 0400 or [email protected] They can also be downloaded from our website at www.arthritisresearchuk.org Two years ago former Times gardening correspondent George Plumptre donated a kidney to his brother Francis, when lupus caused his kidneys to fail. Now chief executive of the National Gardens Scheme, which made Arthritis Research UK its guest charity in 2010–11, he tells how his donation transformed his brother’s life. ago, would have died. But it is a mechanical alternative to a complex bodily function and can never provide the same service. In 1993 the long-awaited breakthrough was offered when he had his first transplant, with a cadaver kidney as was the norm at that time. But the transplant failed, Francis rejected the kidney and after a period of lifethreatening illness he had no option but to return to the bleak routine of dialysis three times a week. the third. Largely for reasons of practicality (such as one brother living in Australia) I was the one who took the decision to be tested as a potential donor first. I had the crucial blood test at Guy’s on 24 September 2008, the results of which would show whether I was a compatible blood group and, crucially, whether I was a good tissue match. Tissue matching is measured from 1/6 to 6/6 and we knew that anything below 5/6 would cause Just before Christmas 1997 he was told by complications because of Francis’s the renal unit at Guy’s, where he had been antibodies. a dialysis patient for some years, that they I was a perfect tissue match could give him a new transplant with When my result came through it another cadaver kidney. This was a success and he returned home to embark confirmed I was a perfect 6/6 tissue match. on a more normal life than had been possible for a decade. But cadaver kidneys Making the decision to proceed was easy, have a limited life of often little more than I knew I could offer Francis the best 10 years. In late 2007 Guy’s confirmed that possible chance of improved health and his kidney was deteriorating and that he long life and I was conscious of the had a maximum of two years before it privations he had suffered since his youth. ceased functioning. Nonetheless, as a donor you are voluntarily putting yourself on the line Having had two transplants and with his and introducing great turmoil into your long history of ill-health and associated life. medication, Francis was an unusual patient. Most significantly, he had built up During the period of four months that I powerful antibodies in his blood so a new underwent different tests my main worry kidney had to be very well matched. And was that some problem would prevent that is where I came in. We are a family of me from being a donor. The operation was originally scheduled for late January five brothers, Francis the youngest, me www.arthritisresearchuk.org but queries thrown up by my tests caused a delay until 20 March. During the delay Francis’s kidney function deteriorated unexpectedly fast and he had been forced to start dialysis. On the operation day I was told by my surgeon that they had found I had a hernia, which he would deal with at the same time as removing my kidney, the whole operation to be performed laparoscopically (key-hole surgery). Perhaps because of the impact of the hernia as well, when I first came round from the anaesthetic I was in considerable pain and it was a real shock. But after six days I was discharged from hospital to recuperate at home and was amazed at the What is lupus? Also known as systemic lupus erythematosus or SLE, lupus is a serious inflammatory disease that affects the skin, joints and internal organs, and in severe cases can be fatal. There is no cure and people with the condition may have to take medication for the rest of their lives. However, current drugs are not particularly effective and many sufferers have a poor quality of life. Arthritis Today 13 QUALITY BRANDED TROUSERS AT noticeable rate of my recovery during the weeks that followed. For Francis, the fact that the kidney started working straight away had the immediate effect of making him feel better, even while he was recovering from the operation. It was amazing to watch and I do not think any of us had been prepared for the transformation of his daily quality of life which it brought about and which continues today, more than two years later. Looking for the genes that may cause lupus Arthritis Research UK is currently running the UK’s biggest-ever study to discover the genes that cause lupus. And the scientist behind the study believes it could considerably advance understanding of the disease and could also result in a genetic test predicting who is most likely to develop the condition. Professor Tim Vyse and his team at King’s College London are taking advantage of the latest advances in gene technology to analyse DNA samples from 5,000 people with lupus from all over the UK, Europe and Canada, in order to identify the full set of genes that predispose them to getting the condition. They are being funded by a grant of £1.7 million from Arthritis Research UK through the generosity of a private donor. As well as finding out how many genes contribute to the development of lupus, the team also wants to establish whether genes that cause the condition also influence the severity or type of lupus and whether 14 Living donation is the key feature to future success Living donation has revolutionised kidney transplants and any renal surgeon or physician will tell you that it is the key to future success. The first successful living Sections of this article originally donor transplant was carried out between appeared in the Mail on Sunday in 2009. two identical twins in 1954. But thereafter a lack of effective immuno-suppression Arthritis Research UK currently drugs (which prevent rejection of the spends £6.5 million on research into transplanted kidney) meant that the few lupus, including lupus nephritis. • • particular organs of the body such as the heart or kidneys are likely to be involved. In the future a genetic test could become available to help speed up the diagnosis of lupus in patients with suspected autoimmune, inflammatory forms of arthritis. among others, has already identified some of the genes implicated. “However, we have only identified the ‘tip of the lupus genetic iceberg’, as the studies conducted so far have not been large enough. Our study is more than twice as big as all the other studies combined, so we are hoping that we will be able come up with some really useful results in order to identify the ‘how and why’ of lupus.” Professor Tim Vyse In the short term the main aim is to discover many more genes that cause the disease. The team will then go on to determine how these genes increase the risk of developing lupus. Professor Vyse, professor of molecular medicine at King’s College London, said: “There is a significant risk to the development of lupus; for example, the brother or sister of an affected person is over 29 times more likely to develop it than the rest of the population. Our group, NEW LOW PRICES NOW AVAILABLE IN 2 STYLES AND 8 COLOURS ROOMY CUT FOR COMFORT “Because lupus mimics so many other forms of inflammatory arthritis, there are often long delays in diagnosing the condition, and in the shorter-term tracking down the genes responsible could also help speed up this process.” HALF HIGH STREET PRICES NEW! 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You can choose either style MT129 with 2 front frogmouth pockets or style MT164 with 2 classic side slant pockets. There is also one back pocket and raised seam detail to create a very distinctive appearance. The top quality specification also includes a foolproof zip fly. Beautifully crafted in the finest 100% polyester to resist creases and retain their fine appearance wash after wash. Available whilst stocks last in sizes to fit you. Both trouser pocket styles are available in a choice of 8 smart colours in waist sizes 32” to 48”: GREY, NAVY, AIRFORCE, BARK, BLACK, LIGHT BLUE, BISCUIT and SILVER inside leg 27”, 29”, 31” and 33”. And 3 smart colours in waist sizes 50” to 64”: GREY, NAVY and BLACK inside leg 29”, 31” in MT164 SLANT POCKET STYLE ONLY. REMEMBER! - ALL SIZES ARE AT THE SAME LOW PRICE - JUST £19.99 – NO EXTRA FOR LARGER SIZES! Silver Navy Phoning is quicker than posting – order now! 24HR TELEPHONE ORDERING 0871 911 9999 Airforce Calls cost 10p per minute from BT landlines but may vary depending on your phone company or if using a mobile. MASTERCARD/VISA/MAESTRO/DELTA fax 0871 911 0605 or visit our website Grey (Frogmouth Pocket) www.chums.co.uk/offers and enter media code: AT711 Send to: Chums Ltd (Dept. AT711), P.O. Box 50, Prescot, Merseyside L34 9GX. Chums Ltd (Dept. AT711), P.O. Box 50, Prescot, Merseyside L34 9GX. PLEASE USE BLOCK CAPITALS. Please send me items indicated Bark QTY The team expects to produce the first set of research papers of early results later this year. Professor Alan Silman, medical director of Arthritis Research UK, said the charity had high hopes of Professor Vyse’s genetic research: “The drugs for lupus are not as effective as we would like. Discovering how many genes contribute to disease development is crucial so that we can work to produce new therapies. 