No, not another spelling mistake....HAART stands for Highly Active Anti-retroviral Therapy - combination therapy that includes a protease inhibitor. The good news is that we can indeed take heart from the optimistic findings of the Chicago Conference in February. Studies show that even people with extremely low CD4 counts can experience very substantial improvements during HAART therapy. The most recent studies show that in people receiving HAART:

	not only the quantity but also the quality of the CD4 cells improves - they appear to be proper functioning cells
	damaged lymph nodes regained their normal structure
	Swiss doctors reported that there was evidence of immune reconstitution even amongst people who did not achieve an ‘undetectable’ viral load
	Doctors from San Francisco found that people who failed to achieve or maintain ‘undetectable’ viral load still experienced CD4 count increases and were at very low riskof developing opportunistic infections

These studies are grounds for considerable optimism. They suggest that even people who start treatment relatively late may enjoy real and substantial improvements in their immune functions - questioning the need for ‘hitting early’ with anti -HIV drugs .

However, whilst all these findings are extremely encouraging, we must not forget that for some of our readers (about 10-12%) these new drug therapies cannot be tolerated, and for them the situation is very different. Not only do they continue to suffer ill health, but they now find themselves feeling even more isolated as they watch their friends respond to these new treatments. They need our support and understanding even more than ever before.

BP Staffordshire meets first Tuesday of each month at 6pm Hanley Centre.

No meetings July & August (Summer holidays)

Next meeting 1st September

Services

Tuesdays 2.00pm - 4.30pm Drop-In (Therapy Sessions to be booked via therapists)

Thursdays 2.00pm - 4.00pm Drop-in (Therapy Sessions to be booked via therapists)

Internet and Computer Access by arrangement (Tuition available Tuesday evenings by arrangement with Bob.)

Volunteers

Tuesday 7th July Volunteer update & social 7.30pm

Join us for a cruise through queer books - A sketchy look at gays and lesbians throughout literature - from the Greeks via Romans and other Europeans to the present day. It’s fun, risqué and is bound to offend someone!! Taking place on Sunday 12th July from 8pm till 10pm at Scruffy Murphy’s in Hanley, you will be treated to extracts from all kinds of queer literature from Roman limericks to Plato and all that’s in between!!
Find out about Sappho and her gorgeous lesbians, David and Jonathan’s fun with a sling (!), and the lovely lady from Church Lawton Hall and her lady friend from Yorkshire at the beginning of the 19th Century. Hear a conversation between Keanu Reeves and River Phoenix after the filming of My Private Idaho...and a few dirty ditties about local gay rights campaigners and scene queens!!. A good night is promised and all the funds raised will go towards our next production -The Normal Heart -for World Aids Day 1998.
For more information ring (01782) 632746

Robert, our resident chef writes....“Exercise is important to us all, but we have to find something that we enjoy or boredom soon sets in.Suffering from back and joint problems I found swimming was something that didn’t aggravate my condition and I started going regularly with my buddy about 18 months ago. After a few weeks I had progressed from a couple of lengths to around 30 or 40 and now go 2 or 3 times a week. I really look forward to it and I only miss going if I am ill. It gives me a real buzz! Maz approached me and asked us if we would do a sponsored swim for Staffs Buddies and we thought it was a great idea, so my Buddy and I set a date.” Robert and his buddy went on to raise £103 and said afterwards “We both felt thrilled at putting our talents to good use...and didn’t fell guilty about having our coffee and fags afterwards !!” Well done both of you!

Anrew Colclough
 

Most people reading this only know me as Andrew the manager of Staffordshire Buddies. I guess the point of this profile is to tell you a bit about Andrew the person and how I’ve ended up where I am today.

To start at the beginning, I was borne in Trent Vale, Stoke on Trent on 23rd October 1962. I went to a local comprehensive school and then on to do A levels in maths, further maths and physics. I dropped out without completing the course both because I disliked the college and because I was trying to cope with the personal turmoil around my emerging gay sexuality.

 After ditching the A levels I worked for five years as a Building Services Engineer (Heating Ventilating and Air Conditioning) of which I spent around two years in a boiler suit and three in the office doing estimating. During my two years "on the tools" I learned a fair bit about people and grew up somewhat. I finally left because I got fed up with the overt anti gay atmosphere of the business and also because of basic boredom.

