The funding, which is over three years, will pay for two Brain Tumour Support Workers and will enable the charity to set up its first dedicated support group in Wales.
“We welcome this funding from Macmillan because we know there is a high demand for our bespoke services in Wales,” said Rosemary Wormington, Head of Support at Brain Tumour Support. “We already support many patients and families in the area and we receive new enquiries every month. By employing two dedicated Support Workers in the area, we will be able to offer one-to-one and group support to these patients and many more.”
Currently, dedicated support services which have been designed to meet the very specific and complex needs of people affected by brain tumours are not always readily available.
Many brain tumour patients can struggle to take in and remember information due to cognitive issues, so ongoing and regular communication is vital.
In addition, many brain tumour patients also have to surrender their driving licences, making it difficult for those living in remote areas to reach more established cancer centres.
The need to improve care for people with brain tumours was also identified in the Wales Cancer Patient Experience Survey (CPES), conducted by Macmillan Wales and the Welsh Government in 2016.
Offering a detailed snapshot of the views of cancer patients in Wales, the survey revealed that patients with brain or central nervous system tumours often reported a less positive experience of their cancer care compared to people with other forms of cancer.
Most notably, brain cancer patients reported problems in being assigned, or in being able to contact their Key Worker – the person responsible for helping them to navigate the complexities of their cancer care.
The survey also identified how brain tumour patients often felt they were not given enough care and support from their GP following discharge from hospital.
It is now hoped the new funding will help acute, primary and community care professionals to identify and more fully support brain tumour patients and their families both during and following their cancer treatment.
Richard Pugh, Head of Services for Macmillan in Wales, said: “At Macmillan we want everyone to receive the individual and personalised care they deserve. For many people, this means dealing with worries and concerns that are often far wider than their immediate clinical treatment.
“The funding we are providing to Brain Tumour Support means we will be able to fill a clearly identified gap in cancer care, and support brain tumour patients with their much broader and often far more complex emotional, physical and financial needs.
“Brain Tumour Support are experts in their field. The charity has already supported thousands of people, and we look forward to working with Brain Tumour Support and our wider NHS partners, to make sure this important specialist support service can be made available to brain tumour patients and their families in Wales.”
If you would like us to keep you up-to-date with progress on our first Support Group in Wales, please email firstname.lastname@example.org and let our Support Team know of your interest.