Scoliosis Association (UK) · information to people affected by scoliosis and their families and...

2016-17Registered charity no. 285290

Annual ReviewScoliosis Association (UK)Support for people affected by scoliosis.

2 Scoliosis Association (UK) Annual Review 2016-17

Contents3 Chair’s introduction

4 What is scoliosis?

5 Who we are

6 How we help

8 Ellisha’s story

9 The Scoliosis Campaign Fund

10 How you can help

11 Trustees, staff and, volunteers

12 Accounts

15 Our year in numbers

www.sauk.org.uk • /ScoliosisAssociationUK • @ScoliosisUK 3

I am delighted to report that SAUK has a new Patron, Pippa Britton. Pippa is a Paralympic champion in archery and also has a severe scoliosis. Pippa was part of the Para Archery team for GB for 14 years and achieved great success, winning 24 medals from 24 International competitions. She competed at the Paralympics in Beijing 2008 and London 2012, attained several World Records, and competed for several years for the able-bodied Wales team. Pippa says “I am incredibly proud to have achieved so much, especially having had two lots of major spinal surgery in the same period”. We at SAUK are very honoured and proud to have her as our Patron.

I am sorry to report that Mr Michael Edgar, a very longtime Trustee of SAUK, has retired. As a senior surgeon he was an invaluable support and source of information and we are very grateful to him. However, I am delighted to welcome Dr Nick Jones to the Trusteeship, who is one of AilIe Harrison’s grandsons and a general practitioner, now doing research in Oxford.

SAUK could not exist if it were not for the absolutely wonderful fundraising efforts of our members. The dedication of our members and their families and friends is truly impressive, so much so that we have decided to recognise the most ambitious fundraisers each year. We have introduced special awards for individual and for group fundraising, and our first winners, Fund-raisers of the year 2016, were Alicia Cico and Source LF. Alicia raised an astonishing £7068.25 by running the London 10K. What a wonderful effort! The team award went to Carla York, Brooke Strachan, and all their fantastic colleagues at Source LF. Carla and Brooke ran the London Marathon and Source LF organised a host of brilliant ventures, including a gruelling Glencoe challenge.SAUK’s cofounder Ailie Harrison generously left some money to SAUK when she died in 2014. Ailie was passionate about art and a keen amateur artist, so we decided to use her bequest to run an annual art competition. We have asked members to submit their designs for our next T-shirt. We are very excited about this competition and will announce the winners next year.SAUK continues to flourish, despite the reported downturn in peoples’ financial prospects.

We are keen to improve an essential service to people with scoliosis and their families. We are therefore planning to increase our regional meetings to four a year because they provide a valuable forum for our members to share their experiences and meet the professionals who care for them. We are also extending our network of Regional Representatives who are all volunteers and play such an important part in putting people in touch with each other and in fundraising activities.

It remains for me to thank the staff in SAUK’s office for their support and dedication to the work of the Association, and my Trustees for their great support and help.

Stephanie Clark, Chair of the Trustees


What is scoliosis?Scoliosis is when the spine curves to the side. It is not a disease. It just means that in an often otherwise healthy person the spine is curved or twisted. It is not infectious or contagious. It does not develop because of anything a person did or did not do.

Scoliosis can happen at any age. However, the most common time is around age 10 to 15 when a child is in early adolescence. In most cases the cause is unknown. Sometimes the scoliosis is due to a neuromuscular condition, such as muscular dystrophy or cerebral palsy. Scoliosis can also develop as part of a syndrome, such as Marfan syndrome.

Scoliosis can affect a person’s appearance because when the spine bends to the side it can also twist. This twisting can pull the ribcage out of place. The ribcage can then sometimes form a bulge on the back and cause a shoulder blade to stick out.

The spine can curve to the left or the right. The curve can happen in different parts of the spine. It might be in the chest area, which is called ‘thoracic’ scoliosis. It might be in the lower, ‘lumbar’ area of the spine. A large thoracic curve can affect how well the lungs work.

Sometimes there are two curves and the spine may look like an S shape from behind. This is called a ‘double curvature’. When the curve is S-shaped a person’s spine can appear quite straight because the two curves cancel each other out.

Most patients with scoliosis should be checked regularly by a scoliosis specialist. At SAUK we have an up-to-date list of scoliosis specialists and can let you know where to find your nearest specialist centre.


Who we are

Daniel Harvey

SAUK is the only UK wide patient support organisation for people with scoliosis and their families.

Our aim is to provide advice, support, and information to people affected by scoliosis and their families and raise awareness of scoliosis among health professionals and the general public.

