ITP Nurses' Forum
'For thousands of people in the UK suffering from long-term conditions, one type of health care professional provides a level of care and support that they couldn’t do without – specialist nurses.' (Royal College of Nursing leaflet, Specialist nurses Changing lives, Saving Money)
ITP Clinical Nurse Specialists (CNS)
An ITP Clinical Nurse Specialist (CNS) has specialist skills, knowledge and experience in caring for patients with ITP. They are key members of a multi-disciplinary team involved in the management of adults or children with ITP. Only a limited number of hospitals have an ITP Clinical Nurse Specialist. The role of the ITP CNS is to offer patient support and to provide continuity of patient care, such as:-
Helping the patient and their family understand the management plan of their ITP.
Explaining treatment dosage and any possible side effects.
Assisting the patient or parents of children with ITP to make decisions about their care
Answering any questions from the patient or family members.
Listening to any patient concerns or problems.
Passing on details of the ITP Support Association and ITP phone app.
A Nurses' Education Day organised by Novartis is being planned for May 2019 in London.
ITP Nurse Education Day
In October 2018 the first meeting of the ITP Nurses' Forum was arranged by CNS Siobhan McGuckin of University College London Hospital who reported on the event as follows:
We held our inaugural ITP Nurse Education Day on Tuesday 30th October in The Royal College of GPs, Euston, London. We had a mixture of Adult, Paediatric and Clinical Trials Nurses in attendance alongside representation from The ITP Support Association.
The day proved to be extremely educational for everyone and it was also a fabulous opportunity for all of us who are involved in caring for ITP patients to meet and share experiences. All presentations were very well received and generated lots of questions. My huge thanks to all of the speakers: Dr Drew Provan, Dr Nichola Cooper, Camelia Vladescu and Will Watson for their participation in the Education Day. Our patient representative, Xenia Norman, gave an excellent account of her ITP journey. This was much appreciated by all of the audience, and it was really interesting for ITP nurses to hear the patient perspective of living with ITP. It is hoped that we can continue to drive the Nurse Education programme forward and to attract more ITP nurses to future meetings.
My personal thanks go to Shirley Watson from the ITP Support Association for all her help with the Education Day and to Professor Marie Scully from UCLH for her support and for financing the Education Day, enabling it to be held in The Royal College of GPs.
Siobhan Mc Guckin
Clinical Nurse Specialist