butterfly thyroid cancer trust
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BUTTERFLY THYROID CANCER TRUST
FINANCIAL ACCOUNTS FOR THE
YEAR ENDED 31ST DECEMBER 2018
Registered Charity number: 1108932
TS14 6AP
DRAYCOTT & KIRK
CHARTERED ACCOUNTANTS
92 Westgate
Guisborough
Cleveland
Trustees: Mr F Stafford F.R.C.S
Mr R Bliss F.R.C.S.
Mr J Salter
Mr D Farnell Bsc
Mrs L Abbs RN
Mrs R Newton
Address PO Box 205
Rowlands Gill
Tyne & Wear
NE39 ZWX
Bankers Lloyds TSB
West Street
Gateshead
Accountants Draycott & Kirk
Chartered Accountants
Cleveland House
92 Westgate
Guisborough
CLEVELAND
TS14 6AP
Reg. charity no. 1108932
BUTTERFLY THYROID CANCER TRUST
SUPPORT GROUP INFORMATION
PERIOD ENDED 31 DECEMBER 2018
Page 1
Registered charity number 1108932
Charity's principal address PO Box 205
Rowlands Gill
Tyne & Wear
NE39 ZWX
Names of Charity trustees who manage the charity
Mr F Stafford F.R.C.S
Mr R Bliss F.R.C.S.
Mr J Salter
Mr D Farnell Bsc
Mrs L Abbs RN
Mrs R Newton
Structure, governance and management
Governing document Trust Deed
Constitution Trust
Trustee selection methods Trustees selected by existing Trustees
Objectives and activities
To alleviate the physical, psychological or financial difficulties or hardship of people affected by thyroid cancer.
To promote education about thyroid cancer to members of the public at large.
The charity provides: A dedicated telephone helpline. Holidays
A buddy system Awareness Events
Patient information packs Research Grants
Website Patient information DVD
On site clinical support Suppression cards
Hospital visits Conference Presentations
Facilitates patient introductions RAI room accessories
Attends thyroid cancer conferences Clinical Trials advisory role
Network of patient support contacts Patient information advisory role
RAI room renovations/revamp
Volunteers and group members are involved in fund raising activities. They attend and provide information
stands at relevant conferences.
Page 3a
BUTTERFLY THYROID CANCER TRUST
TRUSTEES ANNUAL REPORT
FOR THE YEAR ENDED 31ST DECEMBER 2018
Summary of the main activities and achievements undertaken for the public benefit in relation to the objects
Patient information dissemination is ongoing with around 40 centres having now adopted the ‘Thyroid Cancer Uncovered’ DVD
TSH patient suppression cards are customised to treatment centres with nine new clients adopting their use.
Dr./ Patient conference 2016 footage is now available to view on the website ‘www.butterfly.org.uk’
£65k research grant awarded to Mr Palazzo and Mr Tolley, Imperial College Hospital London researching near infrared autofluorescence of the
parathyroid glands. ( £25k boost from single beneficiary) Research ceased after 12 months as the preliminary results suggested no difference in
operative outcomes. Only £20k donated.Research work Published.
£60k grant awarded to Dr Kate Newbold at Royal Marsden – research into ‘Circulating DNA’ proved to be successful and has been presented and
published and will be rolled out by NCRI as a multi centre trial.
NICE Lenvima/ Sorafenib Appraisal process submission
NICE Cabozantenib/ Vandetanib process submission
First wall glamour installed to RAI rooms on Ward 36 NCCC, Newcastle. This has been rolled out as a national project, co-ordinating with Grosvenor
Interiors. Installations to over 20 rooms have been completed.
Kate and Rachel ‘Patient Story’ leaflets published in collaboration with Genzyme
Dr Tom Milner was sponsored to present an abstract at 2017 World Thyroid Congress (WTC) in Boston from data collected from
‘RAI UK PT EXPERIENCE’ survey carried out at the aforementioned patient/doctor conference 2016.