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Personal shoppers welcome at our showroom. Open Mon-Fri 9am-4pm. M57 junction 4, off School Lane, Unity Grove, Knowsley Business Park, Liverpool L34 9AR. Post Code Email Telephone MEDIA CODE AT711 FROM TIME TO TIME WE MAKE OUR MAILING LIST AVAILABLE TO OTHER COMPANIES WHO MAY HAVE OFFERS OF INTEREST TO YOU. IF YOU DO NOT WISH US TO DO THIS, PLEASE SEND YOUR NAME AND ADDRESS TO CHUMS LTD. Chums Ltd. Co. Reg. No. 1561474 The brothers: Francis Plumptre on George’s shoulders in 1965 times the operation was tried again most ended in failure. Not until the introduction in 1983 of the first reliable immuno-suppression drug called cyclosporin were improved rates of success made possible, and since then refinement of these drugs has been the key to successful living donor transplants. 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EASY TO FASTEN FRONT HOOKS 8.00 am - 9.00 pm Monday-Friday 9.00 am - 8.00 pm Saturday-Sunday • FREEPHONE 08082 081329 Please send me one Comfort Bra for just £19.95 + £3.95 insured p+p Comfort Bras for just £39.90 + £3.95 insured p&p – get a third FREE! I enclose a cheque/PO payable to Windsor Products for £ Please charge my VISA/MASTERCARD/MAESTRO/SWITCH/DELTA: Start Expiry Title PLEASE PRINT INDICATE QUANTITY ORDERED UNDER SIZE & COLOUR SM MED LGE XLGE XXLGE XXXLGE Colour 32-34 34-36 36-38 38-40 40-42 42-44 White Lace White Black Beige Ask for Dept 330CB Post To: Windsor Products, Dept. 330CB, Emery House, Greatbridge Road, Romsey, Hampshire SO51 0AD BUY 2 GET 1 FREE – order two How did you go about updating them? How different are the new booklets? © 2011. Blakefield LLP, Hamilton House, 2 Station Road, Epping CM16 4HA Lines Open • More information is included about our research activity and where applicable it mentions specific projects we are funding. Issue No Signature Name D.O.B Address Post Code Telephone Email Delivery normally within one week but please allow 28 days. If you do not wish to receive other interesting offers from reputable companies, please tick this box . Postage and packaging is non-refundable Buy online at www.windsorproducts.com/330CB Michelle Harrison, information content manager What was the rationale for updating the booklets? We had to change all the booklets after the charity rebranded in March 2010, so the content was reviewed at the same time to bring them all up to date. All the text was rewritten as part of the rebranding process, and they were given a more contemporary look and style in line with our new brand. We also wanted to add some new elements to make it easy for patients to read, understand and www.arthritisresearchuk.org • • • We conducted some face-to-face research with patients, which supported the need for high-quality arthritis information that is relevant, They are full colour and full-colour straightforward and authoritative. photography has been used for the Patients identified the need to strike a first time, including pictures of balance between medical texts which symptoms and 3D illustrations, to can be weighty, technical and academic, help explain things better. and leaflets which could be seen as too They have changed format to A5 so flimsy and poorly produced, making they are easier to handle and the patients feel they were not taken information can be displayed in a seriously. We think we’ve got the balance much more effective way. right, and that our booklets are The content and headings have been authoritative and based on evidence of standardised, following an easy to best practice but are also easy to read. understand Q&A format, to help make Medical professionals have also been it easier to find the relevant involved in the rewriting and reviewing of information. all the text to ensure we have the latest They all include an at-a-glance section information in the booklets. for easy reference, which also makes the most important points easily digestible. How are the booklets produced? • Key messages and important points are highlighted throughout the booklets. The booklets go through a rigorous process, which includes review by a number of medical professionals Arthritis Today 17 The Stannah Promise New booklets launched Bespoke stairlifts that fit perfectly to your stairs. • Buy or rent all our stairlifts • 2 year warranty and 2 free services* *Terms and conditions apply. For a free information pack and DVD call 0800 715 419 stannahstairlifts.co.uk What is happening with patient information on the website? Always true to our word Does sitting make your back ache? Use the MEDesign® Backfriend® Driving Working Relaxing We designed it to relieve back pain and thought Backfriend® was an appropriate name. Today more than 600,000 users in 35 countries know the benefit. - looks like we got the design righ t ! For every 100 we send out, 4 come back - looks like we got the name right to o ! You can easily carry it around to sit in any seat or chair (...well almost every seat). There’s a 14 day home trial plus a 12 month guarantee and 7 colour choices. AND we don’t have salesmen and never pass on your details For full details, phone us on 01704 542373 E-Mail us on [email protected] or post the coupon. POST the coupon to MEDesign Ltd, FREEPOST, Southport, PR8 1BR Name: 11-AT7 Address: ✂ Portable Anywhere 18 Arthritis Today Post Code: How did you get over the perennial problem of balance; some people think they’re too upbeat, others that they overplay the severity of the condition. This is a very difficult thing to get right, but it is important for us to show what can be possible and to remain optimistic, while also pointing out the serious nature of some of the conditions. The content focuses on covering all the possibilities and options, to give the reader all the essential initial information. The hope is that they can then search for more information on areas they want to or consult with their healthcare team. FREEPHONE: at Home including doctors, nurses, physiotherapists, occupational therapists and surgeons to ensure quality, currency and medical accuracy. They are also reviewed by members of the public and any relevant societies, and the production is overseen by a medical expert in the field. They are then re-written by an editor to make it easy for people to understand, and the actual proofs are tested again by members of the public to ensure the text and design both work. The PDFs are being uploaded as we speak and the new versions are being adapted for the website and will be posted as they are completed over the next few weeks. We are also reviewing the way they are represented on the website so they are as user-friendly and accessible as possible. Why have line drawings been replaced by photos? The line drawings have been replaced by photos when a photo is more descriptive, although line drawings do still appear where we feel it is easier to understand. The introduction of the photos has helped to create a more contemporary feel overall and has helped to bring them to life. Have you had any feedback so far? So far we have received some really great feedback. We act on all feedback we receive, whether from the public or health professionals, to ensure it is as good as it can be, so we are happy to hear your thoughts, good or bad. Are there plans for any new titles? We want to continue to work on the range to provide the best information source we can to patients and the public and welcome any suggestions. We are also working on some shorter articles that will start to appear on our website over the coming months, giving information on topics we are being asked about. The new booklets are available to order or download at •www.arthritisresearchuk.org by email at enquiries@ arthritisresearchuk.org, telephone at 0300 790 0400 or by post to Arthritis Research UK, PO Box 177, Chesterfield, Derbyshire, S41 7TQ. www.arthritisresearchuk.org Back to basics A study looking into ways of improving the outcome of back surgery has thrown up some unexpected findings. Jane Tadman reports. Can post-operative exercise and rehabilitation help people to recover from back surgery? Or is up-to-date information and advice just as good? Those were the questions posed by Professor Alison McGregor when she embarked on an Arthritis Research UK-funded clinical trial involving more than 300 patients with back pain. Although most people with back pain don’t need surgery, for a small number it can help. An operation called a discectomy relieves the pressure on the spinal cord caused by a prolapsed disc, and can be effective in reducing sciatica in up to 90 per cent of cases. A second small group of usually older people whose back pain is due to spinal stenosis – narrowing of the space around the nerves in the spinal cord – can expect a 50 per cent improvement from an operation known as laminectomy or decompression surgery. Post-operative care was patchy Previous research had shown that post-operative care was patchy, minimal and varied from surgeon to surgeon, and Professor McGregor’s reasoning at the time of setting up the clinical trial was logical. By the time most people with low back pain undergo surgery, their spinal muscles are seriously de-conditioned because they will probably have been in severe pain and unable to have done much exercise for some time, so it made perfect sense to assume that a rigorous regime of exercise starting six weeks to three months after surgery would help them regain some fitness and more mobility. It was equally intuitive to assume that giving patients a booklet based on clinical evidence and lots of good common sense about keeping active – stressing that activity will not harm the back but actually heal it – would also have a positive