Submission to the Charity Commission

2014-2015

ANNUAL REPORT

FINANCIAL ACCOUNTS

INDEPENDENT EXAMINER’S REPORT

Note that, since the Trustees opted to change the Year-end from 13th July to 30th September, these documents cover the fourteen and a

half period from 14th July 2014 to 30th September 2015.

TAR 1 September 2015

Trustees' Annual Report for the period

From

Period start date

To

Period end date

14 July 2014 30 Sep 2015

Section A Reference and administration details

Charity name Cavernoma Alliance UK

Other names charity is known by CAUK

Registered charity number (if any) 1114145

Charity's principal address Suite 4, Somerleigh Gate

Somerleigh Road

DORCHESTER

Postcode DT1 1TL

1 Names of the charity trustees who manage the charity

Trustee name Office (if any) Dates acted if not for whole year

Name of person (or body) entitled to appoint trustee (if any)

1 Ahmed Toma Existing Trustee Annual General Meeting

2 Tim Millward Treasurer/Secretary Retired wef 13 Jun ‘15 Annual General Meeting

3 Simon Temple Existing Trustee Annual General Meeting

4 David White Chair Existing Trustee Annual General Meeting

5 Emily Fletcher Existing Trustee Annual General Meeting

6 Anna Farrar Existing Trustee Annual General Meeting

7 Roxanna Dixon Existing Trustee Annual General Meeting

8 David Scott From 13 Jun 2015 Annual General Meeting

9 Karen Bennett Secretary From 13 Jun 2015 Annual General Meeting

10 Tabitha Kassem From 13 Jun 2015 Annual General Meeting

11 Peter Swinburne Treasurer From 4 Jul 2015 Board

12

13

14

15

16

17

18

Names of the trustees for the charity, if any, (for example, any custodian trustees)

Name Dates acted if not for whole year

TAR 2 September 2015

Names and addresses of advisers (Optional information)

Type of adviser Name Address

Clinical medical adviser Mr Neil Kitchen National Hospital for Neurology and Neurosurgery

Clinical medical adviser Professor Rustam Al Shahi Salman

University of Edinburgh

Name of chief executive or names of senior staff members (Optional information)

Dr Ian Stuart - Co-ordinator

Section B Structure, governance and management

Description of the charity’s trusts

Type of governing document (eg. trust deed, constitution)

Constitution

How the charity is constituted (eg. trust, association, company)

Trust

Trustee selection methods (eg. appointed by, elected by)

Elected / re-elected at Annual General Meeting Between AGMs, can be elected by the Board

Additional governance issues (Optional information)

You may choose to include additional information, where relevant, about:

policies and procedures adopted for the induction and training of trustees;

the charity’s organisational structure and any wider network with which the charity works;

relationship with any related parties;

trustees’ consideration of major risks and the system and procedures to manage them.

The Trustees decided to change CAUK’s Financial year so that it ended at the end of a calendar month, rather than in the middle as heretofore. They further decided that this should be the end of September in order to bring it as close as possible to the year-end of the Big Lottery grant, in order to simplify the financial affairs. This means that the Report and Accounts presented to the Charity Commission for this year run from 14th July 2014 to 30 September 2015, a period of roughly fourteen and a half months. Tim Millward retired as Treasurer at the AGM in June 2015 after five years, during which he steered the charity through a period of considerable change when it moved from being run entirely by volunteers to one with employees at the start of the Big Lottery grant in September 2013. Given the increase in size and complexity of the finances, the Trustees decided both to find a new Treasurer for the Board and also to appoint a paid part-time Finance Officer to take responsibility for the accounts and related matters. Peter Swinburne was elected as Treasurer and Christine Simmons appointed as Finance Officer. Karen Bennett, David Scott and Tabitha Kassem (all members of CAUK) were elected to the Board as new Trustees in June 2015. Karen was appointed Secretary to the Board, and Tabitha, a solicitor, brings us valuable legal expertise.

TAR 3 September 2015

Section C Objectives and activities

Summary of the objects of the charity set out in its governing document

(1) To promote and protect the physical and mental health of those

with cavernoma through the provision of support, education, research and practical advice;

(2) To advance the education of the general public in all areas relating to cavernoma.