Dr Lottie McIntyre presented poster abstract at 2017 WTC in Boston following results from survey carried out at patient / doctor conference 2016 in by
Mr Neil Tolley in collaboration with BTCT
Radio 4 interview : ‘Over diagnosis of Thyroid Cancer’
Standardisation of patient restrictions following the treatment of thyroid cancer with radioiodine:
A collaborative project by 15 Nuclear Medicine Departments in England and Scotland.
Following results of ‘RAI UK’ survey, BTCT collaborated with Ian Driver, Head of Nuclear Medicine, Freeman Hospital regarding conflicting
RAI info to patients as result of this survey.
List of questions to 15 leading units – this work is on-going.
Abstract for poster presentation at the British Nuclear Medicine Society Autumn meeting 2017 - ‘When can I Sleep with my partner ?’
Submission to Nuclear medicine conference Birmingham October 2018.
SF Attended BAETS conference 2017, Belfast. Rachel Newton assisted in manning BTCT stand, shared with TC Wales Group, (Helen Hobrough)
Support for Dr Niraj Goyal (oncologist) re Thyrogen access North London .
Application for research from Dr Catriona Douglas, Glasgow re. number of patients diagnosed with TC. This was rejected by trustees.
Appraisal submission for Lenvatenib Wales (Laura Moss)
Awareness information to York for September requested by CNS- BTCT provided DVDs, leaflets etc for information
Acted as patient advocate for pt. in Uruguay to access Vandetanib with Sanofi
Second pt. submission for Vandetanib nice meeting in Manchester
KF accepted invitation to be trustee of BAETS .
NICE appraisal meeting July 2017 Vandetanib/Cabozantenib
Awareness month (September): advert disseminated to all trust intranets, TCUK forum, and all CNS
Advisory role for ENT Curriculum review for newly appointed ENT hospital doctors
Media coverage of NICE decision on prescribing Vandetanib/Cabo
NICE meetings MTC and DTC drugs and appeal meetings
BUTTERFLY THYROID CANCER TRUST
TRUSTEES ANNUAL REPORT
FOR THE YEAR ENDED 31ST DECEMBER 2018
Page 3b
Summary of the main activities and achievements undertaken for the public benefit in relation to the objects continued…
Holiday award- DTC pt with lung mets non avid
Selimetry patient awarded £700 to cover travel expenses to London for trial.
Agreed to part fund the first ever PHD into Quality of life after Thyroid Cancer. A three year project with Northumbria University beginning
October 2018. Recruitment. £30k over 3 years.
Helped oncologist get Lenvima for pts for compassionate use from Esai
Letter to help pt get challenge scan
Facilitated access to earlier surgery (3 weeks) for patient who initially was told 10 weeks.
Facilitated earlier referral to Mr Tolley for surgical intervention following FNA
KF accepted position as patient representative for TC on National Cancer Research Institute (NCRI) committee
KF accepted lead patient support position for new research led by Dae Kim regarding surgical protocols for TC. ‘HOT Trial’ – Hemi Or
Total thyroidectomy
Lenvima /appeal NICE
BTCT agreed to work with TC surgeon in Sheffield commencing new multi centre research project using autofluorescence to facilitate detection of
parathyroid glandular tissue during surgery. Similar to Mr Tolley’s and Mr Palazzo’s work in London. BTCT to provide supporting letter with
patient involvement
Regency wines adopted BTCT logo on their bottles of Rose
SF completed new GDPR documentation
KF accepted position with Dae Kim NCRI research proposals Patient Advisory Group with LA and RN
Formed PAG
BAETS exec meeting 22 June
NCRI TC meeting 22 June
Abstract regarding upgrades to RAI rooms submitted and accepted for BAETS meeting2018
Recruitment process for CNS to take over the help line from KF. 18 applicants, 3 shortlisted, all of which withdrew prior to interview process.
