Cystic fibrosis home care service

Cystic fibrosis (CF) requires time consuming and often complicated treatment regimens that have to be carried out on a daily basis. 

The CF team at Great Ormond Street Hospital (GOSH) acknowledges the demands this makes on children with CF, their parents and family life in general. For those who require additional support, we also provide a home visiting service giving individualised care by a CF specialist nurse and CF specialist physiotherapist.

What we hope to achieve

  • „„Provide support, guidance and education for patients and families regarding diagnosis, physiotherapy treatments, nutrition (diet and enzymes), medications, new treatments, home IV antibiotic therapy.
  • „„Support transition to adult services.
  • „„Decrease the length of hospital stays allowing the patient and family to return to a normal routine and lifestyle.
  • „„Decrease the need for subsequent admissions or clinic visits.
  • „„Provide education for local health care professionals and schools.
  • „„Support during palliative care. 

What we can do at home

  • Assess techniques and effectiveness of treatments being carried out.
  • „„Assess clinical progress during a home IV antibiotic course.
  • „„Perform lung function tests, drug level monitoring, blood sampling, implantable port flushes, weight and dietary monitoring and gastrostomy advice.
  • „„Assess airway clearance physiotherapy treatments, monitor exercise regimens and provide general musculoskeletal advice where required.
  • „„Liaise with local hospitals, community children’s nurses and schools. 

Where you will be seen

  • „„ at home
  • „„ at school or nursery 

When will you be seen

  • „„Monday to Thursday from 8am to 6pm for nurse visits.
  • „„Monday to Friday from 9am to 5pm for physiotherapy visits.

How long we will see you for

The length and number of visits required will depend on:

  • The individual and the clinical circumstances.
  • The amount of support you already have available from other community agencies.
Ref: 2011F0574 January 2012

Compiled by the CF team in collaboration with the Child and Family Information Group