Midland Mencap are working in partnership with Macmillan Cancer Support on a new research project which considers the experiences of people with learning disabilities who have received a cancer diagnosis.
The project, which is funded by Macmillan, will focus on the personalised care and support services currently available in order to discover what is working well and what isn’t, from a patient perspective. With this information, the charities hope to identify opportunities to improve services.
The researchers are hoping to speak to anybody with a learning disability who has experienced a diagnosis of cancer, as well as their family carers who support them.
The project hopes to capture real life experiences of the cancer pathway
Once the engagement work has been completed, the findings will be collated in a report detailing the key insights and recommendations for Macmillan.
Macmillan hope the findings will capture real life experiences of the cancer pathway and how it currently supports individuals with learning disabilities.
Macmillan will then use the findings to offer people with learning disabilities personalised care and support in the most appropriate way.
Hannah Sanderson, Macmillan Engagement Lead, 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.”
Support will be offered throughout
Dave Pickard from Midland Mencap said the researchers are eager 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,” he added.
The charities acknowledge that this is a sensitive subject and emphasise that any information that is disclosed will be treated in the strictest of confidence.
To get involved with the project, email Families@midlandmencap.org.uk or call 0121 442 2944 and ask for the Family Carers Team.