Equalities, Human Rights and Civil Justice Committee [Draft]

Meeting date: Tuesday, March 26, 2024

Official Report 512KB pdf

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HIV: Addressing Stigma and Eliminating Transmission

Our next item is to conclude our evidence taking on the HIV anti-stigma campaign. I welcome Jenni Minto, the Minister for Public Health and Women’s Health, and Rebekah Carton, a blood-borne viruses and respiratory surveillance team leader from the Scottish Government. I refer members to papers 2 and 3, and I invite the minister to make a short opening statement.

Thank you for inviting me and for considering the important issue of HIV stigma.

HIV stigma remains a barrier to accessing treatment and care and it puts people at risk, but, ultimately, we aim to build a Scotland in which everyone is treated with kindness, dignity and respect.

This is about real people who lead real lives. The Terrence Higgins Trust anti-stigma campaign showed some of the harms that can be caused by stigma. Although it was a proud moment to fund and support such a hard-hitting campaign, I am not proud that HIV stigma remains. We are committed to working to tackle that. We must continue to remember that the “H” in HIV stands for “human”, and put people at the centre of everything that we do.

In 2021, we committed to eliminating the transmission of HIV in Scotland by 2030, and I am pleased to announce that our HIV transmission elimination delivery plan was published today. It focuses the actions that we will take to deliver on the 22 recommendations that were presented to us on 1 December 2022 as part of the HIV transmission elimination proposal.

We worked with a wide range of stakeholders to develop the plan, and many of the actions in it are already well under way. We have taken the time to ensure that the plan that we have published today has the support of the sector, is deliverable and achievable and will take us closer to our transmission elimination goal.

The plan takes us up to 2026, at which point it will be important to take stock again and adjust our focus as we aim toward 2030. The delivery plan focuses on preventing new cases of HIV and reducing stigma is an important part of that. However, it is also important that we continue to support those who are living with HIV. Although we aim to eliminate HIV transmission by 2030, we will continue to care for those who are living with the virus long after that.

The delivery plan complements the wider aims of the “Sexual health and blood borne virus action plan” that was published in November 2023, which aims to eliminate new HIV transmissions and to support people who are living with HIV to

“lead longer, healthier lives, with a good quality of life”

in

“a society where the attitudes of individuals, the public, professionals and the media in Scotland towards sexual health and blood borne viruses are positive, non-stigmatising and supportive.”

Both those outcomes have remained a key focus of our blood-borne virus work in the past 10 years and it is right they continue to be the anchor points for our work. However, the Scottish Government alone cannot deliver them; it takes the support and co-operation of our national health service partners, third sector colleagues, academia, industry and the general public. We continue to work with our partners to break down barriers to testing and treatment, including by funding opt-out testing pilots in three accident and emergency departments, funding Terrence Higgins Trust to offer postal and community-based HIV testing and working with Public Health Scotland to develop online postal self-sampling for all sexually transmitted infections, including HIV.

We continue to fund Waverley Care to deliver fast-track cities—an intervention that ensures that the voices of people living with HIV are engaged so that they have a say in shaping local and national priorities.

It is important that we reflect what Professor Claudia Estcourt said at the committee’s meeting on 12 March:

“Scotland is not England-lite”—[Official Report, Equalities, Human Rights and Civil Justice Committee, 12 March 2023; c12]

It is therefore vital that our interventions and actions address the needs of our population, our demographic and our epidemic. Considerable progress has been made in reducing the number new cases of HIV in Scotland. As we move towards our transmission elimination goal, we must do what is right for those who are living with HIV or those who contract HIV in Scotland.

Thank you, minister. We now move on to questions, and I will open up. The committee has heard from those who are living with HIV. Some of the stories that we heard about the stigma that still exists were quite harrowing, particularly in relation to maternity services, for example. People who were already in a vulnerable position were given the wrong information about breastfeeding and how they could birth their babies. It was quite hard to hear some of the things that were said. What mandatory training, if any, in HIV and the stigma surrounding it is provided for health and social care staff?

I agree. Some of the stories that I have also heard are harrowing; they are not the kind of stories that we want to hear about Scotland. In his evidence, Nicky Coia reflected on one story from a nurse in the Greater Glasgow and Clyde area. It is important that we ensure that everybody who works in health and social care gets the right support to understand how things have changed in the way in which HIV is treated. It is fair to say that there is a lack of up-to-date knowledge; the committee heard evidence to support that.