Fortunately I'd been attending college as part of my work training and had a string of qualifications that enabled me to gain entry to Birmingham University as a mature student where I studied Philosophy, graduating in 1988. During my time at University I "came out" as a gay man and was heavily involved with the University Lesbian and Gay Society including some early campaigns around health education in the emerging HIV epidemic. I had a string of casual gay affairs before eventually settling down with my partner Ken whom I moved in with at his home in South Derbyshire after completing my degree. We recently celebrated the twelfth anniversary of our first meeting and have now lived together for over ten years.

While I was at University my father died and this was followed by a number of family bereavements. Towards the end of my degree a fellow mature student, David, to whom I had grown very close, died as a result of a long-term serious illness. Death became a part of life and reconciling these experiences became a significant part of what has become a personal journey of spiritual unfolding and self-discovery.

I found comfort in contemplating the "big picture". Every moment, every interaction each person has with the world is a point of change that would be different if that person did not exist. So although people die, they remain a part of what follows, their influence lasts forever.

After graduating in 1988 I worked as a self employed artist marketing copies of my wildlife watercolours to the gifts trade selling around 20,000 prints under the name "Andrew John". While running this business in 1990 I volunteered to be part of a Buddy service in Derby helping people living with HIV or AIDS. Its hard to say exactly why I volunteered; it followed from so many of the things that had happened before – coming to terms with being gay in the emerging HIV epidemic, the previous experience of supporting my friend David at University in the final year of his life, the drive to make a positive difference to the lives of other people&ldots; all of those things and more than just those things. I was one of the first batch of volunteers at the Derby Buddy service and was linked to support someone in early 1991. The friendship I developed with that person and the difference we both made to each other was of life changing significance.

My artistic business didn't provide either the income or the fulfilment I needed and in 1991 I applied for and was appointed to the position of development worker of Body Positive North Midlands which was then based in Hope Street Hanley. Without going into the full history of our services it is suffice to say that this has grown into the role I have today.

I mentioned above that I see life as a journey of self-discovery and spiritual unfolding. Over the years I've drawn inspiration from many of the world's religions but I don't consider myself to be a part of any of them. I'm particularly interested by eastern faiths which seem to me more humanly spiritual than much of mainstream Christianity. I believe that through the experiences that living gives us, we continually change and spiritually grow. During the last few years I have found that many of my colleagues working in caring professions have similar views - talking and sharing with them has encouraged me to explore this more deeply and to be more open about my spirituality. Through reflection on my long experience of caring about the people I work with I have come to appreciate the difference that they have made to me. Although to many people my role may seem to be one of "carer" I think that we are all in fact equal participants in the flow of life that leads us on our respective journeys. And those journeys may be part of some greater journey that we all ultimately share.

That’s how I see things, its what gives me peace when things get difficult, and its what helps me to put love into my work - and I do think that love is very important in this job.

Andrew

I joined Staffordshire Buddies about 4 years ago as a volunteer and I can say that it has changed my life dramatically. Very early on I decided that I wanted a career change which involved working with people living with HIV, and now, 4 years later, I am working alongside Jenny Read as an HIV counsellor. One area of my work which has changed significantly is my relatively recent involvement with women, children and families. It was a challenge responding to these new needs, something which had previously not been developed. I hope that I have been able to meet that challenge and work effectively with them. This has meant that the services that Jenny and I provide have widened considerably and have consequently involved us in additional training which I’m sure will be to the benefit of everyone living with HIV. Whilst not being able to solve all the problems I encounter, I hope that I can at least provide a safe space for people to share them with me.

Last issue Michael Carey looked at the general issues of returning to work in some form or another. This time he deals with the benefits issues relating to DLA and Income Support.

The May /June edition of Positive Lives incorrectly stated that the editor of that issue was Bob Lishman. This was the original intention, but due to other commitments this edition was finally edited by Maurice Greenham. Please see Mauice's Angle for more apologies regarding accuracy in the last edition.

Feedback and

Local responses:

	I get quite a lot of magazines and newsletters to read and I usually just skim through them and pick out the bits I fancy, but this one (Positive Lives) I read cover to cover.
	They just keep getting better...
	This last one was the best; it had so many different contributors...

