The Brain Tumour Charity shining a light on The GREY MATTERS Research | Awareness | Support Issue 11 Spring 2016
#WearItOut for Bandanas for Brain Tumours Day 2016
Peer review process explained
Thank you for walking with us! thebraintumourcharity.org On the cover (Front image) Bandanas for Brain Tumours Day ...... 28 Peer review process explained ...... 8 Thank you for walking with us ...... 26
Don’t miss... Research updates ...... 4 Q&A with Prof Richard Gilbertson ...... 7 Off-patent drugs bill blocked ...... 11 Visit our Children and families survey ...... 12 new website HeadSmart news ...... 14 My personal Everest ...... 16 We’re excited to announce the launch of our new website, developed with Why being part of the Research insights from our supporters. Involvement Network matters to me .... 19 Our support services ...... 20 Our pages on understanding brain tumours, symptoms and treatments New corporate partnerships ...... 23 have all been made easier to read, print and share via social media. We’ve also developed the jargon Over 9,600 people are buster that featured on our previous site into a fully interactive tool, diagnosed with a primary offering extra details on longer brain tumour every year. medical terms so that everything is easier to understand. We remember all those who have lost their life Our aim is to ensure that everyone using our website can find what to a brain tumour and they need – whether you’re looking those who have lost for support and information after family and friends. diagnosis or want to get involved with campaigning and fundraising. Pictured on the front: Louis (aged eight thebraintumourcharity.org on the far left) and his family will #WearItOut with strength following his diagnosis of a brain tumour in 2015. 2 The Grey Matters Issue 11 Image: Jose with members of the Romford Support Group at The Twilight Walk 2015 in Windsor. Tricia is fifth from the left and Kim fourth from the right. Hello
Welcome to The Grey Matters, packed to share a common unity when facing full of news from The Charity, adversity made us feel really proud to do updates on research developments, the job we do. We were pleased to read and your inspirational stories and of all the research updates (page 4) and to accomplishments. hear about the support and information provided to those who are affected (pages We’re both neuro-oncologist nurses at 18 and 20) in this issue, and to know that Queens Hospital Romford and have been all the money raised by those who joined working with people with brain tumours us on The Twilight Walk is in safe hands. for over 14 years between us. Because of our strong ties with the brain tumour We can’t wait to be united with the community, we joined The Twilight Walk brain tumour community once again in Windsor last autumn which we walked for Bandanas for Brain Tumours Day on alongside our families and one of our 4 March (page 28). This is an event we take patients, Jose (centre in picture above). part in every year, along with many of our Jose chose to push, rather than sit in, his patients, and we’ll #WearItOut with love wheelchair the whole 10km and we were for all those who we support this year. particularly proud to re-live his story when reading it on page 16. We look forward to standing shoulder to shoulder with you once again. The Twilight Walk was one of the most humbling things we’ve done. To meet Kim and Tricia so many courageous people wanting Neuro-Oncologist Nurses, Queens Hospital Romford
The Grey Matters Issue 11 3 Research updates
Thanks to your support, we can invest in forward- thinking, patient-focused research. Here are some of the latest developments from our labs:
Newcastle University Professor Steve Clifford’s lab has been investigating the genetic defects that are present in group three medulloblastoma. It has been found that a gene called VAV1 is overactive in 70% of people in this group but when it is switched off there is a reduction in tumour growth. This discovery provides a new target for drugs that may be able to reduce activity of the gene.
University of Leeds Centre for Translational Neuro-oncology Professor Susan Short and her team have started investigating whether a harmless virus can be used to target and destroy cancer cells. In initial studies, nine glioma patients were injected with the virus and in eight of these patients, the virus was shown to have successfully reached the brain tumour. This is an important discovery, as many drugs can’t pass through the protective barrier that surrounds the brain.
4 The Grey Matters Issue 1011 University of Glasgow Professor Anthony Chalmers’ lab has begun to investigate the invasive properties of glioblastoma cells and develop new methods to detect and treat the disease. They are working in collaboration with the Beatson Drug Discovery Unit to test a new drug that blocks the activity of a protein found in glioblastoma cells. If successful it would mean that the tumour cells couldn’t invade the surrounding healthy brain tissue.
University of Cambridge Dr Colin Watts and his team have been studying glioblastoma samples and have proposed that tumours are comprised of three different regions. The team have utilised fluorescent dyes which ‘light up’ the different regions of the tumour and have collected samples from each, allowing them to determine their genetic make-up and response to drugs.
UCL Institute of Child Health, London Dr David Michod has been investigating the role of the protein DAXX in childhood glioma. The lab at UCL has studied three different types of glioma and discovered that abnormally high levels of modified DAXX occur in glioma samples. These changes to DAXX could give researchers a better understanding of the disease, resulting in a more accurate tumour diagnosis and the development of drugs to target DAXX.
For more research updates, visit thebraintumourcharity.org/our-research The Grey Matters Issue 1011 5 Where we’ve been...
Glioma The NCRI The Society Conference Cancer for Neuro-
Every year we sponsor Conference Oncology the Glioma Conference Last November, during the Conference in London which brings National Cancer Research together leading researchers At the Society for Neuro- Institute (NCRI) Cancer and clinicians to discuss Oncology (SNO) Conference Conference in Liverpool, the progress being made in the USA last November, we had the opportunity in understanding the we heard about the to meet researchers, hear causes of glioma and the industry’s newest research about the latest research development of treatments findings and hosted a developments, share ideas available. discussion on low grade and develop alliances gliomas. With those in At the latest meeting, talks with others in the cancer attendance working in the were given on choroid community. brain tumour research field, plexus carcinoma – a rare We hosted an event for we were able to delve, but aggressive type of neuro-oncologists, neuro in depth, into the problems childhood brain tumour surgeons and scientists they face and what is needed – and a new research working in the field of to accelerate research project helping improve brain tumour research, in the area. We will be our understanding of brain allowing us to promote using this feedback when development. Glioma our funding calls and further further implementing our Conference is co-hosted encourage collaboration A Cure Can’t Wait research by Professor Paolo Salomoni across the field. strategy, which can be read from the Samantha Dickson at thebraintumourcharity.org/ Brain Cancer Unit, UCL. a-cure-cant-wait
Where we’re going… Keep an eye out in the next The Grey Matters to hear about our upcoming conferences in Liverpool; the International Symposium of Paediatric Neuro-oncology (ISPNO) from 12 – 15 June and the National Paediatric Information Day (NPID) on Saturday 11 June. To register for the Information Day, visit thebraintumourcharity.org/NPID
6 The Grey Matters Issue 11 Q&A with Richard Gilbertson
We caught up with Professor Richard Gilbertson, our new Chair of GRAM (Grant Review and Monitoring committee), who recently joined the Cancer Centre at the University of Cambridge from St Jude Children’s Research Hospital in the US.
