Brain Tumour Action

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The Herald Calendar Helps Raise over £9000 for Brain Tumour Action.

Thank you so much for the tremendous support for our charity received through the sales of The Herald Calendar. We really enjoyed meeting Caleb and his family in Glasgow and sharing in the photo shoot.

Caleb with The Herald Cheque. Photograph by Martin Sheilds.

Caleb and Stephanie Duffy with Tim Blott, Managing Director of The Herald, and Staff from Brain Tumour Action.

Sales of The Herald’s 2012 calendar, which showcases the best of Herald readers’ photographs, raised more than £9000 for Brain Tumour Action.

Cate Devine reports in “The Herald”:

The final sum of £9025.80 has now been handed over to Brain Tumour Action, which will help fund research into how low-grade brain tumours develop in children.

Brain cancer kills more children and young adults than any other form of cancer, though as yet there is no child-specific research ongoing in Scotland.

Brain Tumour Action, the only brain tumour charity registered in Scotland and the oldest in the UK, was chosen by The Herald for its fundraising campaign following its story last November about the plight of eight-year-old Caleb Duffy, of Shotts, North Lanarkshire, who has a rare form of tumour called a craniopharyngioma close to his pituitary gland, at the centre of his brain.

He was diagnosed following a visit to the local optician, as he was having severe headaches and his parents thought he might need glasses. Doctors at the Southern General Hospital in Glasgow were able to remove 75% of the tumour but he needed radiotherapy to shrink the remaining part.

The NHS in Scotland can only offer Photon therapy for this, which is risky because it can affect the developing part of the brain. Proton therapy, which is more precise but much more expensive, is only available in the US.

Caleb was lucky enough to be offered treatment at the Proton Therapy Institute in Jacksonville, Florida, under a special scheme operated by the NHS. His condition is now being monitored at Yorkhill Hospital.

His mother Stephanie told The Herald: “We are delighted with the money raised for further research into child brain tumours, and it’s good that we could be involved in some small way. Hopefully we have also helped raise awareness of how many children are affected by brain tumours. We are glad this money will go towards helping other children like Caleb, and we would like to see a Proton therapy unit in Scotland.

“Our family’s experience has made us realise you can’t look too far ahead. We are taking things one day at a time. We have met the most wonderful people along the way, and encountered the greatest kindnesses.”

His father Sean said: “Thanks to Brain Tumour Action there is a wealth of online information about brain tumours, but there is no research fundraising here in Scotland that I’m aware of. Brain Tumour Action have Scotland at heart and have set up a network of support groups across the country, but it’s a shame there’s no child-specific research ongoing here.”

Lynne Barty, secretary of Brain Tumour Action Scotland, said: “We are absolutely thrilled with the success of The Herald calendar. This is a major contribution from a single fundraising campaign.

“We are already supporting a highly significant research project in London into low-grade paedriatric brain tumours and the money raised by Herald readers will go into that, unless we can find a specific project for craniopharyngioma.

“We would love to see further research into paedriatric brain tumours in Scotland. However, one year of research can cost up to £60,000, which means it’s a very expensive business.”

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

‘Wear a Hat

for Brain Tumours’ Day!

Friday March 30th, 2012

Wear A Hat Day Poster

You may “Save Image as..” and then open and print your copy.

1. Choose someone as your Wear a Hat for Brain Tumours team leader to rally support. Call us on 0131 466 3116 or email for posters, leaflets, sponsorship forms, etc. to:

administrator@braintumouraction.org.uk

Tell us how we can best help you with your plans.

2. Decide what time your event will happen, get approval if necessary and start advertising. Send out invitations and spread the word about brain tumours to everyone you know, asking people to wear a hat and donate a pound or two.

3. Most important: have fun on the day – perhaps you could have a small prize for the silliest hat.

4. Count the money and send it as a cheque made payable to Brain Tumour Action at: Brain Tumour Action, 25 Ann Street, Edinburgh EH4 1PL.

