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CF Centre Specialist Nurse Team

We are usually your first point of contact at the All Wales Adult Cystic Fibrosis Centre. There are six clinical nurses specialists (CNS), who have either worked on wards caring for patients with CF or as specialist nurses for a number of years, and who have previous experience from a variety of nursing backgrounds. We work as part of the multidisciplinary team. You may see a different nurse each time you come to clinic. Although we are inter-changeable, we each have other specific nursing roles.

Alison Prosser

Alison Prosser, Lead CF Clinical Nurse Specialist

Alison can be contacted by telephone on 02920 716488, or via the switchboard on bleep number 4868. Alison has set up the home care support service and a satellite portacath clinic in a regional hospital. She also co-ordinates the transplantation clinics.

Jonathan Lee

Jonathan Lee, Clinical Nurse Practitioner

He can be contacted by telephone on 02920 715465, or via the switchboard on bleep 4536. Jonathan co-ordinates the joint CF – diabetes clinic and also organises annual review appointments and clinics.

Lynne Hopkins

Lynne Hopkins, Clinical Nurse Specialist & Research Nurse

Lynne works two days as a CF clinical nurse specialist and another two days as a CF research nurse. Lynne can be contacted by telephone on 02920 715944, or via the switchboard on bleep 4466.

Sam Evans

Samantha Evans, Clinical Nurse Specialist

Sam is a fulltime clinical nurse specialist. Sam can be contacted by telephone on 02920 715652 or via switchboard on bleep 4467.
Sam also co-ordinates the CF liver clinics.

 

Lana Murrell, CF Specialist Nurse

Lana has recently joined the team and works part time as a CF specialist nurse, but previously worked in London on a ward where patients with CF were nursed. Lana can be contacted by telephone on 02920 715944 or via switchboard on bleep 4466

Annette Smith

Annette Smith, CF Specialist Nurse

Annette is another member of the team who recently joined us. Previously, Annette worked on one of our outlying wards at Llandough where some CF patients are cared for. Annette can be contacted by telephone on 02920 715946

What do we do?

The specialist nursing team provide advocacy and psychosocial support when needed, especially at important times such as transition, discussions concerning reproductive issues, during pregnancy, and pre-transplant referral.

The specialist nurses also provide home care support particularly for home intravenous (IV) antibiotic therapy. We run an individual competency based home IV teaching program for patients and initiate home IV’s, providing written information, as well as pumps and disposable supplies for use during treatment. We also access port-a-caths and pasports, insert long-lines, take blood to monitor drug levels and review patients throughout the course of their treatment. Patients are usually required to return to Llandough for venepuncture (taking blood), however where possible we aim to visit patients at home to do this. We will also contact patients if we need to adjust the dosage of medication following venepuncture.

We co-ordinate and manage annual reviews ensuring patients are seen by all members of the multidisciplinary team. We also arrange tests and investigations that are due around this time.

The specialist nurses also provide advice, training, education and support to patients and members of hospital staff and other professionals involved in CF care. We have attended European and National meetings to keep updated on recent research and developments within cystic fibrosis and often liaise with specialist nurses from other centres cross the UK.

At this CF centre, we are currently trialling clinics using virtual technology. This involves a secure connection over the internet, where patient’s can be reviewed at home or in the workplace remotely and although this does not replace the need to come for clinic review, it will enhance care and possibly reduce the number of times you may need to come to the centre. For some this will mean less time commuting to the centre and will fit in with busy lifestyles, working and further education. It is hoped that we will expand this service in the future to more patients. Virtual technology will also be used to communicate with specialists in other hospitals.

Patient safety and well-being is our prime concern and we adhere to very strict infection control policies. The specialist nurses help co-ordinate the various clinics with regard to different infections, and consultant availability. We are always available during working hours for any concerns that may arise.

We also act as a link between the patient and their family and primary care/community services and hospital. We liaise with the other members of the team and make referrals to them on your behalf.

All of our phones are linked to a voicemail system so if you call but are unable to speak to one of us, please leave a voice message. Messages are picked up regularly throughout the day, and we will get back to you.

If you have a general enquiry that does not need an immediate response the specialist nurses can be contacted via email. We aim to respond promptly and will try to ensure that you receive a response within 48 hours. Enquiries sent over the weekend will not be seen until the following Monday at the earliest. However this is NOT an emergency helpline and will not be available out of hours, at weekends or Bank Holidays. It is important that you are aware that the CF specialist nurses are unable to provide urgent advice via email - if you are unwell or need urgent out of hours treatment please contact your GP or the CF ward.