What attracted you to the What plans do you have for shaping Cambridge Cancer Centre? the Cambridge Cancer Centre? Having worked for 15 years in the US and We have generated a new 12 program served on many external advisory boards, structure that engages over 600 doctors Cambridge is the most impressive scientific and scientists and spans all the hospitals, environment I have encountered. I really feel institutes and departments in Cambridge. that anything is possible here and we will The structure also engages our new research make a difference for patients. partners in the pharmaceutical industry, and in physics, chemistry, engineering, maths What was the highlight of your and astrophysics. These great minds are now career at St Jude’s Children’s working together to defeat cancer and are Research Hospital? defining a roadmap for cancer science I served as the Director of the National in Cambridge for the next five years. Cancer Institute (NCI) Comprehensive Cancer Centre at St. Jude. In 2013 we were How does the next five to ten years re-designated as an NCI Comprehensive of brain tumour research look to you? Cancer Centre with a score of ‘Exceptional’ There are four key areas where we should - the highest score awarded by the NCI. see developments; repurposing (where we take drugs used for other cancers Please could you tell us about or diseases and use them to treat brain your role at the Cambridge Centre. tumours), developing targeted treatments, I serve as Li Ka Shing Chair of Oncology, immunotherapy (which uses the body’s Head of the Department of Oncology and immune system to fight cancer), and Director of the Cancer Centre. I’m working targeting the healthy cells and tissues with the faculty to develop a new strategy that surround and support the tumour. that leverages all the great science and clinical care ongoing in Cambridge. My own To read more about out what Professor lab studies the origins of cancer, particularly Richard Gilbertson had to say, visit children’s brain tumours, and is seeking thebraintumourcharity.org/ to develop new treatments. richardgilbertson
The Grey Matters Issue 1011 7 Peer review process
We fund research through a fair, open and 1 This is an invitation to all researchers transparent process called to apply for funding. It outlines the peer review, recognised as type of research required and specifies best practice in awarding the amount of funding available over research grants. We’re a specific time frame. proud members of the Association of Medical THE C Research Charities ALL (AMRC), which governs this process. We’re Following external peer review, all confident we fund only the 4 applications, review forms and responses best research that has the are sent to the GRAM committee who greatest chance of success make a recommendation on whether to to improve diagnosis fund the project or not. The GRAM panel and treatments of brain is an international team of independent tumours. scientific and medical experts and patient We’re delighted to have representatives who see applications, passed our peer review giving them a comprehensive view of all audit for 2015. Of our proposals. They make recommendations submission, the AMRC on who to fund. commented: “This was a very clear and well GRAM written audit response. The committee agreed that the information and links were very helpful 5 The Research Sub-Committee meet and that the peer review to discuss the GRAM committee’s process was robust.” recommendations. The Research Sub-Committee is made up of members of The Board of Trustees – both lay members and those with a scientific background.
RESEARCH SUB-COMMITTEE
8 The Grey Matters Issue 11 Our current
2 The applicants have several months to GRAM complete their application which includes committee in-depth scientific details of the proposal, the applicants’ CVs, the rationale behind members: their ideas, what they hope to achieve, Chair: Professor how it will benefit those affected by Richard Gilbertson a brain tumour and any ethical issues that need to be addressed. Dr Antony Michalski, Great Ormond Street Hospital for Children APPLICATIONS RECEIVED Dr Simone Niclou, Public Research Centre for Health, Luxembourg Professor Susan Short, 3 All applications that have been University of Leeds submitted are peer reviewed by external experts in the same field. Professor Martin Our Research Team source these peer Taphoorn, VU University reviewers by looking for research Medical Center scientists who work in a similar field, Amsterdam, but do not have a conflict of interest. The Netherlands Applicants are then given the opportunity to respond to any comments. Professor Chris Twelves, St James’s Hospital, Leeds Professor Martin van den PEER REVIEWED Bent, Erasmus University Hospital, Rotterdam, The Netherlands Dr Ian Waddell, University of Manchester Mr Peter Moreton, 6 The full Board of Trustees have Lay representative the final say and decide whether Mrs Karen Ackling, or not to award the grant. Lay representative
BOARD OF TRUSTEES
The Grey Matters Issue 11 9 It’s the little things in life that can mean the most
April, aged 24, became one of our Young Ambassadors nearly two years ago having survived a grade four brain tumour. We caught up with her to hear why research breakthroughs mean so much to her.
Please tell us a little about your story for Bandanas for Brain Tumours Day every After visiting 11 different health March, it’s always great fun. I’ll #WearItOut professionals and complaining of intense with style this year! headaches, nausea and a loss of balance, I was finally diagnosed at the age of 19 What are your top tips for those with a grade four medulloblastoma. I was put looking to raise more funds for on a new treatment plan and consequently research? survived my brain tumour with very few Aside from the usual fundraising efforts, a side effects. great way to make a long-term commitment is to remember The Charity in your Will. What do you hope to achieve from A lot of people think you have to leave being a Young Ambassador? a large amount but this isn’t true. As little Being a Young Ambassador means that as 1% of your Will, after your loved ones I can turn an isolating and negative have been looked after, could make a world experience in to a fulfilling one. Brain of difference to people like me who rely tumours are underfunded, under researched on research breakthroughs as it’s the little and under acknowledged, I seek to change things in life that can mean the most! this through sharing my story, raising awareness and encouraging people What are the little things in life to help fund further research. that mean the most to you? Experiencing the seasons changing What have been the highlights? and treasuring moments such as laughing Visiting the Houses of Parliament and so much it hurts! speaking to MPs about why more investment into brain tumour research is needed was For more information on leaving a real highlight for me. I do all I can to raise a gift in your Will, visit awareness of The Charity and #WearItOut thebraintumourcharity.org/gift-in-will
10 The Grey Matters Issue 11 Off-patent Drugs Bill blocked at House of Commons
The Off-patent Drugs Bill was blocked at its second reading in the House of Commons in November despite support from MPs of both parties, health organisations and a number of charities including us.
The intention behind the Bill was to improve access to off-patent drugs. This is a problem across many disease areas – by the time a secondary use for a drug has been found (it has been ‘repurposed’), its patent has often Utilising expired meaning that there is no financial incentive for existing drugs a pharmaceutical company to seek a new licence for it. Patients aren’t therefore able to get easy access to drugs for treatment of that have been proven to treat their illness. brain tumours
As part of our strategy to double survival and halve the We fund Professor harm that brain tumours have on the quality of life, we Salomoni at UCL, are working to ensure everyone has the same access who has found that to high quality treatment. The Bill would have helped hydroxychloroquine, address a barrier to treatment, putting the responsibility a drug licensed to treat on the Government to seek licences for off-patent drugs. malaria, could have the Supporting access to cost-effective and readily available potential to control the treatments in this way would impact across many other migration and invasion disease areas too, including breast cancer, Parkinson’s of cancer stem cells. If disease and Alzheimer’s. it is proved successful in the treatment of Following the blocking of the Bill, the Government has brain tumours, we committed to meet with organisations and see if there will be relying on the are non-legislative means of achieving the aims of this Government’s support to Bill. We will continue to advocate for better access to seek a licence for this use, repurposed drugs for people with a brain tumour and to so that the people who build on the momentum and awareness of this campaign. need it most can have access to it. We’d like to thank all of our supporters and their MPs who backed the Bill.
The Grey Matters Issue 11 11 Children and families survey
We’ve heard that those affected by A full report of our findings will be available a brain tumour, regardless of the grade, from June 2016. As we have done with can have poor experiences of healthcare the Losing Myself report, we will use the and often live with far reaching and life findings from the children, young people altering side effects of both the tumour and families report to educate healthcare and the treatment. Because national professionals, influence policy makers and surveys, such as the National Cancer to tailor our services to improve the lives Patient Experience Survey, only consider of those affected every day. adults with a high grade tumour however, we don’t have the qualitative evidence we need to back this up and act upon it.
It’s for this reason that last year we launched our Losing Myself: The Reality of Life with a Brain Tumour report, the most comprehensive study of its kind globally, focusing on what life is really like for adults living with a brain tumour in the UK.
We’re now working to widen our understanding of what life is like for children and young people living with this disease. We also want to find out how a brain tumour diagnosis and its long-term effects can impact on their families.
To gather this information, we launched Losing Myself and its companion a comprehensive survey last November report for policy makers Finding which was completed by children, young Myself in your Hands, can both be adults and family members who provided viewed at thebraintumourcharity.org/ us with an in-depth insight into how living losing-myself with a brain tumour or with someone who has a brain tumour has affected their day-to-day life.
12 The Grey Matters Issue 11 Driving change through policy
The interim report of the Accelerated Access Review, a UK Government review looking at ways to speed up patient access to new drugs, was published last October.
Along with other charities and industry groups, we have been contributing to the Getting our review by providing feedback about the voices heard barriers that exist to accessing new medicines. On 9 December we hosted the All Party The interim report outlines five themes that Parliamentary Group (APPG) on brain have arisen from the initial consultation tumours at the Houses of Parliament. process and how they may work in practice. Supporters, their MPs and clinicians attended Of these, we particularly welcome the report’s to hear a talk from Emma Greenwood, intent to move towards a system of ‘managed a member of the secretariat of the access’ for promising new medicines, meaning Independent Cancer Taskforce, on the that drugs lacking the evidence base to be new five year English cancer strategy. funded by the NHS would be made available to We also heard from Dr Ahmadur Rahman, patients for a fixed period of time, whilst more a clinical oncologist, who spoke about the evidence is collected. Additionally, the review importance of capturing patient experience commits to building on existing initiatives like and the challenges of setting up research. the Adaptive Pathways Pilot, which explores Ambassadors April Watkins and Gala Rowley how to improve access to medicines for reflected on their own experiences and hopes disease areas where there is unmet need and for what the strategy might achieve. a lack of available treatment options. The APPG meetings are a great opportunity Ahead of the final report this April, we will for us and our supporters to get their voices continue to engage with the Accelerated heard by key decision makers in Government Access Review as it develops its proposals and the NHS. If you’d like to register to attend for speeding up access to new medicines our next APPG, visit and technologies. thebraintumourcharity.org/campaign-with-us
The Grey Matters Issue 11 13 HeadSmart news
Maisy’s story
Optometrist Martin Baker recognised the signs of a brain tumour when Maisy, aged nine, came in for a routine eye test with her mother Dawn in April last year. He sent Maisy straight to the emergency eye clinic and within 48 hours, she’d had an operation to remove a very large tumour. Doctors think it could have been growing for over two years.
Maisy had been experiencing headaches and had vomited occasionally, she had been referred to her local ophthalmology department for further tests. If Dawn or her GP had seen a HeadSmart card, her symptoms HeadSmart may have been linked sooner. cards in Dawn said, “I didn’t know what the symptoms meant. If someone had told me about the implications of them, Welsh perhaps it could have been caught earlier. We are just very lucky and can’t thank Martin enough.” Thanks to your support in helping us spread the Sarah Mee, our Head of Policy and Campaigns said, word about HeadSmart, “Maisy’s story demonstrates the important role opticians we’ve now been able to can play in the diagnosis of brain tumours. Early diagnosis translate the symptom can make a significant difference to the type of treatment cards into Welsh. If a child needs and the lasting impact it can have on his you would like Welsh or her quality of life.” HeadSmart materials for your school, please contact: Maisy is doing well and is back at school and both [email protected] Martin and Dawn are now championing HeadSmart.
Know the symptoms on-the-go Text SMART to 81400 for your free mobile symptoms guide.
14 The Grey Matters Issue 11 The next step for HeadSmart HeadSmart’s leading clinician, Professor David Walker, has published an academic paper in Neuro-Oncology which details the success of the campaign in its first two years. Neuro-Oncology is the leading journal in the brain tumour Amelia, Pride of Britain research field and this will help generate greater awareness of “Amelia, we think you are HeadSmart amongst healthcare probably the bravest person professionals across the world. we have ever met.” Professor David Walker said, Simon Cowell spoke for all of The “This strategy, to speed up the X Factor judges when he presented diagnosis of brain tumours, by the our 10-year-old supporter Amelia NHS using an awareness campaign with a Pride of Britain Award for her to educate both the public and fundraising achievements. healthcare professionals is a world- first in paediatric cancer. Amelia lost her dad Peter to a brain tumour in February 2015. He was “As a result, the campaign is now diagnosed with the disease in January being emulated internationally 2014, shortly after her younger brother and has been acknowledged Josh was told he had a life-threatening by a number of NHS and charity condition called Arteriovenous awards of excellence.” Malformation – a tangle of blood vessels 54% of paediatricians now in his brain which puts him at risk of say they feel more confident having a stroke. about diagnosing brain tumours Since then, Amelia has raised over compared to a previous 32%. £25,000 for charities including us. Following the success of HeadSmart, a campaign to Her incredible efforts earned her the reduce diagnosis times for adults award of Lidl Young Fundraiser of the Year is planned. We’re funding the at The Mirror’s Pride of Britain Awards research behind this, which will last October. take place at the University of Congratulations Amelia – and huge thanks Edinburgh and the University to you and all of our amazing fundraisers. of Cambridge.
The Grey Matters Issue 11 15 My personal Everest
Jose has a grade two brain tumour. “My wonderful Oncologist nurses Kim and Along with his friends, family, nurses Tricia from Queens Hospital said they were and Support Group, he joined us for The doing the walk with their team and families, Twilight Walk in Windsor where he made so Bridgette and I, along with friends from the momentous decision to push, rather our Romford Support Group joined them. than sit in, a wheelchair. He completed A wheelchair was arranged for me to sit the whole 10km. in and my friend Eddie kindly volunteered to push me. The Romford Support Group Jose was diagnosed with a brain tumour is mine and Bridgette’s deepest passion, in February 2009 after an emergency trip we have made the greatest friendships to A&E. there but also recently lost some of them to brain tumours.” “Overnight, mine and my family’s lives were turned upside down. I was told that Once at the walk, Jose made the decision a tumour was situated on the main artery to push his wheelchair in memory of the of the brain but it would be too risky to try friends that he has lost, and the friends and remove it, all that could be done was who are still with him on the journey. to monitor the tumour.” “Although there were many times In 2011 the tumour began growing. throughout that long night that I thought A biopsy confirmed that Jose had a grade about giving up, I knew if I did so then it two astrocytoma and he endured six will be easy to give up in the future when weeks of radiotherapy from which he the road ahead gets tough. The amazing suffered severe side effects. He is still on support, clapping and cheering from medication today to prevent seizures and the entire team at The Twilight Walk as cluster headaches and finds it hard to walk we stepped over the finish line with the anything but a short distance. wheelchair was incredible, the spirit and atmosphere was utterly overwhelming Jose and his wife, Bridgette, had never and a moment that will stay with me and attempted The Twilight Walk before but my group for the rest of our lives.” when they found out that his nurses were walking, they made the decision to join Image (bottom right): Jose (on the far right) them too. raising funds for The Brain Tumour Charity.
Every day 27 people are diagnosed with a brain tumour in the UK
16 The Grey Matters Issue 11 “People are now asking me what’s next. I’m happy to steer clear of any more 10km walks, but Bridgette and I will both #WearItOut with strength this Bandanas for Brain Tumours Day. One step at a time, we are fighting this disease together.”
The Grey Matters Issue 11 17 Carers’ Facebook Support Group
Our Carers’ Facebook Support Group provides a safe online space where people who are supporting and caring for those diagnosed with a brain tumour, and their friends and family, can connect with each other, share experiences and find and give support.
“Throughout all of this family and friends were great, pulling together, being supportive and fundraising for The Charity. They’re already planning to #WearItOut for this year’s Bandanas for Brain Tumours Day! Debbie is also a member of The Charity’s Facebook Support Group and finds it helpful to have the support of others with a brain tumour.
“I found the postings on the group from those with brain tumours interesting, but Neil Wilkie is a member of the Carer’s I wasn’t one of them. I needed somewhere Facebook Support Group: that I could offload my pain and worries, confidentially, in a way that Debbie couldn’t “I’ve been married to Debbie for two years, see. I needed somewhere I could get help, 18 months ago she was diagnosed with support and ideas from people that were Percy - a grade four glioblastoma (GBM). in a similar position to me. Hearing the doctor say the words ‘incurable’ and ‘14 months’ was a surreal experience. “The Carers’ Facebook Support Group provides me with this and I hope many “Debbie had ‘successful’ surgery and more benefit from it.” waved goodbye to Percy. Radiotherapy and chemotherapy followed with difficult Find out about Facebook Support Groups: side effects. thebraintumourcharity.org/facebookgroups
18 The Grey Matters Issue 11 The Research Involvement Network
The Research Involvement Network those affected by brain tumours such offers researchers and people affected as Amy McLaughlan, with researchers by brain tumours the opportunity to Stuart Smith and Ruman Rahman. collaborate in shaping the future of brain By involving people throughout this tumour research. Since we launched the research journey we know we can help Research Involvement Network earlier make research as relevant and effective this year, we have helped bring together as possible.