Summary of the main activities undertaken for the public benefit in relation to these objects (include within this section the statutory declaration that trustees have had regard to the guidance issued by the Charity Commission on public benefit)

CAUK provides information, support and services for those with cavernomas and their carers, providing the only readily available information in the UK. CAUK creates support networks and raises awareness among medical professionals. We are a membership organisation, starting our year with 752 members and ending with 1003, an increase of 251 over the 14.5 months, an average of about 4 new members per week. Of these, 204 (81%) were from the UK and 47 (19%) from elsewhere. Our members, and others who use our services, range from the parents of babies/young children who have been diagnosed to adults of all ages. We have continued to provide: • Individual advice and support (via the internet, email, phone,

letter, or face-to-face) • Information Leaflets – covering a range of issues that those

diagnosed with cavernoma most commonly want to know • Annual Forum – an opportunity to meet each other and medical

professionals and share information and experiences • CaverHubs – regional community events • London CaverClinic - for those with cavernomas to meet 1:1 with

medical experts • CaverChat, Facebook and Twitter – on-line discussion amongst

members • Membership list – a vital resource to connect members with similar

challenges • Research – extend knowledge about cavernomas • Medical community – raising awareness of the condition amongst

the medical community • CaverBuddies – a one-to-one relationship between new and

experienced members • CaverFamilies – a group for all families who have children with

cavernoma. CaverFamilies evolved from the Residential Weekend in Butlins, Skegness in 2013, and provides a programme of activities and other features.

MEETINGS AND EVENTS The 2015 CAUK International Forum This was held on 13 June at The Holborn Grange Hotel as in previous years. Members heard talks from Dr Jonathan Berg (Honorary Consultant in Clinical Genetics, Ninewells Hospital Dundee) on “The Importance of Genetics In Clinical Management” and from Dr Tim Wehner, Consultant Neurologist and Clinical Neurophysiologist at the National Hospital for Neurology and Neurosurgery (NHNN) on “Epilepsy in People with Cavernoma”. This year we had two Clinical Discussions, one on Psychological Effects of Cavernoma led by Dr Ronan Burke from NHNN and Anna Farrar

TAR 4 September 2015

(Trustee) and the other Preimplantation Genetic Diagnosis, Pregnancy And Cavernoma led by Alison Lashwood (Guy’s Hospital) and Professor Catherine Nelson-Piercy (St Thomas’ Hospital). There were also five workshops from which members chose two: Pat Spallone and Ytje “A Taster Session on Mindfulness Based Approaches”; Roxanna Dixon “Incidental And Asymptomatic Cavernoma”; Roxanna Dixon “Expert Patient Programme - Chronic Disease Self-Management Course”; Emma Ramsay “Cavernoma Symptoms”; Emily Fletcher and Gabby Farrar “Cavernoma And Surgery”; Cathryn Shilling “Spinal Cavernomas” We held three meetings (in Birmingham, Sheffield and London) and an awareness-raising event in Newcastle, during the Dana Alliance New York’s Brain Awareness week. We also held an Autumn London CaverHub. CAVERFAMILIES

Our CaverFamilies go from strength to strength.

In March 2015, we held our first ‘Study Day’ in Manchester. Five clinicians [Dr. Grace Vassallo (paediatric neurologist), Mr. Ian Kamaly (paediatric neurosurgeon), Dr. Amit Herwadkar and Dr. Stavros Stivaros (neuroradiologists) and Dr. Elizabeth Jones (clinical geneticist)] gave presentations followed by discussion, whilst the children were entertained in a separate room. We held our third residential weekend, at Butlins Skegness again for 11 families over the August Bank Holiday weekend. In October 2014 we held a CaverHub for CaverFamilies in London. As requested in the Survey of CaverFamilies that we undertook in the Spring of 2014, the artist and writer from Dinosaurs for All who came to the residential weekend in 2013, wrote and illustrated two booklets for children, one for youngsters up to the age of 11 and the other for teenagers. These were published in the summer and distributed to CaverFamilies. This initiative was funded by the Hedley Foundation. INFORMATION This year has seen a major effort into improving our visibility and the information we provide. New Website: We developed a completely new web site during the year, giving this a more modern feel with much greater use of images and ease of access to information. See www.cavernoma.org.uk Logo: At the same time we changed our logo, based on the old one, but with a contemporary design. Information Booklets: We took the opportunity presented of running out of our store of leaflets and information booklets to redesign and update these, and introduce the two new booklets for children described above. We now have five high-quality information booklets which we provide free to new members. a. The genetics of brain cavernomas b. Symptomatic brain cavernomas c. Incidental brain cavernomas d. CaverFamilies: Talking about cavernoma with Children e. Cavernoma Information for young people

