Logbook

Brain tumour support 24/7.Call 01983 292405 oremail hello@brainstrust.org.uk

brainstrust leads theway to give patients

access to their information

brainstrust climbsnew heights

Prem Shah’s trek to Everest Base Camp

ISSUE 5

JULY 20

12

THE MAGAZINE FROMbrainstrust – The Meg Jones brain cancer charity

NOW MORE THAN EVER before brain tumour patients and carers need brainstrust.

The NHS is changing, for better or worse; the jury is out. Either way, it’s confusing. Even more so if you’ve got to navigate your way through the system having been diagnosed with a brain tumour. Let’s not also forget the economic outlook is casting its gloomy shadow across most things.

And on top of this, people’s lives are being turned upside down and inside out with the awful news that they, or someone they love, has been diagnosed with a brain tumour.

If there’s one word to sum up how everyone we talk to feels, patients, carers and healthcare professionals, it’s ‘uncertain’. Or downright ‘scared’.

Over the coming year, we’re sticking to our promises. We’re keeping brain tumour patients and carers at the heart of everything we do, and we also promise to continue to work with our brain tumour patients and carers in a positive, upbeat and truly useful way.

We’re also introducing a third promise. We promise to be a rock to the people that need us, unmoving in these uncertain times. We want the brainstrust service of which we are now so proud, to be the first port of call to every UK brain tumour patient and carer.

Our workTHIS PAST YEAR has been a busy

one for brainstrust.

Our work has revolved around growing awareness of our services, helping more people, and taking steps towards making sure that our brain boxes, Meet Ups, websites and phone number are made available to as many brain tumour patients and carers as possible. This has meant many hours on the road, attending professional events, meeting patients, meeting nurses and shouting a bit more about what we do.

We want every brain tumour patient and carer to be able to access

n Our 24/7 support line

n One of our brain boxes

n Our literature

n Our Meet Ups

n Our website

And when they do? We want these people to know they are not alone: to feel like they have joined our brainstrust team, and to be certain that they are accessing Department of Health accredited information, developed by people who have had direct experience of a brain tumour diagnosis.

There’s enough to worry about in this world already. People shouldn’t have to worry about what to do next when they’re fighting serious illness. They should have all the right information, from the right people at the right time, to help them make the right decisions. And with your help, we can make that happen.

But, please, remember one thing. To keep our promises, and to be a rock to our patients and their carers, we need your support more than ever before.

It’s tough out there, and without you, we can’t keep our promises.

and all at brainstrust x

Dear Supporter

We’re proud of the fact that with your support, we’ve been able to create a truly useful brain tumour support service.

And now? We want everyone to use it!

Over 1500 people are keeping up-to-date with our news on facebook.Join them at www.facebook.com/brainstrust

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Patients and carers

Meet Ups in 2011and 2012

Brain Boxes

Professional events

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brainstrust’s COMMITMENT to excellent patient information has been granted an official stamp of

approval by the Department of Health, which has awarded the charity with the INFORMATION STANDARD.

The purpose of this DoH sponsored scheme is to give members of the public an easy way to identify trustworthy health information on the Internet or in print. An important thing when you read research that says:

n 71% of people would trust a website or a leaflet more if there was a quality mark on the information certifying it as trustworthy and reliable.1

n 3 out of 4 people find it hard to know which health and social care information to trust.2

The Information Standard mark signposts trustworthy information, so the public can find it quickly and easily. We like that!

Top 1%?With over 170,000 charities in the UK alone, brainstrust joins an elite band of just 126 to hold Information Standard accreditation. Or, the top 1%, we are also the first brain tumour charity in the UK with this mark of high quality information, and sit in illustrious company alongside the likes of Macmillan, the RNIB and Epilepsy Action.

Tightly controlled informationOur assessor, who conducted a rigorous two-day evaluation checking all aspects of brainstrust’s information said, ‘brainstrust is a small charity inspired by the experiences of the founders when a family member was diagnosed with a brain tumour. It has grown to be a national information resource for patients similarly diagnosed, and their carers, as well as funding, not so much research itself, but better ways of collating and sharing the research results, as well as sharing the experience of patients and carers. The production of patient information, which is central to the purpose of the charity, is tightly controlled, and draws upon the brainstrust panel of patients. carers, clinicians and specialist nurses.

The application was well-evidenced, and was reinforced by discussions the evaluator had with staff, trustees, their designer, a clinician and a specialist nurse. There is no doubt that the charity is committed to the Information Standard, has a realistic interpretation of its requirements, and has already demonstrated its ability to produce information to meet IS requirements.’

The Nurse view:‘Immediate access to trustworthy evidence based information’Ingela Oberg, a specialist nurse at Cambridge University Hospitals Foundation Trust, finished with, ‘As a neuro oncology specialist nurse I am delighted to know that a UK brain tumour charity has achieved the highest standard of information accreditation. For the patients it means they have immediate access to trustworthy, evidence based information which is not only informative, but also concise as well as regularly updated.

It means a lot to us as specialist nurses up and down the country knowing that we can signpost our patients and their families and carers to such a site, knowing they do not need to filter through any un-vetted online information that may cause them undue stress and anxiety! Well done to brainstrust and keep up the good work!’

Great news for brainstrust’s brain tumour patients and their carersBack at the ranch, our Trustees are delighted, and Will Jones, brainstrust’s Development Director reckons ‘This is great news, for a number of reasons – this will give our supporters confidence that the work we are doing is up-to-date and accurate. Secondly, and most importantly, the patients, carers and healthcare professionals who use our information can be confident that what we have to say is relevant, evidence based, authoritative, complete, secure, well-designed, readable and accessible.’

