Information for people living with CF

Who are we?

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We are a nursing team consisting of 5 nurses, 2 based at York and 3 based at Hull, although we work across both sites. Julie Ackerley and Rebecca Howells are both based at York, Tanya Cavany, Mel Robinson and Debbie Ingram are all based at Hull.

What we do

Appointments

We are responsible for:

arranging your clinic appointments, usually every 3 months, which we do according to microbiology.

all of the CF in-patient admissions following an MDT decision

arranging your annual assessment for which we organise blood tests, a chest x-ray, diabetes screening, abdominal ultrasound, bone scan, lung function and overnight oximetry. Not all of these will need to be done every year.

arranging and supporting your day to day treatments as well as any acute treatments you may require which include oral and intravenous antibiotics.  All homecare services for treatments are also supported by the Nursing Teams.

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We are also experts in the care and management of port-a-caths.

We provide a holistic nursing care service for all of our patients, their families and carers and work within a wider multidisciplinary team to ensure that all of our patients’ care needs are met.

 

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Policies, Guidelines and Standards of care:

CF trust standards of care, 2011

CF trust standards of care for nursing management, 2001

NICE guidelines 2017

NMC Code of conduct

Local Standard Operating Procedures

Local Policies

Right now across the UK, there are around 6,500 people in need of an organ transplant, including around 150 children and teenagers. On average three people die every day in need of an organ transplant because there just aren’t enough organ donors.

Register here

Fundraising

We are always amazed and extremely grateful when people go out of their way to raise money for cystic fibrosis services. Some people are motivated by a family member or friend living with CF, and some people have heard about the disease in the press and offer to help.

Find Out More