TAR 5 September 2015

A major undertaking has been the production of two DVDs, a completely new venture. One of these, for adults and older children, is an interactive DVD with an introduction to cavernoma from our two medical advisers and patrons, Mr Neil Kitchen (consultant neurosurgeon at NHNN) and Professor Rustam Al-Shahi Salman (Professor of Clinical Neurology at the University of Edinburgh) and a set of interviews with members describing their experiences of living with cavernoma. A non-interactive version of this DVD is on the home page of our new website. The other DVD, for young children, is an animated version of the Information Booklet for young children. We have also designed and produced a set of attractive Cavernoma Information Folders to hold and present our booklets, video plus a Personal Information Booklet for members. This pack is given to all new members free, and is available to anyone on request. We will be circulating this to clinicians who treat patients with cavernoma. CAVERCENTRES A significant activity in our Five-Year Development Plan has been to introduce regional CaverCentres, run by volunteers with help from the Cavernoma Community Worker, Angie Yeomans. The first of these to be established is in Liverpool with clinical support from medical staff at the Walton Centre. INTERACTIONS WITH CLINICIANS In order to increase our visibility with clinicians, Ian Stuart and Angie Yeomans have attended the following meetings of professional medical societies, with a stand displaying our wares: British Society of Neuroradiologists, British Association of Neuroscience Nurses, Society of British Neurological Surgeons and the British Neurovascular Group. Ian Stuart and Simon Temple (Trustee) attended the scientific meeting of Angioma Alliance in Washington DC USA. Cavernoma Priority Setting Partnership (PSP) A PSP is a means of identifying the most important research questions (‘treatment uncertainties’) for a particular disease or affliction. The Cavernoma PSP was launched in July 2014, and this year has completed its activities to determine the top-10 research questions. An initial survey of members and clinicians solicited 2288 potential questions from 299 respondents. These were reduced to a longlist of 57 different questions in 8 categories. A second survey ranked these producing a shortlist of 27 questions, and the final prioritisation was undertaken in a workshop on 23rd September 2015. The resulting prioritised list will now be entered onto the UK Database of Uncertainties about the Effects of Treatments (DUETS) maintained by the National Institute for Care and Clinical Excellence (NICE), and publicised with articles in the scientific literature and elsewhere. The above all comply with the guidance issued by the Charity Commission on public benefit.

TAR 6 September 2015

Additional details of objectives and activities (Optional information)

You may choose to include further statements, where relevant, about:

policy on grantmaking;

policy programme related investment;

contribution made by volunteers.

In addition to the above delivery of CAUK’s objects, the charity has also invested effort in developing its internal information systems, and with the appointment of Christine Simmons as finance Officer has improved its finance record keeping and how this is presented to the Trustees.

TAR 7 September 2015

Section D Achievements and performance

Summary of the main achievements of the charity during the year

CAUK’s main achievements this reporting year have been:

1. CAUK Forum with 105 attendees; 5 CaverHub or Brain Awareness Week meetings in Birmingham, Newcastle, Sheffield, London x2; CaverFamilies events (Manchester Children’s Hospital with 5 clinicians for a day with 14 families, a residential weekend and CaverHub in London); 2 CaverCentre meetings.

2. The help and support that we have given to the 251 new members who have jointed CAUK over the 14.5 months of this report. This is an increase of a third, and a major part of our work is providing this support to individuals (largely unseen to others) who have just been diagnosed with cavernoma.

