Elizabeth Grant is 63 and has spina bifida yet she has never let that define who she is! Today, on World Spina Bifida and Hydrocephalus Day she wanted to share some of her own insights into living with a disability and what it means to her.
“I was one of seven children so there wasn’t much time for molly-coddling when I was born! My parents were practical people so when my brothers were doing something my dad would just try to find a solution so I could take part in the activity as well. They always looked for a way that I could do something rather than think I couldn’t.
Because of this, I am as self-sufficient as I can be. That is not to say life is easy as it’s not. Over the years I have been through a lot, about 40 years ago I had my right hipbone removed and for nearly 20 years I have had an open wound which the surgeon can’t do anything about without creating a whole other set of issues. Through all of that the biggest challenge I have faced was losing my husband 12 years ago. We complemented each other so well; it was difficult to deal with.
Despite all of this, I want to show others that life does not stop because of disability. I make sure that I spend my time doing everything that I want to in life, I let nothing hold me back. I go to tai-chi class, I’m involved in my local church, I love my garden, I’m a Cub leader and I have a courageous cat called Jasmine. I even had the opportunity to go canoeing recently and loved it – although thanks to health and safety, by the time I had all the life jackets and harnesses on I couldn’t move my arm to use the oars!”
SBH Scotland then asked Elizabeth what advice she would give to younger people living with disabilities. She continued,
“Don’t let people tell you what you need or want – you know what you want and you know your own condition. It always makes me very frustrated when people tell me what I want, for instance, I use a manual wheelchair and people constantly tell me I need a powerchair. However, I don’t want a powerchair, I am very happy manually pushing myself, so I will continue to do so!
It’s also so important to try and do as much as you can for yourself and fight tooth and nail for the right to do so.”
Many thanks to Elizabeth for sharing her story. #WSBHD
Get involved: It's here the UK Government’s Consultation on Mandatory Fortification of Flour with Folic Acid
What’s this all about?
The issue here is whether the UK Government should enact legislation, covering all four nations, making it a legal requirement that folic acid (Vitamin B9) to be added to most flour produced in the UK.
The UK Government has now launched a public consultation on this topic. Views in favour or against this legislation (or offering advice/evidence) must be submitted before noon on Monday 9 September 2019.
Both Spina Bifida Hydrocephalus Scotland (SBH Scotland) and the Queen’s Nursing Institute Scotland (QNIS) are in favour of mandatory Vitamin B9 fortification of flour. So, too, are the:
- Scientific Advisory Committee on Nutrition of the Food Standards Agency;
- Food Standards Scotland;
- UK’s Chief Medical Officers;
- Scottish and Welsh Governments;
- Relevant Royal Colleges & professional associations; as well as,
- Leading public health & maternal and child health experts across the UK.
There is no equivalent, organised opposition to mandatory folic acid (Vitamin B9) fortification. It is not a party-political issue. However, it is still uncertain whether such legislation will actually be enacted and implemented by this Parliament. There is concern that folic acid (Vitamin B9) legislation will be ‘kicked into the long grass’, given Westminster’s preoccupation with Brexit and other higher priority matters.
The best way to overcome inaction on this legislation at Westminster is to create a groundswell of support for fortification. Most individuals and organisations will not choose to spend the time and energy needed to submit a full consultation response here. However, the choice is not between a full response and none at all. It would be sufficient – and very helpful – for you to submit a message expressing support. More information about how to do so can be found at the end of this Briefing.
What are the essential points?
About Neural Tube Defects (NTDs):
- When all goes well, neural tubes are what eventually develop into a person’s spine and brain. They are fully formed (or malformed) by the fifth week of pregnancy. This is before most women are even aware that they are pregnant.
- If the neural tube of any fetus does not close properly by the 28th day of pregnancy, then it is classified as a neural tube defect (NTD). It cannot be closed or corrected later.
- Sometimes, this NTD is detected by the woman’s own body and the fetus is rejected. That is why NTDs are a leading cause of both miscarriages and stillbirths. While the data are imprecise, it is estimated that more NTDs result in pregnancy loss than in live births. There are at least 1,000 NTD-affected pregnancies in the UK each year.
- If the pregnancy continues until a live birth (approximately 1 in 1,000 births), then the NTD causes a spectrum of life-long conditions, including (but not limited to) spina bifida, hydrocephalus and anencephaly (a fatal condition in which part of the brain is missing).