benefit. www.arthritisresearchuk.org Neither approach makes any difference However, Professor McGregor, professor of musculoskeletal biodynamics at Imperial College London, has found that in fact neither approach makes any difference to the outcome of surgery in terms of functional disability. As she prepares to publish the results of the six-year-trial in the journal Spine Professor McGregor is philosophical, believing that although it didn’t produce the outcome she’d expected, the study threw up a lot of interesting information that may help to improve the way that patients are treated after back surgery. “We found that there was a huge discrepancy between expectation and what actually happened,” says Professor McGregor. “There was also a correlation between what you achieve and what you expect – if people had a higher expectation they got a better outcome because they tended to work harder at it.” In general terms, people who had undergone discectomy surgery were happier and more satisfied with the outcome than those patients having laminectomy. One important finding was that most patients’ condition didn’t improve much beyond three months after surgery – which was when the rehabilitation classes usually started. So it may be that rehab might have worked better had it begun sooner after surgery. Inevitably some patients remained nervous of exercising after the surgery because they feared it would damage their back in some way, which may go some way to explaining the fact that 41 per cent of those in the rehab class didn’t attend a single session. Arthritis Today 19 Negative experiences The patients’ experience Patients reported a number of negatives about their experiences of spinal surgery. These included a lack of information and advice, dissatisfaction with GPs in terms of diagnosis and management, disappointment with the outcome of the surgery and a perceived lack of respect by their surgeon. Colin Scott: in the rehabilitation and booklet group Colin Scott had spent ten months off work in extreme pain before having a “Many people consented to surgery because they were desperate, but they didn’t know what to expect and that rehabilitation after surgery was not routinely provided. Many felt isolated,” says Alison McGregor. “Some people found that unless they really pushed for answers they wouldn’t get them and that there was a real need to be assertive.” She is now planning future research looking at ways in which the NHS can provide better care pathways for people who have spinal surgery, and to receive better information in different formats. discectomy two years ago, so after the operation he was determined to do everything he could to get back to a normal life. His operation was a complete success and he was up and about after 24 hours. A steward with British Airways, now aged 53, Colin attended all but one of the rehab classes after his operation and found them very useful. In fact, he still does the exercises now; largely pilatestype exercise to strengthen the tops of the legs and buttocks. “I do understand that other people are not as diligent but I had had a very painful year or so and I was at the stage where there was no way I was going back,” says Colin, who was back at work full-time within three weeks of surgery. “I was determined to take advantage of everything. Colin Scott “I didn’t find the back booklet as much use. I’m the sort of person who if you show me how to do something I will get it and then go and do it on my own. Sometimes people need to be encouraged but I am too young to sit down and not do anything; I wanted to get back to fitness.” What Colin also found immensely helpful was the fact that from start he saw the same surgeon who operated on him all the way through. He adds: “She suggested that I did the exercises and I felt that really boosted me. I was very lucky; it made a big difference. I was very happy with what happened to me. I had fantastic treatment with all the rehab, and, at the end of it, it meant I have got my life back. I can go walking with the dog, go swimming, go to the gym again. It’s made a massive difference to me.” The Arthritis Research UK FASTER trial More than 300 patients from seven hospitals in London took part in the £260,000 study, which compared the effectiveness of a rehabilitation programme and an education booklet for the post-operative management of people having discectomy or laminectomy. Patients in the rehab group had a programme of supervised exercises, including general aerobic fitness work and stretching and strengthening exercises for the back, leg and abdominal muscles, twice a week for an hour and starting six weeks to three months after surgery. Patients in the booklet group were handed the educational booklet – based on evidence-based messages and advices – on discharge from hospital. Some groups had both the rehab and the booklet, and each group was also compared with the “usual care”; which means whatever post-operative care individual surgeons normally employ – which might be nothing. 20 Arthritis Today Steve Holdsworth: the “usual care” group Forty-seven-year-old Steve’s experience of the aftermath of back surgery was not a particularly positive one. He was in the “usual care” arm of the trial. This meant he was not given any active treatment, so received no rehab, nor was he given the back surgery booklet. “Usual care” in his case meant no post-operative treatment at all. Steve had had acute episodes of back pain on and off for years but two months before surgery he found he couldn’t stand up. He was in such agony he was www.arthritisresearchuk.org Questions and answers Mary Waddington Steve Holdsworth taken to A&E for treatment, and on discharge he was advised to have an immediate MRI scan. This revealed that he had extreme damage to his cauda equina nerve which had caused irreparable damage, leaving him with distressing symptoms, including incontinence and sexual dysfunction. Although the decompression surgery he underwent at Charing Cross Hospital was a “success”, in that it reduced the pressure on his spinal cord and stopped the pain, the damage had been done. “I was in hospital for two nights and although I couldn’t fault the in-house care, after I was discharged I was very much left to my own devices, which I was very disappointed with,” says Steve, who works as a fundraising manager for a small homelessness charity. “Because the surgery was deemed a success as far as they were concerned, I was off the radar. But because the damage I had to my cauda equina nerve is so rare there wasn’t any sort of support group for it, and because the symptoms were nothing to do with my back, no-one was interested. It would have really helped to have had a bit of a more joined-up approach from the health service.” Steve went back to work within two weeks of surgery and although he has ongoing problems, he no longer has back pain. Mary Waddington: in the rehabilitation group Mary’s decompression surgery two years ago was deemed a success and after ten months of sleeping just two hours a night because of intense pain, surgery to release the sciatica in her leg gave her much-needed relief. But it proved to be short-lived and she has had to undergo further surgery to release the femoral nerve in her leg as unpleasant sensations gradually crept back. Mary, aged 62, who works as an extra in films and TV, found the rehab programme very helpful. “I was extremely grateful to have physiotherapy after the operation and I benefited from one-to-one therapy, because I was in the trial, but the NHS can’t run to that sort of provision,” she says. Mary attended every rehab class at Charing Cross Hospital and tried to carry on exercising at home, but found away from the group encouragement her motivation waned. Although back at work, she has had to adapt to a less active lifestyle: she has to lie down at least once a day and still has to have steroid injections for her back pain. www.arthritisresearchuk.org with Dr Philip Helliwell I’m 63 and have suffered from osteoarthritis for around 10 years. I’ve recently been diagnosed with chronic inflammatory arthritis, at which time my consultant also used the words rheumatoid arthritis. Although the blood markers were negative, which he said applied to around 30 per cent of sufferers, an MRI showed inflammation and degeneration around the joints of my hands. He’s prescribed methotrexate and folic acid. Are these conditions the same? I’d like to refer to my condition correctly. Nigel Jefferys, Horsham, East Sussex Nigel, sometimes the situation is not “black and white”. Of course people can (unfortunately) get two different forms of arthritis. If possible we like to keep the diagnoses made for any one person to a minimum. This is known as Occams Razor. William of Ockham was a logician and philosopher who introduced the “law of parsimony”. Essentially this suggests: “why use two explanations when one will do”. So, if one diagnosis can explain all your symptoms then this is the preferred assumption, and it does simplify treatment. However, having said all that, people with osteoarthritis can develop other types of arthritis. Chronic inflammatory arthritis is just a generic term to describe the condition and how it differs from osteoarthritis, and in such cases drugs like methotrexate are used. Rheumatoid arthritis is one form of chronic inflammatory arthritis but there are other types, such as psoriatic arthritis and gout. If it is not clear exactly what the underlying condition is then rheumatologists will often just call it chronic inflammatory arthritis. I am a 73-year-old woman, diagnosed with fibromyalgia 20 years ago. I have generally been able to manage this, and take no medication other than vitamin supplements. My GP has begun treating me for hypertension. As I have recently been diagnosed with Sicca syndrome (and am awaiting the results of a test for Sjögren’s) this provoked a major flare-up of the fibromyalgia. I wonder if other fibromyalgia patients experience difficulties in adapting to hypertensive drugs? June Tucker, Cheltenham, Gloucestershire Arthritis Today 21 PHOTO: DR P. MARAZZI/SCIENCE PHOTO LIBRARY I don’t think this is a problem confined to fibromyalgia patients. People often take several anti-hypertensive drugs before they find one that suits them. The side-effects can be quite strange and cover a lot of symptoms. Fibromyalgia can be associated with dry eyes and mouth (Sicca symptoms) both as an associated symptom and as a side-effect of drugs used to treat the disease, such as amitriptyline. Many people on amitriptyline (this class of drugs are known as tricyclics) complain of dryness. Is there any connection between hypermobility in joints and arthritis? I am 43, have suffered knee pain for years, have also herniated two discs in the last 10 years, and taking into consideration my age this seems to be a lot of problems for someone my age. Saying that, I did get knocked down by a car in 1985 and I was told I would get arthritis early on in age. I would appreciate your opinion please. Sue Stafford, Halesowen, West Midlands Professor Howard Bird, who has just recently retired after a long career working as a rheumatologist in Leeds, spent much of his early career looking at the relationship between hypermobility (bendy joints) and arthritis. He found that hypermobility predisposed people to a number of rheumatic complaints, one of which was a tendency to develop osteoarthritis at a younger age. Although the term hypermobility covers a “mixed bag” of diagnoses, those people who inherit the tendency can get other problems such as varicose veins, piles and slipped discs. This may be because the “tissue scaffold” is weaker than normal. Although people with generalised hypermobility are born like that it, is possible to acquire hypermobility in just one or two joints with use (or abuse if you like). There is no doubt that hypermobility can convey advantages in certain activities such as ballet, music and gymnastics, but it is a two-edged sword and it requires careful management to avoid future problems. In a letter to Arthritis Today (153) a retired consultant surgeon states that she had a meniscectomy “which of course resulted in osteoarthritis of that knee”. I would like to know the reason for this. I had a menisectomy, as part of an arthroscopic procedure three years ago, as I was already suffering from osteoarthritis of the knee. Despite extensive treatment the arthritis has now become, in the words of my consultant, “end stage” and I shall be having a knee replacement later in the year. In the light of the abovementioned letter, I am now wondering if this procedure caused the arthritis to become worse, or did the condition deteriorate over the passage of time (my general assumption). Linda Carlisle, Nuneaton, Warwickshire Good question. Some years ago it was found that having a menisectomy (removal of the knee menisci, or cartilages) predisposed to osteoarthritis in that joint in later years. Not surprisingly, a tendency to develop osteoarthritis in other joints increased that risk. Now, that study was done when menisectomies were achieved by opening the knee joint and the procedure was much more extensive than today’s keyhole approach, so it may not now be the case that osteoarthritis is a certain consequence of this procedure. You do have to remember, of course, that the reason for the torn meniscus (cartilage) may also be the reason for the later development of 22 Arthritis Today Focus on Newcastle The search for a cure Focus on Newcastle As Newcastle Musculoskeletal Research Group celebrates its new European Centre of Excellence status, Arthritis Today provides a research update from Tyneside where Arthritis Research UK currently invests £6.5 million. The burning question on the lips of everyone with arthritis is: where is the next “cure” going to come from? Osteoarthritis of the knee as seen on an x-ray osteoarthritis, that is injury to the knee. Nowadays, with the keyhole approach many people with torn menisci are found to already have established osteoarthritis and the arthroscopy (and menisectomy) is just one stage on the way to having a knee replacement. One will follow the other but it may be many years in between the procedures. I’m 39 and went through an early menopause. I have the early stages of brittle bone disease and have just been told I have osteoarthritis in the lower back and both hips. For about 20 years I have been a power walker. My GP, however, tells me to stop walking, especially on roads as it was very bad for my back and hips. I now only do about two to three miles three times a week. I find it a little sore when on the road but that night and the next day I’m in severe pain and feel my joints are very stiff to move. Should I give up or still do it? Christine Skelton, Drumquin, Omagh, Co Tyrone This is quite a dilemma. On the one hand you have osteoarthritis of the back and hips and power walking on hard surfaces is likely to aggravate it. On the other hand you have early osteoporosis and weight bearing exercise is recommended to delay further bone loss! I think you have to find a balance somewhere in between. Exercise has other benefits on the cardiovascular system and generally makes you feel good, so I would not like to discourage you from this. Have you tried painkillers or, dare I say it, antiinflammatory drugs to enable you to continue your exercise, perhaps less vigorously? 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] www.arthritisresearchuk.org The discovery of anti-TNF therapy by scientists at Arthritis Research UK’s Kennedy Institute more than a decade ago led to a worldwide revolution in the way that inflammatory arthritis was treated. Patients who once had few options beyond methotrexate were suddenly presented with a dazzling array of so-called biologic therapies that if not a cure, then enabled many of them to live near-normal lives. But for the 30 per cent of people in whom anti-TNF and other biologic therapies don’t work, or can’t be tolerated, new approaches are needed. And for sufferers of the most common type of arthritis, osteoarthritis, a side-effect-free form of pain relief or treatment to slow disease progression would be a welcome breakthrough. A cure is generally agreed to be way off, if it happens at all. Research… aims to induce remission Research that aims to improve treatments and possibly edge nearer to a cure is going on in a number of universities and medical schools, largely funded by Arthritis Research UK. In particular, this is research that aims to induce remission in people with early inflammatory arthritis by using aggressive early biologic treatment, and identifying those people in whom Professor Drew Rowan: “Understanding the disease process in arthritis is laborious, but we believe this knowledge will ultimately bear fruit.” this approach would be the most www.arthritisresearchuk.org Arthritis Today 23 beneficial so that they can be targeted accordingly. better outcome, to develop new therapies to switch off the disease (tolerogenic therapies), and experimenting with new cellular therapies,” explains professor of clinical rheumatology John Isaacs, whose specific field of experience and expertise is rheumatoid arthritis and therapeutic tolerance. At Newcastle University, researchers at the Musculoskeletal Research Group are involved in work which they are confident will lead to if not a cure, then certainly better treatment for rheumatoid arthritis and osteoarthritis*, and are taking different approaches which could have significant outcomes for patients. *Future editions of Arthritis Today will provide updates of results of the £2.2m osteoarthritis genome screening programme, arcOGEN, and also news of exciting new initiatives in tissue engineering for osteoarthritis in Newcastle. Scientists and clinicians involved in arthritis research at Newcastle University and the Freeman Hospital celebrated two prestigious accolades that confirm their status as leaders in their field. The Musculoskeletal Research Group comprises a large group of clinicians and scientists working together to improve the diagnosis, management and understanding of arthritic diseases. Their focus is a collaborative mix of basic science and clinical research projects aimed at addressing the problems of arthritis and agerelated musculoskeletal diseases, alongside other specialist areas in paediatric rheumatology and education research. EULAR, a European-wide scientific body whose chief aim is to stimulate research into arthritis and other 24 Arthritis Today • development of novel, experimental therapies for rheumatoid arthritis (Professor John Isaacs) • pioneering haematologic stem cell transplantation for scleroderma and other conditions (Professor Jaap van Laar). • b asic and translational research in osteoarthritis (Dean of Research Professor Tim Cawston and Professor Drew Rowan) The EULAR award, together with recognition from Arthritis Research