Many people have never heard of scoliosis and don’t have an understanding of the effect it can have on lives. Having scoliosis can leave people feeling isolated and unsure where to turn.

At SAUK our aim is to be there for people with scoliosis and those close to them so that we can help them to access the care they need, reduce feelings of isolation, poor body image, worry, fear, and lack of information.

SAUK has been providing support for people affected by scoliosis since 1981.

We’ve got your back.


How we help

We run a Helpline where people can call

or email the SAUK team for advice, support, or just

someone to talk to.

Email [email protected] or call 020 8964 5343

to talk to us.

We run a membership network that allows people with scoliosis to get in touch

with each other and offers the support of a SAUK Regional

Representative.

Join us at www.sauk.org.uk/membership.

We’re online. We have a members’

forum, Facebook page, and Twitter feed for people

affected by scoliosis to connect.

Find uswww.sauk.org.uk

/ScoliosisAssociationUK @ScoliosisUK We give people with

scoliosis a voice. We represent their views and concerns and campaign for better resources and

understanding of the condition.

We keep an up-to-date list of scoliosis specialists,

allowing people with scoliosis to find out where to go for the

best available treatment.

Contact us to find out about the NHS scoliosis specialist

resources near you.

We hold patient meetings at which specialists provide advice about scoliosis and

people have the chance to ask questions.

Get in touch for dates and venues.

We produce a twice-yearly magazine called

Backbone, which is full of practical advice, support,

and information.

We provide health information publications

in accordance with the NHS Information Standard, which means our information is up-

to-date, accurate, and has been checked by specialists.

Visit www.sauk.org.uk/scoliosis-information or contact us for

paper copies.

We have an online store where we sell a range

of products including wrist bands, t-shirts, shopping bags

and Christmas cards. All profits raised by the proceeds of our sales

go towards supporting those with scoliosis, their families and friends. Visit www.sauk.org.uk/

shop/shop-online

6


Contact [email protected] • 020 8964 5343 • / ScoliosisAssociationUK • @ScoliosisUK

Find out morewww.sauk.org.uk/about-us

How we helpRegional RepresentativesSAUK has a nationwide network of over 50 Regional Representatives. As a member of SAUK, we can put them in touch with those in their area so that they have somebody more local to talk to.

SAUK Regional Representatives provide an amazing amount of support and we simply couldn’t do what we do without them. They support SAUK members at a local level, and they do a brilliant job raising awareness. Some have regional Facebook groups and organise regular local get-togethers, too.

If you would like to learn more get in touch for a copy of the Volunteer Handbook on [email protected]. You can also call 020 8964 5343.

Infomation Standard

SAUK has Information Standard accreditation. The Information Standard, developed by NHS England, is a certification scheme for all organisations producing evidence-based health and social care information for the public. It helps the public and patients quickly identify reliable sources of quality, evidence-based information through the use of an easily recognised quality mark.

SAUK health information that bears the Information Standard logo is written by specialists and is peer-reviewed as part of our rigorous information production system. Check out the Information Standard accredited medical information and personal accounts on our website, at www.sauk.org.uk/scoliosis-information.

Above: Lee Gemma Crockford & Camilla Seckin


Ellisha’s storyMy daughter Ellisha has neuromuscular scoliosis. She was born with spinal dysraphism with diastematomyelia as well as a severe scoliosis that was caused by spina bifida. Ellisha has had 13 major operations and will need more in the future.

Ellisha has had her difficulties and has spent a lot of time in hospital. She spent her first 6 years in spinal casts, which had to be changed every four to six weeks. At the age of six she had major surgery for her first set of growth rods because her curve was very severe at over 150 degrees. Surgery was a success and made her curve stable at around 100 degrees for 5 years then we found her rods had snapped and her curve had progressed again, so needed another major operation to have her rods replaced.

We are happy to say Ellisha got through the surgery to have her rods replaced and her curve is now stable again and she is well on the way to recovery. Despite having surgery Ellisha still has a large curve that has caused some problems with her lungs and breathing but that is all under control with medication.

When Ellisha was first diagnosed with severe scoliosis it was a shock to us all. We knew very little about the condition and what it meant. After a call to SAUK we had a much better understanding of scoliosis and how it would affect Ellisha. Although Ellisha is quite a complex case, they were still more than happy to help us and have always been there when we needed them for help or advice. Without SAUK we would have been totally lost. The team provided us with so much information and knowledge about a condition we knew nothing about, and as parents we know just how important it is for information to be more available and for more people to be made aware of this condition.

