Living through lockdown with HIV

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Alan Eagleson on how Terrence Higgins Trust Scotland has been providing vital support for people living with blood borne viruses during lockdown. #NeverMoreNeeded

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29th May 2020 by TFN Guest 0 Comments

The last two months of lockdown have had a huge impact on the services Terrence Higgins Trust delivers in many parts of Scotland. Our clinics are closed; face-to-face-support groups and counselling are not able to function; community outreach work is suspended. But the needs of people living with HIV and hepatitis C remain – in many ways they are more acute than ever, with social isolation, fear and uncertainty affecting the quality of life for many people.

Alan Eagleson

Alan Eagleson

There’s a real opportunity to think about how we can harness the feeling of kindness and solidarity that’s been evident during this tough time

In Scotland, over 5,400 people are estimated to be diagnosed as HIV positive and an estimated 21,000 people are living with chronic hepatitis C. For the vast majority of people living with or undergoing treatment for a blood borne virus, they will not be considered at any greater risk from COVID-19. However, for a number of our most vulnerable service users who have serious underlying health conditions, lockdown has meant they are now having to self-isolate for at least three months.

Staying at home for this amount of time would put a strain on anyone’s mental wellbeing but people living with HIV are twice as likely to experience poor mental health, so with this comes unique challenges that we are quickly adapting to. Existing feelings of stigma and isolation, which have impacted people affected by blood borne viruses for years, now risk being exacerbated.

We have seen a spike in enquiries from people worried about the potential impact of COVID-19 on their health and wellbeing. In particular from people who have been advised to self-isolate and are unable to collect medication and other supplies. That’s why we’ve been working with clinics to make home deliveries of medication, as well as food deliveries. For people living in rural parts of Scotland, this has been a lifeline for many of our most vulnerable service users.

Following our successful application to the Scottish Government’s Wellbeing Fund, we are now able to devote extra staffing to our emergency response work, so we can be there for more people who need us.

Digital communications have become the bedrock in our frontline support. We launched our new online hub – Terrence Higgins Trust At Home – which brings together all our digital services to ensure people have all they might need during this time. Our offering includes free online counselling for people living with HIV and regular digital meet ups, with a particular focus on older people living with HIV.

This shift in emphasis to online offerings has seen our HIV home testing service rolled out for free to eligible people living in Ayrshire & Arran, Fife, Lanarkshire and Tayside. Additionally, our health promotion specialists have been busy upscaling our virtual outreach presence through dating apps and websites, offering the very latest advice and support on maintaining good sexual health.

However, we know that digital poverty and exclusion is a real issue for many of the people we are currently supporting. This can have a real impact on mental health and feelings of isolation. That’s why we are looking at providing some of our service users with phones and tablets so they can be better connected and access the range of online services now available.

Working together has always been a real strength of the third sector in Scotland and we are seeing how much this matters to the people we support

In that same spirit of keeping people connected, we have strengthened our work with key partners, such as housing associations so our service users know where to go if they have concerns about things that aren’t exclusively health related. Working together has always been a real strength of the third sector in Scotland and we are seeing how much this matters to the people we support.

As Scotland now starts to gradually emerge from lockdown, there’s a real opportunity to think about how we can harness the feeling of kindness and solidarity that’s been evident during this tough time. The importance of good mental health and wellbeing has really cut through with Scots and both these are vital to ensuring people living with and at risk of HIV and hepatitis C can live well.

Stigma and discrimination continue to be real barriers for people to come forward and get tested – that’s something we’re determined to change but everyone has a part to play in doing this. From the language they use to knowing the facts about HIV and hepatitis C, all can make a real difference to the lives of people we support.

These few months have seen huge changes in the way we work, some of which we hope will be temporary, others we will continue with, such as tackling digital poverty. We’ve made huge advances in treatment and support available for people living with HIV and hepatitis C, but for some of our most vulnerable services users, we’ve never been more needed and we will continue to be there for them.

Alan Eagleson is Scotland Hub Manager for the Terrence Higgins Trust. For information on services and support available from Terrence Higgins Trust visit tht.org.uk/scotland