What is BHIVA?
It is the British HIV association. BHIVA is a national advisory body on all aspects of HIV care and provides a national platform for HIV care issues. BHIVA is the leading UK association representing professionals in HIV care. Since 1995, BHIVA have been committed to providing excellent care for people living with and affected by HIV.
This year, we are excited to report that BHIVA is holding their annual conference in Brighton!!
It will be opened and hosted by the BHIVA Chair, Prof Yvonne Gilleece, who is a Brighton HIV consultant and the first non-London BHIVA chair.
Running from the 23rd-25th April at the Brighton Dome there will be a large and
varied programme with lectures, as well as research presentations and posters,
including many from Brighton based nurses, doctors, pharmacists, students
and HIV community representatives.
Community registration is available, meaning that anyone from the community can attend for just £85. Click here for more details and how to register
Did you know that the Lawson Unit has a psychology service?
We are a team of psychologists who offer support to adults attending the Lawson Unit at any stage of their journey with HIV, from diagnosis onwards. We know that a diagnosis of HIV and living with HIV can throw up new challenges at different stages of life, and we can offer support at these times. We are an inclusive
service and welcome referrals for people from all backgrounds.
Currently cis and trans women are underrepresented in our service so we are keen to raise awareness of our service to these groups alongside everyone who uses the Lawson Unit.
If you would like to be referred, please discuss this with your doctor or nurse, or support worker. We accept referrals from Lawson Unit staff, other HIV organisations such as the Sussex Beacon or Terrence Higgins Trust, and from GP’s, and other
mental health services.
Once you are referred, we can arrange a first appointment. Sometimes this is all that is needed. Alternatively, we might link you with other services where they can best help you, or we might arrange ongoing therapy sessions if that feels most helpful. We use a wide range of therapy approaches to fit around your needs.
We know that it can be difficult to reach out for support, and that stigma and worries about confidentiality can be a concern. We are sensitive to the concerns of HIV patients, and we will safeguard your confidentiality and are sensitive to the impact a diagnosis can have.
Lawson Unit Community space
In previous editions of this newsletter we have mentioned organisations that use the “community space” – a dedicated room within the Lawson Unit. In this edition, it’s the turn of CGL (Change Grow Live).
CGL now attend the Lawson Unit every Wednesday afternoon 2-4pm – you are welcome to drop in and speak with one of the team.
CGL provides tailored drug and alcohol support to adults in Brighton & Hove. CGL offers 1-to-1 support from recovery coordinators and a variety of online & face-to-face groups to help motivate and support you to address your substance misuse, whether that be abstinence or reduction.
We have well established links with a wide range of LGBTQ+ services and support networks in the city. In recent years we have had the emergence of Chemsex and in response to this we have created effective pathways with other agencies ensuring people accessing the service get the holistic support they need.
A number of people accessing support are living with HIV and many have been supported to attend Lunch Positive and other services in the community. Some of whom have gone on to become volunteers themselves.
We provide a community detox alcohol programme, a prescribing service, needle exchange and have specialist mental health nurses. We support you whether you want to stop, reduce or simply use more safely. We also provide a family & carers service (FACT) for concerned others, who may benefit from support around the substance use of a partner, friend or loved one.
From your first contact with us, we hope to provide you with a space to explore the challenges you face with the understanding from an LGBTQ+ perspective. Of course, a dedicated LGBTQ+ team is not always required from someone needing help. However, we hope by offering a tailored programme of support, people who have previously been reluctant to ask for help can feel they have one less barrier to overcome.
To self-refer or refer someone else is quick and easy by using our online form: Referrals – Brighton and Hove Recovery Service | Change Grow Live
Or, contact us by phone on 01273 731900. Monday to Friday, 9 to 5pm and until 7pm on Thursdays. Alternatively register in person at our office at Richmond House, Richmond Road, BN2 3RL
New Brighton Sexual Health website
Brightonsexualhealth.com has a new look and lots of new features following a complete rebuild.
Over the years the old website had grown organically, with information and sections being added when they were needed to meet the changing needs of patients and the service. As is common with older websites of this type, the navigation had suffered as a result, and it was often difficult to find information on the site.
