butterfly thyroid cancer trust

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


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.

a


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




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




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




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




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


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


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.


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.


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

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