Co-creation in the West of England Learning Disabilities Collaborative: ‘Done with, not to’

So, what is co-creation? Co-creation is when an organisation or team work with a group of people to create something, particularly when that group will be affected by the outcome, or use the resource or service being created. For example, the NHS might work with a group of people with lived experience, in this case people with a learning disability, to design a leaflet to help others in the learning disabilities community to make healthy food choices.

The West of England Learning Disabilities Collaborative puts people with a learning disability at the centre of everything we do, and that includes involving them in anything we create to support the learning disabilities community. In the past our valued experts-by-experience have worked with us to make online training and meetings more accessible, to prepare for webinars, and to create videos for carers, healthcare professionals, and people with a learning disability. We always strive to ‘work with, not do to’ the learning disabilities community.

Andrew Bright, Head of Development at Thera Trust, is a person with lived experience of a learning disability. Andrew works closely with the collaborative on several projects. To mark Learning Disability Week 2021, Louise George, Senior Project Manager at the West of England AHSN caught up with Andrew to discuss his experiences of co-creation, and working with the collaborative…

Andrew, how would you explain how important co-creation is to others in the learning disability community?

I think co-creation is really important. It is easy for professionals without lived experience to think the things they are doing are great, but there is added value in having people with lived experience of a learning disability work on things that will affect them.

I enjoyed working with the collaborative on creating training and a series of videos for carers, and it was great to be involved in something that was so important nationally.

 Do you think people and organisations do enough to involve people with a learning disability in designing the services and resources they use?

People are making a start, but they are still not involving people with lived experience as much as they could. People need to do more, as many self-advocates would jump at the chance to work with the NHS to make things better.

I feel that the work I was involved in creating the video series and training for carers sets an example of successful co-creation.

 How has your experience of working with the West of England Learning Disabilities Collaborative been so far?

We are still at the start of learning how to work together, but I have really enjoyed it so far. Using Teams instead of emails allows us to have more of a conversation, and work through things we are working on together. The only thing I would like is more advance notice of deadlines; however I know this is not always possible, and I am not put off by this.

I feel that the people are easy to talk to and that my contributions are valued.

What would you like people to know if they are nervous about getting into co-creation?

That there is nothing to be nervous about. I also work with others on co-creation within Thera, and feel it benefits a lot of people. We cannot do things alone; we can achieve more as a team, and people should know that their opinions and contributions will be valued.

To find out more about the West of England Learning Disabilities Collaborative, including signing-up to receive newsletters, please visit our collaborative webpage.

If you or someone you know is a service user who would be interested in learning more about or getting involved in co-creation with the Learning Disabilities Collaborative, please contact with Louise George.

How our Learning Disabilities Collaborative was formed

In this blog to mark Learning Disabilities Week 2021, Dr Alison Tavaré, who is a GP, one of our Primary Care Clinical Leads and South West Clinical Lead for the NHS@home programme, discusses how the idea for the West of England Learning Disabilities Collaborative (WELDC) took shape…

As a GP and a clinical lead at the West of England AHSN I have always had a special interest in the use of NEWS2 (National Early Warning Score) to support clinicians in the early identification and management of the unwell patient. However, the more I used NEWS2 the more I wondered if patients could record observations such as their blood pressure or pulse rate and share these measurements with clinicians to help us decide whether they needed to be seen, and if so by who, and with what urgency. Read more about NEWS2.

Making connections

The idea evolved and I shared it with my brother Ian, and his wife Kate, who are the parents of Toby who has a learning disability and therefore finds it a challenge to tell others when something is wrong. A few months later Toby developed a cough and became very quiet and subdued; while this may not be unusual for many people, for Toby this can be a sign that he is unwell. Kate took a full set of observations, calculated a NEWS2 score of 6 and took Toby to the local emergency department where he was promptly treated for sepsis.

LeDeR (Learning Disability Mortality Review) has identified that not only are people with a learning disability more likely to die of sepsis but on average they die more than 20 years younger than the general population. While this may partly be due to underlying health conditions it is also known that being unable to say you are unwell is another contributing factor.

Sharing Toby’s story

With permission I started to share Toby’s story when I spoke about NEWS2 and soon found there were many others who shared my concern that communication could be difficult if someone who has a learning disability becomes unwell. Anne Pullyblank, the medical director of the West of England AHSN, and I therefore decided to find out if there could be any interest in developing a group where practical ideas and strategies could be shared. We sent a speculative email which immediately generated lots of positive responses, and in 2019 the West of England Learning Disability Collaborative (WELDC) was established. There are now over 300 members from diverse backgrounds and include experts by experience, families, carers and clinicians.

Continuing the WELDC journey

The WELDC has continued to flourish and in the past year alone have delivered webinars on COVID-19, annual health checks, digital solutions and advance care planning. Alongside this there has been lots of sharing of knowledge and expertise and we have even had a question asked in the House of Lords. Most recently we have worked with the NHSE Learning Disability and Autism team to co-create training on ‘soft signs’ and communication which has been delivered to 8000 families and carers.

