WE NEED PrEP ON THE NHS NOW SEPTEMBER 2018
A Community Statement
PrEP, or pre-exposure prophylaxis, is an HIV prevention method in which people who don’t have HIV take HIV medicine daily to reduce their risk of getting HIV if they are exposed to the virus. It provides protection to the many people who continue to be vulnerable to HIV, both in the UK and around the world. The drug has been proven to be cost effective when measured against the cost of lifelong HIV treatment and care.
A large-scale study of PrEP is taking place in England (the PrEP IMPACT trial). This has made PrEP available to some people on the NHS – but numbers on the trial were originally capped at just 10,000. Within only six months of this three-year trial commencing, many participating clinics had had to close to any further recruitment of gay and bisexual men. The result was many people were turned away from clinics who were in need of PrEP – some of them getting HIV as a result of not being able to access PrEP when they needed it.
By June 2018 over 7,000 people had been recruited and NHS England announced it was considering a proposal for a further 3,000 places to be made available on the trial. Whilst welcome, this provides only temporary relief. With continuing high demand for PrEP, clinics will again be full and turning people away within a few months. It is therefore not a sustainable solution.
We acknowledge some local successes of trial sites engaging with other groups who could benefit from PrEP, including trans people, BAME communities, women and heterosexual men. However in a national context there have been limited efforts to engage these populations. We therefore also believe there is a clear equalities deficit within the trial.
NHS England have committed to the provision of PrEP. With the trial only beginning in October 2017 and due to run for three years, we cannot wait until late 2020 to do something about the current situation. We need a national programme as soon as possible to ensure PrEP is made available to everyone in England who needs it.
A national PrEP programme will not only meet actual need but also provide welcome assurance to those currently accessing PrEP through the IMPACT trial that they will be able to continue to access PrEP once the trial ends.
NHS England and local authority commissioners must start the process now to ensure PrEP is routinely available in sexual health clinics by 1 April 2019 at the latest. Both NHS England and local authority commissioners should agree and disseminate as soon as possible a timetabled roadmap of the necessary decision-making process. In the meantime a solution must be found to ensure no one in need of PrEP is turned away.
There is nothing to prevent the trial continuing even whilst, in parallel, routine provision of PrEP begins. The trial is asking valuable questions and both interim analysis later in 2018 and then further results can inform ongoing planning decisions.
The numbers on the trial were in line with estimated projections of eligibility and demand for PrEP made by NHS England in its earlier planning. Now it has become clear that need and demand were significantly underestimated, NHS England must honour its commitment to commission PrEP in a national programme. The trial was never proposed by NHS England as a means to only partially meet need.
PrEP has to be planned by NHS England and local authorities working collaboratively. It will be as important for local authorities to plan the PrEP service to ensure it is integrated with other vital prevention and testing efforts, and is promoted to all those at risk of HIV, whether gay and bisexual men, trans people, BAME communities, women or heterosexual men.
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Greater Manchester is to join a global network of cities spearheading the fight against HIV.
- Historic signing of Paris Declaration at Manchester Pride launches city-region’s bid to become a Fast Track City
- Over £1 million committed to end the 300 new HIV transmissions in Greater Manchester every year
Greater Manchester is to join a global network of cities spearheading the fight against HIV.
Mayor of Greater Manchester Andy Burnham unveiled the plan for the city-region to become part of the Fast Track Cities network as he spoke at the Manchester Pride Candlelit Vigil, where thousands of people came together in Sackville Gardens to remember those lost to HIV and stand united against the challenges facing LGBT communities.
In launching the application, the Mayor set out the bold plan to end all new cases of HIV in Greater Manchester residents within 25 years.
Greater Manchester Health and Social Care Partnership, responsible for health and care devolution, is working with a broad network of communities and partners, to achieve this through a £1.3 million programme of targeted support for people living with HIV or most at risk.
Actions being introduced from later this year include:
- Encouraging the use of PrEP and PEP medication amongst the most at-risk groups, which has been proven to stop HIV in its tracks
- Establishing new peer-led services and support tailored to individual needs
- Substantially increasing screening and testing at home, in the community and through sexual health services
- Maximising prompt and effective treatment for those diagnosed; and
- Challenging stigmas and other social and cultural barriers that prevent people accessing testing and support.
- Further promoting and encouraging safer sex practices.
As a Fast Track City, Greater Manchester would join more than 250 others from across the globe to take combined action, share best practice and tackle discrimination. These cities typically have significant numbers of people living with HIV.
