Annual Report 2017

SBH . There for the journey. Just new to the centre and Staff so helpful and I have been made very informative, great support welcome by everyone, very always, can't thank supporting and friendly, everyone involved enough kids love going.” for all their help.” Contents Welcome

Welcome ...... 3 Spina Bifida Hydrocephalus Scotland (SBH Scotland) provide a lifetime commitment of specialist support and information to all Chairperson’s Report ...... 4 those affected by these lifelong, complex disabilities including Achievements and Performance ...... 6 family members, carers and healthcare professionals. Life Changing Support...... 9 Created in 1965 by parents, for parents and their children, over 50 Focusing on Finances ...... 12 years later we’re now a national charity with individuals remaining at the heart of everything we do. Building Confidence and Independence. ...14 SBH Scotland’s Direct Services Support Team work across Scotland to Did You Know? ...... 16 support over 4,000 individuals with a range of services including: Fundraising ...... 18 a helpline, one-to-one support in homes and schools, combined clinics Summarised Accounts...... 22 in hospitals, support groups, financial advice, play sessions, outings and workshops. Thanks...... 24 All of our services are completely free to members and with little statutory funding we are indebted to grant making bodies, individuals and companies who allow us to support all those who ask for our help. Thank you for your support and for taking the time to find out more about us in this annual report.

Page 2 SBH Annual Report 2017 SBH Annual Report 2017 Page 3 Chairperson’s Report

After a busy year of fiftieth anniversary celebrations and a start in life. Whilst our projects meaningful, specialist support. rebrand in 2015/16 I’m pleased that our new name of Spina Bifida vary slightly across different We are incredibly grateful and Hydrocephalus Scotland is becoming firmly established across regions we remain committed ask you to carry on that support Scotland and as a result we have welcomed many new members to the Scottish Government’s and help us raise awareness so who have spina bifida or hydrocephalus as their sole condition. ‘Getting It Right For Every Child’ that we can continue to increase (GIRFEC) approach, and have our assistance in line with the This year has certainly been just for members of all ages and adopted a proactive, early increased number of members as exciting as the last and I am recognised the significant intervention strategy now offering we help and the growing energies which SBH Scotland proud that all the efforts of our more personalised, early years numbers of services critically has put into the development dedicated team of staff at SBH support than ever before, which required. of an Early Years programme for Scotland were recognised by the is such a vital step in creating young members aged 0 - 12. Together we can make a genuine Charity Champion Awards 2016 positive futures for our members. Our organisation’s experience is difference. Thank you. when we were awarded several that the quality of life achieved With little statutory funding, awards including National Charity by an adult with complex needs all of our work is only possible Dr Margo L Whiteford CBE of the Year and runner up of is very dependent on the quality because of the generosity of Disability Charity of the Year. of support that they, and their grant making bodies, companies, The awards acknowledged carer(s), receive during their early volunteers and individuals who SBH Scotland’s extensive years. We want to make sure that give their time, money and efforts Chairperson range of services and projects every child has the best possible freely to enable us to provide

Page 4 SBH Annual Report 2017 SBH Annual Report 2017 Page 5 Achievements and Performance Chief Executive’s Report

The Strategic Development Plan for SBH Scotland focuses first and Notable Achievements foremost on the sustainability of existing services followed by a commitment to targeted service development for potential and existing SBH Scotland was delighted to host the Society for Research into Hydrocephalus and Spina Bifida (SRHSB) International members across Scotland. Income generation is the key factor in being Conference in Stirling in June 2016. This was an important year able to deliver on these objectives and over the past year to March for the conference, marking the Society’s 60th Anniversary. The 2017, we can positively report that income generation exceeded the event provided a unique opportunity to showcase our work to an projections agreed for the period. international audience of clinicians and scientists with a specific The direct services support within Scotland has increased significantly interest in neural tube defects and to welcome them to our and a new regional structure has been tested during the year to national family support centre, the Dan Young Building in Dullatur. address and support regional variations in service expectations and The organisation continues to be represented on national and service delivery. Designated teams in the North, East and West are now international groups who have a particular interest in spina bifida focused on delivery of a wide range of quality services to an increasing and related conditions and to enable service users voices to be number of members. heard in policy matters and service delivery.