More informationTo find out more about the Information Standard, visit www.theinformationstandard.org

To learn more about brainstrust’s information, visit www.brainstrust.org.uk/advice.phpor call us now on 01983 292405

brainstrust’s work awarded

top quality mark

1 Capita Group Research/Research Now Survey 2010.2 Department of Health TNS Omnibus Survey, 2007.

by the Departmentof Health

Our 24/7 support line now helps over 800 patientsand carers directly with 10s of thousands more usingour online support pages

800 people

2009/10 2010/11 2011/12

250 people

500 people

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Tina – a patientTHE CONSULTANT I saw for my second opinion asked me for the histology report. I was really upset when I read it as it had all kinds of things on it that we had not been told. It suggested that it may be a mixed tumour with some oligodendroglial cells. We were told only that it was a Grade 1 benign pylocytic astrocytoma. I feel really let down by the clinicians because they didn’t share that information with us and we have had a whole year with no scans or follow ups and now the tumour is changing. If we’d known there were other cells which may have been a higher grade we might not have been so agreeable to yearly scans! I feel quite angry about it. But knowing I could have this information makes me feel I can take more control.

What having access to information can do for you: Three stories

Kirsty – a patientI HAVE MANAGED to access my medical records which contain a lot of information I was not aware of when I was initially diagnosed 8 years ago. I haven’t found the information upsetting; what is pretty upsetting is the information that has been kept from me. It was recommended I have treatments, which weren’t offered to me. I was not made aware of this and was told I would be on watch and wait.

I only know about it now because I have access to my records. Having this information means that I feel able to challenge the decisions taken about me – without me. This can’t be right in the current climate which is meant to be no decision about me, without me.

Andy – a carerSARAH, MY DAUGHTER, was diagnosed with a brain tumour when she was 12. We seemed to be thwarted by a catalogue of differing opinions, stressful tests and being kept in the dark about the correct way forward. Following guidance and support from brainstrust, we have finallybeen able to get the correct treatment for Sarah.

I would have liked to have been given all the information we needed to make the correct and informed choice. Several specialists were involved in Sarah’s care in the early days and it was both confusing and frustrating for us. We were given conflicting information and felt that we didn’t know enough to question what was being said. From being told that the operation to remove the tumour was ‘too risky’ to Sarah having to undergo a series of psychiatric tests to ‘see if she was ready for surgery’ made what was a worrying situation even more difficult.

Following brainstrust’s intervention, Sarah went on to have successful surgery and is now enjoying life as a normal 15 year old.

We persevered, we asked questions and we were not prepared to give up, or just to ‘wait and see’. Without brainstrust giving us the correct route, this might never have happened and we are hugely grateful to the charity and to the staff at Alder Hey who were able to quickly assess, treat and care for our daughter. If we had had more support and our voice had been allowed to be heard at the beginning, none of us would have endured the three years leading up to what was ultimately a successful outcome.

Putting patients back in the driving seat

Patient Access to Cancer Registry Information – The Brain Tumour Patient Information Portal

brainstrust and a group of our patients is working with The National Brain and CNS Tumour Registry (NBTR), to allow patients

access to information held about their tumour in the registry.

To be accessed through brainstrust’s brain tumour hub (www.braintumourhub.org.uk) the secure online portal means patients will be able to sit down with their clinician and view information that will allow them to understand their situation, find out more information for themselves, and be more informed partners in their care. They will have the opportunity to feed back data about their quality of

life to their clinical team, generating a valuable resource both for the team and for the wider brain tumour community.

Patients will be able to view histopathology reports, imaging reports and information about their treatment.

Consultation with patients and clinicians has shown that this portal will be a valuable resource that will grow as data flows improve across the NHS.

Helping patients to access their healthcare records is becoming more common and has well-documented benefits, as described in the recent Department of Health information strategy – The Power of Information.

The portal will be pilot tested at several sites across the UK before the national launch towards the end of 2012.

If you would like further information or have any comments or suggestions about the portal, simply give us a call on: 01983 292405or email: will@brainstrust.org.uk

brainstrust is working to give you accessto your brain tumour notes.

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launched forbrain tumour patients

DRIVEN BY PATIENT DEMAND for more information on current and upcoming clinical trials

in the UK, brainstrust has launched an easy-to-use, up-to-date and comprehensive database which everyone can access.

Only 10.8% of brain cancer patients signed up for a brain tumour clinical trial in 2010/11.

And only 1.1% of those were for randomized clinical trials. This is, in part, due to the lack of clinical trials in brain cancer. If more funding was put into researching this disease then the picture would be very different because more brain tumour trials would equal more patients and therefore more results.

New clinical trials database

So what are we going to do about it?To help promote activity in this area we’ve developed The Brain Tumour Hub to include an easy to navigate, comprehensive database of UK brain tumour clinical trials – allowing patients more visibility of what trials are taking place – which we hope will lead to more awareness of the need for research and in turn more funding.

The Brain Tumour Hub (www.braintumourhub.org.uk) already hosts a database of brain tumour support services and now also lists all upcoming and current brain tumour clinical trials. The navigation allows the user to search for brain tumour clinical trials by brain tumour type and answers an unmet need for a ‘one stop shop’ for patients who are interested in volunteering to be part of a study.

The content itself has been produced in collaboration with the National Cancer Research Institute (NCRI), neuro healthcare professionals and researchers from across the UK. The information is not only easily accessible by visitors who can just click to apply to become part of a trial but it is also easily updated and added to by the researchers themselves.