A Letter From a London Reader:

The reader wanted to share his good experience with a new pain drug prescribed by his doctor to help with severe Neuropathy. After experiencing pain in his legs, so bad he was unable to sleep or get comfortable enough to read in bed, he was offered a new drug (Gabapentin) by the pain specialist at the Charing Cross Hospital along with a fresh pain killer (Zamadol). He took these at the recommended dose of 1 each three times a day and after one day - NO PAIN!! He is now able to sleep and read without discomfort.
Let us know if your doctor does something good.....

email us?

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.

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. Although it is still a bit chaotic and there isn’t 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 can’t find what you are looking for, just ask, there is usually someone around to point you in the right direction.

LATEST ADDITIONS:

“Fasten Your Seat Belts” a cassette produced by GMFA (Gay Men Fighting Aids). This is an interesting compilation of interviews with gay men who have been recently diagnosed HIV+. Men of different ages, backgrounds and lifestyles tell of their own reactions to being diagnosed positive.

New booklets from NAM have been added to the stack of those already available.

* Viral Load

* Starting Combination Therapy

* Clinical Trials

* An Introduction to HIV treatments for African People

Where you find multiple copies help yourself but please inform the office when there is only one left.

A list to help you start a search on the Internet has been down loaded from the AEGIS website, you will find it in the filing cabinets with the computer.

 NB: The files are not private they are there for your use, please help yourself or ask for help.

Reproduced below is an extract from the forthcoming Staffordshire Buddies Annual Report written by one of the Service User Representatives. Positive Lives would be interested to know from readers (but especially Service User readers) if they consider that the statement fairly indicates what has happened over the past year.

SERVICE USER’S VIEWS

It is remarkable to see what has happened in the space of one year. Service users have gained representation on the Executive of Staffordshire Buddies with full voting rights; the newsletter has become an important means of communication appearing regularly and being client led and we even have a Web Site on the Internet. Another important achievement has been the reformation of Body Positive Staffordshire as a self-help group solely of people living with HIV. But above all the main change has been treatments that promise a longer and healthier life and which are now available to all those who need them.

Of course it hasn’t all happened at the wave of a fairy’s magic wand. The achievements involved much hard work and deliberation and one must not forget that new rights bring with them responsibilities and commitments. So far as treatments are concerned, it would be fair to say that everyone has had some difficulties in taking the new drugs, has experienced unpleasant side effects to a greater or lesser extent and few have taken to the strict medication-diet regimens easily. Nonetheless it has to be recognised that those of us who made it into this year were the lucky ones. We should however remember there are those who did not manage the few more months which might have given them the hope of life and the possibility of a future.

Emphasis has switched from just trying to keep from dying from the disease to the prospect of a possibly long life with the it. Compliance with the drug regimens, achieving an undetectable viral load and stress management have risen to the top of the agenda; everyone has to find their own way of dealing with them. Complementary therapies have become very important for some, returning to work is a burning issue for others. Consider though, those who have no such choice as the drugs do not work for them and think about the increasing number of those whose treatment is failing. According to HIV specialist doctors, however, the future is positive and they expect to see fewer deaths and less people with opportunistic infections.

Throughout the year Staffordshire Buddies, under inspired leadership, have done a remarkable job in responding to the changes. The presence of service users in the management team was welcomed and encouragement has been given to all new initiatives from service users. The service user representatives have been involved in all major decisions including the fundamental changes needed to the ethos of the training scheme for volunteers which in the future will include the MesMen project in Lichfield and the Gay Men’s’ Health Project in Shropshire.

The steeplechase of change is far from over and no doubt there will be some surprise fences ahead. We have already seen some excellent prize horses and some very useful ones fall at recent hurdles whilst we have remained in the saddle. Let us hope our success continues. Staffordshire Buddies can be proud of its achievements over the last year and from a service user’s point of view the going looks good, for the stretch immediately in front at least.

Maurice Greenham
Service User Representative

Here is a selection suggested by the Medicinal Herbalist at a recent respite weekend.

 

Fatigue:
Eating more proteins than carbohydrates helps. Carbohydrates (like pasta) are great if you need a quick burst of energy but proteins (like Soya Protein Isolate) will give you more sustained energy, as will Milk Thistle, Ginseng, Oats, St Johns Wort, and Thyme (a cup of thyme tea will set you up for the morning !).