The provision of high quality services relies on experienced staff. For Success in securing specific funding has led to the appointment this reason, the Remuneration Committee has revised the current of two new Finance Support Workers to support individuals and grading structures for direct services support staff and revised award families in navigating the new welfare benefit system, supporting systems for administrative and appeals staff. All of these strategies grant applications and offering financial advice. being necessary as a means of ensuring retention of staff in an At the turn of the new year we celebrated the recognition of our increasingly competitive market. Chairperson who was recognised in the New Years Honours List

Page 6 SBH Annual Report 2017 SBH Annual Report 2017 Page 7 by Her Majesty the Queen. Dr Margo Whiteford received the CBE for her services to charity and health. Finally, we are proud of the number of projects developing in partnership with the University of Edinburgh. Through these we are able to research the extent to which digital media can enhance self-management and well being and innovation funding is focusing on early learning and child development to ensure our younger service users have the best chance to succeed and be the best they can be. Future Plans The Board has approved the appointment of a specialist nurse who will take forward a new wellness clinic for our adult service users. The Board has also agreed to set up a Clinical Governance Life Changing Support Committee to oversee the increasing range of clinical services now on offer. Stronger Links: Stronger Families Work is underway to secure funding to extend our work in the east of Scotland and early discussions are focusing on continuing When Spina Bifida Mika Burke has spina bifida and our work of recent years around transition services for teenagers Hydrocephalus Scotland hydrocephalus which, for her, and support for families through the Stronger Links: Stronger (SBH Scotland) launched means she is mobile but has to Families project. Stronger Links: Stronger wear splints and occasionally use Discussions are still ongoing regarding a potential extension to Families (SLSF) in 2014, thanks a wheelchair. Her hydrocephalus also causes some issues with the current Family Support Centre. Whilst a strong business case to funding from the Big Lottery attention and learning. SBH has been presented there is still considerable work to be done to Fund, one of the first families Scotland got in touch with her ensure best value for money before a final commitment is made. to get involved were the Burkes and her family when she was six from Kirkcaldy, Fife. years old to see what issues they Andrew H D Wynd MBE were dealing with and to find out

how best this Lottery Chief Executive

Page 8 SBH Annual Report 2017 SBH Annual Report 2017 Page 9 funded project could help and Fife areas who have a the school should be training support those needs. child between the ages of support staff to catheterise 0-9 with spina bifida and/or Mika rather than Pauline One of the key issues for the hydrocephalus. having to travel to the school family was feeling isolated from twice a day to do it. others who are dealing with the The project offers tailored same disabilities. Since her birth support packages to families Pauline said, “Fiona is there any Mika’s parents, Pauline and Paul, from dedicated support workers time we need her, we just have to had never met any other people meeting on a one to one basis phone and she’ll help in whatever living with disabilities and Mika and also attending hospital way she can. She’s brought in had never met another child with visits, liaising with teachers at with her knowledge we didn’t early spina bifida or hydrocephalus. At school meetings and providing have about Mika’s conditions; six years old she had started to advice and support at medical for instance her teachers would from playing ask “Why am I so different?” appointments. The project has often complain of Mika’s lack outside to catheterise or go also enabled the launch of a new of attention in class which we through a bowel management SLSF has been able to provide support group in Fife and a family didn’t realise was because of her regime. early years services to families in conference at Crieff Hydro. hydrocephalus. Because of this the Edinburgh, Lothian, Borders Pauline continues, “We never information the teachers now After speaking with the Burkes, have a better understanding of knew there was anyone else Fiona, the SBH Scotland Support how Mika processes information.” affected in the area and then we Worker could immediately see found out there was someone how she could support the The new Fife group is also a within the same town. To be family and over the past fantastic resource for the Burkes, able to meet other families at two years she has been who have been able to socialise the groups and conference has involved giving talks and with others from the local area been amazing. It’s nice to speak advice to Mika’s school, and gain support from the other to other people who understand attending meetings families who are all facing the with Pauline for Mika’s same problems. For Mika it you and what you go through co-ordinated support was life changing as she got to every day. Mika loves going to plan, and giving Pauline meet other children just like her; the group, she’s made friends some of her time back people who were also taken out and doesn’t feel so different by suggesting that from class early or had to come anymore.”

