Brain Tumour Action

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Welcome to BTA

Advance Notice

Cross Party Group on Cancer Meeting, 12^th. June, 5.30pm. Committee Room 3, The Scottish Parliament.

Next month at Holyrood the Cross Party Group on Cancer will examine the impact that brain tumours have in our society. “Listening to the Fallout” will include presentations by patient and carer representatives sharing their experiences. It is hoped that this will illuminate the ongoing debate about how best to transform care after treatment. Anyone may attend but your names must be submitted beforehand for security purposes. Please let us know if you would like to come along.

Our Ongoing Support for Paediatric Research

Representatives from Brain Tumour Action and the Astro Low Grade Glioma Fund met up in London at the Blizard Institute on March 14th. We were given an extremely warm welcome, not to mention both a delicious lunch and tea. The staff gave presentations about their current findings and then took us on a tour of the laboratories where we were able to view some of the work for ourselves.

Alice McGregor looking at samples of brain tissue

The research team, led by the indefatigable Professor Denise Sheer, is studying the epigenetics of childhood low grade brain tumours. We feel greatly privileged to be able to part-fund this groundbreaking work for a second year.

Denise Sheer introducing us to the study of epigenetics.

If you are reading this then please consider making a donation to Brain Tumour Action so that we can continue our support for their valuable work.

Just think: your generosity now may help to save a child’s life not so far into the future!

Youth and Philanthropy Success!

The Winning Team

Five pupils from The Royal High School of Edinburgh were the runners up in their school’s Youth and Philanthropy Programme this session. They became actively involved with the Edinburgh Support Group, attending meetings and interviewing members. They then gave an outstanding final presentation on brain tumours which demonstrated how they impact the lives of patients, their families and friends. We are hugely appreciative of the commitment and maturity with which they got involved in the work of our Charity. Many congratulations to them all for their efforts.

Taking the Message to Holyrood

Michael Matheson at the BTA stall

Michael Matheson, the Scottish Minister for Public Health, visited our exhibition stand at the Scottish Parliament where we promoted Brain Tumour Awareness Week. See page 3 of our new KITE.

New Booklet Out Now

Our patient support booklet, Radiotherapy for Brain Tumours, has now been fully revised and updated.

Full of useful information it takes the reader through the whole process from planning to completion in clear, comprehensible language.

The New Edition, 2012

It is available on request from Brain Tumour Action and it can also be downloaded from our website. See  Radiotherapy for brain tumours.

We hope you will find it helpful

Jimmy Edgar’s Brain Tumour Action Night

Jimmy Edgar sent us this email along with a photo taken at his recent fundraising disco –it looks great! Thank you so much to him and all his generous friends for their support. Jimmy is a long term survivor whose inspiring story will feature in our winter edition of KITE.

“Just wanted to send you a message to say that my family and friends organized a fund raising 70’s disco as a surprise to me and raised over £1100

for the charity.

Hopefully you will have received a letter with 2 cheques enclosed made out to Brain Tumour Action. The work you’re doing is fantastic, I wish I’d got in touch

years ago. But, never mind, ‘that’s life’.

Wishing you all the very best in all you do.”

Sophie Gunner’s Trek

Sophie Gunner who has completed her Charity Challenge in China raising money for Brain Tumour Action has just sent us this update:

Sophie on the Great Wall of China

“It was just incredible. The trek was hard but I really enjoyed it and could have carried on walking for a few more days. The sun was out for us the whole 5 days trekking, which kept us in high spirits and the group was so friendly we all encouraged each other to go on and kept us trekking when we really didn’t feel like it. We sang some great motivational songs “Climb Every Mountain” the sound of music and everyone was trekking for a tremendous cause. When we finally finished the trek after climbing the heavenly stairway, which was the most difficult part of the trek, the stairs were like climbing a ladder and we were doing it in 33 degrees, but when I finally hit the top I was overcome with emotion that I’d finished, it was amazing. I think everyone should do something like this in their life, even if it’s not trekking something as big as the great wall of China, and hopefully I will have made a difference in your research and care, even all be it just a small one.”

Sophie with other Charity Challenge Fund Raisers

Well done Sophie for raising even more than your target. Brilliant!

Brain Tumour Action is Proud to support…..

Members of the Astro Fund and Brain Tumour Action with research staff at the Blizard Institute, London. Prof. Denise Sheer is third from the right in the front row.

Brain cancer kills more children and young adults than any other form of cancer, but two brain tumour charities, ourselves at Brain Tumour Action and the Astro Fund are working together to change this dreadful statistic. To commemorate Brain Tumour Awareness month 2012, we have collaborated to provide grant funding for 2012-2013 to the team led by Prof. Denise Sheer at the Blizard Institute, Barts and the London Hospital.

This dynamic group is researching genetic abnormalities of pilocytic and other low grade astrocytomas which are crucial to advancing understanding and eventually providing treatment for these common paediatric brain tumours.

Prof. Sheer’s team has been responsible for several major breakthroughs in the past three years including the identification of specific gene fusions in virtually every case of pilocytic astrocytoma. They were awarded the Jeremy Jass Prize for Excellence in Pathology for this work because this discovery has opened avenues for new types of treatment for low grade astrocytomas which are currently being tested in clinical trials in the US.

This year, however, she faced the prospect of her lead researcher, Dr. Jenni Jayapalan, being made redundant due to continuing grant cut-backs. Prof. Sheer said: “We have now completed two new sets of experiments on a large collection of children’s low grade astrocytomas, continuing in our long-standing collaboration with St Jude Children’s Research Hospital in Memphis. We now urgently need to keep Dr. Jeyapalan on so that she can analyse the data from these experiments and determine their significance for low grade astrocytomas in children.”

