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Keep up-to-date with what's happening at SBH Scotland.
Minister praises innovative spina bifida service “helping disabled young people grow”
Natalie Don, Minister for Children, Young People and the Promise visited the Royal Hospital for Children and Young People in Edinburgh on Wednesday to find out more about a project run by NHS Lothian and Spina Bifida Hydrocephalus (SBH) Scotland.
NHS Lothian’s Spina Bifida Transition Clinic, delivered in partnership with SBH Scotland, brings together all the services needed to enable a young person’s transition from paediatric to adult care and facilitate wider support with transition into adulthood. The Transition Clinic is the only fully integrated clinic of its kind for people with spina bifida in Scotland.
The Minister met with young people and families who benefit from the services provided by the Transition Clinic. Also in attendance were Dr Kamath Tallur, Consultant Paediatric Neurologist and the NHS Lothian team, Lawrence Cowan, CEO of SBH Scotland, and Dr Margo Whiteford CBE, Chair of SBH Scotland.
At the Royal Hospital for Children and Young People in Edinburgh, the Minister heard firsthand from Jeanette Smith, whose daughter Lucy Abeels, 16, has spina bifida and hydrocephalus, on the positive impact the Transition Clinic has had. She also heard from Louise Macdiarmid whose son Louis, 14, has spina bifida.
UK Government urged to add folic acid to flour after new study
A study published in Public Health Reviews has revealed previous data showing the set upper limit of folate was flawed. The experts involved are now urging the Department of Health to approve the fortification of flour with folic acid in order to help reduce neural tube defects (NTD), such as spina bifida, in unborn babies.
This follows the Scottish and Welsh Governments recently writing joint letters to the UK Health Secretary urging him to make the fortification of flour with folic acid mandatory on a UK wide basis.
Recent figures show folate levels in Scotland are particularly low compared to international standards. In Scotland, 81% of women of childbearing age are more at risk of an NTD affected pregnancy because they don’t have enough folic acid – which is 6% higher than the UK as a whole.
Chief Executive of Spina Bifida Hydrocephalus Scotland Andy Wynd MBE said; “We welcome this new evidence published in the Public Health Reviews which shows there is no medical reason to stop folic acid being added to flour. As a charity we have long advocated for mandatory flour fortification in order to reduce the number of children born with neural tube defects such as spina bifida. In light of this new evidence, we believe the UK Government should be actively taking steps to introduce legislation to ensure that mandatory fortification of flour becomes a reality in the UK.”
“In Scotland, the issue of flour fortification is particularly relevant as more children are born with spina bifida than anywhere else in the UK. Flour fortification in other countries has resulted in up to 70% reductions in pregnancies according to recent studies and we believe this would produce similar results in Scotland.”
Scotland specific issues
Scotland has more live births per head of population with spina bifida than anywhere else in the UK. Possibly due to religious and cultural differences, only 45% of pregnancies are terminated in Scotland as compared with 80% in the rest of the UK.
Taking daily folic acid supplements, at the correct recommended dose (0.4mg) three months prior to conception, could reduce up to 70% of these pregnancies from being affected and lower both the number of those born with the condition and the number of pregnancies terminated.
Children born with spina bifida often have paralysis in the lower limbs, urological, neurological and orthopedic problems which often become more significant throughout life. Fortification of flour would reduce the number of babies born with this lifelong disability. Find out more about folic acid and flour fortification on the Spina Bifida Hydrocephalus Scotland website www.sbhscotland.org.uk/folic-acid
Parents in Scotland are offered impartial and non-judgmental advice by SBH Scotland to enable them to make informed decisions about their pregnancy. Whatever their final decision, SBH Scotland will always be there for support and advice whenever needed. Those affected by any of the issues associated with spina bifida or hydrocephalus, can call the SBH Scotland Family Support Service helpline on 03455 211 300, email: support@sbhscotland.org.uk or visit www.sbhscotland.org.uk
Fancy Making Some Noise at Pedal for Scotland?
SBH Scotland are one of the nominated charities who will receive funding from Global Radio's 'Make Some Noise' charity appeal this year and we're asking everyone who'd like to support their appeal if they'd like to take part in Pedal for Scotland on Sunday 10th September in Glasgow.
Over 10,000 riders will be taking part in 6 cycling routes across Scotland; From the wee janut to the Big Belter - if you like cycling this is a great challenge.
Make Some Noise offering those taking part free entry into any of the distances as long as you pledge to raise £100 for Make Some Noise.
To get signed up
- Click on this link:
- Get registered and when prompted use the code for the Heart team - HRTFM17, which will give you free entry
- This will be for any ride – 10 mile Wee Jaunt Edinburgh, 45 mile Classic Challenge or the 93 mile Big Belter.
- For your fundraising Makes Some Noise ask that you use this page
Don’t worry if you can’t get the £100 before September 10th as you have until the start of October to fundraise!
By signing up for Pedal for Scotland you also agree with the terms and conditions which are detailed below.
The Travis - Nothing Ever Happens Video is here!
And they say nothing ever happens!!! It's just not the case at SBH Scotland. Thanks to our friends at Baby Grand Productions we now have a brilliant film of our families to go along with the Christmas Single generously donated by internationally renowned band, Travis. Quite a busy December.
The single is now available to download or stream from all major online music retailers, along with the full 'Pasted Beyond Recognition Album' and all profits come to our charity so please share this festive story far and wide and help us continue making a difference to the lives of all those we support.
A massive thank you to everyone who has been involved with this Del Amitri fans project.
Share a Give-Card this Christmas
Due to increased costs and lack of demand we no longer purchase Christmas cards to sell but thanks to JustGiving you can still buy SBH Scotland e-cards and share your message of support to friends and family this Christmas.
Thank you and Happy Christmas from everyone at SBH Scotland.
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