SBH Annual Report 2017 Page 11 Focusing on Finances Vital service gives a boost to families

We read daily about the effects of disability cuts on the UK months in this financial year population and with recent reductions in Employment Support 2016/17, yet Tracy and Noreen Allowance (ESA) and the massive upheaval of Disability Living are our financial Support Workers Allowance (DLA) to Personal Independence Payments (PIP) there have secured £173,843 in in financial gains was has never been a greater need for financial support for our members. financial gains for 94 individuals achieved for our families by and families. In August 2016 we were grateful disabled such as buying insurance our Finance Support Workers to receive funding for two years or holidays. Tracy and Noreen keep our between August 2016 to members up-to-date on financial March 2017 from The Bank of Scotland Grants are available to some and information, benefits and funding Foundation to fund a Financial the government have benefits streams alongside helping Support Worker dedicated to available but our members tell members feel more confident supporting families with children us there’s a lack of knowledge managing their finances effectively. and young people aged 0-25 years about what’s available, a lack Through phone calls, meetings or families and individuals old and we also received funding of understanding about the home visits they have been talking received financial support from a funder who prefers to application processes and through finance and budgeting and advice from our remain anonymous, for a Financial timelines. The forms can also be plans, checking individuals are Financial Support Workers Support Worker who will work with incredibly complex without clear receiving all the entitled benefits, our adult members or their carers. indications of the information speaking with food banks, assisting required. This is where SBH Having a disability can have a with form filling and helping to Scotland Financial Support huge financial impact on your maximise income. life, from parents choosing to give Workers are critical in bridging of finance project families up work to be full-time carers, the inequalities faced by those If you think you could benefit enquired about grants for specialist equipment, home living with spina bifida and/or from this service, please specialist equipment such adaptations to the general higher hydrocephalus. call 03455 211 300 or email as wheelchairs and Zipzacs cost of living and additional This free and confidential finance [email protected] charges applied because you’re service has run for only seven

Page 12 SBH Annual Report 2017 SBH Annual Report 2017 Page 13 Building Confidence and Independence Remote and Rural

The north of Scotland and the you can go and what accessibility one-to-one personalised support The observational change will be available. Highlands are spectacular on a regular basis, identifying in mood and self-belief for places but for those with a low Thanks to funding from BBC potential barriers to social and those who, for example, incidence disability they can be Children in Need, SBH Scotland leisure activities and by teaching climbed a tree was compelling quite isolating regions as there embarked on a project, SEA new self-management skills. The and was a powerful catalyst are few (if any) people living Change North, to address the project supported 23 children and for growth in the young with the conditions within an inequalities faced by children young people and it culminated people even if they hadn’t easy travelling distance to you. and young people living in in a successful outdoor activities considered themselves to be particularly ‘outdoorsy’.” And for those relying on public these areas and to see how we residential trip to Lagganlia in transport to get about there are could build their confidence and Kingussie, Perthshire, without Sophie Teear, SBH Scotland very limited options as to where independence through more their parents and carers. Direct Services Manager, North. Page 14 SBH Annual Report 2017 SBH Annual Report 2017 Page 15 Did You Know Fundraising Support In every All our support

9601 is free to our £1000 donated goes directly into could help towards a SBH Scotland contacts were made members providing support services with members Support Worker providing a weekly, one-to-one play and learning session for a child with spina bifida and/or hydrocephalus 52905 Support is 99% offered across all of teaching staff 4000+ 32 Scottish local sessions took place attending our individuals were authority areas on our website school talks learnt offered support something new £200 could go towards 100% towards 10 young subsidising a people to enjoy an holiday for a evening bowling or family affected by combined clinics 3142 school/nursery similar social activity took place in mobility issues at of people surveyed said visits with families talks were to help reduce Aberdeen, Glasgow our adapted respite they enjoyed their stay and individuals presented social isolation at Rebecca Cottage and Edinburgh took place holiday cottage

Page 16 SBH Annual Report 2017 SBHSBH AnnualAnnual ReportReport 20172017 Page 17 Fundraising

