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Brain tumour patients can now access a vital new support service in Wales

Brain tumour patients in South East Wales can now access vital specialist help thanks to a new partnership between Macmillan Cancer Support and Brain Tumour Support.

The partnership is based on an injection of £143,000 in funding from Macmillan.

The funding will help Brain Tumour Support, which already successfully runs 24 support groups for brain tumour patients and their families across England, to expand this much-needed service to South East Wales.

Set to run initially for three years, the project will see two Brain Tumour Support Workers being active across the region and the establishment of Wales’ first dedicated brain tumour support group.

The new team, which was formally launched this week to help raise awareness of the new service with health professionals in the region, is making a huge impact and is already supporting many brain tumour patients and their families.

Amongst the first to benefit are Alison and Bill Young who live in Merthyr Tydfil.  They returned from holiday to the news that their son Andrew, aged 39 years, had been diagnosed with an inoperable brain tumour.  "It was a bolt out of the blue and we didn't know where to turn," said Alison.  Andrew is now unable to work and while his employer has been extremely supportive, he has had to put his house, that he built himself, up for sale as he cannot cover the mortgage repayments.

“After being misdiagnosed several times, Andrew is now receiving excellent medical care, but we needed help with all sorts of things,” said Alison.  "That is why we were so relieved when we heard about a new service offered by Brain Tumour Support.  Steve, our Brain Tumour Support Worker, whose support has been invaluable, has made home visits and continues to help us emotionally and practically.  We have also attended the support group meetings and it is marvellous to meet others who understand our situation.”

Rosemary Wormington, Head of Support at Brain Tumour Support, said:

“Brain tumours create highly specific and complex needs.  The funding from Macmillan means we can now create a bespoke service for patients in South East Wales. We are hugely excited to have two dedicated Support Workers on the ground in Wales.  It means brain tumour patients and their loved ones can now access the highly specialised one-to-one and group support that we know they so desperately need.”

Brain tumour patients can face a wide range of physical and emotional impacts as a result of their illness.

They can struggle to take in and remember information due to cognitive issues, so regular communication is vital.

Many brain tumour patients will also have to surrender their driving licences, leaving some people isolated and 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 in 2016.

The survey revealed that patients with brain or central nervous system tumours often reported a less positive experience of their cancer care.

Most notable in the survey findings were the problems experienced by brain tumour patients in being assigned, or in being able to contact their Key Worker – the person responsible for helping them to navigate the complexities of their care.

It is 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 treatment.

Richard Pugh, Head of Services for Macmillan in Wales, said:

“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 complex emotional, physical and financial needs.

“Brain Tumour Support are experts in their field. The charity has already supported thousands of people, and we are hugely excited to be working with them 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.

“It is an investment that is only made possible through the continued generosity and tireless fundraising efforts of our supporters.”