Such is the parlous state of research funding for brain tumours in the UK that Prof. Sheer has already lost two of her lead researchers in the past three years. Both have found new jobs: one has moved to the USA while the other is continuing with research in the UK but not into brain tumours. “This is such a severe loss of talent to the UK brain tumour community”, she observes.

The Astro Fund has been a major supporter of Prof. Sheer’s earlier work and we at Brain Tumour Action have been able to contribute this year with money received from the World Today Fund which was originally established to provide treatment for a Scottish child with a pilocytic astrocytoma. The residue of this Fund is being donated to research into paediatric brain tumours.

As well as funding research, both Astro Fund and Brain Tumour Action offer on-line support groups for patients, carers, family and friends which are used by people world-wide. Brain Tumour Action provides a range of information leaflets and a telephone helpline.

For Astro Fund please contact: 01485 572767 – info@astrofund.org.uk – www.astrofund.org.uk

Our best-known booklet

Our New Edition

Our best-known booklet, the twenty-four page ‘Living with a Brain Tumour’ has just been updated and reissued. ‘Living with a Brain Tumour’ is the most often requested of our publications and is now in its third edition. Among other topics it discusses the impact of diagnosis, physical and emotional responses, stress, coping strategies, tumour types and symptoms and treatments. Please let us know if you would like a copy. It is also available to read or download from our website. See Living with a Brain Tumour

A Patient Information Navigation Study in Edinburgh

Sarah Scott, Sarah Shepherd and Belinda Hacking of the  Edinburgh Cancer Centre are offering guidance to newly diagnosed patients  on their treatment choices using an information program, supported by a CD, developed by Dr Jeffrey Belkora of the University of California in San Francisco.

The Patient Information Navigation (PIN) program aims first to encourage patients to plan ahead for their consultation and feel confident about asking the questions they want the answers to and second to help patients feel informed and certain about the decisions made regarding their health care. People newly-diagnosed with a brain tumour attending the Edinburgh Centre for Neuro-oncology (ECNO)  will be invited to take part in the study. The PIN program consists of three parts: a list of questions prepared before the clinic appointment(consultation), consultation audio-recording and consultation summarising. Patients meet with a ‘Patient Information Navigator’ (a member of staff trained to deliver PIN) prior to four key doctor appointments at the ECNO clinic– initial appointment, treatment planning appointment, treatment review appointment, and follow up appointment.

The question list is created using the SCOPED model (see box 1).

Box 1. The SCOPED Model

SCOPED encourages patients to think about questions regarding:

Their Situation

Treatment Choices

Personal Objectives

Key People involved in their care

Evaluating risks and benefits of treatment

Deciding which treatment is best/to proceed with the recommended treatment.

Patients will create their list of questions with the navigator. This list will then be given to the patient’s doctor for them to review before the appointment. The navigator will go together with the patient to the appointment and audio-record the consultation while noting down the key points. The patient will take away with them a CD of the consultation on the day and will be sent a typed summary of what was discussed which will be copied to the hospital consultant. This summary can also be sent to the patient’s GP within two working days. This means that the GP is kept up to date with the patient’s hospital care.

This study will be working with those affected by brain tumours after two focus groups were conducted which showed a need for support at consultations. These focus groups highlighted the following concerns:

• asking questions could be frightening and difficult, not knowing what to ask the doctor until after the consultations.
• it was frustrating to have to start from the beginning with each new doctor seen; there is a need for more awareness about brain tumours in general practice.

The navigation program was initially trialled with newly-diagnosed breast and prostate cancer patients from 2009-2010. Patients who took part felt that their doctor was prepared for them personally. They also recognised a change in their own behaviour: “I asked questions that I wouldn’t have thought about, instead of just going in and saying ‘that will be fine’ and not really bothering.” The personalised information that patients received reassured them about their treatment choice: “They gave me lots of percentages and things like that which I felt was a bit much to take in, but on listening to [the CD], it does sound like it’s going to be beneficial.”

Previous results suggest this program enables patients to engage effectively in consultations, resulting in greater satisfaction with the decisions made.

The new study will run from January 2011 to February 2012 in the ECNO clinic and is also being offered to patients newly-diagnosed with colorectal cancer during the same time period.

This study is funded by Macmillan Cancer Support and the Edinburgh Cancer Centre, in collaboration with Coventry University. If you would like more information please do not hesitate to contact the study Evaluator, Sarah Shepherd, on 0131 537 1247 or the Navigator, Sarah Scott, on 0131 537 3742.

The Brain Tumour Manifesto

Brain Tumour Action is a member of Brain Tumour Research, an umbrella organization for eighteen UK brain tumour charities. Brain Tumour Research along with Brain Tumour UK, The International Brain Tumour Alliance and The Samantha Dickson Brain Tumour Trust have launched a manifesto which calls on the Government to work in partnership with the brain tumour charities to:

• Ensure early diagnosis and treatment for everyone affected by a brain tumour;
• Implement the best practice guidance for treating people with the disease;
• Significantly increase Government investment in brain tumour research.

The manifesto sets out practical solutions to be monitored, to measure improvements towards the lives of everyone affected by a brain tumour.

The manifesto was presented to the All Party Parliamentary Group on Brain Tumours in October. The manifesto may be viewed at Manifesto.

• Site Last Updated

  10th May, 2013

• Winter 2012 KITE