Highlights 2014/15 Trustees’ Annual Report 1st April 2014 to 31st March 2015
The fight is so much more than the diagnosis. We know.
Contents Our challenge
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Trustees’ summary – A year of progress
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Objectives and activities
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Our main achievements this year
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Financial review
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Structure governance and management
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Relationships and collaboration
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Statutory information and further contact details
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Declaration
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brainstrust trustees’ an n ual r eport: 1 st Apr i l 2014 to 31 st Ma rc h 2 0 1 5
Our challenge At least 1 person in 800 is living with a brain tumour in the UK. England alone has at least 60,000 people living with this disease. Up to 40% of all cancers spread to the brain and more people under 40 die of brain cancer than from any other form of cancer. A brain tumour diagnosis is confusing, isolating and overwhelming. These problems are exacerbated by not being able to access care and information quickly and easily. Yet we know that access to proactive support, and good information can improve knowledge and understanding, reduce anxiety, increase preparedness for events, instil control and improve satisfaction with treatment in brain tumour patients and their carers.
Whilst caring touches every family in the UK, people living with brain cancer have a double blow. They have to deal with the diagnosis of cancer, and they also have to cope with the progressive neurological disease that can significantly change the appearance and personality of the person who is afflicted. brainstrust helps brain tumour patients and carers to engage in their care so that they can take control and be confident that they are working towards the best possible outcome for their situation. Our relationship with our patients and carers enables them to face their challenges, so that they learn how to develop resilience and use resources to their full potential.
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b ra i n s t r u s t tr u ste e s ’ a n n ual r eport: 1 st Apr i l 2014 to 31 st Ma rc h 2015
A year of progress In 2014/15 we helped more people than ever before. We are now supporting 2090 people directly with our 24/7 phone and email help, with 398 of these people contacting us for the first time during the period in question. Over 126,000 new people accessed our online information and communities. These people turned to brainstrust for vital information, guidance and help at a difficult and desperate time. Furthermore, we have been able to consolidate 9 years of experience working with the brain tumour community into a report that has, for the first time identified comprehensively the needs of those diagnosed with a brain tumour. Our ‘Brain Tumour Tissue Campaign’, launched in March 2015, brings together the clinical, charity and patient communities to improve consent levels for brain tumour tissue to be used in research. The award winning Cancer Patient Portal, our collaboration with Cancer Research UK, the National Cancer Intelligence Network and the National Cancer Registration Service of Public Health England has evolved from pilot stage, unlocking Registry held information for the brain tumour community. Little brainstrust, our dedicated service for children and families has expanded significantly, attracting funding from the National Lottery and the general public. New support groups are up and running, enabling us to reach more people, and we are working on new resources.
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And we have been able to identify the top ten uncertainties to be tackled by researchers into brain tumours. This work has been an exciting collaboration with other brain tumour charities, clinicians, the James Lind Alliance Priority Setting Partnership and the Cochrane Collaboration. We have also established our position on campaigning, setting out to put the world right, the right way, for people with a brain tumour. We know that by understanding the real issues people face, we can improve on quality of life. And if quality of life is improved, so is prognosis. We also know that a brain tumour cure can’t happen until there’s a good research infrastructure, with proper patient involvement. These ideas sit behind all of our campaigning work. We are regarded by the clinical community to be the best patient facing brain cancer organisation and are now regularly invited to present at international and national conferences to talk about the challenges that face our community, and what we can do together to make their world a better place. All this progress needs funding. And last year’s record fundraising has proven tough to improve upon. But we have further consolidated our position and the foundations are in place for us to move towards our goal of being able to help all of the 60,000 people in the UK who are living with this devastating disease.
brainstrust trustees’ an n ual r eport: 1 st Apr i l 2014 to 31 st Ma rc h 2 0 1 5
The Trustees believe that brainstrust is both well established and in good health and heart to make a continuing significant difference (in the future) to the wellbeing of, and outcomes for people with a brain tumour across the UK. brainstrust continues to be unique in what it offers, is well placed to expand, and is doing so by providing a proven and impactful support model applied with a regional focus across the UK.
