Silver Jubilee 199 0-2015

LUPUS UK - A Personal Retrospective by David Hopkins When I took on material' and my thanks go to all of them. period until she retired as Editor in 2002, Cheryl was to make this into the publication the position of Years of misery followed for Cheryl, we now know as 'News & Views,' which Secretary of including many months in hospital, though reaches thousands. Another remarkable LUPUS UK I was the arrival of son Daniel was a huge boon. achievement in her personal lupus story! handed a large Then, in 1976, Cheryl met Graham Hughes and heavy file; and, as she put it, 'a new chapter in my life In 1983, Cheryl had the pleasure of meeting this contained the began’. This was later to include a two- Diana, Princess of Wales, when the Princess minutes of all the and-a-half pound baby boy, Jonathan; he visited Dr Hughes and his team at meetings of eventually grew to be six feet three! But I Hammersmith Hospital. Princess Diana LUPUS UK. On digress. During her illness, Cheryl began to chatted informally to staff and then to looking through, I saw that the first wonder if there were others with this condition with whom she could communicate. meeting was held in late 1990 – So early in 1978 she contacted BBC Radio meaning that this year of 2015 marks London; this led to an interview and her our Silver Jubilee. The Trustees agreed appeal for others with lupus to contact her. that this milestone should not go That's where the story of 'lupus support' unmarked. It fitted with plans to review really begins, for little could Cheryl have our 'corporate' image and the realised what she had started. Letters and constitution. So 2015 marks an end to other contacts were received and Cheryl one chapter in our history and the realised she was not alone. 'I felt like beginning of the next phase of Robinson Crusoe finding Man Friday' was our growth. how she described it. But let's not jump too far ahead. In fact, I Gradually, Cheryl began to build up a feel it is important to look back and see group of lupus patients and supporters and what has brought us to the point at which a link was made with The British Rheumatism we now find ourselves. & Arthritis Association (now 'Arthritis Care'). On 1st December 1978, the inaugural In November 1990, LUPUS UK opened the meeting of the British SLE Aid Group doors of its National Office for the very (BSLEAG) was held in Langham Place, patients. The visit received extensive media first time. This was clearly an event of London, where the guest lecturer was Dr coverage, raising awareness about lupus great importance for all involved at the Hughes, and the Joint Presidents were amongst the general public. Cheryl's time and in subsequent years but it is Cheryl and Joyce Cross. In April 1979, the youngest son Jonathan was referred to in the important to realise that this was not first fundraising event, a Spring Fayre, media as a 'miracle baby' as Mum had something that just 'happened’. The creation raised £4,000 - quite a sum in those days! spent five years confined to a wheelchair. of the only national charitable organisation This was followed by a supper at the After presenting his bouquet, Jonathan also dedicated specifically to supporting lupus Westcliff Marina (financially successful but gave the Princess his bottle and teddy bear! patients was a development of something which attracted too many people!) and then Cheryl apologised to Princess Diana for the that had begun a dozen years earlier, a dinner/dance in April 1980. In 1981 the 'boisterous' behaviour; her reported when one woman, having been diagnosed Group became a registered charity. response was: 'He certainly looks a bundle with SLE, felt she needed to meet with, seek of fun. I understand perfectly – Prince support from and offer support to others in Some years later, it was felt that the next William is a mini-tornado!' A comment we a similar situation. step (and it was quite a big step!) was to may remember at a coronation of the future! form a charity that would be solely for Imagine the situation - it was 1971 and a lupus patients and their families, rather young woman had just enjoyed one of the than be linked with a charity with a much most important and happiest days of her broader base. After a series of meetings, life, her wedding, to Martin. On her LUPUS UK came into being in November 'honeymoon in the sun’, the symptoms she 1990 and in December 1995 became a had had for some time became far more registered charity. pronounced. Not the start to a 'new life' any of us would want. The young woman On Friday 5th April 1991, there was an was Cheryl Marcus and her father was GP official 'launch' of LUPUS UK with a Benjamin Green. His knowledge le d to her reception at the Royal Court Hotel, Sloane diagnosis (initially of discoid lupus, later of Square, London, hosted by the first systemic lupus) and the beginning of a long Chairman, Dr Graham Hughes, at the story of struggle and of achievement, one commencement of Lupus Awareness that is worthy of far more space than this Week 1991. article can offer. So I shall pick up on a From the outset, few points, based on correspondence, Cheryl had articles and photographs that Cheryl has produced a kindly shared with me. For these I am 'newsletter.' This immensely grateful, as I am for her time, started in 1979 help and patience. Reading through the as a simple material has given me hours of fascinated duplicated sheet, Nora Vanday fulfilled her dream to meet interest. This applies, too, to Professor sent out to 20 Diana. Diana unexpectedly visited the ward Graham Hughes, who shared with me some lupus meeting other lupus patients. of his very valuable time and his memories. penfriends. In 1994, Cheryl was nominated to attend Others have also added to my 'source Over the the Savoy Hotel as one of 500 women

