November 2016
Welcome to the ebulletin Welcome to the November edition of the Public Health Network Cymru ebulletin. This month’s spotlight topic is HIV and AIDS. World AIDS Day is held on 1 December each year and is an opportunity for people worldwide to unite in the fight against HIV, show their support for people living with HIV and to commemorate people who have died. World AIDS Day was the first ever global health day, held for the first time in 1988. Advisory Group member, Aderinola Omole, talks to us about her areas of expertise and what she feels are the main challenges facing us in addressing HIV and AIDS here in Wales. We have a Research in Wales Showcase event taking place on 2 March 2017 at University of South Wales, Cardiff Atrium. We have a conference planned for 15 March 2017 focusing on Adverse Childhood Experiences (ACEs) which will be held at Cardiff City Stadium. Finally if you have any news or event items that you would like to see included in next month’s issue please email publichealth.network@wales.nhs.uk
www.publichealthnetwork.cymru @PHNetworkcymru
/publichealthnetworkcymru
Knowing Our S
Status in Wales Spotlight on HIV/AIDs
This month’s ebulletin focuses on HIV and AIDS. Over 100,000 people are living with HIV in the UK. Globally there are an estimated 34 million people who have the virus. Despite the virus only being identified in 1984, more than 35 million people have died of HIV or AIDS, making it one of the most destructive pandemics in history. Today, scientific advances have been made in HIV treatment, there are laws to protect people living with HIV and we understand so much more about the condition. Despite this, each year in the UK around 6,000 people are diagnosed with HIV, people do not know the facts about how to protect themselves and others, and stigma and discrimination remain a reality for many people living with the condition. World AIDS Day is important because it reminds the public and Government that HIV has not gone away – there is still a vital need to raise money, increase awareness, fight prejudice and improve education. Although World AIDS Day is a great opportunity to talk about HIV, it is important to keep the momentum going all year round. More information can be found here https://www.worldaidsday.org/
Leaving HIV Stigma in the Past Kat Smithson from NAT looks at what we know about HIV stigma in Wales and the role of World AIDS Day in raising the profile of HIV and supporting us to address this stigma. Although HIV treatment and prevention are so much better than they were 30 years ago, public attitudes have not progressed as far or as fast. In Wales the numbers of people accessing care for HIV continue to rise; 168 people were newly diagnosed in 2015. We need to make sure that these people don’t continue to be negatively affected by the stigma which has hitherto been linked with HIV. Stigma negatively affects well-being, can prevent people living with HIV from accessing treatment, and can stop other people from getting an HIV test. There’s no easy way to tackle this. But once a year World AIDS Day offers us the opportunity to shine a light on HIV and the associated stigma, to consider our responses to it and to open up discourse on it. Public knowledge on HIV needs to improve World AIDS Day, which started in the UK in 1988, was actually the first international health day and the attention it throws on HIV is a great opportunity to improve public knowledge. In 2014 NAT commissioned Ipsos MORI to survey of the general public’s knowledge and attitudes on HIV. Encouragingly, a higher proportion (82%) of people in Wales could identify all correct routes of transmission from a list, compared to the British public as a whole (65%). But overall, only 45% of the British public could correctly identify all correct routes of HIV transmission, without misidentifying any incorrect routes. 16% thought that HIV could be passed on through kissing. Such misunderstandings about HIV are often considered a driving factor in stigma. People living with HIV need support to deal with the impact of stigma The same survey also showed that there is still a significant minority of people who hold negative attitudes towards HIV. Again encouragingly, in Wales people generally showed more supportive attitudes. 62% of people in Wales agreed with the statement ‘if someone in my family told me they were HIV positive it would not damage my relationship with them’, compared with 49% across the UK. But that’s 38% of people in Wales who either said that their relationship with a family member would be damaged by disclosure of HIV, or who aren’t sure. This has grave implications for those potentially affected. One of the clearest manifestations of stigma is how it makes individuals feel about themselves. In a 2015 survey of people living with HIV (the UK Stigma Index), half of the participants in Wales reported feelings of internalised stigma. And as one woman said: “People’s reactions reflect how you feel about yourself when you tell them.” At the same time vital support for people living with HIV is diminishing due to Government budget cuts. According to the UK Stigma index people living with HIV in Wales are less likely to access support from a local HIV support organisation or from elsewhere, despite the responses suggesting similar levels of need to the rest of the UK. Stigma in healthcare settings is still an issue A commonly reported location of experienced HIV stigma is in healthcare settings. Although most respondents had told their GP about their HIV, 37% still felt worried about being treated differently and 22% had avoided treatment or care. The implications of this are devastating as people living with HIV do not feel safe seeking medical care. It may also be discouraging people from seeking or being offered an HIV test. For World AIDS Day 2016 NAT’s (National AIDS Trust) campaign was all about leaving things that belong in the past, in the past. Stigma, and the misunderstanding and negative attitudes that feed it, is one of these things. Playing on society’s huge love for all things vintage, we wanted to remind people that not all things from the 80s and 90s should be celebrated as retro. HIV stigma is not retro, it’s just wrong.
