Article Text

G31(P) 22Q: What matters to you? improving care for children with 22Q11.2 deletion syndrome
  1. A Roueche1,
  2. E Menson2,
  3. A Callaghan2
  1. 1General Paediatrics, Evelina London Childrens Hospital, London, UK
  2. 2Paediatric Immunology and Infectious Diseases, Evelina London Childrens Hospital, London, UK


Aims Evelina London is the second largest children’s hospital in London. Around 300 children with 22q11.2 deletion syndrome are seen at the hospital within a range of teams. The immunology and general paediatrics teams have come together to improve care for these patients and their families.

Methods To achieve our aim we have undertaken a series of steps:

  • Development of a database of 22q11.2 patients with contribution from genetics, cleft, cardiology, respiratory and immunology teams.

  • Structured interviews with families to record patient narratives and to hear what is important to them

  • A questionnaire for families to establish their care needs

  • Development of a virtual multidisciplinary team meeting (MDT)

  • Collaboration across specialities and a planned ‘One-stop’ clinic for patients seeing multiple teams

  • Working with families to co-develop resources including a parent held health record and information for schools


Patients and families have been involved from the start through developing resources and giving their feedback and suggestions for improvement. We have also involved national patient support groups for this condition to expand our impact.

Results The main improvement so far has been the development of the patient database which has enabled us to quantify the patients attending our services.

We have successfully run 4 joint 22q and general paeds clinics. We have had overwhelming support for the project from all families involved.

10 clinical teams have agreed to support this project.

We now have a parent-held record and a personal education plan being piloted with families and being adjusted based on family feedback.

These steps have already shown an improvement, reflected by reducing DNA rates and improved patient experience.

Conclusions Change on this scale is hard. The teams involved each have their own priorities and constraints and so finding time for an MDT has been a huge challenge. Our solution has been to start small – initially bringing three specialties together for a virtual MDT and clinic. Patient and staff feedback will enable us to gradually incorporate more specialties. We are also approaching commissioners to see if a Commissioning for Quality and Innovation (CQUIN) payment could be created to promote multidisciplinary working.

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