Helen Bulbeck said:

❝When patients are initially diagnosed they are desperate for information, support and advice on their condition which is why we set up our charity brainstrust. With our new Brain Tumour Hub database of clinical trials we are offering patients the chance to take control of their illness in a simple way which offers much needed reassurance at a very challenging time. We also know

that accrual rates for clinical trials are low so having this information easily accessible should help address this.❞

And what do the experts think?Commenting on the launch of the Brain Tumour Hub, Colin Watts, Clinical Senior Lecturer in Neurosciences at Cambridge University said:

❝Information empowers patients by placing themselves firmly at the centre of their own care; it also empowers clinicians by helping them to direct patients to resources that can help them fight brain cancer and recruit into clinical trials. The Brain Tumour Hub is a significant contributor to this enhanced process of care and is to be welcomed.❞

Our supportersThe Brain Tumour Hub has a big team of people behind it – not only our advisors from ‘the brainstrust’, but we are in constant consultation with the wider clincial and research community. We’ve also been fortunate enough to have support and funding from the Nominet Trust, an initiative that contributes to a safe and accessible internet used to improve lives and communities.

To see the Brain Tumour Hub in action, visit www.braintumourhub.org.uk

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Miles run in 2010/11: 2895and 11/12: 3078

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Brain Tumour Tissue BankAcross the UK, freezers are full of brain tumour tissue samples.

NO STRUCTURED RESEARCH BASE exists for brain tumour research and there is no UK

wide strategy of, or research into, neuro-oncology and so it remains fragmented, uncoordinated and underfunded.

This is due partly to the bureaucracy surrounding the use of human tissue, where tissue has been gathered first and ethical consent for use has followed. This has led to tissue banks being set up which are a closed resource to researchers; an initial trawl of three centres that returned data on current archive holdings (dating back to 1970) revealed that the potential of the network is clear to see – in excess of 50,000 surgical cases. Just sitting there.

brainstrust is working hard to change this. We’re working with key clinicians to build a UK wide network of brain tumour tissue banks. This bank will support a diverse range of research so that the prevention, diagnosis, and treatment of brain cancer are improved. At the moment we are focused on linking the existing archives of brain tumour tissue samples in one virtual network. The next step will support existing brain tumour tissue banks so that the surgical collection of brain tumour tissue

has full consent and clinical data attached and we can network the banks into this virtual network.

We’re really excited about this. This project will provide the interface that is needed between researchers and brain tumour tissue. Researchers will have easy access to the right tissue, in sufficiently large numbers and of high quality. So more research, better results, better outcomes for patients. Everyone’s happy.

The benefitsn Researchers will have access to a wider

range and quantity of brain tumour tissue. The development of stratified treatments for brain cancer will depend on the availability of this range and quantity and also large, population based, high-resolution datasets of clinical information on individual patients1.

n It will be easier to access the tissue needed, via a one stop shop, as a route will be provided for researchers to access the collective stock of brain tumour tissue held in member banks.

n Clear governance framework with ethics/R&D will be linked into studies.

n The creation of a UK wide virtual brain tumour tissue bank will promote and disseminate consensus on best practice.

n Communication within and without the research community will be strengthened – meaningful comparisons can be drawn.

n Increased patient awareness and understanding around the collection of tissue; patient voice can drive the agenda. Seeking authorisation for tissue collection from patients makes it meaningful and creates space to talk. Individuals who are informed about biobanking are much more likely to participate and give broad consent2.

n Improved data quality and context. During the past decade, legislative and other changes have driven increased standards of sample management, and the UK is well placed to build on this strong base to support research using brain tumour tissue.

Why now? Significant changes are happening within the health sector:

n Empowerment – ‘no decision about me, without me’ is fundamental to the current political healthcare agenda. Patient empowerment and closer engagement with their care lies at the heart of this initiative; patients leading the discussion with their surgeons about what happens to their brain tumour tissue is a key part of this agenda.

n Political push – The Calman Hine report highlighted that outcomes for UK cancer

2 Gaskell G, Gottweis H, (2011) ‘Biobanks need publicity’ in Nature, 471 (7337) pp. 159-1603 Department of Health (1995), A policy framework for commissioning cancer services: A report by the Expert Advisory

Group on Cancer to the Chief Medical Officers of England and Wales4 See http://science.cancerresearchuk.org./researtch/research-strategy/our-progress/stratified-medicine-programme/

for information on Cancer Research UK’s Stratified Medicine Programme

patients were worse than most other European countries3. The Government has a programme of action to ensure cancer services in England are among the best in the world by 2012. But this won’t happen unless scientists can obtain enough brain tumour tissue samples of good quality.

n Clincial need and stratified medicine – we are now treating the biology of cancer, rather than cancer. We can identify new genes, predict a likely outcome through biomarkers, and target treatment where the biology is likely to respond. But to do this large numbers of samples are needed. A particular challenge for the coming decade will be the increasing stratification of treatments and their tailoring to much smaller subsets of patients4.

n Data is a valuable commodity –an ongoing modernisation of cancer registries, combined with new datasets, is making a step change in the data available. The Patient Information Portal for cancer patients is being developed, with brainstrust, as a small-scale pilot using data in the National Brain Tumour Registry. This development will provide a unique resource for research, for clinicians and of course, for patients who have been diagnosed with a brain tumour.

To reach this point we have had excellent support and advice from James Nicol and David Hilton from Brain UK, Willie Stewart in Glasgow, Kathreena Kurian in Bristol and the British Neuropathology Society. Letters of support are flooding in. All we need is the £150k funding; we’re working on this! If you have any ideas then email helen@brainstrust.org.uk

1 European Commission, DG Research – Brussels (2010) Workshop report: Stratification biomarkers in personalized medicine. Available from http://ec.europa.eu/research/health/pdf/biomarkers-for-patient-stratification_en.pdf

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A PACKED ALL PARTY BRAIN TUMOUR GROUP (APPG) meeting provided an opportunity for around 60 members of the Brain Tumour

Consortium to quiz Secretary of State for Health, Andrew Lansley MP, over his plans for the NHS and to seek reassurances that the proposed new Health Bill will not set back brain tumour care.

The meeting was chaired by James Arbuthnot MP and started with short presentations from Professor Garth Cruickshank, Consultant Neurosurgeon and brainstrust advocate and brain tumour patient Daryl Gittins.

Prof. Cruickshank appealed to the Secretary of State to ensure that the NICE’s Improving Outcomes

Guidance remains an integral part of the care pathway and stressed the need for earlier diagnosis, citing evidence from Birmingham which shows that 85% of brain tumours initially present, not through Primary Care, but through casualty.

Patient ExperienceDaryl outlined his differing experiences in Swansea and London explaining that

A united frontbrainstrust at the APPG for brain tumours

his initial NHS Oncologist in Swansea made crucial decisions without any input from him. Ultimately these proved to be inappropriate whereas the treatment he received in London, after seeking advice from brainstrust, turned out to be less complicated and more suitable. He questioned why patients so often have to rely on the charity sector, in his case brainstrust, to navigate the post code lottery which exists in the NHS.

NHS VisionMr Lansley responded by setting out his vision for the future of the NHS in relation to brain tumour care. He outlined the three pillars of his proposed reforms starting with ‘no decision about me, without me’ to address Daryl’s concerns and he explained how shared decision making processes, such as new patient decision making aids, were already starting to help, for example on prostate cancer.

Pillar two focuses on decisions being made by health professionals, not politicians and Mr Lansley

explained how he sees new quality guidelines and stronger Cancer Networks will achieve this in a post Primary Care Trust NHS.

Pillar three, he explained, focuses on how best to deliver improved outcomes. He stressed that it is unacceptable that the UK lags behind comparable European nations when it comes to brain tumour outcomes and stressed that ultimately he wants survival rates for brain tumour patients to be better in the UK than in Europe.

A United FrontAt brainstrust the big take out for us was that we had people who represent all aspects of the brain tumour community involved in a free flowing, animated discussion. It is clear that we all want the same things – earlier diagnosis, better outcomes and more research and for the first time we felt that there was a clear and united front on this.

To find out more about how you may be able to help us with campaigning, call us on 01983 292 405

brainstrust advocate and brain tumour patient Daryl Gittins (right) talks with Secretary of State for Health, Andrew Lansley MP

More support.More research.brainstrust and the Samantha Dickson Brain Tumour Trust to collaborate

WE ANNOUNCED IN JUNE 2012 that we’ve made some new friends. From now on we will be collaborating with the UK’s biggest

brain tumour charity, the Samantha Dickson Brain Tumour Trust (SDBTT) on certain projects so that we can support more patients, and they can do more research.

The new collaboration will help brain tumour patients, clinicians and researchers. We will work in partnership to increase research output and to accelerate the delivery of brainstrust’s support services on a national level.

This new collaborative approach has been designed by both charities to better meet the needs of the people that need us while also ensuring that the distinct work we both undertake remains a clear priority.

Already agreed is a programme of Meet Ups and information days for brain tumour community and a commitment to direct fundraising efforts towards Association of Medical Research Charities (AMRC) approved projects that are currently underway with SDBTT. Also on the collaboration agenda is the cross-promotion of

all sources of support and advice by both charities. This will give an increased sense of guidance to visitors to both websites and all callers.

From now on, the two charities will be working alongside each other but will remain as two separate entities. SDBTT will focus on brain tumour research and information, and brainstrust on growing the reach of its acclaimed brain tumour support service. The organisations will work collaboratively to achieve their goals in these areas. The Charities’ Commission recently published research that shows that charities that collaborate are able to offer an improved service, can increase the reach of their services and can have a greater impact. Want to find out more about this collaboration or to help us organise a support event? Call today on 01983 292405.

300 peoplehave attended a brainstrust

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OUR SECOND EVER ‘An evening with...’ event, this time featuring Rory Bremner, has

been a huge success, attracting 200 people and raising over £5,500. The money raised will be used to help us secure better outcomes, support and treatment for our brain tumour patients.

The event in Winchester Cathedral’s stunning nave was introduced by Canon Roly Reim. The warm up act, Karen Bayley had the audience laughing loudly before Rory Bremner took to the stage with his quick witted coverage of topical events, which brought the crowd to rapturous applause.

Helen Bulbeck our ‘grand fromage’, said of the event: ‘This evening with Rory Bremner has been a huge success for

brainstrust. Our work with brain cancer patients across the country is very serious, but we like to show that you can support a serious cause and have a great time. It’s always a pleasure holding events in our hometown, and to have the support of Winchester Cathedral and local businesses, Warren’s Office, Biopharma and Quayline Digital has been an added coup for us. Without these people, we wouldn’t be able to tell this tale of great success which will have a huge impact on our work with brain tumour patients across the country.’

And what did Rory Bremner have to say? ‘It was a real pleasure and I thoroughly enjoyed it’, and to support act Karen Bayley on twitter, he says ‘Great working with you... ...thought we’d do York Minster next. And then tour. Sistine Chapel, Chartres, the Wailing Wall’.