Stuart Smith and Amy McLaughlan
Ruman Rahman Amy joined the Research Involvement Network in September 2015 after her Stuart Smith and Ruman Rahman work father sadly passed away from a brain together at The University of Nottingham. tumour earlier in the year. Their latest research proposal to study the genetic characteristics of the most “Being involved in the network I feel like infiltrative glioblastoma cells was put I’m able to make some sort of positive to our Research Involvement Network. contribution – I’m quite good at working out how things may come across to other “For such a devastating disease, bringing people so being able to check the lay together a network is a difficult task. The summaries is a valuable contribution I can feedback we have received is extremely make. I also run a Supporter Group called useful. There is much opportunity for us The Small but Mighty Fund and although to refine and focus our research question fundraising is massively rewarding, being and description of work on this feedback.” able to get a ‘behind the scenes’ look at Stuart and Ruman plan to submit their research is hugely interesting to me. I feel proposal in January. like surely one day, one of these studies that I have made a tiny contribution to, will “We will continue engagement be the breakthrough we’re all waiting on.” with this network pre and post future grant awards, the feedback For further information and to get is invaluable.” involved, visit thebraintumourcharity.org/ researchinvolvementnetwork
The Grey Matters Issue 11 19 Our information services
Our aim is to produce relevant, useful have abundant free time. Checking fact information that helps improve life today sheets is something I can do on my lunch for those affected by a brain tumour, break and fit around other things. It also a key part of halving the harm caused makes use of my nit-picking skills! I’m by this disease. pretty literate and have an eye for detail so will pick up on grammar aspects or Underpinning all of our support services typos, but most importantly I can read is the information that The Charity the fact sheets from a lay person’s point provides, which is made possible thanks of view. They aim to convey often quite to your donations. Our Support and complex information in a comprehensible Information Team have over 40 fact sheets way without dumbing it down. on offer in addition to a wide range of information on various subjects relating “Reading fact sheets has enabled me to brain tumours, with more in the pipeline. to learn about many aspects of brain Last year, our online fact sheets were tumours and the work of The Charity viewed over 86,000 times. which I find really interesting. It’s my way of contributing to a cause I believe in, and Nancy Jenkins is a member of our lay panel: help improve the lives of those living with “I’m keen to support The Charity, but don’t this disease.”
How can brain tumours Informing the DVLA or DVA Travelling locally and for What is a clinical trial? What is memory? Who is a carer? affect communication? It is a legal requirement to inform the DVLA as soon as possible Communication Driving and medical appointments A carer is anybody who, usually unpaid, looks after a family if youTravelling have been diagnosed with and a brain tumour. In Northern Clinical trials A clinical trial is an experiment that involves patients in a new MemoryCarers is one of our cognitive (mental) functions. It is our It is important to realise that not everyone with a brain tumour Memory problems member, partner or friend who needs help because of their Ireland you must tell the DVA. Driving way of managing a condition. This might include investigating a ability to take in and store information, as well as to recall it. difficulties and brainwill experience tumours communication difficulties, or they may be so - illness, frailty or disability. Carers come from all walks of life, all new treatment, a new way of giving an existing treatment, or a When information goes in tolooking our memory, this is known as If youbrainSurgery are allowed can also totumours continue cause communication to drive, or when/if difficulties you get if yourthe area AfterEmail: being diagnosed with a brain tumour, it is very common to after yourself mild that they do not greatly affect daily life. The pleasepurpose see links of onclinical the following trials web for page: brain tumour andTransportnew approach brain provided to diagnosing by voluntarytumours an illness organisations or assessing an outcome cultures and can be of any age. swimming or going for a brisk walk has been shown to be a of the brain operated on is involved in communication. be asked to give up your driving licence. This may be temporary, ‘encoding’.Phase Recalling 2 information is known as ‘retrieval’. licence back, you must also tell them if your condition worsens gov.uk/contact Some voluntary organisations offer a driving scheme provided Episodic memory brain tumours Whether and how a brain tumour affects your communication orPost: youpatients may not is be to able advance to legally understandingdrive again, ( of after treatment. Trials are vital to establish whether a new Not all treatments tested in phase 1 make it to phase 2. Phase 1 It may be that you do not consider yourself to be a ’carer’ great stress reliever. If you have been diagnosed with a brain and about any medication or treatments you are having that Although we do not yet fully understand exactly how memory Episodic memory is the memory of specific events or If youIf these have, difficulties or have are had,adue to the brain natural tumour swelling yourthat occurs Drivers Medical-the Group, DVLA, Swansea SA99 1TU byapproach volunteer is better drivers. than They the may old one be able to help you with skills will depend on where it is in the brain. informationWeb: see the driving and-dvla brain tumours fact sheet If you have a brain tumour or have received tells the clinical researchers what dose of the new treatment you are doing is just part of your relationship with the person you Or do something that allows you to relax e.g. reading, listening tumour, you are required by law to inform couldafter affect surgery, your driving. the effects may be temporary. tumours and to improve diagnosis and works,If you we givedo know unpaid that it involvessupport many to differenta member parts of of the experiences (for example a family member’s birthday or diagnosis may affect your ability to travel. gov.uk/dvla transportationin persisting with to it.medical appointments or support groups. should be given using a relatively small number of people. are looking after and ‘only what anyone else would do in that Communication allows us to tell people about Each section or lobe of the brain ( treatment for a brain tumour, it is possible brain and that it is not just one process, but several. As scientists remembering where you were when you heard particular to music, relaxing in a hot bath or catching up on sleep. Find the DVLA (Driver & Vehicle Licensing Agency) You can be fined up to £1000 if you do not tell the DVLA/DVA, Bluetreatment. Badgegov.uk/driving scheme Some-medical trials also seek to better You can check with your local council about any such schemes your family or to a friend, who could not ThisHowever, can be if some for various of the tumour reasons, remains including causing pressure -enquiries situation’. something that allows you to switch off the thoughts that may responsible for different functions, some of which are involved gov.uk/brain for further available to you. - if it isn’t, there is little point believeIn that phase there 2, the is not aim one is to single find placeout morein the about brain the where safety and news stories such as the death of Diana Princess of Wales ourselves and how we feel. It plays a large or, in Northern Ireland, the DVA (Driver & and youon the may brain, be prosecuted or some of if the you brain are involved tissue involved in an accident in as If youcontrol have severe symptoms mobility-medical issues,and improve you or your quality carer may of be life that you could experience memory difficulties. manage without your help, you are a carer. in communication. limitations related to treatments and -conditions Developing a new treatment memories are stored, it is not possible to predict how a person’s or 9/11). - what be constantly whirring through your head. a result of your tumour affecting your ability to drive. To inform the DVA (Northern-tumour Ireland), you must send both some initial evidence about whether the new treatment does However, if you are involved in looking after someone with a part in our independence in our personal and Vehicle Agency). see diagram below communication skills has been removed, the effects may entitledfor those to a ‘Blue living Badge’ with under- anda thetumour. government’s ‘Blue Badge). Memory difficulties could be because of the medications, the effects of the tumour parts of your licence, along with a covering-driving letter giving details Help with travel costs for medical appointments memoryCaringwhat will can is be hoped affected have (referred abased huge toon as whereeffect its ‘efficacy’): their on brain you tumourand is. brainMemory tumour, can also you be are divided classed into: as a carer and all carers share some The important thing is to create some ‘you’ time and protect it. For example, the frontal lobe is involved in language production be more permanent. scheme’. This allows you, or the person who is driving you, to There are normally four phases to developing a new treatment. professional lives. It is an essential part of who ) is When you contact the DVLA/DVA, it is a good idea to voluntarily of your condition, to: tumourIn addition itself to orthe mayabove, be you a may result be