Of course this message only scratches the surface; it’s about starting conversations about HIV with new people and getting them to find out more. However, we need to make the most of the interest that World AIDS Day generates in HIV and ensure that it can lead to lasting change in settings where people experience stigma, such as healthcare. In Wales the evidence indicates that there is a role in enhancing the level of support for people living with HIV, inside and outside of healthcare. If we are to get serious about leaving stigma in the past, we need investment in such services and a commitment to enhance levels of knowledge beyond World AIDS Day. www.nat.org.uk www.worldaidsday.org #HIVnotretro
HIV in Wales Just as it is crucial for a person to know their HIV status, it is also of great importance to us, as public health practitioners, to know the current data about HIV in Wales. This can not only help us with service delivery to people living with HIV, but also tells us how and where to direct our HIV prevention efforts. In this article, I highlight some of the key current data and trends related to HIV in Wales. Trends in Diagnoses There has been a steady increase in the number of people living with HIV in Wales, reflecting both an increase in survival and new diagnoses. On average, over the last six reporting years (2010-2015) , there have been approximately 153 new cases diagnosed annually. The vast majority of infections diagnosed in Wales are sexually transmitted with 47.5% of new diagnoses since 2011 being attributed to men who have sex with men (MSM) whilst 31.6% of infections are recorded as acquired through heterosexual contact. Whilst these infections have been diagnosed in Wales it may, in many cases, not be the probable country of infection. HIV Testing Having HIV is one thing, but knowing that you have it in the first place is fundamental, for it is only after being diagnosed that a patient can begin the life-long journey that is treatment, and in turn prevent the further transmission of the infection to others. That is why it is good to see that the latest annual figures (2014) for HIV testing in Wales show that the number of HIV tests carried out has increased steadily over the last decade. We can see from quarterly reporting data that testing rates remain stable into 2016. Life-long condition, life-long care It is nearly thirty years since the memorable health promotion campaign calling on people to not ‘die of ignorance’, and in that time, major strides have been taken to advance HIV/AIDS from a life-limiting infection to a life-long condition. Unquestionably, being diagnosed as HIV positive has a profound impact upon a person’s life, though people diagnosed promptly are less likely to experience morbidity associated with HIV, are likely to respond better to treatment and to achieve a suppressed viral load more swiftly. A study has estimated the average lifetime cost of HIV care in the UK as £360,800, based on a median life expectancy of 71.5 years, with the largest proportion of these costs (68%) attributable to the antiretroviral drugs used to treat a person . The future of HIV prevention? The major development on the horizon for HIV prevention is the provision of Pre-Exposure Prophylaxis (PrEP). PrEP involves giving people who don’t have HIV medication traditionally used to treat HIV. Using HIV treatment as a preventive measure has emerged as a potential new strategy for HIV prevention, with clinical trials undertaken to ascertain effectiveness amongst high-risk populations. Studies have shown this approach to be around 86% effective in reducing HIV risk. Public Health Wales has recently convened an independent HIV Expert Group (HIVEG) to look at the potential for PrEP provision in Wales – the report from this work has recently been submitted to Welsh Government, who will look into our report, and a review on clinical effectiveness of PrEP from the All Wales Medicines Strategy Group, as they consider whether PrEP is a viable option for HIV prevention amongst high-risk population groups in Wales. Public Health Network Cymru will of course keep members up-to-date on developments related to this, and all other HIV prevention developments, through the coming months and years.
