In June Positively UK submitted written evidence to the APPG on HIV&AID. In preparation to our written evidence, we carried out a survey among our members.
We received 236 responses from people living with HIV, telling us how Covid-19 has affected their access to clinical care, treatment adherence and mental health. Most respondent were male (69.49%), 32% female and one respondent identified as non-binary (0.43%). In terms of ethnicity, 69% were white and 29% – from BAME communities. In term of age, older people were more strongly represented: the majority of respondents were in 45-54 range (32%), followed by 55-64 (27%), 64+ (7.5%), 35-44 (17%) and people 24-35 17% and 18-24 – only 2%.
This poses a limitation to our written evidence, and we, as a community group, must strive to amplify the voices and experiences of women, BAME communities and young people living with HIV.
Half of the people who responded felt that their access to treatment and support services had been affected by Covid-19, especially because of clinic closures (45%) or inability to book a clinical appointment (16%).
Several issues were highlighted, including inability to get annual blood tests, not being able to see their clinicians, and having to change from picking up medication from the pharmacy to get their medications delivered. Many respondents lived with co-morbidities and struggled to access medical services and obtain prescriptions.
“I am still able to pick up my medications, but my clinic is not doing any blood tests so I feel a bit anxious not being able to know whether I’m still undetectable.”
“Could not get in touch with clinic for medication, very stressful, no one at the reception was picking up the phone even when they said someone was there, I had to call the pharmacy in the hospital in order to get a number to speak to someone at the clinic.”
43 (18%) survey respondents said that their adherence had been affected since the beginning of lockdown. Of those 18 (42%) were female, which suggests that women were disproportionately facing issues with adherence since they were only 32% of respondents.
Of those who said that they faced challenges with adherence 29% attributed those challenges to mental health concerns whilst 21% thought that their adherence had been affected by ‘concerns around Covid-19.
Comments highlighted that that loss of usual routine, combined with anxiety and also being sick with Covid-19 influenced their ability to adhere.
“I’ve been inside for almost 12 weeks. Patterns break down. I find myself having a harder time remember to take meds.”
“Lack of routine has meant I forgot to take meds on a couple of occasions”
“I’ve just been forgetting to take them so it’s taken strength to continuing”
“Forgetting to take meds and just sleeping through med time.”
“Feeling like ‘It’s all happening again’ Helplessness. Getting only partial supplies of HIV meds. Having to reorder deliveries two or three times as items are not in stock. Fear of getting infected. Distrust of medical advice. Feeling like a ‘guinea pig’ like I did with HIV. Fill in Patient Knows Best Survey and I’ve had symptoms but feel I’m a number…”
A frontline worker highlighted how their stressful shift job affected their ability to remember to take her HIV medications: “[I had problems with adherence] …when stressed about going into work. I clean nights in A&E…”
Issues with access to repeat prescriptions were also identified:
“My review appointment was cancelled so my repeat meds weren’t ordered, I have an extra month but don’t want to have to wait longer than that.”
Respondents also highlighted difficulties in getting medications for other conditions:
“Difficulty in getting other medications – have had to skip doses of blood pressure and diabetes meds.”
“I’m a cancer patient also and also suffer with chronic kidney disease and awaiting surgery for two different conditions. It’s been very anxious and stressful suffering at home alone while isolating and not knowing when I can have my much-needed surgery that was postponed.”
Positively UK support services stopped all face to face engagement on the week starting 16th March and moved all peer support services to phone support and Zoom groups. Since then, we have seen a doubling of numbers in people accessing our services. As most HIV clinics closed during lockdown, we didn’t receive many referrals, nevertheless we continued to register a larger number of new people compared to last year, who mainly self-referred. Our peer workers also proactively reached out to all the vulnerable people we have been in contact with in the past two years, to ensure that none was left unsupported.
The complexity of issues our team has dealt with has also increased and has included:
- Understanding COVID-19 risks in relation to HIV
- Sharing and explaining BHIVA guidelines with simple language
- Sharing trustworthy resources from AIDSMAP, HIV I Base, THT
- Clarifying guidelines around shielding
- Poverty, destitution, access to food and emergency grants
- Advice around accessing welfare and benefits
- Support around increased anxiety and mental health issues
- Digital poverty
- Lack of privacy at home to access on line support
- Supporting service users having COVID-19, returning from hospital etc
- Bereavement caused by losing loved ones to COVID-19
- Stress in relation to disproportionate levels of COVID-19 among BAME communities, who are also impacted by HIV and other health inequalities
For some people who have been diagnosed with HIV for a very long time Covid-19 has felt particularly traumatic as it has reawaken similar feelings to those experienced at the onset of the HIV pandemic:
“It triggered back the painful years of my diagnosis where there was no medication for HIV which left me feeling very vulnerable and scared.”