Prem ShahClimbs to Everest Base Camp in February 2012and raises over £6,500

makes an impression for brain tumour patientsSo you can have a laugh and support a serious cause!

RORY BREMNER

MOUNTAINS AND CHALLENGES are a big part of what we do. They are a great metaphor. We help brain tumour patients and carers

conquer their own personal mountains, helping them take control and work towards the best possible outcome for their situation. We’ve also helped numerous brainstrust supporters to the top of mountains so that they can meet their personal aims and fundraising targets.

Prem Shah contacted us over a year ago now, out of the blue. He said, I want to go to Everest for you and my cousin. We said ‘ok’ and things spiraled from there. Prem’s idea became a reality in February this year, and we feel privileged to have been able to make this happen for Prem, and his cousin Amit. Here, Prem recounts his adventure:

“Just over a year ago, I lost my cousin Amit to a brain tumour. Before he passed away, I made a decision to try and do something to honour him

and raise money for his chosen charity, brainstrust.

I’d never done anything physical or strenuous before. No 5k run and certainly no mountain trek. Everest Base Camp seemed

a fitting tribute to Amit for such an inspirational and amazing man.

Training started around 9 months before the trek, and consisted of regular cardio, eating healthily, and going for long walks. I felt myself get stronger every day.

On February 10th 2012, we left for Kathmandu and then soon after, flew into Lukla airport near Mount Everest (or Sagarmatha as the locals call it, ‘Mother of the Sky’).

Landing at Lukla was a thrill in itself, as it is considered to be the world’s most dangerous airport.

The following days involved 6-8 hours of walking every day, with the air getting thinner and colder with each passing day. Our sherpas were a god-send, providing us with the moral support and valuable knowledge. Once we passed Namche Bazaar things started to get harder. On the day we were to reach Base Camp,

Continued on page 16...

How you’ve helped

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The 1988 Anglo-American ascent of EverestThe reunion event in March 2013, which is happening in the same year as the 60th anniversary of the first descent of Everest, will be a wonderful opportunity to hear from the four climbers and their base camp team about the perilous journey which saw them not only pioneer a new route up the mountain’s biggest face, but also saw brainstrust patron, Stephen Venables surviving an unplanned night in the open at 28,000 feet – a world record for a solo bivouac.

The one-and-a-half hour presentation will include some of the most dramatic photographs ever taken on Everest, illustrating first hand tales from the team which forged one of the hardest routes up the world’s highest mountain, without the help of high altitude porters or oxygen equipment. They called their route ‘Neverest’. Lord Hunt, patron of the expedition, described it as ‘amongst the most remarkable ordeals from which men and women have returned alive’.

This will be the first time that the entire team has been together for 25 years

– a unique opportunity to hear how they wrote one of the most extraordinary chapters in Everest’s history.

This bold and successful attempt included:

n Small team of justfour climbers

n No support by high altitude porters

n No supplementary oxygen

n Spectacular new route up the mighty Kangshung Face in Tibet

n World record solo bivouac at 8,600 metres

n Epic retreat by Venables, Anderson and Webster

n John Hunt, leader of the 1953 ascent, was ‘Honorary Leader’ of Everest 88

❝The one-and-a-half hour

presentation will include some of

the most dramatic photographs ever

taken on Everest❞

The teamRobert Anderson (US) Leader, advertising executive

Ed Webster (US) World famous rock climbing pioneer

Paul Teare (US/Canada)Carpenter and rock climber

Stephen Venables (UK)Summit climber, writer and public speaker

Core support teamNorbu Tenzing (US) Son of Tenzing Norgay who made the first ascent

Mimi Zieman (US) Physician, expedition doctor

Joe Blackburn (US) Expedition press and advertising photographer

Pasang Norbu (Nepal) Expedition sirdar (headman) and cook

Tickets for the exciting evening will be on sale soon. If you’re interested in hearing about the event as plans develop, and for the opportunity to reserve a seat, simply drop us an email: Jacqui@brainstrust.org.uk,or call 01983 292405

THIS HISTORIC EVENT willbe celebrated at the Royal Geographical Society in London

on Thursday March 14th, 2013, and we’re chuffed that brainstrust has beenasked to be the main charity beneficiary for the evening.

This event will bring together for the first time in 25 years, the entire team; Englishman and brainstrust patron, Stephen Venables and Americans, Robert Anderson, Ed Webster and Paul Teare. This iconic 1988 Anglo-American ascent of Everest has been described by Reinhold Messner as ‘probably themost adventurous in Everest’s history’.

This celebratory evening will be a wonderful opportunity to hear from the four climbers and their base camp team about their perilous journey.

Everest 25/60Be part of the 25th anniversary of the first British Everest climb without supplementary oxygen

We are finalising arrangements with the event’s sponsors at the moment – if your company is

interested in being associated with this event, then it’s not too late – call us today on 01983 292405

almost two weeks after the trek started, I was feeling so rough I was being sick at the side of the road, my head was spinning, my back was hurting and I hadn’t eaten much at all for a few days. But none of this mattered, as the cause I was trying to support reminded me that so many others like Amit, have endured a thousand times worse. I had no right to complain.

Once we reached Base Camp, everything was very blurred and very emotional. I had finally reached my goal, but for me the journey was more memorable than the destination. Trekking with new and old friends in such a beautiful part of the world was unforgettable. And best of all, I realised that anyone, even an average fella like me, can do something significant to help such an amazing cause.”

