An interview with Sam

Can you describe the HIV Family Support Service?

The Family Support Service was originally operated by a charity called Positive Parenting and Children and in 2016 there was a merger between that charity and METRO. It operates across most boroughs in south London in providing practical and emotional support to families, both living with and affected by HIV. As long as there is a diagnosis of HIV in the family, whether it is the adults or children, we will provide them with support. We insist on their being a minor in the household; that is the only eligibility criteria that we have for the service.

Our primary focus is on the health wellbeing of this minor in terms of their growth, development and trying to ensure that they are safe and thriving and not disadvantaged with a HIV diagnosis within the home setting.

What are the particular needs of your service users?

It was initially set up as providing social work support, specifically for families living with HIV. Over the years it has changed; it has evolved to try to meet the different needs that families might present with.

The different type of issues we support families with vary. It could be right from the point of diagnosis, for example someone who has found out today that they’ve got HIV, or people that have lived with HIV for some time but maybe have struggled to accept their diagnosis. We try to help them with the emotional support to cope with that diagnosis. We provide them with information about how to adhere to their medication and support them in attending their medical appointments. One really important bit of that is how to disclose their status to other members of the family because we find that is a very tricky aspect of living with HIV. Actually, to date there are many cases where an adult is living with HIV but some of their children do not know. Maybe they’ve disclosed to the older ones but not to the younger ones so it is a real challenge, and it stems primarily from fear of being rejected, a fear of being stigmatised.

We try to help the family if they have any complex relationships. These might be relationships between adults, so partners or parents, or they may be relationships amongst the children or relationships between parents and children. We try to help wherever we can to make sure that things are not disruptive, again with the child as the centre of our focus. This means that the child’s education is not affected at home and performance at school is not affected because of any situation that might be happening at home.

We provide peer support for the parents and for the child. The Family Support Workers run a series of groups for the parents and the youth worker runs groups for the children. We provide an advice and advocacy service as well and that’s pretty much what I do. This is around support regarding access to welfare benefits, access to housing through applications, through advocacy and signposting to specialist services for issues such as immigration, debt, or if people need counselling which we find a lot of people do require.

The Family Support workers, on their regular visits to the home, will try and provide respite for some parents. If there is an adult in the home who is focused on looking after the kids and has HIV themselves, and because the youngest is too young to leave at home on their own and then they also have to pick kids up from school – our Family Support workers try to alleviate that problem and step in as and when they can to take the children. This might be taking them out to the park or small trips to the theatre; things like that. Obviously, this is done with the consent of the parents.

How much contact time do families get and for what duration does the service last?

As long as there is a need, we will engage with the family. We try and keep an eye on that and not create a dependency. This means that periodically there will be an evaluation or an assessment to try and understand if the needs they presented with three months ago, for example, have been addressed and if there are any additional needs to be taken into account. If there are none, we then try to work towards an exit process, however if there are still needs to be addressed, we will maintain our presence there. In many situations we find that, if we are dealing for example with the housing situation that these things take a bit of time to resolve and as a result, we will stay supporting the family until that particular need is met.

Who are the main groups of service users?

Over 95% of our service users are BAME and this could be from Africa, the Caribbean, for example, and the majority of the adults we support are single parents or young women who just had their babies and have got no other form of support.  

You mentioned women: what is the proportion of the women who are also BAME?

It’s predominantly single women. We will have occasions when we come across a two-parent household but to be honest with you it’s not frequent that we find that. It’s primarily women, single mothers who have got parenting responsibility to themselves with no support. Age-wise we are looking at a bracket between 20 –50 years old.

How about nationalities of your service users?

There has been the odd White British service user but those are far and few between. It’s an even mix between East, South and West Africa so the Black African belt of Africa. I think about two who are from the Horn of Africa so Ethiopia, Somalia, Eritrea but primarily it’s Kenya, Uganda, Tanzania, Zimbabwe, Democratic Republic of Congo, Nigeria, Ghana – that sort of area that we are looking at. I think those comprise about a half of the people we serve in terms of nationality.

What has the impact of COVID-19 been and how has it affected your service users?

Wow. [pauses] The key thing we have seen in the last few months has been loss of income. This has presented us with a lot of issues because it affects so many other things; Access to the basic necessities of life. Food, the ability to pay bills and so on and so forth.

When we finally come out of this situation, I think that’s one thing we’ll look back and say it really tested us because the number of hardship applications we have had to do went up a lot. The number of referrals that we’ve had to send Foodbanks, for example, or to food charities, went up a lot.

Thankfully, there was something called the Coronavirus Act that was passed.[i] I think it was passed in March or April but what it basically meant was that it prevented any evictions from people who aren’t able to pay their rent. So thankfully we haven’t seen that as an immediate issue because people who have lost their income and aren’t able to pay their rent would have been facing eviction. It’s only in effect until the end of September so we are likely to see a need stemming from that.

In terms of income loss, what is it about the particular jobs that people had that made them disproportionately likely to lose their jobs? What has happened to these people that they don’t have a safety net such as furlough schemes to rely on?

Many people were in part-time jobs when the kids were at school, for example, they could go to work between 9am and 3pm. That all of a sudden stopped. It also points to the fact that many of our service users’ employment status is not regular. We’ve got people who are on zero hours contracts and basically, no work means no pay. They don’t have the protection of employment law which would allow them schemes like the furlough scheme, for example. People like that have suffered a lot in the COVID-19 pandemic. Basically, what it meant was not showing up at work means there’s no money coming in.