That is why the work of Dr Daniela Brawley and NHS Grampian on e-learning is so important. If it is successful, I hope that it will be rolled out in the same way as other education that is provided on the Turas learning system. In his evidence, Nicky Coia talked clearly about what Glasgow had done 10 years ago and recognised that there might be a need to build on that.

Education is one of the important aspects of our plan. It is especially important to remember that stigma is a dreadful thing. I attended a round-table meeting hosted by Paul O’Kane—it was one of the first that I attended in my role—because it was important for me to hear from people who are living with HIV about the impact that it has on their lives. It is about those awareness campaigns, and about how we, as elected members of the Parliament, can support that awareness.

I pay tribute to the Terence Higgins Trust for the fantastic collaborative work that it did to produce the campaign advert video that was shared on media from October last year. We are currently analysing that campaign to get its outcomes. It is really important to raise awareness and try to reduce stigma.

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I am glad to hear about education, particularly in healthcare settings. One of our witnesses who has lived experience made the point that there is often a gap in education. Do you see that education as being continuous professional development and not just a one-off, tick-box exercise that people do when they are professionally qualified?

All education and learning has to be continuous. I do not think that, in any profession or walk of life, you hit a door where you stop learning. I can speak personally to that experience in my previous career and in this role. Education and learning are important, which is why it is important that we see how the work that is being done in Grampian on e-learning can be rolled out.

What training was given to emergency department staff who are engaged in opt-out HIV testing?

I pass that on to Rebekah Carton.

The three boards that have done that work worked locally on its delivery and I think that it was done differently in each health board. I am not sure whether those boards have developed any kind of package, but they worked with the accident and emergency department staff to let them know what they are doing and why they are doing it. They have done that locally in a way that fits with their individual rollouts.

We will get the information from that work when we evaluate the outcomes of those opt-out pilots.

That is helpful. I now move to questions from other members.

Good morning, minister. Thank you for being with us and thank you for your opening comments.

In either your opening statement or in response to the convener’s questions, you said that raising awareness is key to the crucial work of challenging and tackling stigma. You mentioned the short film, but we also know that storylines in dramas can have a significant and positive impact by raising general societal awareness, encouraging people to get tested and demystifying some of the process. What plans are in place to amplify and extend the campaigns that we have seen in recent months to focus on raising awareness and tackling stigma?

I whole-heartedly endorse what Maggie Chapman said about television, film and adverts. When I think about where my knowledge came from, it was from the films “Philadelphia” and “Dallas Buyers Club”. You spoke about dramas, and “EastEnders” had that kind of storyline. That is important. In the online age, short pieces can also be helpful, which is why the Terrence Higgins Trust film really cut through. It was short and hard hitting, but the message was absolutely clear. As I said earlier, we are doing some work to gather information on that to see how it has worked, and we will keep that in mind if we have further plans for whatever awareness raising that we feel needs to be done.

I appreciate that you want to evaluate the outcome of the Terrence Higgins Trust film and the impact that it has had. There might be other ways of getting the message out to different audiences to identify some of the cultural barriers that people can experience. We know that stigma can be compounded in areas of intersectionality such as culture, women, black and ethnic minority groups. Other than films and that kind of targeted project, how does the Scottish Government plan to take an intersectional approach to tackling stigma, either through the delivery plan or elsewhere?

There has to be a focused approach. We have been funding Waverley Care, which is signed up to fast-track cities and works closely with people who are living with HIV to ensure that their voices are heard. In an awful lot of cases, it is the peer-to-peer conversations that help to spread awareness. Waverley Care has been helpful in creating videos on how to access post-exposure prophylaxis, for example. That is an important way of targeting the right support.

I represent Argyll and Bute, and Oban has a fantastic pride march. Rothesay, on Bute, is also having one this year. Those are really important awareness-raising events. The Terence Higgins Trust, Waverley Care and various other people come to Oban. It is a really warm and happy event, and a lot of information is exchanged, which is a really good way of doing it. It is locally based and, again, the message is being spread.

My final question comes back to education. Do you anticipate changes to the guidance for health and wellbeing education in schools and elsewhere to address stigma and misconceptions about HIV and increase understanding and awareness?

That is an important area. As I said, we do not stand still. We must keep learning and refreshing. The other important area that was brought out in the evidence is that the education should be wider than just HIV. It is much more about people’s sexual health. In one of the schools in my constituency, some of the fifth and sixth year girls have taken that on board. They are looking at the best way for them to get educated, whether it is in a school environment or at their general practice. There is a real buy-in for this, not only from teachers but from pupils.

