We were very pleased to welcome over thirty families from all over the UK to the third BTF Children’s Conference which took place in Birmingham in June 2019. The families travelled from all over the UK and included over 25 children aged between a few months and 14-years old.
The morning began with a talk by Dr Renuka Dias, Consultant Endocrinologist at Birmingham Children’s Hospital who gave an overview of the thyroid, how it works and why it is so important. She then spoke about congenital hypothyroidism (or CHT, the most common endocrine disorder which can affect children) and acquired hypothyroidism, and how these conditions are diagnosed and treated. Dr. Kristien Boelaert, Consultant Endocrinologist at University Hospital Birmingham NHS Foundation Trust then spoke about hyperthyroidism and how it is managed. We were also fortunate to have an overview of the newly published draft NICE Guideline on Thyroid Disease and how it affects the care and treatment of children and young people.
The patient experience was also an important part of the day and at the end of the morning session we listened to the experiences of two young people, Ella Cudmore who was diagnosed with hyperthyroidism at 13, and Joe Straw, BTF Trustee who was born with CHT. Joe gave an inspirational account of some of the challenges he’d faced as a teenager with a thyroid disorder.
After lunch Prof Tim Barrett, Consultant in Paediatric Endocrinology, Birmingham Children’s Hospital discussed two case studies which illustrated the impact puberty can sometimes have on thyroid disorders. He explained that many children are referred to paediatricians between 12 and 16 years old as a result of a noticeable change in their behaviour at school, e.g. having lost enthusiasm for things, falling asleep on the school bus or in lessons, or falling behind in school work. The physical symptoms that young people may present with may include severe constipation, delayed puberty or being very pale and having a low blood count. Prof Barrett also gave a talk about the managing the transition from children’s to adult services and finding tools to help young people take control of their condition. Young people he’d looked after had reminded him about the importance of treating them as an individual and not just as a patient with thyroid disease. He recommended that parents and young people ask their doctor about what resources the local hospital may have which would support them through the transition period.
While the parents were listening to the puberty talk there was a fantastic workshop session in which the children had the chance to talk about their own experiences and frustrations with their diagnosis. They also raised their own questions. These questions formed the basis for a new Frequently Asked Questions document which has been produced as the result of this session.
Managing the psychological symptoms of thyroid disorders is a challenge that many families face and so it was very interesting to hear from Dr Sue Jackson, Chartered Psychologist and Michelle Griffiths, a BTF local support group volunteer and Trainee Health Psychologist. They talked about the importance of recognising the symptoms, normalising (or addressing and validating every day stresses that young people may be feeling), listening and communicating with them, and encouraging a healthy lifestyle (with good quality sleep and diet). This was a useful reminder that good mental health is an important part of our overall health and well-being and is just as important as physical health.
During the afternoon parents learned about an important research project into CHT being carried out by Dr Pia Hardelid, an epidemiologist at Great Ormond Street Hospital. We learned that the numbers of babies born with dyshormongenesis (the type of CHT where the thyroid is not producing hormones correctly) is increasing. The reasons for this are not yet well understood therefore Dr Hardelid and her colleagues are hoping to understand
- what child and family characteristics are likely to be associated with dyshormongenesis
- whether these children are likely to be in similar health to other children
- whether these children do as well in school as other children
The final session of the day was a presentation from 13-year old Chloe Boon who has CHT who spoke about how she managed her diagnosis and how it made her feel. This was of particular interest to the other young people who listened attentively and certainly appeared to identify with Chloe’s experiences.
Amongst the positive feedback received about the event were the following messages:
‘The day was a really brilliant opportunity for our 7-year old to finally meet other kids with CHT.’
‘My daughter really enjoyed the children’s session and having an opportunity to speak ‘in her own space.’
‘Brilliant day and really useful for our daughter to know she is not ‘different’’
‘Really beneficial for my teenager to understand and take her condition more seriously.’
‘Thank you for such an informative day, this has reassured me and my husband.’
‘All of it was useful but hearing about puberty and transition and from the psychologists was particularly useful.
We are very grateful to the families who attended the meeting, to the volunteers, and all the speakers who kindly gave up their time to take part and answer the many questions raised throughout the day.
We would also like to thank the National Lottery Community Fund who generously awarded us a grant towards to help cover the costs of this meeting.
Some of the presentations from the day are available through the links below: