Healthwatch Cumbria is supporting the development of a bold new plan to improve the lives of people with learning difficulty

Healthwatch Cumbria (HWC) as a result of regular engagement with people with a learning difficulty over a number of months became increasingly aware that their experiences reflected a substantial variation in terms of access, choice, and quality of services they were able to access across Cumbria.

As a result ‘Everyone has a Voice – What does a good life look like?’ was developed to specifically explore those experiences.

The responses gathered from the participants were frank and to the point, particularly from the people with learning difficulties highlighting both positive and negative issues they encountered in their day to day lives.

The underlying theme was that many felt they had insufficient choices and control over their own lives, with over a third of those spoken to feeling that they needed better support overall, and access to training and employment opportunities.

They weren’t alone with many service providers and staff highlighting specific concerns relating to dwindling support for people with learning difficulties and their families due to funding cuts across the board.

A key question raised is whether there is an acceptance of ‘a good enough life’ rather than ‘a good life’.

As a result the project set out to examine a range of view points to better understand what is working well and what could be improved to make service provision better for users including:

  • People with learning difficulties
  • Parents/carers
  • Commissioners
  • Social workers
  • Service providers and staff

The findings from the project will now be used to inform the work programme for the refreshed Learning Disability and Autism Partnership Board. That it would also inform the agenda for a symposium to be held with all key organisations and relevant people to provide an opportunity for a thorough exploration of what is working well and to consider options for improvements.

As one participant said: “I would like people to listen to me more about decisions that may affect my life.’’

This is hugely important when you consider there are 9,409 adults (18+) with a learning difficulty across Cumbria, there are 2,614 people (of all ages) on GP registers with a recorded learning disability, that there are 1,675 people in regular contact with Learning Difficulty and Autism services across the county, 22 people with a learning disability and/or autism are recorded as inpatients in NHS hospital beds in Cumbria and 1 in 5 Adult Social Care (ASC) recipients have a learning disability.

HWC worked with a wide range of people to better understand how service delivery has changed, identify where there are problems, where service delivery could be improved and to highlight examples of good outcomes for people with learning difficulties.

In total, HWC engaged with over 540 people, of those over 120 people were spoken to directly, there were also 109 responses to the online survey and a further 54 people were engaged with during the pilot phase of the project.

The results garnered have provided a powerful insight into the extent to which people with learning difficulties often accept the status quo but at the same time it has also provided a seam of rich information, which has already prompted further discussion and debate as to how service provision could be bettered for the future.

David Blacklock, CEO of Healthwatch Cumbria, said: ‘’Healthwatch Cumbria recommends that the report’s findings should be used as a platform for change to shape conversations about service improvements for the future. This is a real opportunity to enhance the quality of life for service users and their families and carers, allowing them to enjoy more fulfilled lives in line with the Citizenship and Best Life models developed by Simon Duffy and People First Independent Advocacy.’’

David added: ‘’The findings support the idea that people who use services in Cumbria generally have a high level of contentment about services and their lives. However, this may partly reflect a lack of a meaningful reference point as to how to judge what may constitute a ‘good life’ or a fulfilled life.

Using the modelling frameworks of the Best Life Models and Keys to Citizenship offers a ready-made filter through which to view the quality of people’s lives. It is far from conclusive but provides a prompt into deeper reflections on the future of learning difficulty services in Cumbria.’’

Cumbria County Councillor, Peter Thornton, portfolio holder for Health and Care Services, said: “This report is  a great reminder that there is still much we can do to ensure that people with a learning disability are treated as real citizens of Cumbria and given every opportunity to take part in all the activities that this involves.”

The key issues and questions for debate and considerations for the future development of services are:

  • To what extent is there is an acceptance of ‘a good enough life’ rather than ‘a good life’?
  • How can people with learning difficulties have more choices and control over their own lives?
  • How can people with learning difficulties and their family carers be more involved in the nature and
  • Delivery of services?
  • How can more support be provided to people with learning difficulties in relation to; travel and to drawing down support from social workers
  • How can more support be offered to families and carers?
  • What can be done to help employers be less fearful of employing people with learning difficulties?
  • How can people with learning difficulties be supported to have intimate relationships or friendships?
  • How can better communication between Adult Social Care (ASC) and health services be achieved?
  • How can resources be better used to address financial pressures on services and individuals?
  • How can people with learning difficulties be better cared for by health services?

There will be opportunities to do this through the Action Plan for the refreshed Learning Disability and Autism Partnership Board and through the HWC Symposium which will bring the full spectrum of people and organisations involved in this service area together for informed debate with clear consideration of whom and/or which organisation is accountable for the delivery of the resulting actions.

This would in turn enable HWC better understand what level of support those with learning difficulties were currently receiving, actually needed and what they wanted to help them live their best possible life.

Which is especially poignant after one project participant highlighted the following:  ‘’We are all entitled to the same opportunities as everyone else.’’

To view the full report please click here

To view the easy read report please click here

For more information about Healthwatch Cumbria click here