It’s been a long journey for all of us as a family but we have got through it together. We have had some tough times, sad times, and good times along the way with lots of tears and fears. We have had great support from amazing people at SAUK and the hospital and have been well looked after.

Even though Ellisha has always been scared and anxious of what she has had to face, she has always been so positive, brave, and strong. Each and every operation has been a scary and

anxious time for her. We are so very proud of her and the strength she has had to get through these operations.

Ellisha has alot of other issues, she has 15q 13. 3 microdeletion syndrome and growth issues but we don’t let that get in her way of enjoying life as best as she can. Despite everything Ellisha is a happy go lucky little girl who is always smiling, she attends a special needs school where she can take part in all activities despite her disabilities. Ellisha loves her football, she’s a big fan of Luton Town football club and she also plays boccia and wheelchair football for her school.

Thank you for everything SAUK.

Sally Hockham


The Scoliosis Campaign Fund

Above: Chris Imm and the Bog Joggers

The Scoliosis Campaign Fund (SCF) is a fundraising initiative that SAUK runs in partnership with our sister organisation, the British Scoliosis Research Foundation (BSRF).

Our brilliant SCF fundraisers raise funds to provide support and improved care for scoliosis patients and to finance research into the causes and treatment of scoliosis. All SCF’s proceeds are split equally between the BSRF and SAUK.

The amazing efforts of our fundraisers means that we can support people with scoliosis now and in the future.

We don’t receive any government funding and without our fundraisers we could not exist. Every penny they raise makes a difference.

Thank you so much to all our supporters!

Fundraise with us

www.scoliosiscampaignfund.org.uk

[email protected]

/SCFuk

@SCF_scoliosis

Learn more about BSRF

www.bsrf.co.uk

[email protected]

/BritishScoliosisResearchFoundation

@ScoliResearch


How you can help

Volunteer with us to support and advise

people with scoliosis in your local area or to offer your time or skills on an ad hoc basis. We’re a

tiny team and we are always in need of helping hands!

Email [email protected] for the Volunteer

Handbook and more information.

Donate money or leave a legacy to

SAUK, helping SAUK continue to provide support and advice

to people with scoliosis.

Buy SAUK merchandise from our website. We

have an online store where we sell a range of products

including wrist bands, t-shirts and shopping bags. www.

sauk.org.uk/shop/shop-online

Fundraise through the Scoliosis Campaign Fund (SCF).

See p. 9 for all the details!

Take part in International Scoliosis

Awareness Day, held on the last Saturday in June

each year.

Email [email protected] for more

information.

Raise awareness through

social media, by sharing your story in our publications, or by distributing our posters

and leaflets.

Email [email protected] for more

information.

Join as a member for lots of

benefits and to be part of our nationwide support

group.

Email [email protected] for an information pack or join at www.sauk.org.

uk/membership.

There are many ways that you can support SAUK; whether you want to offer support to others with scoliosis, hold a bake sale, or share your story. We could not continue our work without the many amazing people who give up their time to get involved. Thank you so much.


Trustees, staff, and volunteersStaff

Claire Curley, National Director

Nikul Bakshi, Communications Officer

Denise Aulsberry, Accounts and Membership Officer

Volunteers

SAUK has a UK-wide network of over 50 Regional Representatives, who provide support, advice, and information at a local level.

We are enormously grateful to all our Regional Representatives for the brilliant work they do to further the work of SAUK.

Trustees

Chair: Stephanie Clark PhD, retired Executive Editor at the The Lancet and Founder and Chair of SAUK

Pierre Bernard, parent

Nicholas Jones, GP trainee and Academic Clinical Fellow, Oxford

Susannah Kraft, Theatre General Manager and scoliosis patient

Carol Richards, parent

Dominique Rothenfluh, Consultant Spinal Surgeon, Oxford University Hospitals NHS Trust

Professor Anita Simonds FRCP, Consultant in Respiratory and Sleep Medicine and Professor of Respiratory and Sleep Medicine, National Heart and Lung Institute, Imperial College London

