Patient perspectives from The Brain Tumour Charity

Kate Kershaw, head of support and information at The Brain Tumour Charity, talks to pharmaphorum about what patients need as it launches its latest initiative – an online resource featuring a series of animations to help children with brain tumours, their families and health professionals.

Tell us about your charity, what are your long-term goals?

The Brain Tumour Charity is at the forefront of the fight to defeat brain tumours. We fund pioneering research to increase survival rates and improve treatment options. We raise awareness of symptoms, to aid earlier diagnosis and so that the needs of people affected by brain tumours are understood and can be met. We provide support for anyone affected so that they can live as full and high quality a life as possible.

We are committed to having the biggest possible impact for every person affected by a brain tumour, including defending the most amazing part of the human body, so that getting a diagnosis no longer means a death sentence.

We are the only national charity fighting brain tumours on all fronts to save lives and reduce long term disabilities.

Our vision is for a world where brain tumours are defeated. Our mission is to fight brain tumours through:

• Funding pioneering research to find new treatments, improve understanding, increase survival rates and bring us closer to a cure

• Raising awareness of the symptoms and impact of brain tumours to reduce diagnosis times and so that the needs of people affected can be addressed

• Providing support and information for anyone affected to improve quality of life.

We are members of the Association of Medical Research Charities, The Information Standard, The Helplines Partnership and the Fundraising Standards Board.

The Brain Tumour Charity is investing in research into new treatments for brain tumours. What are the greatest challenges in this field?

We know that, across all disease areas, funding research makes a crucial difference to improving treatments. A legacy of underfunding is a barrier in new and novel treatments being developed for people being diagnosed with brain tumours today. The Brain Tumour Charity is tackling this challenge directly.

In 2013 we led a programme of £13 million investment into brain tumour research over the next five years. We did this through a mix of raising our own funds, match funding and working in partnerships with other charities. This investment represented a significant step-change for research into this underfunded disease.

“Given that there are over 120 different brain tumour types … understanding the biology of tumour growth remains a key challenge”

Given that there are over 120 different brain tumour types and many tumours are heterogeneous in nature, understanding the biology of tumour growth remains a key challenge. It is also critical that developments in our biological understanding of tumour types, and often sub-types, are translated through to give more targeted treatments to individuals based on the genetic makeup of their tumour. Furthermore, we need to test the potential of both novel and repurposed agents for their effectiveness against brain tumours, as many tumours are resistant to standard conventional therapies.

The Brain Tumour Charity also provides support, advice and information to people with brain tumours and their families. What are the areas of greatest demand in this area?

Information itself is the biggest need for people affected by brain tumours, with the 2013 National Cancer Patient Experience Survey finding that only 54 per cent of brain cancer patients were given written information about their operation (worst performing cancer type) and only 71 per cent understood the explanation of their test results (worst performing cancer type).

We address this through a number of different media to ensure we make our services as accessible as possible. Our Newly Diagnosed Packs have been developed to be given at the point of diagnosis. This printed resource provides patients with the basic information they need when they are first diagnosed and signposts them to our wider Support and Information Services. This resource is provided free of charge to health professionals for them to provide in clinic.

Online we have a range of factsheets for adults and parents. These cover a wider range of topics, ranging from treatments to the cognitive effects of brain tumours, and are free to download.

“Age-specific information is also vital so that health professionals, families and carers of children affected by brain tumours are able to communicate with them in a way they understand”

Age-specific information is also vital so that health professionals, families and carers of children affected by brain tumours are able to communicate with them in a way they understand. We have directly addressed this through the development of the ‘Jake’ series. This series of six cartoons introduces children to the character of Jake, a friendly eight-year-old boy, who tells them all about brain tumours in a way that they will understand.

Peer-to-peer support is vital. Having the opportunity to talk to others affected by brain tumours reduces isolation and helps people understand the journey ahead. We offer support via a range of different media to ensure people can access support in the format they prefer. We have an active private Facebook Group with over 1,300 members from across the world, a network of support groups across the UK and roadshow Information Days featuring talks from leading health professionals and the opportunity to meet others affected.

What can the NHS do to improve diagnosis, treatment and care for people with brain tumours?