SBH Scotland’s annual income streams are budgeted Christmas concert and music CD operational costs were raised including trusts and foundations, produced and sold worldwide. through an in-house fundraising special appeals, community Artistic contributions were team of six people. In 2016/17 fundraising, sponsored challenge received from many talented and demonstrates the we achieved the income target and running, corporate musicians across the UK, close synergy between the which was budgeted and overall partnerships and social/corporate including those with a global fan families we support and our saw an increase in fundraising events. With a limited marketing base such as Travis, Ricky Ross fundraising activities. income. This can mainly be budget the majority of SBH and Justin Currie himself. The We also focused on developing attributed to the impact of Scotland’s fundraising successes entire project raised over £50,000 increased communications were achieved via networking and continues to raise funds charity of the year corporate by SBH Scotland, increased and personal approaches and through CD/download sales. partnerships. As a low direct service provision and a notable achievements in 2016/17 The project was started from incidence condition we have fundraising focus on partnerships included a very special music a relationship between Justin historically found this income and community sponsored fundraising venture between the Currie (band member of Del stream challenging and to events. Del Amitri fan club and ourselves. Amitri) and one of our families help address this, the team Every year income from over 33 This venture culminated in a directly affected by spina bifida, took part in the “Beyond Me”

Page 18 SBH Annual Report 2017 SBHSBH AnnualAnnual ReportReport 20172017 Page 19 Loch Katrine Kiltwalk Sponsored Walk

Tesco Scottish AwardsEntertainment project and partnered with new supporter base by effectively This year was the first time support services and full list PriceWaterhouseCoopers who using social media and free that the charity had managed is enclosed at the end of the helped us review our unique communication channels to to successfully apply for accounts. selling point and create a statutory funding from the recruit over 200 people to zip We rely on those who support corporate pack and pitch. After Scottish Government when we slide over the Clyde, bungee jump the generosity of individuals, secured three years of Scottish building relationships we were in Perth, and abseil from the companies, volunteers, trusts and Government funding from the delighted to create notable Falkirk Wheel. The rise in income grant making bodies to continue Children, Young People and partnerships including a ‘charity from community challenge our work and through each year Families Early Intervention Fund. of the year’ partnership with our events was also reflected in our we remain grateful to all those Further funding was also secured local Tesco (Craigmarloch), Peter who support us and take the time first ever sponsored walk, the from the Children, Young People Vardy and nominated status to find out more about us and the ‘13 mile Loch Katrine Challenge’ and Families Early Intervention at the Scottish Entertainment see the difference they can make and also our participation in Fund project fund for innovation. Awards. to the lives of our members. the Kiltwalks across Glasgow, Additional income was also Thank you. SBH Scotland’s in-house Edinburgh, and Aberdeen. We generated by the team via fundraising events across hope to develop relationships applications for restricted Deborah Roe Scotland continued with our with the new donor base and projects which deliver time Ladies Lunch, Golf Day and Burns encourage future fundraising. limited specialist services that Director of Fundraising Supper, and we reached out to a complement our core family

Page 20 SBH Annual Report 2017 SBHSBH AnnualAnnual ReportReport 20172017 Page 21 2017 2016 £ £ Summarised Accounts Balance Sheet - As 31 March 2017 Fixed assets For Year ending March 2017 Tangible assets 766,178 773,144 Investments 211,258 191,107 977,436 964,251 Current assets Debtors 102,751 147,618 Total Total Unrestricted Restricted Expendable Funds Funds Cash at bank 685,416 755,428 Funds Funds Endowment 2017 2016 £ £ £ £ £ 788,167 903,046 Income and Endowments Creditors: Amounts falling due within one year (210,925) (199,998) From

Donations and legacies 282,095 - - 282,095 237,018 Net current assets 577,242 703,048 Charitable activities Total assets less current liabilities 1,554,678 1,667,299 Supporting those with spina bifida & hydrocephalus 29,479 418,573 10,000 458,052 272,066 Pension Liability (248,000) (248,000) Other trading activities 397,623 - - 397,623 367,295 Investment income 3,722 2,707 - 6,429 6,422 Net assets 1,306,678 1,419,299

