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Many of you will have read of complaints from a Congleton Councillor splashed across the front page of the Evening Sentinel. Positive Lives decided to investigate the allegations of dirt, noise and neglect which allegedly patients had to tolerate. When our investigator arrived at Ward 70 no objection was made to his surprise visit and he was even encouraged to take photographs of the Ward. (Not, of course, of patients!)

The ward was clean. Extremely Clean. A senior nurse pointed out that although the ward is kept as clean as humanly possible, sterile conditions were impractical to maintain on such a busy ward. There is a continuous traffic of doctors, nurses, porters, catering staff, and of course visitors who have open access to their loved ones.

As for the riotous party on the ward; we asked if their had been any other complaints. A senior member of staff told us that they had only received complaints from people for not being invited!

Ward 70 has a terrific team spirit amongst its staff. No matter how busy they are they always manage to raise a smile. They always ensure that patients worried about something have their minds put to rest. If they can't deal with a problem themselves, they will find someone who can. What Positive Lives cannot understand is why the councillor in question chose to air his grievances through the local press. The hospital has a very efficient complaints procedure; why didn't the councillor use that?. Maybe he felt it wouldn't have made him look so important to Joe Public?.

We at Positive Lives consider the complaints were unjustified and maintain our belief in Ward 70 as a wonderful example of excellence - a dedicated team, functioning well - under less than ideal conditions. If the councillor had complained at the way the standard of catering had fallen over the last few years or just how overworked some of the staff were, then he might have attracted our support. But then he probably wouldn't have got his photo on the front page of our local paper.

BP Staffordshire - see seperate article 

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

3rd Nov	World AIDS Day planning
9th Dec - Hanley	Executive Meeting - 7.30pm
11th Dec - Upper House Barlaston	Joint Christmas Party - from 7.30pm

Welcome to Maureen Cuell as part of our Newsletter Editorial Panel. Maureen replaces Sue Lander who has stepped down due to the pressure of other commitments. Thank you Sue for all your hard work, and welcome Maureen...you don't know what you've let yourself in for!!

SUNDAY DECEMBER 6th at 3.30pm.

Since its first meeting in March last year BP Staffs has achieved the following:

Initiated NAM Workshop on treatment issues with Henry Grahame-Smith from National AIDS Manual London

Back to Work Project with Mike Jones of the UK Coalition

Booked "master status" workshop

Searched for treatment information from the Internet for members

Future events we hope to have:

a guest speaker from Positive Women

A return visit from Henry Grahaeme-Smith

A visit by Ian Kramer to address a mixed audience

BP Staffs is a self help group ~ if you want something to happen let fellow members know, but be prepared to do your bit to help make it happen.

THIS ROOM IS UNDER RE-CONSTRUCTION !

Help is always welcome !

There is a lot still to do!

The notice board behind the book cases needs to be repositioned.

The corner unit wants putting together

The shelves of the bookcases have to be adjusted to fit the displays

The literature needs to be sorted and displayed in a logical way

There is a new file donated by Rebecca from the drug company Bristol Myers Squibb when she visited the centre. It is a useful source of technical information. The leaflets about VIDEX (d4t) which she also brought with her are helpful and very user friendly. Both are available in the resources room.

winging our way to ....

	After nearly 5 years in the waiting, the new wing of Ward 70 at the City General Hospital is finally finished...
...complete with a separate indoor area for visitors and patients to take a break from their rooms, this new area is a real boon...
...the new wing's separate entrance will give more confidentiality and privacy to its long-term residents...
...and with two enormous new purpose build rooms, this new wing really offers quality accommodation for long stay patients....

What a great response...

It certainly was!

Every time Positive Lives produces their newsletter I can guarantee we receive several requests from organisations or individuals wanting to be put on our mailing list. With the number of copies we print increasing our last mail out included a note from Staffordshire Buddies asking the majority of you to let us know if you still wanted to carry on receiving Positive Lives and enabling us to update our database. Within a week of sending this out we started receiving notes and telephone calls asking to stay on the mailing list. This continued until the end of September by which time we had received an 80% response. The remaining organisations on the list probably no longer existed or, like many individuals, had changed address without us being made aware. If this response was not recognition enough many sent back notes expressing how much they enjoyed Positive Lives and to keep up the good work. Working at the Hanley Centre I'm able to witness the hard work, dedication, the laughter (and sometimes frustration) that goes into producing Positive Lives and I'm sure after receiving such "positive" feedback the newsletter team can be proud knowing that, like the title, the voice of people living with HIV in Staffordshire is being heard.

Sarah E Beech

Administrator

Due to the complexity of the centre page spread (above), click on the above picture to access our special WEB-SITE version. This will take you to a new page, in a new window. When you've finished reading it, just click your <back> button to return here.

Service User Session - Report

Mike Jones of the UK Coalition gave an interesting account of the way the Back to Work Project had been set up in London and about its content and the way it had been operated. He talked about the success the project had achieved during its first year and then went on to discuss the current information about the benefits review and the barriers and problems of returning to work. From his opening challenge: "What do you say when someone asks you 'What do you do'?" and the lively debate which followed on how society defines an individuals worth , value and status by their job it was clear this was going to be a very worthwhile evening. Discussion points included: The unpredictability of the disease and one's health from day to day Maintaining strict medication and dietary regimes without disclosing status The inflexibility of the State Benefits system to deal with chronic illness which have periods of remission. The difficulty of keeping Hospital and Clinic appointments which are generally only available during the working day. Psychological issues were examined and apart from the points put forward by Mike Jones, Bob Lishman pointed out that many long term survivors were in the 40 something age range. For anyone who has been off work for any length of time they not only have the problem of explaining the gap in their employment record but there is age discrimination as well. The composition of the first and second intakes of the UK Coalition Back to Work Project was drawn to our attention together with an appraisal of its benefits such as: Providing contact with other people in a work environment and establishing a structure to the week Giving back self-worth whilst giving a chance to experience the problems and stress of the workplace. Increasing self confidence with the discovery of lost skills and the gaining of new ones. At the end of the evening Mike Jones said that he had enjoyed being with us and without exception everyone agreed that we had not only enjoyed his visit but we had benefited from it as well.  Maurice Greenham  Service User Representative

Service Provider Session - Report

Master Status - For Gay Men Living with HIV

After contacting The Network, Body Positive decided to invite Chris and Russell of CURVE to the Hanley centre on Wednesday 7th October to deliver a daytime session that was described as "a chance for you to make better sense of your thoughts and emotions about being HIV positive".

Bob Lishman gives his personal views on the days events:-

The advertising read "a day of short games and exercises followed by group discussions facilitated by two HIV-positive men". It should have read " a day of two guys reading from a booklet". I have attended many "workshops" and have found them an excellent way of training and educating. However, workshops need facilitators, good facilitators, to achieve their objectives. They need to set out their aims beforehand, and have a structure that ensures they are achieved. This had neither. The day's events were controlled by a booklet that was both poorly written and badly designed, and had the intelligence level of a 10 year-old. There was zero input from the facilitators during discussion, and to all intents and purposes, the "workshops" gained nothing from their presence. They failed to pick up on difficulties and sensitivities experienced by the participants and seemed incapable of adapting anything from the set program to cope with such a small group of people. As usual, Sarah and a couple of volunteers put on a superb lunch, which was enjoyed by all and at least made our visit to the centre excusable. Whilst I found the input from the other participants during the day fascinating, I must have sneezed and missed "a chance for you to make better sense of your thoughts and emotions about being HIV positive". I couldn't help thinking that our first Body Positive meeting had been more informative, supporting and a damn site more fun, and all without the help of "professionals". Thankfully,The Network had paid for the "workshop" so at least we hadn't wasted any money. However, for someone with a "terminal" diagnosis, with the exception of the wonderful food, I found the day a true waste of 6 hours of the precious time I have left. Having checked with other delegates it seems most of us felt the same way. We should have stayed at home and read a good book!

Wed 16th Sept 98

There was a good turnout for this meeting apart from the absence of any representative from the GUM Clinic (again - Ed). The Social Services report on the August Conference about HIV/AIDS in the community has been published and will be discussed fully at the next meeting. In brief here are some of the items appeared on the agenda:

	Service User Continuity - Peter Butler informed the group that there was an agreed protocol between Dr Tubbs and Dr Singh to decide who would be the most appropriate consultant to deal with a patient.
	Children & Families - The designated Consultant Paediatrician for HIV+ children is Dr Colin Melville Stafford General Hospital (01785 257731 ext 4018)

Sexual Health Strategy, HIV Training, Back to Work Project (See report on page opposite) were other agenda items.

Under Any Other Business the problem of the lack of drinking water in the GUM clinic was raised and that the matter would be looked into. The extension to Ward 70 is now finished and should be open by the time you read this news. As this was Dr Gillian Smiths last meeting she was wished all the best by everyone present and was thanked for all her hard work. The full minutes are available for anyone to read (at the centre) if they wish - just ask.

Dr Gillian Smith came to this district some seven years ago to take up the post of Consultant in Communicable Disease Control. A major part of her new role included job sharing the District HIV Co-ordinator with myself. I must confess to being concerned about developing such a close working relationship with a Consultant. However, all my fears soon evaporated as Gillian proved to be a joy to work with and totally committed to ensuring the developed of services in North Staffordshire to meet the need of people infected or affected by the virus.

Gillian leaves us for two reasons; firstly, to await the arrival of her second child and secondly, to take up a challenging new role of Regional Epidemiologist. As they say, our loss is their gain. I am sure I speak for us all when I say to Gillian

CONGRATULATIONS, THANK YOU AND FAREWELL.

Sue Scott
Senior Programme Co-ordinator,
North Staffordshire Health Directorate of Health Promotion

This issue's complementary therapy is
MAGNO-
THERAPY
By Chris Fradley

MAGNOTHERAPY is not new, its been around for thousands of years. The sufferer would wear bulky magnets in their clothing or tied to their body, or they would sit with their feet on large magnets. However, thanks to modern technology, it is now possible to make tiny magnets that can be used on the skin. Based on the same principles as acupuncture, MAGNOTHERAPY treats the energy meridians. The tiny magnets are placed directly on to acupuncture points and are worn for up to 8 days. Minute magnets are also placed on ear-points. It's a well known fact that our bodies are run by electric impulses which run along nerve fibres from the brain and spine to all parts of the body. These electric impulses are not randomly distributed around the body, but have definite pathways - these are the meridians. It is possible to fine-tune or correct disturbed meridians by using the tiny magnets placed on acupuncture points. Pain can be viewed as mis-directed energy and magnets can help by re-aligning that energy or by taking excess energy away from pain sites.The treatment can be very effective in controlling migraines, for example. MAGNOTHERAPY is much more than pain control, however. It can be used to assist relaxation and improve sleep or to improve general overall well-being. The therapy is completely non-invasive which means that it can be used by the most needle-phobic amongst us who would still like the benefits of acupuncture.

Anyone interested in learning more about Magnotherapy should contact the office on (01782) 201251 (or fill in the form ) and we will put you in touch with Chris.

Maurice’s

TUESDAYS

More girls than boys! Are Tuesdays becoming ladies day at the centre? One cynical observer said that this only appeared so because the number of female health care professionals and volunteers out numbered the service users by a ratio of three to one. I think this a bit of a jaundiced exaggeration. Of course, it goes without saying that the very next Tuesday not one of the girls turned up. They came on Thursday instead! But this seemingly flippant observation flagged up a significant issue. For the newly diagnosed the opportunity to meet others in the same boat, as well as giving them a chance to tap into the seasoned wisdom of long term survivors is important. So there may be some to point in continuing the old style drop-in after all.

MASTER STATUS

Although Bob has done an article on the Master Status, I feel as the instigator of that memorable occasion, that I should add a word or two of my own. It had the potential to be a great day. Memories of the AIDS Mastery weekends I have attended sprang to mind - incredibly stimulating and empowering events which I would recommend to anyone affected by HIV positive or not. However, what we got was not even a pale imitation. Bob has given you the details and all I would add is that in spite of all the odds, the true self-help spirit of Body Positive rescued the day. Who really were the ones with master status you have to ask yourself. Certainly not the leaders Chris and Russell. Events of this nature demand the complete participation from everyone, especially those in charge. As always Sarah and the troupes provided us with excellent support and a superb lunch. It was, as Bob said, worth coming just for that.

HOLIDAYS

It has been sickening to see all the beautiful brown skins of people returning from the sun and tiring to listen to the stay-at-homes moan about the short comings of a typical English summer with its lack of sun and abundance of rain. So, with gay (you said it - Ed) abandon Sue and I decided to defy the weather, brave the queues and spend an afternoon white knuckle riding at Alton Towers. Not having been for years I was astonished at how everything had changed. When I saw the little metal contraptions poking up from the ground pouring out music and information I thought we were in Tele Tubby Land. It was great! Sue knew the layout so we were straight onto the cable car and off to Oblivion. The signs told us we would have to wait for an hour but we didn’t and we met some interesting folk in the queue who kept us well entertained until we were there on the platform waiting for the next car to arrive. What excitement! Some folk were noisy and boastful having done the ride many times before. Others were quiet and apprehensive about what lay ahead. There were a few who were plain scared and I couldn’t understand why if they were so afraid they had come on the ride in the first place. Too late now to be scared! We were off! The slow climb of the carriage increased the tension. Then, we were there. Suspended in mid-air. Clouds above, ants - not people - below, waiting for us. Expecting that moment. The fall! The unforgettable fall. The rushing of air on our faces the gushing of blood to our heads The expected crash. The impact that never happened. Instead forceful but gentle swerves and curves and rises and drops. “Well” said Sue “What did you think of that?” In my best tele tubby imitation I squealed “Again! Again!” But no. There was the Nemisis to ride, the rapids to navigate the 3D experience to experience and of course the moments for recovery with a nice quiet cupper. Did we enjoy ourselves? Just look at the photo!

POSITIVE PRESS

Believe it or not, before writing a single word for each edition of the Newsletter I read as much of the Positive Press as I can. NAM Updates have consistently held top place in my estimation for accurate, current treatment information. The latest, October issue is particularly good. Unfortunately NAM is also the least user friendly with articles which are often wordy and packed with scientific jargon. Axiom, on the other hand, which for a while fell out of my favour for trying to be a trendy fashion mag, has regained my respect. It is currently a well presented and easy to read journal. It deals with relevant issues; tackles down to earth problems and has regular useful features on nutrition, food supplements, herbs, treatment issues etc. Its biggest selling point is the work-out section with the hunk featured on the cover. For £1.75 in the shops it's a good buy, for free - it's a bargain. Best of all, to my mind is Positive Nation £2.20 for sale and an absolute bargain for free! It has up to the minute issues written in intelligible unthreatening English. It has a healthy reader feedback in "letters to the editor" and some eye catching cover stories like the October issue's "cash cow" How the NHS milks the £280 million AIDS budget to pay for helicopters and surgeons' gowns. Not just effective headlines but a very interesting and disturbing article - well worth reading. As for Positive News this seemed to have completely disappeared from sight. However, on investigation it seems this monthly supplement to the Pink Paper is having a revamp and the new version will come out as a special World AIDS Day edition.

GARDENING

Someone was talking about hanging baskets at a recent drop-in and I noticed that everyone in the room was joining in the conversation. Everyone had something to say. The discussion then turned to the plants at the back which were much admired. Ideas began to be thrown around about further improvements to the "terrace." Spotting this common interest someone suggested we should set up a gardening club. NO! I thought. We don't need any more meetings. But shame to let a good idea go to waste. Hmm...? How about having a list of people interested in gardening to be pinned up at the centre. By signing up they declare their interest so that anyone interested can ask their advice or leave messages. You could ask for answers to problems, how to deal with pests or improve your plants. You might be willing to give or exchange cuttings and seedlings. What do you think? Bob reading this over my shoulder said "I've got a wonderful solution to stop cats pooing in your garden" To find out how, check the notice board.......

 Keep well!

Maurice

 

Ingredients

2oz Butter
4 Medium OLD potatoes (peeled and diced)
2 Eating Apples (peeled, cored and diced)
2 Teaspoons of curry powder
2 pints of vegetable stock (veg cubed are fine)
¼ pint of low fat natural yoghurt (at room temperature)

Method

Lemon Muesli Cheesecake

Ingredients

6 oz Muesli (sugar free if you wish)
3 oz melted butter,3 Lemons
3 Teaspoons of gelatine
8 oz low fat soft cheese, ¼ pt low fat natural yoghurt
4 Tablespoons clear honey, 2 egg whites

Method

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 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.