Our work with patients with a learning disability

Our work with patients with a learning disability

You said:

We regularly attend the Learning Difficulties (LD) Forum in York. At one of the forums attendees raised a number of concerns around barriers to accessing health care within the LD community, and wanted more information about women’s health and screening.

The main issues raised were around communication to patients with a learning disability, not offering enough time at appointments and understanding of what screening is.

We did:

Working in collaboration with the learning disability (LD) community, a GP and nurse from the Vale of York CCG attended an informative session at the Learning Disability Forum (LDF) CVS on 28 September 2017 as part of a question and answer session around screening, women’s health and what stops people from going to see their GP. 

We listened to the feedback and created an action plan to address these concerns.

We worked with a local advocacy group, the forum and our GPs to take this forward. This work has continued into 2018 and 19.

We are aware that on average, the life expectancy of women with a learning disability is 18 years shorter than for women in the general population; and the life expectancy of men with a learning disability is 14 years shorter than for men in the general population (NHS Digital 2017).

It is important that we focus on health inequalities within this group of our population.

Within the Vale of York if we are able to see service users with a learning disability we can help recognise health problems early, prevent lifestyle issues and help support them with fears around screening.

More information on health inequalities for those with a learning disability can be found here.

We sent out a survey to practices to ask about their identification of patients with a learning disability and uptake of cancer screening and health checks.

In 2018 a questionnaire was completed by 16 GP practices in Vale of York CCG.  The responses were representative of 80% of the patient population. There were differences between GP practices and it was identified that update of cancer screening  and health checks was low.

Cancer screening


Number eligible

Number screened

Percentage uptake (LD)

CCG overall % uptake

Cervical screening 25-49





Breast screening





Bowel screening





Health check uptake

Click here to view the data for health check uptake.

This data and the feedback from our population were used to put a case forward for:

  • Improved communication to patients with a learning disability
  • Employment of a specialist LD team in primary care (within GP practices)

In April 2018 the Quality Lead for Primary Care attended a Healthwatch Assembly to discuss the project, and gather feedback.

Resulting in:

Review of leaflets available to patients:

We reviewed the literature and resources that was available for patients with a learning disability. We updated the GP website, where clinicians go to download information and leaflets for patients, with the latest version of easyread documents.

GP website: https://www.valeofyorkccg.nhs.uk/rss/index.php?id=learning-disabilities

Increasing funding to employ Learning Disability Nurses

Within the central locality, we supported the GP practices across York to introduce two Learning Disabilities nurses and a care navigator in early 2019 to help with:

  • Increasing the number of health checks
  • Improving communication and the accessibility of information to those with a learning disability
  • Training staff within practices
  • Identification of patients with a learning disability

Progress so far:

  • In early 2019 one nurse has been recruited, and the second post is being advertised.
  • On 7 March there will be a clinician training event for all practices and there will be a carer event in conjunction with the LD forum in the summer.
  • A new template has been created for the annual healthcheck, including an easy read invite.
  • The team of nurses will also be advising practices on clinical coding, so that they are not missing patients with a learning disability.
  • This was reported at the Primary Care Commissioning Committee on 1 March 2019. To view the report please click her eand go to pages 19-21.


How we have fed back to our partners and population: