Living with HIV in the UK today

What: A charity offering care and support to people living with HIV

Who: Jason Warriner – Clinical Services Director

Background: Jason has worked in the field of sexual health and HIV for over 20 years. Before joining The Sussex Beacon in July 2015, Jason was Clinical Director of the Terence Higgins Trust (THT) and Director of Quality and Clinical Services at Marie Stopes International.

Approach: Prevention, promotion and protection

Location: The Sussex Beacon, Brighton

Speciality: Sexual health and HIV

What is the initiative and or project you are involved in?

The Sussex Beacon is a charity that offers support and care to people living with HIV. We provide both inpatient,outpatient and day services with a personalised programme of care.

Our aim is to provide high quality care based on best practice, reduce the onwards transmission of HIV, challenge stigma and promote healthy lifestyles for people living with HIV by:

  • responding to changing needs and contributing to the development of standards of care for people living with HIV
  • partnering with NHS organisations to meet shared standards of patient-centred care
  • providing advice and support for people living with HIV and healthcare professionals
  • raising public awareness about the reality of living with HIV in the UK today
  • challenging HIV-related stigma and discrimination.

What prompted the work?

HIV stands for Human Immunodeficiency Virus. The virus attacks the immune system, and weakens the ability to fight infections and disease. It is estimated that:

  • HIV remains one of the fastest-growing serious health conditions in the UK
  • over 104,000 people are living with HIV in the UK
  • Brighton has the highest proportion of people living with HIV outside London.

The life expectancy of people with HIV has increased significantly since the first cases of AIDs were diagnosed in the early 1980s. The development of antiretroviral treatment (ART) in the mid-1990s represented a major turning point and HIV is now considered to be a manageable long-term condition.

With early diagnosis and treatment, people with HIV can lead long and healthy lives. The increased life expectancy of people living with HIV presents new health challenges. The aim of treatment and care today is to ensure that people access anti-retroviral medication, remain well and lead healthy lives. HIV care takes into account co-morbidities, ageing and the needs of the individual in both hospital and community settings.

A major challenge for the UK is tackling late diagnosis. Reports show that 17% people living with HIV in the UK do not know they have the virus (Public Health England, 2015). Those who are unaware may only be diagnosed once the infection is advanced and they have become ill.

Undiagnosed HIV also has an impact on the wider public health; people who do not know they have HIV are at greater risk of unknowingly passing on the virus to others.

How did you initiate the work?

The Sussex Beacon HIV care center opened in 1992.

What difference has the project or initiative made?

With the advent of new treatments, the focus has changed to that of providing specialist care and support to individuals living with HIV. The care required is complex and covers many different areas such as mental health, emotional support, physical health, and also practical support for patients and their families.

As client groups and client needs have changed over the years, so The Sussex Beacon continues to adapt to reflect and meet these changing needs. Our holistic approach addresses the physical, mental and social impact of HIV. HIV is a long term condition and people living with HIV who access care and treatment

All clients have a personalised care plan, devised in conjunction with the multi-disciplinary team, referrer and the client. The aims and wishes of the client are central to the design of such care plans. Our focus is on empowering people to manage their own health with appropriate levels of support and information.

What are the long-term objectives?

We aim to:

  • work in collaboration with other sectors of public health and the NHS
  • support new ways of delivering HIV care in collaboration with local hospitals and community teams and encourage self-management and peer support
  • contribute to the career pathway for nurses entering this specialist area
  • work with the National HIV Nurses Association (NHIVNA) and other professional organisations to share good practice and ideas.