entitled of surgery to financial basic needs. One of these is the need to make sure you look after It andis very the temporal common lobe tois involved be asked in understanding to give up language. your itself and the cost of travel insurance. parkBy near their to where definition, you need clinical to go. Blue trials badges are are given by Clinical trials can therefore be a lengthy process. your life. surrender (give up) your licence and send it to them at the same help with costs incurred for travelling to and from hospital Is it any good? yourself. Visual memory Also allow yourself a treat from time to time without feeling we are as human beings. yourDVA local Drivers council Medical following Section a disability assessment. For more or treatment such as chemotherapy or Types of memory driving licence. This may be temporary, but time. If you do not, they could revoke (take away) your licence, experimental, and while the hope is that they The phases are as follows: Does it shrink the tumour? guilty - As a result, if your tumour is in one of these lobes, the pressure What communication difficulties appointments and parking charges. This usually involves It is often forgotten that you can only care Memories that have been created visually (for example In addition to this, you will be making more Tel:information about the scheme, visit: radiotherapy. The effects on memory differ going out for a meal, buying some new clothes, watching The ability to communicate is something we the tumour is causing on that part of your brain, may affect your which may feel more distressing. will be beneficial, there is no guarantee. being able to claim back costs, rather than receiving up front Short term memory (known as(also ‘response’ known as to ‘working the treatment) memory’) memory of people’s faces). sport, going to the pub or simply visiting friends or family. some people unfortunately will not be able to www.gov.uk/blue0300 200 7861 Phase 1 well if you care for yourself. journeysmight for someone medical appointments with a brain if you tumour have (Northern Ireland) in both symptoms and severity from person Does it keep the tumour away for longer? What can carers do to look after often take for granted. When communication communication skills. Monday to Friday 09:00 payment. You will need to pay on each occasion and then claim This type of memory is used when we remember things from If your loved one’s care needs are such that they cannot be left drive legally again. This will depend on your In addition, having your licence revoked can make the process of (medical enquiries and appeals) Phase 1 sets out to answer the question of whether the Verbal memory a brain tumour, which can be very costly. Please note that a Blue-badge Badge does not give you free parking at to personback the money.and not everyone who has a brain just a few seconds (known ago, as for‘progression example the free name survival’). of a person we difficulties occur, they can make us feel gettingexperience? your licence back more complicated. Gaining permission Saturday 08:00 -scheme treatment is safe and, if so, what is the right dose regime to use. Of course, each carer’s experience is unique to themselves?Memories that have been created through words and alone, perhaps a friend or relative would be able to stay with type of tumour and the treatment you have. allEmail: hospitals. It is worth asking staff at your hospital whether Does it make the patient feel better? [email protected] -17:00-information tumour will experience memory problems. have just met or a passcode to a door. Short term memory lasts them for a couple of hours. Or enquire with your local council fromThis the fact DVLA/DVA sheet toaims drive to again give takes an longer overview and is more of Post: - 13:00 You(The must dose meet regime, certain or dosage criteria regimen, to qualify means for the such amount assistance, of the their own circumstances. This fact sheet Carerssounds say the (for following example hearingthings have a song most and helped remembering them to cope: frustrated, angry, embarrassed and isolated If you have a brain tumour, you may experience a range of they offer this. In addition to this, conditions for the-council Blue Badge for approximatelyIs the treatment 20 seconds safe and and can well be converted into long There are a variety of services and practical difficult if your licence has been revoked rather than voluntarily Drivers Medical Section, DVA, Castlerock Road, Memorythesedrug to include: difficultiesuse, how often can to give have it and a over huge how impact long.) Drugs are a particular place associated with that song). about whether your loved one can attend a day centre. different communication difficulties. These include: contains some practical suggestions that have from the world. some of the options and help available to schemeWaterside, in Westminster, Coleraine Kensington BT51 3TB & Chelsea, Camden and the term memory.This phase uses a larger group of patients (up to about 100) and Alternatively you may have a local carer’s centre that offers this schemes that may help overcome the loss of surrendered. Web: tested in the laboratory before being given to people. Usually, breaks in caring you if you have or have had a brain tumour. City of London differ from concessions in the rest of the country. on yourYour quality weekly incomeof life being and sufficiently relationships. low. beencan shared last for a couplewith usof years. by carers, If the -techniquetolerated? which looks they promising nidirect.gov.uk/index/information but not always, they are tested on animals. If it seems that they practical support service. Understanding communication difficulties independence that some people feel. To informLanguage the DVLA impairment (England, Wales, (also known Scotland) as about your Being in receipt of Income Support. Long term memory How does a brain tumour (Please see the Resources section later in this fact sheet.) driver Thiscould fact help sheet people aims with tobrain outline tumours, some a ‘phase of 1’ the (safety) study haveafter found phase helpful 2, then it andwill proceed may be to phase of use 3. to you. -licensing/telling carer’s assessment and knowledge of coping strategies can help diagnosis of a brain tumour, you will need to fill in a Form B1. TheyPublic will transport then send you the appropriate medical questionnaire Being in receipt of income Long term memory stores and allows you to recall information Longer breaks Includes difficulties understanding language and memorymust be difficulties done. Often a associated very low dosage with is given brain to the first few affect memory? This is available online at: If you have a disability or severe-dva mobility issues,-and you may be Support Allowance. from thePhase past, 3 whether this is a minute ago, a year ago or many financial support Sometimes you may feel you need a longer break people affected by a brain tumour (and those to gain more details about your condition.-about It also-services/motoring/ includes a patients. If there are no side producing language, as well as with reading‘dysphasia and writing -a tumours and to provide some practical Phase 3 looks at whether the new treatment works better than and there, a few days break or a holiday of a week or two In this fact sheet: online sectionentitled for to youreduced to give costs permission when using for the public DVA -transport.condition.htm to contact To your find For more information and a full list-related of eligibility Employment criteria, andplease decades ago. These memories can include facts that you learnt Due emotionalto its complex support nature, memory can be affected in many around them) to feel more able to cope and -confidential To ’) make sure that thegroup of patients information is given a slightly higher dose, and so on until the existing,we ‘standard’ produce treatment or, sometimes, whether it DVLA forSpeech a paper difficulties copy. gov.uk/government/publications/b1 out more about this and whether you meet the eligibility criteria, suggestions for ways of coping with these. at school, memories a family holiday from your childhood or different ways and at different levels of severity. Damage in over time, a combination of these. - doctor(s), if required. visit the NHS Choices website: information about where to get the above support . Informing the DVLA or DVA medical side-effects are experienced that-effects indicate amongst it would this be group, unsafe the to next produces fewer side so reduce these feelings. -information please visit: www.nhs.uk/NHSEngland/Healthcosts/Pages/ memories of your wedding day. the brain can be confined to one area (‘focal’) or widely spread When InyouCognitive thisinform fact the communication DVLA sheet: about your difficulties diagnosis, using Form B1, increase the dosage any further. This is known as the ‘maximum In this fact sheet: This does not necessarily mean going away yourself.