I personally knew a few people who had been able to work ‘X’ number of hours but could no longer maintain that because of both the lockdown and childcare issues, so as a result their hours have gone down drastically. That category fall amongst people whose employment situation is slightly more regular and they might have been able to get some support with part-time furlough and in that sense they are more protected.

What about the health impacts of COVID-19 directly on these service users and impact in terms of their HIV status (adhering to medication, etc.)?

I’ve lost a service user to COVID-19.  There have been other cases but with people who work with other members of the team. So, we have seen a few deaths of service users.[ii]

Do you know how many have died of COVID-19?

I can’t say with any certainty, but we could easily establish that.

When you were telling me about your service user, our connection was breaking up. Could you tell me about that again?

This was a young women who I saw about mid-February. She was resident in Lewisham, and she was part of a couple. They had come to me to try and help them work out their benefits and we didn’t get very far because shortly after I saw them, we went into lockdown but, unfortunately, she passed away. She had one young child who is now with the partner.

We work as a team in Lewisham Hospital and the Community Nurse has been filling me in on how they’re getting on and how this service user fell sick and ended up in hospital.

Can you tell me more about the impact of COVID-19 for your service users with No Recourse to Public Funds as a consequence of their uncertain immigration status?

One of the biggest problems that we have to contend with for our service users, one of the biggest needs, is their immigration situation. A large number of them, approximately 80%, have uncertain immigration status and with that comes all the challenges of being unable to access housing, welfare benefits, poverty, debt, poor health outcomes. All that feeds into the whole picture.[iii]

With immigration, there are those who fall under the category of ‘undocumented.’ Then there are those who have got some kind of Leave to Remain in the UK. Even those who have Leave to Remain, not all of them have access to social housing and to the welfare system so even for some of our service users whose immigration status is to a degree resolved, they still have some of these issues that affect people in this situation, such as employment, finding stable housing, finding enough money to put food on the table.

What do you think are the issues going forward post lockdown? What can be done to help improve outcomes for service users with the impact of COVID-19?

Just one example of the current issues for our service users: A few weeks ago, probably about a month ago, there was a High Court ruling that said that people who had limited Leave to Remain. [iv] We are interested to see when things get back to normal, how much this ruling is going to be implemented because for some of our service users it will mean that they now have the legal freedom and ability to claim some benefits which hopefully will alleviate their situations, but we don’t know yet how it’s going to play out because the Home Office could still very well appeal that. We’ve yet to see but that was a welcome piece of news.

I think there are going to be a lot of mental health issues to address because the fact that:

1) Our services users have an underlying health condition; 2) They are from BAME communities who are supposedly at more risk from COVID-19 and the fact that the virus doesn’t seem to be going anywhere anytime soon; I think there’s going to be quite a bit of anxiety to deal with. For those people who are lucky enough to have jobs to return to, how is that going to work out? With schools reopening, I can see a situation where parents are going to be worried about kids going to school and coming back home with COVID-19 so there are going to be mental health issues to address.

From the welfare side of things, because we haven’t been able to meet with our service users face-to-face, what has happened is that we’ve been providing telephone support. So, in a role such as mine, where I help people to do their benefits applications the support has been limited and trying to guide people to complete these forms properly, I can see a situation where we’re going to be inundated with welfare applications that weren’t properly filled in. I think it’s going to make up a lot of work in the months ahead.

So, benefit payments won’t come through if applications are stalled?

The way the benefit system works, if the application is not successful the first-time around, you have to request it to be reviewed and you have to give grounds as to why this is. Hopefully, at that stage, it is successful but if it’s not then it goes to what we call the Appeal Stage. So, you want to try and get things done properly in the first place because the moment it goes to the stage of Review and then Appeal, it becomes increasingly difficult to prove the case.

Which are the main benefits you are supporting people to apply for?

They are classified into two main groups. There are what we call out-of-work benefits so things like Employment and Support Allowance or Jobseeker’s Allowance and then there are sickness benefits so Disability Living Allowance and Personal Independence Payments. Those are the two main ones, and they are the two notoriously difficult ones to get.

The Department of Work and Pensions is very thorough in its assessments and there were a lot of horror stories about the assessment process but those are the two main benefits that we help our service users to apply for.  

Given all the challenges that you have described about this service, what motivates you to do this work?

I grew up in 1980s Uganda and the country was ravaged by the HIV epidemic. I mean it was so bad that at its height, it was estimated that about 25% of the population, was living with HIV.  In our small country I think our rate of prevalence was second only to the USA. That was mid-80s to the 1990s. There was no medication and a lot of poverty, and I saw the ugly side of HIV. I saw AIDS. You know, people wasting away before your very eyes, and at the time, pretty much every household had someone who was living with HIV or who had AIDS.

So, it’s out of that, I guess for me, a young, teenage boy at the time, that leaves a profound impact on one’s mind and shapes one’s outlook. We could see a level of injustice because the wealthy and for the political class who were able to fly to countries such as the UK or wherever to get treatment whereas the ordinary man was left to waste away. And when I say waste away, you know bag of bones type of wasting away. That gave me a drive to help people who are living with HIV and suffering from those kind of inequalities.