As there is increasing awareness of the health inequalities experienced by people with learning disabilities, we feel that the WELDC is well placed to support new models of care and look forward to seeing the collaboration continue to evolve and contribute to better outcomes for people like Toby.

Reflecting on our PERIPrem journey

As our PERIPrem (Perinatal Excellence to Reduce Injury in Premature Birth) project becomes part of our wider Maternity and Neonatal Safety Improvement Programme (known as MatNeoSIP), Senior Project Manager, Noshin Menzies reflects on the year she spent supporting the project from her kitchen table and what lessons she’s learnt from launching and managing PERIPrem during a pandemic…

It has been 11 months since I was first asked to reflect on launching PERIPrem in the early days of the pandemic. A year that seems to have lasted a decade and ten minutes simultaneously. I have put off starting this blog post for a while now, as when I was asked to reflect once again on the lessons learned, I was hit with a wave of clichés that seem trite and tired. As the team providing the infrastructure for PERIPrem, we have learned to be agile, to be flexible, to swap offices for kitchens and to home-school whilst facilitating meetings, but this all seems so trivial when we now know what was demanded of our frontline colleagues.

The lessons I want to share are about the skills of knowing when to step back, when to rally teams and when to employ the odd joke to lighten the load in a virtual room. The lessons I will keep with me as we move into the next year of unknowns are those of camaraderie, collaboration and community through laptop screens and the tinny pings of whatsapp messages.

Steering the ship on a new journey

PERIPrem has now transitioned into the Maternal and Neonatal Safety Improvement Programme (MatNeoSIP) and my time as a core crew member has ended, as I move on to other projects and PERIPrem doesn’t need us all quite like before.

When considering this, and what it would mean, I realised that PERIPrem had been the solid ship I and many others needed in the unchartered waters of the pandemic. The strength of PERIPrem is in its power to bring community to teams across the entire region. To individuals working from kitchen tables and to clinicians sitting into offices wearing PPE just so they can share a screen, HMS PERIPrem offers a lounger on deck to sit beside friends, and for a while, focus on the horizon.

The horizon, is of course, healthier, fuller lives for the most vulnerable pre-term babies. Babies who rely on the dynamic of the perinatal team seamlessly working as a united crew to ensure that they and their mothers, receive the very best of care, to give them the best chances.

The plans we made and changed

When we had to rapidly reassess how to launch PERIPrem virtually, when we had dreams of large, vibrant events and working side-by-side with our perinatal colleagues, we faced the unavoidable question of whether we could ask clinicians for their precious time when they were under such pressure.

It became clear, that for many of our colleagues, PERIPrem offered a space outside of the pandemic to channel creativity, innovation and a passion to improve care that they very much welcomed.

Our virtual celebration events will remain with me as such joyous, energy-filled times, where despite being spread across the South West, we were able to feel as though we were all together.  We have collated a vast library of resources, a valuable record of the journey we have navigated, which would not have come to fruition if we were able to proceed as planned.

I feel so proud when I see our PERIPrem logo. It is more than branding, it stands for what is possible when we all do what we can to retain community when physical distance is demanded and an emblem of our collective commitment to reduce brain injury.

What 2020 taught me – and how PERIPrem embodies those lessons

One of the most important lessons we have all learned is that no matter how dedicated we are to ensuring that all mothers and babies receive the very best care, that rolling wave of inequality keeps hitting the side of the ship and making the journey more treacherous for many.

The pandemic for me will be synonymous with a call to action, with a letting drift of the tolerance of social injustice and seeing with newly opened eyes the splinters of discrimination built into our society and thus the NHS.

PERIPrem has always kept this at its core, to look at the myriad ways that women and their babies may be disadvantaged. Now we are able to galvanise this and I am filled with excitement as we firm up plans to be bold and innovative in our commitment to do better for the women and families that need us to hold space for them.

The power of the team

I’m so grateful to the community that PERIPrem has offered us all during the strangest of times. It serves as a reminder that we all share such willing to do the very best for the people in our region. It has been such a privilege to watch how each team has dedicated their precious time to implement PERIPrem, led by such inspirational women, Karen, Sarah, Ellie, Ann, Tracey, Sally and Aless, most of whom were also working clinically alongside steering this ship.

As I reflect on the extraordinary experience of working, mothering and keeping my head above water over the last year, it is with nothing but pride that I can say, “No I didn’t learn a new language, make a sourdough starter or learn how to crochet.”  What I will treasure (show off about) is that I got to be a part of PERIPrem, travel across the South West from the comfort of my dining chair, and learn from the most dedicated, empathetic, energetic and quick-witted team.

Read more about PERIPrem.

Read more about our Maternity and Neonatal Safety Improvement Programme.