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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.

Make time for folic acid image

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

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: or visit

Aberdeenshire School Initiative Wins at National Awards

Spina Bifida Hydrocephalus Scotland’s work with Dalespark Primary School in Peterhead has seen it crowned winner of the ‘Education Partnership’ Award at the ScottishPower Foundation Awards in Glasgow last night (7 Nov).

Clare Cogan Turner of SBH Scotland is presented with the education award from Elena Sanz of Scottish Power Foundationthe Scott

Spina Bifida Hydrocephalus Scotland (SBH Scotland) is working with teachers and students at Dalespark Primary; which has an exceptional approach in working for the inclusion of those with additional support needs. Together, they are producing an educational film that will offer insight into aspects which have worked well for their members affected by spina bifida and/or hydrocephalus.

This film, along with existing SBH Scotland resources, will be promoted by the charity’s support workers to schools across Scotland over the next twelve months. It will serve as a model of how these complex disabilities can be approached by those working in an education setting to help all children reach their full potential.

SBH Scotland was granted £20,000 from the ScottishPower Foundation at the beginning of the year. This funding went towards our Be All You Can Be work. The programme offers specialist early intervention support for 186 children aged 0-8 across Scotland and an estimated 558 carers or siblings.

Representatives from the charity attended the ceremony which took place at the new Glasgow HQ of ScottishPower, funder of the ScottishPower Foundation. SBH Scotland received an additional £5,000 as part of the education award.

Deborah Roe, Director of Fundraising for SBH Scotland, said, “We are very grateful for the continued support of the Scottish Power Foundation and honoured to win this award which will enable our inclusion work in schools to continue into the future. We’d also like to thank Dalespark Primary School for their dedication in working with us on this important project.”

Ann McKechin, Trustee and Executive Officer of the ScottishPower Foundation, said: “It’s fantastic to see Spina Bifida Hydrocephalus Scotland partner with Dalespark Primary School to improve the lives of young people facing difficulties in our local communities and create best practice tools. The project is a model example of how charities and education services can successfully work together to foster better conditions for children, and a very worthy winner.”

The ScottishPower Foundation was established in 2013 to support charitable projects and reinforce the energy company’s commitment to charitable work throughout the UK. The Awards ceremony is now in its fourth year and has become a yearly platform celebrate the work of the projects which the Foundation has provided funding to during 2017. This year it donated more than £1.8M to 26 organisations.

Continence Information Day

SBH Scotland are holding a ‘Continence Information Day’ on Wednesday the 25th of October 2017. It will be at The Dan Young Building from 2pm-7pm and you can drop-in at any time. The session is open to anyone looking for continence advice.

By attending the information day you will be able to talk with some of the leading continence providers for bowel and bladder care. They’ll be able to answer your questions and show you their new and existing products.

· View new & existing products on the market

· Speak directly to providers

· Ask questions

· Find out about local services

If you require any further information, please;

Tel: 01236 804944


European Accessibility Act is Under Threat

Millions of people in Europe with disabilities are still excluded from using basic products and services that are taken for granted by others such as withdrawing money from an ATM, entering a bank, a school, a university or any public building, using the underground etc. Europe needs a strong and ambitious European Accessibility Act but currently it's under threat!

European Accessibility Act

Proposed back in 2015, the European Accessibility Act (EAA) hoped to enhance the rights and reduce discrimination across Europe for those living with disabilities in all areas of life; from travel and healthcare to banking and product pricing. Since then much of the proposed Act has been under negotiation with compromises sought on issues such as the built environment, public procurement, transport or the definition of "persons with functional limitations".

Currently proposed amendments water down the Act to the extent that it becomes meaningless.

With the European Accessibility Act under threat we’d like you to join the International Federation of Spina Bifida and Hydrocephalus in engaging your MEP’s, asking them to support the rights of persons with disabilities by substantially amending the Internal Market Committee of the European Parliament's (IMCO) report in the plenary in June and promote a strong and ambitious Accessibility Act.

The final plenary European Parliament vote is scheduled for mid-June so we need to take action now!

Why is the European Accessibility Act relevant to persons with spina bifida and/or hydrocephalus (SBH)?

  • It will enhance their right to independent living as they will be able to manage themselves further in aspects of life such as banking, e-commerce and other services.
  • Thanks to increased cross border trade and mobility, persons with SBH will be able to profit from a more competitive price of products and services
  • more products and services will be accessible and therefore easier to use in the areas of ICT, transport, banking and retail
  • accessibility of transport (infrastructure, ticketing machines, booking processes, information etc) will be improved (if transport stays as part of the EAA), which will enhance the possibility for persons with SBH to travel.
  • accessible transport and therefore increased mobility will improve the participation of persons with SBH in education, labour market and society in general
  • the EAA will provide a framework for accessibility requirements which can serve as a point of reference for persons with SBH when they travel to other countries and want to use services or products there
  • EAA will reduce discrimination of persons with disabilities including persons with SBH in the internal market by providing (certain) accessible products and services

What can you do?

  • Spread the message on your social media channels using the hashtag: #AccessibilityAct
  • Say why accessibility is important for you?
  • Post pictures of inaccessible situations to illustrate what the problems are, curbs, buses, atm machines etc
  • Tag in your MEPs and other government officials.

Want more information?

For even more information please visit IFSBH’s website or visit the European Disability Forum

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

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