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Support Helpline 03455 211 300
Fundraising 03455 211 600

Latest news

All change - the move to Personal Independence Payments (PIP)

DWP PIP payment logo

The move from Disability Living Allowance (DLA) to Personal Independence Payments (PIP) is causing a lot of uncertainty for many people aged 16 to 64. The SBH Scotland Financial Support Team have been dealing with our members who are currently affected; working to support them through a system which has remained largely unchanged for a great number of years.

This can be a scary time for many who are unsure of what the changes to benefits will mean for their individual circumstances, so we’ve written some top tips and dedicated a web page as a simple guide to PIP, how to apply or to appeal but most importantly to reiterate that we are here to help and advise all those people in Scotland affected by spina bifida or hydrocephalus.

Email us or call the SBH Scotland Helpline on 03455 211 300.

Top Tips:

  • For all SBH Scotland Members, the SBH Scotland Financial Support Service are here to offer comprehensive advice for PIP applications, at any stage in your PIP process. They can help you to complete your forms, offer advice on your assessments and support you with mandatory reconsiderations and appeals.
  • For those who are not members of SBH Scotland other agencies like the Citizens Advice Bureau should be able to assist you with your application.
  • Before filling out the form please read the assessors guidance so you’re giving the information they now use to assess for PIP rather than DLA.
  • Please keep copies of all documents you send away. This is useful if documents are lost in the post or if a reconsideration is requested. If you have no access to a photocopier you could use a camera or mobile phone to take photos of your documents.
  • When you go to your assessment, take along a friend or relative who knows you well for support and to take notes.
  • In your assessment it’s important to talk about the things you have difficulty with or can’t do at all. The assessor probably won’t know anything about you so it’s important you go over everything, even if you've already told them on the form.

For more information visit our Simple Guide to PIP

Airspace EK take one giant leap for SBH Scotland

Staff fly through the sky at Airspace

A Team of eleven employees from Airspace East Kilbride, have pledged to raise thousands of pounds for Spina Bifida Hydrocephalus Scotland (SBH Scotland) by taking part in a jump of a different kind! On Sunday 26th March they’ll be following their motto of ‘living life adventurously’ by swapping trampolines for bungee cords as they jump 132ft from the bridge at the Pass of Killiecrankie in Perthshire.

The Airspace team got involved with the specialist charity when they heard that over 700 people are affected by the lifelong, complex disabilities of spina bifida and/or hydrocephalus in Lanarkshire alone and that the funds they raise would directly go towards the support of these families.

Chris Rome, Marketing Manager for Airspace EK said, “Our ethos at Airspace is that everyone has ‘space to fly’ and we’ll certainly get that on this exhilarating challenge. The 50 mile per hour jump will be worth it if we can raise lots of money for SBH Scotland.

He continues, “We’ve got counter boxes in our café and at reception and we’re very grateful to everyone who’s donated so far. This charity receive little statutory funding and rely on fundraising to continue vital work in our own community so it’s important to us that we raise as much as we possibly can.”

SBH Scotland offer a lifetime commitment of support and information to all those in Scotland affected by the spina bifida and/or hydrocephalus. Established in 1965, the charity now supports over 3,500 children, young people, adults, their family members and carers every year in Scotland.

Lynsey Hamilton, SBH Scotland Fundraiser says, “The bungee jump at the Pass of Killiecrankie is going to be a fantastic event with over 50 people jumping for SBH Scotland. We’re very excited that Airspace East Kilbride are getting involved, their support will make a direct difference to the lives of children that we work with.”

To take part in the Bungee Jump yourself please contact Lynsey Hamilton on 03455 211 600 or email lynsey.hamilton@sbhscotland.org.uk. To support the Airspace EK team pop in to give a donation or donate via their online sponsor page at www.justgiving.com/fundraising/AirSpaceEK Full details at www.sbhscotland.org.uk/bungee-jump

CBE for SBH Scotland Chair, Dr Margo Whiteford

Spina Bifida Hydrocephalus Scotland are delighted to announce that their Chairperson, Dr Margo Whiteford, has been awarded the title of CBE (Commander of the British Empire) as part of the 2017 New Year’s Honours List for her services to charity and health.

Dr Whiteford was diagnosed with spina bifida at birth and is paralysed from the waist down. Despite spending most of her life in a wheelchair, she has dedicated her time to charitable causes, taking particular interest in organisations that support lifelong conditions.

Dr Margo Whiteford

A longstanding member, and now chairperson, of Spina Bifida Hydrocephalus Scotland (SBH Scotland) Dr Whiteford is also a board member of the International Federation for Spina Bifida and Hydrocephalus and was elected president of the organisation in 2013. She is also chair of a global expert panel which looks to improve treatments for people with spina bifida on a worldwide scale, and she works closely with the Global Summit for Food Fortification in Tanzania.