KF and RB completed work on their chapter on patient/ doctor partnership for the book ‘Practical Management of Thyroid Cancer’ by multiple
international authors, published in 2018
Patient advocate for patient to access appropriate follow up at Newcastle
Syncona meeting and presentation. KF with James Salter in London.
KF lead on petition NHS England re NICE decision on Lenvima/Sorafanib
Re brand artwork for DVD and pt info pack. LNB to be ‘the face of Butterfly’ and to feature in new advert/ patient awareness short film
Michael Crawley award to second patient
New September awareness image sent to all CNS for Trust intranets
Partnership with Lorna Nickson Brown (LNB) for her play re her experience of her TC treatment journey. £500 paid to assist in production costs.
Two sell out nights. Intention is to tour nationally.
One of RAI rooms in NCCC dedicated to Sophie Gradon
Discussion re TC App – no follow up.
New awareness banner sent electronically to all CNS for their Trust intranet
BAETS Glasgow 2018 presentation on RAI room refurbs by Mr Peter Truran
BUTTERFLY THYROID CANCER TRUST
TRUSTEES ANNUAL REPORT
FOR THE YEAR ENDED 31ST DECEMBER 2018
Page 3c
Summary of the main activities and achievements undertaken for the public benefit in relation to the objects continued…
BAETS trustee meeting
NCRI meetings all new TC research projects:
Can we fund ALOHA? T3/T4 trial. Suggested funding should be shared between BTF and Wales organization- awaiting response
Invitation to join working party on new TC patients discharge guidelines
Initial PHD Student supervision meeting SF + Alicja Yilmaz
-
Working party ;New Guidelines for Low Risk Thyroid Cancer Patients
First telecon 29. 11 .18
KF will lead on TSH suppression.
Thyroid Cancer Project Scotland
Member working party beginning 2019
KF will be involved in surgery, oncology and RAI and survivorship
Registered with wellbeinginfo.org
Registered with paypal giving
Helped new Belfast CNS Annemarie Egan. Facilitated Introduction to Nic Armstrong, Newcastle CNS.
Assisted in face to face clinic visit at NCCR
Acted as patient advocate to get Thyrogen for a patient in Bulgaria where it is not available .
DVD is now on line Jan 2019 password protected
Abbreviations:
TSH: thyroid stimulating hormone
NCRI: national cancer research institute
NICE: national institute for clinical excellence
NCCC: Newcastle centre for cancer care
BTCT: butterfly thyroid cancer trust
BAETS: british association of endocrine and thyroid surgeons
TC: thyroid cancer
CNS: clinical nurse specialist
RAI: radioactive iodine
BTF: british thyroid foundation
TCUK: thyroid cancer UK
FNA: fine needle aspiration
ENT: ear, nose and throat
MTC: metastatic thyroid cancer
DTC: differentiated thyroid cancer
PAG: patient advisory group
GDPR: general data protection regulation
KF: Kate Farnell
RB: Richard Bliss
SF: Steven Farnell
LA: Lisa Abbs
RN: Rachel Newton
LNB: Lorna Nickson Brown
BUTTERFLY THYROID CANCER TRUST
TRUSTEES ANNUAL REPORT
FOR THE YEAR ENDED 31ST DECEMBER 2018
Page 3d
Reserve Policy
A designated fund of 200,000 relates to monies which may be awarded for ongoing research funding to be confirmed
following an annual national application process
£60,000 is earmarked for Kate Newbold's research project
£13,000 is earmarked for Glen Flux's research project
A further 20,000 to 25,000 will be required to finance a national conference in the coming year.
The balance of reserves is for the sustainability of the trust and for future projects should income not be sustained in future years.
Review of financial Postion at year end.
