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Adult cystic fibrosis service

What the service does
Who provides the service
How to access the service
Other contact details
Location of service
Useful links


What the service does

The adult cystic fibrosis (CF) service monitors and treats people aged 17 and older who have cystic fibrosis. We are a regional service so we work with people from all over Northern Ireland.

We also work closely with our colleagues in the paediatric cystic fibrosis team and consultants in other specialist areas including:

  • diabetes
  • gastrointestinal disorders
  • hepatology (liver problems)

We have links with the Regional Fertility Centre, Queen’s University Belfast Clinical Research Unit, and transplant teams across the UK and Ireland.

Who provides the service

Our team includes:

  • specialist consultants and doctors
  • dieticians
  • microbiologists
  • nurses
  • pharmacists
  • psychologists
  • physiotherapists
  • admin staff
  • social workers

The sections below have more detailed information on the teams that make up the adult cystic fibrosis service.


  • Clinical psychology team
    What the team does

    Clinical psychologists often see people with cystic fibrosis to help them cope with the demands of their condition. We also use psychological therapies to help cystic fibrosis patients cope with other life stresses.

    We help you change the way you feel, think or act. The problems we help tackle include:

    • anxiety, panic attacks or stress
    • coping with illness and treatment
    • phobias, for example a fear of needles or a fear of lifts
    • feeling depressed or low mood
    • sleep problems
    • managing pain
    • family or relationship problems
    • grief and loss
    • the effect of traumas
    • problems with anger
    • eating difficulties
    How to access the service

    You may see one of the clinical psychologists as part of your annual review.

    Throughout the year, you can be referred for an assessment with a clinical psychologist by anyone in the cystic fibrosis team.

    Alternatively, you can phone the clinical psychology department directly on the number below and ask for an appointment.
    Telephone: (028) 9504 7413 (Monday to Friday, 9.30am to 5.30pm)
    Please ring if you would like to discuss anything with a psychologist or would like any more information.

    Confidentiality

    Appointments with a clinical psychologist are private and all information is treated as confidential. This information will only be discussed with other members of the cystic fibrosis team or your GP if you agree to this, or if it is considered essential for your treatment or safety.

  • Dietetic team
    What the team does

    Registered dietitians assess, diagnose and treat diet and nutrition problems. To do this, they use up-to-date research on food, health and disease.

    Nutrition plays a significant role in the health of people with cystic fibrosis (CF). Better lung function is associated with good nutrition and healthy body weight.

    We work in both inpatient and outpatient settings as part of the overall cystic fibrosis team. We provide and discuss treatment plans to help achieve a healthy body weight and maximise lung function.

    We also work closely with the diabetes team in the screening, diagnosis and management of cystic fibrosis diabetes.

    The dietetics team can advise on all aspects of nutrition including:

    • pancreatic enzyme replacement therapy
    • supplementary nutritional support – oral nutritional supplements and enteral tube feeding
    • diabetes screening and management
    • gastrointestinal problems
    • fat soluble vitamins
    • bone health
    • healthy eating
    Useful links

    Cystic Fibrosis Trust
    Association of UK Dietitians

  • Microbiology team
    What the team does

    The microbiology team processes the sputum of cystic fibrosis patients to look for infections.

    The process of sputum testing involves several stages:

    Collection of sputum

    Your physiotherapist will help you give a specimen of sputum. In the microbiology lab, we need the best possible specimen. A quality specimen helps us find the microbes that infect the lungs deep down in the lower respiratory tract.

    Laboratory testing

    We mix your sputum specimen with chemicals so that all the microbes in it are released. That way, we can detect them more easily. There are four types of lab test:

    • virology (viruses)
    • bacteriology (bacteria)
    • mycology (fungi)
    • parasitology (parasites)
    Testing for the right antibiotic

    When we have detected a bug in your sputum, we need to decide which antibiotic is most suitable to treat it.

    DNA testing

    Sometimes we may need to do further tests using DNA from the bug. This may provide further information to help treat the infection.

    Report

    When all the microbiology lab tests have been completed and checked, we produce a report for the cystic fibrosis doctors and nurses.

  • Pharmacy team
    What the team does

    The adult cystic fibrosis pharmacy team consists of a pharmacy technician and clinical pharmacists.

    We work with patients, families and carers to provide advice on all aspects of medication such as tablets, nebulisers and inhalers.

    We also work closely with all members of the multidisciplinary cystic fibrosis team to ensure we provide patient focused pharmaceutical care.

    We are responsible for the following:

    • carrying out a review of all your medication at least once a year when you attend the cystic fibrosis outpatient clinic
    • providing information and advice about your medications, such as the reason for taking them, how and when to take them, and possible side effects
    • managing the supply of cystic fibrosis transmembrane conductance regulator (CFTR) modulators to patients
    • communicating with your GP practice and community pharmacy regarding new therapies and medication changes
    • carrying out a review of all medication prescribed for people with cystic fibrosis when admitted to hospital – this includes:
      • ensuring we have prescribed the correct medication for you when in hospital
      • advising the cystic fibrosis team on the choice and suitability of drug therapy
      • monitoring for side effects
      • therapeutic drug monitoring
    • providing information and advice to all staff involved in prescribing and administering drugs to cystic fibrosis patients
    • managing discharge medication and ensuring the seamless transition of patients into and out of hospital
    Contact details

    If you have any queries or need support managing your cystic fibrosis medications, please speak to us at the outpatient clinic or contact the cystic fibrosis helpline.