MEDFASH Farewell MEDFASH’s Chief Executive, Ruth Lowbury, considers the challenges faced by small charitable organisations in securing new and sustainable income streams in an increasingly competitive funding environment and in a sector that is being squeezed. She also reflects on the many ways in which MEDFASH has collaborated with others to influence policy and practice over the years and ultimately benefit people living with HIV and those with other sexual health related needs. Written by Ruth Lowbury, Chief Executive, MEDFASH MEDFASH is to close at the end of December after almost 30 years of supporting policy-makers and professionals to combat HIV and improve sexual healthcare. We have played a role that is not quite like that of any other organisation in our field and we have punched above our weight. So I write this final eFeature with a mixture of sadness, pride and gratitude. MEDFASH is needed as much as ever, but we have reached the point where our income is too unpredictable and cannot be relied on to cover our costs. We have been fortunate to receive a varied range of project funding but in recent years have had to become almost solely dependent on this because of the phasing out of most core funding opportunities. Yet project funding, especially in these times of austerity, is insufficient to cover the costs of all the non-project functions that enable the organisation to exist (rent, utilities, equipment, website, staff training, accounts, board meetings and so on). The disappearance of core funding is not the only challenge increasingly faced by smaller charities such as MEDFASH: • Cuts in public sector commissioning are driving more charities to compete for the limited charitable grants available, while the funds disbursed by those schemes have shrunk. With lower odds of succeeding, and a chance that successful bidders will be awarded less than requested, the opportunity costs of bidding can be too great. • Likewise, with competitive tendering for service contracts, which has become more frequent, the cost of staff time to develop detailed proposals that may not succeed can be too big a burden. • The priority given by many funders to innovation makes it harder and more time-consuming to secure funding for established projects, even when they are highly evaluated by stakeholders. • Delivering products and services of high quality has real costs, regardless of who is delivering them, yet some funders expect services provided by a charity to be unrealistically cheap. As a small organisation, there can be little leverage for negotiation. • Funders often set a low limit for overheads on project budgets - around 5% - or even exclude them altogether. This compares to the 40% or more which is often applied by large academic and public sector bodies to their projects. • The outputs of completed projects, such as publications, may still need investment in updating and dissemination over the years when funding has ceased, but capacity for this in a small organisation can be hard to find. • With a very small staff team there is limited capacity for ongoing fundraising. • Lastly, while work such as ours on policy and professional education is important, it is less appealing than direct service provision to most funders and will not attract sponsorship or donations from the general public. These challenges have been growing, and I hope the current House of Lords ad hoc Select Committee on sustaining the charity sector will be looking into them. They apply to all charities but are particularly acute for the smaller ones. However, despite the challenges, MEDFASH has continued until now to deliver a range of valuable work and to have an impact across the HIV and sexual health sector. Most of our projects have relied on collaboration with others, either through formal partnerships or the engagement of individuals and organisations on working groups and advisory groups. MEDFASH outputs, such as service standards, have been notable for the endorsement of a wide range of stakeholders. We have always prioritised gaining such backing as a way to enhance our impact on practice and policy. We could not have achieved such impact without the goodwill and freely-offered time of so many expert and committed people. Drawing on such resources brings a value that no amount of fundraising could replace.
