When and why did you first get involved with NCT?
During my first pregnancy in 1980, a close colleague at work said John and I must go to NCT antenatal classes. We went, and I found the classes absolutely invaluable. I also found the coffee groups a great way to make friends after the birth and it was ideal for helping our babies meet and interact with each other. We moved from Hertfordshire up to Lancashire when our son was just 11 months old, and again the NCT coffee mornings and meetings were invaluable at helping me make friends in a new part of the UK. Some of these people are still my close friends today – 36 years later!!!!!
I had found the NCT antenatal classes so valuable that I decided to train as an NCT teacher (as we were known in those days). I began training after our second son was born and began teaching just after the birth of our third son. I so enjoyed the antenatal teaching – and took on a role to help organise the teacher ongoing assessments. This brought me into contact with staff at NCT headquarters in London and with many volunteers who came to HQ for various reasons.
When and how did you get involved with NCT research and/ or maternity services activity?
My links with NCT HQ made me aware of the NCT Research and Information Group (RIG), and having a background in biochemistry and haematology, brought an invitation to join RIG. This group comprised of NCT volunteers with many different research backgrounds, including an obstetrician and a midwife, and we had staff in support. I found this work stimulating and so interesting – we commented on research proposals and research findings that were relevant to pregnant women, and we also wrote evidence-based Information Sheets for NCT practitioners. We were impressed with the Critical Appraisal Skills Programme (CASP) workshops developed in Oxford, and began running these workshops for NCT at Regional days. I took over as chairperson of RIG when Sandy Oliver stood down. The volume of work as chairperson became too much for a volunteer so NCT took the wise step of having a member of staff to chair and lead the group with the volunteers there to support the staff. As time has moved on – so this group has evolved to the current Research Advisory Group. I was also on my local MSLC for many years, trying hard to get women’s voices heard, but the research side had become my passion.
What have you learnt from the different projects you have been involved with?
I have learned so much and maybe most importantly the value of multi-disciplinary research – so bringing people from different areas of research, medicine and social care together with women and parents. I have also learned how important it is to help clinicians consider research studies from the woman’s viewpoint, in particular the outcomes that are important to women are often not apparent to clinicians and researchers. Also I have learned how difficult some research studies can be, even when the question seems it should be easy to answer. I also learned from being on NICE and WHO clinical guideline groups – about how difficult it can be sometime to develop recommendations when the research is not of high quality and also when there is embedded clinical practice developed before the research findings are available.
How do you feel they have contributed to improving care for parents and families?
I think NCT has contributed considerably to research-based improvements in clinical care through liaising with researchers and clinicians, and through participation in NICE and WHO guideline development groups. When I went back to work I was very lucky to get a part-time job with the Cochrane Collaboration Pregnancy & Childbirth Group (CCPCG) as their Consumer Coordinator, bringing women’s and parents’ perspective to the Cochrane reviews. There were many routine practices in use when I had our first son (routine shave, enema, episiotomy etc.) all of which evidence now shows do not improve outcomes for women and babies, and which through Cochrane, NICE and also with NCT input, are no longer routine practice. Linking CCPCG with NCT has been really helpful to both organisations and hopefully these links will continue. Also, we have helped clinicians and researchers use language that is more acceptable and understandable to women, for example: to use ‘birth’ rather than ‘delivery’; not to use ‘elderly primagravida’; to avoid using words as adjectives to describe women, so rather than ‘high risk women’ to say ‘women an increased risk of complications’. To consider outcomes in research which are important to women; to think about the ethics of recruitment to trials and whether women would or would choose not participate in particular clinical trials.
What would you say to anyone who is feeling nervous about becoming a user rep?
It may take a little time to settle in, but enjoy it, you’ll learn much as well as contributing. You don’t need a research background, you just need to be interested in research and its capacity to change care for women for the better. Everyone brings different expertise to the table, and everyone’s suggestions are worth consideration and discussion. The more people who can contribute the richer the outcomes will be.