Reshma Patel was a member of the Expert Advisory Group on the NIHR-funded SWOP project and a member of the Steering Group for the Walsall Council/ IMPACT Social Work/Social Care with People Aged 65+ project. Below, she reflects on her experiences as a Steering Group member.
For far too long, we have ignored people aged 65+ in adult social care as they are not ‘seen to be sexy’. I was grateful for the opportunity to be a member of the co-production steering group for the Walsall Council/IMPACT Demonstrator project to see that people at the age of 65+ also receive good quality services from adult social care.
I have had a physical disability since birth and have experienced growing up in an oppressive society. I’ve used health and social care services all my life and experienced both good and bad mental health services. Since 1998, I’ve employed Personal Care Assistants, initially through the Local Authority Direct Payments Scheme and later transitioning to Continuing Health Care Direct Payments and joint funding from both health and social care. I’ve received various services, including physio, nursing, doctors, and social services, and have actively participated in training professional workers from childhood to adulthood. I also cared for my parents, advocating for the best service they could receive. I have led groups through change in the way organisations work with people. This is because I genuinely care about ensuring everyone has equal opportunities to be involved in planning, delivering and monitoring services. This includes often-overlooked voices that are sometimes excluded. I’m passionate about valuing people’s contributions and demonstrating this through change.
I’m often invited to project meetings at universities, organisations and authorities. I’ve wondered if it’s because I have a physical disability, am a minority group member and a female who can speak well. I go into meetings with cynicism, but I don’t share it. I felt the same when I was invited to contribute to the Walsall Council and IMPACT Social Work/Social Care with People aged 65+ Project. My ‘lived experience’ has often been used for others’ gratification, and systems haven’t changed to benefit the people receiving services or carers. But as a participant in the Expert Advisory Group that initially researched ‘Social Work with Older People: Exploring the contribution of social workers to older people’s well-being’, I felt the opportunity to have a voice in its implementation in Walsall was too important to miss! As I too will be impacted by that soon!
Through the research project’s Expert Advisory Group, I was able to influence research methodology, design and delivery. Ensuring that the language used was appropriate; did not victimise older people or see people as ‘cases’ or ‘commodities.’ The research project created a new beginning by measuring older people’s well-being through social worker interactions in two local authorities, emphasising the importance of older people’s voices in research design, ensuring it was needs-led rather than service-led. The group advocated for inclusive language, showing the good, bad, and ugly, and giving older people and carers a stronger voice.
My first experience of joining the IMPACT and Walsall Council Demonstrator Project: Social Work/ Social Care with People aged 65+ was on Microsoft Teams. This was daunting as I had no idea who the other stakeholders were thus was very cautious about what of my lived experience I share when I first join a project. Learned this from previous experience that I need to read the power dynamics and come to my own judgements. I have always been aware that if I’m receiving services from a specific local authority, I need to ensure that I don’t compromise myself by sharing in the wrong tone or coming across as bitter whilst at the same time understanding the importance of professionals hearing what it is like on the ground from a lived experience perspective.
In this project, Lorraine, the Strategic Coach from IMPACT, demonstrated exceptional skill and competence in managing the project effectively. The first few online meetings really helped us get the process going. Staff and people with lived experience worked together to understand and respect each other. Looking back, I realise how important it was to take time during those meetings to let ideas surface from different perspectives, clear communication was key to building commitment and understanding and to ensure everyone was on the same page.
Lorraine was instrumental in creating a safe and open environment for both staff and people with lived experience to share their experiences and feelings. Her expertise in drawing information together and facilitating discussions was highly valuable to me. She shared clear and easy-to-understand minutes and a simple project action tracker. Thanks to her, we were all well-informed and I did not feel intimidated by sharing my lived experience with professionals. I was also aware that she was totally independent from all Council Services, so I was comfortable in sharing my thoughts, experiences and anxieties with her.
Top tips
So, if you are thinking of inviting people with lived experience to your co-production project groups, remember:
- The meeting facilitator needs to recognise how lived experience stakeholders may feel uncomfortable with sharing especially traumatic experiences. Similarly, professional stakeholders may hold back sharing important things if they do not feel it’s a safe environment.
- Create a space where people only share what they are comfortable with sharing and don’t feel pressured to overshare in the co-production space.
- Everyone in the co-production space needs to recognise the trauma associated with the process and facilitation needs to be managed sensitively and with care.
From all the proposed outcomes, the one that stands out for me is that Walsall Council has agreed to trial a Named Worker approach on one of their teams. I clearly remember that there was initially some resistance relating to workload capacity and the impact of social workers having the same people on their workload. However, as time went on, it appears that the wheels have turned and the voice of lived experience has been heard. Now the Council will be reorganising a team of staff to make this vision a reality for one of the local areas. I feel this is achievable because we had staff on board who had previously made this change on a different team. This shows the importance of having passionate staff on board who believe that a culture change is necessary. There is a genuine commitment from senior staff to do things differently and improve services through understanding and implementing changes based on core principles of co-production.
I advocate for equality, accessibility, diversity and reciprocity, which are key ingredients of co-production, along with a safe space for reflection. In my opinion, we have gone through all the ingredients of the co-production spectrum on this project! The final meeting clearly demonstrated how the Theory of Change came into fruition – building safe relationships across adult social care, introducing people from health into the group with a potential ‘blueprint’, and demonstrating how Walsall Council will continue this work through the already developed co-production steering group. This way, we can ensure progress is made and the commitments are followed through.
Written by Reshma Patel
Co-Chair of Experts by Experience (EBE) forum UK, active member of BASW Council and England Adult group.
Member of WM ADASS Co-production Advisory Group
Member of Walsall Council’s Strategic Co-production Advisory Group