Right now, today, your support is changing lives. Our challenge for the future is to build on our success to date, and increase the scale of our organisation so that we can reach everyone that needs our help. Kevin Higgs Chair of Trustees August 2015
We look forward to being able to say that we have helped every brain tumour patient and carer to be more in control and more confident that they are working towards the best possible outcome for their situation.
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b ra i n s t r u s t tr u ste e s ’ a n n ual r eport: 1 st Apr i l 2014 to 31 st Ma rc h 2015
Objectives and activities Our Vision
Our promise
brainstrust’s vision is for everyone with a brain tumour to be resilient and resourced so that they can achieve the best possible outcome for their situation.
We promise that the people who need our help find us to be:
We know that with the ongoing support of our community, and hard work of our team we can make this happen for each of the 60,000 people in the UK living with a brain tumour.
How we help We’re here to help people diagnosed with a brain tumour, and those that care for them. We want these people to understand what is happening and to take control following a diagnosis so that they can be confident that they have secured the best possible outcome for their situation. We provide pragmatic support and advice from the point of diagnosis. We can do this because of our team’s experience of battling brain cancer, our unique network of advisers, and our supporters in the medical, scientific and nursing community. Elemental to our work is high performance coaching. This sets us apart. When we are no longer to able to change a situation we are challenged to change ourselves. Our coaching relationships enable people to face the many unique challenges of the brain tumour journey, so that they learn how to develop resilience and utilise resources to their full potential in their battle.
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Proactive, not reactive
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About growing as a person
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Truthful – you’ll have real conversations
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Personal, face to face
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Shared – at brainstrust we have direct experience of living with a brain tumour and cancer
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Focused on living
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Collaborative so that everyone benefits.
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We are not ‘just a phone line’. Instead, we offer a range of personal support services that embrace the ways that people with a brain tumour want to communicate, and that are accessible when these people need to use them. We provide 24/7 phone and email support, face to face ‘Meet Ups’, printed information and support tools, as well as an online community and two websites that each meet a specific, predetermined set of needs: www.brainstrust.org.uk and www.braintumourhub.org.uk In short? Our help translates into real, improved clinical outcomes for our patients.
brainstrust trustees’ an n ual r eport: 1 st Apr i l 2014 to 31 st Ma rc h 2 0 1 5
Our help: 2014 to 2015
How we raise funds
In our first year, 2006, we directly supported 22 people who had been diagnosed with a brain tumour, and their families.
We raise funds to pay for our charitable work through a wide programme of community and sporting events and other opportunities which embrace the traditional charity fundraising channels.
This year, to the 31st March 2015, we have seen this number increase to over 2090 people, with over 126,000 accessing the supportive information on our websites. On average new patients contact us directly at a rate of about 8 a week, with many more joining our online communities every day. Sadly some of these people have died in tragic circumstances, which brings into sharp focus brainstrust’s reason for being. The total number of people upon whom our activities impact but with whom we do not have direct contact is unquantifiable. The patients, their needs and the needs of their families are wide ranging, as are the types of tumour with which they have been diagnosed.
Through seeking publicity and promotion of our supportive work, and for the plight of those diagnosed with a brain tumour, we also receive unsolicited donations from individuals, from funding charities, and from corporate donors. Mindful of the Charity Commission’s guidance on public benefit, we work collaboratively with other charities involved in support for brain tumour treatment and research to ensure the widest possible reach. These collaborative relationships include and are not limited to Cancer Research UK, Macmillan Cancer Support, Brain Tumour Research and the International Brain Tumour Alliance. Having met the objectives outlined in our 5 year plan to 2013, brainstrust now has a clear plan, and vision which clarify what it is we need to do and how it is to be done running up to 2020. This second phase of strategic planning was completed in early 2014.