Stuart Spencer PhD, Executive Editor at the The Lancet

Thanos Tsirikos FRCS, Scoliosis Specialist, Scotland


Statement of Financial Activities for the Year to 31 March 2017

Unrestricted Restricted Total 2016 Funds Funds Funds Notes £ £ £ £ Incoming resources 1b Donations and Grants 3 77,229 - 77,229 84,185Fundraising (Net proceeds) 4 60,851 - 60,851 67,398Subscriptions 16,839 - 16,839 17,248Sale of Goods & Publications 1,297 - 1,297 722Interest Receivable 182 27 209 259Miscellaneous Income 625 - 625 5,255Total incoming resources 157,023 27 157,050 175,067 Resources expended 1c Newsletter Printing & Postage 5,999 - 5,999 6,093Staff Pay 5 89,703 - 89,703 88,121Travel & Subsistence 716 - 716 663Postage & Telephone 9,994 - 9,994 8 ,616Stationery 1,206 - 1,206 286Printing & Photocopying 10,030 - 10,030 11,812Office Equipment & Maintenance 5,545 - 5,545 920Rent & Service Charges 16,465 - 16,465 10,541Insurance 992 - 992 960Professional Fees 2,460 - 2,460 11,678Miscellaneous 2,965 - 2,965 8,192Total resources expended 146,075 - 146,075 147,882 Net incoming/(outgoing) resources 10,948 27 10,975 27,185 Transfer between funds 600 (600) - - Net movement in funds 11,548 (573) 10,975 27,185 Fund Balances Brought Forward at 31 March 2016 210,984 24,355 235,339 208,154 Fund Balances Carried Forward at 31 March 2017 222,532 23,782 246,314 235,339 The notes on pages 3 to 4 form part of this account I have examined the attached financial statements in accordance with approved auditing guidelines. In my opinion the financial statements give a as at 31st March 2017, and of its surplus for the year then ended.

Balance Sheet as at 31 March 2017 2017 2016 Notes £ £

Fixed Assets No Fixed Assets 0 0 Current Assets Debtors and Payments in Advance 5,042 5,785Rent Deposit 1,638 1,638Bank Current Accounts 149,817 139,090Bank Deposit Accounts 116,305 117,410Cash in Hand 60 60 Current Liabilities 272,862 263,983 Creditors 26,549 28,644 Net Current Assets 246,314 235,339 Total Assets less Current Liabilities 2 246,314 235,33

Funds of the Charity

2017 2016 £ £

Unrestricted Income Funds: Accumulated General Fund 215,568 203,769 Unrestricted Designated Funds: Andrew Minns fund 1,965 2,215Ailee Harrison Memorial Art Fund 5,000 5,000 6,965 7,215 Restricted Income Funds: London Law Trust (Baby Project) 1,315 1,315Strongbones Children’s Charitable Trust 3,256 3,256ARISE (BSRF) 19,211 19,784 23,782 24,355 Total Funds 246,314 235,339

Approved by the Trustees and signed on their behalf by Stephanie Clarke (Chair of the Trustees)


Statement of Financial Activities for the Year to 31 March 2017

Unrestricted Restricted Total 2016 Funds Funds Funds Notes £ £ £ £ Incoming resources 1b Donations and Grants 3 77,229 - 77,229 84,185Fundraising (Net proceeds) 4 60,851 - 60,851 67,398Subscriptions 16,839 - 16,839 17,248Sale of Goods & Publications 1,297 - 1,297 722Interest Receivable 182 27 209 259Miscellaneous Income 625 - 625 5,255Total incoming resources 157,023 27 157,050 175,067 Resources expended 1c Newsletter Printing & Postage 5,999 - 5,999 6,093Staff Pay 5 89,703 - 89,703 88,121Travel & Subsistence 716 - 716 663Postage & Telephone 9,994 - 9,994 8 ,616Stationery 1,206 - 1,206 286Printing & Photocopying 10,030 - 10,030 11,812Office Equipment & Maintenance 5,545 - 5,545 920Rent & Service Charges 16,465 - 16,465 10,541Insurance 992 - 992 960Professional Fees 2,460 - 2,460 11,678Miscellaneous 2,965 - 2,965 8,192Total resources expended 146,075 - 146,075 147,882 Net incoming/(outgoing) resources 10,948 27 10,975 27,185 Transfer between funds 600 (600) - - Net movement in funds 11,548 (573) 10,975 27,185 Fund Balances Brought Forward at 31 March 2016 210,984 24,355 235,339 208,154 Fund Balances Carried Forward at 31 March 2017 222,532 23,782 246,314 235,339 The notes on pages 3 to 4 form part of this account I have examined the attached financial statements in accordance with approved auditing guidelines. In my opinion the financial statements give a as at 31st March 2017, and of its surplus for the year then ended.

