As well as our day to day work delivering services and providing support, we continue to position ourselves at the forefront of lobbying and campaigning on issues of importance to Shine members.
Each week on average 14 women in the UK receive the devastating news that their baby is affected by a Neural Tube Defect (NTD) such as spina bifida or anencephaly.
While the risk of developing neural tube problems cannot be eliminated, it can be greatly reduced by taking folic acid at least three months prior to conception, as well as the first three months during pregnancy. Coupling this with vitamin B8, inositol, appears to further reduce the risk.
Shine is therefore urging the government to introduce the mandatory fortification of flour with folic acid, a practice which has seen a reduction in the number of pregnancies affected by neural tube defects in each of the 81 countries which currently fortify flour.
The devolved governments in Scotland, Wales and Northern Ireland are in favour of this change, but the government in England has yet to move forward on this issue.
In the meantime, Shine is urging women of childbearing age to take folic acid and vitamin B8 supplements pre and post pregnancy to reduce the risk of neural tube problems for their unborn child.
Folic acid is also important for the synthesis of red blood cells and healthy DNA, hair, nails and skin in adults. Deficiencies in adults risk harm to their health including a form of anaemia, so there are likely to be significant additional health benefits of fortification.
New research indicates that the previous recommendation of a 'safe upper limit' of folic acid intake has also proven to be unfounded, removing the last barrier to the introduction of fortification.
Prescription Charges Coalition - Shine is an active member of the Prescription Charges Coalition, a group of more than 40 organisations campaigning to end prescription charges for people with long-term medical conditions. This is a significant issue for many of our members who face a variety of inequalities due to the complex criteria which determines exemption from such charges. According to the coalition, at least a third of people with long term conditions cannot afford to collect all their prescriptions. This can harm their health and lead to further GP and hospital appointments, adding cost for the NHS. For more about the Coalition see http://www.prescriptionchargescoalition.org.uk/ and to sign up to the petition: https://e-activist.com/page/19623/petition/1
Shine is a member of this partnership with more than 40 disability and children’s charities working together to improve health and social care for disabled children, young people and their families. The DCP’s campaign, the ‘Secret Life of Us’, aims to raise awareness of the lack of access that still exists in our society for many disabled people. For more information and to get involved see https://disabledchildrenspartnership.org.uk
Timely orthotic wear is a challenge for some of our members, and Shine has been a supporter of Rebecca Loo’s campaign from the start. Inspired by her own poor experiences, Rebecca has worked tirelessly to bring about change to the NHS orthotics services, leading to improvements in how children access braces, boots and callipers to aid their mobility. If you’d like to pledge your support, email info@orthoticscampaign.org.uk or visit www.orthoticscampaign.org.uk for more information.
Shine has been campaigning to save the Chelsea and Westminster Adult Spina Bifida Clinic, which announced its intention to close in July 2017. Shine members have written, lobbied, signed a petition and given personal accounts of the positive difference the clinic has made to their lives, as specialist care for complex health conditions is so hard to come by. The hospital confirmed that the clinic will be continuing for another 12 months whilst they explore options for a sustainable alternative. However, the challenge isn’t over and we await news of next steps.
For details of Shine's position on the following issues that relate directly to our vision and aims, view our Position Statement