Adults Sickle Cell Survey
Appointment
1.
Where did you last receive care for your sickle cell condition? - 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 7
Can’t remember - Go to Question 7
3.
Did the healthcare staff that you saw know enough about sickle cell disorder?
Yes, definitely
Yes, to some extent
No
4.
Did healthcare staff talk to you in a way that you could understand?
Yes, definitely
Yes, to some extent
No
5.
Did healthcare staff answer your questions clearly?
I did not have any questions
I did not have the chance to ask
Yes, definitely
Yes, to some extent
No
6.
Were healthcare staff sympathetic and understanding?
Yes, definitely
Yes, to some extent
No
7.
When did you last have emergency or urgent care for your sickle cell disorder?
I never had urgent/emergency care - Go to Question 13
Within the last 6 months - Go to Question 8
More than 6 months ago - Go to Question 13
Can’t remember - Go to Question 13
8.
When you last had emergency care for your sickle cell disorder, what did you 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 9
Treated at home without contacting anyone - Go to Question 13
Went to a GP - Go to Question 9
Went to A&E - Go to Question 9
Called 999 for an ambulance - Go to Question 9
Other - Go to Question 9
9.
Why did you decide to do this first?
Please tick ALL that apply
I thought it would be quicker
It was late in the evening/night and the only place that was open
It was an emergency
I thought there would be better care
I did not know what else to do
Other (please specify)
10.
Did the emergency healthcare staff that you saw know enough about sickle cell disorder?
Yes, definitely
Yes, to some extent
No
11.
Were the emergency healthcare staff sympathetic and understanding?
Yes, definitely
Yes, to some extent
No
12.
Did the emergency staff help ease your pain?
Yes, quickly enough
Yes, but it could have been quicker
No, they did not help ease my pain
I was not in any pain
13.
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 14
No, not within the last year - Go to Question 16
14.
Was the ward that you stayed on suitable for your age?
Yes, definitely
Yes, to some extent
No
I had my own room
15.
In your opinion, were there enough doctors and nurses on duty to care for you on the hospital ward?
All or most of the time
Some of the time
Rarely or never
16.
Do you have enough information about your sickle cell condition?
Yes, definitely
Yes, to some extent
No
17.
Which of the following do you use to find out information about sickle cell disorder? Please tick ALL that apply
NHS or sickle cell centre website
Sickle Cell Society
Leaflets and other written information
Ask NHS staff
Google searches
YouTube videos
Ask friends and family
None of the above
Other (please specify)
18.
Do healthcare staff give enough information to others (such as your place of work/study) 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 work/study
Don’t know/not sure
19.
Do you have enough information about different treatment options (such as bone marrow transplant and blood transfusions)?
Yes, definitely
Yes, to some extent
No, but I would like this
This is not needed
20.
Are you involved enough in decisions about your condition and different treatment options?
Yes, definitely
Yes, to some extent
No, but I would like this
I do not want or need to be
21.
Do you have enough information about when and how to use your medication(s)?
Yes, definitely
Yes, to some extent
No
I do not use medication
22.
Do you have enough information about coping with pain?
Yes, enough information
Some but not enough information
Very little or no information
23.
Do your friends and co-workers know enough about sickle cell disorder 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
24.
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
None, but I would like this
I do not want or need this
25.
Do you have the chance to meet other people with Sickle Cell Disorder, 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
26.
Have you been offered the chance to see a counsellor or psychological services for support with your condition?
Yes
No, but I would like this
No, but I do not need this
27.
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
28.
Overall, how well do you think your sickle cell disorder is looked after by healthcare staff?
Very well
Quite well
Not very well
29.
Does sickle cell disorder cause you difficulty with any of the following?
Please tick ALL that apply
Everyday activities that people your age can usually do
At work, in 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
30.
How old are you?
31.
What do you identify as?
Male
Female
Non-Binary
Transgender Female
Transgender Male
Other (please specify)
32.
Please provide us with the FIRST part (i.e. OX3, OX17) of your postcode:
(This is to help us see if there are differences in care around the country)
33.
Please describe in three words how living with sickle cell disorder makes you
feel.
34.
Is there anything that is particularly good about the care you receive for your
sickle cell disorder?
35.
Is there anything about the care you receive for your sickle cell disorder that
could be better?