Signature Richard Bliss
Full Name Richard Bliss
Position Trustee
Dated 06/05/2019
Page 3e
BUTTERFLY THYROID CANCER TRUST
TRUSTEES ANNUAL REPORT
FOR THE YEAR ENDED 31ST DECEMBER 2018
Note Unrestricted Restricted Designated Total
Incoming Resources Funds Funds Funds Funds 2017
Grants 2 100,000 - - 100,000 99,256
Donations 71,533 - - 71,533 59,581
Subscriptions 305 - - 305 920
Deposit account interest 164 - - 164 153 ______________________________________________________________________
Total Incoming Resources 172,002 - - 172,002 159,910 ______________________________________________________________________
Expenditure
Direct charitable expenditure
Payroll 60,871 - - 60,871 58,000
Professional fees 21,871 - - 21,871 20,829
Telephone 1,015 - - 1,015 784
Fund raising costs 562 - - 562 562
Postage and stationery 1,253 - - 1,253 866
Insurance 494 - - 494 459
Advertising 5,090 - - 5,090 4,396
Motor & travelling costs 5,277 - - 5,277 5,446
Repairs and maintenance 1,184 - - 1,184 360
Sundries 1,757 - - 1,757 1,010
Awards 707 - - 707 500
Grants 2 - - 84,999 84,999 63,780
Conferences 50 - - 50 2,876
Phd Sponsorship 10,000 10,000 -
Depreciation 765 - - 765 766 ______________________________________________________________________
Total Expenditure 110,896 - 84,999 195,895 160,634 ______________________________________________________________________
Transfers between funds - - - - ______________________________________________________________________
Net Incoming/Outgoing Resources 61,106 - (84,999) (23,893) (724)
Total funds brought forward 232,655 - 239,529 472,184 472,908 ______________________________________________________________________
Total funds carried forward 293,761 - 154,530 448,291 472,184 ______________________________________________________________________
Statement of financial affairs for the year to 31 December 2018
BUTTERFLY THYROID CANCER TRUST
Page 4
NOTE
£ £ £ £
FIXED ASSETS
Fixtures & Equipment 3 - 765
CURRENT ASSETS
Debtors - -
Bank Accounts 448,113 471,419
Cash In Hand 178 448,291 - 471,419 ________________________________________
448,291 472,184
CURRENT LIABILITIES - - __________ __________
NET ASSETS 3 448,291 472,184 __________ ____________________ __________
FUNDS
Restricted Funds 4 - -
Unrestricted Funds 4 293,761 232,655
Designated funds 4 154,530 239,529
448,291 472,184__________ ____________________ __________
These Financial Statements were approved by the Trustees on
Date 6/5/19
Signed Richard Bliss
Full Name Richard Bliss
Trustee
Page 5
BUTTERFLY THYROID CANCER TRUST
20172018
BALANCE SHEET AS AT 31ST DECEMBER 2018
1 Accounting Policies
a. The charity constitutes a public benefit entity as defined by FRS 102. The financial statements have
been prepared in accordance Accounting and Reporting by Charities: Stament of Recommended
practice applicable to charities preparing their accounts in accordance with the Financial Reporting
Standard applicable in the Uk and Republic of Ireland (FRS 102) issued on 16 July 2014 (as updated
through update bulletin 1 publish on 2 February 2016), the Financial Reporting Standards applicable
in the United Kingdom and Republic of Ireland (FRS 102) and UK Generally accepted practice as it
applies from 1 January 2015.
The charity has applied update bulletin 1 as published on 2 February 2016 and does not include a
cash flow statement on the grounds it is applying FRS 102 Section 1A.
The Financial statements are prepared on a going concern basis under the historical cost convention.
The Financial statements are presented in sterling which is the functional currency of the charity and
rounded to the nearest pound.
The significant accounting policy's applied in the preparation of the financial statements are set out below.
These policies have been applied to all years shown unless otherwise stated.
b Funds
Unrestricted funds are available for use at the discretion of the trustees in furtherance of the general
objectives of the charity and which have not been designated for other purposes.
Restricted funds are funds which are to be used in accordance with specific restrictions imposed by
donors or which have been raised by the charity for particular purposes. The cost of raising and
administrating such funds are charged against the specific fund. The aim and use of each restricted
fund is set out in the notes to the accounts.
c All grants and voluntary income are accounted for gross when receivable, as long as they
are capable of financial measurement.
d All expenditure is accounted for gross of VAT, and when incurred.
e Provision for depreciation of fixed assets held for use by the charity is made at annual rates
calculated to spread the cost (less anticipated residual disposable value) of each asset evenly
over its expected useful life. The depreciation rates currently in use for fixed assets held for use
by the charity are 15% on straight line for Fixtures and equipment.
f Reserves policy: The trustees have considered the level of reserves needed in order to
maintain the ongoing activities of the charity. The trustees consider that an amount
representing twelve months running costs are advisable.
2a Grants Receivable
2018 2017
£ £
Syncona 100,000 -
BACIT 99,256
100,000 99,256
Details of grants are included in note 4.
BUTTERFLY THYROID CANCER TRUST
Notes to the Accounts for the period ended 31st December 2018
Page 6a
2b Grants made
£
Research Grant 40,000
Improvements to RAI rooms 44,999
84,999
3 Tangible Fixed Assets
Office Total
equipment
B/f 765 765
Additions during the period - -
765 765
Depreciation for the year 765 765
Net book value at 31 December 2018 - -
4 Funds
Transfer
Opening Incoming between Outgoing Closing
balance resources funds resources balance
Unrestricted funds 232,655 172,002 - (110,896) 293,761
Restricted funds
- - - - -
- - - - -
Designated Funds a) 239,529 - - (84,999) 154,530
a) Donations from BACIT to be used for Research Grant Award and hospital improvements.
5 Analysis of funds by assets
Unrestricted Restricted Designated Total
Fixed assets - - - -
Current assets 293,761 - 154,530 448,291
Current liabilities - - - -
293,761 - 154,530 448,291
6 Transactions with trustee's and connected persons
During the year there was no transactions with Trustees or connected persons including remuneation or expenses.
7 Trustee indemnity insurance
During the year, insurance was purchased to indemnify the committee against default on their part.
8 Control
The charity is under the control of the Trustees.
BUTTERFLY THYROID CANCER TRUST
Notes to the Accounts for the period ended 31st December 2018
Page 6b
Independent Examiner's Report to the Trustees of Butterfly Thyroid Cancer Trust
I report on the accounts of the charity for the year ended 31 December 2018 which are set out on pages 3 to 6 Respective responsibilities of trustees and examiner
The charity’s trustees are responsible for the preparation of the accounts. The charity’s trustees consider that an audit is not required for this year under section 144(2) of the Charities Act 2011 (the 2011 Act) and that an independent examination is needed. It is my responsibility to:
examine the accounts under section 145 of the 2011 Act;
follow the procedures laid down in the general Directions given by the Charity Commission under section 145(5)(b) of the 2011 Act; and
state whether particular matters have come to my attention. Basis of independent examiner's report
My examination was carried out in accordance with the general Directions given by the Charity Commission. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts, and seeking explanations from you as trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit and consequently no opinion is given as to whether the accounts present a “true and fair view” and the report is limited to those matters set out in the statement below. Independent examiner's statement
In connection with my examination, no matter has come to my attention: 1 which gives me reasonable cause to believe that, in any material respect, the requirements:
to keep accounting records in accordance with section 130 of the 2011 Act; and
to prepare accounts which accord with the accounting records and comply with the accounting requirements of the 2011 Act
have not been met; or
2 to which, in my opinion, attention should be drawn in order to enable a proper understanding of the accounts to be reached.
R D Kirk Chartered Accountant Draycott & Kirk Cleveland House 92 Westgate Guisborough Cleveland TS14 6AP Date 9/5/19
Page 2
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