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"It's good to celebrate how far we've come."

Date: 08 July 2021

Time: 09:00

In this extended article, we highlight the work of our Community HIV Specialist Service, or CHIVSS, led by Clinical Services Manager Liz Foote (pictured), who has worked in the field for almost three decades.

HIV (Human Immunodeficiency Virus) attacks the immune system, rendering the body susceptible to a variety of opportunistic illnesses. Some of these illnesses are rare and are sometimes referred to as AIDS-related (Acquired Immunodeficiency Syndrome). HIV is still not curable, but patients who are on a planned regime of medication (anti-retrovirals, or ARVs) can have undetectable levels of HIV. They then cannot develop AIDS-related illnesses and are unable to pass on HIV. 

Sussex Community NHS Foundation Trust, the largest provider of NHS community services across Sussex, provides a Community HIV Specialist Service (CHIVSS) across Brighton and Hove and West Sussex to support people living with HIV alongside other complex health needs. 

Founded in the mid-1990s, the service now has a 13-strong team which includes a clinical services manager, clinical lead nurse, three clinical nurse specialist team leaders, four specialist nurses, a psychological therapist, and two administrative staff. In addition, a consultant psychiatrist employed by Sussex Partnership NHS Foundation Trust, which provides specialist mental health services across Sussex, works collaboratively with CHIVSS. 

Together, these staff support patients who present with their own unique set of problems, but who often have common threads running through their lives, such as physical and mental health problems, alcohol or drug abuse, trauma, isolation and problems engaging with medical services. 

Some patients may also have conditions such as diabetes, chronic obstructive pulmonary disease, dementia and heart failure, and some may also be elderly and frail, with end-stage HIV, due to not taking their medication. 

“A lot of our patients perceive that they carry a stigma,” says Liz Foote, the team’s Clinical Services Manager, who has worked in HIV services for almost 30 years. “This consequently makes it very challenging to engage with our complex patients. 

“HIV is often the least of their problems. Often it’s actually their mental health, their social isolation and their substance misuse issues that are their main issues. These, in turn, cause them to neglect themselves and their health, so they end up unwell.” 

CHIVSS currently looks after approximately 130 people who live with these difficulties. Despite the enduring stereotype, the patients are not solely drug users and gay men. 

CHIVSS helps them by providing services in their homes that they would normally expect to find in a clinic, but which they are unable to, or find difficult, to attend. These include complex assessments which examine every aspect of their health, annual health reviews to check their general health, monitoring to see how their HIV is progressing, end-of-life care with district nurses and GPs, support with taking medication, and signposting to other services, such as those for drug and alcohol addiction. 

Each new patient has a comprehensive assessment of their physical and mental health with a nurse to understand their particular circumstances. The assessment looks at their life experience, health conditions, treatment history and medication. For example, they may have drug and alcohol issues arising from neglect or abuse. The knock-on effect may make it almost impossible for them to take their HIV medication regularly, worsening their health and shortening their life expectancy. It often takes a lot of time to gain a patient’s trust. 

The service is now seeing more patients with complex health issues. Many also suffer from social isolation, which Liz says is now widespread throughout England. If this were not challenging enough, there remains a long-standing issue with late diagnosis of HIV, with some patients only coming into contact with health services for the first time once they are seriously ill. The COVID-19 pandemic has potentially worsened these problems.  

Keeping patients engaged with services is often a challenge in itself. CHIVSS works closely with other organisations, including NHS acute clinical services and charities such as Sussex Beacon, the Terrence Higgins Trust, and Change Grow Live. 

“I watched It’s a Sin recently, the Channel 4 drama about a group of gay men living in London during the HIV/AIDS crisis of the 1980s, and found it extremely emotive,” says Liz. “For me, it brought up so many memories of what it was like back then when I started in 1993 looking after people with HIV. 

“It’s good for the public to remember what it was like and to celebrate how far we’ve come in terms of the progress we’ve made with treatment and medication, which keeps patients alive. 

“Most people who are diagnosed will start on treatment within days of being diagnosed. If you take your medication and look after yourself you will potentially live as long a life as someone without HIV.” 

Although she welcomes It’s a Sin’s contribution, Liz believes far more could be done to raise awareness and educate people about HIV and AIDS, and has launched an education programme for health professionals to improve understanding of HIV care. 

Further information about CHIVSS, including contact details, are available here on the Trust’s website.