Balance Sheet as at 31 March 2017 2017 2016 Notes £ £

Fixed Assets No Fixed Assets 0 0 Current Assets Debtors and Payments in Advance 5,042 5,785Rent Deposit 1,638 1,638Bank Current Accounts 149,817 139,090Bank Deposit Accounts 116,305 117,410Cash in Hand 60 60 Current Liabilities 272,862 263,983 Creditors 26,549 28,644 Net Current Assets 246,314 235,339 Total Assets less Current Liabilities 2 246,314 235,33

Funds of the Charity

2017 2016 £ £

Unrestricted Income Funds: Accumulated General Fund 215,568 203,769 Unrestricted Designated Funds: Andrew Minns fund 1,965 2,215Ailee Harrison Memorial Art Fund 5,000 5,000 6,965 7,215 Restricted Income Funds: London Law Trust (Baby Project) 1,315 1,315Strongbones Children’s Charitable Trust 3,256 3,256ARISE (BSRF) 19,211 19,784 23,782 24,355 Total Funds 246,314 235,339

Notes to the Accounts for the Year to 31 March 2017 1. Accounting Policies a Accounting Convention The accounts have been prepared under the historical cost convention and in accordance with applicable accounting standards and the Statement of Recommended Practice on Accounting by Charities. b Incoming Resources Income received which is designated by the provider to be applied for specific purposes is accounted for within restricted funds. Funds committed by the trustees for a specific purpose are accounted for as unrestricted, designated funds. Income which is not designated for any specific purpose is accounted for within unrestricted, general funds. c Resources Expended The Association’s resources are committed directly for funding the activities of SAUK in order to achieve it’s aims. These activities include - Maintaining the Helpline through which advice and support is given to SAUK members. Communicating with members and organising member and service user events. Fundraising activities. Running the volunteer network. Communicating with members and the public, including through social media, in order to promote and raise awareness of SAUK and it’s activities. Office support for general accounts and admin., including strategy and planning. 2. Analysis of Net Assets by Fund Unrestricted Funds Restricted Funds General Designated Total Fund Funds £ £ £ £ Total Assets 242,116 6,965 23,782 272,863 Current Liabilities (26,549) - - (26,549) Net Assets 215,567 6,965 23,782 246,314 3. Donations and Grants 2017 2016 £ £ Unrestricted General Donations 52,014 52,853 Legacies 900 10,000 BSRF Grant 49,458 40,202 Other Grants 3,000 3,000 105,372 106,055 4. Fundraising Income 2017 2016 £ £ Christmas Cards (Net Proceeds) 542 2,224 Raffle (Net Proceeds) 4,234 2,959 500 Club (Net Proceeds) 702 1,046 Joint Activities with BSRF 23,857 24,552 Other Activities 31,516 30,912 60,851 61,693

5. Employee Remuneration Total remuneration for the year amounted to £89,703 (2015/2016 £88,121). Average number of paid staff for the year was:- 4 (2015/2016 - 4)

Independent Examiner’s Report to the Trustees of SAUKI report on the accounts of the Trust for the year ended 31 March 2017, which are set out on the previous two pages. Respective responsibilities of Trustees and Examiner. As the Charity’s Trustees you are responsible for the preparation of the accounts; you consider that the audit requirement of Section 43(2) of the Charities Act 1993 does not apply. It is my responsibility to state, on the basis of procedures specified in the General Directions given by the Charity Commissioners under Section 43 (7) (b) of the act, whether particular matters have come to my attention. Basis of Independent Examiner’s Report. My examination was carried out in accordance with the General Directives given by the Charity Commissioners. 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 I do not express an audit opinion on the view given by the accounts. Independent Examiner’s StatementIn 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 41 of the Act and to prepare accounts which accord with the according records and to comply with the accounting requirements of the 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.

Ross Baker ACMA

Where the money comes from

Total £157,050

Where the money goes

Scoliosis Association (UK) Annual Review 2016-1714

Total £146,075


Our year in numbers

15

11,000Number of Facebook page likes

2137Members of our support network.

www.sauk.org.uk/membership

3Spinal meetings held by SAUK and

attended by our staff to help stay at the forefront of research, develop

connections, and represent your views

2200Helpline telephone calls

answered

56Regional Representatives in

our volunteer network, offering support to members

7500Helpline emails received and

responded to

3200Followers on Twitter

Scoliosis Association (UK)4 Ivebury Court325 Latimer RoadLondonW10 6RA

020 8964 [email protected]

Registered charity no. 285290Designed by Nikul Bakshi & Anna Glendenning

All uncaptioned images © Ayesha Jones

Icons on p. 15 courtesy of Alexander Bickov, Martin Chapman, Sergey Demushkin, Delwar Hossein, Ben Rizzo, Marie Van Den Broeck, and Nicolas Vicente, all via the Noun Project

Follow uswww.sauk.org.uk

/ScoliosisAssociationUK @ScoliosisUK

Annual Review 2016-17

Registered charity no. 285290

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