3. 131 members posted on CaverChat (995 posts in 86 threads). 103 Facebook members; 105 Twitter followers

4. We have developed a new website, and rebranded ourselves. We had 17,160 visits to the old website (Sep-Sep) of which 1,335 were from ‘NHS’.

5. Produced two DVDs.

6. Two new children’s booklets (<11 / teenagers). New editions of our 3 Information Booklets.

7. Priority Setting Partnership with clinicians.

8. Designed training programme for CaverBuddies

9. Attended professional meetings: SBNS x2, BANN, BNVG and Angioma Alliance (US).

10. We engaged in non-trivial ways with 47 medical professional (c.15 new this year). We contacted 65 neurologists.

11. We had 19 significant media mentions / published articles.

12. Updating our 5-year Strategic Plan which provides a coherent route to meeting health needs.

Section E Financial review

Brief statement of the charity’s policy on reserves

The Charity's policy on reserves is to retain 6 months of annual general charity operating costs and 3 months of Big Step annual operating cost as an unrestricted reserve. Based on budgets for 2015/16 the amount of this reserve is calculated to be £48,532. The actual unrestricted reserve as at 30 September 2015, and included in the accompanying accounts, was £48,476 which is in line with the Charity's policy.

Details of any funds materially in deficit

None

TAR 8 September 2015

Further financial review details (Optional information)

You may choose to include additional information, where relevant about:

the charity’s principal sources of funds (including any fundraising);

how expenditure has supported the key objectives of the charity;

investment policy and objectives including any ethical investment policy adopted.

The five-year Big Lottery grant continues to be our major single source of funds, providing salaries for three part-time staff as well as running costs for an ambitious development programme. Extending the period of this report has resulted in two annual reports to Big Lottery. We are very grateful to the following for their generous grants awarded during this reporting period:

The Lothian Health Board Endowment Fund and the National Hospital Development Foundation for grants of £3,000 each for the Cavernoma Priority Setting Partnership;

The Hedley Foundation for a grant of £1,500 to write and publish booklets for children

The Alice Ellen Cooper Dean Trust for a grant of £4,000 to produce a new edition of our three information booklets and our information leaflet

In January 2015 we employed a Fundraiser and Development Officer on a one-year contract.

Section F Other optional information

Section G Declaration The trustees declare that they have approved the trustees’ report above. Signed on behalf of the charity’s trustees

Signature(s)

Full name(s) David Clifford Stephen White Peter Swinburne

Position (eg Secretary, Chair, etc)

Chair Treasurer

Date 24 November 2015

Section A Receipts and payments

Unrestricted

funds

Big Step

Restricted

funds

Other restricted

fundsTotal funds Last year

to the nearest £ to the nearest £ to the nearest £ to the nearest £ to the nearest £

A1 Receipts Fundraising and donations 58,722 - 12,289 71,011 59,184

Grants - 46,671 11,500 58,171 60,311

Other income 2,153 - 363 2,516 2,165

Interest 381 - - 381 117

- - - - -

- - - - -

- - - - -

- - - - -

Sub total (Gross income for

AR) 61,256 46,671 24,152 132,079 121,777

A2 Asset and investment sales,

(see table).

- - - -

- - - - -

Sub total - - - - -

Total receipts 61,256 46,671 24,152 132,079 121,777

A3 PaymentsSalaries,Ni and pensions 23,435 37,144 - 60,579 25,877

Recruitment 1,990 - - 1,990 1,943

General Running expenses 5,230 4,304 800 10,334 4,571

Training - 542 - 542 553

Travel 5,723 7,594 - 13,317 6,402

Consultancy & advice (inc evaluation) - 2,931 - 2,931 83

Other-regional hub development 101 4,146 - 4,247 1,511

Other -HR support / Payroll admin 467 1,053 - 1,520 -

Annual Conference costs 5,672 - - 5,672 5,414

Welfare Fund -designated amounts 240 - - 240 82

Welfare Fund -restricted amounts - - 7,321 7,321 3,090

Children's hubs 7,836 - - 7,836 4,390

Fundraising costs 6,649 - 1,500 8,149 6,031

PSP project - - 11,611 11,611

Event & Awareness Costs 588 301 446 1,335

Accommodation 3,769 4,629 - 8,398 5,721

Utilities 979 1,295 - 2,274 1,344

Other costs -insurance 283 141 - 424 546

- - -

Office equipment 1,896 199 - 2,095 2,314

Sub total 64,858 64,279 21,678 150,815 69,872

A4 Asset and investment

purchases, (see table)

