Moebius Multi-Disciplinary Clinic at Alder Hey

September 19, 2024

After 3 years of unilateral facial palsy and a lack of abduction in her eyes, my daughter was diagnosed as having Moebius syndrome – firstly suggested by our local ophthalmologist, and then confirmed by a neurologist. Discovering that there was one specialist team in the UK, I asked our GP for a referral to Mr Fattah and his team at Alder Hey. They happily obliged, and so began our journey. We met Mr Fattah for an initial appointment, where he confirmed the diagnosis for my daughter and we discussed our main concerns. You can read more about what to expect from a visit to the Alder Hey facial palsy clinic here.

Fast-forward six months and we received an invite to the Moebius multi-disciplinary clinic. During the interim, we have had a video call appointment with a specialist facial therapist and a telephone appointment with a speech and language therapist. Both of these calls were very informative, and provided us with a wealth of information about how best to support our daughter and what we should be doing to help her with future interventions.

Prior to the multidisciplinary appointment, we received a pack in the post. This included a couple of surveys about who currently is involved in our daughter’s care, our current concerns, and what we wanted to focus on during our appointment. This was a really useful task to complete to focus our attention on what we think are the important aspects of care we are looking for guidance with at this point in our journey, and to consider how many

people are actually involved in her care.

Our appointment was at 9am, and as it takes us almost 3 hours to travel to Liverpool so we decided to stay in a nearby hotel overnight to make the morning less hectic for our daughter. (The Travelodge Stoneycroft is a 15 minute walk for anyone who is interested!)

Arriving at the hospital, we checked in on the machines which informed us of the location of the clinic (G3) and at 9am we were called into a room with Mr Fattah, three specialists appropriate to our daughter (psychologist, speech and language therapist, geneticist) and the wonderful Maria (specialist nurse). Maria played with our daughter, and engaged her in conversation so the other specialists could observe covertly. During their play, we were able to discuss concerns and suggestions for future interventions.

The appointment was one hour long, and I came out of it knowing that our daughter is being cared for by a wonderful team – who communicate with each other about her needs. This is what we’ve been missing in our local teams.

The new play area in the park right next door to Alder Hey is an absolute delight too – wheelchair friendly, and so many fun sections to run off any anxiety they might have held onto before or during the appointment.