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respite & retreat

Recognising a Need - An Overview

The September 2003 iissue of @TVPS a newsletter produced by Thames Valley Positive Support, saw the last of the reviews on specialised respite and retreat facilities within the United Kingdom, sadly the article looking at ‘The Living Room' had to report their closure. Here we take a look back at this vital service provision and some of the reasons why this area of support is struggling to survive, and some of the solutions being employed by the few organisations offering this service. We will take a look at those who fund such service provision and what organisations are doing, and not doing to help the continuation of this proven benefit to those ‘Living with HIV''.

Firstly, the changes in funding criteria and the short-sighted attitude of HIV Grant Giving charities and statutory bodies that are able to fund this specialised service. It is blatantly obvious that the impact of combination therapy, and moreover the cost of these drugs has impacted on money available. Even a one time major funder of respite and retreat has been quoted as saying recently “In the advent of anti-HIV drugs people are surviving, therefore long term survival is guaranteed, therefore there is no longer a need for this type of support”.

How can an HIV Charity with all the experience of Crusaid be so short-sighted, and what has happened to the advocacy and fight that HIV charities once felt so strongly about. Another statement comes to mind when a popular HIV Respite Centre was asked about considering adapting their services, and seeking other funding sources. They responded with “The future of our facility is tied up completely with the future direction of respite care”. This particular respite centre also stated “there is a question of how many of our ‘guests' do genuinely need respite care”. These emotive comments coming from charities within the field, and who constitutionally should be looking at all aspects of support and care for those who are HIV-positive, smacks of utter complacency, which does nothing to help the situation and the continuation of such a vital service provision, proving beyond doubt even some HIV charities are ‘Out of Touch'.

Those in HIV services provision continually complain and bleat on about the complacency and attitude of government statutory bodies, and those in the health service not recognising the need, blaming cut-backs in funding and the advent of combination therapy, although clearly advocating the fact, although these drugs do help, in many cases, the life expectancy of a person with HIV. There are still inherent problems with serious side-effects and adherence. They are then seen to contradict themselves at every opportunity. Crusaid does not help its cause when quoting such comments as above, and what right does a respite centre have in questioning the need for respite when the guest is resident, and the fact of them being there is surely a good enough reason for being there in the first place. A far more qualified expert had obviously seen the need! Many of the charities that were reviewed have clearly stated a need to adapt and look at the options open to them to remain and continue respite and retreat, as for many their life-blood is recognised in the support facilities available within the strict care home structure. However, it is clear an adaptation to those services may be their only option and if they are not willing to fight for their survival then they too will share the same fate as the Living Room.

Do those with HIV need respite and retreat; has anyone bothered asking or researched into this area? It has in the past been taken for granted a person living with HIV has been unwell, therefore may need a respite break. In the early years life expectancy was extremely short and money was poured into certain areas of support. They found the money then, so why not now! It is acknowledged that life expectancy has been increased, and many of those living with HIV now have a slightly better quality of life. In the main this is because services were maintained, and there were no serious fears or funding cutbacks, provided a charity would fight and justify a need. Many people are either unaware of a right to respite, or discouraged because of funding limitation. Some simply do not like to ask, and are in fear rejection or they may need to justify the need.

Kernow Positive Support believes that a majority of those given the chance of being offered respite or retreat, would in many cases jump at the opportunity. The same could also be said in encouraging those entitled, “if you don't ask you won't get!” a large number of HIV charities have had major times of crisis and could have ‘gone to the wall' on a number of occasions. However, many have fought back and will continue to do so if needs be in the future, in the firm belief that those foundations laid more than 20 years ago, are maintained and continued. We have learnt from our failures and adapted to the difficult changes within this ever-changing world. It is recognised HIV services are being slowly chipped away, and the fight against HIV and AIDS still needs to be fought. Not only by educating the public, but more importantly those funding bodies who can make a difference and even perhaps those charities within the field itself. A poignant and stark reminder is, to have HIV charities become complacent even within themselves?

Many of those with HIV in the early days had a certain fatalism, and many died. Many now have an inner strength, given to them by peer support and realisation that you can live with HIV, and not just await death. This attitude was inspired by specialised HIV support structures, allowing people to interact and share experiences, empowering each other. Maybe as service providers we should now take a leaf out of our clients books, because If we are not careful, we may return to the bad old days, and who will be guilty and to blame? No-one other than ourselves!

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