What we do
The North of England Children’s Primary Ciliary Dyskinesia (PCD) Management Service based at Leeds Children’s Hospital cares for approximately 60 children and young people (CYP) on a full-care basis. We also provide annual reviews and support for approximately 140 CYP with PCD across the North of England. Our service is one of the largest in the UK.
Our overall aim is to support and empower children and young people with PCD in maintaining the best possible health and to take part in everything they want to do, including their aspirations and goals for their future. This includes support with exercise, medication, lifestyle and diet.
We strive to support children and families in their on-going understanding of their condition and can provide support and education both within the home and school setting.
We provide an excellent and comprehensive service based on high standards of care supported by national guidelines.
Working together
We are one of four management services in England and enjoy working together with the other centres for access to optimal care for all, wherever children and young people live. We work closely and meet regularly with the adult North of England management team, also based in Leeds, which is great for streamlined transition up to adult care.
We work closely with tertiary respiratory centres and children’s services within the North of England for multi-disciplinary team (MDT) annual assessment clinics, including: Alder Hey Children’s Hospital, Bradford Teaching Hospital, Great North Children’s Hospital in Newcastle, Hull Royal Infirmary, James Cook University Hospital, Royal Manchester Children’s hospital, Sheffield Children’s hospital.
We are part of the National PCD registry, European Reference Network (ERN-Lung) and the PCD European clinical trials network. Working together, especially for rare conditions, continues to support excellent care, with robust and up to date evidence.
As a tertiary referral centre and as part of Leeds Teaching Hospitals, we are proud to be actively involved in service development and are committed to enabling all children and young people to have access to take part in research.
Meet the team
Our specialist multi-disciplinary team includes Consultants, Specialist Physiotherapists, Specialist Nurses and a Specialist Psychologist.
Consultant and Lead Clinician: Dr Evie Robson
Consultant: Dr Eduardo Moya
Consultant: Dr Alex Adams
Specialist PCD ENT Consultant: Miss Tosief Zahoor and Mr Paul Nix
PCD Administrator: Marie Stoves
Specialist PCD Physiotherapists:
Lynne Schofield
Tiffany Small
PCD Nurse Specialist: Jemma Jones
Specialist PCD Psychologist: Dr Alistair Duff
Outpatient Sister: Carol Sowerby
Clinic Nurse: Katy Waller
Clinic Assistant: Lesley Kell
Physiologist Lead: Hayley Dodsworth
Our facilities
Children and young people attending our Leeds PCD clinic
When attending clinic please bring to every appointment your child’s current inhalers, spacers, and any nebulisers and physio devices they may have, so we can check they are working well.
Each child or young person with PCD, accompanied by their parent or carer, will be seen in individual rooms to protect against cross-infection.
At each clinic appointment children will have their height and weight measured. They will have their oxygen saturations recorded on an oxygen saturation monitor. Children over five years of age will have their lung function measured, usually with a spirometry machine. A cough swab or sputum sample will be obtained to check for the presence of any respiratory infection. If required your child may need to have further tests such as a chest X-ray or blood tests, these will be fully explained to you and your child.
Children and young people will be seen by a Doctor, a Specialist Physiotherapist and a Nurse Specialist on each visit to clinic.
Once a year, all children and young people will have an annual review, where they will also have access to a review with a PCD Psychologist, an ENT Specialist, a hearing assessment and a Dietitian review where necessary.
Children and young people who may require an inpatient stay at our hospital
Our main inpatient ward is L38, situated on B floor, Clarendon wing. Children and young people may, at times require an admission for assessment and management including antibiotics and physiotherapy. They will have a side room.
Where possible, children and young people can also access care which includes intravenous antibiotics at home.
Contact us
For the North of England Management Service please contact Marie Stoves.
Tel: 0113 3926335
Email: [email protected]
Useful links
These links are resources are curated by our clinical team. We hope you will find them useful.