Treat me well

22 July 2021

Closing health equality gaps for people with a learning disability must start in childhood, says Paul Donnelly, head of campaigns at learning disability charity Mencap.

People with a learning disability face severe health inequalities throughout their life – which can begin even before birth – and are more likely to die avoidably and die younger (University of Bristol, 2020). So why isn’t their health taken more seriously? During Covid-19, many of these health inequalities have become even worse. A recent Mencap report highlighted how the barriers people with a learning disability face to accessing healthcare services have been exacerbated by the pandemic (Mencap, 2020a). Having access to the right specialist support and health information is fundamental to achieving the best outcomes, yet too often this doesn’t happen. The health and wellbeing of people with a learning disability, and closing health inequalities, must start in childhood at the point of diagnosis.

Mencap’s Children’s Campaign

In December 2020, we launched Mencap’s Children’s Campaign to create better health outcomes for children with a learning disability, from the point of diagnosis and beyond. It is part of our long-running Treat Me Well campaign, which aims to transform healthcare for people with a learning disability (Mencap, 2020b).

The Children’s Campaign began with a focus on children aged 0 to five and called for better support for families through a new disability coordinator role (see below), as well as the launch of resources to support both healthcare professionals and families (Mencap, 2020b). This July, we’re launching the next stage of our campaign, which aims to support children later on in their life as they transition to using adult health services.

34% think children with a learning disability do not receive equal hospital care compared with those without one

For the first part of the campaign, we surveyed 116 families from Northern Ireland, England and Wales in September and October 2020. We did this to find out more about how children with a learning disability aged 0 to five and their families are treated in hospital, and what could be done to make their experiences better (Mencap, 2020b).

Parents can often find out their child has a learning disability at a hospital appointment – whether a prenatal diagnosis or shortly after birth. Hospital staff have a vital role to play in providing information and advice, not only about health services, but also in signposting to other support available, such as support for early years development and access to social services. However, families are often left to discover and navigate a complex maze of services on their own, at a time when they need support the most, leaving a vital period when needs are unmet and may escalate.

Results from the survey showed that only 31% of parents or carers said they received the right type and amount of information from the hospital care team in the weeks and months following their child being diagnosed with a learning disability (Mencap, 2020b). Further results showed that 45% had experienced negativity, prejudice or discrimination from healthcare professionals, either deliberately or non-deliberately, and 34% think children with a learning disability do not receive equal hospital care compared with children without one (Mencap, 2020b).

The disability coordinator

Parents need coordinated care and support that is suitable for their family. Mencap is campaigning for hospital trusts to create a new disability coordinator role to ensure there is a link between the hospital and support available from community-based services and groups. This role would support and signpost families to get the help they need, from pregnancy and throughout childhood.

Furthermore, Mencap, along with Bradford Talking Media, Bradford People First and Airedale NHS Foundation Trust, created resources for both parents and healthcare professionals to help children with a learning disability (aged 0 to five) get the support they need in hospital.

Those resources for parents provide information and guidance to inform families about the support and services available from healthcare professionals. For healthcare professionals, the resources focus on the crucial role they play when a family receives a diagnosis. Concentrating on the importance of communication and what support should be available, it aims to inform and convey the key knowledge healthcare professionals need to provide the best possible care. While hospitals may be where families will get the diagnosis, community practitioners, such as health visitors, can help to signpost families and make them aware of the resources available. They can also ensure that where healthcare is extended into the community setting, the families still feel engaged in the health of their child and are supported. For some children, they will be in and out of hospital, and here the role of the community learning disability nurse is vital.

Empowering families

Our next stage of the Children’s Campaign – which launched in July – is focusing on those who are aged between 16- and 18-years-old who are transitioning to adult health services. Moving from children to adult services can be daunting, and Mencap has launched materials for young people to help them understand the changes they may face and to help empower them and their families to ask for the support they need. It is crucial to support young people at this key stage in their life when the health services they use start to change.

The resource provides information on the changes young adults will face, explaining for example, how they may need to go to different hospital departments. It also aims to make sure people know their rights, like asking for reasonable adjustments, which can be small things that make the world of difference, such as having someone with you for support, or asking for a longer appointment.

At this point, young people can also speak with the transitions team or with a learning disability nurse at the hospital. They can help make sure hospital staff are aware of any adjustments that may be needed. Outside the hospital setting, community healthcare practitioners can help inform young people about the resources available.

Simple changes in hospital care can have a big effect – better communication, more time and clearer information can be crucial for people with a learning disability. No one should have to face issues accessing the healthcare they need because they have a learning disability.

Paul Donnelly is head of campaigns at Mencap.

Are there any specific areas of support or training that would make you feel more confident giving support to families of children or young people with a learning disability? Join the conversation on Twitter @mencap_charity and @commprac using the hashtag #TreatMeWell


Mencap’s learning disability helpline for families: 0808 808 1111 (10am to 3pm, Monday to Friday) or email [email protected]

Mencap resources for supporting families through a learning disability diagnosis bit.ly/Mencap_diagnosis_support

Mencap’s Children’s Campaign report bit.ly/Mencap_report

The resources for young people of transition age are available at bit.ly/Mencap_transition_resources

IPSEA, the right to mainstream education for SEND children bit.ly/IPSEA_SEND

SEND: a guide for health professionals bit.ly/GovUK_SEND_guidance


University of Bristol. (2020) The Learning Disability Mortality Review (LeDeR) Programme annual report 2019. See: bristol.ac.uk/media-library/sites/sps/leder/LeDeR_2019_annual_report_FINAL2.pdf (accessed 8 June 2021).

Mencap. (2020a) My health, my life: barriers to healthcare for people with a learning disability during the pandemic. See: mencap.org.uk/sites/default/files/2020-12/MyHealthMyLife_COVID%20report.pdf (accessed 8 June 2021).(Mencap, 2020b). Children’s Campaign (early years) report. See: mencap.org.uk/get-involved/campaign-mencap/treat-me-well/treat-me-well-children (accessed 8 June 2021).

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