Following the success of the BTF’s first meeting for families which took place in Leeds in 2014, we were delighted to host a second meeting in Central London on Saturday 13 May 2017.
Twenty six families from all over the UK attended the meeting in Westminster and with them brought twenty one children aged between 12 weeks and 15 years old.
Dr Catherine Peters, Consultant Paediatric Endocrinologist, Great Ormond Street Hospital (GOSH) started the day with a talk about the thyroid axis, hypo- and hyper-thyroidism, and an overview of symptoms and treatments. Shirley Langham, Clinical Nurse Specialist at GOSH then spoke about congenital hypothyroidism (CHT) and the screening programme at their hospital.
Dr Jane Chudleigh, Lecturer in the Child and Adolescent Nursing Department, City University reported on her current project which is a review of the UK Newborn Bloodspot Screening Programme.
There was a fantastic workshop session which was led by one of the nurses where the children were invited to talk about their own experiences and frustrations with their diagnosis. Some of the insights about what they have to cope with – particularly with regard to the way schools manage the impact of their diagnosis – have given us an important steer as to next steps for the BTF Childrens’ Project.
In the afternoon Dr Nadia Schoenmakers, Wellcome Intermediate Clinical Fellow and Honorary Consultant Endocrinologist, University of Cambridge and Greta Lyons, Thyroid Research Nurse Specialist, University of Cambridge gave a fascinating insight into what genetic research is teaching us about the thyroid.
One parent’s perspective was presented Barbara Neve whose four year-old daughter Olivia has CHT, and Joe Straw shared his moving experience of growing up with CHT.
We are very grateful to our excellent speakers who gave up their time and presented such interesting and helpful information. Parents raised many interesting questions throughout the day and each was answered clearly and thoughtfully.
Amongst the positive feedback received about the event were the following messages:
‘It was good to know there are other families facing the same difficulties as we do and lovely for our daughter to be able to go off and chat with other children who she said had similar experiences as she has had.
‘Thank you for a very informative and productive event. As we are newcomers to this condition (our daughter is only 3 months old) it was fantastic to hear from medical professionals and from those with first hand experience.’
‘I wasn't really prepared for how good it would be just to meet people in a similar situation and the talks were all so informative and interesting. I was so glad we came.’
Suggestions made during and following the meeting have helped us identify next steps for the BTF Children’s Project. In particular we would like to produce a short leaflet specifically aimed at teenagers and young adults. Many parents and children reported that they face a challenge explaining how a thyroid condition can impact on a young person’s school life and we believe a resource that can be passed to teachers to improve awareness and understanding would be a valuable addition.
We are also grateful to the British Society for Paediatric Endocrinology and Diabetes (BSPED) who gave us a grant to help cover the costs of this meeting.