Macmillan Cancer Support and Midland Mencap launch project to understand the experiences of people with learning disabilities and cancer

Macmillan Cancer Support is working with local charity Midland Mencap to conduct an innovative piece of work into the experiences of people living with learning disabilities and cancer.

The collaborative project, undertaken by Midland Mencap and funded by Macmillan, will involve engaging with people with learning disabilities with cancer diagnoses and their family members and carers, in order to better understand their experiences of personalised care and support, what is working well and what isn’t from a patient perspective, and identify opportunities to improve services.

The project is currently in its early stages and is expected to conclude in Spring 2022. Following the engagement work, the findings will then be collated in a report, which will detail the key insights and learning and recommendations for Macmillan to consider the most appropriate ways of supporting people who have a learning disability to access personalised care from the moment they’re diagnosed.

Macmillan Engagement Lead, Hannah Sanderson, said: “This project will give us an invaluable insight into the experiences of people with learning disabilities and cancer, and ultimately help us achieve better experiences for them, and help us improve the personalised care and support we offer.

“Personalised care means people are able to choose the best treatment for them and have more control over their care. It is based on what matters most to people and can have a significant positive impact on their experience and quality of life.

“Midland Mencap is a fantastic charity which works and campaigns for accessible and inclusive services and a better quality of life for everyone with experience of learning disabilities and additional needs, and so it’s fantastic to be working with them and have their expertise onboard.”

Dave Pickard from Midland Mencap said: “We are really happy to be given the opportunity to explore with individuals with learning disabilities and their families and carers their experiences around their cancer journey.

“We are currently seeking participants to speak with as part of the research and are really keen to hear from people with a learning disability and cancer diagnosis, as well as their families and carers, to gather views and stories and use these experiences to inform any necessary improvements. If you would be willing to participate in the project, please get in touch for more information. Support will be offered throughout the project with a large wellbeing event at the end to bring everybody together to discuss our findings.”

For more information on the project and to find out how to participate, please contact/visit:

Phone: 0121 442 2944 and ask for the Family Carers Team

Email: Families@midlandmencap.org.uk

Social Media: Twitter, Facebook, LinkedIn

For comprehensive cancer information and support, including Macmillan’s latest guidance on the impact of coronavirus on cancer care, visit www.macmillan.org.uk. The Macmillan Support Line is open 7 days a week 8am to 8pm 0808 808 0000.

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For further information, please contact:

Amber Roberts, External Communications Officer for West Midlands, on ARoberts@macmillan.org.uk

About Macmillan Cancer Support

At Macmillan, we give people with cancer everything we’ve got. If you’re diagnosed, your worries are our worries. We will help you live life as fully as you can.

And we don’t stop there. We’re going all out to find ever better ways to help people with cancer,
helping to bring forward the day when everyone gets life-transforming support from day one.

We’ll do whatever it takes. For information, support or just someone to talk to, call 0808 808 00 00 or visit macmillan.org.uk