Across Greater Manchester, more than 5,650 people are thought to be living with HIV. The rate per thousand of the population is higher than the England average – in Manchester almost three times higher and in Salford almost double.
Almost 300 new HIV diagnoses are made every year in Greater Manchester. 44% of these come at a late stage, greatly increasing impacts to individuals’ lives, risks of onward transmission and costs of treatment. In addition, around 745 people are thought to be living with HIV but unaware of their positive status.
Mayor of Greater Manchester Andy Burnham said: “Ending all new cases of HIV in Greater Manchester within a generation is an ambitious goal – but we can do it. We are doing ground-breaking work in Greater Manchester to tackle HIV, and by joining Fast Track Cities we will be part of a global network of cities committed to ending HIV where we can share expertise and speak with a united worldwide voice.
“It also shows that we are taking a stand against stigma, instead standing shoulder to shoulder with people living with HIV.”
Lord Peter Smith, Chair of the Greater Manchester Health and Social Care Partnership said: “Although great progress has been made in the fight against HIV, there is still much to do – both around the world and across our city-region. Becoming a Fast Track City would be a great endorsement of our £1 million ambition to eliminate new cases of HIV in Greater Manchester within a generation, and an important step towards realising this vision”.
Eleanor Roaf, Trafford Council Interim Director of Public Health, Co-Chair of the Greater Manchester Sexual Health Network, said: “We are delighted to be joining the group of Fast Track Cities. Greater Manchester has a great track record in developing and delivering excellent sexual health services but there is still more to do. We still see too many people becoming infected with HIV, or not being diagnosed as early as they could be. Our existing investments, coupled with the extra funding and the Fast Track City status, gives us a real opportunity to address this.”
LGBT Foundation Deputy Chief Executive Rob Cookson, from the PaSH Partnership, said: “‘The desire to join Fast Track Cities is amazing news and supports Greater Manchester’s ambition to end all new transmissions of HIV within a generation. HIV is such an important issue for so many people. This now gives Greater Manchester the opportunity to create zero HIV infections and zero stigma’.
The Fast-Track Cities initiative is a partnership between high HIV burden cities worldwide and four core partners – the Joint United Nations Programme on HIV/AIDS (UNAIDS), International Association of Providers of AIDS Care (IAPAC), United Nations Human Settlement Programme (UN-Habitat), and the city of Paris.
The initiative was launched on World AIDS Day (1 December) 2014 with an initial 26 cities signing the Paris Declaration. Today, the Fast-Track Cities initiative currently has over 200 signatories – cities with a significant number of people living with HIV, among which a subset of cities, including London, is prioritized because progress in those cities could have an impact on national HIV epidemics. Collectively, the programme initiative seeks to galvanise action in and solidarity among cities across the world, sharing best practices and tackling stigma and discrimination. The current list of priority Fast-Track Cities is available atwww.iapac.org/cities.
Greater Manchester Health and Social Care Partnership is governed by the Health and Social Care Board, which meets regularly in public. The Partnership comprises the local authority and NHS organisations in Greater Manchester, representatives from primary care, NHS England, the voluntary, community and social enterprise sector, Healthwatch, Greater Manchester Police and the Fire and Rescue Service. In April 2016 we took responsibility for the £6 billion Greater Manchester health and social care budget. In addition we have responsibility for a £450 million transformation fund (over five years) to help make the changes needed to dramatically improve health and social care and make sure we can afford everything we will need to look after our population in the future. Follow us on Twitter, Facebook and visit usonline.
Greater Manchester Sexual Health Network aims to facilitate a greater profile and presence for all prevention, treatment and care services by improving clinical outcomes, patient experience and equality of access to all sexual health services. The Network is the UK’s first comprehensive Sexual Health Network and includes amongst others HIV, genito-urinary medicine, contraception, conception, teenage pregnancy and abortion services provided by the statutory, community and voluntary sectors. For more information seehttp://www.sexualhealthnetwork.co.uk
The Passionate about Sexual Health (PaSH) Partnership is a collaboration between BHA (Black Health Agency) for Equality, George House Trust, and the LGBT Foundation. The PaSH Partnership will deliver a comprehensive programme of interventions to meet the changing needs of people newly diagnosed with HIV, living longer term with HIV or at greatest risk of acquiring HIV. The Greater Manchester Sexual Health Improvement Programme (GMSHIP) will include HIV testing, access to low cost condoms, a dedicated sexual health website, HIV outreach, and support for adults and children newly diagnosed with HIV or living with HIV longer term. The PaSH Partnership believes the work it will deliver will be key to achieving Greater Manchester’s vision of ending HIV transmission within a generation. For more information seehttp://www.gmpash.org.uk
For futher information please go to https://www.gov.uk/government/statistics/hiv-annual-data-tables
Feedback from support groups …
“My life is not the same as when I came for the first time, I am happy now. This group is my home/family/sisters. BHA is my shoulder to cry on, my 999.”
“So helpful and eye opening. When I am here I don’t feel alone with this, but ultimately it allows me to let go of the anger and hate and feel accepted. You guys are legends. Cheers.”
“My support worker had a challenge to get through to an intelligent, intellectual, once career obsessed individual but with the help of that person and attending the weekly group meeting, fourteen years of neurosis and hidden emotions have been released. It’s not something that a referral to a counsellor from my GP would have achieved and my Doctor can add testament to that.”
“Since coming to PACT I have developed my knowledge and understanding of HIV, of developments in HIV care and treatments, on how to get the best results from my consultants appointments and boosted my confidence to a point it has not ever been since my diagnosis.”
“I am a 28 year old black African woman. I was diagnosed at 17, but told it was likely I had been positive since birth. It was a huge shock. I was introduced to Skyline, and met the women at Valour. I thought I was the only person in the UK with HIV, and that no one would accept me. They welcomed me like family, and later, when I had my baby boy, they treated me like their daughter. The support I have received via this group has saved my life, a life I now value more because I have my son to look after. I volunteer now at Skyline, and speak at World Aids Day events. I share my story because I hope it helps others. It is a good feeling giving back to my community what was given to me”.
“I was diagnosed in 2010 after falling ill, and not knowing why. I was so angry and confused, and also apprehensive about meeting new people. I was very worried about confidentiality. I eventually came in to the office and met a support worker. I immediately felt at ease, and became a regular. I started attending Valour, and everything fell into place. It has supported me emotionally in ways I really cannot begin to comprehend. I am very grateful for the service and would recommend it to anybody. I attended the volunteer training, and found it very empowering, it really helped give me my confidence back. I owe everything to Valour, and to Skyline. It’s been a safe haven for me, and without it and all the friends I have made, I would be alone”.
Feedback from 1-2-1 Support …
“You have supported me to cope with living with HIV”.
“I can say Skyline has empowered me to enjoy life again”.
“I enjoy meeting the staff and they are always kind and compassionate to me”.
“The support I have and always have received here is the best”.
“You have helped me with confidence and dealing with stress”.
“I think the service and workers are great”.
“Skyline has given me back my independence and I have gained so much knowledge in the time I have been with them”.
“I have become more stable and confident about life with the support you have given me”.
“I am now confident in my life now compared to when I first contacted you. This is a major achievement for me”.
“I feel very supported as I have been very unsettled since something bad happened to me. My support worker listens to me and never judges”.
“If I have a problem I come to you and you help me sort it out”.
“I am more stable and content with my life”.
“It has been a tough journey I have moved on from the worst but I am always happier at Skyline”.
“BHA gives me a space to acknowledge I am HIV positive and a chance to meet with others”.
“Knowing I have someone to call on to help me is all the support I need. BHA gives me this”.
“As and when I have struggled with certain issues I have been able to call and have the support and the space to think and talk over things that are to personal or complex to discuss openly in my other support networks”.
“Thanks to you all for your warmth, compassion and support through the year. You have given me a safe welcoming refuge and the support you all give is life changing.”
“This group is safe and welcoming. I would recommend to anyone that PACT is good and welcoming to people whose first language is not English.”
“I need to be at PACT to get some balance of my negative thoughts.”
“The men are my sounding board and a positive influence on me.”
“I need to hear what other men think about my situation so I don’t get depressed.”
“Sindi”, 17, began attending Together 4 Life in March 2015. She was missing clinic appointments, but said she had no problems taking her medication, and no concerns about her health. At this point however, her viral load was 44,000, indicating that her adherence must have been poor. Despite not attending clinic, Sindi continued attending T4L. At the careers session, she spoke openly about studying health and social care at college and wanting to become a midwife. She had concerns that her HIV status would prevent this happening, and was already starting to impose restrictions on herself in terms of her future success. Sindi was made aware that this career was still well within her reach, in spite of her status. She could achieve all her goals and have the career she wanted by controlling her HIV rather than the HIV controlling her. She seemed surprised that she would be able become a midwife, having previously confessed to the group how she felt she had “let herself down” in terms of adherence. After a few sessions at T4L, she began attending all her clinic appointments and having honest discussions with her clinicians about the challenges she was facing at home which had interrupted her adherence. Over time, there was a reduction in her viral load, and this has now reached the target of undetectable. Her physical health has improved considerably as a result, as has her mental health.