One of the things that we heard quite clearly was that, in order to tackle the stigma associated with HIV, we need to tackle the taboo around talking about sex.

Absolutely.

That speaks to what you have just said.

Good morning. Minister, last week, we heard really strong testimony from witnesses that stigma is still prevalent in rural communities. I put on the record a huge thank you to the people who spoke to us at that meeting. Some of the things that came over to us about the lives that those people have led and the stigma that they have had to deal with were absolutely heartbreaking.

What is the Scottish Government doing for rural areas? How are people being supported and what is being done to try to prevent some of that stigma in rural communities?

As I said earlier, I represent one of Scotland’s rural constituencies. I have had conversations that are similar to some of the evidence that you heard.

I always think that there is an interesting balance to take in rural communities. Because of the stigma, some people are happier travelling to a larger population centre for their treatment. We have to bear that in mind when we are looking at the situation.

In the committee’s previous evidence session, Dr Howe gave strong anecdotal evidence about how she operates and how things operate in Highland. It is important to recognise that, alongside the delivery plan, we have done some work to look at rural inequalities and how we can ensure that the service that people in those areas get is the same as we would expect in the larger centres and is person centred. I think that that work will be published later this week.

The committee also heard from Professor Estcourt about the amazing work that is being doing with regard to ePrEP. Again, that could work well to support people in rural communities.

Have I covered everything, Rebekah Carton?

The other thing to think about is that we focused on Highland for one of the opt-outs. Some of this work is about making sure that we take local approaches where they are more appropriate. Some things are better done on a national basis, and some things are better done on a local basis with clinicians who know their population and can tailor what is needed to communities. That is what we have tried to do through the plan.

Good morning, and thank you for coming along today.

You have already answered one of my questions, which was about when the delivery plan would be published. That has been done—I have had a quick look at it.

What resources will be available for the implementation of the delivery plan? Are resources specifically put aside for it?

I appreciate that we published the plan just this morning. If the committee has any further questions about it and wants to write to us, we would be very happy to have a dialogue in that way.

On resources, we have set aside £1.7 million for the whole HIV plan within this element of Government. The committee heard very clear evidence that resources are tight for this. I am reflecting on that. That is why it is so important that we get the spending on this right. There will be more information coming out on how we decide to spend the money, but we appreciate that we have a tight budget.

I put on record the amazing collaboration that happens among the third sector, academics, health boards and the Government. That came across really strongly in your two evidence sessions in the previous meeting. I like to say that they are our critical friends, and I think that we work very well together. I really appreciate their hard work. They know their community so well. Dr Clutterbuck reflected on that in his evidence.

Obviously, we will keep a close eye on the funding and how it is spent in the future.

You said that the plan is up to 2026. We are looking for elimination of HIV by 2030. How will you monitor the plan’s progress and effectiveness in the short term?

The monitoring of the plan is incredibly important. There are many different groups and acronyms. We now have a group that is called HIV-TEDI.

Yes. That is the HIV transmission elimination delivery plan implementation short-life working group.

10:30  

That group will oversee the introduction of the primary, secondary and tertiary elements of the plan. Our relationship with Public Health Scotland is also important because of the additional information that it can provide us with and the additional work that it will do to support the plan. That is such a collaborative way forward; PHS is always checking what we are doing. Also, because our relationship with communities is so close, they will be quick to say that perhaps we need to re-emphasise certain aspects.

Thanks for that. I have a final question. I am sure that if I look at the delivery plan the answer will be there, but I will ask it anyway. What training proposals are there for new staff who might be involved in the delivery of the plan? Are any such proposals linked to the plan?

I have already highlighted the work that is happening in Grampian for the wider health and social care partnership. I ask Rebekah Carton whether she wishes to add anything on that aspect.

Do you mean specifically for HIV staff?

For new staff who are coming in and who will have to help to deliver the plan. What training has been put in place for them? We heard from some witnesses about medical professionals who perhaps do not understand HIV and are double gloving and so on. What training has been put in place for new staff who are entering the NHS?

Education of health and social care staff in general is in the plan. We are still working out exactly how we will deliver that. There is no specific action on new HIV staff but I guess that it will fall within our wider delivery plans. We are still formulating exactly what the materials might look like, and which resources we will provide, but it is in the plan to provide more education for both existing and new staff.

Perfect. Thank you.

Minister, will you give us some background to the pilot on opt-out testing? Why was it implemented so quickly, and why is it running for such a short period of time?

When we talked about the possibility of an opt-out pilot, we thought it important to choose a variety of health boards to participate. They include Lothian, which covers an urban area; Grampian, which includes a mixture of areas; and Highland, which covers a more rural area. We have therefore covered a cross-section of Scotland. It is important to say that the group that had been involved in considering whether opt-out testing was the right way forward had asked for such an approach.

We are often caught between a rock and a hard place on such matters. Should we take action quickly? Should we ask health boards to apply for a pilot quickly, so that we get a response from it and receive data? Alternatively, should we wait longer, which can often result in our being asked why we are not doing it? On balance, I think that we made the right decision to fund pilots in those three areas, because they cover different elements of the Scottish mainland and the islands.

Are the durations of the pilots long enough to give you a picture of what is really happening?

We must remember that the pilots are happening in busy A and E departments. We do not want to introduce, for long periods of time, additional stresses in areas that are already very stressed. We felt that we could get the answers from the time periods that we set.

It is important that we recognise that pilots are also happening in England. The data that comes out of those, as well as the data that comes out of Scotland, will be considered so that we can see the bigger picture.

Did you consider any other pilots, either this time around or for the future?

I would never say never. Depending on the prevalence of the virus in Scotland, and how elimination is progressing, those could be appropriate. If there are changes in the population in Scotland through migration, we need to make sure that we are nimble. That is one of the things that the delivery plan allows us to be. It allows us to ensure that we focus on the right areas to hit the HIV elimination target in 2030.

Do you have any early feedback that you can share with us?

With regard to the three opt-out pilots, no, I do not, but I am happy to share feedback with you once we get that.

Do you know when the evaluation will take place?

It would be right for the evaluation of the opt-out pilots to start once the pilots are finished and I do not imagine that it will take too long.

Due to local pressures, one of the pilots was a little later starting than originally planned. The pilots are still going on at the moment, so we will be able to do the evaluation after they have finished.

Good morning, minister. Thank you for your update about the delivery plan. I will cover access to PrEP. What are you doing to address the problems of access for groups that are less likely to access PrEP? I refer to women, the transgender community and black and ethnic minority folk, to name a few.

We need to recognise how game changing PrEP has been in Scotland. There are currently about 8,000 people living with PrEP as part of their daily life. That is a positive story.

You are right. In Scotland, we have reached the point at which we have to find the people who are in the less obvious communities. As I highlighted earlier, that is why the work that the third sector organisations are doing, alongside academics and clinicians, to ensure that we can find those communities in the best way is important. Nicky Coia referred to the Glasgow injecting community and noted that the safer injecting rooms might help.

We have created a PrEP short-life working group, which will consider how we manage and maximise PrEP eligibility criteria and, perhaps, consider the expansion of PrEP prescribing. I go back to the answers to the first set of questions about stigma. We need to find the best way to ensure that people who have HIV or might have HIV have the best way of accessing the services that we provide. I hope that the delivery plan will help with that.

That is key. We have also heard that it is much more expensive to administer PrEP through community pharmacies, even though that might be more convenient for folk who need it. Why is that and how do we address it?

That is one of the things that we are looking at. If I am correct—Rebekah Carton will correct me if I am wrong—currently, clinics have to prescribe PrEP. We are taking forward work on how we can widen the prescribing of PrEP so that GPs can do it. We are doing scoping work in NHS Grampian with GPs to find out how open they are to doing that and how we can make it work in the best way possible for them and for the people who will be prescribed PrEP.

There is concern that resource that is freed up from the ePrEP pilot might be diverted away from specialist sexual health services. What assurances can you give the committee that that will not happen and that it will be directed towards ensuring that underrepresented people have support to access ePrEP?

Thank you for that question, which is really important. Everyone here recognises the pressure that the Scottish Government’s budget is under. However, as I said earlier, we have set aside £1.7 million to support the plan in the next financial year. It is my job, with my critical friends, to ensure that our funding allocation is directed in the right way.

We would also be on that list of critical friends. Thank you.

The committee is particularly interested in what data we have and how we use it to inform the actions that we take. We have heard from Terence Higgins Trust about the lack of data on stigma and how that prevents us from properly tracking our efforts to tackle it. Does the Government plan to assess nationally how stigma is experienced by people living with HIV in different geographical areas? We have heard a lot of evidence about how stigma manifests itself for someone who is living in a rural community and it being different from what happens in urban communities.