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I wish all the people in the world were like you, ❝ it would be heaven on earth. I don’t feel so alone at all now thanks to you. ❞ BRAIN TUMOUR CARER
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brainstrust trustees’ an n ual r eport: 1 st Apr i l 2014 to 31 st Ma rc h 2 0 1 5
Our main achievements this year Putting you back in control We are proud of our achievements at brainstrust over the past 12 months, and how the Charity’s reach has grown. We have significantly increased our support and help for people with a brain tumour. Demand on our help and support service has increased by 70% and continues to grow. Additionally we are receiving far more requests from people who require support prior to a definitive diagnosis. 150 more people have received a brain box to help them get back on top of things following a diagnosis and brainstrust Meet Ups have grown hugely, with 506 people now registered for the events (up from 350 last). 34 Meet Ups were held this year, with approximately 400 people having attended a Meet Up during the period that this report covers. Key achievements for our community during the year in question include: The publication of ‘Quality of Life: What the brain tumour community needs’. We have been able to consolidate 9 years of experience working with the brain tumour community into a report that has, for the first time identified comprehensively the needs of those diagnosed with a brain tumour.
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Our ‘Brain Tumour Tissue Campaign’, launched in March 2015, brings together the clinical, charity and patient communities to improve consent levels for brain tumour tissue to be used in research.
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The award winning Cancer Patient Portal, our collaboration with Cancer Research UK, the National Cancer Intelligence Network and the National Cancer Regisatration Service of Public Health England has evolved from pilot stage, unlocking Registry held information for the brain tumour community.
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Little brainstrust, our dedicated service for children and families has expanded significantly, attracting funding from the National Lottery and new support groups. This has enabled us to reach more people and produce new resources. This service is now helping 70 families to deal with: – Communication challenges – The cost of travel – Tackling isolation – Improved access to information
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And working with the James Lind Alliance Priority Setting Partnership and the Cochrane Group, we have been able to identify the top ten uncertainties to be tackled by researchers into brain tumours.
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We have also established our position on campaigning, setting out to put the world right, the right way, for people with a brain tumour. We know that by understanding the real issues people face, we can improve on quality of life. And if quality of life is improved, so is prognosis. We also know that a brain tumour cure can’t happen until there’s a good research infrastructure, with proper patient involvement. These ideas sit behind all of our campaigning work.
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Creating the change Of course all of this wouldn’t be possible without your support. And thanks to you, we can say we’ve had another fantastic year of fundraising for brain tumour support. Your support really is helping us to make the brain tumour population more resourced and more resilient in the face of an isolating, confusing and terrifying diagnosis.
Our Income: £0.42m Interest: £60 Sponsored activities: £87,406 Partner fundraising groups: £59,683 High profile events: £82,662
Personal Donations: £57,002 Grants from other charities: £80,544 Corporate support: £9,429 Gift Aid recovered: £40,765 Trading: £4,885
How we spend your funds: £0.46m Governance costs: £6,065 Cost of generating income: £54,595
Charitable activities: £400,795
Our income is generated through a mixture of traditional charity fundraising channels, with an emphasis on community activity (events, cake sales, tea parties, school fundraising etc) and grants from both national and regionally focused charitable organisations. We do not receive any government funding for our work.
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The cornerstone of brainstrust’s sustainability and stability is the overwhelming support that we receive from our community. During the year we had an increased number of team brainstrust participants, through promoting places we purchased and own place events. One of our goals was to fill more of our bought places, and we achieved this, with 9 out of every 10 places filled, delivering a return on investment of 445%. Our participants who secured their own places in sporting events raised an average of £630 per person, which is testament to both the importance of our work to these people and the stewardship provided by the fundraising team. Our two ‘main’ community fundraising events, ‘Teafest’ and ‘Wear Grey for a Day’, attracted over 15000 participants, and raised in excess of £17,000. This is an unprecedented level of engagement for brainstrust and we aim to capitalise on this success, with growth of both of these events planned for 2015/16. We have also been fortunate enough to have increased levels of grant income receiving a total of £80,554. This represents a 44% year on year increase, and includes but is not limited to support from the Rank Foundation, Macmillan Cancer Support, the May Hearnshaw Trust, the National Lottery’s ‘Awards for All’ programme, the Wyseliot Charitable Trust, the Foundation for Children, and the Monica Rabagliati Charitable Trust.
