UKTS Parent- Carer Experience Survey

ParentCarerOther
Parent
Carer
Other
FemaleMaleNon-BinaryPrefer not to say
Female
Male
Non-Binary
Prefer not to say
FemaleMaleNon-BinaryPrefer not to say
Female
Male
Non-Binary
Prefer not to say
0-56-1011-1516-1818-2526-4040+
0-5
6-10
11-15
16-18
18-25
26-40
40+
YesNo
Yes
No
YesNo
Yes
No
YesNo
Yes
No
YesNo
Yes
No
GoodFairPoor
Good
Fair
Poor
GoodFair
Good
Fair
YesNo
Yes
No
YesNo
Yes
No
YesNo
Yes
No
YesNo
Yes
No
YesNo
Yes
No
Yes, alwaysYes, sometimesNo
Yes, always
Yes, sometimes
No
YesNo
Yes
No
YesNo
Yes
No

Blood Transfusions

Seen on time/ earlyWithin 15 minsWithin 30 minsWithin 45 minsOver 60 mins
Seen on time/ early
Within 15 mins
Within 30 mins
Within 45 mins
Over 60 mins
Bad careModerate careGood carevery good careExceptional care
Bad care
Moderate care
Good care
very good care
Exceptional care
YesNo
Yes
No

Specialist Care and Monitoring

Twice a yearOnce a yearOnce every two yearsOther (please specify)
Twice a year
Once a year
Once every two years
Other (please specify)
Every monthEvery 3 monthsOnce a yearI don’t know blood test are taken
Every month
Every 3 months
Once a year
I don’t know blood test are taken
Once a yearEvery two yearsNeverOther (please specify)
Once a year
Every two years
Never
Other (please specify)
Once a yearEvery two yearsNeverOther (please specify)
Once a year
Every two years
Never
Other (please specify)
Once a yearEvery two yearsNeverOther (please specify)
Once a year
Every two years
Never
Other (please specify)
Once a yearEvery two yearsNeverOther (please specify)
Once a year
Every two years
Never
Other (please specify)
YesNo
Yes
No
YesNo
Yes
No
YesNo
Yes
No
YesNo
Yes
No
YesNo (please go to Q42)
Yes
No (please go to Q42)
PoorFairGoodVery GoodExceptionally good
Poor
Fair
Good
Very Good
Exceptionally good

Thalassaemia Clinic Appointments

Very difficultDifficultFairEasy
Very difficult
Difficult
Fair
Easy
YesNo
Yes
No
YesNoTo some extent
Yes
No
To some extent
YesNo
Yes
No

Accident and Emergency

Once2- 3 times4-7 timesOver 8 timesNever (please go to question 56)
Once
2- 3 times
4-7 times
Over 8 times
Never (please go to question 56)
PoorFairGoodVery goodExceptionally good
Poor
Fair
Good
Very good
Exceptionally good
YesNo
Yes
No
YesNo
Yes
No

Inpatient care / Ward

YesNo (Please go to Q54)
Yes
No (Please go to Q54)
PoorFairGoodVery goodExceptionally good
Poor
Fair
Good
Very good
Exceptionally good
YesNo
Yes
No

Support

Thank you for participating in this survey!