Epilepsy Care at the transition from child to adult services

 

Epilepsy care at the transition from children and young people’s services to adult epilepsy services

 

Young person (YP) transition clinics are currently provided across Lancashire and South Cumbria by Epilepsy Specialist Nurses (ESN) in Lancashire Teaching Hospitals (Preston), East Lancashire Hospitals Trust (Blackburn) and Blackpool Teaching Hospitals Trust.  

 

These clinics are available to support young people transition from young person services (also known as paediatric services), to adult services. 

 

We would like to understand the experiences of young people aged 14 and above, and their parents or carers about epilepsy services at the transition between children and adult services.  We are interested in understanding experiences, views and expectations, hopes, and fears about this move from children to adult epilepsy services.

We have created this questionnaire so that young people, parents and carers can let us know what you think.  If you would like to talk to us in more detail, we will need to have your permission (consent) for the Epilepsy Specialist Nurses (ESNs) to share your contact details. We will need you to sign a consent form for this purpose. 

 

When we have your permission and your contact details, we will contact you.

 

Once the survey, interviews and focus groups have finished. We will collate the information we have received and produce a report which will include recommendations for the NHS to help improve the transition of care from paediatric to adult services.  We will make this report available to those who contributed to the survey, interviews or focus groups, as well as staff.  

 

You can contact us at any time by email,  by marking your email for the attention of the Epilepsy Transition Engagement Team via the email:     lscicb.communications@nhs.net  

1. I am a

 

2. Which epilepsy service do you use ? 

 

3. How has your epilepsy care been so far ?

 

4. Please let us know why you gave your answer above, with examples if possible 

 

5. What are your worries or fears about the move from children to adult epilepsy services

 

6. What information do you need to feel happy about the transition from children to adult epilepsy care ?

 

7. Is there any information that we havent mentioned that you think is helpful or important ? 

 

8. What time would be best for an epilepsy clinic for young people at the transition of child and adult services ?

 

9. Where would you like the clinics to be held? 

 

10. How would you like the clinics to be run ? 

 

11. How would you like to be informed of your appointment

 

12. How do you prefer to receive health and related information?

 

13. What information would you need before you attend the clinic? 

 

14. After the clinic, what information or support might be helpful or important to you ?

 

15. What do you need to know, or find useful before you move from children to adult epilepsy services