Engaging in social action: views from the APPG on complex needs and dual diagnosis

How can people experiencing multiple needs and the organisations that support them take part in social action? David McCormack, Engagement and Co-production Worker at Fulfilling Lives Newcastle and Gateshead and Nicola Drinkwater, Senior Policy Officer at Clinks reflect on a recent opportunity to explore these issues as part of an oral evidence session held by the All Party Parliamentary Group on Complex Needs and Dual Diagnosis.

In April the All Party Parliamentary Group (APPG) on Complex Needs and Dual Diagnosis, in partnership with the Office for Civil Society, put out a call for evidence asking how social action can “drive better services for people with complex needs by improving outcomes, preventing crisis, reducing stigma and developing more responsive and joined up services.” They used a broad definition of social action as “people coming together to help improve their lives and solve the problems that are important in their communities.”

David works for Newcastle and Gateshead Fulfilling Lives, a Big Lottery Fund-supported partnership working with people experiencing multiple needs (photo: smlp.co.uk, used under CC BY  2.0)

From our work to date, we knew there are many great examples of where people with lived experience of multiple needs are involved in social action. To inform our submission, Making Every Adult Matter Coalition (MEAM) put out a call for case studies and we were appreciative that so many people responded to tell us their story of how they, or their organisation, involved people with lived experience in social action.

MEAM submitted our response to the call for evidence (PDF) at the end of May and were glad to be asked to give oral evidence to the committee on 15 July.  In this blog we will reflect on some of the key issues raised during the evidence session.

A range of important voices

David and I were in good company when we gave our oral evidence, and were both pleased that people with lived experience of multiple needs were there to talk about their views and experiences.  The other panellists included:

  • Sarah Robinson, Research Manager at CFE Research
  • Andy Wilding, Inspiring Change Manchester
  • Paula Harriott, Head of Involvement, Revolving Doors
  • Tim Sampey, CEO Build on Belief
  • Dr Michael Taylor GP, York House Surgery

During the morning we heard many examples of fantastic ways that people with lived experience had been involved in social action and the positive outcomes this had achieved. However, taking part in social action isn’t easy and people with lived experience of multiple needs can experience many barriers to taking part. We spent a bit of time exploring this when we gave our oral evidence.

I began by outlining some of the barriers people can experience in relation to engaging with social action, which often stems from the stigma and discrimination they face, as they can be perceived as a ‘problem’ or just as a ‘service user’, rather than someone who is an expert due to their experience.

One person who submitted a case study to MEAM said “we often have the feeling we are not taken seriously, and some organisations are unable to see our potential – seeing us only as service users, not service designers.” They felt that this led to an unwillingness for decision makers to listen and act upon new evidence and information.

David reflected on this, and highlighted that through his work he had seen examples of where it had taken considerable time for someone to transition from the role of ‘service user’ to ‘volunteer’ or in some cases ‘member of staff.’ He therefore stressed that during this transition time both the person with lived experience and the existing staff working for that organisation need support to ensure that this process can take place effectively.

David and I spoke about the barriers to social action that can exist within services (including those in the voluntary sector), which can include: staff apprehension; concern over hearing difficult voices; and role adjustment issues. Sometimes staff can feel uncomfortable or even threatened by services users voicing their opinion.

David went on to say that there is sometimes an assumption that people with lived experience of multiple needs will automatically want to engage in social action with the service they have received support from. In some cases this may be true, but in others it is more beneficial for the person with lived experience to engage in social action with an organisation they have not previously had contact with.

The solution to many of these barriers rests in early, clear communication about the role of social action, availability of training for staff and the development of clear policies and guidance.

Employment – an outcome for everyone?

As the final speakers, we were able to reflect on what everyone had spoken about before us. We both agreed with the issues our fellow panel members had raised in terms of employment; that it can take years before someone is ready for employment and after this takes place they are likely to need additional support and training. During the panel discussion Andy from Inspiring Change Manchester spoke really powerfully about the support he had received through the GROW Traineeship and how he has developed his skills to help him work in an office environment – something he didn’t have any experience of before.

During our reflections, David asked a key question: “When does a person stop being someone with lived experience and start being a professional?” Of course, these are not mutually exclusive as you can be a person with lived experience and a professional, but David was keen to highlight that someone with lived experience is no different to any other member of staff working for an organisation. We all have challenges in our lives that we may need additional support with or that require our employer to be flexible. It is important that any employee is respected and seen as a person first, rather than a person with multiple needs.

The session confirmed that social action plays a vital role in driving better services for people with complex needs, reduces stigma and develops more responsive and joined up services. But it can also provide a practical opportunity for individuals to move on from their own experience of living with multiple needs and take ownership of a new future.

Where next?

The APPG is planning to host a roundtable with government ministers to inform them of the issues raised in both the written and oral evidence. We look forward to receiving an update about this work at the next meeting of the APPG and are both looking forward to continuing to work with the group on this important issue.

If you would like to get in touch with us about anything raised in this blog, please email Nicola Drinkwater at Nicola.drinkwater@clinks.org

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