Total 712,919 421,280 10,000 1,144,199 882,801 Unrestricted Funds 417,646 534,601 Expenditure on Restricted funds 122,854 111,554 Raising Funds 288,461 - - 288,461 326,158 Endowment Funds 766,178 773,144 Charitable activities Total Funds 1,306,678 1,419,299 Supporting those with spina bifida & hydrocephalus 506,289 426,534 44,114 976,937 663,444

Total 794,750 426,534 44,114 1,265,398 989,602 Net gains/(losses) on investments 8,996 11,582 - 20,578 (3,527) Statement by the Trustees Net Income/(Expenditure) (72,835) 6,328 (34,114) (100,621) (110,328) These summarised accounts are of the financial affairs of the Transfers between funds (32,120) 4,972 27,148 - - an extract from the full annual charity. statutory accounts for the Other recognised gains/(losses) The full annual statutory accounts financial year ended 31 March Actuarial gains/losses on defined benefit schemes (12,000) - - (12,000) (42,000) and the auditors’ report on 2017 which have been audited by Net movement in funds (116,955) 11,300 (6,966) (112,621) (152,328) those accounts and the report Hardie Caldwell LLP, who gave an of the trustees may be obtained unqualified audit report. Reconciliation Of Funds from The Dan Young Building, 6 Total funds brought forward 534,601 111,554 773,144 1,419,299 1,571,627 These summarised accounts may Craighalbert Way, not contain sufficient information G68 0LS. to gain a complete understanding Total Funds Carried Forward 417,646 122,854 766,178 1,306,678 1,419,299

Page 22 SBH Annual Report 2017 SBH Annual Report 2017 Page 23 Michael and Anna Wix The Cruden Foundation  Thanks Charitable Trust The Gannochy Trust Miss A M Pilkington Charitable Trust The Hoover Foundation We are indebted to all those who have continued to support Spina Bifida Miss E C Hendry’s Trust The Mickel Fund Hydrocephalus Scotland through 2016/17. Individual donations, trusts, Miss Isabel Harvey Charitable Trust The Nancie Massey Charitable Trust grant making bodies, legacies and companies are the beating heart of our Mrs Williamina McLaren’s Trust Fund The Northwood Charitable Trust organisation – enabling us to ensure that all those affected by the life-long Mugdock Children’s Trust The RS Macdonald Charitable Trust complex disabilities of spina bifida and/or hydrocephalus lead fulfilling and Noble Resolve Gospel and The Sylvia Adams Charitable Trust independent lives. Whilst we don’t have space to list everyone who has Temperance Auxilliary Thistledown Trust donated please be assured we are very grateful to each and every one of you. Northwood Charitable Trust W M Sword Charitable Trust Peter Brough Bequest Fund Ward Family Charitable Trust Trusts Crerar Hotel’s Trust Peter Vardy Foundation Yorkshire & Clydesdale Bank A&S Lass Charities Dalziel Trust R J Larg Charitable Trust Foundation Aberdeen Charitable Foundation - David Solomons Charitable Trust Robertson Trust One Trust which prefer to remain Aberdeen Asset Management Dr J N Marshall - Isle of Bute Robin Charitable Trust anonymous Memorial Trust Rotary Club of Rutherglen Mory ACT Foundation Legacies DWT Cargill Fund Wilson Trust Alexander Moncur Trust Mr George Henzell Henderson Edinburgh & Lothians Health Santander Foundation Anne Jane Green Trust Ms Margaret Wilson Apache Corporation Foundation Scottish Power Foundation Appletree Trust Edinburgh Children’s Holiday Fund Shared Care Scotland Better Grants (including local authority Baily Thomas Charitable Fund Gamma Trust Breaks Fund income) Sir Gerald Elliott / Binks Trust Bank of Scotland Foundation Getrude Pattullo Trust Council Sir Jules Thorn Charitable Trust Barbara Ward Children’s Foundation Hobson Charity Scottish Government STV Appeal Barnabas Trust Hospital Saturday Fund Corporate Support Talteg Limited Barrack Charitable Trust Hugh and Mary Miller Bequest Air Space East Kilbride Tay Charitable Trust BBC Children in Need Hugh Fraser Foundation Applebank Inn Templeton Goodwill Trust Bellahouston Bequest IBB Trust Arnold Clark Tesco Bags of Help Big Lottery Fund James Tudor Foundation ASDA Alloa The Adamson Trust Bruce Wake Charitable Trust JTH Charitable Trust Auchrannie Resort The Alliance Children’s Aid Scotland Leith Benevolent Association Aviva The Austin and Hope Pilkington Trust Colin Grant Charitable Trust Leng Charitable Trust Bank of Scotland Foundation The Cameron Whiteford Commonweal Fund Lloyds TSB Foundation Barratt West Scotland Charitable Trust

Page 24 SBH Annual Report 2017 SBH Annual Report 2017 Page 25 Bogleha Bowling Club Momentum Scotland The Woodcutter Brenda Wilson Carr Berman Crichton Solicitors Multi Packaging Solutions Tom Toms (Appointed September 2016) Chisholm Hunter New College Lanarkshire Vision Outsourcing Limited Cole Advertising & Design Newbattle Golf Club Ladies Section Waitrose - Newton Mearns Chief Executive and Company Cooper Cromar Newton Property Managment Waitrose - Glasgow Byres Road Secretary Craighalbert Christian Fellowship Nexen Petroleum U.K. Limited William Hill Andrew H D Wynd MBE MIoD Cumbernauld Ladies Probus North Lanarkshire Leisure Ltd Honorary Patron Senior Management Team Curtis Moore Order of the Eastern Star - Gordon Ramsay OBE Andrew H D Wynd MBE MIoD Chapter 630 Del Amitri fans Deborah Roe Paramount Creative Patron Dounby Community School Lorraine Wilson Peter Vardy Foundation Duncan Bannatyne OBE Excellimore Ltd Clare Cogan Turner FBD Consultancy (Scotland) Ltd Peterson LTD Ambassadors Sophie Teear Fratelli Sarti Porrelli John Amabile Glasgow Caledonian University Premier Oil Auditors Nicola Cassells Gleaner Oils Ltd PricewaterhouseCoopers LLP Hardie Caldwell LLP Meggan Dawson-Farrell Gordon Ramsay Holdings Ravens Cliff Pub Statutory Auditors Michelle McManus Harthill & Benhar Horticultural Society Robert Bennie & Sons Charted Accountants Irvine Golf Club Rotary Club of Cumbernauld Chairperson Citypoint 2, 25 Tyndrum Street, Glasgow, G4 0JY Islamic Education Trust Cumbernauld Santander Foundation Dr Margo L Whiteford CBE SBH Scotland Corporate Steer Group J. E. Hackett & Sons Ltd Directors Bankers Scene One Limited James Chapman (Butchers) Ltd Dr Rhoda Abel The Royal Bank of Scotland Scottish Hospitality & John Amabile Design Jonathan R Best 142-144 Princes Street Entertainment Awards John Lewis Aberdeen Prof Robert Carachi MBE Edinburgh Semperian John Lewis Glasgow Thomas A Cromar EH2 4EQ Shell Exploration & Production Knight Frank Commercial Kirstie Dawson Skerryvore Ltd Solicitors Liquid Academy Fraser D Falconer Slaters Gillespie MacAndrew WS Macnairs + Wilson Solicitors + Scott Howie Tesco Craigmarloch Edinburgh Notaries (Appointed September 2016) The Carnoustie Centre Action Group Make Believe Events William H Humes The Rotary Club of Alloa McDonalds P Michael Samuel The Rotary Club of Falkirk McLeod & Aitken William Scott MBE The Rotary Club of Rutherglen Miller Samuel LLP Deyrick Smith

Page 26 SBH Annual Report 2017 SBH Annual Report 2017 Page 27 Spina Bifida Hydrocephalus Scotland

Spina Bifida Hydrocephalus Scotland The Dan Young Building, 6 Craighalbert Way, Dullatur, Glasgow, G68 0LS Tel: 03455 211 811 Email: [email protected] Find us on: Web: www.sbhscotland.org.uk www.hydrocephalusscotland.org.uk

Spina Bifida Hydrocephalus Scotland is a trading name of the Scottish Spina Bifida Association. Scottish Charity No SC013328. A company limited by guarantee. Registered in Scotland Number 213050.