Huge, massive, overwhelming were the words used by John Nicholson (director of the George House Trust Manchester) to describe the 12th World AIDS conference. There were 15,000 doctors, scientists, other researchers and activists from around the world and sessions ran from 6.OOam to 10.OOpm everyday.
John Nicholson was the first of three speakers at the Geneva feedback session organised by NAM at the George House in Manchester. He identified three main areas as being the principal themes of the conference: science, community and people living with HIV. There was a high level of scientific debate and it was interesting to note the strong presence of big drugs companies. He observed that every community had different needs and often the differences were huge. Mother to baby transmission was considered an important issue. He noted the Swiss Governments embarrassment over the deportation of an African illegal immigrant who was HIV+ Overall, John felt there were not enough people living with HIV on the platform. There were too many doctors and scientists but the practical everyday experiences of living with HIV were lacking.
Henry Grahame-Smith from NAM who chaired the meeting, introduced Dr Ed Wilkins, the next speaker, as one of the few people who attended all the sessions from 6.OOam to l0.OOpm each day. Dedication indeed! This devotion to duty became evident as Dr Wilkins recollected the issues which affected us most here and now in the UK. Those of you who were fortunate to hear Ed speak at the Medical Institute earlier this year in Stoke will be familiar with his ability to put across the essentials of important issues without getting bogged down in scientific detail. Dr Wilkins said that Protease Inhibitors were high on the agenda with Lypidostrophy being the main talking point. Despite the draw backs of redistribution of body fats, the possible onset of diabetes. Ed reassuringly said that HAART was still an effective therapy, even late starters can have a turn around.
Ed brought to our attention:
The conference paused twice to watch protests by Act-Up Paris in favour of providing antiviral drugs to people in the developing world and against deportations of people with HIV.
Henry Grahame-Smith rounded off the session by picking up on points not covered by the previous two speakers. He drew our attention to two side effects of PIs which had emerged: prominent veins and ingrowing toenails. There were many questions from the floor. The final questioner pointed out the gloomy news that in the USA there was a very high failure rate after two or three years on HAART, and asked if the situation was likely to be repeated here in Britain. Dr Ed optimistically responded with the observation that in his hospital this year he had seen fewer people with Opportunistic Infections and fewer deaths and he saw no reason why this trend should not continue.
NAM are noted for the quality of their work and Saturday afternoons Geneva feedback session was no exception. Together with GHT who hosted the occasion they are to be congratulated on a successful event from which a great number of people will benefit.
Staffordshire - Next meeting 6.00pm Thursday 3rd September to discuss aims & objectives - immediately prior to special event:(see below)
Internet and Computer Access by arrangement (Tuition available Tuesday evenings by arrangement with Bob.)
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It was a dull day in Stoke when we set off on our journey. The traffic on the motorway was heavy and began to snarl up as we approached Birmingham. However,once on the M5 the traffic lightened, so did the sky and passing through the beautiful Georgian city of Cheltenham Robert remarked that he had good feelings about the weekend. These premonitions proved to be right . We had a marvellous weekend with other people who were long term survivors like ourselves. What a wonderful mix of people which included a delightful Spanish mother to be. Both of us are grateful to Staffordshire Buddies for making this respite possible. The weekend definately convinced us of the value of such breaks; we derived benefits in many ways. We enjoyed peer support of the very best quality, we observed the many different ways people were coping with the disease. We were able to share and gain strength from our considerable combined repertoire of experience. From discussions which went late into the night we were also able to assess the value of such things as complementary therapies and management strategies in relation to HAART.
Glenfall Hall where the weekend took place is close to Cheltenham. It is an old country house which has been tastefully renovated with spacious reception rooms in which the structured and unstructured activities took place and where one was able to relax in comfortable splendour. The accommodation and the food were excellent. After a delicious and ample meal (you could have as much as you wanted) it was then possible to redress any excess by taking a stroll though the beautiful well kept landscaped gardens with views which extended to the Welsh Mountains.
Having struck up friendships, neither of us wanted to leave, but all good things.. .etc Both of us commented on the recharge of energy we had experienced and would recommend an LTSG weekend to anyone eligible. (LTSG - LongTerm Survivors Group)
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A gourmet meal to raise money - what a fantastic idea! The evening which included a raffle raised over five hundred pounds. Incredible! Congratulations to everyone who helped to make this evening such a magnificent success.
