Charity Spotlight on Brain Tumour Support

• Approximately 45 people each day in the UK face a brain tumour diagnosis.
• Over 100,000 people in the UK are living with a brain tumour.
• There are more than 120 different types of brain tumours, making them notoriously difficult to diagnose.
• The cause of brain tumours is not known; they can affect everyone regardless of age, sex, lifestyle, or general health.
• Brain tumours kill more children and adults under the age of 40 than any other type of cancer.
• The five-year survival rate for people with brain tumours is just 12%, compared to 40%for leukaemia and 70% for prostate and breast cancer.
• Incidences of, and deaths from, brain tumours are increasing.

Tina Mitchell-Skinner started Brain Tumour Support in Thornbury, Bristol, following her family’s devastating experience with a brain tumour diagnosis. Tina’s heart-rending story led to the pioneering support work initially delivered by Hammer Out for ten years, before evolving into Brain Tumour Support. Emma McKeown has recently taken the helm of this inspirational charity as CEO having been involved with the charity since 2014 when her brother in law was tragically diagnosed with a glioblastoma grade 4 at the age of 41.

Brain Tumour Support offers unique help not available from the NHS or other charities. They support people with any type or grade of brain tumour, primary or secondary, from glioblastomas to meningiomas and acoustic neuromas, along with their families and loved ones.

Their services are free and include:

• One-to-one support
• Telephone support
• Support sessions and groups
• Support forums on Facebook
• Social and support events
• Online information
• Specialist welfare and benefits advice
• Counselling (available to anyone affected by a brain tumour diagnosis)
• End-of-life support and bereavement support

These services are available throughout the country.

Suzanne, who was diagnosed with a brain tumour at age 21 said, “I had so many questions and no-one to talk to about them.” She finds the Brain Tumour Support Forum on Facebook invaluable, “It’s been great being able to talk to people about practical things and about the realities of surgery.”

Brain Tumour Support really understand the financial implications of having a brain tumour and the importance of providing help to people with financial matters, so much so, they have a dedicated Welfare Benefits Support Professional on hand to help. The unique financial and benefits support is now more important than ever with the current cost of living crisis.

A recent report has estimated that people with neurological conditions such as brain tumours face extra expenses of £200 per week due to issues such as higher energy bills and increased transport costs to get to and from medical appointments. In addition, brain tumour patients are often unable to continue to work during treatment, meaning their income is disrupted which can have negative effects on long-term financial stability.

Some patients are unable to ever return to their job or continue with their careers. The income of family members may also be impacted as many loved ones reduce or give up work to provide care. This care may be required indefinitely, as brain tumour patients can find themselves facing permanent disability after treatment is finished.

Many brain tumour patients struggle with symptoms such as fatigue and poor memory or concentration, making the application forms for benefits such as Personal Independence Payment and Universal Credit overwhelming and inaccessible. As such, support in this area is invaluable. Vicki Size-Baillie, the dedicated Welfare Benefits Support Professional, can help to determine whether someone is receiving all of the financial support they are entitled to and will provide support through the entire application process. She will assist in navigating the benefits system, including help with the completion of forms right through to representation at tribunal hearings if necessary, providing tailored, personalised support.

In 2022-23, Brain Tumour Support’s welfare benefits service unlocked £77,999 in benefit payments for people who might not have received the help they were entitled to.

Neil, diagnosed with a brain tumour, had originally applied for PIP in 2022 but was awarded zero points. Vicki helped him prepare for the appeal process and represented him at the tribunal hearing. As a result, Neil was awarded the enhanced rate for both components and received over £10,000 in backdated payments. He said, “I just wouldn’t be able to do it without this support. I’ll be forever grateful.”

In 2023, Teresa had her Personal Independence Payment award removed following a renewal application. She had been receiving the standard award for the daily living component and the enhanced rate for mobility for several years. Without this financial support and the subsequent removal of her Motability car, she became housebound. After failing a mandatory reconsideration, she was referred to Vicki, who submitted an appeal with a detailed report. The DWP reversed their decision without a hearing, reinstating Teresa’s PIP and awarding the enhanced rate for both components.

At RWK Goodman, we have been proud to sponsor Vicki’s role over the last few years and have been hugely impressed with what she and her predecessor, Steve, have done for those people who have found themselves in instantly difficult and vulnerable circumstances in a bureaucratic and unwieldy system.

From April 1, 2023, to September 30, 2023, Brain Tumour Support launched a six-month ‘early intervention’ pilot project with the neuro-oncology team at Southmead Hospital in Bristol. The project ensured all patients were automatically referred to Brain Tumour Support at diagnosis for immediate emotional and practical support.

The pilot was hugely successful, with 112 people accepting support. In a survey, 93% had not heard of Brain Tumour Support before, and 93% found it useful to be referred soon after diagnosis. Both Brain Tumour Support and the Neuro team at Southmead Hospital were delighted with the outcomes. Mr. Neil Barua, Consultant Neurosurgeon, commented,

“Brain Tumour Support’s guiding principle is that no one – patient or relative – should feel alone when dealing with the effects of a brain tumour. As a brain tumour surgeon, it is a huge privilege to look after patients with this diagnosis, but I am very aware that patients may not confide all of their fears and concerns in me – this is where the Charity’s role becomes so invaluable as Brain Tumour Support’s team is there to answer any question, however big or small.”