Children's and young people Cystic Fibrosis

The Specialist Cystic Fibrosis (CF) Centre at the Nottingham Children's Hospital cares for around 180 children and young people a year in Derbyshire, Nottinghamshire and Lincolnshire.

We see children and young people at the QMC, and at other hospitals across the East Midlands through a system of shared care. Other hospitals include: 

  • Royal Derby Hospital
  • Chesterfield Royal Hospital
  • King’s Mill Hospital (Sutton-in-Ashfield, Notts)
  • Lincoln County Hospital
  • Pilgrim Hospital (Boston, Lincs)

Contact us

Monday-Friday (8.00am - 4.00pm)

For general enquiries contact the Medical Secretary

Tel: 0115 924 9924  Ext: 84041

For enquiries or advice about your child's health contact the CF nurses. If necessary, they can arrange a medical review the next working day.

Tel: 0115 924 9924 Ext: 82286

 

Evenings and weekends

Outside office hours, non-urgent messages can be left on the above phone numbers. They will normally be acted on the next working day.

For urgent advice at evenings and weekends, contact Ward D33. You may be directed to the Children’s Emergency Department.

Tel: 0115 924 9924 Ext: 89033

Clinics and inpatient admissions

CF Clinics in Nottingham

Patients usually attend clinics every 8 weeks, or more often when newly diagosed or unwell. The clinics are:

  • on Tuesday or Wednesday afternoons.
  • at Children's Clinic South, B Floor, South Block, Queen's Medical Centre.

Children and young people will be seen by a Doctor and other CF Specialists including a Nurse, Physiotherapist, Dietician, Social Worker and Psychologist. We may suggest parents of teenagers leave the clinic room for some of the appointment to help young people develop independence. 

 

Inpatient admissions

Admissions are arranged in advance where possible and are usually on Ward D33, D floor, East Block, QMC.

When patients with CF are admitted for treatment, they will typically stay in the hospital for two weeks, and sometimes longer. You will have your own en-suite side room. We appreciate this can be lonely and boring for children, young people and their families. To keep children occupied:

  • the play specialist can bring things to do and spend time with children and young people
  • during the school term, the hospital school teacher is there to provide school work and educational activities
  • the Hospital Youth Service provides support and activities for young people from 11 to 24 years including its own Youth Room

 

Transition to adult services

We want all young people with CF to become confident adults in the best possible health. The child and adult CF services work closely together to help young people make the transition to the adult service, usually between their 16th and 18th birthday. 

In the year or two leading up to transition, young people have some of their routine appointments at special 'transition clinics' at the adult centre, where they are seen by members of both the adult and children's team. This enables young people, their parents and the adult team to meet, ask questions and learn about each other - well before their care is transfered to the adult service.

Frequently asked questions

Cough swabs - What happens next?

  • Cough swab results are checked on the Monday following your clinic appointment.

  • If your child requires treatment we will contact you. Appropriate treatment will be prescribed and a repeat cough swab will be arranged at the end of the treatment.

  • If you have no contact from the CF team, you should assume that no treatment is required.

 

Prescriptions at clinics - How do I get a repeat prescription sorted?

  • When you arrive in clinic, as soon as possible ask a nurse or doctor to arrange for the prescription to be written.

  • A member of staff may be able to take the prescription to pharmacy, saving you time when you leave.