- - - -

- - - -

Sub total - - - - -

Total payments 64,858 64,279 21,678 150,815 69,872

Net of receipts/(payments) -3,602 -17,608 2,474 -18,736 51,905

A5 Transfers between funds -11,831 6,400 5,431 - -

A6 Cash funds last year end 63,909 13,939 18,614 96,462 44,557

Cash funds this year end 48,476 2,731 26,519 77,726 96,462

Charity Name No (if any)

CC16a

Cavernoma Alliance UK 1114145

Receipts and payments accountsFor the period

from

Period start dateTo

Period end date

14-Jul-14 30-Sep-15

CCXX R1 accounts (SS) 1 25/11/2015

Section B Statement of assets and liabilities at the end of the period

Categories

Unrestricted

funds

Big Step

restricted

funds

Other

restricted

funds

to nearest £ to nearest £ to nearest £

27,701 2,731 -

20,775 - 26,519

- - -

48,476 2,731 26,519

OK OK OK

Unrestricted

funds

Big Step

restricted

funds

Other

restricted

funds

to nearest £ to nearest £ to nearest £

- - -

- - -

Fund to which

asset belongsCost (optional)

Current value

(optional)

B3 Investment assets - -

- -

- -

Fund to which

asset belongsCost (optional)

Current value

(optional)

Big Step fund - -

Big Step fund - -

Big Step fund - -

Big Step fund - -

Big Step fund - -

unrestricted fund - -

unrestricted fund - -

unrestricted fund - -

unrestricted fund - -

Fund to which

liability relates

Amount due

(optional)

When due

(optional)

B5 Liabilities -

-

-

Signed by one or two trustees on

behalf of all the trustees Date of

approval

(agree balances with receipts and payments

account(s))

Details

B1 Cash funds Current accounts

Deposit accounts

Total cash funds

NOTE: The Charity's policy on reserves is to retain 6 months of annual general charity operating costs and 3 months of

Big Step annual operating cost as an unrestricted reserve. Based on budgets for 2015/16 the amount of this reserve is

calculated to be £48,532. The actual unrestricted reserve as at 30 September 2015, and included in the above accounts,

was £48,476 which is in line with the Charity's policy.

Details

B2 Other monetary assets

Details

Details

B4 Assets retained for the

charity’s own use

HP notebook computer

2 NEC computer monitors

Bookcase, desk and filing cabinet

5 Chairs

3 Lenovo Laptop computers

3 office cupboards

I desk

2 Chairs

Samsung netbook

DCS White

P Swinburne

Signature Print Name

Details

CCXX R2 accounts (SS) 2 25/11/2015

IER March 2012

1

Independent examiner's report on the accounts

Section A Independent Examiner’s Report

Report to the trustees/ members of

Charity Name

Cavernoma Alliance UK

On accounts for the period

14 July 2015 to 30 September 2015 Charity no (if any)

1114145

Set out on pages 1 and 2 of Receipts and payments accounts form CC16a (remember to include the page numbers of additional sheets)

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 of the Charities Act 2011 (the Charities Act) and that an independent examination is needed. It is my responsibility to:

examine the accounts under section 145 of the Charities Act,

to follow the procedures laid down in the general Directions given by the Charity Commission (under section 145(5)(b) of the Charities Act, and

to state whether particular matters have come to my attention.

Basis of independent examiner’s statement

My examination was carried out in accordance with 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 the 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 Charities Act; and

to prepare accounts which accord with the accounting records and comply with the accounting requirements of the Charities 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.

Signed: Date:

Name: I M Carrington MA FCA

Address: Edwards and Keeping, Chartered Accountants

Unity Chambers, 34 High East Street, Dorchester, Dorset DT1 1HA