Consultation response on behalf of Fast Track Cardiff and the Vale (September 2022)
Fast Track Cardiff and the Vale welcomes the draft HIV Action Plan for Wales and would like to acknowledge the hard work and commitment from all concerned in its development. We would like to personally thank Dr Marion Lyons, Stephen Thomas and the members of the HIV Action Plan Working Group who helped create the action plan in addition to their existing workloads.
We are grateful for the opportunity to provide comments on the draft plan and would also like to applaud the leadership that Welsh Government have shown in setting out their aspiration of developing the plan within the Programme for Government and delivering on that promise through the publication of this draft.
Fast Track Cardiff & Vale has worked for almost three years with our partners with our host Pride Cymru and our partners Cardiff City Council, Cardiff University, Cardiff & Vale University Health Board and committed individuals who are passionately committed to making a difference to people living with HIV and achieving the goal of zero new infections by 2030.
We commend the ambition of the plan and are very happy with the proposal that Fast Track becomes a key component in its delivery.
- Do you agree with the five overarching actions identified within this plan? Are there other overarching actions that should be included?
We support the overarching priority areas and principles outlined within the action plan. The provision of a solid foundation for the development of services and initiatives through the underpinning of three principles is also a positive development.
In particular, the establishment of Fast Track Cymru gives an opportunity to establish a collaborative body to drive progress, roll out good practice, foster smarter working, knowledge sharing and efficiency of resources while avoiding duplication and capitalising on local expertise. Working together in Wales in a co-ordinated approach will support the achievement of the ambition of the plan. This approach will also facilitate the management of co-ordinated roll out of initiatives across the country which may potentially be significant in the avoidance of systems becoming overwhelmed.
However, in order to create further vibrant Fast Track Cities/Regions there will need to be concerted effort to foster collaboration and in particular to grow the existence and inclusion of civil society organisations, given the current paucity of these in Wales and the related lack of recent external collaborations and joint working for some existing clinical services. It will be important to show the benefits of working in this way; there is substantial evidence that the inclusion of community organisations in HIV work can increase access to underserved communities, improve uptake of prevention and care and enhance awareness. Capitalising on this partnership model to deliver the outcomes detailed within the plan will clearly contribute towards the achievement of the vision.
The funding and development of an all-Wales sexual health case management system is a very positive step. We would echo the comments relating to the ownership and oversight of these systems lying with Public Health Wales (PHW). It is clear from the work that has been undertaken thus far that the expertise and leadership of PHW should govern the development of a robust surveillance system for Wales. Feedback from both people with HIV (PLHIV) and clinicians strongly suggests the importance of explaining how this will work to support PLHIV in order to maximise support. We would suggest establishing a small expert community group of Welsh PLHIV to work in partnership with PHW on the design, integration and use of the case management system. We believe this would maximise the acceptability and understanding of its ethical use to other PLHIV.
The establishment of an Oversight Group with the aim of ensuring effective scrutiny and driving progress against all the actions listed within the plan is key. The reporting of evaluation and monitoring of progress as well as highlighting specific challenges to Ministers will demonstrate credibility and ownership of each workstream. Additionally, this approach has the potential to send a clear message to those living with HIV in Wales that Welsh Government is committed to the plan.
- Do you agree with the proposed list of actions? Are there any that you would add or remove from the 26 currently identified?
We welcome all 26 actions listed throughout the Action Plan and appreciate the extensive work that has taken place to arrive at the draft detail. Any suggestions relating to the detail of any specific action should be read in the context of full acknowledgement that the draft is not the finalised plan. Following involvement with and discussions with our Steering Group members we offer the following comments:
Priority 1: Prevention
Wider awareness and use of PrEP by all those who need it within diverse communities is an important factor in the journey towards the elimination of HIV transmission within Wales. Local authorities and community groups have a role to play in supporting this through a range of services and interventions.
Support for greater uptake of PrEP by all those who need it must include raising awareness of its existence and uses alongside improving access. All Health Boards should have care pathways in place to support this which reach a minimum agreed Wales-wide standard and reduce current high levels of postcode lottery in accessing PrEP.
Funding and resourcing of a shared care model will be vital to success. We would also urge that a deadline of Spring 2023 for the availability of PrEP in GP and community pharmacies.
Priority 2: Testing
It is clear from the evaluation report for the initial ‘Texting for Testing’ pilot within Cardiff that this represents an opportunity to ensure that messaging is effectively communicated to communities in innovative ways while supporting personal decisions as to whether to test. The pilot shows that this has a positive effect on testing uptake and captures positive diagnoses including late ones (a particular issue for Wales). It also has a secondary impact in ensuring that GPs are reminded of modern HIV realities. The extension of this scheme is to be welcomed and must be resourced effectively to ensure the supporting infrastructure meets the amplified demand.
Building on this model, we would encourage Welsh Government to formulate strategies for integrating HIV messages and initiatives within other existing services. This could be both an effective way to raise awareness and normalise conversations about HIV while being more cost-efficient than always developing separate approaches from scratch.
We welcome the opportunity to be an active partner in raising awareness and working towards amplifying key messaging across communities throughout HIV Testing Week. Digital and non-digital elements should be considered within the communication planning in order for those who may be digitally excluded by choice or otherwise, including older people, to be reached. However, it is vital that this health promotion intervention is informed by an agency with social marketing expertise and access to a wide range of channels across Wales, appropriately resourced and developed with reference to the specific Welsh context.
There are opportunities for local authorities to support the tackling of inequalities in relation to testing access and click and collect services. Local authorities provide free access to public computers with networked online access as well as free Wifi throughout a network of over 300 public libraries within Wales, as well as wider community venues. ‘Click and Collect’ could also be explored within these venues as well as targeted areas such as homeless services and community venues.