UK, was presented at a special ceremony at the university in May and attended by local dignitaries, researchers, fundraisers and patients. • leading a major genome screening project arcOGEN, aiming to find the genes that cause osteoarthritis (Professor John Loughlin) Professor Alan Silman, medical director of Arthritis Research UK, congratulated the group, telling his audience that they A real breakthrough Plaudits for arthritis research in Newcastle The Musculoskeletal Research Group in the Faculty of Medical Sciences was awarded “Centre of Excellence” status by the European League Against Rheumatism (EULAR). The team was also recognised by Arthritis Research UK for its “outstanding contribution” to the charity in its 75th anniversary. Neither has yet completed, but John Isaacs is hopeful that progress will have been made by the end of this year. One or both could produce a real breakthrough in treating rheumatoid white blood cells and convert them into cells known as tolerogenic dendritic cells: cells which suppress immune system activity. They will then be In the first study, he and his team aim to injected back into the patient’s knee, develop a new cellular therapy that and be followed up for three months. actually switches off a patient’s The hope is that the symptoms of unwanted immune responses without rheumatoid arthritis will be effectively suppressing protective immunity, suppressed. which can leave people open to In the second study, co-funded by infections with other therapies. GlaxoSmithKline, the team has just Similar techniques have been used in started treating 40 rheumatoid arthritis cancer research (although in this patients with an anti-CD3 monoclonal situation the cells are designed to boost antibody therapy called otelixizumab the anti-tumour immune response) but that could “switch off” the disease this will be the first time it has been process, as part of a small phase 1 trial. adapted to rheumatoid arthritis and tested on patients. Twelve volunteers “Could work as well as from the city’s Freeman Hospital will anti-TNF but will have a undergo the therapy as part of a pilot, which could then lead on to larger more sustained effect” trials. The team hopes to establish that the drug – which has been trialled in type 1 In a nutshell the team aims to chemically manipulate a patient’s own diabetes – will be proven to be both As regular readers of Arthritis Today will be aware, Professor Isaacs has been involved in setting up two exciting, experimental trials of potential new therapies for rheumatoid arthritis, both funded by Arthritis Research UK, and which attracted national media coverage when they were announced. “What we’re trying to do in Newcastle for rheumatoid arthritis patients is threefold – to improve the diagnosis and targeting of patients so they have a arthritis, which is caused by the body’s immune system attacking joints, leading to inflammation. • key aspects of research into arthritis affecting children and teenagers (Professor Helen Foster) Professor John Isaacs musculoskeletal conditions, made the award to Newcastle on the basis of its impressive publications record in top academic journals. It is one of only six centres in the UK to have such status. Aberdeen and Glasgow Universities were also awarded Centre of Excellence status from EULAR this year. safe and effective at specific doses. Patients will be given increasingly bigger doses as the trial progresses. Professor Isaacs anticipates that otelixizumab could work as well as anti-TNF, but will have a more sustained effect from just a one-off course of treatment. Drew Rowan, professor of molecular rheumatology, a basic scientist who is working on related basic and translational research and in particular trying to understand inflammation and joint destruction in osteoarthritis, sounded a word of caution when talking about possible cures for that disease: “What we do in the laboratory today may take five to ten years before it starts to turn into potential treatment for patients,” he said. “Understanding the disease process in arthritis is laborious, but we believe this knowledge will ultimately bear fruit.” had made a phenomenal contribution to advancing the cause that the charity stood for, namely to relieve the suffering of people with arthritis. “We would not achieve our goals without people like you,” he added. • e ducational research (Dr David Walker and Dr Lesley Kay) Professor Silman also warmly praised local fundraisers who attended the event from Yorkshire, Northumberland and Cumbria. “You are the engine room of this charity, and without your commitment to the cause none of this research would have been possible,” he said. Arthritis Research UK, which currently funds more than £6.5m into research in Newcastle, said its honouring of the group was an acknowledgement of its all-round outstanding contribution to the charity over a number of years which has seen them emerge as national Dr Fraser Birell, a rheumatologist in leaders in a number of areas, for Newcastle, chats to a local branch example: member www.arthritisresearchuk.org Professor John Isaacs said: “These achievements provide a wonderful endorsement of the hard work performed by numerous individuals over the past 15 years, as well as to the integration of the teams in the laboratory and in the clinic. It is a tough challenge to achieve international recognition in medical science but we deserve to be where we are. “It is also fun to work at the ‘cutting edge’ and we aim to maintain our status by continuing to make important discoveries that impact on the management of Professor Alan Silman at the unveiling of the EULAR plaque musculoskeletal disease.” www.arthritisresearchuk.org Arthritis Today 25 24 UK Holidays Health & Mobility BRACKLESHAM BAY, WEST SUSSEX Self Catering Holiday Chalets and Apartment. Quiet flat picturesque site, 2 minute walk to beach, disabled access, pets welcome. Tel: 01243 674444 www.waveschaletrental.co.uk Derbyshire/Peak District Three beautiful barn conversion bungalows, near Ashbourne. Level access. One cottage, full disabled facilities. Tel 01335 370817 www.highmeadowcottages.co.uk 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. 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Olympia Publishers SALE £68 OFF UP TO † Dual Cleaning Systems FREE P&P worth £19.95 • FREE P&P worth £19.95 • Only 4.2kgs/9.4lb in weight • Easy to lift & manoeuvre • Powerful direct suction on all floor types • Unique easy-move design takes away the strain • Lifts & traps pet hair and odour fast! • Healthier cleaning with anti-bacterial protection and HEPA filtration dust-lock bags Dr Jane Goodall, Department of Medicine, University of Cambridge, Cambridge; targeting an important controller of the immune system, CHOP, for the treatment of inflammatory arthritis, £800,263, 60 months. Career progression fellowship Furniture Half price! Dr Emma Derrett-Smith, Centre for Rheumatology & Connective Tissue Disease, University College London, London; investigating the genes that cause scarring of the lung in scleroderma, £103,510, 24 months. we½ ight Riser Recliners the of m s t uprigo ht vacu ums selected chairs BRITISH BUILT Dr Carl Goodyear, Biomedical Research Centre, University of Glasgow, Glasgow; a two-pronged attack on rheumatoid arthritis: harnessing the body’s own defence mechanisms to fight both inflammation and bone erosion? £121,538, 24 months. INCLUDES HIGHEST QUALITY Portable Deluxe Cylinder worth over £130! 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By email By post If you do not wish to receive Special offers from selected companies we recommend by post, tick box. www.arthritisresearchuk.org Project grants Professor Andrew Rowan, Newcastle University, Musculoskeletal Research Group, Newcastle-upon-Tyne; tribbles: a new target for switching off joint destruction? £159,061, 24 months. Dr James Fisher, University of Birmingham, College of Life and Environmental Sciences, Birmingham; how does increased activity in the sympathetic nerves play a role in rheumatoid arthritis? £163,678, 36 months. www.arthritisresearchuk.org Dr Susanna Fagerholm, University of Dundee, Division of Medical Sciences, Dundee; unravelling the mechanisms behind lupus disease: how do changes in the ITGAM gene add to the risk? £207,196, 36 months. Dr Tina Chowdhury, Queen Mary University of London, School of Engineering & Materials, London; can we use exercise therapy to treat osteoarthritis? £90,642, 24 months. Equipment grant Professor Costantino Pitzalis, Queen Mary University of London, Centre for Experimental Medicine & Rheumatology, London; using state of the art equipment to improve the study of joint tissues, £53,977, 12 months. Pilot clinical studies Dr Nicola Crabtree, Birmingham Children’s Hospital NHS Trust, Paediatric Professor Andrew Cope, King’s College London, Academic Department Endocrinology, Birmingham; improving the clinical care of of Rheumatology, London; how does the protein Lyp control the way that children with bone disease: the UK Children’s Bone Density Study, white blood cells behave? £249,256, £28,046, 18 months. 