Photograph shows: Left to right - Neil Pepper (treasurer) Andrew Colclough (manager) being presented a giant cheque by Nina Beech and Ian Burton-Leg (directors of le Cafe deTynTyn)
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The clients of the Edward Myers Unit would appreciate a little light reading relief from my health promotion literature which is currently all there is to read in the waiting area. Donations of magazines: colour supplements, Marie Claire or even Cosmopolitan (for an update on the state of the orgasm!) for example would be welcome. Please leave in Buddies Office or alternatively give me a ring on 01782 799110 and I will collect. The unit offers treatment for those people who are living with drug and alcohol addiction.
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As a novice in the Society of St. Francis (SSF a mens religious order in the Anglican Church) during the early 1990s, our novice guardian used the symbol of a tree to illustrate his journey through life. I want to borrow that symbol combined with Andrews idea of a journey.
Much of my journey has been rooted within the Anglican Church and Christian spirituality. I went to church as a child with my mother, twice every Sunday, to sing in the choir (which gave me a love of classical and choral music) a practice that continued when I went to boarding school from age 11 to 18 simply because I loved to sing. Gradually, however, the words that were being spoken and their meaning became equally important. Belief took root and began to grow, which ended up in my going to Durham University to study Theology and History and exploring a vocation to the priesthood. I never became a priest, but my relationship with the church continued off and on until aged 39 I had a further bite at the religious cherry by joining SSF to try living the life of a modern-day Franciscan Friar. I was there for five years when I left to work full time with people living with HIV. Now, I dont go to church much at all, though exploring spirituality in different ways is still very important to me. First root.
Being a gay man, and given the attitude of the church to homosexuality, does beg the question why have any truck with religion? For me, it was very simple; my own experience and knowledge of God did not equate with what the Church said on this matter. I (still) believe that that body is wrong in how it interprets sexual experience, and homosexuality in particular. Not enough weight is given to the ongoing revealing of God, including through sex and sexuality, purely because it seems to contradict a collection of historical human texts that some human person or persons decided hundreds of years ago were representative of their understanding of God at that time. However, I dont believe in throwing the baby out with the bathwater; ignoring religion is not the answer. The concept of God, the spiritual journey undertaken in exploring that; the fellowship it brings, the experience of community, the revealing of God through each other; all this you can receive as part of that journey, which cannot be invalidated just because the Church ignores part of its calling. God is far more than the Church. Second root.
As a child, I was very insecure. Home was not always a safe place. My two brothers were five and ten years older than I, too old to want me around. My play was therefore solitary as I had no other local kids of my age to play with. By school (age five) I hadnt learnt how to mix, the others smelt my insecurity, and picked on me, which did my sense of self worth no end of good! Also, my elder brothers began to challenge Dads authority as they turned twelve. Dad responded violently. Mum intervened, but got beaten up as well. That pattern was an essential part of my years of growth experiencing physical violence, usually inflicted on others, with a dawning that that was my lot when I reached the age of twelve. Today, hed have been locked up. Not then. I passed my 11 plus aged 10; I was asked whether I wanted to go to the local grammar school or to a government boarding school that Norfolk ran. What would you have replied?! Third root.
Wymondham College was my rock from age 11 to 18. At the start I was overweight, hopeless at sport, good at schoolwork, a recipe bound to make me popular I dont think!! So, the bullying carried on but it was something I almost accepted as being part of the culture it wasnt just me being picked on, so I didnt personalise it; besides I could have stopped it if I had fought back, but by then I had a deeply rooted dread of physical violence and pain. I still have. Fourth root.
School taught me responsibility and self-discipline. It provided me with a bedrock of Protestant ethics, a clear sense of duty, a knowledge of right and wrong. It didnt stop me doing wrong, I just knew better when I was doing it I think its called guilt these days! It gave me a sense of purpose and vocation. As a kid I wanted to be a vet (dogs are safer, trustworthier, more reliable than people, after all), but by O levels I had rediscovered faith in humans and wanted to be a doctor. By the time of A levels I was thinking about the priesthood. Fifth root.
