New patients/Transition

Introduction

Cystic fibrosis is no longer a condition that only affects children. Patients are living longer and there are now more adults than children living with cystic fibrosis. The CF Team tries to ensure that treatment fits in with the patient’s lifestyle to allow them to balance the demands of their treatments against work, relationships and social life.
 
Care of adults is more complex and requires a specialist multi-disciplinary team with experience of the long term nature of the condition. You may find that the adult and paediatric teams are very different in the way they work but do not worry they both have the same goal- for you to stay as healthy as possible.
 
There is a change of emphasis from parents to the young person making decisions about their care and treatment. The Adult team want to ensure that this relationship is more of a partnership to allow patients with cystic fibrosis to gain greater understanding and control over their disease. Therefore, children and adults are not only living longer but are also living a better quality of life.
 

What is transition?

Transition is the process of planning and preparing a move from Child to Adult Services. Over many months (January to September), specialist transition clinics are run jointly by the Paediatric CF Team and the Adult CF Team, firstly at the Royal Hospital for Sick Children and later at the Western General Hospital in Edinburgh.  Until your final move to the Adult CF Service in September, you will still be un¬der the care of the Paediatric CF Team and should contact them for review or in the case of any emergency.
 
Transition is a gradual process to allow time for you (and your family) to get ready to transfer to another service and to consider your healthcare and goals in adulthood.  Careful planning by both teams helps to put the young person at the centre of this process, taking into account the fact that you may also be managing transitions in other areas of your life (e.g. education, living arrangements, work etc.) at the same time too.
 

When does it occur?

As children get older they need to be involved in decisions about matters that affect them, so that by the time they are young adults they have learned to take responsibility for their own health. For this reason, the Paediatric CF Team will usually start talking to you about a move to Adult CF Services when you become a teenager (around 13 years old). However, this move will not occur until around your 16th birthday. Over time, the Paediatric CF Team will prepare you for the move.  They will help you to learn new skills to increase your feelings of independence and confidence to take charge of your own healthcare.  The Adult CF Team understands that transition can be a stressful time for some patients and their parents/carers, and that time is needed to understand and develop trust in the new service.
 

Recent developments in transition

Over the past ten years, we have spent time looking at research regarding the transition process for CF patients and for patients with other long-term conditions elsewhere in the UK, Europe and further a field in order to consider improvements that we can make for our patients.  We have also used questionnaires and interviews to find out about our own patients’ experiences of the transition process, as well as their parents’/carers’ opinions.  We have shared these findings in our CF newsletter.  In addition, we have been working closely and meeting more regularly with the Paediatric CF Team at the Royal Hospital for Sick Children to discuss and develop how we manage transition.
 

New Parents’/Carers’ Transition Open Evening

As a result of this recent work, in 2013 we decided to start running an informal evening once a year at Ward 54, Western General Hospital for parents/carers of young adults transferring to the Adult CF Service.  This evening gives parents/carers the chance to raise any concerns or questions they have about the move with the Adult CF Team.  It also allows them the opportunity to meet some other parents/carers of young adults who are transitioning and to visit Ward 54 before the move.
 

The transition story so far

Just now, we continue to work on many developments:
 
  • We have updated our leaflet, ‘Transition to Adult CF Services’, which is awaiting printing;
  • We continue to work closely with our colleagues at the Royal Hospital for Sick Children to further improve the process;
  • We continue to gather feedback from patients and parents/carers;
  • We continue to modify the format of our Parents’/Carers’ Transition Open Evening;
  • We will be updating our ‘Getting To Know You’ questionnaire shortly.
 

Welcome!

We look forward to welcoming you to the Adult CF Service and getting to know you.  We know that it can be hard to leave behind a team that you know so well and trust so much.  We hope that you will feel as comfortable with us too after a while.  We see your transition to us as a whole new phase in your CF care and an opportunity to also consider with us the other areas of your life that are important and the goals that you wish to achieve.
 

Feedback

If you would like to find out more or suggest any improvements to the transition process, please get in touch with Audrey Matthews, Clinical Psychologist or Catriona McMullan, Specialist CF Nurse on (0131) 537 1762.
 
 
 
 
 

Last Reviewed: 03/07/2015