Paediatrics Sickle Cell Survey
1.
Where was the last place you went for your usual sickle cell appointment?
Please just think about pre-booked visits, not emergency care
Overnight stay in hospital (inpatient)
Day unit in hospital - e.g. for pain relief or blood transfusions
Hospital outpatient or clinic appointment
GP / family doctor
Other (please specify)
2.
How long ago was this?
Within the last 6 months - Go to Question 3
More than 6 months ago - Go to Question 9
Can’t remember - Go to Question 9
3.
Did the doctors and nurses that you saw know enough about sickle cell?
Yes, definitely
Yes, sort of
No
4.
Thinking about this recent appointment for your sickle cell (as indicated in Question 1)
Did the doctors and nurses talk to you (rather than your parent/carer) in a way that you could understand?
Yes, definitely
Yes, sort of
No
5.
Did the doctors and nurses answer your questions clearly?
I did not have any questions
I did not have the chance to ask
Yes, definitely
Yes, sort of
No
6.
Were the doctors and nurses friendly and helpful?
Yes, completely
Yes, sort of
No
7.
Did you (rather than your family) have the chance to speak to staff if you needed to?
Yes, completely
Yes, sort of
No
I did not need to
8.
Could you choose to have your parent or carer with you at this appointment?
Yes
No, but I did not mind
No, but I would have liked this
9.
When did you last need urgent treatment because you were poorly with sickle cell?
I never had urgent treatment - Go to Question 14
Within the last 6 months - Go to Question 10
More than 6 months ago - Go to Question 14
Can’t remember
Go to Question 14
10.
When you last had urgent treatment for your sickle cell, what did you and your parent first do for help?
Please select ONE only. If you went to more than one then please select the one you went to FIRST.
Called a specialist sickle cell nurse - Go to Question 11
Treated at home without contacting anyone - Go to Question 14
Went to a GP - Go to Question 11
Went to A&E - Go to Question 11
Called 999 for an ambulance - Go to Question 11
Other- Go to Question 11
11.
Did the emergency healthcare staff that you saw know enough about sickle cell?
Yes, definitely
Yes, sort of
No
12.
Were the emergency healthcare staff friendly and helpful?
Yes, completely
Yes, sort of
No
13.
Did the emergency staff help your pain go away?
Yes, quickly enough
Yes, but it could have been quicker
No, they did not help make my pain go away
I was not in any pain
14.
Within the last year, have you stayed on a hospital ward, either overnight or on a day unit (e.g. to receive treatment)?
This does NOT include outpatient/clinic
appointments.
Yes, within the last year - Go to Question 15
No, not within the last year - Go to Question 17
15.
Was the ward that you stayed on suitable for your age?
Yes, definitely
Yes, sort of
No
16.
Do you think that there were enough doctors and nurses to look after you on the hospital ward?
All or most of the time
ome of the time
Not really or never
17.
Do you have enough information about your sickle cell?
Yes, definitely
Yes, sort of
No
18.
Which of the following do you use to find out information about sickle cell?
Please tick ALL that apply
NHS or sickle cell centre website
Sickle Cell Society
Leaflets and other written information
Asking NHS staff
Google searches
YouTube videos
Ask friends and family
None of the above
Other (please specify)
19.
Do healthcare staff give enough information to others (such as school, college or place of work) about your condition and how it affects you?
Yes, enough information
Some, but not enough information
None, but I would like this
This is not needed
I do not go to school / work
Don’t know / not sure
20.
Do you have enough information about different treatment options (such as medications)?
Yes, definitely
Yes, sort of
No, but I would like this
This is not needed
21.
Do you have a say in what happens with your care?
Yes, definitely
Yes, sort of
No, but I would like this
This is not needed
22.
Do you have enough information about when and how to use your medication?
Yes, definitely
Yes, sort of
No
I do not use medication
23.
Do you have enough information about coping with pain?
Yes, enough information
Some but not enough information
Very little or no information
24.
Do your friends know enough about sickle cell and understand the condition?
Yes, they know enough
They know some, but not enough
They know little or nothing
It is not needed
Don’t know
25.
Do you have information about support groups for your condition (e.g. Sickle Cell Society or local support groups)?
Yes, enough information
Some but not enough information
No, but I would like this
I do not want or need this
26.
Do you have the chance to meet other people with sickle cell, for support?
Yes, and I find this helpful
Yes, but I do not find this helpful
No, but I would like this
I do not want or need this
27.
Do you think you are given enough help to cope with your sickle cell?
Yes
No, but I would like this
No, but I do not need this
28.
Do you ever have to repeat your story to different members of healthcare staff?
Yes, and this bothers me
Yes, but I do not mind
No
29.
Overall, how well do you think your sickle cell is looked after by healthcare staff?
Very well
Quite well
Not very well
30.
Does sickle cell cause you difficulty with any of the following?
Please tick ALL that apply
Everyday activities that people your age can usually do
At work, at school, or training
Access to buildings, streets or vehicles
People’s attitudes to you because of your condition
Communicating, mixing with others or socialising
Any other activity
No difficulty with any of these
31.
1 How old are you (in years)?
32.
What do you identify as?
Male
Female
Non-Binary
Transgender Male
Transgender Female
Other (please specify)
33.
Please provide us with the FIRST part (ie. OX3, OX17) of your postcode:
34.
Who was the main person who completed this questionnaire?
The young person / patient
The parent / carer of the young person / patient
Both parent / carer and young person together
Other
35.
Please describe in three words how living with sickle cell makes you feel.
36.
Is there anything that is good about the care you receive for your sickle cell?
37.
Is there anything about the care you receive for your sickle cell that could be better?