- It could be How long will I be unable to drive? (Please see contactor you information can contact below). the www.gov.uk/transport groups of patients with similar characteristics. Some of the (‘diffuse’). Your tumour type and treatment can affect how a day here Travelcosts.aspx -effects. This is done by comparing two Breaks in caring that the person you are caring for goes on holiday and you stay you will be asked to include the following information: - How long will I be unable to drive? tolerated dose’ or MTD and is the last dose where there were Long termpatients memory receive can thebe furtherstandard divided treatment in to andthree some sub receive the How do I get my licence back? In this fact sheet: widespread the damage is and therefore the impact on your - In this fact sheet: TravellingProblems locally with cognitive and for functions, medical such as memory, If you are disabled and live in London, you may be eligible for free Youlittle will or no need side proof of costs (e.g. bus ticket receipts) to be able Who is a carer? home. This will give them new experiences, a change of scene or, Your full name, date of birth and driver -disabled In this fact sheet: new treatment. The outcome of the two groups is compared to Thismemory. can mean Memory anything problems from can daily include breaks loss of ofan memory hour or two,for Questions if I get my licence back attention, social cognition, can lead to communicationis clear, travelThe length on public of time transportaccurate, that you in will London be unable via a toscheme drive dependscalled ‘The on: balanced,to claim back your costs, as well as proof of eligibility. evidence-based Procedural memory and and routine and a chance to mix with other people, whilst you appointments What is a clinical trial? -effects. seeWhat whether can the carers new treatment do to look is afterbetter. themselves? through weekly breaks of a few hours, to a short weekend break Having a car adapted Name and contact details of your GP and consultant The MTD helps determine the dose for the next studies. Procedural memory is a type of memory that allows us to events and information about your life before you had a brain How can brain tumours affect communication? Travellingdifficulties abroad due to andforgetting travel words, insurance losing the thread Freedom Pass’. For more information about this scheme and to If youWhat are caring is memory? for someone who is living with a brain tumour, get a well Type and grade of tumour and date of your diagnosis Type ofDeveloping your brain tumour a new treatment Sometimes a researcher is happy to stop before an MTD is Breaks in caring ortumour respite or breaks/holidays difficulties processing of one or new more information weeks. Or and it could be a -earned break. What communication difficulties might someone The brainWhat is also if I don divided into two hemispheres of a conversation, or not knowing when to talk and check your eligibility, see the London Councils Freedom Pass carryWhich out activitiestreatment without patients really receive thinking (standard about or themnew) (foris often companies ’s number Benefits and risks of taking part youreached, Typesmay beand of able sometimesmemory to receive a drug help iswith considered travel costs to be for safe travelling enough Practical and financial support -types: thereforecombination ability of these to form new memories and to learn. If you go away and need to arrange alternative care, then ’ Any treatmentwhen to you listen have during had, plus a conversation dates, and any planned website:Grade of your brain tumour exampledecided driving on a random or riding basis. a bike). That is, the treatment is allocated with a brain tumour experience? The side on which yourt get tumour my licence is located, back? as well as the lobe, to theHow hospital does they a brain are being tumour treated affect at through memory? the ‘Social Please note that this information is relevant to people holding a group 1 or possibleA list further of resources treatments about travelling and www.londoncouncils.gov.uk/services/freedompass/Answers to some common questions that to progress with the study at, or near, the maximum treatment by chanceEmotional support depending on how much care your loved one needs, friends or can affect the type and likelihood of communication effects. Where the tumour is within your brain Daily breaks - whatever works best for you. Emotional aspects of communication difficulties licence (for cars and motorcycles). Rules relating to group 2 licences (large (For more information on cognitive effects, pleaseup-to-date, see the all of theFund’.dose. Answers Phase Eligibility 1 totrialsmaterial criteria some tend apply,common to be including carried questions out low in income specialised you or clinical produced Semantic memory– by the family may be able to take over. For furtherrelated information, issues contact: that you may find helpful Taxicard foryou London may have about clinical trials. patientResources can influencelike for tossing carers this a coin.decision. Neither It is the researchermost successful nor the way Many carers feel- guilty if they take time out for themselves, but Cognition and brain tumours fact sheet.) Type of treatment you have received and when it was receiving income Semantic memory is a type of memory that gives us general Types of memorymake time for yourselfproblems How to help communication lorriesFor and example, buses) differ. if your You tumour can find is out located more about in the group left hemisphere,2 -licences left and from right. you researchmay have units aboutrather thanmemory local problems.hospitals and can last several The most common communication difficulty experienced by If youcompleted live in a London borough, have serious mobility issues and of ensuringPost that the results of the trial are not biased and a true you are important too, and need to be cared for as well. It is Or your local council will have a social services department that theare DVLA more /DVA likely to experience language and speech difficulties, as DVLA Drivers Medical Enquiries informationmonths. Patients about -will the receive Social Fund,optimum please care see and the attention NHS Choices while information-caring about the world we live in without being tied to difficulty using public transport, you may qualify for reduced taxi related job seekers allowance. For more comparison has been done. importantMemory problems to have some are sometimes time for yourself, referred even to as if ‘amnesia’. only for an hour can arrange for help - their contact details are given in this fact sheet. people with brain tumours is dysphasia. website: a specific instance or context that we learnt it (for example, this is where the language areas are generally found. Tel: (Brain tumours are graded in the unit. As well as safety, investigations may be undertaken There are different types of amnesia: 0300 790 6806 fares. Further information about the London Taxicard scheme is www.nhs.uk/CarersDirect/moneyandlegal/ or two each day. Having some time out can actually make you need to have an assessment of needs and may have to pay for Sometimes the term such as the speed at which they grow and how likely they are to socialfund/Pages/Overview.aspxto see how the drug is handled in the body and if the drug might beingIn addition, able to name a technique capital calledcities or‘blinding’ knowing may the be names used. of In a - usually called ‘respite care’. (You will (It is important to note that for some people, the language areas Monday to Friday 08:00 (England, Wales, Scotland)teamavailable at is certified by The Information Standard. more effective. the respite care). from ‘single blind’ trial the researcher, but not the patient, will know correct term is (medical enquiries and appeals) spread. Grades 1 and 2 are low 1 be useful. If the drug is safe, it will be progressed to phase 2. different dog breeds). Retrograde amnesia are found in the right hemisphere.) www.londoncouncils.gov.uk/services/taxicard- 4 according to their behaviour, The benefits enquiry line will also be able to give general in this fact sheet.) Saturday 08:00 - ‘aphasia referred to as benign. Grades 3 and 4 are high which treatment they are receiving. In a ‘double blind’ trial Do something you enjoy that is not directly related to helping the (Please see the Carer’s assessment section later lack of language,‘ whereas dysphasia means problems information about support available to disabled people and Retrograde amnesia describes loss of memory of the time dysphasia’. -17:30’ is used, even though the more 13:00 and often referred to as malignant-grade, or cancerous. slow (For more neither the patient nor the researcher knows the treatment person you are caring for. Physical activity e.g. gardening, Alternatively you may wish to employ a paid care worker in with language). (Aphasia really means the complete their carers. You can call them on: leading up to a brain injury. This may therefore include loss information, see our -growing and sometimes allocation. Again, this technique improves the validity your home or pay for short them at: of memories from before you had a brain tumour or before Bel (certainty) of the results of the trial. So any effects seen can be Our Information‘ -grade, fast Standard-Customer process ensures thatyou had treatment. What is a brain tumour? more confidently attributed to the treatments themselves and -growing [email protected] 882 200 -term residential care. ’ fact sheet). or email not to other factors, such as placebo effects.
each piece of information bearing the Information
Continued overleaf > Continued overleaf > Continued overleaf > Continued overleaf > Continued overleaf > Continued overleaf >
Standard quality mark has undergone a rigorous production process and careful assessment.
20 The Grey Matters Issue 11 The steps to providing information:
We identify the need for information on topics such as specific tumour types or getting your affairs in order, from our community of users and research like our Losing Myself report.
Our Support and Information Team undertake rigorous research, using reliable and credible sources such as academic journals, government websites and expert advice.
A draft is written, checked by The Charity Team and then sent out for review by an expert panel. The panel varies depending on the topic but is made up of professionals from a particular field who can confirm that the information provided is accurate, relevant and reliable.
A lay panel will then check that the information is clear, easy to understand and accessible to the general public.