If you’d like to remember someone by doing some-thing out of the ordinary, then we can help you to do it. Simply give us a call on 01983 292405, oremail helen@brainstrust.org.uk and together wecan make it happen.

...continued from page 15

£1.5 million raised so farYear 1: £78k

Year 2: £49kYear 3:

£211.6k

Year 4: £330kYear 5: £354k

Year 6:£400k

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...quietly confident that we’d be able to achieve what we set out to do...

Things got off to a bad start – there was an icy 40mph headwind blowing straight off the Langjokull and Hofsjokull glaciers that sit either side of the F35. Still, our task wasn’t insurmountable, just hard work, and we’d probably lose the 55 mile head start we had on our first night. Setting off, we had a quick chat with a 4x4 driver who’d just come down the road we were heading up. ‘Turn round – too much snow’ were the five words that sealed it for us. It transpired that there were 4 feet of snow still covering the road at its highest point, meaning that the surface hadn’t been graded following the harsh winter. This was unheard of June. But with discretion being the greater part of valour, we decided it would be silly to continue – we had packed 3 season sleeping bags and were sleeping in summer, one man tents to keep weight down. All perfect gear for a normal Icelandic summer. Which clearly this wasn’t.

So plan B. Back to the ‘ring road’ for an anti-clockwise circumnavigation, picking up the F35 in 8 days time, from the North, by which time the snow will have been cleared and the road graded. Splendid.

So, 40mph tailwind helping us, we made it down to Vik, 120 miles or so away in just 2 days, passing some incredible sights and about 1 town on the way. Here we were met with our second ‘hiccup’. We were stopped in our tracks by a horrendous amount of volcanic ash, wafting around following the Grimsvotn eruption that had happened a few weeks prior to our arrival. It was truly awful, getting into our eyes, mouths,throats, ears and doing untold damage to our bikes. Talking to local people only confirmed our fears, that once past Vik, and in the shadow of Grimsvotn, the North Westerly winds were spreading the ash thickly across everything, making travelling difficult even by car.

A predicament. We couldn’t head North/clockwise because of the snow, and now we couldn’t head South/anticlockwise because of the ash. We couldn’t believe it! 250 miles in, 5 days down, and we were effectively ‘stuck’ in the South West corner of Iceland. In retrospect, we were lucky to have even made it there with the volcanic eruption causing chaos in the weeks preceding our trip, but what a blow.

That night, we made the tough decision to abandon the circumnavigation, and make the most of what there was to offer in the South West of the country, but in keeping our promise to our sponsors, we’d ride every day, and aim to cover a similar mileage to that involved in a full circumnavigation.

So with new route mapped to take in the best of South West Iceland, we set off.

...in keeping our promise to our sponsors, we’d ride every day, and

aim to cover a similar mileage to that involved in a full circumnavigation.

Then, on the 8th day my bike broke. I’d been ignoring a funny noise from the front hub for a couple of hours (big mistake), on one particularly fast downhill on the way to Pingvellir, the squeak became a grinding noise, followed by a screech and a load of swarf ejecting itself from either side of my front hub, which had collapsed. It would later transpire that my (new) forks had developed a huge crack. Game over. We’d managed 500 miles, camped in some truly spectacular places, met some amazing people and seen some of the best landscapes in the world. We’d also endured some hideous weather, woken up with our sleeping bags covered in frost, and cycled on roads that don’t deserve to be labeled as such. We managed to raise £1155.00 to help brainstrust’s patients and carers. So all in, the trip was a huge success! Would we do it again? YES!

MIKE PURRETT AND I took a couple of weeks off work to ride our bikes round Iceland’s

ring road back in June 2011. Or at least that was the plan.

Lost tents, broken inner tubes and brutal headwinds aside, we made cracking progress over the first three days of the trip. The 55 mile head start on the night we landed helped here, putting us in Geysir (120 miles into our 900 mile trip) a day ahead of schedule. Great news! Settling into our sleeping bags that night (we were travelling unsupported, carrying all our gear on our bikes) quietly confident that we’d be able to achieve what we set out to do – a near circumnavigation of Iceland on the ‘ring road’, only broken with a detour up the F35 road across the country’s uninhabited interior to keep things challenging.

Day 3, 10 miles up the road from Geysir we arrived at Gulfoss, a monstrous waterfall. We popped into the café for coffee, and to prepare our kit for the trek across the interior, where we were unlikely to see any sign of civilization for 3 days.

An adventure in

Icelandbrainstrust’s Will Jones recounts on an epic journey by bike around Iceland. Nearly.

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WOW. WHAT A GREAT EVENT. 13 miles of running on closed roads in sunny central London to live music.

20 toned and athletic team brainstrust runners hip-hopped, dub-stepped and boogied their way around the course raising a fantastic £8000 for our work to support brain tumour patients and their carers from around the UK.

One family, who we most definitely can’t let go below the radar were the Bridgemans who raised a stunning £4123 for brainstrust to mark the anniversary of Husband and Dad, Keith’s passing following a battle against brain cancer.

Janet, Keith’s wife, said “There was a really good atmosphere and I can honestly say we were five very chuffed people at the finish. We raised a glass to Keith when we met up after the race for pizza and drinks with friends and family on Blackheath.

DAVID MUTTON CYCLES FROM LONDON TO PARIS, RAISING OVER £3,000... THE GADD FAMILY AND VR LIMITED RAISE OVER £13,000. . .CLIVE WOOSTER AND THE LEARNING CURVE TEAM RAISE OVER £3,000 WALKING THE ISLE OF WIGHT...

