Category Archives: TLAP

Being positive about being positive

Often when we talk about HIV today we forget that for many people and communities, stigma is real. It’s still affecting people and their communities. Moreover, stigma is a tricky little beast; good at hiding.

Throughout the many years that we’ve been challenging these acts of disability-related hate crimes, it seems that many people have not been educated or exposed to the 21st century facts about living with HIV.

This is where stigma gets its mojo – when people perpetrate unkind acts that negatively affect others.

The global management of HIV is one reason people have told me why they haven’t felt able to take a test to find out their status. Their fear of a positive diagnosis, even within the UK where we have the Equalities Act and a strong evidence-based community, stems from personal fear.

Among the many labels out there, we now have another label for people –‘undetectable’. But for me, positive is positive and I ignore the medical narratives of infectious and undetectable.

Labels don’t help anyone manage the challenges of living with HIV – the label fuels the stigma. So, my view is that I’m being positive about being positive.

Too many of our brothers and sisters have poor health as well as psychological and mental ill-health issues related to that stigma.

Stigma is real and tangible to many of us, and I’m fed up with people feeding stigma with its trite treats of denial and apathy. Saying “times have changed” is a main course to stigma.

Walk in my shoes for a day and you would see things haven’t really changed. Intersectionality, the overlapping of discrimination, has an unpleasantly close relationship with HIV.

You could serve a smor- gasbord of HIV + poverty + BME + women + LGBTQ + groups that are so under the radar they are barely mentioned by the system.  These groups are stigmatised and living with stigma on a daily basis.

How can we really make a difference? It’s been over 30 years since the epidemic started affecting so many communities. I want to say to the world that we need to eradicate stigma with kindness and openness.

To mark last year’s World AIDS Day 2016, I set out to take steps towards reaching this goal. I went to Trafalgar Square to ask strangers to give me a hug with the tantalising invitation ‘Hug me, I’m HIV positive.’

I truly believe what a real grass-roots activist once told me – “Stigma kills, not the virus.” The late Elizabeth Taylor said, “It’s bad enough people are dying of AIDS, but nobody should die of ignorance.”

That’s why I’m positive about being positive. Maybe the global route won’t reach enough people so we need to make this battle against stigma and ignorance personal. So let’s tackle it, one person at a time, and leave a very nasty taste in stigma’s mouth by spreading knowledge, experience, hope and hugs.

This year has been all about supporting people to access the facts about HIV, to break the myths, and on Saturday December 2nd my Forest Gate Pride Committee took part in a community initiative to do just that and also to share a few hugs.

 

Isaac Samuels, member of Think Local Act Personal’s National Co-production Advisory Group (NCAG)

National network calls for more ‘asset-based areas’ to transform communities and services

You can focus on what’s wrong with someone in terms of their health and social care but what if you focus on what’s ‘right’? A national network of community practitioners calls for all public sector professionals and commissioners to work with people’s ‘assets’ rather than their ‘deficits’ if they are to build strong communities and sustainable public services, according to a briefing published today.

The briefing gives a compelling case for why asset-based approaches should be the basis of all local area planning and service delivery and follows on from the launch of Engaging and Empowering communities in 2016, which gained support from national leaders, including NHS England CE Simon Stevens.

The Asset–Based Area briefing was compiled by Alex Fox, CE Shared Lives Plus and Chair of the Building Community Capacity network, hosted by Think Local Act Personal (TLAP), which is leading the way.

In it, Fox and the network offer practical guidance with a description of the ten features of an ‘asset-based area’ that nurtures people’s wellbeing, resilience and influence so that they become equal partners, not passive recipients to the organisations and people who respond to their needs. They also suggest a number of planning and support models that use asset-based thinking and have been operating for years in different areas and with differing degrees of take up and success -models ranging from Homeshare schemes, dementia friendly communities, Time-banking and others.

Alex Fox OBE, Chief Executive of Shared Lives Plus, said:

“During this period where there’s huge pressure on money available to local areas it is more important than ever that every area can find value and build the full range of resources and assets that could be available to it. This would require leaders and decision makers to see their role as working with, not for, people. Working in co-production with people with health and care needs is at the heart of all asset-based methods”.

Clenton Farquharson MBE, Chair of Think Local Act Personal board, said:

“I have nearly 15 years’ experience of arranging my own support and employ a Personal Assistant who enables me to live a full and active life including spending time with family and running a Disabled People’s User Led organisation called Community Navigator Service CIC, besides other interests and ambitions. I don’t want to be part of the lucky few, I want more people to be supported and facilitated to live the type of life I enjoy”

Angela Boyle, Head of Programmes, Coalition for Collaborative Care, said:

“There is clear evidence that building asset-based areas works. By bringing together people and organisations we can nurture stronger, healthier communities. This paper supports community leaders with practical tools and models to effectively utilise the powerful assets that already exist in their communities for improved health and wellbeing”

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Engaging and Empowering Communities

I was delighted to speak at the November 2016 launch of Engaging and Empowering Communities: A Shared Commitment and Call to Action – an initiative headed up by Think Local Act Personal (TLAP) but co-authored by the Coalition for Collaborative Care, the Association of Directors of Adult Social Services, the Local Government Association, Public Health England, the Association of Directors of Public Health, the Department of Health and NHS England.

The document is a sector-wide commitment to developing and nurturing strong communities, something very close to our hearts in C4CC.  We know that things need to change- councils, clinical commissioning groups and doctors can’t ‘prescribe’ wellbeing- it comes from having friends, family, social contact and support, being able to get out and about, having the opportunity to do something for others and feeling valued for our contributions through paid and unpaid work or being part of a group.

With our partners, the Coalition for Collaborative Care wants to see a shift away from ‘What’s the matter with you?’ to ‘What matters to you?’ by local people and organisations coming together to nurture and build on the assets in local communities, reducing loneliness and social isolation, increasing community resilience and enabling people to take control of managing their  health.

This is something very personal to me as chair of my local Timebank in Reading, covering a diverse and thriving community in the Oxford Road area of the town. I have seen powerful examples of how the Timebanking model keeps previously isolated people, often people with multiple medical conditions, connected to others in their community in a positive way.  From what we know about the work carried out by C4CC partners Timebanking UK and Spice we know that people are likely to be less reliant on health services and more expensive interventions as a result of their involvement in community activity.  See the London School of Economics report that I was involved in, and Spice’s recent impact assessment here.

Whether through Timebanking or other innovative approaches, we need to drive forward on this agenda, particularly at a time when resources are stretched in the public sector.  It’s therefore fantastic that national sector leaders have been prepared to sign up for a paradigm shift in how we support citizens, families, people, to live happy and healthy lives.

Another key landmark, was this week’s publication of the conclusions of the Realising the Value (RTV) programme, undertaken by Nesta and the Health Foundation and funded by NHS England.

This builds the evidence base for person and community-centred approaches to health and wellbeing and how they can be developed across the country.

To quote from its key findings:  “The most successful examples of person – and community-centred approaches in practice are those that are developed by people and communities, working with and alongside commissioners and policymakers to build on existing assets and co-produce solutions that work.”

I hope that health professionals, providers, commissioners and those in charge of implementing local Sustainability and Transformation Plans will read the report and take on board its 10 key actions, and work with local authorities, the voluntary sector and local people to make the fine aims in our shared commitment happen in reality.