THE BRAIN TUMOUR PATIENTS’ CHARTER OF RIGHTS
- Acknowledgment and Respect
- Appropriate Investigation of Signs and Symptoms
- A Clear, Comprehensive, Integrated Diagnosis
- Appropriate Support
- Excellent Treatment and High-Quality Follow-Up Care
- The Care Relationshi
- Supportive/Palliative Care
- . Rehabilitation and Wellbeing
- Medical Information and Privacy
- Appropriate End-of-Life Options and Care
WORLD BRAIN TUMOUR DAY ON 8TH JUNE
Brain Tumour Action supports World Brain Tumour Day.
This is a day for us all to remember this insidious disease, to tell others what symptoms to look out for and to support organisations helping sufferers and searching for treatments.
THE CHALLENGE OF FATIGUE
At the next Brain Tumour Action Support Group Early Evening Talk Helen Bulbeck, of the charity Brains Trust, will lead a conversation on the challenge of fatigue.
Tuesday 2nd June 2020
with Edinburgh Maggie’s Centre
5pm – 6.00
RSVP for link to Peter.Kravitz@maggiescentres.
Helen writes “One of the most difficult side effects of treatment can be that of fatigue. It effects patients and their families in obvious and also unexpected ways. We will begin with a discussion of what happens when fatigue takes hold, go on to look at the research on this done by Brains Trust and the support which they offer.”
IMPACT OF COVID-19 ON CANCER PATIENTS
Cancer Research UK (CRUK) are looking for people affected by cancer to take part in a short survey about how Covid-19 is impacting their life and treatment. This will help inform CRUK’s future work.
Link to tweet: https://twitter.com/CRUKScotland/status/1260110366077603841
“COVID-19: the brain tumour patient and caregiver experience”
We would greatly appreciate your help in disseminating an important international survey about “COVID-19: the brain tumour patient and caregiver experience”. This survey covers adults, children and caregivers and aims to capture the concerns and challenges facing brain tumour patients and caregivers at this very difficult time. The survey is available in seven languages and we hope that it will provide a data source to help us all identify where there is greatest need. The survey results will be sent to you, as brain tumour charities and not-for-profits, when they are analysed
The survey is part of the Society for Neuro-Oncology’s (SNO) COVID-19 Task Force work and it has been created by the International Brain Tumour Alliance (IBTA).
Here is a universal link to the English version of the survey with the option available on the landing page (upper right corner) to select one of six other languages as well as English:
CLAIMING BENEFITS AFTER DIAGNOSIS
Simon Glen will visit the Brain Tumour Support Group meeting on Tuesday 4th February at the Edinburgh Maggie’s Centre from 6pm to 7.30.
He will speak on the effects of claiming social security benefits for people with a brain tumour diagnosis.
His research is focussed on what it is like for people to claim benefits and how it might affect their recovery. He’s particularly interested in the conflict between the rehabilitation services – about people getting better – and the Department of Work and Pensions which is interested in how badly people are doing.
Simon Glen worked for Headway in Glasgow for 12 years and is currently training as a Counselling Psychologist at Glasgow Caledonian University, part of which is involving a placement at the Forth Valley Maggie’s Centre.
YOUTH AND PHILANTHROPY SUCCESS
A team of third year pupils at Firrhill High School, Edinburgh were chosen today as the winners of their school’s Youth and Philanthropy Initiative for 2019. As a result, they received £3000 for Brain Tumour Action.
Beth, Rosa, Lucy and Conal competed against seven other teams, all of whom spoke knowledgeably about their chosen charities but “our” team had not only prepared their material meticulously, they had then gone a stage further by visiting our Support Group after school and talking to patients,relatives and friends for over an hour. While there they took a series of photographs which they subsequently made into a video montage with music, captions and further information which was presented with great sensitivity. This really brought to life the challenges that face anyone who is living with a brain tumour.
Jennifer and Lynne attended the Final and were thrilled to accept the winning cheque. A huge thank you to Conal, Lucy, Rosa and Beth for their work and commitment.