1 recognised that year for their work for described as Europe's first 'dedicated' lupus collected went to LUPUS UK directly or was charity, the economy or the country. In clinic. This was opened by singing star part of local funds. Dr Hughes was elected 2005 she and Martin were invited to Elaine Paige, herself a lupus patient. Chairman and the meeting unanimously 'Number 10' by Cherie Booth, wife of then agreed that Cheryl Marcus be made a Life In 1983 Dr Hughes described 'antiphos - Member of LUPUS UK. pholipid syndrome', (APS) often called 'Hughes Syndrome'. (Not many people have When the Executive a health condition named after them!) met, in January, Many of our members will be only too 1991, it was aware of this condition and its effects. In confirmed that those 1991 Dr Hughes became Editor of a new working as volunteers journal, which published its first issue in at Head Office were November of that year. 'LUPUS' is the only Eric Howard (pictured) fully peer-reviewed international journal and three part-time devoted exclusively to lupus (and related staff, including Prime Minister Tony Blair, and in 2009 she disease) research. Professor Hughes Geraldine Leonard. again went to Number 10 for the LUPUS remains Editor. He is also on the board of Several others UK reception hosted by Sarah Brown. many journals, a member of the American worked from home. A constitution was Lupus Hall of Fame and Doctor Honoris of under consideration and officers were the Universities of Marseilles and Barcelona elected - Vice-Chairman: Ronnie Gourley, and Master of the American College of Treasurer: Martin Marcus, Secretary: Rheumatology. He and his team have many Doreen Milner. A programme for 'Lupus awards and honours. He currently heads Awareness Week' was considered for 6th- the private London Lupus Centre. 13th April. It was suggested that the AGM alternate on a three-yearly basis between Dr Hughes encouraged Cheryl to link with London, Birmingham and Glasgow/ other lupus patients and actively supported Edinburgh. (Later, in 1994, it was decided the establishment and growth of the to move the AGM around the country. BSLEAG. When this moved on to become LUPUS UK, Dr Hughes chaired the The next meeting was held in September, inaugural meeting of the National when there were representatives from: Committee of LUPUS UK at the Drury Lane Avon, Central England, East Midlands, Moat House on Saturday 10th November Essex, Fife/Lothian/Borders, Greater 1990. This is where the LUPUS UK story Manchester, Hampshire, Herts & Beds, Kent, truly begins. Merseyside, North East, Northern Ireland, On that afternoon, a group of more than South Wales, Strathclyde, South thirty came together. Amongst the group London/Surrey, West Midlands and A key figure in the pre-LUPUS UK history were Cheryl and Martin Marcus, Ronnie Yorkshire. This was the first 'representa - and through its development is Doctor, now Gourley and Peter Norton. There were tional' meeting of LUPUS UK. Gerald Ansell Professor, Graham Hughes. Professor apologies from wife Yvonne. At this became Secretary. A 'Young Group,' for 16 Hughes is a very important figure in the November meeting it was agreed that a to 30s, had been started in the March. Eric study and treatment of lupus. After training new unified Society be formed which Howard was given the courtesy title of in London and New York, in 1971 he set up combined research and welfare. It was Director. In April, 1992, the Third made clear that the Trustees of BSLEAG (a International SLE Conference was to be registered charity) had no desire to held, in the UK, in London. The LUPUS UK interfere with the new body or with the AGM would be held during the Conference regional groups, of which there were now on one of the days. quite a few. Through his company, Martin In April, 1992, Ronnie Gourley was elected Marcus offered the use of a free office Chairperson, Gerald Ansell and Martin and telephone in Eastern Road, Romford. Marcus were re-elected as Secretary and (Our current office is just along the same Treasurer respectively and a new Vice- road!) BSLEAG member Eric Howard had Chair was elected: Yvonne Norton; she stills recently retired and offered to run the holds this position. Eric left the role of office. The staff would all be volunteers. Director and Brian Hanner, who was a lupus clinic and lupus pregnancy clinic at Initially the Trustees would provide initially engaged as a fundraiser, took on Hammersmith Hospital, London. In 1985 he £10,000 to run the organisation for the the role. The small staff was now paid, with moved his team to St Thomas' where he first year but after that the costs would be support supplied by volunteers. established the Louise Coote Lupus Unit, met by LUPUS UK through its own activities and those of the groups. Up to this time, all money raised had gone to research. Now running costs of the organisation and 'welfare' were factors. It was at this meeting that the name 'LUPUS UK' was adopted. Up to 31st October 1990, all money held had belonged to Arthritis Care (later, Arthritis Care said that groups could retain their funds); from November, any money