Working with Mixd, an agency that specialises in building NHS websites (including our public facing hospital site) we rebuilt the website from the ground up, thinking about all the different people who use our site and the main things they need to find easily when visiting it.
In the new HIV care section of the website, we have brought together and improved all the information about our HIV services. The section is linked from a prominent place on the main homepage and takes users to a hub with information about appointments, treatments, specialist clinics and a new ‘meet the HIV care team’ page. We thought in particular about people who might be transferring their care from a different clinic, to give them an idea of what to expect their HIV care to be like in Brighton.
We have also tried to make it as easy as possible for people who have disengaged with their HIV care to get back in touch with us if they are looking for information on the site.
Other benefits of the rebuild:
- Accessibility – the whole website is now accessible for users of screen readers, which complies with new accessibility legislation.
- Information is easier to find – we now have 3000 people a week visiting the website from Google searches (up from 2000 a week)
- Improved navigation – over 300 people a week are now ordering home test kits through the site.
- The website will continue to develop and improve.
We are always keen to hear suggestions from people using the site. If you have feedback for the website team, we are also very happy to hear that too, so please get in touch using the feedback form.
We’re trying to go Green!
In 2020, the NHS was the world’s first healthcare organisation to commit to net zero carbon emissions by 2040. Although our specialty is not a huge carbon emitter we can all play our part by considering and minimising the impact of the healthcare we
provide on the environment. If global healthcare was a country it would be the 5th biggest carbon emitter in the world!
In response to the Trust’s ‘Patient First, Planet First Green Plan’ the ‘HIV SHAC Green Team’ was set up in 2021. We are a multi-disciplinary group within the HIV and Sexual Health (SHAC) departments (nurses, doctors, pharmacist, health adviser, administration and a patient representative), who meet monthly to champion and implement environmental sustainability. We have increased staff awareness through education sessions and helped the department to:
- Reduce use of single-use plastics (eg cups, tourniquets, gloves,
vaginal speculums) - Reduce printing/waste
- Streamline care to leaner, more efficient pathways
- Produce bespoke online information leaflets AND
- Participate in fun events like weekend beach cleans
Often changes help patients, planet and purse so it is really a win-win!
Two larger projects were the ‘Gloves Off Campaign’ and the ‘Speculum Project’.
With the first we successfully reduced our departmental glove use by 45%: good for the environment, better for hand hygiene, reduces stigma and saves money. This initiative is now being expanded across the Trust. With the second, we replaced single-use plastic speculums with reusable metal ones that are sterilised after each use and which last for over 20 years, making big carbon savings. Most patients and staff prefer them and they work out cheaper in the long term. This is being replicated in many other HIV SHAC departments nationally.
The Team’s success has also been recognised nationally: in 2023 we were awarded the British Association of Sexual Health and HIV Cathy Harman Award, which acknowledges innovation and service modernisation.
What can you do to help?
Bring a reusable cup to appointments and use our water fountain or
get a discount in the hospital cafés
- Check expiry dates of your medicines and use those with the closest date first, to minimise waste.
- When changing to a different medicine, if appropriate use up the old medicine(s) first. Ask your Doctor or pharmacist if you’re not sure.
- Recycle empty medicine packaging where possible eg plastic and glass bottles, package inserts and cardboard boxes can all go in household recycling. Empty blister packs can be recycled in some stores (eg Superdrug, Boots) and a few Council household recycling bins (eg West Sussex). Medicines should be returned to a pharmacy and NOT put in a bin.
- Consider how you get to the hospital – active travel eg walking/cycling, if you’re able, is good for us all and the environment; or use public transport if that’s an option
HIV research at the Lawson Unit
ISLEND–1 and ISLEND–2
We are excited to be currently recruiting patients for these global studies looking at weekly oral antiretroviral treatment in the ISLEND-1 and ISLEND -2 studies, although these are likely to complete recruitment very soon. We are particularly keen to find interested people who have often been underrepresented in studies ie aged > 65 years, have black ethnicity and women.