Over the years, MEDFASH has influenced policy and practice in a number of key areas, from our earliest days as The BMA Foundation for AIDS, offering an enlightened medical voice on AIDS at a time of ignorance, fear and stigma among the public and the medical profession, through a decade of major projects supporting implementation of the 2001 national strategy for sexual health and HIV, to the more recent development of guidance and case studies on commissioning in the wake of the structural changes arising from the Health and Social Care Act 2012. Despite its diversity, some common threads have run through our work. Firstly, a focus on improving and standardising HIV and sexual health service provision. The standards we have developed (some with partners) for NHS HIV services, sexual health services, management of STIs, and psychological support for people living with HIV have all focused on the pathway of the person in need of care, and the quality of the care they should receive regardless of who provides it. The three-year national review of GUM services played a major role in helping services to modernise and achieve dramatic reductions in waiting times (from over 4 weeks in places to 48 hours almost everywhere). Key to the standards and the GUM review was an emphasis on a multidisciplinary approach, never more important than now. Secondly, a commitment to improving rates of HIV diagnosis to enable more people to access life-saving treatment early. In the 1990s, after effective antiretroviral therapy became available, we produced a booklet encouraging healthcare professionals to recommend HIV testing to their patients without the need for lengthy counselling. This approach is now part of national testing guidelines and widely accepted, but at the time it was groundbreaking and controversial. Our booklets for general practice and secondary care, now in their third and second editions respectively, and our online educational tool for GPs have emphasised the important role of non-HIV specialists in diagnosing HIV. Most recently, as a partner in the EU-funded OptTEST project, we have been developing tools to support indicator condition-guided HIV testing across Europe. Thirdly, an emphasis on encouraging strategic leadership and collaboration to drive improvement. Prioritising sexual health as a key public health issue, clearer accountability at local, regional and national levels and building strategic partnerships between NHS and local government were key elements in our review of the national strategy for sexual health and HIV back in 2008. While the report was of its time, it is tempting to say ‘plus ça change’ - so much of this still seems incredibly relevant in the context of fragmented commissioning arrangements and the advent of Sustainability and Transformation Plans. This eBulletin was initiated in 2012 as a short-term source of information on policy for commissioners and providers during the ‘transition’ - it is telling that in 2015, readers valued it even more highly than in 2013. For each of these threads, we have achieved much but a great deal more remains to be done. It is sad that MEDFASH will no longer be a part of this, but we are grateful that our ongoing projects and outputs will be taken over by other organisations: • this Sexual Health & HIV Policy eBulletin by the Faculty for Sexual and Reproductive Healthcare, as well as HIV TIPs, our online educational tool on HIV testing for general practice • the Sexual Health & HIV Policy EUROBulletin by NAM aidsmap • our booklets HIV in primary care and HIV for non-HIV specialists by the British HIV Association • forthcoming pdf versions of these two booklets for a European audience by JUSTRI. Many thanks to these organisations for picking up the baton, but also thank you to the many individuals and other organisations too numerous to mention who have worked with us and enabled our achievements, to all the funders who have made our work and our existence possible for almost 30 years, to the MEDFASH staff, project consultants and trustees who have brought such high quality standards to our work, and finally to all of you who have read our publications or participated in our events and used these to inform or change your practice for the benefit of people living with HIV and those with other sexual health and HIV-related needs. Make sure you receive future issues of the Sexual Health & HIV Policy eBulletin from FSRH by subscribing here.
I HAVEN’T GOT TIME FOR AN HIV TEST. BUT THE NEW FINGER PRICK RAPID HIV TEST GIVES YOU RESULTS IN JUST 20 MINUTES.
YOUR NEAREST
CLINIC IS:
Terrence Higgins Trust, Swansea The YMCA 1, The Kingsway, Swansea. SA1 5JQ Every Thursday 5.30pm-7pm. Tel: 01792 477 540
Terrence Higgins Trust is a registered charity in England and Wales (reg no. 288527) and in Scotland (SC039986). Ref: 1694701.
I HAVEN’T GOT TIME FOR AN HIV TEST. BUT THE NEW FINGER PRICK RAPID HIV TEST GIVES YOU RESULTS IN JUST 20 MINUTES.
YOUR NEAREST
CLINIC IS:
Terrence Higgins Trust, Cardiff First Saturday of the month 11am-3pm & every Tuesday 6pm-8pm. Tel: 02920 666 465 for details
Terrence Higgins Trust is a registered charity in England and Wales (reg no. 288527) and in Scotland (SC039986). Ref: 1694701.