40 RUNNERS IN THE ROYAL PARKS HALF MARATHON RAISE £23,400. . . LONDON TRIATHLON RAISES £6,900 FOR OUR WORK... SOUTHERN ELECTRIC RAISE £625. . . TEAM STANNAH AT THE GREAT SOUTH RUN RAISE £1,170... SHAUN SKINNER’S 40TH BIRTHDAY BASH RAISES £2,000. . .

Run to the Beat London 2011

Keith was diagnosed with a malignant brain tumour in February 2001. He was only 52 when he died seven months later. He had always been fit and healthy, it was a great shock which still reverberates. He was a very gentle, loving man and that has helped us but his loss is still felt very much. It was a tremendously difficult seven months on so many levels and I certainly felt very isolated. It would have been good to have linked in with an organisation such as brainstrust. Great though to learn about you now and I’m sure we will as a family been keen to support and help from now on.”

So, to Janet, Sarah, Katie, Tom and George – THANK YOU, from all at brainstrust.

We are equally indebted to Allanah, Susannah, Thomas, Alison, Renay,

Daniel, Angus, Kate, Sofia, Heather, Nikesh, Sath, Jayesh, Brian and Hugo who all made our team brainstrust running shirtslook good and helped us achieve this magnificent fundraising total.

So will we be back this year? DEFINITELY. If you’d like to save a spot in this year’s event, then drop us a line on 01983 292405or email tessa@brainstrust.org.uk

Need persuading? Well we have it on good authority that this is ‘THE BEST HALF MARATHON EVER’.

See you there!

Team Bridgeman

WE WERE UP EARLY to set upfor our first ever Cardiff 10k.

And we just knew that it was going to be a good day.

60 people had registered to run with brainstrust, and every one of them had a special reason for doing so. The sun had made an appearance. Great news given the weather the previous day – driving down the dual carriage way near Ross on Wye at 15 mph in a torrential downpour had done little to adjust preconceptions of the Welsh weather.

8am and 4 weapons grade coffees later, Tessa and I met the team brainstrust runners as they began to arrive. It was entertaining to see some of the guys from Bute Property Services battling pretty nasty hangovers. Still, nothing a quick jog round sunny Cardiff wouldn’t sort right?

It was also great to finally meet Ian Phillips and Jeni Addicott, both with huge teams running with them – it’s always humbling to have people value our work so highly that they have motivated so many friends, family and colleagues into taking on such a challenge.

With team brainstrust shirts on, sun out, and team photo taken, our group began to warm up. Unless you were the chaps from Bute in which case a smoke and a lie down seemed to be the best preparation for the extreme physical exertion that lay ahead.

And then, time to go! For me, it was an incredible sight to see so many team brainstrust shirts setting off at once. A sightI won’t forget in a hurry. It was moving, stood next to the start line, looking at all these people, most I’d never met face to face, who were so grateful for everything we’ve done. I remember thinking how far we’ve come since Rebecca Shackelford ran the first ever event for brainstrust in 2006 (the Reading Half Marathon) and Meg’s operation to remove her brain tumour in 2007.

The 2011 Cardiff 10k was a reaffirming event for me. Hearing direct from patients and carers how we have made a difference is an incredible thing. So Cardiff, thank you. Not just for raising an astonishing £16,100, but thank you for saying thank you. I promise to work harder than ever to make sure we reach every brain tumour patient and carer that needs us, and who wants to feel more in control of their situation.

If you’d like a place in the 2012 Cardiff 10k, then simply drop Tessa a line at tessa@brainstrust.org.uk or call us now on 01983 292405. We’ve already had 15 entries – so you’re guaranteed to be part of an amazing team.

The Cardiff 10k – thank you for the thank youBy Will

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Clayesmore SuperstarsA MASSIVE THANK YOU to everyone at

Clayesmore school, Dorset, who worked extra hard last year and raised an astonishing £2000 for our work with brain tumour patients and carers.

The funds raised will keep our 24/7 phone and email support line open for a month, or pay for 40 more brain boxes, or more than cover the cost of the second edition of our Little White Book. What a lovely decision for us to be able to make!

The fundraising kicked off when we attended an assembly at Clayesmore school early in 2011 where the children learned all about the Snaggle Tooth Splat.

We’re grateful for everything the team at Clayesmore have achieved for us so far. Thanks guys!

If you have links with a school and would like to get them on board to help us do more to help brain tumour patients and carers, simply give us a call on 01983 292 405 and we can help you set the wheels in motion.

“The brainstrust Meet Up group gives people affected by a brain tumour the opportunity to meet others, share experiences, learn and laugh. If you are affected, do join and attend a Meet Up if you can. The brainstrust team is so welcoming. Fantastic!” (Carer, London, 2012)

WE’VE BEEN TRAVELLING UP AND DOWN THE COUNTRY meeting up with the brainstrust brain tumour community for

evenings filled with chatting, lots of laughter, a few tears, and plenty of food and drink.

All brainstrust Meet Ups have received 5* ratings, and patients and carers have told us how much they value hearing about other peoples’ experiences and sharing their own stories “It was so great to meet people affected like us and to be able to share experiences. I hope we helped others a it – it certainly helped us” (Carer, London, 2012). Importantly, brainstrust Meet Ups are held in casual, welcoming environments, which adds to the easy and open atmosphere “Good evening that was very relaxed and informal”(Carer, Sheffield, 2012).

We started off the year in Pizza Express, Winchester, where our community has

grown hugely. It was a very special evening as not only were there new faces, but familiar ones from previous Winchester Meet Ups and friendships have since been forged “Wonderful to meet everyone again. Old and new

friends sharing experiences and having fun!” (Patient, Winchester, 2012).

A Meet Up in the heart of Soho, London to mark Brain Tumour Awareness Month, followed in March.It turns out folk in London like to stay up late! It was a great evening, with pizza and wine flowing, and the room was buzzing with chatter. The sleepy brainstrust team had to sneak off to their beds and leave them to it! “It was good to talk to people who are or have been in the same situation as me. I hope I was able to

Let’s...provide some reassurance to those who had only recently been diagnosed” (Patient, London, 2012)

Bournemouth followed in April, and in May our Meet Ups arrived in the North. We had a fabulous evening in the new Mud Crab restaurant, Sheffield, thanks to the generosity of Nick Wolstenhome and the May Hearnshaw Trust. About 30 patients, carers, healthcare professionals and fundraisers joined us and we can’t wait until the next one! “Thanks to brainstrust for a wonderful evening. Despite the fact that I’ve been on this journey for what feels like a long time, it felt like a huge leap forward”(Carer, Sheffield, 2012).

We’ve got a very exciting programme of Meet Ups planned for the rest of the year. Sign up to www.meetup.com/brainstrust and keepan eye on Meet Ups near you.

Meet Ups near you in 2012…n Newport,

17th Septembern Sheffield

1st Octobern London

9th Octobern Scotland (Cities TBC),

Novembern Manchester

December

The Bruce Faulds Memorial Clay ShootLAST JUNE we held our second shoot in memory

of Bruce Faulds who sadly died of a brain tumour in 2010.

Held at Owls Lodge Shooting School, Barton Stacey in Hampshire, and run by Olympic Gold Medalist and brainstrust patron, Richard Faulds, it was an immensely enjoyable and successful day. We had over 180 entrants shooting at all levels for trophies, prizes and just for fun.

Richard is a team GB entrant for the London 2012 Olympics but this hasn’t stopped him from hosting this year’s shoot to remember his Dad.

It will take place on Saturday September 8th at Owls Lodge and we are hoping to attract even more people to remember Bruce, support our work and (hopefully) congratulate Richard on another medal.

To come along email jacqui@brainstrust.org.ukor telephone: 07768 743 792.

U PCOMI NG EVENTSEvent Location Date Event details

Glasgow 10k Glasgow 2 September Join 23,000 runners and walkers in the Great Scottish Run through the historic streets of Glasgow

Cardiff 10k Cardiff 9 September Starting and finishing at Cardiff City Hall, this very popular course passes through the fabulous Cardiff Castle grounds and iconic City Centre

Meet Up Newport 17 September To rsvp for this Meet Up please visit: www.meetup.com/brainstrust

London Triathlon London 22 September The first mass participation event in London after the London Olympics 2012. Promises to be an iconic event!

SBNS Autumn Meeting

Leeds 26–28 September

The Autumn meeting of the Society of British Neurological Surgeons

Bristol Half Marathon

Bristol 30 September In its 24th year, this flat, fast course is very popular with participants and spectators in the city of Bristol

The Bruce Faulds Memorial Shoot

Barton Stacey

September Join us, and our patron and Olympic Gold Medalist Richard Faulds for the annual Bruce Faulds Memorial Clay Shoot.

Meet Up Sheffield 1 October To rsvp for this Meet Up please visit: www.meetup.com/brainstrust

Wear Grey For a Day

1 October brainstrust supporter Shaun Skinner has already motivated over 1,460 people to take part and raise awareness of brain tumours. Wear grey for a day and join them.

Royal Parks Half Marathon

London 7 October This very popular half marathon, starting and finishing in Hyde Park, is one of the most scenic runs in the world

Meet Up London 9 October To rsvp for this Meet Up please visit: www.meetup.com/brainstrust

Run to the Beat

London 28 October Starting and finishing at the O2 Arena with live music stations along the way, this is a great half marathon for both runners and music lovers

Great South Run Southsea 28 October The UK’s largest 10mile run with 24,000 runners, televised live on Channel 5

No Patients Allowed!

Birmingham October A day dedicated to carers of brain tumour patients. Organised in collaboration with Samantha Dickson Brain Tumour Trust

NCRI Liverpool 4–7 November The National Cancer Research Institute Cancer Conference is the leading international cancer research meeting in the UK

Meet Up Scotland November To rsvp for this Meet Up please visit: www.meetup.com/brainstrust

To find out more: Call us on 01983 292405 or email: tessa@brainstrust.org.uk

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Fundraiser Focus: Lee Griffiths – 26point2by52IN 2010 AND 2011 I decided to run in the Cardiff 10k and Cardiff Half Marathon for my friend and fellow Bedwas RFC second row partner, Ian Phillips. Ian was

diagnosed with a brain tumour in 2009. Ian is an inspirational chap with a resilient character.

His continued battle meant more to me than ‘a few runs’. Towards the end of 2011 I resolved to take on a much bigger challenge; 2012 was going to be a full year of running. My challenge is to run the equivalent of a marathon every week of the year, that’s 26.2 miles for each of the 52 weeks in 2012! Whilst the distance may seem vast the real importance is that Ian knows this is my way of supporting him and brainstrust.

The 19th June was a bit of a milestone which saw the total mileage run so far reach 681 miles which is half way through the challenge and slightly ahead of schedule!

The sponsorship I’m hoping to raise for brainstrust is £1 for everymile run. I find fundraising more difficult than the running but it has been going well with 75% (over £1,000) donated so far. You can follow my running and fundraising on Twitter: @26point2by52 and youcan sponsor me on: www.justgiving.com/26point2by52