Nausea	Ginger, Peppermint
Flatulence	Meadow Sweet
Diarrhoea	Slippery Elm, Golden Seal, Meadow Sweet and Marigold
Peripheral Neuropathy	St Johns Wort (internally and externally).

 

Don’t forget these herbs are complementary not alternatives to medication. If any of these side effects are giving you trouble you should get medical advise - there are conventional drugs which might help.

Yoga is an ancient discipline concerned with developing a holistic, healthy and harmonious lifestyle. A combination of physical and mental exercises which promotes flexibility, reduces stress, increases stamina and strength, Hatha Yoga is the form most commonly practised and includes:

* Asana (Physical posture)

* Pranayama (Breath control)

* Deep relaxation

These three aspects can help develop a personal way of coping with daily problems, and ongoing stress Most yoga classes try to work on four areas:


Suppleness; being able to bend stretch and turn through a full range of movement. If you develop flexibility, you will remain active longer.

Strength - Daily practice of exercises will improve strength and increase bone density.

Stamina - Able to keep going for longer without feeling tired. Exercises works on the cardiovascular system, preventing heart disease.

Concentration - Training the mind . This aspect teaches us to focus our minds - a fundamental point of the practice of Yoga.

Classes can be found throughout the county, most further education colleges run them and the Piccadilly Project intends to run one after the end of the current Tai Chi course. Further details from: The British Wheel of Yoga, 1 Hamilton Place, Boston Road, Sleaford, Lincs. NG34

Maurice’s

Viagra

Would you believe it? Just a little mention of Viagra at the end of the last newsletter and all the world latches on! I shall have to watch my words in future. Despite all the newspaper, magazine and TV coverage no one pointed out that one of the side effects, apart from possibly causing death, is that it can make your hair fall out. None of the media gave warning about using Viagra with Amyl Nitrate - potentially lethal - it causes hypertension according to the manufacturers Pfizer. So if you're into poppers forget Viagra, but I guess if you’re using poppers you probably won’t need Viagra anyway. For those of our readers who are wondering why Viagra at all, I should perhaps point out that one of the many side effects of taking HAART for some people is a diminished libido and impotence.

Barbaric

Swedes are not the only ones to allow barbaric treatment of HIV+ people - so I guess I owe them an apology for saying that they were the worst country in the world. I was in fact only quoting from Sue Newman’s article “Bleak House” in the March edition of Positive Nation. Since the last issue I have read too many accounts of other countries where passing on the virus is a criminal offence, so it now seems unfair to single out Sweden as the worst. Even a country as enlightened and civilised as Australia has blood on its hands with the suicide of a positive man jailed for having unsafe sex. Peter Reardon hanged himself in a prison shower wing of Port Philip jail in Victoria. There have been three HIV related prosecutions under Australia's 19th Century ‘reckless conduct’ law in the last year. I wonder how many prosecutions there will be in Staffordshire if Jack Straw’s proposal to make the transmission of HIV a possible criminal offence becomes law ?

Campaign

I shall be writing to my MP to express my very strong feelings on this issue. If you don’t feel like writing to your MP but would like to show your support you can add your names to the campaign being mounted by the George House Trust, Manchester. You just have to sign and write your name and address twice on a pre-prepared card and pop it in the post. The card doesn’t even need postage but if you stick on a stamp it saves George House money. Cards can be obtained from me at the centre.

Lipodostrophy

The redistribution of fat was first noted in HAART patients who were taking Crixavin (Indinavir) so it was given the name ‘Crix Belly’. It was soon found that the fatty deposits in the abdominal region occurred with other protease inhibitors especially Retonovir. The name then changed to ‘Protease Paunch’ More recently people who are on antivirals but not protease inhibitors have shown the tell tale signs of muscle wastage in the face, upper arms and thighs with a fatty deposit around the abdomen. Considering there is little you can do about it you may as well treat it with the same frivolity as myself and call it ‘Teletubby Tummy’.