In Section 11 we would suggest that Higher and Further educational settings are added as they provide an additional opportunity to engage and increase participation in HIV Testing.
Priority 4: Living Well with HIV
The efficacy of antiretroviral therapy and the success of treatment programmes has meant that, provided individuals have access to care, HIV infection is no longer a life-limiting infection. However, with this success comes unexpected consequences: a growing population of older people with HIV, normally defined as those aged 50 or older. This population is increasing as younger PLHIV are surviving and an increasing number of older people are acquiring HIV. Consequently, prevalence and incident infections in people aged 50 years and older are increasing at a faster rate than in the population as a whole.
The key problems identified repeatedly by social research for older PLHIV are threefold; managing their HIV alongside increasing numbers of comorbidities; poverty due to lack of financial opportunities when younger; and social isolation due to loss of peers and stigma. It will be important to ensure that services for people with HIV understand these issues and address them alongside services for older people in general.
The national peer support programme for Wales will be commissioned by Welsh Government in the autumn of 2022, following the conclusion of research work carried out by Cardiff University on the potential principles and structures of such a programme. This development is key to ensuring the people living with HIV in Wales are supported. It is extremely important that any such service is led by people with HIV as well as informed by them.
Given the low numbers of people with HIV in some parts of Wales and the decreasing numbers of new diagnoses, it will be vital that services are created which provide digital as well as face to face support, and which do not exclude underserved communities. It is understood that a stepped or diverse approach to peer support will be necessary and this may offer room for local authorities and community groups to host some services or meet-ups.
We also welcome the opportunity to work through Fast Track Cymru to establish effective ways of reaching underserved communities across Wales.
Priority 5: Tackling Stigma
We welcome proposals for the provision of HIV awareness training to the social care sector and look forward to seeing the details of the delivery plan.
In addition to health care providers, social care workers and schools, we would like to see HIV awareness training extended further to include wider local authority staff in other front line services. Local Authorities are one of the largest employers in Wales alongside health services.
It would be helpful if evidence-based teaching is supported to ensure increased knowledge around prevention as well as tackling stigma within schools. It is our understanding that there are Welsh Government plans to create a bank of Relationships and Sexuality Education code (RSE) resources on Hwb. Oversight and monitoring of the evidenced based approach by the HIV Action Plan Oversight Group is potentially key to ensure that young people are given the right information at the appropriate time.
We welcome the opportunity to be a collaborating organisation to ensure that awareness of stigma and the promotion of positive messages such as U=U and zero tolerance is a common and ongoing thread throughout all the actions that we make a commitment to.
We also welcome the proposal for a recurring Wellbeing Survey of People Living with HIV to monitor whether change is effective and experiences of stigma reducing. This is important to ensure that the action plan is heading in the right direction or identifying areas that may need further work from the viewpoint of the most important stakeholder – those that are living with HIV.
- What are the challenges that could mean the commitment to eliminating HIV transmission by 2030 are not met? Are there any clear challenges relating to any specific actions you feel should be highlighted?
- Sufficient resourcing of all action delivery plans
- Identifying and reaching underserved communities
- Existing pressures on public services and the third sector – it is important that capacity is built in to ensure the aspirations of the plan are achieved.
- Ensuring the right message reaches the right people – all forms of communication networking should be considered
- Ensuring that the national initiative is not lost at local level through failure to include in planning and resourcing (e.g. in IMTPs)
- Lack of clarity over who is responsible for what; in particular, the way in which sexual health and HIV frequently falls between local and national public health and between public health and GPs
- Are there any resources (this could include funding, staff time, training, access to support or services among other things) that are not referred to in our Plan, but will be necessary in achieving the aims and actions detailed within this Plan?
The development of far-reaching promotional and media campaigns focusing on key messages around prevention, tolerance, dispelling myths and testing across Wales would contribute to wider awareness and positive change. It would seem sensible to include a reasonable provision within the financial planning for this work.
- We have asked a number of specific questions. If you have any related issues which we have not specifically addressed, please use this space to report them:
Currently, the Plan is understandably broad. To monitor progress as stated, it will need measurable KPIs, milestones, deliverables etc for each aim within the final document. Timelines and key persons responsible for each area would also help to monitor and evaluate progress as well as maintain accountability.
In 2021, Welsh Government published ‘Age Friendly Wales: Our Strategy for an Ageing Society’, which commits Wales to the development of age-friendly cities and communities across the country.
With this focus in mind, as well as understanding that more people are living into older age with HIV, it would seem appropriate to have more focus within the plan specific to older people that acknowledge and work towards overcoming factors that risk their individual wellbeing. We have referred to this in the Living Well section but to elaborate further, areas could include:
- targeted age-friendly preventative programmes,
- targeted financial advice and support
- tackling loneliness and isolation strategies, as many current strategies are not geared toward the LGBTQ+ communities and those living with HIV.
- targeted clinical support and cross-training as many people ageing with HIV have other health concerns and co-morbidities.
The most important predictor of morbidity and premature mortality is late diagnosis, and that late diagnosis also increases the risk of onward HIV transmission. Our understanding is that older people are among those most likely to be diagnosed late. The plan must work with Health Boards, Local Authorities, Housing Associations etc to develop and deliver targeted efforts including promotional programmes to reduce the number of late diagnoses in older people, as well as support for those who have been diagnosed.
On another front, we believe it vital that a system be set up across Wales to follow up every late diagnosis to ensure that lessons are learnt as to how this might have been prevented and allow services to better target their testing and messaging work; and that consideration should be given to ways in which contact tracing might be enhanced and clear standards set across Wales, given the relatively low number of new diagnoses nationally and the target (reachable for Wales more than any other UK nation) of zero by 2030.