IMPROVING OUTCOMES FOR BRAIN CANCER PATIENTS
The University of Edinburgh is delighted to invite you, your family and friends to join us for an evening of short talks and information sharing with our brain cancer researchers and clinicians.
Thursday 28th ,February 2019, 5pm – 8pm
Institute of Genetics and Molecular Medicine
Crewe Road South, Edinburgh, EH4 2XU
In 2018, the University of Edinburgh, in conjunction with colleagues from University College London, was awarded the CRUK Brain umour Centre of Excellence. In celebration of this, we would love to share with you how the award is shaping the future of brain tumour research in Edinburgh.
The event is very informal and will give you the opportunity to ask our team any questions you might have about their work following their short presentations.
After the presentations there will be refreshments and time to meet the team.
Registration will open at 5pm in the Main Reception at the Institute of Genetics and Molecular Medicine and the talks will start at 5:30pm.
To register please go to Eventbrite:
MOMENTUM – Strengthening Voices, Making Choices.
Momentum has a new service to support young adults, 18-35, with neurological conditions such as a brain tumour. The aim is to maximise independence and quality of life. They offer one-to-one support as well as weekly meet-ups and a peer-led social group. Based in Glasgow they cover most of central Scotland. All their services are free and anyone can self-refer. Contact: firstname.lastname@example.org or phone: 0141 419 5299. Find out more at www.momentumuk.org.uk
OUR NEWSLETTER KITE FOR WINTER 2019 IS HERE
Scottish Brain Tumour Symposium
The first Scottish Brain Tumour Symposium is taking place in Glasgow on 21 May 2018.
This event is being organised by brainstrust and Brain Tumour Research in collaboration with the Beatson Cancer Charity.
The event is designed for brain tumour patients and carers as well as healthcare professionals. The agenda will include expert speakers from many areas of brain tumour research and also discussion about the effects of being diagnosed and living with a brain tumour. It will include the latest news on advances into treating and managing brain tumours.
Find out more about the Scottish Brain Tumour Symposium on the official event website
WE HAVE A REVISED CONSTITUTION
Have a look at GOVERNANCE under ABOUT US or jump straight there at
This has been ratified by the association at our recent Annual General Meeting.
HOLISTIC NEEDS ASSESSMENT.
Janyne Asfeth, a nurse lecturer and PhD student at Edinburgh Napier University is undertaking a realist evaluation of Holistic Needs Assessment in neuro-oncology to help understand better how complex interventions help in some circumstances but not in others. She would like to interview adult patients and carers. The structured Interviews with specific questions will last between 30-60 minutes and will be recorded and anonymised, then evaluated. These interviews can also be undertaken by phone. She can travel to volunteer participants’ homes at a mutually convenient time. If you would like to participate please contact Janyne at email@example.com or phone: 0131 455 5703.
EXTRAORDINARY GENERAL MEETING
The Extraordinary General Meeting on 22nd December 2017 to change to the wording of paragraph 9 (c) of our Constitution, approved the change.
Paragraph 9(c) stated: The accounts shall be audited at least once a year by the auditor or auditors appointed at the Annual General Meeting.
This now reads: The accounts shall be subject to external scrutiny in line with the relevant requirements of legislation.
This follows advice from our Independent Examiners, Scott-Moncrieff, which brings our Constitution into line with current Best Practice in the matter of external scrutiny of our accounts.
Our accounts were scrutinized and duly submitted to OSCR before the last day of December, 2017.
Help is Needed
Brain Tumour Action is raising awareness about the signs and symptoms of brain tumours in young adults where delays in diagnosis sometimes occur.
We’re working to create a short video, featuring people’s own experiences. If you are between 21-39 and have ever been diagnosed with a brain tumour we’d really like to hear from you.
Alternatively, if you know someone who may be interested, please share this post.
All first-hand accounts will be voiced by actors to maintain complete confidentiality.
To find out more, e-mail administrator@braintumouractio
A STORY OF PERSONAL EXPERIENCE
‘It’s All in My Head’ by Jo Barlow.
