Tackling inequalities experienced by people with learning disabilities

Pat McGuinness

Pat McGuinness

Pat McGuinness
Guest Author
Pat McGuinness is the Deputy Director of Integration working at Mersey Care NHS Foundation Trust.  Pat is passionate about working with system partners and communities to enable greater integration at...
Nadeen Haidar

Nadeen Haidar

Nadeen Haidar
Senior Manager
Since joining the team in May 2019, Nadeen has worked on Liverpool’s 100 Day Challenge; bringing people together from across the city to improve life chances for young people, Waltham...
Elena Sabatini

Elena Sabatini

Elena Sabatini
Senior Consultant
Since joining the team in September 2018, Elena has led programmes including the Liverpool 100 Day Challenge, bringing people across the city together to improve life chances for children and...
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How a group of people with lived experience of learning disabilities, practitioners and system leaders are working to tackle inequalities experienced by people with learning disabilities.


It was most important to to press ahead

A team of frontline practitioners and carers in Aintree came together to generate ideas on how they could improve outcomes for young people with learning disabilities (LD) in the neighbourhood, supported by the People Powered Results team at Nesta . The ideas the team generated were informed by local data as well as the voices of people with or who work with people with LD at a citywide event in April 2021.

Over 16 weeks, the team in Aintree worked together to bring the ideas they generated to life, learning along the way about how they can better collaborate to improve outcomes for young people with LD in the neighbourhood. The work involved a wide range of organisations and people, including NHS Merseycare and South Sefton, Aintree Primary Care Network, Mencap, Citizens Advice, Wings Care and Liverpool City Council. 

“I am quite proud to be at the frontier of this change.”  – Participant, Week 8

This work was part of the NHS England’s ‘Complete Care Communities’ programme. The programme is being piloted in a number of local places around the country to work with Primary Care Networks to identify the key health inequality challenges faced by local populations, in particular those associated with the wider determinants of health, that require collaborative working with local councils and other agencies.

“We were acutely aware that this population had not been supported as well as they could have been and that the pandemic was already amplifying unmet need and inequality. Despite the challenges of delivering routine services during a pandemic, we felt it was most important to press ahead with this additional work to start to address the inequality and empower our population.” Mark Wigglesworth, Project lead, GP

A few highlights on what the team achieved in 16 weeks:

  • Tested running a Dragon’s Den event to encourage young people with LD to pitch their ideas on how to make things better
  • Lined up a Panel of Judges representing the local system (Primary Care, NHS Trust, Local Authority) to participate in the Dragon’s Den event
  • LCC ran disability awareness training adapted for healthcare professionals for staff in Aintree GP practices
  • GP practices in Aintree are working together to make the most of annual health checks: adapting the template, timing and location to make a more personalised offer
  • Lisa spoke about her experience at the first Liverpool Learning Disabilities Workshop in April and she is now working with Mersey Care NHS Trust to redesign how we support young people with learning disabilities through transition to adult services

I feel like my mind has expanded

During the 16 weeks participants experienced peaks and troughs as they tested and learnt about what works and stepped out of their comfort zones. Over time people noticed changes including a significant increase in working with people they wouldn’t normally work with.

“The current landscape encourages people to work in silos – it’s been challenging and rewarding to blunt those edges.” – Participant, Week 4

People reflected on the learning they have gained through working with people they wouldn’t normally work with and the value of working with people with lived experience:

“I’ve learned loads through this work. I feel like my mind has expanded. I am appreciating what others can bring into such work. There is so much expertise that we weren’t tapping into.” – Participant, Week 16

“Working with people with lived experience has been so beneficial in seeing things through their eyes and this has helped to inform the work we are doing.” – David Warwick, Neighbourhood/Network Lead, Integrated Care Team, North Liverpool

“Through our conversations and listening to service users, a richer picture emerged. I learned so much (including the intricacies of editing a podcast as I was interviewed by one of our service users!)” – Mark Wigglesworth, Project lead, GP


People we met along the way

Lisa shared her experience of transition from children to adult services at a citywide event for people with LD, carers and practitioners we held in April. During the event Lisa said: “Things would have been very different for me if: 

  • There was more help from an earlier age.
  • There was an understanding that we all want different things.  
  • When young people are starting the transition process what they want at 14  may be very different from what they want at 19! 
  • The young person is in control and not the parents.
  •  You talk to the young person about the reality of things and about how things can go wrong, this will help them in the long run.” 

Since then, Lisa has been working with Mersey Care NHS Trust to redesign how we support young people with learning disabilities through transition to adult services. 

“One of the city wide events really brought things to the fore in terms of the importance of needing to work in a much more integrated manner when one of the service user representatives talked about their lived experience and how things had been difficult for them in so many ways transitioning from children to adults services and that they hoped by being involved in our work at Aintree that they may be able to influence how things should be for other people who are transitioning in between services.” – Pat Mcguinnes, Deputy Director of Integration, Merseycare

Aaron

We met Aaron, who inspired people and practitioners by telling his story about creating his own podcast and website and sharing his vision for people with learning disabilities.

“I want young people with a learning disability to have the same opportunities as everyone else – we deserve to be treated equally and with respect” – Aaron Mckenna, Citywide event speaker and attendee

Journey Through The Pandemic With Aaron Mckenna (wordpress.com) also features interviews with people and practitioners who took part in the work in Aintree.


Our project group is merrily plodding on to achieve our goals

The team of practitioners and carers in Aintree have continued to meet and work together to run coffee & cake sessions to support participation, a Reverse Jobs Fair focused on supporting people into employment and more as their learning evolves.

“We have developed a project plan and have dates to work towards for our engagement/listening events and reverse jobs fair and our project group is merrily plodding on to achieve our goals” – David Warwick, Neighbourhood/Network Lead, Integrated Care Team, North Liverpool

Key learning around what it takes to nurture collaborative working has been shared with Liverpool’s Community Integration Group to scale this in other Liverpool wards and the long-term city plan. The leadership group have also committed to continue bringing people across the city together regularly as a Liverpool Learning Disability network.

“One of the key impacts is that the city wide sessions have enabled the learning from the Aintree trailblazer site to be shared with a view that we could then scale up learning across the city as part of a sustainable model.” – Pat Mcguinness , Deputy Director of Integration, Merseycare 

The work in Aintree is feeding into a national evaluation so that learning and best practice can be shared and propagated on a national scale along with the other 14 demonstrator sites that are part of the Complete Care Communities programme

“The lasting impact is via the relationships I have built up with the many people I have had the pleasure to meet on this journey – those with lived experience and those committed people who are working with and caring for people with a learning disability.” – David Warwick, Neighbourhood/Network Lead, Integrated Care Team, North Liverpool


Are you working to make things better for people with learning disabilities locally? We’d love to hear about your experience and to chat about how we can work together to do more of this work. Get in touch.

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