NOTTINGHAM’S ONLY INDEPENDENT

VOLUNTEER RUN HIV PEER SUPPORT GROUP

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REGISTERED CHARITY 1129416

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 © Tagadere

Registered Charity 1129416


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Baseline is a nationwide community magazine for people living with or affected by HIV & Hepatitis. Tagadere are very proud to have a feature included in the Spring 2015 issue.  Read on…


Resistance is futile…or is it?

The independent survival of Tagadere.

Tagadere is Nottingham’s only independent user led, volunteer run HIV peer support group.  Our inclusive ethos is exemplified in our logo which shows four hands of different colours holding each other in perpetual support.


Nottingham had been off Terrence Higgins Trust’s radar until around 2007. Prior to that, we had no strong local voluntary HIV support group and mainly only statutory support services for people living with HIV in the form of a specialist social worker, a ‘buddy’ scheme, welfare rights worker and HIV specialist nurse.

 


Social Services ran a weekly drop in to enable people with HIV to obtain peer support and access advice from professionals.  At that time we had a small user-led peer support group named Positive Attitude but without funds or charity status.  This group was helped to move forward hugely by the UK Coalition of People Living with HIV/AIDS (UKC) and a local City Commissioner who was 100% supportive.  In 2007 UKC established an outpost in Nottingham which unfortunately sank in the UKC collapse that summer.


At around the same period a large-scale review and restructure of local HIV support services occurred and a small THT presence appeared in Nottingham.


We don’t know how, they just appeared; possibly setting up their first office as the advance reconnaissance party.  A comment from an HIV positive person who was somewhat of a ‘Trekkie’ further compounded the feelings of alarm: ‘Resistance is futile…they’ll come into Nottingham and take over just as they have done everywhere else!’


With a big service provision review under way, it was clear that new services would likely be commissioned/tendered to new providers in the voluntary sector.

 

This situation coincided with Positive Attitude changing its name to Tagadere; an old English word meaning ‘together’ and  considered to be more distinctive and memorable than being yet another HIV-related group with the word ‘positive’ in their name.


The Nottingham HIV service review was completed in late 2007.  With UKC gone, the local authorities tendered for a single voluntary health and social care provider for HIV support. This substantial contract had to incorporate HIV testing, advice, benefits advice, peer support, training, prevention and awareness plus maintaining the weekly drop-in for holistic support.


At that point Tagadere did not have the capacity to bid for it which meant that THT had a clear way in; they introduced a manager from Coventry and took premises in Nottingham city centre.


This shared building had a private concierge, marble floors, an elaborate chandelier and a grand piano; all rather intimidating due to the grandeur.  THT subsequently relocated twice to equally unsuitable premises in Nottingham’s fashionable Lace Market; one was visited for appraisal by members of Nottingham’s HIV community who used the Tagadere drop-in.


Their concerns were immediately voiced regarding what they considered to be an unsuitable location on the corner of a permanently busy traffic intersection on a main artery into the city centre, opposite the main entrances for what was then the Trent FM Arena and also the bowling alley. Dissatisfaction was also registered about the lack of size and limited facilities for private sessions; the lack of disabled access and there only being a small area next to the toilet for a kitchen space.


These concerns were reported to THT who nevertheless proceeded to rent the premises, seemingly preferring to stay in a fashionable and expensive area of the city rather than consider the doubts expressed by service users.


THT made it absolutely clear that when they were awarded the contract they would immediately abandon the established weekly peer support drop-in.  The manager at that time stated to Tagadere that THT ‘don’t believe in drop-ins, they foster dependency and a soup kitchen mentality’.


At this point the City Commissioner intervened to renegotiate the contract, giving Tagadere a separate contract to run the weekly drop-in.


Tagadere received £10,000 per year which was a small fraction of the total budget and was to include venue hire, running costs and a hot lunch for service users cooked by service user volunteers.  A weekly meal is something which Tagadere maintains to this day as a core activity.


Service user enthusiasm for developing the nascent Tagadere into a more focused, cohesive group evolved in early 2009 into the formation of a dedicated board of Trustees who created a Constitution and applied for charitable status which was granted in May of that year.

 

Since 2008, THT have been here in force, doing their thing and growing their staff team.  Other local organisations and services have tried to work in partnership with them and cooperate for the benefit of service users.


The original manager from Coventry was promoted and replaced with yet another non-local manager.  THT did not advertise externally for the centre manager position.