Over the last three years The Brain Tumour Charity has raised awareness of early diagnosis for children with brain tumours through the HeadSmart campaign. This highly successful campaign has targeted families, health professionals and schools to make people ‘brain tumour aware’ and raise awareness of the symptoms. Since the launch of this campaign we have seen diagnosis times reduce from 12-13 weeks to 6.7 weeks. For the UK to be in line with the best diagnosis times in the world this needs to be under five weeks and we are committed to continuing to drive this campaign and save lives.

The most recent National Cancer Experience Survey (2014) also highlighted that brain tumour patients report the worst experience of all cancer patients for: receiving a complete explanation of their test results, their family being given the opportunity to talk to a doctor, feeling supported by GP practice staff, receiving coordinated care and being treated like a set of cancer symptoms.

This survey also highlights that those affected by brain tumours are among cancer patients with the worst experiences (bottom four cancer types) for a further 14 questions (around diagnosis, information giving, conflicting information, support and written information about surgery).

The UK NHS can directly change the experience of people with brain tumours by improving the level of information provided at the point of diagnosis. We are working with the NHS to address this by disseminating the aforementioned Newly Diagnosed Packs free to all neuro-oncology centres and patients directly and by providing children affected by brain tumours with a ‘Brainy Bag’.

The ‘Jake’ animations are The Brain Tumour Charity’s direct response to the need for age-appropriate information provided in a medium understood by children today. Jake is a friendly animated eight-year-old boy who explains his brain tumour treatment to other children in an open, honest, yet gentle, way. These animations are designed as a tool for parents and health professionals and have been supported by the Royal College of Paediatrics and Child Health.

What can other stakeholders, such as the pharmaceutical industry, do to help?

More funding for research is needed due to the legacy of underfunding of research in to brain tumours which accounts for the sustained poor survival rates over the past three decades.

The pharmaceutical industry can also help by working collaboratively with academia and the third sector to enable novel and repurposed agents to be tested for their effectiveness against brain tumours.

What is the focus of your latest awareness/fundraising campaigns?

We are delighted to be launching ‘Jake’, our animated character, to help children understand brain tumours, on 2 October at Birmingham Children’s Hospital. The animations, supported by BBC Children in Need and The Royal College of Paediatrics and Child Health, aim to help children understand and reduce fear through a medium that is easy to understand and designed specifically for them. The topics addressed through Jake are: About brain tumours, Scans, Steroids, Chemotherapy, Radiotherapy and Neurosurgery.

Our HeadSmart campaign is an ongoing campaign aimed at reducing the diagnosis time of children with brain tumours to under five weeks.

Our latest fundraising events are our flagship ‘Twilight Walks’. Three walks, taking place in September and October, are bringing together almost 1,000 walkers from the brain tumour community in a 10K early evening walk to fundraise and make new friends.

The case of Ashya King has put the issue of treatment of childhood brain tumours firmly in the spotlight. What are the Brain Tumour Charity’s thoughts on the case? Have all the issues been well represented in the media and, if not, what has been missed?

Whatever the facts of the situation facing Ashya King’s family, The Brain Tumour Charity knows, from its experience of working with families over many years, that separating a desperately ill child from his or her family has significant emotional and psychological consequences. It has a profound impact not only on the child, but on brothers and sisters, the parents and wider family.

Forced separation will cause additional trauma for the family, which is already facing devastation from the diagnosis of the brain tumour, their young child undergoing major surgery and the possibility of gruelling treatments to come. For a five-year-old boy to be isolated from his parents in an unfamiliar hospital, in a country where he does not speak the language, appears fundamentally and morally unacceptable in these circumstances.

About the interviewee:

Kate Kershaw is head of support and information at the Brain Tumour Charity. She has worked in the not-for-profit sector for 10 years, nine of which have been spent working for charities. Kate’s previous roles have included managerial roles at The Stroke Association and Victim Support, with her experience ranging from working with people with aphasia, to designing services for victims of domestic and sexual violence. Since joining The Brain Tumour Charity Kate has steered the support and information department towards a greater online presence, including initiatives like the ‘Jake’ animations, which will be available to all online free of charge.

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