On The Spot This month we have Public Health Network Cymru Advisory Group member Aderinola Omole on the spot. Aderinola works for Terrence Higgins Trust as a Sexual and Reproductive Health Specialist.
What is your area of expertise?
I am a Sexual and Reproductive Health Specialist, Particularly, HIV and sexually transmitted infections/blood borne viruses among ethnic minorities, women and young people.
Why did you join the PHNC Advisory Group?
I joined because I am passionate about what I do and how I can be a bigger voice through the forum in promoting good sexual health. In addition, I wanted to be able to learn new insights from other members of the group particularly in areas where approach may differ and still yield positive results
What do you perceive the challenges will be for the Advisory Group?
The greatest challenges for the Advisory Group are improving reach within both the wider public and the various agencies that can influence wellbeing. This includes not only staff working in a range of statutory and non-statutory services but employers, the media, faith communities and other community groups. A well informed public and service system committed to enhancing wellbeing is essential but remains a challenge to achieve.
This month’s e-bulletin spotlights HIV and AIDS, what do you think are the main challenges facing us in addressing HIV and AIDS here in Wales?
HIV-related stigma and discrimination, coupled with lack of knowledge around HIV routes of transmission. Encouraging people to test for HIV is another challenge and helping young people to understand that being on ‘the pill’ is not the same as preventing HIV or any STI for that matter. Furthermore, because the ethnic minority community is quite small, a number of people don’t want to be seen going into an organisation known for supporting people living with HIV because it stigmatises them.
What tips would you give our members to actively promote AIDS Awarness?
Encourage testing as currently 1 in 6 people living with HIV are undiagnosed and unaware they are living with the virus. Testing for HIV puts you in control and, thanks to treatment, will stop you from getting seriously ill, enable you to live a normal lifespan and prevent you from passing the virus on to anyone else. Wear a red ribbon in support of people living with HIV or affected by AIDS. You can text RIBBON to 70707 to donate £1 to Terrence Higgins Trust and get a free red ribbon. Help to destigmatise and normalise HIV. This World AIDS Day 2016, our National theme at Terrence Higgins Trust is ‘Its not over’. We are encouraging everyone to support people living with HIV by challenging HIV-related stigma and helping them recognise that they are not alone. We’re still fighting, still caring and still wearing our red ribbon with pride. We won’t forget, and we won’t give up. The HIV epidemic is not over – but with your help, it could be!
If you were granted 3 wishes what would they be? 1. 2. 3.
To see Sex and Relationships Education (SRE) integrated into the school curriculum and getting teachers trained to be able to deliver it comfortably and appropriately. To reduce the stigma around HIV and possibly find a cure because the stigma is what is killing now and not AIDS. GwenTo be able to play the drums perfectly.
What are your personal interests? Cooking, Board games and Networking
The Grapevine This section of the ebulletin is dedicated to news from the network members. You can submit news on the work being undertaken in your area, write us an article, showcase an upcoming project or show off your achievements! If you would like to submit an article for the Grapevine, please email publichealth.network@wales.nhs.uk The article should be no longer than 500 words and pictures are always welcome!
Adverse Childhood Experiences report published A new report says those in Wales who suffered four or more adverse childhood experiences (ACEs) are more than twice as likely to be diagnosed with a chronic disease in later life compared to adults that have experienced none. Adults up to the age of 69 years that experienced four or more ACEs are four times more likely to develop Type 2 diabetes, three times more likely to develop heart disease and three times more likely to develop respiratory disease, compared to individuals that report no ACEs. Adverse Childhood Experiences (ACEs) are traumatic experiences that occur before the age of 18. These experiences range from verbal, mental and physical abuse, to being exposed to alcoholism, drug use and domestic violence at home.