SPHERE
UK designed study looking at whether one to one health coaching can improve mental health in people living with HIV. Some of our very own Lawson Unit nursing team have been trained up as health coaches for this study so it will leave a useful legacy whatever the outcome. More information here SPHERE Study – University of Birmingham
ACACIA
The ACACIA Study is looking at how newly available injectable HIV-therapy (Cabotegravir/Rilpirvirine) might improve quality of life and cognition in people with HIV who are experiencing cognitive impairment. For those taking part, the study lasts one year and involves completing questionnaires, a cognitive assessment and an in-depth interview with a researcher. It is available to people with HIV who are eligible to switch to this type of treatment, and who have cognitive difficulties.
TINIES
New technology of small blood volume capillary testing (known as TINIES), can potentially be used for routine biochemistry, full blood counts and HIV Ab / HBV sAg / HCV Ab testing. Here’s a presentation about it at our last HIV conference: PowerPoint Presentation
PREPARE
This international study is collecting information from people who are newly diagnosed with HIV and have ever taken HIV pre exposure prophylaxis (PrEP) before being diagnosed. CHIP – Centre of Excellence for Health, Immunity and Infections
RIO
The main study has finished recruitment and the study results will be presented at an international conference (CROI) in USA in March 2025. Later this year we will be opening a new RIO study arm C where people will receive a Broadly neutralising antibodies infusion (BNab) and undergo analytical treatment interruptions. More information about this will be available on the study website later this year. For people living with HIV – RIO HIV Trial
POPPY study (wave 5 )
The Poppy Study has been running for more than 10 years and is investigating how medical conditions affect people with HIV as they age. The study includes regular visits and discussions with a Nurse, cognitive function tests, walking tests, bone density scans and questionnaires. It compares if living with HIV alters these experiences. We will be contacting those who are currently taking part soon and are also looking for new people to join the study. This includes both those living with HIV as well as those who don’t have HIV, who can act as a comparison group.
Both Poppy and ACACIA are currently looking for more people to take part, if you are interested and would like to find out more, please contact [email protected] or call 01273 523079.
Local HIV testing initiatives
In recognition of HIV Testing Week, we want to celebrate the success of our emergency colleagues who take thousands of HIV blood tests each year . This effort provides a tremendous opportunity to detect, treat, and reduce HIV across Sussex.
For nearly three years, patients at the Royal Sussex County Hospital emergency department have been routinely screened for HIV during routine blood tests, unless they opt out. This initiative is part of our commitment to achieving zero HIV transmission by 2030.
Since the program’s inception in 2022, over 75,000 HIV tests have been conducted, resulting in 20 new HIV diagnoses. These individuals have been offered life-saving treatment. Early diagnosis through routine screening not only improves the health of those affected but also reduces transmission, as individuals on treatment cannot pass the virus on.
The opt-out screening program expanded the following year to include hepatitis C. Since March 2023, more than 52,000 tests have been conducted, leading to 47 new hepatitis C diagnoses. Due to the pilot’s success and new government funding to enhance testing and reduce transmissions, opt-out screening for both HIV and Hepatitis C is planned to be rolled out at Worthing emergency department starting April 2025.
Building on this work, we are also one of ten Trusts in the country to participate in the HIV Confident charter programme. A first step is to understand people’s knowledge and attitude around HIV.
PrEP in the city
PrEP is a medication which can be taken to prevent someone acquiring HIV – it is very effective and can be accessed free of charge… we just need to make sure that the people who need it are aware of it.
An important part of our work for the sexual health team is trying to reach people who are underserved by sexual health services to help them start and continue on HIV prevention medication (PrEP).
As well as regular PrEP clinics running through the week at SHAC, we also run some clinics in the community. We have a twice weekly clinic with the Terrence Higgins Trust, known as PrEP2U, we also regularly visit R-bar, the Clare project and Iris asylum seekers group, as well as ad-hoc visits to people engaging in sex work or other community settings.
We’re very open to new ideas so if you have thoughts of other groups in the city who may welcome a visit from us, get in touch!
Important update from The Sussex Beacon
The Sussex Beacon is undergoing an important transformation as we shift our focus to a community-based model for delivering clinical care and support. This marks a new and exciting chapter for us.
What is changing?
We will be working to move elements of nursing provision into the community – alongside our community support that we already provide. This means our In-Patient Unit will close in February 2025.