University taught me about fun (as well as a few other things!), and boy! did I have a good time. I came out. I discovered sex without guilt! I fell in love and did something about it. I discovered (much to my amazement) that other men fancied me, even some who were straight! (and no, they werent blind and one legged! And I have the photos to prove it!) I discovered a sense of self, a sense of worth. I lost some of my sense of purpose, however! Sixth root.
After University I moved to London. I met a new partner and discovered how wonderful and bitchy the London gay scene could be. Eventually I trained as a youth and community worker after spending two years working with physically, mentally and socially disabled people. The group of gay friends I made in Wimbledon are key to where I am now. Half of that group of a dozen people have died from AIDS related infections, mostly between 1985 and 1989. They probably contracted HIV during the seventies when we went round together, shared everything, even sexual partners. I have a sense of there but for the grace of God go I when I reflect back. We had no safer limits then sexually not even with whom (within reason of course! Even we had standards). HIV was about, but we didnt know its name. Seventh root.
My partner and I broke up in 1978. I fled from London to Kent. Big mistake! The years between 1978 and 1985 are my wilderness period! I was off the scene; I was back in the closet; I was even employed in a homophobic education authority. In 1981 I came under suspicion because of an article I wrote encouraging my professional youth work colleagues not to ignore the needs of gay young men and women in their youth clubs and centres. As a result I couldnt move to another authority because I had written that article no shire authority would touch me with a barge pole, because they didnt want to employ a suspect youth worker. In 1985, however, I finally succeeded in moving; into community education in Cardiff having decided never to hide my sexuality again. Eighth root.
Also in 1985 the first of my friends died from an AIDS related illness. The following year I enrolled with a local HIV agency and trained as a buddy volunteer. Guilt? Possibly. Final root.
Everything from 1985 onwards has been a steady growth rather than a new development, except for one event, or rather, one person, but more of that in a moment. That I should end up working within the HIV field, full time, was almost inevitable in hindsight, following my earlier decision to get involved in 1985. The only real surprise was that it took so long to realise it.
On reflection, I had become very materialistic and ambitious over the years. It took five years and another broken relationship, before I realised what that was doing to me, and a further five years with Society of St Francis to sort most of it out in my head. Re-discovering a truer direction and purpose for my life, which would not been fulfilled within SSF, meant it was right to leave them once I realised that. I had been working with AIDSline West Midlands as a Friar, so I just changed my frock (sorry, habit!) and carried on there, until I came to Buddies in June 1996.
After leaving SSF I met Richard, my partner, and he has turned out to be the most precious jewel ever to come my way. Weve been together three years now, and though we have had some difficult moments, we are stronger in our love for each other as a result. I really cannot imagine life without him; we have become rooted in each other. He has been a rock when my house has seemed built on sand; he has loved me unconditionally; he has comforted me in my darkest moments; above all, he makes me laugh at myself. I hope I have been able to be and do the same for him.
Journeys never really end, just as trees dont stop growing. I learnt a long time ago not to plan too far ahead as I never seemed to end up where I thought I would be. I recognise however how blessed I am being here in Staffordshire, working with people I have grown to love and respect, whom I like and admire enormously those of you who live day by day with HIV and those of you who give of your time to work alongside. From the bottom of my heart I thank each of you for what you have given to me; I trust I can repay some of my debt to you as time passes.
Clinical Nurse Specialist
I always wanted to be a nurse but my parents were of the opinion that young ladies were best placed to work in offices. In those days you did what your parents said and so I obliged by completing a secretarial course and agreed to work as a secretary for one year, on the understanding that If I still wanted to nurse. then I could. Secretarial work did little for me but I have to thank my parents for insisting on that experience, because of course those skills have been an asset to me since. A year to the day, I commenced my nurse training at the Queen Elizabeth Hospital in Birmingham. When qualified I became a theatre sister.
After several years of theatre work and when my children were born, I decided to take a break from nursing and became the office manager, shepherdess and calf-rearer of our family farm, working also part-time as a counsellor. Fifteen years later I decided to obtain further professional qualifications and returned to nursing. I trained as a District Nurse, a Community Practice Teacher and then whilst working in the community, undertook a degree in Health Studies, graduating in 1993. Following that I worked half- time as a Community Nurse Manager and half-time as a Nurse Specialist caring for people with HIV/AIDS.
