I am very proud to have been part of the work which the ‘Principled Way of Working, Peer Support in Sussex’ video and associated report (Alison Faulkner, 2021) describes and reflects on. Both the video and the report look back at the work of the Principled Ways of Working Network, a partnership of 13 voluntary and statutory organisations across Sussex.
I remember a particular turning point in my understanding when I realised the responsibility that we have as service user-led providers of peer support, to support the service users who were beginning to lead the development of peer support within Sussex Partnership NHS Foundation Trust (SPFT). Baljeet Sandhu would explain this as Leadership of lived experience in Social change (see the LEx Movement website). Some programmes to develop peer support in the NHS are led by professionals, although we are seeing more and more organisations employing people with lived experience to lead these programmes. The key to partnership working in our experience was recognising the need to support the challenges which our peers within SPFT face when establishing service user leadership. More persuasion is necessary at many levels to convince provider organisations, practitioners, and indeed policymakers, that lived experience can lead the way (see the 2019 report from LEx Movement). Of course, some professionals within SPFT and the third sector have a combination of different perspectives as they have used services and are employed as professionals within the complex NHS system.
Everyone within the partnership understood the principle that peoples’ lives can be saved through peer support. Members of the partnership understood that the quality of life of people who are troubled or in trouble, isolated and in distress can improve with the help of peer support. Different models of peer support have been developed by different partners, but share the common principle that people with similar experiences of mental distress offering to be alongside others who are in distress is mutually beneficial. Such volunteers saw their role as temporary or transitional not as ‘work’. Others saw the nature of peer support differently which resulted in some third sector and service user led organisations employing skilled and talented service user leaders to organise and co-ordinate the volunteers. Some third sector provider organisations that were able to enter the ‘tendering process’ could pay or employ peer support workers for their time (although rates of pay and terms and conditions sadly vary greatly). Currently the design and delivery of peer led training, accredited or otherwise, coordinating support by matching people, offering peer led quality supervision, whether on a 1 to 1 basis or in groups, is becoming more commonplace amongst those who provide peer support across the board (see the 2020 report on Peer Support: Working With The VCSE Sector.)
SPFT employs peer support workers who work within a system where employment rights and service user/patient safety are a critical duty. Transparency and accountability of public funds in the NHS is compulsory. Therefore, you can argue that whoever in the NHS started to develop peer support the ‘transition to service user led/peer led’ has to happen whilst incorporating the myriad of duties expected within the NHS. Some of the partners had to seriously answer the question: is it better to stand alongside colleagues’ than to be outside criticising? This is where we see difficulties and complexities arising, such as the requirement for peer support workers to undertake mandatory training in health and safety, meaning that some peer workers have to be accountable to clinicians and have access to people’s care notes, for example. So rather than standing outside the NHS with our service user- or peer-led models of peer support, in fact the real duty was to come together to call ourselves ’providers of peer support’. This was to end the squandering of energy by constantly asserting that our model was right and everyone else’s was wrong.
Without doubt some of the bravest and courageous individuals I have worked alongside within the Capital Project (service user led organisation), Together Working for Mental Wellbeing (national 3 sector organisation), National Survivor User Network (NSUN) and in a governance role within SPFT have been those who’ve begun to establish leadership from their personal insight of ‘what works and what hurts’. I could even say that leadership of this type originally (20 years ago) could come at the cost of personal wellbeing, whereas our partnership demonstrated that, by working together, we are there to support each other’s wellbeing, which becomes peer support in action.
Given the vital importance of the partnership vision that peer support should be available for all who seek it and could benefit from it, it was obvious that to meet such a vision ‘scaling up’ peer support must primarily focus on and address health inequalities? People in some communities have been marginalised; in short provision must not just be for the general population but for specific people in the community with specific identities.
Commissioners must therefore take on board and act on two major challenges which the Sussex peer support partnership are clear about.
Firstly, small, micro, peer support providers have to be funded and developed so they can provide the specific very localised support within communities based on how people identify themselves. Such small groups must be supported and developed directly or possibly indirectly through being hosted, but the key is for them to remain independent. Whatever support is necessary must be provided, to be accountable to organisational governing bodies and regulations. Without tackling this first issue, health inequalities will not be addressed within peer support provision.
Secondly, commissioning a range of peer support at an Integrated Care System and strategic level has to develop its authority to do so, through understanding what models of peer support work for whom, when and where. Of vital importance to the partnership, was raising awareness that small local providers are better placed to understand and access marginalised communities.
Our Principled Ways of Working partnership is committed to gaining resources to evaluate what works for different people in peer support, when it is best provided and where, so we can then (based on evidence) direct all of our energy and resources in the right ways. It would be unthinkable if commissioners were to continue to invest at any level without being able to answer the above. Without this intelligence it could even be said that peer support provision may sustain existing health inequalities.
The partnership was successful in harnessing the energy and insight of service users and their experiences to lead the peer support agenda; we understood how urgent the need was to articulate that necessary resources and steps are needed to direct investment around peer support within the whole health economy. Hence the partnership is looking at giving guidance to commissioners. We must develop a framework which will play a similar role to the National Survivor User Network (NSUN) 4Pi framework around participation standards. Locally the partnership will initially re-establish an independent peer support network, which can develop signposting in the truest sense.
The ultimate aim of the partnership has been to ensure ‘patient choice’ round peer support, signposting to what most likely will work for people based on a diverse and detailed map of what is available locally (all of whom work in a ‘principled way’ – see the Peer Support Charter). We are currently seeking funds to roll out a robust (service user or peer led) evaluation of peer support in our communities.
One day soon, hopefully, peer support will meet the needs of the magnificent diversity that exists in the communities this partnership covers. This report and video are a graphic illustration of the beginnings of what’s possible when service users across the sectors work in partnership to provide leadership.