UKCFC 2019: day two

UKCFC is the largest annual UK conference dedicated to care and research in cystic fibrosis.

Friday 27 September 2019

Day two is designed for families and the wider CF community with either a personal or professional interest in cystic fibrosis.

Register for day two

9:00 Conference registration

9:30 Welcome to day two

Dr Keith Brownlee, Director of Policy, Programmes and Support, Cystic Fibrosis Trust

09:45 Session one: UKCFC day one recap

Cystic Fibrosis Trust research team

Members of the Trust’s research team will reflect on day one of UKCFC, providing updates on: development of new therapies for cystic fibrosis, innovative ways to reduce the burden of care, Trust-funded research and personalized medicine of the future.

    10:15 Session two: The challenges and opportunities of getting older with CF

    A virtual conversation between two people with CF about their lived experience of and concerns about getting older with cystic fibrosis and all the challenges, concerns and happiness it brings.

    11:00 Coffee & networking

    11:15 Session three: The changing face of CF treatment and its impact on emotional wellbeing

    Discussing the psychological impact of the potential for transformation treatments to change the future of cystic fibrosis.

    Michèle Puckey, Paediatric Clinical Psychologist, Royal Brompton Hospital

    12:00 Session four: Packing a punch, the importance of impact

    Cystic Fibrosis Trust 

    Highlighting the collaborative relationship between supporters and the Cystic Fibrosis Trust and showing the impact their dedication has on the Trust’s ability to do the work it does. 

    12:45 Conference close

    Richard Hunt, Chairman

    13:00 Conference lunch

    14:00 Afternoon workshops (60-90mins)

    A) Positive parenting and Resilience: ‘A workshop focusing on practical skills for parenting children with cystic fibrosis and dealing with unresolved issues in adulthood’

    This workshop is presented by 2 clinical psychologists with many years’ experience of working with children, adolescents and adults with CF. The potential challenges in parenting children with CF will be explored and positive parenting strategies will be suggested for issues including:

    • Coping with the diagnosis of CF
    • Managing CF treatments, hospital attendance and medical procedures
    • Talking to children about their CF
    • Parenting adolescents

    Emotional challenges, coping and resilience in adulthood with CF will also be explored and further suggestions for providing ongoing support as a parent of an adult with CF will be made.

    Audience members will have the opportunity to discuss the topics presented in small groups and to share views/tips on parenting people with CF (if they want to!)

    Dr Mandy Bryon, Consultant Clinical Psychologist and Head of Psychological Services, Great Ormond Street Hospital & Helen Oxley, Consultant Clinical Psychologist, Manchester Adult Cystic Fibrosis Centre. Facilitated by Michèle Puckey, Royal Brompton Hospital and Dr Samantha Phillips, Bristol Children’s Hospital

    B) Polypharmacy within cystic fibrosis and moving towards deprescribing

    Polypharmacy is a well-documented problem within cystic fibrosis and people with cystic fibrosis have a very high burden of care. This was highlighted when ways to effectively reduce this burden was ranked as the number one research priority in cystic fibrosis by the James Lind Alliance. We will discuss this topic from the view of the pharmacist, who can play a key role in helping reduce this burden of care as medication makes up a large proportion of the treatment of cystic fibrosis.

    Elaine Bowman Specialist pharmacist - respiratory medicine, Royal Brompton and Harefield NHS Trust & Michael Dooney, CF pharmacist, Blackpool Adult CF Service and Manchester Adult CF Centre

    An update on the use of CFTR modulators following their introduction in 2013 to the present and an outline of the potential breakthroughs and challenges ahead. 

    15:30 Close

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