2 The next milestone was when LUPUS UK introduced an Early Day Motion in efforts did a great deal to raise the profile became a registered charity. This Parliament commending LUPUS UK for its of lupus at the highest level, for which happened on 29th December 1995. The work and calling on the government to LUPUS UK remains extremely grateful. assets of BSLEAG were officially raise awareness of lupus and invest in At the centre of LUPUS UK's work is 'Romford,' transferred to the new charity. By 1996 research into effective treatment of the home of our 'National Office.' Mention has there were three full-time staff, including disease. 322 MPs signed the EDM – half then Director Brian Hanner and Geraldine the House! Leonard, with three part-time staff, In 2003, there were including Janine Hirsch and Mary Phillips. celebrations to mark Geraldine, Janine and Mary remain valued twenty-five years of members of staff. 'support for people In 1997 the first LUPUS UK video was with lupus.' At this produced, in conjunction with Dr David time Ronnie d'Cruz; Janet Dean was elected an MP and Gourley and in November, 1999, she held a reception in Yvonne Norton the House to launch the All-Party were still in Parliamentary Group for Lupus. Janet's place as mother had had lupus, as had her husband, Chairman and already been made of staff in the past so Alan, who had died in 1994. These events Vice Chair, Jack Hirst had let's look at the staff we have now. become Secretary and Tony Rance was gave her a personal and passionate Janine Hirsch joined the staff in 1994, interest in promoting awareness of the Treasurer. There were thirty-four regional Mary Phillips in 1996 and Christine condition. (Unfortunately we have not been groups on the list, with some 7,500 Watkins in 1997. In 2000 Chris Maker able to see the re-establishment of the members. Group patrons included well- came on to the scene, initially as Deputy APPG after Janet left Parliament in 2010 - known personalities Max Bygraves (Dorset), Director and then Director when Brian but we keep hoping!) Faith Brown (Herts & Beds), Ken Dodd (Merseyside - where else?), Su Pollard and Hanner retired in 2004. So there is a In 2000, the book A GP Guide to Liza Goddard (Norfolk), Gareth Hunt wealth of experience amongst this group to Diagnosis (compiled by Yvonne Norton) was (South London) and Sir Patrick Moore create a strong foundation for all that we launched at a reception at the House, (Western). There were several MPs - John do. In 2011 Paul Howard joined the team; attended by MPs, peers, members of the Gummer, David Jamieson, Liz Blackman he has helped move us into the IT and medical profession, representatives of and Joan Ryan. social media age. Most recent member of regional groups and other guests. the team is Hayley Winter. The word 'team' is important, because not only do all our staff have their 'specialist skills,' they all show that you can be a 'Jack (and Jill!) of all trades' and be a master of some. They are prepared to 'muck in' and do whatever happens to be needed at the time. There is one name to be added to the list, that of Geraldine Leonard. November marks twenty-five years of service by Geraldine to LUPUS UK. She is one of a few people who were involved from Day Subsequently LUPUS Actor Norman Bowler at the Reception with One and who remain active in the organi - UK sent a copy to Janet Dean and Prof. Graham Hughes sation. You may know that Geraldine has every GP practice decided that at the end of 2015 she is in the country – a In October 2003 the second reception at going to take early retirement and leave lot of work for our the House of Commons was held (the first LUPUS UK. Of course, it is true that no-one small staff! (In was in 2000) with representatives from is irreplaceable but when Geraldine leaves 2009, the revised groups joining MPs, peers and others. In we will lose a wealth of knowledge, not just version, Lupus – Diagnosis and 2003 and 2004, the Retief Goosen’s Golf of the operations of LUPUS UK but of Treatment - compiled and edited by Challenge raised many thousands of people, inside and outside the charity, with Yvonne Norton (now MBE!) - was published. pounds at golf clubs across the country and, of course, awareness. In 2003 the whom Geraldine has contacts and of whom In 2001 the Director reported that for the LUPUS UK Light Sensitivity Support Group she knows so much. She will be missed but third successive year, income had topped was set up, with Brenda Ryder as co- we wish her well with her new 'job' as full- £500,000 and grants awarded were ordinator. Janet Dean accepted an time grandmother and trust that she will higher than ever. Also that year, in March, invitation to become a National Patron. Her get plenty of opportunity to share quality LUPUS UK took a leading role in managing a successful 4th International Patients Conference in Barcelona. In October the official website was launched. In 2002, 'Lupus Awareness' became a Month and was moved to October, in line, at the time, with the USA, Canada and Australia. Also in 2002, Vice-Chair Yvonne Norton presented Janet Dean with a LUPUS UK Certificate of Appreciation, whilst Janet l-r Paul, Mary, Geraldine, Chris, Christine, Janine and Hayley

