Cystic Fibrosis

What do we do?

The Royal Manchester Children's Hospital (RMCH) provides one of the North West Regional Centres for Cystic Fibrosis (CF). In addition we have shared care links with District General Hospitals in Greater Manchester, Lancashire & South Cumbria. Care, advice and support are offered to children, adolescents and families from diagnosis through to the time of transfer to adult services at 18 years of age.

In-patient admissions

Children and young people with Cystic Fibrosis who need to come into hospital for a planned admission will stay on one of our speciality wards. Ward 85 is a specialised respiratory ward which has a number of cubicles with en-suite facilities.

Admissions for routine intravenous antibiotics are arranged by the CF Staff Nurses. On the morning of admission, parents are required to ring Ward 85 to check bed availability. On arrival to the ward, a nurse will orientate you to the ward and hospital and discuss the admission. You are required to bring in your own medication and equipment from home and this will be locked away safely on the ward. All medications will be administered by nursing staff during admissions.

You will be nursed in a cubicle and all of their care and treatment; eg, physiotherapy, schooling and play are performed in the cubicles so that strict isolation policies are adhered to. Children and young people with CF may have supervised exercise session's time tabled into their day. We may allow you out during the day to attend school, however, this should be discussed with the CF multidisciplinary team before arrangements are finalised as you will be assessed by all members of the team during day-time hours.

Support Services 

Cystic Fibrosis requires time consuming and often complicated treatment regimes that have to be carried out on a daily basis. The cystic fibrosis team at RMCH acknowledge the impact this burden of care can have on you and your families. Our CF nurses can offer home visits to provide extra support to families when required and will refer on to clinical psychology or play services if psychological input is required. It is also possible for patients to have home Intravenous Antibiotic Therapy which involves parents or carers having training to become competent in reconstituting and administering intravenous antibiotics and completing a teaching assessment package.

Transition

Transfer of young people with Cystic Fibrosis should take place sometime between your 16th and 18th birthday to the adult CF centre at University Hospital of South Manchester (Wythenshawe Hospital). Your CF nurse specialist will discuss with you the ideal time for your transfer. You will be adequately prepared for transfer and given opportunities to meet with the adult CF Nurse Specialist during a home visit and the rest of the adult CF Team should you choose to visit the adult centre.  A written information package and DVD about the adult centre and transition will also be provided.

A project aimed to help RMCH Cystic Fibrosis patients transfer to the Manchester Adult CF Centre at Wythenshawe has recently been launched. Transitions is a creative project by and for young people aged 15 to 18 with cystic fibrosis (CF) which aims to help them make the transition from paediatric to adult healthcare services. Lime Art commissioned three artists to work with young people with CF to design a Transitions Pack which includes an information booklet, leaflets and a DVD. The DVD is divided into chapters and includes a short drama fictionalising accounts drawn from young people with CF, animation sequences, a virtual tour of the Manchester Adult CF Centre and interviews with older CF patients about their experiences.

What to do if you become unwell?

Children and young people with CF have open access to RMCH. If a you need a review or advice, the first point of contact is via the CF Nurse Specialists during office hours. They can then make the necessary arrangements to have you reviewed by the respiratory doctors in A&E at a specified time. Outside working hours, you should ring Ward 85 for advice or come to A&E specifying that they have CF and are under the care of RMCH. It is advisable to ring ahead to inform them you are coming so that the medical notes can be ordered.  

A project aimed to help RMCH Cystic Fibrosis patients transfer to the Manchester Adult CF Centre at Wythenshawe has recently been launched. Transitions is a creative project by and for young people aged 15 to 18 with cystic fibrosis (CF) which aims to help them make the transition from paediatric to adult healthcare services. Lime Art commissioned three artists to work with young people with CF to design a Transitions Pack which includes an information booklet, leaflets and a DVD. The DVD is divided into chapters and includes a short drama fictionalising accounts drawn from young people with CF, animation sequences, a virtual tour of the Manchester Adult CF Centre and interviews with older CF patients about their experiences. 

Useful contact details:

CF Nurses - 0161 701 0660
Professor David and Dr Panikar's secretary - 0161 701 5093
DrThomas and Dr Chan's secretary - 0161 701 5184
Physiotherapy & Dietetics - 0161 701 5177
Medicine information - 0161 276 6270
Request for sputum pots or cough swabs - 0161 701 1269
Ward 85 - 0161 701 8500
PALS - 0160 701 8700

 

Consultants
Prof Tim David
Dr Jay Panicker
Dr Elaine Chan
Dr Clare Murray
Dr Fran Child

Cystic Fibrosis Specialist Practitioners
Janet Edgar
Janice Fauset-Jones
Joanna O'Toole
Anne Thompson

Cystic Fibrosis Staff Nurses
Ann Myrtle
Sophie Core

Dietitians
Moira Dixon
Sarah LeGrice
Anisa Aslam

Phsyiotherapists 
Catherine Thornton
Nicola Brogan
Omar Lamptey

Pharmacist
Lynn Brown

Pyschologist
Claire Brown

Sites for young people: