Learning disabilities projects

The Five Year Forward View sets out a clear vision, setting out the particular contribution that the NHS and others can make to the health of our nation, and the transformation required to meet the changing needs of current and future patients.

The Patient Experience Team, via its process of inclusion and co research and design, will engage people with learning disabilities from the start and will build ownership and credibility into the programme of activity to ensure programmes of work that are valid to a range of people with a learning disability across key areas of NHS provision. This directly supports the work of the Learning Disability Programme Board and Transforming Care mandate commitment.

The current projects within the Patient Experience Team are outlined below. If you would like further information on any of them please contact Sarah Wright, Improvement Support Manager.

The NHS Quality Checkers programme

NHS Quality Checkers is a programme that started in 2014, which has ensured people with a learning disability and/or autism design and creates the right tools that measure the quality of NHS services they use. This builds on current user-led quality checking that has for some time been taking place across social care and more recently across healthcare in England all of which was included in the significant research which has informed the design.

The need to transform the way we deliver and measure care provided to people with learning disabilities and /or autism is a key priority for NHS England. Reports and investigations have highlighted key issues in relation to the quality of care provided and this project looks to address where possible some of the issues that have been raised most recently by the Mazars independent review – Southern Health NHS Foundation Trust (2015).

We have been working with the Centre of Disability Studies (University of Leeds) and CHANGE (a disabled person’s organisation focusing on the equality and inclusion for people with learning disabilities) to develop a supporting toolkit and training materials.

The overall aim is to design tools that can be used in seven service areas:

  1. Emergency Department (a distinct assessment separate from Acute Hospital care)
  2. Community services
  3. Acute hospitals
  4. Primary care (GP’s)
  5. Dentistry
  6. Mental health services
  7. Learning disability services

By working together these tools aim to improve the health of people with learning disabilities and /or autism by supporting and improving access to services, improve the dignity and care provided during clinical practice and reducing healthcare inequalities.

To effectively commission services for people with learning disabilities and/or autism is vital that we work together in effective partnerships to, secure better health and support for local people.

The programme is led by NHS England and championed by Scott Durairaj, NHS England Experience of Care Lead, Mental Health and Learning Disabilities.

LD Always Events

Scott Durairaj, Paul Jebb and Lorraine Wolfenden have engaged with the South Central team following the planning of Always Event interventions in this area. Paul and Lorraine have engaged with IHI and Picker for activity across numerous health care sectors with a special focus on Learning disability being the 49 Transforming Care Partnerships.

The plan developed so far is to have direct intervention and support with the providers, commissioners and ideally People with learning disabilities.

Scott, Paul and Lorraine will be actively involved in the relationship development in the south central area. Please visit the Always events webpage for more details.


We are in the process of identifying learning disability organisations to utilise the toolkits and carry out live trials in NHS Settings across England. If you would be interested in commissioning or understanding more about NHS Quality Checkers and how they can help effective commissioning, we would like to hear from you.

We are aiming to develop partnerships with local clinical commissioning groups (CCGs) and NHS Providers in the aim to test, evaluate and commission NHS Quality Checkers to support the implementation of robust roll-out of the programme during 16/17 and 17/18.

If you operate quality checking in any area, or are interested in establishing a Learning disability Quality Checking service then please get in touch. There are opportunities for people with learning disabilities to be supported to become part of a national network of NHS Quality Checkers with a small number being offered opportunities to be trained and mentored as emerging enterprises; those wishing to take part can make contact with NHS England to request more information and arrange to speak with a member of the team in more detail.

Email: england.NHSQC@nhs.net
Phone: 0113 825 1090

Learning Disability Experience Based Co-Design

In order to improve patient experience for all those who use the NHS, we need to understand better what it is really like to be a patient with a particular condition, and patients need a direct say in planning changes to healthcare that make a real difference to them. Getting patients to tell their story is a good way of capturing patient perspectives.

We also know that showing patient interviews to staff is a powerful way to help them think how to improve care. This is an approach which has successfully been used in Experience-Based Co-Design (EBCD). EBCD is a participatory action learning approach. An important characteristic of the EBCD discovery phase is that it draws on rigorous, narrative-based research with a broad sample of users, rather than relying on a single representative on a committee or a few anecdotes. Equally important is the subsequent co-design phase, in which patients, families and staff come together as equal partners in small change working groups to set priorities for quality improvement, and design and implement change.

NHS England has commissioned The Health Experiences Institute, University of Oxford and The Point of Care Foundation to conduct this work.

Maternity support for parents with learning disabilities

Many parents with learning disabilities lose their children to social services. Often these parents are not offered counselling or support. Having one’s children taken away can have a devastating impact, and the effects are exacerbated for parents with learning disabilities, as they feel further disempowered by the experience. In reality, parents with learning disabilities can be superb parents when they have the right support.

Professionals often do not have adequate or relevant training to support parents in these circumstances, and as a result the parents can find they are disadvantaged or discriminated against through no fault of the parent or the professional. The project will give a platform to the seldom-heard voice of parents with learning disabilities. The partners will work in collaboration to gain a better understanding of the maternity experience of care for parents with learning disabilities.

The end goal of the work will be to support commissioners to ask the right questions of their service providers in this important area in order to improve the maternity experience for parents with learning disabilities. NHS England is working with Patient Experience Network and CHANGE (a national human rights organisation led by disabled people) on this piece of work.

Learning disability patient voices’ videos

We are working with Patient Voices to run workshops to produce short videos on experiences of people with learning disabilities. The aim is to capture the stories of people who have personal experience of being part of something positive. The participants will be telling a story in their own words and with photos of when they have been part of a solution. This includes people with learning disabilities working as staff, volunteers or patients to improve NHS services so we can use to videos to share experiences.