36 months. Dr Francesco Dell’Accio, Queen Mary University of London, Centre for Experimental Medicine & Rheumatology, London; can we use nature’s own repair tools to stop cartilage breakdown in osteoarthritis? £192,489, 36 months. Dr Stefano Fedele, University College London, Eastman Dental Institute, London; a ‘salivary pacemaker’ to treat dry mouth: the LEONIDAS study, £29,981, 12 months. Barbara Ansell fellowship in paediatric rheumatology Dr Lang Yang, University of Sheffield, School of Medicine & Biomedical Sciences, Sheffield; a multidisciplinary approach to monitor the Mrs Maureen Todd, University of effectiveness of osteoporosis Glasgow, Institute of Child Health, treatment, £88,343, 18 months. Glasgow; study of the prevalence of musculoskeletal abnormalities, Professor Cosimo De Bari, University particularly arthritis, in children with of Aberdeen, Division of Applied Down’s syndrome, £46,214, 12 months. Medicine, Aberdeen; ‘bad’ stem cells: are they responsible for rheumatoid arthritis? £201,718, 36 months. Dr Andrew Hall, Laboratory Sciences, School of Biomedical Sciences, Edinburgh; a new ‘solution’ to protect cartilage cells during surgery, £98,205, 24 months. Dr Frances Hall, University of Cambridge, Dept of Medicine, Cambridge; new insights into immune Clinician scientist cell abnormalities in patients with fellowship Sjögren’s syndrome and their response to treatment, £43,400, Professor Christian Mallen, Keele 24 months. University, Arthritis Research UK Primary Care Centre, Keele; improving Dr Robert van ‘t Hof, University of the management of musculoskeletal Edinburgh, Rheumatic Diseases Unit, disorders in general practice: what Edinburgh; a new approach for restoring bone volume and strength, opportunities are we missing? £411,389, 36 months. £219,764, 36 months. Mr George Ashcroft, Woodend Hospital, Dept of Orthopaedic Surgery, Aberdeen; fast field-cycling: a new imaging method to measure disease progression in patients with osteoarthritis, £190,832, 24 months. Dr Ian Scott, King’s College London, Guy’s & St Thomas’ Hospital Trust, Rheumatology; combining risk factors to develop a new way to predict the risk of developing rheumatoid arthritis, £238,735, 36 months. Arthritis Today 27 The hints box Ayurvedic medicine helped my rheumatoid arthritis I was diagnosed with rheumatoid arthritis 12 years ago at the age of 28 and over the last couple of years my condition was getting worse and I was experiencing flare-ups on a more regular basis. In 2009 I visited the Yoga Show in London, where I attended an Ayurveda lecture. I was so inspired by the lecture that I decided to have an Ayurvedic consultation and after my first set of five massage-based therapies, herbal enemas, and Ayurvedic herbal medication I was amazed and delighted at how my body had improved. Throughout this period, I was very careful with my Ayurvedic diet, yoga (postures, breathing techniques, meditation) and other lifestyle instructions. Following the second set of treatments, my rheumatoid arthritis is now 100 per cent better. Occasionally, due to the cold damp weather or if there is a change in routine, my arthritis and bowels can be disturbed; however, this is bought back into control simply by itself by my Ayurvedic diet and the instructions given by Vishal Kohli, my Ayurvedic consultant. I feel very blessed and fortunate to have been guided towards Ayurveda Retreat. I am now a changed person on a journey to a healthier, more peaceful and happier life. For further information on Ayurveda Retreat please visit: www.ayurveda-retreat.co.uk Jagruti Mistry, Grays, Essex Editor’s note: Ayurvedic medicine is a system of traditional medicine originating in India. A herbal Ayurvedic preparation called Articulin-F scored two out of five for effectiveness in osteoarthritis in Arthritis Research UK’s complementary medicines report. 28 Arthritis Today I’m looking forward to buying comfortable, stylish shoes! Apricots ease the problem of constipation There is a very simple and easy way of solving the problem of constipation when I was so pleased to read your article about taking certain painkillers – eat dried designing better shoes for arthritis apricots. I have to have co-dydramol sufferers. At last someone has taken notice spread throughout the day without any of an obscure side-effect of rheumatoid problems and my bowels open every day arthritis. I have had the condition for many without any problem so try it for years and have always had difficulty yourselves! I eat two to four apricots a day. finding comfortable, smart shoes. So many You can safely eat more but remember of the wider shoes that you can buy look they do act as a diuretic so experiment to very frumpy and don’t have the support see what suits you. But they do work – so persevere! I also have a high fibre diet that is needed. I find that Hotter Shoes, including prunes and bran. though comfortable, do not really fit properly. Rheumatoid arthritis sufferers Gwynette Kern, Shrewsbury, tend to have pain in the ball of their feet Shropshire and toes that become deformed. If I order a wide fitting, the whole shoe is wide and therefore does not fit at the heel, which in my case is normal width. Wider shoes are perfect for people with swollen feet, but not for rheumatoid toes. When I walk it is like walking on pebbles, so I need very thick, cushioned soles, but not floppy ones as they don’t support enough. It is hard even to buy a pair of supportive slippers. I also have a particular problem, in that my right foot has been operated on for hammer toes and is therefore a different shape from my left. While this made my foot straighter it didn’t actually stop the pain! Thank you to all of the team who did this research; I look forward to one day being able to buy elegant, but comfortable shoes. Sally Smith, Calne, Wiltshire Don’t slouch – sit straight! For all the current and future treatments for arthritic problems, there are still some very simple rules we arthritics should be observing from the outset. The first two are personally relevant: • However good the armchair, slouching will, over time, result in a curved spine and damaged discs…you should see my MRI. • Had I religiously carried out the exercises for good hand structure I would not now have ‘fly away’ fingers. I do wish there as an equally efficacious alternative to diclofenac, which creates real stomach problems for me and has ruined my appetite. William Elliott, Deal, Kent My osteoarthritic knees have improved thanks to pilates I have had osteoarthritis in both knees for about 12 years. My greatest help has been a well-qualified pilates instructor. After a year attending weekly classes my knees have improved so much, my walking is better, is less painful, feels good, and I’m generally more mobile. Perhaps this letter might prompt others to think about this route. Janet Breadmore, Almondbury, Bristol, North Somerset 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 www.arthritisresearchuk.org www.arthritisresearchuk.org THE INGENIOUS NON-ELECTRIC ORIGINAL Totally different from any other Sweeper you have ever used! SWEEPS UP DIRT, PET HAIRS, THREADS, GRASS, CRUMBS, ASHES, EVEN GLASS...WITH EASE! No ordinary sweeper can compete with the super-light Hoky. The world’s undisputed No.1 floor cleaner. Its unique cleaning features have brought a new dimension to carpet and floor cleaning in hospitals, restaurants, airlines, offices, cars, caravans and homes everywhere. T LAS CE N A CH BUY TO THIS AT ICE PR BUY 2 SAVE £10 IT CLEANS DIFFERENTLY The Hoky cleans deep down clean. 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What do you hope or expect to achieve as a result of your Arthritis Research UK funding? The charity is currently funding a number of my projects. The main one, the TICOPA (tight control in psoriatic arthritis) study is the first study to examine different ways of treating psoriatic arthritis with drug therapy. A few years ago a similar study in rheumatoid arthritis found that a more aggressive approach to treatment gave better results and it is hoped we can show the same in psoriatic arthritis. We don’t have much in the way of evidence for the benefit of conventional drugs (such as methotrexate and sulfasalazine) in this disease but the TICOPA study seems to be getting good results with these drugs alone, without having recourse to anti-TNF drugs. It should be completed this year. What do you do in a typical day? I am out of bed at 5.15am with exercise in mind! I run or cycle to and from work. How long has Arthritis Research This helps clear my head after a hard day at the office. A clinical day will consist of UK been funding you? outpatients and seeing patients on the I have been supported by the charity, ward, and lots and lots of paperwork. I with grants and other support, for the last may argue with an administrator or two, 25 years. My first Arthritis Research UK discuss cases with colleagues and grant came from the then Arthritis harangue the junior staff. On research Research Campaign as a clinical research days there are always plenty of meetings fellowship in 1985. Since then my grants and the research clinic. If I can I will fit a have covered both clinical and biorun in at lunchtime, but this is becoming engineering studies in psoriatic arthritis a rare event. It used to be said that and foot disorders. In the last few years I working with me “seriously improved the have also received funding for educahealth” as successive PhD students were tional projects which have supported the taken out for exercise at lunchtimes. diploma in musculoskeletal medicine and What is your greatest research rheumatology for GPs that we organise with Bradford University. achievement? rheumatology in Leeds. His main research interests were bioengineering and psoriatic arthritis and he passed his enthusiasm on