3 time and experience with those dear to her. Jane, too, we send our thanks and best wishes for her future health and happiness Though we know that ours is a small charity in all she does. Jane will be succeeded as it is not unusual for surprise to be Chair by an existing Trustee, Kevin Weston expressed when people learn just how few from North Wales. Kevin has a wealth of paid staff we have. This speaks volumes for experience in business and the voluntary their dedication and hard work. Many of us sector and his expertise will help LUPUS UK feel that LUPUS UK 'punches above its over the next three years as it considers its weight' and that much of this is due to the future direction, its policies and its organi - quality of our staff. So to all of them, an sation at all levels. enormous 'thank you'. Not many may still be in place when the Golden Jubilee comes Over the years, LUPUS UK has been well AGM followed by an 'Information Day.' around but we know that their commitment served by its Trustees. The Director and the With proxy voting, members can register will continue well into the future. staff run the 'organisation' and the day-to- their views on motions etc. However, the day activities but it is the responsibility of Two names that keep appearing in the AGM can be more than just a vote-casting LUPUS UK story are Yvonne and Peter exercise. It is the chance to comment on Norton. Yvonne's role at the forefront of what has been done and share your vision the charity is clear for all to see. She works of the future. It is also the chance to meet tirelessly for her regional group as well as trustees and staff (and vice versa) and nationally and internationally. We marvel 'meet and greet' other members. at her energy as she travels all over Having two Information Days a year (one Europe, representing LUPUS UK and striving linked with the AGM) spread across the to take the best of what we in the UK can country, makes more financial sense. offer to groups who hold LUPUS UK in high Hopefully this will bring together more esteem. Some may not realise the depth of people in an area than in the past and Peter's role. Whilst he is there to support make people aware of the work of LUPUS Yvonne (not just push her wheelchair!), the UK. Since adopting this new method we time, effort and expertise that he supplies have held these 'Days' in London, Devon, is outstanding. Together these two make a and Birmingham, with Northern Ireland and Scotland next on the list. Be sure your area gets included! The Silver Jubilee will be celebrated by numerous groups, with a variety of events, including dinners and dances (in at least Jane Dunnage, Yvonne Norton MBE, David one famous football stadium and a hotel Hopkins, Tina Stemp, Jan Roberts, Karen Newby, called a castle!), lunches, talks and more. Kevin Weston and Janet McComiskey Well done to groups able to take on board great team, a credit to themselves and to the Trustees to decide on the overall one or more celebratory activity. LUPUS UK. You may be aware that at the direction of the charity. The Trustees also LUPUS UK (that means us!) can take great 2015 AGM Yvonne was made Honorary make the decisions on grant applications, pride in what has been achieved over the Life Vice-President of LUPUS UK and Peter carefully weighing up each one and being last twenty-five years. We fund small and an Honorary Life Member, both awards guided by the advice of the Specialist specialist research projects which may lead extremely well deserved. The importance Medical Panel. Recent events have made us to advances that will attract other funding of their work in and for LUPUS UK cannot all aware that things can go wrong with for larger-scale research. be overemphasised. charities. However, members can be assured that our Treasurer and Trustees In 1992, LUPUS UK agreed grants totalling As 2015 draws to take a considered long-term view and just over £80,000. From 1992 to 2000, a close, so does a always err on the side of caution. LUPUS grants agreed totalled £1.7 million and period of nine UK 'reserves' are maintained at a level from 2001 to 2010 (inclusive) this figure years (three where we can fulfil all agreed grant was over £3.26 million. In the four years electoral periods) applications and have enough 'in the kitty' 2011 to 2014, we agreed £1.56 million. during which we to cover a full year's running costs. With the So from LUPUS UK Day One to the end of have been led by Director's financial background you can be 2014, over six and a half million pounds Jane Dunnage as sure that 'prudence' will always be present (£6.5 million!) has been committed in our Chair. Few at meetings! Our fund-raising policy is grants!! Our grants programme already, know just how ethical and transparent and beyond late in 2015, commits us to funding projects much time, effort reproach: no mail-shots, no telephone calls until the end of the decade and every year and commitment or e-mails, no pressure. The trustees we take on more projects and provide Jane has put into her role during those regularly and frequently monitor the more financial assistance. For the four years or how much sacrifice she has had to activities of the charity to uphold the years from 2011 to 2014 the average make to carry out the tasks and objectives highest standards. annual commitment has been £445,000, so she has set herself. Despite the severity of it is not unreasonable to expect to add her health problems Jane has represented Birmingham hosted the AGM in 1993, after another £2+ million by the end of the LUPUS UK, lupus patients and the cause of which we went to Renfrew, Shepperton, decade. advancing awareness of lupus with great Harrogate and Cardiff, moving around the diligence and fortitude, bringing awareness country until Chester hosted our final 'old Not bad for a small, specialist health of the condition and the charity to a wide style' AGM Day in 2013: a lovely city in charity that does not draw the publicity range of organisations and individuals. To which to end a tradition. We now have the given to many other charities and where