Dr Whiteford dedicates her efforts to raising awareness of the complex conditions. In 2002 she took part in the Great North Run, where she not only completed the 13-mile event in her wheelchair, but managed to convince fellow competitor, Gordon Ramsay OBE to become an honorary patron of SBH Scotland. Since taking up the role in 2005, the TV chef has raised thousands of pounds for the organisation. In 2009 Dr Whiteford added to her long list of fund raising achievements when she completed the London Marathon, raising £15,000 in the process. She has also completed the Great Scottish Run on four separate occasions and most recently has zip wired across the River Clyde.

Chief executive of SBH Scotland Andrew H D Wynd MBE said, “I would like to offer my congratulations to Dr Whiteford whose support over the past 30 years has been indispensable to SBH Scotland. She is an incredible woman whose achievements demonstrate that physical disability does not have to be a barrier to success.

“As a voluntary member of organisations like ours, Dr Whiteford utilises her spare time to attend meetings and seminars across the world. Her dedication to improving the lives of those affected by these complex conditions is irrefutable and she is truly an inspiration to all of us.

He continues “Her parents were part of the original group that founded SBH Scotland back in 1965 with the aim of providing support to those affected by the condition. It is incredible that just 50 years later we are seeing their daughter being recognised for her own contributions to this cause. She is a tireless campaigner and the team at SBH Scotland could not be happier for her latest achievement.”

In her professional career, Dr Whiteford continues to break stereotypes, proving that being in a wheelchair does not preclude her from working in challenging environments. Originally graduating from the University of Dundee with a BSc in Pharmacology, she went on become a qualified medical practitioner. Today, she works as a consultant clinical geneticist at the Queen Elizabeth Hospital in Glasgow, where she has diagnosed, and supported hundreds of children and adults who are affected by genetic conditions.

The final word comes from Dr Margo Whiteford herself,

"I'm just glad that my parents are able to witness this after the gloomy picture that they were given about my future when I was born. To all parents of children with spina bifida never give up dreaming about what might be achieved."

SBH Scotland win National Charity of the Year

Dr Margo Whiteford and Richard Donald of SBH Scotland receive an award

Spina Bifida Hydrocephalus (SBH) Scotland, has been named National Charity of the Year by a host of judges and scooped up three other accolades at this year’s Charity Champions Awards.

The awards, which are judged by an independent panel who include the Office of the Scottish Charity Regulator (OSCR), were set up to recognise and reward the country’s charitable sector and they announced the winners at the Marriott Hotel, Glasgow, during a glitzy ceremony.

Charity Champions CEO Warren Paul and event organisers at Paramount Creative said,

"We are delighted that Spina Bifida Hydrocephalus (SBH) Scotland, have won National Charity of the Year. They do such an amazing job and work tirelessly for their cause and that is why we are so honored to celebrate their hard work."

SBH Scotland were awarded four awards in total including the top gong, National Charity of the Year. Its chairperson, Dr Margo Whiteford, was awarded the Lifetime Contribution Award for her dedication to raising awareness of disabililty over the past 50 years.

A group of SBH Scotland fundraisers in Peterhead also won Volunteers of the Year, for their continued support and unique fundraising efforts.

Finally, SBH Scotland was announced as runner-up for Disability Charity of the Year.

Deborah Roe, fundraising director at SBH Scotland, said: “We’re honoured to win National Charity of the Year, as well as recognise Margo for all her achievement and commitment to improving lives over three decades. She inspires us daily and is a driving force behind everything we’re able to achieve.

“Our Peterhead ladies are also well deserving and we are grateful to everyone who sponsors, donates and volunteers to help us on our mission.

“We’ve just celebrated the 50th year of SBH Scotland and it’s amazing to see how far we’ve come in half a century and we’re proud to be recognised for the specialist work we provide across the country.”

If you would like to support SBH Scotland, call 03455 211 600, email or visit our web for more details.

Baby Bella inspires family to raise £1,500 in Kiltwalk

A Banchory dad, whose three-month old baby daughter, Bella, has spina bifida and hydrocephalus, is part of a team which raised nearly £1,500 for our specialist charity to help other babies with the same condition.

The McDonald Family raised £1500 in the Aberdeen Kiltwalk

Martin McDonald, along with Bella's aunt and uncle, Anna and Grant, were sponsored to complete the 26-mile walk Aberdeen Kiltwalk from Duthie Park to Portach Green.

Spina Bifida occurs early in pregnancy and Martin’s daughter Bella was born in April with the condition which led to two operations in her first week of life, one to close the hole in her back, and one to fit a medical device to drain fluid which had built up in her brain as a result of Hydrocephalus.

The McDonald Family raised £1500 in the Aberdeen Kiltwalk

The money raised will be used by us to provide personalised home and hospital support for families in the North of Scotland with new born babies who have spina bifida and/or hydrocephalus

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