brainstrust trustees’ an n ual r eport: 1 st Apr i l 2014 to 31 st Ma rc h 2 0 1 5
Financial review The Trust’s published statutory accounts for 2014/15 include the details of the source and application of funds, and the financial position of the Trust at 31st March 2015. In summary, gross income generated in 2014/15 was £422,436 (2013/14 £435,232). The net deficit for the year was £39,019 (2013/14 net surplus of £5,093). The first annual operating deficit in the Trust’s nine year history illustrates the difficult climate in which the UK charity sector has continued to operate, in spite of the improving national economy. For the year under review, the deficit has been funded from reserves. The Trust’s fundraising resources have been significantly strengthened to reverse the operating deficit, and the surplus for the first few months of 2015/16 illustrates the effectiveness of this. The principal sources of income continued to be from grants and donations, including through other trusts and grantmaking organisations, and corporate donors; through the organisation of social and sporting events; through the sponsored activities of very many active supporters (marathons, cycle rides etc); through the sale of branded items (Christmas cards, clothing etc) both through mail/internet order and via charity market stalls; and, of course, the welcome recovery of Gift Aid tax on eligible donations. Team brainstrust, a focus of development for several years, continues to grow steadily, particularly in the breadth and depth of sponsored events supported by the Trust, and through the efforts of our dedicated voluntary fundraisers.
The majority of income, both general and restricted, is applied to supporting patients and their families from the point of a brain cancer diagnosis. The Trust also funds research and resources that are defined to lead in the short term to better outcomes for patients. The Trust has only cash investments, deposited with NatWest Bank and The Cooperative Bank. At 31st March 2015, the Trust had net unrestricted reserves of £86,271 (2014 £118,623) and net restricted income fund reserves of £68,200 (2014 £74,268). The reduction in unrestricted reserves, and where appropriate, in restricted reserves, illustrates the absorption of the deficit for 2014/15. The target level of unrestricted reserves is 4 months of core expenditure. At 31/03/2015 this figure stood at just over 3 months, but the surplus for the first few months of 2015/16 has seen the realisation of this target back on track.
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b ra i n s t r u s t tr u ste e s ’ a n n ual r eport: 1 st Apr i l 2014 to 31 st Ma rc h 2015
brainstrust has been a shining light in my ❝ dark days. Just knowing someone is there is real
comfort… It’s great to just know other people who truly understand how hard it is sometimes. BRAIN TUMOUR PATIENT
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brainstrust trustees’ an n ual r eport: 1 st Apr i l 2014 to 31 st Ma rc h 2 0 1 5
Structure governance and management brainstrust continues to be constituted as a Trust, governed by its Declaration of Trust, dated 4th March 2006. The overall guidelines for the management and administration of the Trust are incorporated in the Declaration of Trust dated 4th March 2006 as amended by Deeds of Amendment adopted by the Trustees under the terms of the original Deed and notified to the Charity Commission.
The stated statutory objectives of the Trust, applicable equally to all of our work in England, Scotland, Wales and Northern Ireland are to provide funding for the support of and treatment for people diagnosed with primary brain cancer, particularly critically sited brain tumours. The trust also funds translational scientific research into the treatment of brain cancer.
the brainstrust
Trustee Chris Baker Support Specialist Helen Bulbeck Director of Services and Policy
Trustee Gillian Bilbo
Support Specialist/ Community Fundraiser
Trustee Philip Cuff Peter Bulbeck Administrator
Support Administrator
Support Specialist/ Community Fundraiser
William Jones Director of Development
Head of Fundraising: Community and Volunteering
Community Fundraiser
Trustee Catherine Fitton
Trustee Kevin Higgs
Trustee Hannah Richardson
Marketing Assistant
Fundraiser: Grants, Trusts and Charity Events
Data Manager
Charity Commission
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Management
Trustees
The Declaration of Trust places overall responsibility for the proper governance of the Trust with the appointed trustees. Day to day management of the Trust is delegated to Dr Helen Bulbeck, Director of Services and Peter Bulbeck, Director of Finance who have been appointed respectively the director and the administrator of the Trust, and William Jones, Director of Development. This team makes recommendations to the trustees on the Trust’s vision, clinical research and patient/carer support, financial, fundraising and promotional activities.
brainstrust’s Trustees are Catherine Fitton, Kevin Higgs, Philip Cuff, Christopher Baker, Gillian Bilbo and Hannah Richardson.
