Together advocacy volunteer Catherine Horbury on securing a new role with NHS England and value of lived experience in advocacy

Together has a hugely valuable team of volunteers throughout our services that carry out vital roles as part of our teams providing support to people who’ve experienced mental distress. Catherine Horbury volunteers with Together’s Wakefield Advocacy Hub and provides the team there with valuable insights from her own lived experience as a person with Downs Syndrome and has taken part in co-produced projects for Together. As well as finding time to take up at least two other volunteer roles that we know of aside from her role with Together, Catherine has also just agreed to take up a paid role as an Operations Delivery Network Co-Lead in Yorkshire and Humber for NHS England.

We caught up with her and Volunteer Coordinator Ella Allen to ask about volunteering, the value of lived experience and her new role with NHS England. Catherine first came to know Together Volunteer Coordinator Ella and to get involved with Together at the Patient Experience Group and Lift Up Friends Group which were taking place in Wakefield as part of the Living Well Project. Catherine explained the aim of those groups is to “support service users in Wakefield with a Learning Disability who want to improve their environment”. The Living Well Project was set up by Transforming Care and involves Calderdale, Bradford, Wakefield and Barnsley councils and advocacy services like Together as well as CCGs, self-advocates and service users from across those regions. It is facilitated by an organisation called Inclusion North which supports regional work to include the lived experience of people with learning disabilities and Autism. Catherine and Ella, alongside Neal, a member of Lift Up Friends, and Fiona Sharp, the Strategic Health Facilitator, make up the Living Well Project Group.

One of the main pieces of work at the Living Well Project was developing a questionnaire to ensure the right health checks were in place for service users. Catherine took a leading role on this and told us that “only two or three of the questions were developed by others in the project team and all the others were thought of by me and another person with learning disabilities”. That survey is used throughout the area now and enables service users to express their views on the suitability of the health checks they receive through a questionnaire that is accessible.

A project like co-producing that questionnaire prioritises lived experience as a valuable asset and the importance of that is something Catherine agrees with. In talking about that Catherine described how that “people with learning disabilities have views that matter and they are vulnerable and need to be heard”. She also added that “lived experience is really important to work out the right approach and means people involved gain new skills”. In talking further we learn some of the other skills Catherine has developed and the other volunteering roles she takes on. The skills include doing a presentation to different groups on her life experiences and passing training on presenting to others as well taking responsibility as an associate for organising the meetings for the patient experience groups. The roles as well as working with Together include being a Ward Befriender at Pinderfields Hospital for people with Dementia and volunteering to help out at meal times in a care home locally, which was a new role Ella was unaware of until Catherine mentioned it.

Catherine’s new paid role is as Operations Delivery Network Co-Lead in Yorkshire and Humber for NHS England which she is excited to take up. She will be looking at issues faced by people with learning disabilities in the community and seeking to improving outcomes by looking at accessing services, consistency in care and putting views forward in meetings. As well as looking forward to starting the role Catherine told us she’s recently finished a creative writing course after wanting to do that because of her mother was a good storyteller and who sadly passed away a few years ago. She is also looking forward to Christmas and buying presents as a proud aunt and also to hopefully being able to see her boyfriend who she loves, to give him presents as they’ve not seen each other for 3 months as they’ve both been isolating.

We wish Catherine all the best in her new role and know she’ll bring the same level of enthusiasm and valuable insight to the position as she continues to volunteering with us.