We have also heard a lot this morning and throughout the evidence that we have taken about people who use the different public services and the way that stigma is experienced there. Obviously, the Government can receive reporting from the various public services. What work will be done in that space?

I acknowledge and have reflected on the evidence that was given to us about the gaps in specific areas. The plan that we have launched today supports the need to find ways to increase data gathering.

We also need to recognise—I might refer to rural communities, but this can also be across other sections of the population—that, because the numbers in Scotland are so small, we need to make sure that we gather and report that data in the best way so that people cannot be identified and we do not create a knock-on effect on stigma.

Dr Kirsty Roy talked about the work that Public Health Scotland is doing to create a dashboard to ensure that we get the best information, and I am fully behind that. Paul O’Kane is right about how different health boards have different pockets of information and we need to pool that, so part of the plan is a national Scotland-wide audit of HIV contact tracing, which I hope will help to feed into that.

The plan specifically includes work to support data gathering, as well as working closely with Public Health Scotland to ensure that we get the right information and that it is produced in the right way.

Having information about what is happening in public services is very important. I appreciate that you spoke for health boards there. However, from the evidence I have head, it is clear to me that stigma exists across the public sector. I have had conversations with people who have dealt with the police and found it very difficult. We know that Police Scotland is facing a number of challenges at the moment. There is a degree to which we need to reflect on how well training is given in parts of public services. We have also heard about people in education settings, for example, where stigma still persists.

Will you expand on what can be done outwith health settings so that people can report their experience and for that information to be properly collated? My concern is that we do not have a good picture of what is happening across the services that the Government is responsible for delivering.

That is a helpful question. It gets to the nub of stigma, in that we cannot account for where it will happen. We hope that training will ensure that people deal with people in the way that they would expect to be dealt with, whatever their circumstances. I will take that question away and come back to the committee with a much clearer response.

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I will also reflect on what I was saying about the issue’s importance in education settings. In some respects, you might find that teachers are learning from their pupils and that different conversations are now happening. The work regarding health boards that we highlighted could be replicated in local authority areas. For example, a couple of months ago, I was at an event about breastfeeding and heard how the local council—I think that it was North Lanarkshire Council; I sometimes get my Lanarkshires mixed up—had spent a lot of time working internally and with the health board to understand the best way to give training so as to provide a breastfeeding-friendly environment. We can certainly learn from such initiatives.

I am sure that the committee would welcome more information on the cross-cutting nature of stigma and what more the Government can do to deal with it. I am sure that your ministerial colleagues must see that it is an issue for everyone; not just people who are in health roles.

I want to touch on the HIV transmission elimination delivery plan and the extent to which individual plans across the country obtain data that will help us to understand the timescales. It sounds as though it will be some time before Public Health Scotland will be able to track the progress of such plans and ensure that rich data is available from them. What more can the Government do to expedite capacity at Public Health Scotland to move matters forward? We know that that is crucial, and that understanding the progress of such plans is crucial to seeing how we are doing.

You are right. I always balance up the demand to take action at speed with the need to ensure that the information is as robust as possible. Public Health Scotland has just appointed an HIV co-ordinator who will monitor and manage the situation, which is a positive way forward.

Do you recognise people’s frustration about the need to go faster and to have a better and clearer picture? If we are serious about the ambitious targets that we have set, we will need to have data. As I said in my previous question, we need to be able to mark our own homework, look at our progress and understand where the gaps are. Throughout our evidence sessions the committee has heard that we need to have that data. I was encouraged by the response to my previous question about providing further information, but do you recognise and understand that frustration?

I do, absolutely. That came across in the committee’s evidence sessions. As I watched them, I could see the importance of having that anecdotal evidence. I appreciate that it is not data, but it adds to the data and makes it more accessible. That is why I am pleased that Public Health Scotland has appointed the co-ordinator whom I mentioned. I am also pleased about the collaboration that is happening across the sector. As Dr Clutterbuck said in his evidence, that is not new. In fact, this area of medicine has been a trailblazer in recognising the importance of various elements working together. The health boards, and indeed the whole of the health sector, can look at that.

I understand people’s frustration. Am I working hard to move things on? Yes, I am. Further, I hugely respect the work that was done prior to my taking on this role.

It seems that no other member has further questions for the minister.

I thank the minister and her official for joining us today. That concludes the committee’s formal business for this meeting. We will move into private session to consider the remaining agenda items.

10:49 Meeting continued in private until 11:22.