In addition, the brainstrust (a team of experienced, knowledgeable people – see under advisers) provides support to ensure that funds raised are spent as efficiently as possible, on resources that will be useful to people affected by brain cancer.
Senior Staff Contacts Dr Helen Bulbeck (Director of Services) helen@brainstrust.org.uk Peter Bulbeck (Director of Finance and Clerk to Trustees) hq@brainstrust.org.uk William Jones (Director of Development) will@brainstrust.org.uk
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The Board of Trustees meets formally three times a year to ratify the broad strategy and areas of activity for the Trust. In addition, Trustees meet with members of the team individually and for other purposes e.g. to work on specific projects. All Trustees give their time freely and no remuneration is paid. In accordance with Clause 9 of the Trust Deed dated 4th March 2006: (i) There must be at least three trustees. Apart from the first trustees, every trustee must be appointed by a resolution of the trustees passed at a special meeting called under clause 15 of this deed. (ii) In selecting individuals for appointment as trustees, the trustees must have regard to the skills, knowledge and experience needed for the effective administration of the charity. (iii) The trustees must keep a record of the name and address and the dates of appointment, reappointment and retirement of each trustee. (iv) The trustees must make available to each new trustee, on his or her first appointment: (a) a copy of this deed and any amendments made to it; (b) a copy of the charity’s latest report and statement of accounts.
brainstrust trustees’ an n ual r eport: 1 st Apr i l 2014 to 31 st Ma rc h 2 0 1 5
Advisers brainstrust would like to thank these important members of our advisory panel. Type of adviser
Name
Address
Solicitor
Mr Hugh Whitlock
44 High Street, Milford-on-Sea, Hampshire SO41 0QD
Accountancy and Audit
Mrs Elizabeth Dack
Harrison Black, Chartered Accountants, Pyle House, 137 Pyle Street, Newport, Isle of Wight PO30 1JW
Bankers
Co-operative Bank
Delf House, Southway, Skelmersdale WN8 6WT
Bankers
NatWest Bank
105 High Street, Winchester, Hampshire SO23 9AW
PR/media
Aberfield Communications Ltd
Airedale House, Kirkstall Road, Leeds LS4 2EW
Branding and online communications
Think Creative Consultants Ltd
88–89 High Street, Winchester SO23 9AP
The ‘brainstrust’ – a team of trusted advisers which represents different aspects of the brain tumour community
Mr Paul Grundy
Wessex Neurosurgical Centre, Southampton
Mr Andrew McEvoy
National Hospital for Neurology and Neurosurgery, Queens Square, London
Mr Paul Chumas
Leeds General Infirmary
Mr Conor Mallucci
Alder Hey Children’s Hospital
Mr Kevin O’Neill
Charing Cross Hospital
Mr Stephen Price
NIHR Clinician Scientist and Hon. Consultant Neurosurgeon
Mr Colin Watts
Addenbrooks Hospital
Mr Andras Kemeny
Consultant Neurosurgeon, Director of the National Centre for Stereotactic Radiosurgery
Mr George Samandouras
National Hospital for Neurology and Neurosurgery, Queens Square, London
Dr Willie Stewart
Consultant Neuropathologist
Dr Kathreena Kurian
Consultant Neuropathologist
Ingela Oberg
Clinical Nurse Specialist
Mary Fraser
Clinical Nurse Specialist
Dr Daniel O’Hara
Clinical Psychologist 13
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Type of adviser
Name
Address
The ‘brainstrust’ – a team of trusted advisers which represents different aspects of the brain tumour community
Dr Alisdair Rooney
Neuropsychologist
Professor Neil Burnet
Radiation Oncologist
Dr Darren Hargrave
Paediatric Oncologist
Dr Lucy Brazil
Consultant Neuro-oncologist
Professor Anthony Chalmers
Consultant Oncologist
Dr Robin Grant
Consultant Neurologist
Dr Jeremy Rees
Consultant Neurologist
Dr Jane Neerkin
Consultant in Palliative Medicine
Dr Jane Fleming
Consultant in Palliative Medicine
Nicola Lee
Clinical Specialist Radiographer
Professor Geoff Pilkington
Professor of Molecular and Neuro-oncology
Pam Bostock
Managing Partner at Zinnia Consulting
Megan Hill
Patient
Gregor Buick
Patient
Heidi Gould
Patient
Josephine Jones
Patient
Caroline Philips
Patient
Hannah Richardson
Carer
Ian Ledger
Carer
Lyndsey Green
Parent Carer
Jill Prawer
Parent Carer
Pete Burchill
Parent Carer
Rebecca Robinson
Charity lead, Queens Square Gamma Knife Centre
brainstrust trustees’ an n ual r eport: 1 st Apr i l 2014 to 31 st Ma rc h 2 0 1 5
Relationships and Collaboration We believe that no one of us is as smart as all of us. Meaningful collaboration is a key component of our approach as we work to help every one of the 60,000 people living with a brain tumour in the UK.
