By Matthew McKenzie – Chair of ethnic MH Carer forum / Chair of Cancer Carergiver group

I was recently sent information about an important cancer care project being led by Learning Disability England in partnership with the Race Equality Foundation which is funded by Macmillan Cancer Support.

The project aims to improve cancer care for people with learning disabilities from Black, Asian and minoritised ethnic communities. A working group is being established involving self-advocates, family members and friends who have experience of cancer.

As someone who regularly raises awareness of the experiences of cancer caregivers, I believe this is an important opportunity to ensure that people with lived experience help shape what better and more inclusive cancer care should look like.

About the project

People with learning disabilities can face considerable barriers when trying to access cancer screening, understand health information, communicate their symptoms or navigate treatment.

When race, culture, language and discrimination are added to the picture, those barriers can become even more complicated.

Family members and unpaid carers may play a vital role by:

• Helping the person communicate their needs and preferences.
• Supporting them to attend screening and hospital appointments.
• Explaining information in an accessible and reassuring way.
• Recognising changes in the person’s health or behaviour.
• Advocating for reasonable adjustments.
• Supporting the person before, during and after cancer treatment.

However, carers’ knowledge is not always recognised by healthcare professionals. Families may also have to navigate difficult conversations about consent, confidentiality, treatment choices and culturally appropriate support.

This is why the involvement of self-advocates and families must not be treated as an afterthought. Their experiences can help identify where cancer services work well, where people are being excluded and what needs to change.

Who can become involved?

Learning Disability England would like to hear from people from Black, Asian and minoritised ethnic communities who:

• Have a learning disability and have experienced cancer.
• Have attended cancer screening.
• Have a family member who has experienced cancer.
• Support a loved one with a learning disability who has experienced cancer.

The project is therefore open to different forms of cancer experience. Someone does not necessarily need to have received a cancer diagnosis themselves to have something valuable to contribute.

The working group will meet once a month, with most meetings taking place online. Participants will also be paid for their time.

Members of the group will help develop training and resources explaining what good cancer care should look like for people with learning disabilities from Black, Asian and minoritised ethnic backgrounds.

The importance of lived experience

Health services and organisations often develop resources for people without sufficiently involving the people who will actually use them.

Lived-experience involvement can help ensure that information is accessible, culturally responsive and based on the realities faced by patients and families.

It is also important that the voices of family carers are included alongside those of self-advocates. Carers may have witnessed difficulties in accessing screening, delays in diagnosis, poor communication or a failure to provide reasonable adjustments. They may also be able to highlight examples of compassionate and inclusive care that other services could learn from.

People with learning disabilities must remain at the centre of decisions about their own health and care. Proper involvement of family carers should strengthen the person’s voice rather than replace it.

How to express an interest

If you would like to learn more or are interested in joining the working group, please contact Annabelle Ferrari-Wood, the project coordinator:

Telephone: 07383 488 862
Email: annabelle.ferrari-wood@LDEngland.org.uk

You can also visit the Learning Disability England website.

Please consider sharing this opportunity with learning disability groups, cancer support organisations, carer centres, ethnic minority community groups and families who may have relevant experience.

Better cancer care cannot be designed without listening to the people most affected by it. This project provides an opportunity for self-advocates and family carers to help influence training and resources that could improve the experiences of many others.