Jo had brain surgery to remove a hemangioblastoma from her cerebellum in May 2016. Hemangioblastomas are rare, low-grade tumours that occur in the blood vessels of the brain and spinal cord. As she could find no information from others who had had similar surgery she decided to write her own book “It’s All in My Head” about her experience.
New guidance on interventional oncology
The Royal College of Radiologists (RCR) has just published a new edition of its guidance on the application and best practice of interventional oncology which may be of interest.
Interventional oncology is a fast-moving discipline which directly overlays the RCR’s two specialities of radiology and oncology; it concerns both the diagnosis and interventional treatment of cancer using image guidance techniques. The College’s original guidance, released in 2012, has been revisited to ensure clinicians remain up-to-date.
The second edition of “Interventional oncology: guidance for service delivery” does not cover diagnostic work-up, but sets out the roles and responsibilities of interventional radiologists within the wider multidisciplinary oncology team, and outlines the correct referral pathway for intervention, procedural best practice and patient recovery. It concludes with calls for wider education around interventional oncology developments among referring clinicians and service providers.
The guidance can be downloaded for free from the RCR website: https://www.rcr.ac.uk/publication/interventional-oncology-guidance-service-delivery-second-edition.
An App for brain injury and tumour patients
The Brain & Spine Foundation has launched the app ‘My Brain and Me’ for young people with any acquired brain injury including a brain tumour. Everyone who has an acquired brain injury is unique but many families report personality changes and anxiety issues. The app, which works as a mood diary, allows the young person to record their feelings, to aid them in making sense of their emotions and to encourage them to seek help when needed. It is available to download free of charge in the App Store and Google Play.
Mistreatment of patients with ongoing disabilities
Musician Rosie Glass, whom we featured in our KITE news letter, 2015-16 has launched her new blog, drawing attention to the mistreatment of patients with ongoing disabilities and campaigning to recognise their rights. See her blog HERE and follow the links at the bottom of the Posts.
Rosie writes: “It’s not solely aimed at brain tumour survivors with ongoing disabilities. I’ll be contacting many different disability rights organisations and groups aimed at a particular disability. I just started with brain tumour organisations because that was closest to me.”
We are helping to support an exciting new research project
A non-psychoactive compound found in cannabis called cannabidiol is to be tested for its effects on paediatric brain cancer cells by experts at Nottingham’s world-leading Children’s Brain Tumour Research Centre.
The Centre needs at least £100,000 to fund the new project and has just received grants from Brain Tumour Action, the Astro Brain Tumour Fund and from the Jessica Hope Foundation.
The research and fundraising is being championed by 4-year-old William Frost and his family from Newark, Nottinghamshire. William was diagnosed with an ependymoma brain tumour 3 years ago and is being treated at the Centre. See: www.makewilliamwell.com for more details.
Leading the research project Professor Richard Grundy said: “Brain tumours are the biggest cancer killer of children in the UK but the disease receives less than 1% of the UK’s cancer research funding. New ways to treat childhood brain tumours are urgently needed to extend and improve the quality of life in malignant brain tumour patients so we are excited at the prospect of testing the effect of cannabidiol on brain tumour cells.”
World Brain Tumour Day June 8th
See the YouTube video of contributions from charities world wide here
URGENT NEED FOR BETTER CANCER TREATMENT SERVICES
ROYAL COLLEGE OF RADIOLOGISTS TELLS PM OF URGENT NEED FOR INVESTMENT IN DIAGNOSTIC IMAGING AND CANCER TREATMENT SERVICES
The Royal College of Radiologists (RCR) has today written to Prime Minister Theresa May in support of concerns raised in a letter to the PM by the Royal College of Physicians of London (RCP) about the dire state of NHS services and the urgent need for investment.
The RCP view that the NHS is underfunded, under-doctored and overstretched, is borne out from data collected by the RCR which reveals a quarter of a million patients waiting over a month for the results of their X-rays and scans and the poor cancer outcomes in this country.
The RCR is urgently calling for more clinical radiologists and more clinical oncologists, and the need for a sustained program of investment in imaging and radiotherapy equipment.
BRAIN TUMOURS IN CHILDREN TOOLKIT
The Royal College of General Practitioners (RCGP) has just launched the Brain Tumours in Children Toolkit
This toolkit was created in partnership with national awareness campaign HeadSmart to bring together a collection of resources for clinicians and parents, to assist in the recognition and referral of brain tumours in children.
The RCGP are promoting the Brain Tumours in Children Toolkit throughout November.
Has your GP practice seen the RCGP Brain Tumours in Children toolkit? Direct them to http://www.rcgp.org.uk/clinical-and-research/toolkits/brain-tumours-in-children-toolkit.aspx
NEW DEVELOPMENTS FOR EDINBURGH CANCER CENTRE
As reported in The Scotsman scientists from the Cancer Research UK Edinburgh Centre will receive £3.7 million over the next five years for their research into tackling brain tumours. The funding will support scientists taking samples from patients’ tumours during surgery and then growing these brain tumour cells in the lab to study the faulty molecules that underpin the disease. This will help them discover better ways to treat and diagnose brain tumours, which still have poor survival rates.
Dr Steve Pollard is the lead scientist for the study which could help to save the lives of more people with brain tumours in the city – and across the UK – in the future. He said: “We’re delighted to have been awarded this grant from Cancer Research UK to help further our understanding of brain tumours. Whilst survival for many types of cancer has improved dramatically over the last 40 years, tackling brain tumours remains a real challenge and they take the lives of far too many people each year. The vital investment in this study is crucial to help us understand the biology of brain tumours and find new & better ways to treat them.”
Major Research Award
In another exciting development Dr Noor Gammoh is to receive £1.64 million from Cancer Research UK to support her research into glioblastomas. Around 265 people are diagnosed with glioblastoma in the brain every year in Scotland but the treatments currently available are limited and life expectancy after diagnosis is only about a year.
Dr. Gammoh is one of only three researchers in the UK this year to have been awarded a prestigious Career Development Fellowship by the charity. The grant will allow her to set up her own research group at the Cancer Research UK Edinburgh Centre based at Edinburgh University and the Western General Hospital. She said: “We are trying to understand the mechanism that allows tumours to survive and continue to grow. Hopefully that will lead us to new ways to tackle the disease and improve survival rates. “This is a kind of tumour where research has not made much advance for many years, so it is a tumour that needs more attention and focus so we can enhance the outcome for patients.”
Royal College of Radiologists – public lecture – The Changing Cancer Story
The changing cancer story – living with and beyond cancer is a video lecture by Professor Jane Maher, clinical oncologist, which uses the experiences of rock stars to explain how cancer is being treated, how patients are supported and how the public is being made more aware. The link to this video of the lecture, given on 23rd June, can be found here:
Melissa Pilkington, Research Assistant at the Department of Psychology, University of Chester, is involved in this study which is examining the psychological transition from end-of-treatment to recovery for cancer survivors. They are actively seeking recruitment.
Details can be found at Twitter: https://twitter.com/C_Survivorship
A New Graphic Novel by Eliza Fricker
Eliza will announce the release of “Just Getting Old” at a meeting of ‘Laydeez Do Comics’ at Gosh Comics, Soho at 7.30pm on the 18th of July. Eliza writes:
“The comic is about my mum who was mentally ill for a number of years which we later discovered was a brain tumour. During her illness her life changed considerably- she split up with my dad who she had been with for 42 years, lost her job and friends. She has since made a full recovery and is slowly putting her life back together. I have written it for her as she remembers very little of the five or so years she was ill and also to help my family clarify what happened. It is about a medical condition as well as families and breakdowns of families. I hope it will touch people who have been affected by long term illness as well anyone who has been embroiled in an emotional issue with loved ones.