4 many members are far from healthy, rate of change is likely to escalate not and variety of mobile or able to fund-raise! I think that it diminish; if our charity is to survive and our the literature we is a record of which every member can be ambitions reach further success we cannot provide is immensely proud. A bit of mutual back- let the grass grow under our feet! This outstanding, our patting is very much in order! concept will need to be applied throughout 'Contacts' system LUPUS UK, through our Trustees, our staff is unique and the In recent years, great emphasis has been and our regional and local structure. In the concept of placed on funding specialist lupus nurses. next ten years we are likely to see changes 'Centres of Reactions indicate that where there are in charities and voluntary organisations we Excellence' such specialist lupus nurses they are of cannot imagine today. draws great advantage to lupus patients and admiration. patient welfare is considerably directly LUPUS UK will not sit back on its laurels enhanced. and just congratulate itself on what has Prof Ian Bruce (left) receiving the Centre of been achieved, as there is still much to do. Excellence plaque given to The Kellgren LUPUS UK's group of 'Contacts' has been of A major task is to raise awareness amongst Centre for Rheumatology Manchester great assistance to many people. We don't health professionals. I know that I still hear know how many have been in touch over Voluntary organisations throughout the 'horror stories' about the way in which lupus the years but can be certain that the help country face similar challenges, as demands patients, and possible patients, are treated and advice received has been of immense increase and there are fewer people by health professionals. Some of these still value. In expressing thanks to all those who prepared to give their time and energy to have the 'it's all in your mind attitude' and have taken on this task we need to add the help. Only our staff at Romford are paid. people, even today, get referred to psychi - names of Geraldine Leonard, Jan Roberts Trustees, local committees and co-ordinators atrists! Many cannot get a diagnosis. Whilst and Linda Rumbles for the training they and everyone who works to organise some people speak with great affection have prepared and presented in more events, raise funds or spread awareness – and appreciation of their GP or consultant recent years, drawing on their knowledge all are volunteers! Add to that the fact that (not often both!), many are left frustrated and skills to enhance the abilities of our nearly all have lupus themselves, often and confused. For me, one major issue is Contacts. This training will of necessity impacting very severely on their lives, and that so few health professionals tell lupus change as greater use is made of the the enormity of the challenge can be seen. patients, particularly those newly- internet and social media and less It is sometimes easy to say 'why doesn't diagnosed, that there is national and local emphasis placed on telephone calls. Times someone...' and suggest an idea or activity; support. Is that their fault or ours? So we and needs change and we move forward finding that 'someone' is far more difficult. have identified one challenge – to seek to with changes in practices. ensure that many more health professionals know about us and endeavour to get them to pass on information to those who might benefit! In this article I deliberately chose to write about those 'pre-LUPUS UK' days as I felt it important (as well as interesting) that our members have some knowledge of the history of 'lupus patient support' in the UK. As members get older and new members Cheryl Marcus surrounded by balloons at the come on board I would not want our 'past' National Patron Paul Moriarty helps the Sussex launch of Lupus Awareness Day in 1988 at to be overlooked or ever forgotten. Over Lupus Group volunteers with a bedpush to St Thomas’ Hospital the years we have established an organi - raise awareness and funds for the Group sation that is the envy of countries across 1990 doesn't seem that long ago but just the globe, showing a level of expertise and think of the enormous developments we professionalism unmatched even in larger have seen in these twenty-five years. The countries and organisations. The quality

