Clinical Care Patient Adviser
I'm Dominic Kavanagh and I work as the Clinical Care Patient Adviser (CCPA) throughout the West Midlands and East Midlands for the Cystic Fibrosis Trust. I work as part of a team of 7 Clinical Care Patient Advisers, who cover the whole of the U.K. I live near Shrewsbury.
You might have already read by now about my role on my page on the West Midlands Adult CF Centre's dedicated website, but I want to explain to you a bit about my role as a Patient Adviser. Recently, in the patient satisfaction survey I conducted on behalf of the CF Trust, on the care you receive at your CF Specialist Centre, just over half of you who responded to the survey indicated that they were not aware that there was an Clinical Care Patient Adviser. Also, nearly 40% of those of you who responded to the survey were not sure whether the CCPA role is an important one. The conclusion I drew from this was that I had to explain the role clearly.
I have been in the CCPA role since May 2008. My main task is to work with the Cystic Fibrosis Trust to secure improved clinical care for people like you and me with CF. I work closely with the CF teams like at Heartlands, to help ensure safe and appropriate care in all aspects of the service. Obviously, because you and I cannot meet to discuss aspects of care at our Specialist Centre, due to the risk of cross infection, I have to rely on telephone calls, emails and patient surveys which provide me with your view of the service and what you think is good or could be improved in the care and facilities you experience. The feedback I receive is shared with the CF team, anonymously, allowing them the opportunity to put things right or for me to highlight issues which would benefit from improved funding. Therefore, I also contact the Commissioner for Specialised Services in the West Midlands and attend meetings to raise issues around funding of CF services in the West Midlands region, including the service at Heartlands of course. As Clinical Care Patient Advisers we have to have a good understanding of what good CF care is all about, including aspects of CF care which we haven't experienced ourselves.
As a Patient Adviser, I also attend meetings at a regional and national level to represent the CF Trust and the CF community, drawing on my own experience of living with CF, but also by learning from your experiences of living with CF and taking these into consideration when trying to discuss with, persuade and influence people involved in developing specialised services like CF.
I also contribute to discussion about the developments to our Specialist Centre's dedicated website here at Heartlands. When involved in such things, I do always try to think beyond my own preferences and experiences, trying to imagine what you would also like to see in this website facility.
If at any time you have suggestions for the CF service at Heartlands, as I'm sure you do, do let me know. Often, a suggestion that one person has is shared by others who haven't come forward and equally, it's always useful for me and also no doubt for the CF team to know what you think the team do well or have improved on.
Keep well in the coming months and I look forward to hearing from you.