brainstrust’s partnerships Patient focus
Clinical focus
Public Health
Charities
35 Neurosurgical centres PLUS satellite hospitals
The British Neuro-Oncology Society (BNOS)
National Cancer Research Network (NCRN)
Cancer Research UK
National Council for Palliative Care
The Society of British Neurosurgeons (SBNS)
National Cancer Registration Service (NCRS)
Macmillan
CHAIN (the Contact, Help, Advice and Information Network)
Society of Neuro-Oncology (SNO)
The National Cancer Information Network (NCIN)
Marie Curie
The Cancer Campaigning Group (CCG)
Scottish Adult Neuro-Oncology Network (SANON)
Public Health England
IBTA
Independent Cancer Patients Voice (ICPV)
European Association of Neuro-Oncology (EANO)
Brain Tumour Research
The King’s Fund
British PsychoOncology Society
The Rarer Cancers Foundation
South England Brain Tumour Alliance (SEBTA)
Brain and Central Nervous System Clinical Studies Group (CSG)
Cancer 52
Patient Information Forum (PIF)
NHS Brain and Central Nervous System Clinical Reference Group (CRG)
Brain and Spine Foundation
National Council for Palliative Care (NCPC)
NCRI Neuro-oncology palliative care subgroup
Brain Tumour Research and Support across Yorkshire 15
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Patient focus
Clinical focus
Public Health
Charities
Clinical and Translational Radiotherapy Research Working Group and executive (CTRad)
Charlie’s Challenge
British Neuropathology Society
Headcase
James Lind Alliance (JLA)
Katy Holmes Trust
Cochrane Collaboration
Lisa Wiles Red Wellies Support Fund The PPR Foundation Thorne Mason Trust Brain Tumour Support Brain Tumour Research Campaign Brainwaves NI Children’s Brain Tumour Foundation Ellie’s Fund Astro Brain Tumour Fund Anna’s Hope Levi’s Star Ellie Savage Memorial Trust Inbetweenears Clic Sargent Lynne Liddle Brain Cancer Trust
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brainstrust trustees’ an n ual r eport: 1 st Apr i l 2014 to 31 st Ma rc h 2 0 1 5
Statutory information and further contact details Helping you
Registration
Talk to our experts or leave a message 24/7 on 01983 292405 or email hello@brainstrust.org.uk
Registered as a charity in England and Wales with the Charity Commission as number 1114634, and with the Office of the Scottish Charity Registrar as number SC044642.
Helping us Make a donation at www.brainstrust.org.uk/donate.php or call us on 01983 292405 during office hours.
Registered address 4 Yvery Court, Castle Road Cowes PO31 7QG www.brainstrust.org.uk
For fundraising opportunities, contact tessa@brainstrust.org.uk or call direct on 01983 213575. Share your story at www.facebook.com/brainstrust and help us campaign for change at www.braintumourawarenes.org.uk
Declaration The Trustees declare that they have approved the trustees’ report above. Signed on behalf of the charity’s Trustees Full name(s): Position:
Kevin Higgs Chair of Trustees
Date:
9th September 2015
(eg. secretary, chair, etc.)
Catherine Fitton Trustee
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Š brainstrust 2015