“It helps my brain. Sometimes it’s a bit hard on my brain”: My experience of co-production with Research Net

Greenwich Learning Disability Research Net is a group of Oxleas staff and Oxleas service user volunteers who work collaboratively to help improve and deliver services. The group is based on the principles of co-production and describe themselves as:

“A group of people who volunteer once a week. We come together to talk about Oxleas services to make them better and more accessible. We want to help people with learning disabilities and their carers to feel less isolated. We want to be more involved in our community. We think people underestimate people with learning disabilities”

We currently have seven volunteer members (and are in the process of recruiting two more) and staff from Greenwich CLDT including Psychology, Speech and Language Therapy, Occupational Therapy and Social Care. The group promotes self-advocacy; people speaking up for themselves and being in control of their own lives.

When our Research Net group first came into being, we recruited volunteers from CLDT team meetings, community groups and Oxleas Learning Disability service user events. We held a welcome day to present information about other Research Net groups and research projects and people discussed their ideas and hopes for the group. These included: being safe, no bullying, not getting shh-ed at, being successful and other people being polite and understanding us.

Research Net focus on one project at a time which is based on an issue that is important to the members. Our previous projects have included:

- A sexual health clinic consultation: We talked to CASH staff about how to speak to people with a Learning Disability about sexual health.

- First impressions: What service users want from the first time they go to CLDT.

- Top Tips: Tips for how doctors should treat people with Learning Disabilities.

- Have Your Say Day: Helping to organise and run a Have Your Say Day run by RBG social services.

- Promoting Research Net: Getting the word out about our group and what we do.

Our current project is called Keeping Safe and we are in the process of creating a leaflet about what to do in an emergency and which numbers to call as we noticed that this is really hard and there is very little easy read information out there.

Other “side projects” the group have completed are training GPs, interviewing CLDT staff for recruitment, doing LDSQ training and some conferences and presentations to share our work.

When asked what they like about the group, the members said:

• “Absolutely brilliant and fantastic”
• “I think it helps my brain. Sometimes it’s a bit hard on my brain”
• “Those who are not good on computers get more training”
• “Wide ranging, cover everything”
• “Presentations and flyers we produce reach out to much more people”

As we think that things can always be improved, we also asked them what could be better about the group. They said:

• “continuing to be friendly and supportive”
• “cup of tea before the group starts”
• “offer other drinks like juice”
• “extra biscuits”
• “a bit more oomph”

As staff members, we have noticed the volunteers developing their skills, increasing in confidence, supporting each other, advocating for themselves and each other and their work is greatly in demand!

We have also faced some challenges as a group though. The HR process of becoming a volunteer is a long and difficult one with the legalities making it hard to make reasonable adjustments. Also, as most of our members have a mild Learning Disability, ensuring our group is representative of all people with Learning Disabilities and making sure that the voices of people with moderate or severe learning disabilities are heard has also been a challenge.

In case anyone is thinking of starting their own Research Net group, the volunteer members have some tips for what makes a good Research Net group:

- “Get ideas from people with Learning Disabilities”

- “Balance of people”

- “Make it fun”

- “Find a room which is big and spacious”

- “No changes to staff”

-“Parties are good- celebrating”

- “Camaraderie”

I will soon be leaving the Trust which also means that I will no longer be a part of Research Net. I am very sad to be leaving the group and will miss it greatly but I also feel that I have learned so much both as a professional and as a person. Attending Research Net every week has been one of the favourite parts of my job and it has been wonderful to see the members grow in knowledge, experience and confidence. They have taught me about the difficulties and discrimination often faced by people with Learning Disabilities and about their resilience, compassion and problem solving. I have seen them comfort each other during personal difficulties and speak up for each other when someone has spoken over them. They have had passionate debates about politics and which picture to use on an easy read leaflet. They have confidently presented their work at conferences and grilled police officers about what training they receive on working with people with Learning Disabilities. I am very proud to have been a part of a group which is taking steps to tackle society’s underestimation of people with Learning Disabilities and I would like to thank the Research Net members for that.

Esther Coroneo-Seaman

Assistant Psychologist

Greenwich CLDT