5. If you have any great photos of the day and you’re happy for us to share them on our website, please send them too.

Good Luck and Thank You for Making a Difference!

PLEASE HELP SUPPORT & FUND BRAIN TUMOUR RESEARCH ACROSS THE UK

A Message from Our Partners

On the 30^th of March 2012 Brain Tumour Research and its member charities will be encouraging nurseries, schools, colleges, universities, public sector bodies and office workers to make a donation in aid of the charity’s annual ‘Wear a Hat Day’. The campaign aims to raise awareness regarding the prevalence of brain tumours and the need for vital research.

From sponsored silences to charity runs and office bake-offs, organisations and people around the country are being encouraged to raise money in any which way they see fit. You could even nominate your boss to wear a hat for the day in return for a donation!

Brain Tumour Research receives less than 1% of national cancer research spending in the UK yet this deadly disease kills more children and people under the age of 40 than any other cancer.

Our annual Wear A Hat Day has been designed to capture your imagination and enable you and your friends, colleagues and contacts to have fun. By getting involved you will be raising vital funds for brain tumour research. More importantly you will be providing the hope of finding a cure for this most devastating of diseases. To help your day be a success we have put together some great materials which you can find online and download from our website: www.braintumourresearch.org/wear-a-hat-day and www.braintumourresearch.org/fundraising-pack

• ­Posters, A-Z of Hats, Hat Quiz , Template Invites and Template Press Releases.
• ­Order from karen@braintumourresearch.org our Wear A Hat Day character badges and balloons
• ­­Instructions and patterns to make our bespoke hats, created by Kate Langrish, crowned ‘2010 Hat Maker of the Year’
• ­Instructions to make a colourful paper hat – Great team building exercise and provides an enjoyable interactive element for pupils and students.
• ­­Watch our accompanying videos to make our bespoke hats and paper hats www.youtube.com/braintumourresearch
• ­Treat yourself to an exclusively designed brooch based on a hat designed by celebrity milliner Philip Treacy – order from karen@braintumourresearch.org

Raise Awareness and Have Fun!

Neurological Alliance Courses

The Neurological Alliance of Scotland runs courses to prepare adults with different neurological conditions AND carers to get involved in planning and improving their local health services. They will be running ‘Taster’ sessions in NHS Dumfries & Galloway:

Stranraer: Wednesday 29^th Feb, 1.30-3.30pm, Library,

Dumfries: Thursday 1^st March, 10.30-12.30pm, Aston Hotel,

Lockerbie: Thursday 1^st March, 2.00-4.00pm, Somerton Hotel

and Neurological Voices Training in NHS Ayrshire & Arran (full course, 3 half-days)

Thursdays 15^th, 22^nd, 29^th March, 10.30am-1.30pm, Dumfries.

See Neurological Voices for further details.

Training in Ayrshire & Arran, Forth Valley and Tayside has been well received and a neurological Voice, Gill Bedwell, will speak about the project at the upcoming Brain Awareness event in the Scottish Parliament on 14^th March. Hope to see many of you there.

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

What we did last year with Your Help

Brain Tumour Action has been able, thanks to your generous support, to make two significant donations during 2011.

The first is a donation to the Edinburgh Centre for Neuro-Oncology which has launched an Appeal to raise funds for the purchase of an intra-operative ultrasound system to assist in brain surgery.

We have also provided funds to support research at the University of Portsmouth in liaison with Brain Tumour Research.

As well as backing research at hospitals within the UK we continue with the main work of our charity: supporting individuals through our telephone Helpline, now in its ninth year of continuous service, through email correspondence, distributing our range of ten information pamphlets including the well-known’ Living with a Brain Tumour’ and contributing to awareness-raising across the country in partnership with many other brain tumour charities. We also host the longest, continuously-running support group in the UK, provide set-up grants to newly-established support groups and fund aromatherapy for patients in Scotland.

Brain Tumour Action, unlike many other charities, is a voluntary organisation without paid employees.

With your continuing support we can do even more to help those affected by this debilitating disease.

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

  16th May 2012

  Winter 2011 KITE