  • Physiotherapy team
    What the team does

    The physiotherapy team within the cystic fibrosis department is responsible for the following:

    • monitoring lung function at outpatient clinics and home spirometry
    • obtaining sputum samples and cough swabs
    • airway clearance techniques in hospital, outpatient settings and at home
    • oxygen assessment, prescription and management
    • exercise assessment, exercise guidelines and exercise training
    • referral to leisure centres, gyms and online exercise resources
    • new medication trials
    • prescription and management of medication
    • supply and maintenance of compressors and e-flows
    • supply of medication chambers
    • transition clinics from the paediatric to the adult cystic fibrosis service
    • educating patients and their relatives
    • educating other staff and students
    Contact details

    Text only: 075 9062 2778

  • Social work team
    What the team does

    The social work team develops person-centred, biopsychosocial working relationships with cystic fibrosis (CF) patients and their families.

    • We empower patients and promote their right to self-determine all aspects of their life.
    • We tailor an individual social assessment to the patient’s needs.
    • We consider all the patient’s care and support needs, and any risks that may be present in their life, including those related to child protection and adult safeguarding.

     

    Our social workers also seek to support carers. We offer carer assessments and make referrals for various therapeutic supports and carer grants.

    In addition, the social work team helps families and patients deal with education and employment opportunities. We offer support and advice on securing state benefits. This gives patients greater financial security and improves their quality of life.

    How to access the service

    Telephone: 028 9504 0407 (9am to 5pm, Monday to Friday)

    Advice Space

    People with cystic fibrosis can access specialist advice by contacting Advice Space.
    Telephone: 0300 123 3233 (between 10am and 12pm)
    Email: cf@advicespace.me

  • Specialist nursing team
    What the team does

    Our role is to ensure you receive the highest level of nursing care. This includes providing advice, support and education tailored to your needs. We can also give support to your family or carers.

    The cystic fibrosis specialist nursing service provides support to patients through:

    • the cystic fibrosis helpline ­
    • nurse-led clinics
    • inpatient care
    • outpatient clinics
    • support in the community, for example at your home, place of work or college

     

    We offer many services, including:

    • home intravenous antibiotics
    • monitoring and guidance for new cystic fibrosis transmembrane conductance regulator (CFTR) modulator drugs, for example Kaftrio, Ivacaftro, Orkambi and Symkevi
    • nebulised drug trials
    • screening for cystic fibrosis (CF) diabetes
    • home visits
    • porta-cath maintenance
    • general education around cystic fibrosis
    Cystic fibrosis diabetes

    Cystic fibrosis diabetes (CFD) is a distinct form of diabetes that is different to both type 1 and type 2. It often develops gradually and early symptoms can go unnoticed.

    Cystic fibrosis can cause scarring of the pancreas, which can affect that organ’s ability to produce insulin.

    Insulin resistance can also occur in people with cystic fibrosis. The impact of insulin resistance can be significantly increased by corticosteroids, which are used to treat cystic fibrosis symptoms.

    The risk of developing cystic fibrosis diabetes increases with age. It can affect up to half of all adults with cystic fibrosis. Early diagnosis is important. If left untreated, it can affect:

    • weight
    • lung function
    • frequency of acute exacerbations
    • admissions to hospital
    • sputum production

     

    Over time, cystic fibrosis diabetes can lead to other complications, which may affect your eyes, kidneys, feet and circulatory system.

    Specialist cystic fibrosis diabetes nurse

    Before the Covid pandemic in 2020, the cystic fibrosis specialist nursing team screened adults using the oral glucose tolerance test (OGTT) as part of your annual review.

    More recently, we have been using continuous glucose monitoring (CGM), where a small device automatically measures your glucose levels.

    If you have abnormal results, you will be referred to the Cystic Fibrosis Specialist Diabetes Clinic for further assessment. At the clinic, we will decide if insulin treatment is suitable. Insulin is currently the only treatment for cystic fibrosis diabetes.

    Contact details

    Please contact the cystic fibrosis helpline to speak to a member of the nursing team.


How to access the service

We have a cystic fibrosis helpline that is available from 8am to 4pm, Monday to Friday.
Telephone: (028) 9504 8197.
You can access any member of the cystic fibrosis team using this number.

After working hours, please phone the out-of-hours number to access the service.
Telephone: (028) 9504 0826 / 9504 0827

In an emergency, please attend your nearest Emergency Department.

Other contact details

Cystic fibrosis nursing: (028) 9504 8197 – 8.30am to 5pm
Clinical psychologist: (028) 9504 7412 – 9.30am to 7pm, Monday to Wednesday
Physiotherapist (text only): 075 9062 2778 – 8.30am to 4.30pm, Monday to Friday
Social worker: 077 4057 9139 – 8am to 4pm, Monday to Friday

Location of service

The adult cystic fibrosis outpatient service is located at Belfast City Hospital. Patients are reviewed in specialist cystic fibrosis clinics, according to their sputum microbiology.

Due to the Covid-19 pandemic, our inpatient facilities have been moved to level 7 of the Critical Care Building on the Royal Victoria Hospital site.

Useful links

Cystic Fibrosis Trust


Locations where this service is delivered