Essex Group members and friends regularly helped mail News & Views from National Office in Romford Thousands of people have been part of the LUPUS UK story over the last twenty-five years; each one has her or his own special story. It would take volumes to record all that has been shared and achieved. A few individuals have been mentioned in this article but no-one is forgotten! The history Participants at a LUPUS UK Contacts’ Course of LUPUS UK is the sum total of the parts

5 played by everyone. No record of that will mean for their lives, how they will cope, have to start planning for the Golden history would be complete without acknowl - who can they talk to, who will understand Jubilee just yet but these are the moments edging all of you. how they feel, who will be there to give to plan for today, tomorrow, next month encouragement, experience, knowledge and next year, and to think how much If the past inspires you, then think what you and support. For twenty-five years LUPUS LUPUS UK has given to you and how much can do to inspire the future. Some of you UK has been there to be the 'who' able to you can give to LUPUS UK and lupus will be doing as much as you possibly can offer assistance and guidance. But patients in the days ahead. but there will be some who may be able to remember that LUPUS UK is not only its offer to do a little more so that the burden For lupus patients everywhere, known trustees or its small dedicated staff in is more widely spread. Ours is a self-help and unknown, diagnosed and Romford - it is every one of us, the group! In those very early days, Cheryl undiagnosed, current and future - long members. Marcus felt alone and sought to bring may the work continue. together those with similar problems. In As we remember the past with thanks for its Happy Silver Jubilee! many ways, little has changed. Across the inspiration, we consider the present and the country there are people being told that opportunities it presents so that we can David Hopkins they have lupus and wondering what that face the challenges of the future. You don't November 2015

6 Past & Present

Past contact Fiona Moore with National Patron Gwyneth Strong and Cheryl Marcus Sussex Group with Patron Paul Moriarty

Celebrating the 50th Edition of News & Views

An early National Council Meeting

Epic walk - Lands End to John O’Groats Ronnie Gourley retires

Martin and Cheryl Marcus with Rae Gourley Brian Hanner’s retirement gift from West Midlands Butterfly Ball Fife, Lothian and Borders Group

Centre of Excellence Award at Regular fundraisers, The Queen Elizabeth Hospital Birmingham Kent Patron John Sandon Stort Folk Music Club

Geraldine and Janine meet Lady A regular Lunch4lupus event hosted by Linda Streeter Lancashire Go The Extra Mile Event Carnarvon at Highclere Castle