In March 2016, we ran a session on treatment and adherence. A true testament to the tangible benefits of T4L, Sindi asked if she could speak at the group and share her own experiences. She wanted to show empathy to others and help them learn to manage their own regimes in a way that worked for them. She was proactive, inspiring and immensely proud of herself for turning such a corner, one that would certainly have impacted negatively on her life had she not had the support of the group at this stage.
Sindi has become a role model for the group, and it is a pleasure to see her gently encouraging the younger members to take control of their own health. She ensures every person in the group never forgets that if you stay well, HIV does not need to get in the way of you pursuing you dreams.
It’s a powerful message, made all the more powerful by the voice which is delivering it. Sindi is an asset to the group and a credit to herself. She is also the perfect example of the cycle of support T4L brings. Helping YP to learn, grow and begin to help others who are experiencing the same struggles.
Feedback from our prostate cancer training …
‘It makes me proud to be part of this training day and see so many like-minded Black men around this table here at BHA. ‘I wasn’t going to attend the session today as I didn’t know what to expect but I am so glad I did. I learnt a lot and it was good to talk to men who have been diagnosed with prostate cancer and hear their experiences.”Thanks again for inviting me to the training. I enjoyed myself and found it very informative. Can’t wait for my first gig.’
Feedback from our cancer focus groups …
‘The session on mental well-being and cancer was well organised and well attended. Something like this needs to be organised quarterly’.’ It was interesting and enjoyable – keep it up’.’ Thanks for this kind of service especially for BME. We need more of these sessions. The session has been brilliant!!’
What it’s like to be a volunteer?
To be a volunteer at BHA gives you a feeling you’re part of something big which is there solely to help people from all walks of life to better themselves & give them a helping hand when they’re in need. The work is varied and can be tuned around your skills, predilection and hours.
I jointly volunteer delivering the Positive Self-Management Programme that supports others how to cope better living with HIV and possible other long-term health conditions. I’ve learned a lot from BHA in terms of sexual health knowledge, the types of discrimination & other health issues people face as well as my own personal development. They are also very understanding when I feel not well enough or have other things preventing me from coming in.
What do I get from it?
I get a warm feeling like no other when I’m helping others. It boosts my mood and self-esteem to know I’m doing something good. I learn a lot and have certainly improved my mental health by volunteering with them. I’ve especially noticed my social skills get better as well as making some new friends. I also get a great feeling of achievement when something I’ve helped in or suggested has been implemented or goes really well.
What it’s like to be a volunteer?
As a volunteer you are part of a vital and valued part of the BHA Skyline team. There are many diverse opportunities which I have been involved with in my 8 years as a volunteer. I got involved with Skyline because it is a good cause and I know many people living with or affected by HIV. I have been involved in admin/reception support, the young people’s group and fund-raising. I also volunteer with the Prevention service-outreach within African communities and HIV testing.
One of the recent events which I enjoyed helping with was the International Day Against Homophobia, Biphobia and Transphobia (IDAHOBiT) arranged by Leeds City Council. The Engagement Planning Group has planned activities at several events in Leeds which include Beeston Festival in June, Leeds Pride and Leeds Black Music Festival 2016 in August.
What do I get from it?
My own life has been improved since being involved with BHA as a volunteer and you get lots of experience. I would encourage others to get involved because it helps your confidence and self-esteem, but also gives you experience if you want to go back to work. One of my greatest achievements in my time as a volunteer is winning’ Best Volunteer’ 5 times from the LGBT Awards in Leeds.
What it’s like to be a volunteer?
After years of procrastination this is the first time I have volunteered for a charity (unless it was to blag myself a free festival ticket). I wish I had done this sooner. I feel like I’m part of a big family, one that is full of love and a lot less bickering!
What do I get from it?
I have felt truly humbled by some of the stories that I’ve heard. Being a part of BHA helps me to think about and resolve some of the issues in my life whilst using my life experience to try and help others. It’s just as exciting meeting a young person who wants sexual health advice for the first time as it is having a discussion with someone older who needs love and support.
What it’s like to be a volunteer?
Being a volunteer with BHA is multi-faceted and offers a depth of hands-on experience into the daily machinations of how a much needed and loved charitable organisation runs, and a good insight into how diverse a field HIV is. You get to work with a committed and talented team of staff and volunteers from diverse backgrounds that make it an interesting place and have a real international feel. There are opportunities to contribute to the exciting work of the prevention and support elements of the work as well as helping with the more administrative tasks that help to keep a wonderful space for service users, volunteers and staff alike. Volunteers are very much appreciated and valued and are rewarded for their contribution.
What do I get from it?
I have gained a very valuable understanding of how HIV-related work is done on the ground and at a grass-roots level. It is heartening and life-affirming to see how service users appreciate everyone’s efforts and it is very much a community. Volunteering greatly enhances interpersonal skills because you are involved with interacting with a diverse group of people at all levels. There are opportunities here to get further training too, such as in Human Rights which has been a real eye-opener. I am very fond of BHA, and there is nowhere quite like it!
What is it like to be a volunteer?
Since 2009, I’ve been a volunteer for BHA for Equality. I manage the food distribution program called the Fareshare Project. This project aims to lessen the struggles faced by those affected by HIV and experiencing financial hardship. My key responsibilities include distributing food, maintaining records and creating a friendly and peaceful environment for the service users. Fareshare Fridays is a wonderful opportunity for people to come together in a safe place to socialize and seek comfort and support in one another. It’s not just about the food. It’s about the camaraderie. From time to time, I also help out in other areas. I assist the sexual health team with preparing condom packs and leaflets. I participate in setup and breakdown of large events. I also help raise HIV awareness.
What do I get from it?
I really enjoyed all aspects of the work I do for BHA. Volunteering for BHA has given me the opportunity to build on my skills, learn new ones and meet new people. It has given me the chance to push myself beyond my comfort zone and grow as a person. It has also helped me form lifelong friendships and support.
I would recommend volunteering at BHA to anyone who is looking for an ‘off the beaten path’ type of volunteer work. No day is the same. With every day and assignment given comes a new set of challenges to overcome and it feels fantastic to look back and see all that has been accomplished.
I have worked in advertising for over 20 years, developing strategic plans and creative ideas for major commercial brands. In the last decade, my focus shifted to the marketing needs of the non-profit sector, helping them develop and implement social marketing campaigns for communities in Zambia, Malawi and Zimbabwe. I have now embarked on a long-term research programme to aid the design and evaluation of behaviour change interventions that help governments address society’s major questions.
As a Chartered Director, a Fellow of the Institute of Directors and an ardent researcher, I am keen to promote the BHA’s mission; to learn about and contribute to interventions to reduce risks for minority groups, and to support BHA’s staff, volunteers and trustees.
My interest in working with the BHA stems from my interest in public duty and social responsibility. I hail from Lebanon and Palestine where I was involved in some small way in helping educate Palestinian refugee children, and help internally displaced people during the Israeli invasion of Lebanon (1982). Even with NHS being a national treasure and something to be proud of, provision of high quality care and services still depends on knowledge and access to information. Other prerequisite skills sets are also needed that may not be available to vulnerable and disadvantaged groups. The BHA is there to plug these gaps which is a major incentive to work here.
I make my living in creating, managing, manipulating and providing access to mapping data. I have a particular interest in the creation of Spatial Data Infrastructures to help meet the UN Sustainable Development Goals for countries with little or no infrastructure.
On the Board experience level I was an elected member of the Board of the University of Manchester between 2007 and 2010. I had particular interest in Risk Management. This stint coincided with adding a fourth degree to my collection of Higher Education degrees, this time an MBA from the University of Manchester. My other degrees are in Civil (Bachelor and Masters) and Geomatics Engineering PhD (UCL). I was also the founding member of a couple of commercial companies one of which is now a successful small business in the field of Geomatics.
I am also the Treasurer and Pensions officer of the University of Manchester Universities and Colleges Union, since 2010.
Anna is a highly experienced public health specialist with extensive knowledge of population health qualified to Master’s level.
She has a wide reaching understanding of public sector working having started off her career in the NHS in Birmingham and has spent over a decade within various Greater Manchester Local Authorities. Across her career path, Anna has worked in a number of community health development roles for provider and commissioner services and as such, has developed a thorough understanding of community needs and is passionate about reducing health inequalities.
Anna currently works for Oldham Council Public Health with strategic and programme management responsibilities for a wide reaching portfolio of work including integrated health and social care, healthy living primary care, health and employment and lifestyle services.