In 1993 the opportunity arose to develop a Genito-Urinary Medicine Clinic in Tamworth and I relinquished the nurse management part of my role to take this on, whilst retaining my community HIV work. This has worked out well because it gives me the opportunity to see people with HlV both in the clinic and in the community. I am sure this contributes to the provision of continuity of care, which is so important for people with HIV.
I cover the areas of Lichfield, Burntwood, Tamworth, Burton-Trent and Uttoxeter. Occasionally it is necessary to go over the boundaries to support. people and their families. Some people. receive medical care from units a long way from Staffordshire and an important part of my role is liasing with colleagues from wherever care is received.
I come from Ireland and every year give in to the yearning to return, if only for a few days.Sometimes I get upset when I meet people with HIV in Ireland who for whatever reason, do not receive the sta ndard of care we aim to provide here I then think of the millions of people in other parts of the world who receive less or very often nothing at all. I return knowing that my contribution to people with HIV is small, but hopefully worthwhile.
Robert Peel Hospital, Tamworth
Last issue Michael Carey started to look at the benefits issues involved in returning to work in some form or another. In this third and final article in this series he concludes by examining the effect returning to work will have on Income Support.
The following letter arrived by e-mail addressed to Bob. The writer has given us permission to print it in full. We think that you will consider it a worthy item for inclusion.
Something to say? wish to comment on our newsletter or web site?...just click below to..
We now have packs of fact sheets on treatment from George House in Manchester they not only contain the Crusaid & Star Information Exchange facts sheets which are issued to patients at the Kobler Centre in London but also sheets from BP London and the National AIDS Manual. There is a separate pack of sheets for each drug as well as information on side effects such as Neuropathy and diet sheets appropriate to certain drugs. We also have sheets from the ATIS Web Site.
These facts sheets are the best available as they give the fullest information including details on how to take the drug, possible side effects and best methods of storage and where appropriate a diet sheet as well.
NB. Those people who have taken photo copies of the packs which relate to their own drugs have found them useful. So dont be shy - ask someone to photo copy whatever you need.
Positive Discounts is an excellent scheme which now costs nothing to join and allows you to buy goods with a COUNT DOWN card which is virtually the same as any other Count Down card ie there is nothing on it which would identify you as positive to a shopkeeper. You get a book which lists the shops which give discount by regions, and there are a surprising number in our area. There are application forms in the filing cabinet under the computer.
NB The holiday insurance service previously offered by Positive Discounts no longer exists, but there are other companies who have taken their place offering travel insurance to anyone regardless of their HIV status
LIBRARY - RESOURCES ROOM
Although it is still a bit chaotic and there isnt a table you can sit at, the resources room is a useful place to find all kinds of information.There are Books, Pamphlets, Newsletters, NAM updates as well as sheets of information downloaded from the Internet. If you cant find what you are looking for, just ask, there is usually someone around to point you in the right direction.
Look out for the new furniture which is due to arrive any time now. New display holders have also been ordered so that some kind of order can be achieved and a useful library / resources room should begin to develop.
Dont sit back an watch it happen - lend a hand whenever you come in to the centre. There is plenty of sorting labelling and filing to be done. Whatever help you give will make you feel that you are part of a self help organisation.
Acupuncture is one of the most important and effective branches of Chinese Medicine. It is an holistic therapy which originated in China over 5,000 years ago and is now widely practised in the Western World. By inserting fine needles into specific points in the body the life force (Qi) is stimulated enabling it to return to health, balance and harmony in body mind and spirit.
When Western medicine first came to the East the traditional physicians were amazed that their Western counterparts gave exactly the same remedies to all their patients suffering from the same symptoms. In acupuncture no two patients are treated identically even if their symptoms appear on the surface to be the same. Chaiang Tse (4th Century Daoist thinker) wrote:
Hence the wise men of old
did not lay down
One measure for all.
Sickness is not understood in terms of isolated organs as though they were cogs in a machine, but rather as the dysfunction of a normally harmonious, complete living entity. Harmony and balance are at the centre of all Chinese medicine and nowhere more so than in acupuncture. All systems of medicine can be practised more or less holistically, what is remarkable about Chinese medicine is that it places diagnosis of the person at the core of its diagnostic process. Acupuncture has always specialised in treating human beings, not illness. The aim is always to improve the patients mind, body and spirit. In this regard these words of John Milton seem apt : It is not miserable to be blind; it is miserable to be incapable of enduring blindness.
Acupuncture, like all Chinese medicines is best at treating chronic conditions. But in the event of a serious accident even the most die hard believer in Chinese medicine would want to be taken to the casualty department of a hospital in preference to an acupuncturist. Once the emergency has been dealt with however, acupuncture becomes invaluable in helping the patient to recover from the effects of shock and trauma.
Acupuncture is an excellent form of preventive medicine. Something we are only beginning to fully appreciate. We tend to wait until there is something wrong with us before doing anything about our health. A famous passage from the Nef Jing states a fundamental precept of acupuncture: When medical therapy is initiated after someone has fallen ill, when there is an attempt to restore order only after unrest has broken out, it is as though someone has waitedto dig a well until he is already weak from thirst, or as if someone begins to forge a spear when the battle is already underway. Is this not too late?
Acupuncture can also help boost the bodys immune system. For this and all the forgoing reasons it is hardly surprising that people living with HIV chose to overcome their fear of needles and undergo acupuncture because of the many benefits which it can provide.
Tubby Tummies revisited
what we can we do?
of Consent Debacle
a disease into a crime!
will go underground
pressure is needed
a difference a printer makes!
This is what you need:
2 large ripe bananas
Large tub Greek Style Yoghurt
tablespoon clear honey
And this is what you do:
Slice the bananas and put into a large bowl with yoghourt and honey. Mix in blender or with wooden spoon.When thoroughly mixed,place in freezer and beat after a couple of hours to break down the ice crystals. When frozen,serve in iced bowl with wafers.
This recipe comes from Julie who saw it on the tele she thought it sounded so yummy and easy to make that you might like to have a go. Robert has taken a break this month but will be back with more tasty healthy eating ideas in November. (Someone who has tried out this receipe says it is absolutely fabulous!)
There are two types and two spellings the herb; Roman Camomile (left) & German Camomile.(Right) German Camomile grows wild in this country and is easily cultivated for home use,it is excellent for making tea. Roman Camomile is also grown in Western Europe and is the one usually found in essential oil form. They both have a long history of medicinal use both internally for all manner of digestive problems and for the relief of tension and externally for sore , itchy skin and eczema. Jean, our therapist says it is one of the best oils to have in your collection. Like Lavender and Tea Tree Oil it is a wonderful healer.
Together with ( the hardcopy of ) this newsletter, HIV+ readers should also find a copy of the questionnaire sent out by Sigma, one of the finest research organisations in the country. Please fill it in and return it to SIGMA in the prepaid envelope provided.
Most surveys are London based and do not truly reflect the whole country. By completing the form you will be doing yourself and others a great favour in producing a more accurate overall picture.
BP Staffs promised SIGMA that help would be offered in completing the form to anyone who needed it, so if you would like assistance ring the office now. Complete confidentiality is assured.
Views expressed in this newsletter are those of individual authors and not necessarily those of Body Positive Staffordshire nor Staffordshire Buddies . Copyright of the articles remains with the author and items may not be reproduced in any form or medium without their permission. Any mention of treatment or therapy does not constitute an endorsement by either of the aforementioned organisations.
The mention, contribution or likeness of any person or organisation appearing in this publication is not to be taken as any indication of the sexual, social, political orientation nor of the HIV status of such persons or organisations.
Staffordshire Buddies is a registered charity (No. 1047375) governed by a committee of trustees. This executive committee currently comprises 12 people, including the 2 service user representatives recently co-opted onto it. Charities are public bodies therefore anyone can attend committee meetings to observe the organisations business. Any service user, client, volunteer or member who wishes to sit in on meetings should contact the office for details.
The purpose of the Newsletter is to offset the loneliness, isolation and anxiety often encountered by people living with the HIV/AIDS. There is, however, no restriction to being placed on our mailing list which currently extends to volunteers, health workers, hospital departments, doctors, dentists and others who interested in matters around HIV & AIDS.
We are a bi-monthly publication. Feedback on content, policy, format or whatever is encouraged and submission of articles and letters are always welcome from anyone regardless of their HIV status.