to me. I worked briefly for him in the early 1970s and then returned to his department in 1985 when general practice lost its allure. Do you ever think about how your work can help people with arthritis? Well we now have patient representatives who keep us focussed on this. What would you do if you weren’t a clinician/researcher? I would have liked to have made a profession out of sport but am/was no-where near good enough for that. The idea of writing appeals to me: they say there is a good book in everyone. My mother-in-law made a successful career as a novelist after retiring so there is still hope for me. The trouble is I don’t want to retire. About Philip The garage is full of woodworking equipment just waiting to be used. Alongside this equipment are about eight bicycles, also waiting for me to get on them. The two don’t mix, in a mechanical maintenance sort of way, so both lay idle. If my body lets me I get out on the hills with studded shoes and scant clothing. Opera, especially Wagner, catches my mood. Philip Helliwell is a senior lecturer •inDrrheumatology at Chapel Allerton Hospital in Leeds and a consultant rheumatologist at St Luke’s Hospital in Bradford. He is also Arthritis Today’s resident doctor for many years. definitely have rheumatoid arthritis, but who look as though they may develop it; we know that some of them will and What does your work involve? some of them won’t, and we give their I am interested in looking for illness the name “undifferentiated “biomarkers” – measurable indicators of arthritis.” As a result of the PhD project biological processes which might help that Arthritis Research UK funded, we predict the development of rheumatoid believe we may have identified a “gene arthritis – in patients attending an early signature” in the blood of undifferentiated arthritis clinic. In so doing, biomarkers may also teach us something new about arthritis patients which may help us to what’s going wrong with those biological predict who will get rheumatoid arthritis. processes in these individuals. Together with my PhD supervisor, Professor John Isaacs, I set about this task by focussing on a particular type of blood cell called the CD4+ T cell, which seems to be of crucial importance in this condition. In particular, I looked at the pattern by which genes were either “switched on” or “switched off” in these cells amongst patients attending our early arthritis clinic in Newcastle, seeking a “gene signature” that predicted a diagnosis of rheumatoid arthritis. Having identified an interesting set of genes in this regard, I’ve become interested in the biological pathways that they seem to indicate may be disrupted in early rheumatoid arthritis, and whether or not treatments that target such pathways might work better in those patients in whom the biomarker is most prominent. Patients and their doctors know that there is a bewildering array of different drugs available for the treatment of the condition these days. We hope that biomarkers will one day allow us not only to diagnose the condition sooner, but also to pinpoint the particular drug that is likely to work best for a particular patient. How long has Arthritis Research UK been funding you? Arthritis Research UK awarded me funding for a three year clinical research fellowship project in 2007, and I’m pleased to report that I have just been awarded my PhD! As a springboard to a career in rheumatology research, this fellowship has been priceless, and I will always remain grateful to Arthritis Research UK for supporting me and my project. What’s the most important thing you have found out in the past 12 months? And why? From a bioengineering point of view, my work on joint stiffness (which took five years and gave me both an MD and a PhD) was my best work but I find it is That’s a hard one. Patients add a whole largely forgotten now. However, being new dimension to research and as a able to measure the very symptom the colleague said at a meeting in Borneo last patient complained of was a revelation to year: “you’re bonkers if you don’t involve me, and them. It’s a pity we couldn’t do your patients in your research.” The the same for pain. From a clinical point of outlook of consumers is not surprisingly view, setting up the large international very different from medics and it is useful study to develop new criteria for psoriatic to see the approach to research from arthritis was a landmark in this. their point of view. Certainly, patients’ Why did you choose to do this priorities are very different from the work? doctors’. Apart from that, I would really liked to have said that I had found a cure I was mentored by Verna Wright, formerly for arthritis but that will have to wait until Arthritis Research Campaign professor of 30 Arthritis Today Dr Arthur Pratt What’s the most important thing you have found out in the past 12 months? And why? What do you hope or expect to achieve as a result of your Arthritis Research UK funding? arthritis, and by the variability with which different patients’ disease subsequently responds to different drugs. The opportunity to ask – and, hopefully, find answers to – important questions based on the problems we face in our clinics is what continues to draw me into clinical science. Do you ever think about how your work can help people with arthritis? Anyone involved with arthritis research will tell you that it’s not easy, and there are naturally times when one’s motivation My research career is at a very early stage, wanes. At those times, thinking about the and, first and foremost, I am very keen to long-term goal of one’s work – which confirm our findings – make sure that must always involve improving people’s they did not simply occur by chance. The lives – can be the only thing that keeps “vision” which arises from our work, and one going. which I share with many others, is that one day it will be possible to use What would you do if you weren’t relatively simple tests early on in the course of people’s arthritis, to diagnose a clinician/researcher? them more effectively and treat them and their disease in a more “personalised” My first ambition (aged about five) was to be a gardener – and these days my way. garden has reason to regret my What do you do in a typical day? subsequent career choices. Having completed my Arthritis Research UK-funded PhD, I am now continuing my clinical training as a specialist registrar in rheumatology. Currently, this involves seeing patients alongside a team of consultants and nurses at County Durham and Darlington Foundation Trust. I thoroughly enjoy my work, and feel privileged to be able to spend time with, and learn from, the wonderful people of north-east England, whilst pursuing my academic interest in early arthritis. About Arthur We have a four-year-old son and a two-year-old daughter, which about covers it, I think! Dr Arthur Pratt is a specialist •registrar in rheumatology at County Durham and Darlington Foundation Trust. What is your greatest research achievement? During my recent studies I have, with the help of many people, learned a range of new clinical, laboratory and analytical skills. It’s been a bumpy ride at times, but being awarded my PhD was a very satisfying experience. Why did you choose to do this work? As a trainee rheumatologist, I was struck There is a group of patients that we see in by the challenge doctors continue to face the early arthritis clinic who don’t yet in confidently diagnosing rheumatoid www.arthritisresearchuk.org www.arthritisresearchuk.org Arthritis Today 31 Fundraising news Fundraising news A lean, mean, admin machine The sun shines on the London Marathon That’s the supporter services team. Supporter services manager Louisa Gunnee explains how we deal with your donations. The vital role of the team is to administer all daily income. A few examples of this are: Direct marketing • Mailings. We process the donations received from various mailing campaigns, logging them onto our database and sending out an acknowledgement to our donors. We’re a team: Laura Scarborough, Louisa Gunnee, Joanne Unwin & Jennifer Unwin flowers. These types of donations are processed in some depth. Sponsorship We process the sponsor money, ensuring that gift aided donations are claimed correctly, and log the details onto the database. Gift Aid is an easy way for charities to increase the value of their gift of money from UK taxpayers by claiming back the basic tax rate paid by the donor. • Trading. Our team administers the donations that are generated from the Special occasion donations Christmas catalogue. These are donations from people who are celebrating an event such as an • Raffles. We ensure all the ticket purchases and donations are recorded anniversary, wedding or birthday, and onto our database. who asked for donations to charity in • Telemarketing. We administer the direct debits. lieu of gifts. This type of donating is becoming extremely popular. In memory Direct debits This is an increasingly popular way of donating to charity in which the relatives of someone who has died request donations to charity instead of All the donation and account details are captured on our database, and pushed through our automated direct debit process to the donor’s bank. 32 Arthritis Today Arthritis Research UK was the proud beneficiary of a special concert held at the Barbican in London in April. The City of London Choir performed with the Royal Philharmonic Orchestra, conducted by Hilary Davan Wetton