What is memory? Who is a carer? A carer is anybody who, usually unpaid, looks after a family MemoryCarers is one of our cognitive (mental) functions. It is our Memory problems member, partner or friend who needs help because of their ability to take in and store information, as well as to recall it. - illness, frailty or disability. Carers come from all walks of life, all When information goes in tolooking our memory, this is known as after yourself cultures and can be of any age. and brain tumours ‘encoding’. Recalling information is known as ‘retrieval’. swimming or going for a brisk walk has been shown to be a Episodic memory It may be that you do not consider yourself to be a ’carer’ great stress reliever. Although we do not yet fully understand exactly how memory Episodic memory is the memory of specific events or you are doing is just part of your relationship with the person you If you have a brain tumour or have received works,If you we givedo know unpaid that it involvessupport many to differenta member parts of of the experiences (for example a family member’s birthday or Or do something that allows you to relax e.g. reading, listening are looking after and ‘only what anyone else would do in that treatment for a brain tumour, it is possible brainyour and family that it is or not to just a onefriend, process, who but could several. not As scientists remembering where you were when you heard particular to music, relaxing in a hot bath or catching up on sleep. Find Once feedback has been collected from both panels situation’. believe that there is not one single place in the brain where news stories such as the death of Diana Princess of Wales something that allows you to switch off the thoughts that may that you could experience memory difficulties. manage without your help, you are a carer. memories are stored, it is not possible to predict how a person’s However,or 9/11). if you are involved in looking after someone with a- what be constantly whirring through your head. Memory difficulties could be because of the memoryCaring will can be affected have abased huge on whereeffect their on brain you tumourand is. brainMemory tumour, can also you be are divided classed into: as a carer and all carers share some The important thing is to create some ‘you’ time and protect it. tumour itself or may be a result of surgery basic needs. One of these is the need to make sure you look after your life. and final changes have been made, the information or treatment such as chemotherapy or yourself.Visual memory Also allow yourself a treat from time to time without feeling Types of memory guilty - radiotherapy. The effects on memory differ It is often forgotten that you can only care Memories that have been created visually (for example going out for a meal, buying some new clothes, watching Short term memory (also known as ‘working memory’) memory of people’s faces). sport, going to the pub or simply visiting friends or family. well if you care for yourself. What can carers do to look after in both symptoms and severity from person This type of memory is used when we remember things from Verbal memory If your loved one’s care needs are such that they cannot be left to person and not everyone who has a brain justOf a fewcourse, seconds each ago, forcarer’s example experience the name of a is person unique we to themselves? alone, perhaps a friend or relative would be able to stay with will be critiqued and proof-read once again, before Memories that have been created through words and have just met or a passcode to a door. Short term memory lasts tumour will experience memory problems. their own circumstances. This fact sheet sounds (for example hearing a song and remembering them for a couple of hours. Or enquire with your local council for approximately 20 seconds and can be converted into long Carers say the following things have most helped them to cope: Memory difficulties can have a huge impact a particular place associated with that song). about whether your loved one can attend a day centre. termcontains memory. some practical suggestions that have breaks in caring Alternatively you may have a local carer’s centre that offers this on your quality of life and relationships. been shared with us by carers, which they practical support service. Long term memory How does a brain tumour (Please see the Resources section later in this fact sheet.) being made available for use. This fact sheet aims to outline some of the have found helpful and may be of use to you. Long term memory stores and allows you to recall information carer’s assessment Longer breaks memory difficulties associated with brain affect memory? from the past, whether this is a minute ago, a year ago or many financial support Sometimes you may feel you need a longer break tumours and to provide some practical decades ago. These memories can include facts that you learnt emotional support and there, a few days break or a holiday of a week or two Due to its complex nature, memory can be affected in many suggestions for ways of coping with these. at school, memories a family holiday from your childhood or different ways and at different levels of severity. Damage in over time, a combination of these. information about where to get the above support . memories of your wedding day. the brain can be confined to one area (‘focal’) or widely spread In this fact sheet: This does not necessarily mean going away yourself.- It could be (‘diffuse’). Your tumour type and treatment can affect how a day here Long term memory can be further divided in to three sub Breaks in caring that the person you are caring for goes on holiday and you stay widespread the damage is and therefore the impact on your Who is a carer? home. This will give them new experiences, a change of scene- or, In this fact sheet: Thismemory. can mean Memory anything problems from can daily include breaks loss of ofan memory hour or two,for Procedural memory and routine and a chance to mix with other people, whilst you What can carers do to look after themselves? eventsthrough and weekly information breaks of about a few your hours, life to before a short you weekend had a brain break What is memory? Procedural memory is a type of memory that allows us to get a well Breaks in caring ortumour respite or breaks/holidays difficulties processing of one or new more information weeks. Or and it could be a - carry out activities without really thinking about them (for earned break. Types of memory -types: combination of these Practical and financial support therefore ability to form new memories and to learn. If you go away and need to arrange alternative care, then example driving or riding a bike). How does a brain tumour affect memory? Emotional support depending on how much care your loved one needs, friends or Daily breaks - Answers to some common questions you Semantic memory whatever works best for you. family may be able to take over. Resources for carers Many carers feel- guilty if they take time out for themselves, but Semantic memory is a type of memory that gives us general Types of memorymake time for yourselfproblems may have about memory problems. Post you are important too, and need to be cared for as well. It is Or your local council will have a social services department that information-caring about the world we live in without being tied to All fact sheets and information can be viewed on our
importantMemory problems to have some are sometimes time for yourself, referred even to as if ‘amnesia’. only for an hour can arrange for help a specific instance or context that we learnt it (for example, orThere two areeach different day. Having types some of amnesia: time out can actually make you need to have an assessment of needs and may have to pay for being able to name capital cities or knowing the names of - more effective. the respite care). usually called ‘respite care’. (You will different dog breeds). Retrograde amnesia in this fact sheet.) Do something you enjoy that is not directly related to helping the (Please see the Carer’s assessment section later Retrograde amnesia describes loss of memory of the time website at thebraintumourcharity.org/understanding- personleading you upare to caring a brain for. injury. Physical This activity may therefore e.g. gardening, include loss Alternatively you may wish to employ a paid care worker in of memories from before you had a brain tumour or before your home or pay for short you had treatment. -term residential care. brain-tumours
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The Grey Matters Issue 11 21 Information Days with Dr Catherine McBain
“My talk on the day centred around clinical trials of potential new brain tumour treatments. My colleagues’ talks focused on both the holistic and medical aspects of brain tumour care. They talked about neurosurgery, coping with treatments and we also had panel discussions with patients about the reality of being in a clinical trial.
“For us, it was very interesting to be able to meet The Brain Tumour Charity Team Dr Catherine McBain, a consultant clinical as well as chat to people who have been oncologist at The Christie in Manchester, affected in an informal setting. It’s always joined our Manchester Information Day helpful for people not only to be able with her team last year. Information to chat to us, but also to others who are Days allow attendees to hear in-depth in a similar situation. Being able to share presentations from leading experts stories and experiences is hugely important including neurosurgeons and specialist for anyone affected by a brain tumour. nurses, and to meet others affected by a brain tumour. “Patients’ feedback is vital to the successful running of events like this but I hope that “We’ve had links with The Brain Tumour these Information Days serve several Charity’s Support and Information Team purposes; to provide factual information for many years. Our team are always about treatment and clinical trials; to keen to attend events to inform patients introduce patients to information and and carers, to share developments in our support services and to meet other patients services and hopefully improvements and staff away from a hospital setting”. which will benefit patients, and that’s why we came along to the Manchester To watch Dr Catherine McBain’s full talk, Information Day. It was a really great visit: bit.ly/drcatherinemcbain day for all involved, both for healthcare For more details on upcoming professionals and patients. We find it Information Days visit: incredibly worthwhile and it is an initiative we are keen to support. thebraintumourcharity.org/infodays
22 The Grey Matters Issue 11 Getting Involved
Charity of the year
Many thanks to Lockton Companies LLP and Avaya who have both recently selected us as their charity of the year partner.
“The partnership means so much “I am delighted to hear that Avaya to me as I lost my brother to a brain will be supporting The Brain Tumour tumour in 2009. A number of my Charity as they have supported my colleagues have also been directly family so much. We will be holding affected by the disease and we are a netball tournament for Bandanas all looking forward to helping defeat for Brain Tumours Day – it will be brain tumours.” fantastic to get all the staff playing for a great cause” Henry Dyson, Lockton Companies LLP associate Steve Wright, Avaya, whose son Luke was diagnosed with a brain tumour after his mum spotted our HeadSmart campaign.
BGC Charity Day We would like to say We were also chosen by staff at Martin Brokers to a huge thank you to all be one of the charities supported by the BGC Charity of our corporate partners Day in September 2015, where all the revenue for one for their fantastic day is shared between dozens of charities worldwide. support. To get your Celebrity ambassadors including Jimmy Carr, Lewis company involved, please Moody, Samuel L Jackson and John Terry took to the contact our Corporate London trading floor to answer calls and did their bit Team on: 01252 749049 to raise $12 million globally.
The Grey Matters Issue 11 23 Image: The Ali’s Angels Fund at The Twilight Walk in York Supporter Groups
“The only way to get through grief of losing Ali was to put my mind to fundraising and The Ali’s Angels Fund was born. Ali has left behind the most amazing bunch of friends a person could wish to have in their life and whilst I am running the fund, I couldn’t do it without their help and support. It is so important that we do this in Ali’s memory – to keep his spirit alive by helping others.”
The Ali’s Angels Fund
Supporter Groups are set up by families and friends in memory of a loved one Welcome to or inspired by someone living with a our new groups: brain tumour. We then work together The Alan Sansom Fund to achieve our goal of doubling survival within 10 years and halving the harm The Sue Robson Fund that brain tumours have on quality of life within five years. All of the money the The Ali’s Angels Fund groups raise funds areas of work they The James Willetts Fund have each selected. The Laura Fischer-Beards Fund The B-Hive Fund
24 The Grey Matters Issue 11 The Alex Bolt Golf Day and Gala Dinner
In its final year the Alex Bolt Golf Day and Gala Dinner, The Alex Bolt Fund has also Gala Dinner at Wentworth in November conquered Mount Kilimanjaro, held an 2015 was a huge success, raising over annual run ‘Bolt4Bolty’, hosted a number £150,000 on the night, bringing the total of coffee mornings and pampering for all five years to almost £500,000 to be evenings, as well as a celebrity cricket invested into finding new treatments for match and a ‘Bare All for Bolty’ calendar. paediatric brain tumours.