Gay Forum

The last Gay Forum was held on a Friday instead of the usual Thursday ( I can’t do Thursdays because of choir). So I was there along with a goodly crowd of folk who were there principally to listen to the guest speaker who was none other than our local MP and Minister of Culture, Mark Fisher. Mark explained that he was a founder member of the Parliamentary Stonewall Group and had always supported equality for Lesbians and Gay men. Before coming to the Forum he had a briefing with Angela Mason (Stonewall) and was horrified to find that so little had changed in the past decade with regard to so many issues around discrimination. Voices from the floor applauded his stance and wished that there were more MPs like him in the house of commons. The same voices, however, pointed out that the government seemed to be backsliding on their election pledges on equality. He was unaware of recent quotations by Minister Mike O’Brien which admitted that the Government had stalled on gay equality measures because it feared the reaction of the tabloid press! The next question is, will the Government allow the tabloids to take over judgement in decisions regarding HIV transmission?

HIV is a gay issue.

It was heartening to hear Mike Wolfe point out that as approximately 70% of people living with HIV are gay men , HIV has to be seen as a gay issue. Maybe there ought to be an HIV+ representative on the Gay Forum. Any offers?

HAART

Side effects - I was trying to think of a way of putting across this down-side of HAART without getting too morbid. I thought of saying ”it was not surprising many of us experienced painful digestive problems when you considered how much toxic waste we had to process daily.” Instead I recommend you to read “Twinkle, twinkle little toe” in the June edition of Positive Nation. It’s an article about PN (Peripheral Neuropathy) it had me in stitches.

Take care,


Maurice

In Maurice’s Angle” in the last edition of Positive Lives, Dr Singh was wrongly described as Head of the GUM clinic. The head of the clinic is Dr. Sivapalan. In the same article, cuts in funding were mentioned; in fact there have been no cuts - because of the foresight of the Health Authority, the expected increase of budget required by the new antivirals and protease inhibitors was anticipated and additional funding was secured.

Maurice Greenham, the author of the article, (and Editor of that edition) wishes to apologise for these unfortunate errors.

 

 
Ingredients

1½ lb. Carrots (peeled & sliced)

2 Medium Onions (sliced)

1¾ pints of Chicken stock

1 Orange

2 tablespoons polyunsaturated oil

Method

1. Heat the oil in a saucepan, add the carrots and onions and cook gently for about 10 minutes until softened

2. Add the chicken stock, season with salt and pepper to taste and bring to the boil. Lower the heat, cover, and simmer for about 40 mins or until the vegetables are tender

3. Sieve the vegetables and puree with half of the stock (in a blender or food processor) and return to the pan with the rest of the stock.

4. Meanwhile pare half of the orange rind thinly (using a potato peeler) then cut into shreds which you cook gently in boiling water until tender.

5. Finely grate the rest of the orange peel into the soup, stirring well.

6. Squeeze the juice of the orange into the pan, then reheat the soup gently. Drain the shreds of orange rind and use to garnish the soup before serving.

 

Ingredients

4oz wholemeal breadcrumbs

½ pint low fat natural yoghurt

salt & pepper

4 eggs

¼ pint of semi-skimmed milk

6oz mushrooms (sliced)

4 spring onions (trimmed & chopped

3oz strong cheddar cheese (grated)

Method

1. Mix the breadcrumbs and ¼ pint of the yoghurt to a paste, adding salt & pepper to taste

2. use the mixture to line a 9 inch flan dish or tin, pressing the paste into shape with your fingers.Set aside

3. Whisk the eggs and milk together with the remaining yoghurt, adding salt & pepper to taste

4. Arrange the mushrooms, spring onions and half the cheese on the base of the flan. Pour the egg mixture over the top and then sprinkle with the remaining cheese.

5. Bake the flan in the oven at about 350°F or Gas Mark 4 for about 30 minutes or until brown and set.

Serve warm with salad. (note: the unusual base for this flan is far less fattening than a conventional shortcrust pastry.

Enjoy

Robert

Do you have some spare time on your hands?

We have recently started a new Drop-in Task Group and have identified several jobs that need doing around the Hanley Drop-In Centre.
We need volunteers that can help with basic DIY, gardening, and decorating (doing the same kinds of things that need doing around the home, that when put out to professionals are incredible expensive).

news@staffordshirebuddies.co.uk

http://www.staffordshirebuddies.co.uk

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.

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.