Quick links:
Join us in Bristol to hear from some leading experts and specialists from a variety of healthcare professions, who work with OA/TOF patients. It is also a great chance to chat with other members; meet the TOFS volunteers and staff team and meet other charities/associations representing other medical anomalies. All adults and children (over age 13 years) born with OA/TOF, parents, relatives, and healthcare professional’s welcome!
As this is an afternoon event, there will be tea and coffee for refreshments during the breaks, no food will be provided. The conference sessions are not appropriate for young children under the age of 13, and there will not be a creche. However, we understand some members will need to bring their young children, so we ask that you plan to have someone else attend with you, who is able to look after them whilst you are in the sessions.
Registration on the day opens at 12:15 and the presentations will begin at 12:45.
We look forward to seeing you there!
Schedule
12.15
| Arrival & registration |
12:45
| Welcome |
12:50
| TOFS
|
13:00
| The Lost Twin Hypothesis |
13:25
| OA/TOF: from birth to 5 years & Surgical-PEARL project update |
13:55
| Refreshments & chat |
15:00
| Advancement in the instrumental assessment of swallowing in paediatrics |
15:30 | Personal experience of OA/TOF transition & Southwest NHS approach |
15:55
| Discussion session |
16:25
| Final remarks & close |
Speaker biographies
Dr Charles Shaw-Smith
Dr Charles Shaw-Smith is a Consultant in Clinical Genetics at Royal Devon University Hospital. He was, from 2006 to 2010, a Wellcome Trust Intermediate Clinical Fellow, based at the Sanger Institute and Department of Clinical Genetics at Addenbrooke’s Hospital in Cambridge. This four-year award enabled him to focus attention on his main research interests of genetic factors in oesophageal atresia and the VACTERL association. Since 2010 Charles has been based at the Royal Devon University Hospital and Peninsula Medical School in Exeter, where he continues to have a clinical interest in oesophageal atresia and related malformations, and is currently working on the ‘Lost Twin’ study to try to improve understanding of the causes of OA/TOF.
Miss Clare Skerritt
Clare is a Paediatric Consultant Surgeon at Bristol Royal Hospital for Children. She has also contributed to a range of research projects including the Surgical-PEARL protocol, a multicentre study exploring aetiology management and outcomes for patients with congenital anomalies potentially requiring surgical intervention.
Emma Griffiths
Emma qualified from the University of Bristol in 2017 and has worked as a doctor in both the UK and New Zealand. She specialises in Obstetrics and Gynecology and is currently undertaking a PhD in Fetal Medicine looking into improving diagnosis and care for babies with congenital anomalies that require surgery after birth. In her spare time she loves cooking and taking her husband on adventurous holidays!
Helen Marks
Helen is the Lead Speech and Language Therapist at Bristol Children’s University Hospital. Helen has been working for almost 20 years with OA/TOF patients in Bristol and with the TOFS charity to try and raise the awareness of the role of speech and language therapists in their feeding and swallowing journeys.
She is particularly interested in supporting SALTs in the community, who may not see as many of these patients as they do in a regional hospital.
Helen’s specific clinical interest is with OA/TOF patients with associated upper airway problems such as vocal cord palsy and tracheomalacia. Along with her SALT, nursing and surgical colleagues on the NICU, they have successfully introduced Sham feeding for some of our long gap babies, using a replogle tube and we are very proud to be the first unit in the UK to do this with a breast-feeding baby.
Carole Melia
Carole is the Transition Lead at Somerset NHS Foundation Trust and was a volunteer family support worker at Bristol Children’s hospital. Before this role she was a college lecturer and senior manager for 40 years including student support and received a postgraduate diploma in health promotion. Carole has also been a TOFS member for many years, being a parent to her 36-year-old daughter, Hannah, born with OA/TOF. She continues to advocate on behalf of her daughter and other OA/TOF adults to improve transition for patients and receive the right care they need.
How to get there:
The seminar will be held at St Michaels Centre, The Green, Stoke Gifford, Bristol, BS34 8PD.
It is also only a 3-minute walk or 2-minute drive from Bristol Parkway, with good train services from (amongst others) Manchester, Liverpool, Birmingham, London, and Glasgow.
Bristol Airport is a 30-minute drive away from St Michaels Centre.
This is very close to the M4/M32 junction. There is on-street parking on North Road, The Green and other surrounding roads. Some on-street parking may have restrictions so please note these before leaving your car. Next door, Bristol Parkway Station has a large multi-story car park that is open for all, only a 3-minute walk away from the Centre. This is by far the easiest and best parking option.
Do have a look at the map below for accessible parking spaces at St Michael’s, and their website for further information how to get there.
Nearby places to eat:
St Michael’s Centre has The Coffee Shop on site, a great place to grab some lunch ahead of the event. They are open on Saturdays 10am-2pm.
Additional places include:
- The Beaufort Arms, Stoke Gifford
- Abbeywood Retail Park, Stoke Gifford
- Winter Stream Farm, Hambrook
- The Fox Den, Stoke Gifford
- The Gifford Beefeater
Nearby places to stay:
Accommodation in the local area includes:
- The Village Hotel, Bristol
- Holiday Inn Express, Filton
- Travelodge, Filton, Bristol
- Double Tree by Hilton, Bradley Stoke
- Aztec West Hotel & Spa, Almondsbury
Any Questions
How much are tickets?
Tickets are free to TOFS’ Members, Associates and Health Professionals. If you wish to join TOFS, please sign up at – https://tofs.org.uk/join-tofs/
Though there is no charge to members, the event has a cost to TOFS, so please let the office know if you book and then can’t attend.
Where can I book my tickets?
You can book your tickets at: https://buytickets.at/tofs/1435152/r/TOFS
Is there a cancellation deadline?
Yes. If you can no longer attend, please let us know via info@tofs.org.uk no later than 3 days before the seminar.
Can I watch the seminar online?
This is an in-person event only and will not be live streamed. We encourage members to attend in person to get the full benefits of the event, listening to the speakers; interacting with the Q&A and discussion sessions; meeting other organisation representatives and TOFS volunteers; and chatting with other members of TOFS who will be attending.
Some of the presentations may be recorded and posted online at a later date.
Is this a TOFS party?
No, this is an information seminar.
Can I bring my child/children?
You may prefer not to as we kindly ask only children over the age of 13 years to attend. The conference sessions are not appropriate for children and there will not be a creche. Parents/ guardians are responsible at all times for their children/teens.
Will there be lunch?
No, but there will be tea, coffee and biscuits available during the refreshment breaks. You may also bring small snacks with you to the venue.
Will I get a chance to speak to other families / people affected by OA/TOF?
Yes, we will have an extended refreshment break to allow you a chance to chat with other members, talk to representatives of other organisations, and TOFS volunteers.
Is there wheelchair access?
Each room at St Michael’s Centre is accessible through using lifts and ramps. Doors and corridors are wide enough for standard wheelchairs. If you have any disability that may affect your access or participation in the event, please let us know when ordering your tickets.
If you have any further questions, please send them to us at info@tofs.org.uk
