Why an involvement in the pregnancy and newborn screening (PNBS) standards was so important to SBH Scotland.
For over 50 years Spina Bifida Hydrocephalus Scotland (SBH Scotland) have supported and provided information to the individuals and families in Scotland who are affected by the neural tube defect, Spina bifida. We also support those affected by hydrocephalus as an allied or sole condition. We work closely with parents from the 20 week scan when a spina bifida parent’s journey begins and no matter where their journey may lead them we are always there.
SBH Scotland welcomed an invitation to be involved in offering our feedback on Healthcare Improvement Scotland’s draft pregnancy and newborn screening (PNBS) standards. The standards themselves specify a minimum level of performance for pregnancy and newborn screening services and will apply to all screening services in Scotland, where directly provided by an NHS board or secured on behalf of an NHS board.
Whilst the PNBS’s work covers a suite of standards including Fetal Anomaly, Haemoglobinopathies, Infectious Diseases, Newborn Bloodspot and Newborn Hearing, SBH Scotland were asked to feedback specifically on fetal anomalies and their current screening process.
In July 2018 we hosted our consultation session for the Healthcare Improvement Scotland team to offer our thoughts based on decades of first-hand experience working with parents and family members who have been through the fetal anomaly process across Scotland.
“I was so proud to see the passion of our staff, and the care they have for our families shone through in discussions. I hope that by being involved in this consultation process that we have eloquently advocated for our parents.”
Taking place in our head office and family support centre in North Lanarkshire, the SBH Scotland participants included board members who are medical practitioners, and family support workers who intensively support parents directly impacted by the standards.
SBH Scotland have long had concerns over the information which is readily available to expectant mums on spina bifida at the point of diagnosis during the fetal anomaly scan. As this takes place, at the 20-week mark, it is half way through the pregnancy. Choices are given as to whether the mum-to-be would like to continue with the pregnancy and any decisions have to made expeditiously, and, in many cases before the mum has been to see a specialist to discuss the scan in further detail.
In the 12 months prior to the consultation our East support team had independently started small focus groups with mums on the topic of ‘experience at diagnosis’ in the hope of being able to influence change in the current system. We were able to share our qualitative information which showed that SBH Scotland families’ experiences have not always been positive in terms of factual and current information being delivered. We believe strongly that wherever an important decision is to be made then informed choice is paramount.
“With the knowledge that the standards have been published, I am hopeful that our input, alongside a range of other organisations, will make a positive change for future generations of pregnant women and their unborn children.”
I was so proud to see the passion of our staff, and the care they have for our families shone through in discussions. I hope that by being involved in this consultation process that we have eloquently advocated for our parents. It was certainly an incredibly positive experience for our staff team and board members to have their knowledge and experience recognised and I feel the continued inclusion of third sector organisations in such consultations should be of paramount importance.
With the knowledge that the standards have been published, I am hopeful that our input, alongside a range of other organisations, will make a positive change for future generations of pregnant women and their unborn children.
Andrew H D Wynd MBE – Andy Wynd has spent most of his working life in the Scottish voluntary sector, supporting children, young people and families. He joined Spina Bifida Hydrocephalus Scotland (formerly known as Scottish Spina Bifida Association) in 1989 and is their Chief Executive and Company Secretary.