News from the Violence Against Women Team (VAWDA) We will be running a campaign under the Live Fear Free banner from 14th November to 4th December . This will be a re-run of the ‘Making A Stand’ campaign which we last ran in 2014. The campaign consists of posters on buses and rail station advertisements on LCD screens. The Live Fear Free website homepage www.gov.wales/livefearfree www.llyw.cymru/bywhebofn will also be updated with the campaign information and there will be social media activity on Facebook https:// www.facebook.com/LiveFearFree & Twitter https://twitter.com/LiveFearFree . As in the previous campaign we will be asking people to show their support by posting & sharing photos of how they are ‘making a stand’. The hashtag is #makingastandwales. A press notice will also be issued. Over the Christmas period – 15th December to January 1st we will re-run the ‘Can you see what we see’ TV ad we have used previously, and which is on our YouTube channel https://www.youtube.com/watch?v=TUY8APLxnKA&index=10&list=PLHBVoCVw4XZSyz5vDuJTKJbt6eBQZE4hT. The end frame of this advertisement has been changed to show the new website URL so this will be replaced before the campaign goes live. Again there will be a press notice and Facebook / Twitter activity to support this campaign. A new National Strategy setting out how the Welsh Government will continue to tackle Violence against Women, Domestic Abuse and Sexual Violence has been published. Please find link below to the National Strategy on Violence against Women, Domestic Abuse and Sexual Violence – 2016 – 2021: http://gov.wales/topics/people-and-communities/communities/safety/domesticabuse/?skip=1&lang=en
News Round-Up Welcome to the News-Round-Up. Click on the headings of the news item to take you to the full news story on the Public Health Network Cymru Website.
Substance Misuse Nutrition Teenagers drink a bathtub of sugary drinks a year Teenagers, aged between 11 and 18, drink almost a bathtub full of sugary drinks on average a year, according to new calculations from Cancer Research UK.
Physical Activity Debt Twenty three per cent of Wales’ population is struggling to make ends meet A report from the Joseph Rowntree Foundation has found that almost a quarter of people in Wales are struggling to make ends meet and poverty is costing the country £3.6bn a year
Cardiovascular Mental Health Sleep deprivation may cause people to eat more calories Sleep deprivation may result in people consuming more calories during the following day, according to a systematic review and meta-analysis led by researchers at King’s College London.
Health Professionals Noncommunicable Diseases Man develops acute hepatitis from consuming too many energy drinks A 50-year-old man was admitted to the emergency department with acute hepatitis, most likely due to his intake of 4-5 energy drinks every day for three weeks, reveal doctors writing in the journal BMJ Case Reports.
Click Here for more news on the Public Health Network Cymru website
December
05 06 07 12 13
European Summit on Innovation for Health and Active Ageing Brussels Nutrition Society Winter Conference: Diet, Nutrition and Mental Health and Wellbeing London High-level conference on working together for better health and well-being Paris, France A View of‌ Community Care All Nations Centre, Cardiff Mental Health Support in Schools Cardiff
14 15 15
17
Powys Advocacy Network Meeting PAVO offices, Llandrindod Wells, LD1 6DF Social Determinants & Health Inequalities Cardiff
Celebrating Communities Cardiff
Festival of Winter Walks 2016 National Event
Click Here for more events on the Public Health Network Cymru website
#TechniHealth Health Promotion in the Digital Era 27th February 2017 11:00 - 16:00 Techniquest, Cardiff Speakers Include: Peter Jones, Deputy Director Digital Health and Care, Welsh Government Julia Bailey, Senior Clinical Lecturer in Primary Care, UCL Craig Jackson, Professor of Occupational Health Psychology, Birmingham City University David Crane, Researcher, UCL Dr Kelly Mackintosh, Senior Lecturer of Sports Science, Swansea University Dr Melitta McNarry, Senior Lecturer of Sports Science, Swansea University
To book please use the Eventbrite Website
Contact Us Publichealth.network@wales.nhs.uk Capital Quarter 2 Floor 5 Tyndall Street Cardiff CF10 4BZ www.publichealthnetwork.cymru If you have any news or events to contribute to the next edition please submit them to publichealth.network@wales.nhs.uk deadline for submission is the 3rd friday of every month.
Next Edition: Alcohol Awareness