Two brothers with a rare genetic condition have become the first to benefit from a virtual telemedicine clinic at our Children’s Hospital.
Joshua and Ryan Eccles, aged 15 and 11, both have Bardet-Biedl syndrome and recently ‘attended’ their consultation appointment with our expert multi-disciplinary team from the comfort of their home in Wednesbury thanks to the use of the digital technology.
Their condition, which affects 1 in 300,000 people, causes a number of issues including retinal dystrophy (blindness), sensorineural deafness, infancy onset obesity, cystic kidneys, and development and behaviour issues. All this means that travelling to Birmingham from the family’s Black Country home can be difficult.
To avoid attending multiple appointments, the NHS England Bardet-Biedl multidisciplinary clinic set up a national service, delivered at BWC in partnership with fellow BHP member University Hospitals Birmingham (as well as Great Ormond Street Hospital and Guy’s and Thomas’s) to deliver combined clinics for young people and adults in optometry, ophthalmology, diabetes, endocrinology, nephrology, psychology, dietetics, genetics, and transitional care. This is a ‘one stop shop’, where families can see all the specialists in one visit.
However, as this clinic runs just eight times a year, our consultants worked with NHS commissioners and staff in BWC’s Waterfall House Rare Disease Centre to put in place our hospital’s first telemedicine clinic of its type for patients.
Through Zoom video conferencing, set up by our IT team, they were able to link with the whole family via an iPad on their kitchen table.
Mum Claire Eccles, felt the virtual clinic brought real benefit. She said:
“Joshua and Ryan normally attend a clinic, which is a whole day of appointments and it can be stressful for them and a tiring day for me.
“I felt the telemedicine clinic was really good for us as a family. We got as much done as we would have in clinic but in the own comfort in our home. The boys loved it and they were also able to do some of it independently, which was brilliant.
“We are so lucky to have such a great team of specialists and we’d like to say thanks to all involved.”
One of our team that helped put the clinic in place was Professor Timothy Barrett, Consultant Paediatric Endocrinology and Diabetes at BWC. He said:
“The clinic was a huge success. It was delivered with specialists in endocrinology, diabetes, and dietetics, along with Ms Amy Clapp from the family support group BBS-UK.
“Thanks to our NHS commissioners, and with great support from our fantastic IT department, we were able to see and hear Joshua and Ryan and Mrs Eccles, which helped us have important discussions around their medical, emotional and educational needs.
“This clinic model does not replace face to face appointments, but does offer an option for families who find travelling to Birmingham difficult. It also has to potential to address NHS waiting times for outpatient appointments.
“Both Claire and her boys found the experience useful. We were able to come up with a list of action points to take forward with their GP, school and other local services.”
Following the success of this clinic, work is now taking place to deliver further virtual clinics across BWC.