- All pregnant women are offered free screening for NTDs on the NHS. This non-invasive screening is optional. The point is to offer an informed choice about whether to continue the pregnancy or decide to have it terminated. Many (but not all) women choose to have the pregnancy terminated if a neural tube defect is discovered.
About Folic Acid (Vitamin B9):
- More than thirty years of extensive, internationally validated research has proven that Vitamin B9 can prevent more than half of all neural tube defects, as well as having other health benefits. The cornerstone study on the preventive power of folic acid was led by Professor Sir Nicholas Wald and the results have been widely known since 1991.
- Vitamin B9 is necessary for the healthy development of cells and DNA/RNA. It is available naturally by eating certain green vegetables, e.g. spinach and broccoli. A synthetic version – that is, folic acid -- also provides the Vitamin B9 every body needs.
- People with a healthy, folate-filled diet can acquire the level of Vitamin B9 normally needed by most people. However, the reality is that only a small proportion of people in Scotland have such a diet (even with the tiny amount voluntarily added to cereals and other products), so folate levels tend to be very low among women of childbearing age. Across the UK, 91% of women of childbearing age have blood folate levels below the thresholds indicating elevated risks of pregnancies affected by neural tube defects.
- The level of Vitamin B9 required to prevent NTDs cannot be attained by eating green vegetables. Effective prevention depends upon additional Vitamin B9 from folic acid before and during the first trimester of pregnancy. At the other end of the spectrum, there is no plausible upper limit, after which too much folic acid could become harmful.
About voluntary supplementation:
- Voluntary supplementation with folic acid – i.e. taking folic acid tablets every day on an optional, individual basis – has been strongly advocated and tried throughout the UK for more than a decade. This voluntary strategy has failed to significantly reduce the occurrence of neural tube defects.
- Worse, the voluntary supplementation schemes increased health inequalities. That’s because the women most likely to take adequate amounts of folic acid regularly, and far enough in advance of becoming pregnant, tended to be in the upper half of the socioeconomic spectrum. So, those in the lower half also are likely to have the lowest Vitamin B9 levels when becoming pregnant.
- Timing is crucial to benefit from the preventative effect of Vitamin B9. It takes many weeks for anyone to build up the amount of Vitamin B9 that will greatly lower the risk of NTDs. So, folic acid must be taken regularly at least three months before conceiving and continued daily at least through the first month of pregnancy. Waiting to take folic acid supplements until pregnancy has been confirmed is simply too late to prevent NTDs; a health version of ‘closing the stable door after the horse has bolted’.
- Another major pitfall for voluntary supplementation is that nearly half of all pregnancies across the UK are unintended/unplanned. Reaching health goals – such as increasing Vitamin B9 levels – during the preconception period is almost impossible when it is unknown when (or if) a pregnancy will begin.
About mandatory fortification:
- Adding folic acid to most UK manufactured flour is the most inexpensive, effective, efficient and egalitarian way to achieve the Vitamin B9 level needed for NTD prevention to have a chance.
- Years of continuing scientific research and evaluations of the lived experience in over 80 countries already fortifying flour (for decades in some nations) have demonstrated there are no significant ill-effects or negative consequences of folic acid fortification.
- For more than half a century, most flour produced in the UK has already been – and still is -- fortified with four other healthy ingredients: calcium, iron, niacin and thiamine. In fact, two of these helpful ingredients are also B vitamins; thiamine is Vitamin B1, while niacin (nicotinic acid) is Vitamin B3 – just as folic acid is Vitamin B9. Each performs a different, non-duplicative function in improving nutrition and preventing deficiencies. The addition of folic acid merely replaces the natural folate extracted during the milling process.
- There are detailed issues remaining to be resolved when enacting and enforcing legislation requiring folic acid fortification. For instance, determining how much folic acid to add to have the desired preventative effect - or deciding which flours (or other foods) will be included/excluded - are now under consideration. The current consultation is meant to gather views and evidence addressing such specialised matters.
The most fundamental goal of this UK Government consultation is to solicit views about whether to implement folic acid fortification at all. That is where most individuals and organisations reading this Briefing will fit into the picture.
To make your and/or your organisation’s views known, please write a letter or email expressing them. While you are welcome to use any of the information contained in this Briefing (including other sources listed at the end), please remember that it should be in your own words, rather than copied. Individual, bespoke messages are usually taken seriously. However, ‘cut and paste’ ones tend to be dismissed.
If you do not want to contact the key people directly, then you are welcome to send your message to Andrew H D Wynd MBE, MIoD, Chief Executive, SBH Scotland or to Dr Jonathan Sher, Deputy Director, QNIS
They will send it on your behalf, along with others received, to the following relevant officials:
Matt Hancock MP, Secretary of State for Health and Social Care
Chris Skidmore MP, Minister of State for Health
Jo Churchill MP, Permanent Under Secretary of State for Health and Social Care
Baroness Blackwood, Permanent Under Secretary of State for Public Health (Lords)
Members of the All Party Parliamentary Group (APPG) on Folic Acid Fortification, Westminster
Owen Smith, Chair; Nigel Dodds, Co-Chair; Lord Rooker, Lord Baffe, Vice Chair; and, Lord Rooker, Vice Chair (former head, UK Food Standards Agency), plus Kate Steele (APPG Secretariat and Chief Executive, Shine charity)
Health Spokespeople in the House of Commons for other parties
SNP: Dr Philippa Whitford, MP; Labour: Jonathan Ashworth MP; Lib Dems: Judith Jolly MP and Jo Swinson MP (Leader); DUP: Jim Shannon MP; Greens: Caroline Lucas MP; Independent: Dr Sarah Wollaston (Chair, House of Commons Health Committee)
Minister for Public Health – Joe FitzPatrick, MSP
Chief Medical Officer – Dr Catherine Calderwood
Other reference sources:
British Dietetic Association: https://www.bda.uk.com/dt/articles/folic_acid_fortification_uk
Faculty of Public Health: https://www.fph.org.uk/media/1384/position-statement-folic-acid.pdf
SACN (for Food Standards Scotland): https://www.gov.uk/government/publications/folic-acid-updated-sacn-recommendations
Articles by Dr Linda de Caestecker and Dr Jonathan Sher: https://www.holyrood.com/articles/comment/folic-acid-bread-barn-gates-and-neural-tubes
and with Prof John Frank and Dr Larry Doi: https://academic.oup.com/jpubhealth/article/41/2/e209/5076112
IF Call for applications for their 4th Youth with SBH "MY RIGHTS" Workshop (Estonia, 17-20 August 2019)
Last year two SBH Scotland members were accepted onto the International Federation for Spina Bifida and Hydrocephalus (IFSBH) workshop on your rights as a young person living with disability. Cailin and Murrin (pictured) both thoroughly enjoyed the experience. Now the IFSBH are asking for people to apply for this years FREE workshop.
Apply to take part in an exciting training opportunity, designed to support participation and independent living of youth with spina bifida and hydrocephalus!
Are you a young person (aged 18-35) living with spina bifida and/or hydrocephalus (SB/H)? Are you a member of a SB/H group or would like become one? Then you are welcome to apply for this free training!
This FREE 4-day training for young people with SB/H will take place on 17-20 August 2019 in Tallinn (Estonia).
Why this training?
Because young people with disabilities, including SB/H, are often subject to discrimination and prejudice. Sometimes, the society does not see them as valuable and equal citizens. If you have a disability, it may be more difficult to go to a university, get a job, or travel independently. You may be prevented from speaking for yourself, and the family or professionals get to make the decisions about your life.
The International Federation want to change that!
The aim of this training is to support you, a young person with a disability, in your journey towards self-confidence and independence! The training keywords are citizenship, leadership and full participation.
What is this training about?
During the training you will learn about the rights-based approach to independent living for youth with disabilities, ways to defend your rights in daily situations and cultivate your ability to make your voice heard
Our team of international experts will help you understand the human rights of persons with disabilities, how you can use the UN Convention on the Rights of Persons with Disabilities (and why you, as a young disabled person, should know it), and provide you with practical tools on activism.
In addition, the training will provide safe space discussions on issues, such as body image, sexuality and mental health.
You will develop a personal action plan to help you advocate on an issue you feel passionate about.
Who should take part in the training?
Young (18-35) people living with SB/H who:
- Want to be more active in their local SBH groups (or would like to start a group) and need skills to support them
- Are committed to organising an activity to promote independence and participation of young people with SB/H in the local community
- Are prepared to embrace the intensity of the course, and not remain its passive listeners
- Are able to attend the full duration of the training course (4 days)
- Are prepared to organise a local level activity (write articles, organise a workshop, meet with decision-makers…) using the knowledge received at the training
- Have a working level of English (able to speak, read and write it)
How long will the training be?
4 full working days. The programme will be designed to include some rest and entertainment time as well.
17-20 August 2019. Arrival is foreseen for 16 August, and departure on 21 August.
Laulasmaa, 35 km from Tallinn (Estonia). (We organise local transport, don’t worry!)
Participation in the training for selected participants with SB/H is free of charge. Your travel, accommodation (5 nights) and meals during the training will be paid for.
How to apply?
Fill out the application form by 15 July 2019. You will be informed of the outcome of your application on 17 July 2019.
A Glasgow family has raised more than £21,000 for Spina Bifida Hydrocephalus Scotland, in memory of their brother who had spina bifida.
Michael McGill (pictured below), would have been 50 years old on 10 February, but sadly passed away last April.
To celebrate his life, Michael’s brother, Paul McGill, organised an event at Glencairn Social Club, which was attended by more than 300 people, including close friends, family members and people from the local community.
As well as paying tribute to Michael, the family raised funds for SBH Scotland, an organisation providing personalised support to children, young people and their families affected by the lifelong conditions of spina bifida and/or hydrocephalus.
With the support of a number of local businesses, the McGill family held a silent auction and raffle, where one lucky attendee won a round trip to New York and another picked up a signed Celtic football shirt.
Paul said: “Michael’s life was full of love, joy and laughter, and I know he would have had a ball at his 50th birthday party. It was a really special evening, and to have all his friends and family together would have put a big smile on his face.
“While Michael was born with spina bifida, he remained very independent and mobile. With a big family support network, he didn’t require the services of SBH Scotland but was aware of the great work the organisation carried out in the community.
“To honour his memory, we’ve made it a family mission to raise as much as possible for the charity. Last year we were able to donate £6,000 bringing the total amount raised so far to £21,600. But we’re not stopping there - some of the family will be doing the SBH Scotland Skydive this summer.”
Deborah Roe, fundraising director at SBH Scotland, said: “By all accounts Michael was a kind-hearted, fun-loving and inspirational individual, who proved every day that spina bifida doesn’t need to stop you living a full and happy life.
“For his family to take on so many ventures to help others affected by the conditions is incredible, and I would like to thank them for what they have done for our organisation.”
To donate to the McGill family fundraising efforts please visit www.justgiving.com/fundraising/paul-mcgill4
Find out more about supporting SBH Scotland
News broke last week of the first Scottish pregnancy to undergo the in utero fetal surgery for spina bifida. But what is this surgery and what does it involve?
When a baby is born with spina bifida their spinal cord is exposed and babies are operated on immediately to close the lesion. However, with the in utero fetal surgery, this operation takes place much earlier.
The surgeon opens the uterus, exposing the spina bifida without delivering the baby. The defect is then closed up and uterus repaired.
Although neither treatment (pre or post birth) can fully cure the condition, early repair of the lesion may prevent further damage of the spinal cord which can lead to better outcomes for the baby's involved.
This is not a new surgery but one which has been performed for many years in the USA and more recently in Europe. The end of 2018 also saw Great Ormond Street Hospital in London undertake their first operation.
What next? Can any expectant Mum in Scotland whose baby has spina bifida have the surgery?
The following information will continue to be updated but the current position in Scotland is that:
Any Mum-to-be who would wish to find out more in relation to her options should, in the first instance, speak to their consultant as quickly as possible and in any event as soon after the 20 week scan as possible. The consultant or specialist will spend time with you and explain the options available in your case and give you time to come to a decision as to the best way forward.
The current eligibility criteria for consideration for surgery is quite restrictive and Mums to be need to be clear about the risks involved in the surgery for themselves as well as their baby. Speak to your consultant or other health specialist to ask them to assess whether or not you would be eligible for surgery. This is a complex assessment which looks at amongst other things the current health or both mum and baby, the type of defect on the spine, its location and whether or not there are other complications.
Importantly, only after a full assessment has been carried out by your consultant/specialist and any questions you may have as a result of the discussion, will all of the available options for you to consider be shared with you. You will then be given some time to consider these options before you agree on a way forward.
SBH Scotland staff will be available to you to speak to at any time throughout this process. Please feel free to contact them on 03455 211 300 or email them at any time.
Most professionals will be more than happy if you want to bring a partner, friend or colleague along with you to any of the meetings. SBH Scotland staff are also available to support you during this time. They are also more than willing to attend any consultations.