Parliamentary Debate in Response to Petition
The debate on the need for more research funding for brain tumours took place in Parliament on the 18th of April. It can be be viewed at:
Some excellent points were made in a most civilized, cross-party discussion. It is hoped that the broad consensus of opinion expressed will lead to greater funding for training, diagnostic tests and treatment as well as for research.
Recycling for Brain Tumour Action
A fund raising company Recycling for Good Causes has offered to raise funds for us by marketing and selling small items we donate to them and returning to us 75% of any profit that arises. Their scheme is used by many major charities.
You can donate:
- Any jewellery – gold, silver, costume jewellery, watches, broken and damaged items (like odd earrings, snapped chains or items with missing stones).
- Unwanted banknotes from ANY country of any age, so all of those obsolete pre-euro notes are a perfect start!
If you would like to donate your jewellery and banknote recycling, pop your items into an envelope or jiffy bag no larger than a size A5 envelope and post free of charge to:-
Brain Tumour Action, UNIT 14, AMBER BUSINESS VILLAGE
AMBER CLOSE, TAMWORTH
Please do not send coins to the freepost address above as the postage costs will far outweigh your donation.
You can also donate your used stamps to raise funds for Brain Tumour Action. All kinds of stamps are welcome, on or off paper.
Simply cut or carefully rip the postage stamp from the used envelope, being careful that you don’t damage the stamp, and once you have a collection, pop them in an envelope and post them to :
Brain Tumour Action
PO Box 16992, Sutton Coldfield
You must put the correct postage on the envelope. It is not free.
Good News at Last!
Many thanks to everyone who signed the petition, “Fund more research into brain tumours, the biggest cancer killer of under-40s”, and to Brain Tumour Research for all their efforts in promoting this. See https://petition.parliament.uk/petitions/105560
This Petition closed with almost 120,000 signatures thus obliging Parliament to debate the issue. Here is what they have said:
The Petitions Team – UK Government and Parliament:
You may know that the House of Commons Petitions Committee has been looking into funding for brain tumour research as a result of this petition. The Committee is now preparing its report. The report will present the evidence the Committee has heard and make conclusions and recommendations which the Government will respond to.
The Committee has agreed to schedule a debate on this petition after its report has been published.
You can read more about the Committee’s inquiry into funding for brain tumour research here: http://www.parliament.uk/petition-inquiry-brain-tumour-research
NHS inform is the National Health Information Service providing a coordinated approach and single source of quality assured health and care information for the public in Scotland.
Look Good Feel Better
Look Good Feel Better is the UK’s only national cancer charity dedicated to helping women and teenagers manage the effects that cancer and its treatment have on their appearance, runs free skincare and make-up Workshops throughout the UK for people undergoing any type of cancer. The two hour sessions are led by trained beauty volunteers, who share tips and techniques to help with eyebrow and eyelash loss and changes to the skin. To compliment these sessions we also have our new self-help Confidence Kit booklet and DVD, which help people to remember what they have learnt at the sessions or for people who are unable to attend or who live in remote locations
Tel: 01372 747500
The Listening Books Library
Listening Books is a UK charity providing thousands of fantastic audiobooks in three easily accessible formats: downloads, internet streaming and MP3 CDs. It has some 38,000 members and the service is available to anyone who has a disability or illness which makes it difficult to hold a book, turn its pages, or read in the usual way. The library caters for both adults and children. The library is available to thousands of pupils with special educational needs through a partnerships with regional online grids across the UK.
Wholistic Support Website
Katie Sheen from the Astrofund has created a new resource to give wholistic support. It can be found at Soul Nutrition. A free trial is available and Katie would welcome your comments and feedback. Part of the profits from Soul Nutrition will go to support research into low grade gliomas.
A Special Day Out
The Willow Foundation is the only UK charity that supports seriously ill adults between the ages of 16 and 40 by offering Special Days out. These events are designed for maximum enjoyment and to provide a positive time away from the stress of treatments, tests and hospital appointments. Over 10,000 such days have been provided to date. More information can be found on their website: https://www.willowfoundation.org.uk/have-special-day
Medical Travel Insurance
Get charity insurance from Endsleigh.co.uk