The Wentworth Gala Dinner began as a “To find a cure would be the most partnership between The Alex Bolt Fund, amazing thing. For any family to go ex-England cricket player, Darren Gough through what we went through, what and Alex’s PE teacher Gareth. The Alex Bolt our parents went through, if no one Fund was set up by Jeannette in memory else had to suffer it’s worth climbing of her son Alex who sadly passed away mountains and running distances.” from a high grade glioma, age 16 in 2011. Alex’s sister Susie Jeannette said: “Alex was incredibly sporty, fun-loving, kind and generous. He was a good son, we were very proud to be his parents.”
Alex and Darren had met after he had been diagnosed, Darren said: “When I spoke to him on the phone, sometimes he was well, sometimes he wasn’t so good, but what amazed me about the whole situation was that he was always so positive about it. I don’t think there was a negative bone in his body.
“I went from talking to him, to seeing him, to suddenly going to his funeral, that’s how quick it was.”
It was at Alex’s funeral that Darren Gough, Alex’s PE teacher Gareth and Alex’s Uncle decided that they wanted to do something to help and the first Alex Bolt Golf Day and Gala Dinner at Wentworth took place six months later. In addition to the Image: Jeannette and Peter Bolt at The Alex Bolt Gala Dinner in 2013. The Grey Matters Issue 11 25 Thank you for walking with us
Last autumn, over 1,400 of the brain loop. On returning back to base, they tumour community united at The Twilight were greeted with medals, refreshments Walk series, covering an incredible and music from live bands – a true hero’s 10,000km in total and raising over welcome. £220,000 to date for vital research. From supporters and volunteers to Thank you to everyone who walked clinical nurse specialists and researchers, with us to stamp out brain tumours. we were joined by all of those who have If you’d like to do the same and take part been affected, in one way or another, in this year’s events, keep your eye out by this devastating disease. for further details in the next edition of The Grey Matters. The walks took place across four different weekends in the beautiful locations of Windsor, Chester, Warwick and York. Along with the walkers’ friends and families “We had a great evening - all the who came out in support, the weather was volunteers were brilliant. We hope also on our side with a record four sunny to have raised about £1,500 between Sundays in a row! us all.”
Walkers set off as the sun went down Debbie joined us for and took in the sights during their 10km The Twilight Walk in Windsor.
26 The Grey Matters Issue 11 “For a group of people to get together like this to raise money is amazing. We’re all doing it in memory or for someone we know. There’s nothing more inspiring than that.”
Heather and Phoebe joined us for The Twilight Walk in York.
“Words cannot express how emotional but inspirational the entire event was and how lifted I felt by everyone else who was there, particularly all the young guys and girls who were there supporting their friends. Everybody was totally committed to doing their bit and to supporting each other.”
Alan lost his daughter to a brain tumour in 2003 and joined us for The Twilight Walk in Warwick.
“It was a really special day for me and my family on Sunday. The past year since my surgery has been a real struggle and so to finish the walk was a big achievement. I felt very humbled by reading the bibs of all those who had lost loved ones through the effects of brain tumours.”
Kim joined us for The Twilight Walk in Chester.
The Grey Matters Issue 11 27 By getting involved in Bandanas for Brain Tumours Day on Friday 4 March, part of Brain Tumour Awareness Month, you will be part of our united community and help raise awareness of brain tumours and vital funds for research into early diagnosis. Together, we raised over £86,000 last year. This year let’s make it even bigger and better!
28 Whatever your plans for Friday 4 March, make sure your bandana goes with you. Help raise awareness of brain tumours and #WearItOut with style, strength, attitude or love.
Help us spread the word far and wide by taking a selfie in your bandana and sharing it using the hashtag #WearItOut or on our pages: facebook.com/ thebraintumourcharity and @BrainTumourOrg on Twitter. It doesn’t have to end once you #WearItOut. Why not join thousands of other supporters helping us raise even more funds for early diagnosis? Bake it, swap it, give it up or look up other ways to fundraise at thebraintumourcharity.org/ wearitout
Buy your 2016 bandanas for £3.50 each (including postage and packaging) from thebraintumourcharity.org/ wearitout or call 01252 749043 The Grey Matters Issue 11 29 Thank you to The Brainy Bunch
We’re forever inspired by your dedication, effort and passion to raise funds and awareness for us. Here are just some of your fundraising highlights over the last few months: Join The Brainy Bunch today: 01252 749043 / [email protected]
Co-op employee Jackie Taylor and over 100 of her We had some amazing colleagues ascended the equivalent height of Everest runners join us for the (29,009ft) using their headquarters’ 14 floors of stairs. Great Scottish Run The six hour relay-style ascent involved 158 consecutive including Watson Jones climbs of the buildings 336 steps and raised £2,000 for us. who is 75 years old and ran the 10k in just 47 minutes, Jackie was inspired by the tragic loss of her husband Ian, and Kali, our youngest “I’m passionate that even the littlest contribution might runner at just five years stop other families dealing with the loss we have had old! She raised £461 on to endure so I’m going balls out to raise awareness her own in support of her in my own way. Even if it means climbing Everest!” Auntie, who is living with a brain tumour.
30 30 The Grey Matters Issue 11 Sally lost her dad to a brain Scape Group, based in Nottingham, have raised over tumour in May this year. £24,000 after choosing The Brain Tumour Charity as their She shaved her head in charity of the year partner for 2015. They have held a golf his memory and to support day, Bond themed quiz night and Steve Elkin, their Chief those who have to lose their Strategy Officer, took part in a 1,000 mile cycle challenge. hair to treatment.
250 staff and friends from The Rouleurs Cycle club Chris is living with a visual Newcastle-upon-Tyne law undertook a gruelling impairment following firm Major Family Law, three-day, 500km cycling treatment of his brain hosted a huge rounders trip around Ulster in tumour. In September match at The Falcons rugby October to raise funds 2015, a 12 strong team ground. Inspired by the and awareness for us and of friends helped him devastating diagnosis of a two other charities. The cycle the Way of The brain tumour affecting close challenge was inspired Roses, coast to coast from family and friends, the firm by fellow cyclist, Gideon Morecambe to Bridlington. has now raised £9,000 for Burrows, who was The group have raised vital research, awareness diagnosed with a low grade £11,187 to date. and support. inoperable brain tumour in May 2012. The Grey Matters Issue 11 31 Sarah and her family and friends have been raising funds A total of 48 runners took following the diagnosis of her brother-in-law Wayne. The part in the Ipswich Half group have so far taken part in events such as Wolf Run, Marathon in memory of a Row For It! Relay, Run or Dye, The Twilight Walk series, Ruth Mehmed. They have climbed Kilimanjaro and held a community tea party. raised £13,000 for The They have raised over £6,500 to date. Brain Tumour Charity.
Independent First in Jamie started fundraising for The Charity last year to mark Paisley recently held their what would have been his Mum’s 50th birthday, he raised Annual Golf Day, raising an incredible £13,000. Determined to equal if not exceed £5,100 for us. The two last year’s total, Jamie this year held a charity football Directors Eddie Rainey and tournament and did a 160ft bungee jump and has raised Scott Abraham have both a further £14,223 to date. lost loved ones to a brain tumour in recent years.
During August 2015, Colin cycled solo from Amsterdam to Budapest following the Rhine and Danube rivers, in memory of Cydara Verrier. He has raised over £1,000 to date.
32 The Grey Matters Issue 11 Thank you for all you do. Together we can defeat brain tumours.
We rely 100% on voluntary donations. If you know someone who would like to support our work why not give them your copy of this newsletter so that they can see the diffference we make.
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If you would like more copies please contact us: [email protected] 01252 749990 For queries about making a donation: [email protected] 01252 749043 Please return your donations to: The Brain Tumour Charity Hartshead House 61-65 Victoria Road Farnborough Hampshire GU14 7PA
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