“Testing positive to COVID-19 brought back the HIV stigma and was so frightened to have another positive as l didn’t know whether l was going to negative.”
“Coronavirus to me has been a reminder of how people with HIV have been treated. When I see so much stigma, the way some countries are burying those who have lost their lives though coronavirus. It’s a reminder of AIDS all over again. Families unable to visit their loved ones in hospitals or nursing homes. Patients dying alone. So much reminder.”
Over half of the survey respondents (56%) said that they experienced mental health issues during lock down.
15% had accessed clinical psychology services, whilst 12% were accessed peer support by Positively UK, and another 12% were accessing support from other voluntary organisations.
Many of those who identified the need for mental health support said that they had not had access to any, and were feeling extremely stressed and anxious: “… I find it difficult to communicate effectively when it’s not face to face. I don’t even use social media it’s not real…”
Some respondents also reported not being comfortable with on line support: ”Everything is closed and I’m not comfortable on Zoom.”
“Have not contacted anyone, as did not want to put worries on others at this time”
Almost half of respondent also reported that they had felt very isolated during lockdown. Loneliness and isolation were also identified as key issues for all people with HIV through Public Health England Positive Voices Survey (2017), and the Covid-19 crisis has most likely exacerbated those issues.
Many of the people who access our services are amongst the most vulnerable and often not in employment. Financial issues and destitution combined with access to food have been very common issues during lockdown. In the past 3 months we have had a three-fold increase in requests for hardship grants.
As a peer-led, peer run organisation, we employ a large number of people with HIV: 90% of our staff are themselves living with HIV. Among our staff some have been shielding because of other heath conditions. Most of us have continued working throughout the crisis and have found the focus and purpose that work provides really helpful. This goes to show that meaningful employment plays a big role in the mental health of people with HIV.
The survey didn’t ask any questions around employment. However, a few respondents offered comments on the issue, and some voiced concerns: “I work for the NHS, and I’m part of the BAME group as well as having health conditions that put me at risk. Despite having a letter from occupational health and 2 separate risk assessments, I was still sent to work with Covid-19 patients”.
One person was forced to resign from their job, but the resignation brought positive change: “ [… mental health has changed….] for the better as have been suffering from depression but took redundancy, which confirmed that my employment was the source. I have sufficient money to last a few more months and have been enjoying the time to reflect and think about a new career. I have a lodger who has been a help too and someone else to focus my attention on to help with his problems. BBV unit at hospital is open and all seems well with my HIV status.”
And another person made a point of continuing working in frontline services, and took pride in not letting the COVID-19 and HIV limit them: “I am undetectable & therefore have continued to work in frontline services. My employers asked me to send them an email stating that this was my choice & I wasn’t at risk (they considered HIV to be an underlying health condition), as I’m undetectable with a cd4 count above 500, I’m no more at risk than the general population. HIV doesn’t define me (but it’s a conscious choice I have to make every day) & surprisingly my hitchhiker (HIV ‘s nickname) makes me more determined to live without fear. I was diagnosed July 2019, figured the Covid-19 pandemic would be the benchmark of how I choose to live. My choices reflect my hopes not my fears… I channelled Nelson Mandela.”
41% people who responded to our survey stated that their access to healthcare services had been affected by COVID-19.
35% identified the closure of face to face clinical service as the main cause, followed by fear of going outside (24%).
Whilst a significant number of people have been able to engage with on line and phone support, this is not an option for everyone. Service providers, including HIV clinics, need to be aware that some people should continue to have access to face to face support, when possible.
“I don’t interact well in the telephone but that doesn’t mean interact via email or zoom can’t be invoked yet that has not even been made available even though GP et al. Know I already struggle with mental health and so like the minor few I’ve been discarded.”
Taking in consideration the responses to our survey and reports from our peer case work team we believe that COVID-19 and lockdown has had a significant impact on people living with HIV, who often belong to other marginalised groups and face health and social inequalities.
Mental health issues, which are already prevalent among people with HIV, have been exacerbated, and there has been an impact on people’s ability to adhere to treatment with 18% of our respondents reporting problems with adherence.
We still don’t know what the long-term implications of this will be.
There are many barriers to accessing on line support including digital poverty, lack of skills and confidence, and lack of privacy to take a phone call or attend a Zoom Group.
Face-to-face support continues to be essential for some, and still needs to be provided for the most vulnerable people to ensure they can maintain their physical and mental health.
Positively UK adapted extremely well to providing support remotely, but the volume and intensity of work would be impossible to sustain without appropriate long term funding.