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 tumour 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 death from, brain tumours are increasing.

The need for support for people with brain tumours, along with their loved ones, is huge. In this issue of Team Around the Client Magazine we want to shine a spotlight on the Bristol based charity, Brain Tumour Support, and the amazing work that they do in Bristol and beyond.

Tina Mitchell Skinner is the charity’s Founder and CEO and started the charity, based in Thornbury, Bristol, as a result of her family’s devastating experience of a brain tumour diagnosis. The story of Tina and her family is heart rending but resulted in the pioneering support work which HammerOut delivered for ten years, before moving forward under the new identity of Brain Tumour Support.

Brain Tumour Support offers unique help not available from the NHS or other charities and supports 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 to access 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 who has been affected by a brain tumour diagnosis), end of life support and bereavement support. These services are available in Bristol and 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 past seven months alone, Brain Tumour Support’s welfare benefits service unlocked £163,000 in benefit payments for people who may otherwise have not received the help to which they

Neil, who was diagnosed with a brain tumour had originally applied for PIP in 2022 but was awarded zero points and required support with the appeal process. Vicki helped him to prepare for this and represented him at the tribunal hearing. As a result, Neil was awarded the enhanced rate for both components, and he will also receive 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 an application for renewal. She had been receiving the standard award for the daily living component and the enhanced rate for mobility for several years so when this was taken away it was very distressing. Without this financial support and the subsequent removal of her Motability car, she became housebound. She applied for mandatory reconsideration of the decision but failed. She was then referred to Vicki, who submitted an appeal to the Tribunal Service with a detailed report about why the DWP decision was wrong. Following this submission, the DWP reversed their decision without a hearing being necessary. Teresa’s PIP was not only re-instated, but she was awarded the enhanced rate for both PIP components.

From 1 April 2023 to 30 September 2023, Brain Tumour Support launched a six month ‘early intervention’ pilot project with the neuro-oncology team at Southmead Hospital in Bristol.

The pilot project meant all patients were automatically referred to Brain Tumour Support at the point of diagnosis so they could receive emotional and practical support from the outset. The pilot has been hugely successful and during the six-month period, 112 people accepted support from the charity.

In a survey of the pilot group, 93% had not heard of Brain Tumour Support before and 93% found it useful to be referred so soon after diagnosis.

Both Brain Tumour Support and the Neuro team at Southmead Hospital were delighted with the outcomes of the pilot. Mr Neil Barua, Consultant Neurosurgeon commented that “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.”

Mr Barua goes on to state that “With the tireless hard work of Brain Tumour Support and North Bristol NHS Trust’s brain tumour nurse specialist team, the project was a huge success. Patients contacted the Charity for emotional support, family guidance, counselling and financial advice. This project helped not only our patients – with 87% telling us that they felt less alone – but also the clinical team with a 50% reduction in calls to the nursing team for emotional support. The results were really astounding and confirm what I have known for many years – that the contribution that Brain Tumour Support can make to patients can never be underestimated.”

Moving forwards, Brain Tumour Support hope to secure annual funding of £50,000 to continue delivering this project and expanding to other areas. They also want to be able to support more people.

Brain Tumour Support have been nominated for a Bristol Life Award in view of all of the fantastic work they are doing here in Bristol and beyond, so watch his space!