Tagadere and THT coexisted for several years as services which were not in competition with each other but which existed as complementary services to meet the diverse needs of people living with HIV. Tagadere maintained that when other towns and cities had no support provision, Nottingham’s HIV positive community were fortunate to have choices of where to access their support.

 

Unfortunately, significant changes happened recently, including massive funding cuts; drastic changes to commissioning caused by abolishing Primary Care Trusts and putting testing and prevention into Local Authority hands.  New commissioners were in place at our Local Authorities which included commissioners for public health.


A new tender went out to start 2014 and Tagadere lost its meagre £10,000 funding to run the drop-in which, over a period of five years, had naturally evolved into a highly successful, well respected and in-demand local facility for people living with HIV.


Nottingham City Council made what was considered a half-hearted offer to part-fund the Tagadere drop-in albeit with a list of strict provisos:



This latter and alarming stipulation meant that Tagadere would have to engage in the illegal process of Positive Discrimination.  


It was felt that the warning ‘Resistance is futile’ was manifesting itself in what was perceived as a thinly disguised takeover proposal of a successful, local and most significantly, a voluntarily user-led HIV peer support group.


To their credit, Tagadere’s trustees unanimously decided not to sell out their user-led volunteer principles and to continue independently.  To have complied with the conditions would have meant that Tagadere would lose their identity, integrity and would be completely absorbed by THT within a year with the tragic result that Tagadere would become a footnote in the history of HIV support in Nottingham with the surmise that all achievements made as a user led volunteer run peer support group would be tick-boxed by THT and added to their own catalogue of imagined local accomplishments.


Tagadere are dedicated and passionate in voluntarily providing a user-led peer support resource for HIV positive people in Nottingham.  In the face of many obstacles it would be a simple reaction to give up, give in and hand it over.  However we truly believe in the practical, emotional and spiritual value of what we do and therefore giving up is not a consideration.


The Trustees of Tagadere will try their best to raise funds by applying to small local trusts, illustrating our unique points of being local, grassroots, volunteer-run and user led.  To generate a small level of income we organise an annual HIV awareness-raising World AIDS Day Craft Fair.


We have been interviewed on local radio and television and receive frequent requests from professional organisations for our HIV educational talks. Fortunately there are funders who will only fund small local groups in recognition of the value of community peer support.

 

Therefore, we here in Nottingham feel a lot of anguish and anxiety when we read about THT’s finances. We feel that those pay offs to the outgoing executives are offensive when we regularly encounter local people living with HIV who are on JSA sanctions and have to choose between using food banks or to starve.


It is hardly surprising that many local people living with HIV rely upon Tagadere for what is perhaps their one guaranteed hot nutritious meal each week which is shared in an environment of peer support. The fact that the THT Hardship Fund is even temporarily closed is shocking, especially given the tidal waves of money pouring in from celebrity events and large donors.

 

It has been reported to us that currently THT Nottingham has the following funding and staffing:

 



 

We understand that many people believe that this is an appropriate time for people living with HIV to raise questions about THT. Certainly, they have had a change in CEO so there could be changes ahead, but whether the new executives are prepared to put the needs of people living with HIV as an absolute priority is another issue - or are they now too busy planning an entire takeover of all sexual health clinics which get tendered out in the mass NHS sell off?


The need for an independent HIV peer support group is evidenced in Tagadere’s weekly attendance of 20-30 people who represent the culturally diverse communities of Nottingham living with HIV.  Our support and encouragement extends further than the weekly gatherings via telephone and e-mail.  We have supported many service users in their return to employment or further education studies and are frequently requested to give educational talks to a large cross-section of organisations.


The people who use Tagadere tell us that they feel wanted, comfortable and validated by gaining their support from Tagadere. They attribute this to the fact that we are a local group run by volunteers with shared personal experiences of living with HIV and whose only intent is to help and benefit other people in a similar situation


Nottingham’s expanding HIV population deserves an accessible and alternative HIV support structure.  Tagadere has been described by various professionals as ‘essential’; ‘indispensable’; ‘a significant resource for positive people’ and an ‘open supportive community


It is not implausible to say that Tagadere is a too well respected, cherished and needed independent resource to allow it to become consumed beneath the corporate characteristics of a larger organisation.


Therefore, when we are told that ‘resistance is futile’, we reply ‘Not here in Nottingham, because Tagadere means ‘together’.


Simon Smalley,

Trustee of Tagadere.




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