If you need this level of care, from February you will still be able to access all the care you need, and our team will be able to help and support you to access this, along with our partners across the city and further afield. We understand you may have questions about what this transition means. Please know we’re here to provide support and reassurance.
Looking Ahead
We are collaborating with the NHS to review how services for people living with HIV should be delivered across Sussex and make sure that the best possible services are available for our local community. We will keep you informed as this work progresses. This presents us with an exciting opportunity to enhance care during this period of change and test different ways in which we could do this, working with partners across Sussex.
Need to Talk?
If you’d like to speak with someone personally about this update, feel free to contact either Tracey Buckingham at [email protected] or Alan Spink at [email protected]. We will be happy to arrange a conversation with a member of our team.
Thank you for your continued trust and support as we navigate this
transition together. This announcement will not affect the Community Services that you currently use.
Thank you to Dr Gill Dean
Dr Gill Dean joined the Lawson Unit back in 2001 and has made a significant contribution to the Lawson Unit becoming a leading centre of excellence for HIV care.
Gill has been steadfast in providing the best possible HIV care (imaginable) and has been instrumental in improving HIV testing rates and reducing HIV stigma in the Brighton & Hove area.
As a key leader in Brighton’s Fast-Track City initiative, Gill has been pivotal in helping the city exceed the global 95-95-95 targets for HIV testing, treatment, and viral suppression. She has spearheaded a number of public health education projects including animations videos, myth-busting resources and the famous Martin Fisher Foundation HIV themed bus, that were all designed to reduce the
stigma surrounding HIV. Gill is passionate about making HIV testing more accessible and is involved in several community outreach programs aimed at breaking down barriers to testing and treatment.
Gill will no longer be doing an HIV clinic in the Lawson Unit, but will continue to focus her work on HIV prevention, early diagnosis and treatment, and ensuring patients receive comprehensive, compassionate HIV care. Gill will remain at the Claude Nicol Centre and continues to serve as a Trustee for the Martin Fisher
Foundation.
Q&A
HIV and Brain Health
A New Resource for People with HIV
A new website launched on World AIDS Day 2024 to support people living with HIV who are experiencing memory or thinking problems. Created by researchers at Brighton and Sussex Medical School, alongside service users from the Sussex Beacon, the website is designed support those with concerns about thinking and
memory and to offer clear and helpful information about brain health.
This resource was developed following research showing that many people with HIV who are experiencing cognitive issues, as well as their healthcare providers, reported a real lack of information on how to maintain and support brain function, especially as they age. Many also expressed confusion about how HIV can affect the brain and what it means to be diagnosed with cognitive impairment.
The website explains what cognitive impairment is, why it might happen, and
the signs and symptoms to look out for. It offers practical advice on where to get help if you’re concerned, what to expect if you reach out for support, and tips on keeping your brain healthy. It also provides strategies for managing everyday challenges if you’re dealing with thinking or memory problems.
For healthcare professionals, the website offers guidance on understanding the various causes of cognitive impairment in people with HIV, how to assess them in clinical settings, and how to create personalised care plans based on the root causes.
This novel website is an important resource for people living with HIV and those who care for them, offering crucial support for understanding and managing brain
health as part of overall wellbeing in people with HIV.
Please visit MemoryHIV.org to learn more.
Weight loss medications
It’s difficult to read or watch anything at the minute without hearing about medications to help with weight loss.
In the UK these can be prescribed by doctors, or be bought without a prescription, but should only be used by people who fit certain criteria. Examples include: semaglutide (Ozempic, Wegovy), tirzepatide (Mounjaro), orlistat (Xenical).
There can be interactions between some weight loss agents and certain HIV medication. For example, semaglutide (Ozempic, Wegovy) and tirzepatide (Mounjaro) can stop rilpivirine being absorbed properly and decrease its effectiveness (rilpivirine is also contained in Eviplera, Juluca and Odefsey).
Please contact the Lawson Unit pharmacy team if you are considering using any of these weight loss agents so that we can check compatibility with your antiretrovirals, and if you are already using them, please also tell your doctor or nurse so we can make sure your records with us are up to date.
You can contact the Lawson Unit pharmacy team on 01273 664948 or email
[email protected]