in an all-Mendelssohn programme. As 35,000 runners gathered at the Blackheath start line of the 30th Virgin London Marathon, amongst the elite athletes, runners in fancy dress and Guinness World record hopefuls were nearly 70 Arthritis Research UK competitors nervously waiting to get going. The supporter services team is the voice of the charity, working as the contact point to our donors. We’re the interface between people outside the charity that raise money for us and make donations, and the fundraising and finance teams here at Arthritis Research UK. We’re only a small team of four but we are focused on delivering the best supporter care we can to encourage our donors to continue their generous support. It’s very important for us to acknowledge our supporters promptly, giving them assurance that their donation reached us. It is our responsibility to enhance the experience of being a donor to Arthritis Research UK, our department try our utmost to offer the most appropriate, friendly, efficient and effective customer service. Barbican concert thanks What we raised in 2010-11 Voluntary income: Legacies: £19,525,000 Donations: £2,690,000 (plus £645,000 restricted income) Activities for generating funds: Fundraising events £914,000 Charity shops: £3,102,000 Mail order and other trading: £402,000 Investment income: £1,964,000 Intellectual property income: £9,869,000 Incoming resources from charitable activities: £146,000 Other incoming resources: £3,000 Total income: £39,265,000 Whilst spectators and supporters enjoyed the glorious sunshine and warm weather on the day, for the runners it meant an Arthritis Research UK chief executive Liam extra effort. O’Toole cheered on the runners at the 22 mile point and was the first one to Michelle Harrison, information content congratulate them at the post-race manager at Arthritis Research UK, was reception at the QE2 conference centre: one of the daring ones who took part in the gruelling 26.2 miles race and finished “Once again congratulations to our the course in the commendable time of runners who completed the Virgin four hours and 36 minutes. London Marathon. Their fundraising Michelle said: “The heat on the day made efforts have been fantastic and every the challenge that little bit harder but the penny raised counts towards the research into the causes, treatment and cure of crowd support and all the generous arthritis,” he said. Our runners raised donations carried me through the finish more than £95,000 from their efforts; a line. I have never done any running fantastic achievement. before and the marathon was a real challenge but I loved the experience.” We would also like to extend a special There was definitely plenty of sweat and thank you to the British College of Osteopathic Medicine who provided a quite a few tears too. Runner Nick Pond said: “From mile 20 I knew I was going to massage to our runners. finish, I didn’t look at my watch, didn’t worry about time and just soaked up the atmosphere and encouragement from thousands upon thousands of people. I must have run the last three miles mostly in tears, not of pain, but simply pride and pleasure. Pride that I was delivering on a commitment to Emma, my arthritisaffected daughter, and all my sponsors.” • Michelle Harrison with family and friends after completing her first-ever marathon www.arthritisresearchuk.org We would like to extend our special thanks to the City of London Choir for nominating Arthritis Research UK; in particular Tonya Vincent, Hilary Davan Wetton and Jenny Robinson. Pictured from left to right are Sarah Greene, chief executive Dr Liam O’Toole and director of fundraising Louise Holland. If you have been bitten by the running bug why not contact Lyndsey on the events hotline 01246 541108 or email [email protected] for further information on the events you can partake in. For more inspiration and to see how our runners got on, check out the marathon video at www.arthritisresearchuk.org Arthritis Research UK’s annual report and financial statements 2010-2011 can be accessed on our website at www.arthritisresearchuk.org www.arthritisresearchuk.org It was a marvellous evening and a fantastic opportunity for the charity to engage with many of our supporters during a special preconcert reception. Charity envoy Phil Packer and TV and radio presenter Sarah Greene (who made a moving appeal on behalf of the charity) were among our guests. Members of our Central London committee, from left to right: Alison Allvey, Lady Thomas, Elizabeth Dawson and Pippa Diggle. Arthritis Today 33 ADVERTISEMENT Arthritis takes away the lives of people like Alice You can help give it back again As a young girl Alice Peterson lived for tennis, and by her 18th birthday she was ranked number six in the country. But just a few months later she was diagnosed with rheumatoid arthritis, which meant she would never be able to play tennis again. Conventional therapies had little effect on Alice’s condition, and she spent the next few years battling with the disease as it took an unrelenting grip on her body. Writing about her experiences helped Alice make sense of it all, and she went on to publish a book that has brought hope to many other arthritis sufferers. Alice was finally able to relieve the pain through anti-TNF therapy, which was developed by scientists funded by Arthritis Research UK. Sadly, for 30 per cent of inflammatory arthritis patients, antiTNF and other biologic therapies don’t work. We are researching into new treatments and earlier diagnosis to help even more people live a life free from the pain of arthritis. But we urgently need your help to make sure the research continues. Enjoy bath time independence again Your donation today will help find new treatments to transform more lives. Please give whatever you can by filling in the form or calling our donation line on 0300 790 0444. Yes, I want to help develop new and better treatments to reduce the pain Title (Mr/Mrs/Ms/Other) First name If you have trouble getting in and out of the bath and the thought of bathing has become a daunting prospect, discovering that there is a simple, affordable solution that will fit your own bath will already make your day. Surname Address Arthritis Research UK is a registered charity in England and Wales no. 207711, Scotland no. SC041156. Postcode I would like to donate: (please tick relevant box) £10 £15 £25 And that solution is a Willowbrook Aqualift. It’s the most convenient and cost effective way to enjoy full depth bathing without having to change your bathroom. £30 Other £ Or please debit my: Maestro / MasterCard / Visa / Amex / CAF Card (please delete as appropriate) (Maestro only) Valid from: M M / Expiry date: Y Y M M / Issue No: Y Y Keep me updated Make your gift worth even more We’d 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. Gift Aid allows Arthritis Research UK to reclaim the tax that you have already paid on your donations – at no extra cost to you. It means your donation could be worth 25% more to us. To sign up just tick the box below and check that your name and address details are correct. Email Home Tel 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. AT0711 • No need to change your existing bathroom • Fully guaranteed And is easy to use • Lowers and raises you at the touch of a button • Retracts to allow normal bath use by others Just sit on the Aqualift and at the touch of a button you’ll be smoothly and gently lowered into the bath. For a brochure or a free home trial The simple solution that fits your own bath • Free installation in less than 2 hours by our trained fitters A British company established for over 15 years I am not a taxpayer. Aqualift • No building or plumbing alterations required With a fitting time of less than 2 hours you’ll be back bathing in no time. And it couldn’t be simpler. Yes, I am a UK taxpayer and 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. Please fill in this form and return it to: FREEPOST SF671, Arthritis Research UK, PO Box 177, Chesterfield S41 7BR Or make a gift online at www.arthritisresearchuk.org/donate or call our donation line on 0300 790 0444 Discover the Willowbrook Aqualift for yourself with a free home trial and rediscover the pleasure of a relaxing bath. There’s no need for expensive alterations and you won’t lose value on your home from removing your bath. You won’t even need builders or plumbers as our trained fitters will fit the Aqualift completely free of charge. I enclose my cheque/postal order/CAF voucher made payable to: Arthritis Research UK (we can only accept donations in UK sterling) Card number: Aqualift is a quality system designed to last and shouldn’t be confused with quick fix solutions and allows you to regain bath time independence at a fraction of the cost of walk-in baths. Call 0800 028 2802 • The perfect solution at a fraction of the price of walk-in baths AQUALIFT AQUALIFT ARTHI/12/07/11/q FREE Delivery UK mainland are sorry only part of our huge range of chairs can be shown here. Chairs with higher seats and back support, for easier sitting and rising Back-Care Chairs from £199 available with higher seats FREE 7-14 DAY DELIVERY on many models FREE 48-HOUR DELIVERY ON BUCKINGHAM 18in. IN BOUCLE COCOA Recliner Chairs from £299 wonderfully comfortable SIT! SNOOZE! RELAX! you to relax. Reclining Swivels Drop-Arm Sofas from £499 Sofa, chaise longue or bed – from £299 ALL IN ONE! plus Ideal guest bed. 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