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York Adult Cystic Fibrosis Unit

Physiotherapy for people with Cystic Fibrosis in York

What's new?

We now have a musculoskeletal and continence service up and running. We know that some peope with CF experience problems with posture, muscle and joint pain and problems with leaking urine especially when coughing. We now have access to two physios, Heather Harrison and Ceri Willis, who are specialist in these types of problems and who have completed extra CF training. At clinic, I will be asking you if you would like to see them for an assessment and advice or treatment. We will aim for this to be offered at least once a year to prevent problems and more often if you tell me ablout problems that arise. For more information about this service and about Heather and Ceri please see physiotherapy page 2.

Who am I?

Hi I'm Tracey your specialist physio. I thought I'd use this webpage to give you some useful information about physio for people with CF (see the downloads and links on the right side of this page) and to let you know who I am and what the CF team hope to do with your physio service.

I qualified as a physio in 1999 and, while doing my junior physio job, worked for a few months at the adult CF centre at Wythenshawe. I decided that this was something I wanted to do in the longer term and so got a job at the Royal Brompton hospital in London where I spent a few years rotating around different respiratory areas including lots of work with children and adults with CF. I then moved to a senior physio job at the Leeds adult CF unit for seven years. During my time at Leeds I completed a masters degree in the management of long term health conditions and did some research about how well people manage to take nebulised treatment. I also started lecturing at Leeds Metropolitan university; teaching physios in training about oxygen, nebulisers, etc.

I moved to York in October 2010 to lead the adult CF physio service here. I am chair of the ACPCF which is a group of physios who all work in CF. I lecture at different meetings about CF physio and about the research I have published. I have also been involved in creating guidelines about physio for people with CF. I have been back at university and have completed a course in non-medical prescribing; this means that I can prescribe some of the treatment which you are on or starting. The CF team hope that, by more of us being able to prescribe your treatment, you will have fewer delays in starting or getting treatment and that you will have more members of the team to go to for medication advice.

What does this mean for your CF service?

I'm keen to make changes to the service to achieve two things:

  • To give you a physio service that suits you and gives you what you need

  • To make sure that the physio service meets all the standards set down by the Cystic Fibrosis Trust and other organisations who produce guidance (see the download bar on the right to read these standards)

In order to do this I need you to get involved. Tell me what you want, what works well, what doesn't, what's missing, etc. I have a very thick skin and will not get upset or irritated with you if something I do, or any of the physios you come across do, doesn't work for you. If you don't tell me then I can't make the service right for you. You can contact me or any of the Cystic Fibrosis team or catch me for a chat at clinic.

What does the CF physio service offer?

I work with the rest of the CF team to help you with different areas of your care. These include:

  • Keeping your chest clear (airway clearance)

  • Exercise

  • Medication, particularly your inhaled treatments

  • Treatments such as oxygen and non-invasive ventilation

  • Helping to prevent or to treat continence problems (leaking urine)

  • Helping to prevent or to treat musculoskeletal problems (poor posture, joint problems, injuries, etc)

  • Helping you to manage your treatment around other things in your life

  • Being there as someone to talk to

To do this I see you at every visit you make to the CF unit:

I also invite you for a longer review once a year as part of your annual assessment. This gives you and I time to 'fine tune' your treatment and to do additional tests such as an exercise test.

If I am not available when you visit the CF unit, another member of the physio team will see you and I will contact you following this if needed. I am also available via e-mail, telephone, letter or you can arrange to see me at the hospital if you have any problems between your usual CF appointments.

Check out the downloadable leaflets about physiotherapy for people with Cystic Fibrosis and related topics on the right hand side of this page. I have also added YouTube clips about using your INeb nebuliser and using Colistin and hypertonic sodium chloride nebulisers with an EFlow.

Downloads

What to expect from the physio service at York

Physio at clinic appointments

Physio during an admission

Advice leaflets

Lung function

Active cycle of breathing technique

How to cope with being short of breath - positions

How to cope with being short of breath - breathing exercises

Energy conservation

Standards that we work to

CF Trust physiotherapy standards

British Thoracic Society physiotherapy standards

CF Trust standards of care

download (9)

Tracey Daniels, Specialist Physiotherapist for CF

Youtube clips showing use of the INeb nebuliser (top), Colistin (middle), hypertonic sodium chloride 7% (bottom)