Child/Young Person Questionnaire


CONFIDENTIAL

What is this study about?

This is part of a big study that hopes to learn how health services work together to support children and young people with cerebral palsies and their families.

Information is being collected across the UK.

We are very keen to hear what is working well for you. We also would like to know what is not working so well, so that we can highlight this and recommend how to improve services in the future.

Who should complete this form?
Please answer this form if you are:
  • 0-25 years old
  • Have a diagnosis of cerebral palsy (this may be called by a different name, for example: Hemiplegia, Diplegia, Quadriplegia, Tetraplegia etc.)
At the end of the questionnaire we ask some questions about your own condition and how it affects you. This is because we want to learn about the whole range of services for disabled children and young people, from those who can join in with the things they want to do to those who depend on other people for all of their care and support.

As well as choosing the answers that fit best for you, you can choose to add your own comments if you can or would like to. All of your responses will be kept private.

Please share this questionnaire with other children and young people with cerebral palsies too, so that they can have the chance to have their say.

Click submit at the bottom once you have answered the questions.
   
We would like to know if the health services you receive work for you or not.

Please think from your point of view about health services that you receive now or have received in the past, and tell us:
1. Up to three things that are going well?  
a.
b.
c.
   
2. Up to three things that could be improved?  
a.
b.
c.
   
We know that your health and wellbeing is affected by other services too, such as equipment, education, social care, voluntary organisations and independent services.

Please think about these other services that you receive and tell us:
3. Up to three things that are going well?
a.
b.
c.
   
4. Up to three things that could be improved?
a.
b.
c.
   
5. This question is about whether the health professionals working with you listen to you and take account of your views in all decision-making about you and your health care. Choose one of the following options:
 


Comments:
   
6. This question is about how you receive your healthcare. Choose one of the following options:
 






Comments:
   
7a. When you have a health concern, which part of the health service is your first point of contact when the concern is:
i. Urgent?
ii. Not urgent?
   
7b. If you have used any of the following services, how confident are you that any urgent health needs (e.g. long or difficult seizures, serious breathing problems, injuries) will be fully addressed by the:
  Not at all confident Extremely confident
GP team
Paramedic 999 ambulance
Emergency Department (A&E)
Specialist Nurse
Paediatrician
Other (please specify)
Comments:
   
7c. If you have used any of these services, how confident are you that your usual (non urgent) health needs (e.g. pain, constipation etc.) will be fully addressed by the:
  Not at all confident Extremely confident
GP team
Emergency Department (A&E)
Specialist Nurse
Paediatrician
Other (please specify)
Comments:
   
8a. Have you moved from children’s to adult services?
 
   
8b. If YES, how well did this work for you?
  Not at all well  Extremely well
 
   
8c. Is the care you receive in adult services:
 
Comments:
   
To help us to make the best sense of your responses, we would like to know about the impact of your cerebral palsy.
9. Please choose only ONE option that best describes your movement abilities:
 





   
10. Please choose which of the following issues also affect you (choose all that apply):
 












   
11a. Which COUNTRY do you live in?
 
   
11b. which COUNTY do you live IN?
 
   
12. How old are you?     
   
13. Would you be willing to be contacted again about this work, to consider taking part in further surveys or focus groups?
 
(If you are willing to be contacted again about this work, such as to take part in further surveys or focus groups, please contact us at cp@ncepod.org.uk.)
   
A big thank you for taking the time to answer these questions. We will make sure that all answers are taken into account as we continue the project. All answers will feed in to the final report.