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long term survivors

Specialised Weekend HIV Retreat

Here we take a look at The National Long Term Survivors Group (NLTSG), who offer ‘Living Proof' residential retreat weekends four times a year. NLTSG is a registered charity (1040586), and was set up over 10 years ago to provide support for people by people who had been living with HIV and AIDS for five or more years. NLTSG is one of the very few Self-help groups to survive that is entirely run by people who are HIV-positive In the early '90s, when the group was formed, reaching five years with an HIV diagnosis was something of a milestone and the group provided support to those who were dealing with an uncertain future and coping with the loss of loved ones and friends. New drug therapies have meant that many now live for much longer but this has not made the work of the group any less relevant. Apart from dealing with a life-threatening disease, those affected by HIV have to cope with these new and powerful drug therapies, the continuing stigma surrounding the disease as well as many other issues. The group provides a safe place to discuss and share experiences.

The main work of NLTSG takes the form of organising residential weekends at a number of venues. The function of these is to provide a safe environment where participants may share information relating to their physical or mental health with a view to promoting positive attitudes to living with HIV infection. What will I find at the Living Proof Weekends? NLTSG aims to provide support to men, women and children living with an HIV positive diagnosis of five years or more. NLTSG, as its name implies, seeks to encourage mutual support and communication amongst those who are living with HIV. Currently, these weekends are being held at Shallowford House near Birmingham.

The weekends provide a safe, relaxed place for up to 30-35 people to meet others who have also been living with HIV and AIDS for five or more years. A programme of activities is arranged for each weekend - group workshops, one-to-one counselling, complementary therapies - but it is entirely up to each person who attends the weekends as to whether they take part or not in these activities. Many people find the company and ability to talk freely about HIV, as well as many other issues, provides the greatest benefit. Guests are asked to arrive between 5.00pm and 6.00pm, Trustees are on duty to meet and greet people as they arrive and show them to their rooms. Tea and coffee is available upon arrival, and this time provides an opportunity to catch up with the other guests and generally settle in.

Meals & refreshments.

Breakfast is served at 9.00am with a choice of cereals and toast, together with fruit juice, tea and coffee. A cooked breakfast is also available on both Saturday and Sunday morning, but this has to be ordered on Friday evening. Lunch is served at 1.00pm and the evening meal is served at 7.00pm. Both are usually a two course meal, with fruit and cheese and biscuits also available. All meals are cooked on the premises and have been varied, excellently prepared and well presented. People with special dietary needs can also be catered for, although this must be indicted when booking. The food has proved to be a highlight of the weekend, with many commenting on the quality and quantity. There is also an evening bar available for the use of residents.

Activities & Support.

The Opening Circle is the first opportunity for everyone to get together. The trustees report on their activities and house rules are explained. The facilitators and therapists are present, to give an outline of the services they are offering for the weekend. This time also allows members to ask questions. For those attending for the first time, this occasion can be a little daunting, but it has to be said, that the atmosphere is relaxed and welcoming.

Group sessions.

During the weekend, two qualified facilitators are employed to run an open and closed group. The open group allows to people to come and go as they please, participating as much or as little as they choose. The group decides which subjects are going to be talked about, with the facilitator offering guidance and providing a focus to keep the group on track. The closed group runs in a similar way to the open group, the difference being that you must start at the beginning of the day on Saturday and if you leave at any point, except for attending a complementary therapy session, you are not allowed to return. Whilst many of the subjects covered are similar to those covered in the open group, the discussion is far more structured. There is a special group session on the Friday evening to allow members to talk and get to know each other better. This session has proved to be extremely popular is now a regular feature of every Friday evening, with a second session being offered on Saturday evening if requested.

Complementary Therapies.

Three or four therapists are employed each weekend, offering a range of complementary therapies, from Indian head massage to Reiki, through to Bach flower therapy and pharmaceutical herbal medicine. All therapists are fully qualified and offer an expert service. For some, therapy is an essential part of the weekend. For others, it is the chance to try something new. It can be particularly important for those who are unable to receive complementary therapy where they live, funding not being available or not considered necessary.

Free time.

As all the activities over the weekend are optional, you can have as much or little free time as you wish. Many use this time to socialise, chat informally about issues raised in the groups or simply chill out. There is a bar and space to find a quiet spot to relax. Most importantly, many find that this is the most beneficial time, a time to enjoy the company of others.

Closing circle.

This is the final event of the weekend. It provides a chance to reflect upon the weekend's experiences, make any comments you feel appropriate and look forward to the following weekend. It is, for many, a sad time, as the weekend seems to have gone very quickly and it will be a while before the group is together again. Once the Closing Circle is over it is time to say good-bye and, for some, the time to thank, in a personal and private way, others for their support during the weekend. Tea and coffee is served for those who are still present. Not everyone stays to the end - some have trains to catch, others have some distance to travel and may rely on others for lifts home.

Arranging your stay.

Your stay at a ‘Living Proof' weekend is arranged by contacting NLTSG, details are shown below. The weekends are open to all people who have been living with an HIV diagnosis for five or more years. Funding for HIV issues has become increasingly difficult in recent years and those who attend the weekends pay in a number of ways: funding from health authorities and Social Services as well as help from voluntary groups. Some members pay for themselves, and NLTSG are now in a position to help those who are unable to secure funding from any other source. They are also able to offer assistance towards child care costs and travel expenses. If you plan to come along but are not sure how you are going to pay for the weekend, let them know and they may be able to provide help as some areas already have funding in place for the group. If you decide to come along, you need to bring a letter from your doctor confirming you have been diagnosed HIV-positive for five or more years. Once you have shown this letter to two trustees you become an official member of NLTSG. After your first visit, essential in becoming a member, you will remain on the mailing list, receiving details of the weekends as well as any other news, until you decide you no longer wish to be a member.

Weekends for 2006

Contact NLTSG below .

National Long Term Survivors Group
Tel: 07967 430797(Keith)

Short-term Respite and Retreat can be arranged and funded by your local Social Services Department. For further information on Respite and Retreat and your entitlement click here

Take a look at KPS' overview of Respite& Retreat
Since the disolution of the Bethany Trust in November 2003 KPS has reviewed the limited specialised Respite and Retreat facilities available within the UK. By clicking here you can view KPS' overview of these facilities.

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