RNIB Cataracts Survey Have Your Say

RNIB Cataracts Survey – Have Your Say

Thank you for taking part in our survey and for sharing your experiences of living with, and being treated for, cataracts. The National Institute of Health and Care Excellence are writing new guidelines to set out how healthcare professionals should treat and care for people with cataracts. RNIB will respond to the guideline consultation based on what people who’ve had cataracts tell us in this survey.
We will also use the findings to support the future work of RNIB in to support future work of RNIB in improving the care for people with eye conditions.
If you would prefer to take part in this survey over the phone, have any questions or are having difficulty completing this survey, please contact the campaigns hotline on or 020 7391 2123.

Q1 / To make sure we ask you the right set of questions for your circumstances. Have you...(choose one) / Tick the option that applies to you.
Already had cataract surgery on one eye / Go to question 2
Already had cataract surgery on both eyes / Go to question 2
Had cataract surgery on one eye and are awaiting second eye surgery / Go to question 2
Are awaiting cataract surgery on one eye / Go to question 11.1
Are awaiting cataract surgery on both eyes / Go to question 11.1
Other – comment box:
NOTE: we are only seeking responses from adults that are waiting for cataract surgery OR who have been treated for cataracts as an adult.
Q2 / How long ago was your cataract surgery (or first eye cataract surgery if still awaiting second eye surgery) (choose one)
Less than 3 months
3-6 months
6 months-1 year
1-2 years
2-5 years
Over five years ago
Over ten years ago
Don’t remember
Q2.1 / When you were first told you needed cataract surgery, what waiting time were you led to expect?
Q2.2 / Once you’d received a date for your surgery, was the operation rescheduled or postponed? (choose one)
Yes
No, everything went ahead as scheduled
Don’t remember
Q2.2.1 / If yes to Q2.2, how long was the overall delay? (choose one)
Less than one week
1-2 weeks
3 weeks-1 month
2-3 months
4-6 months
7 months- 1 year
Over one year
Don't remember
Q2.2.2 / Were you given a reason for the delay(s)? (choose one)
Yes
No
Don't remember
If yes, what was the reason(s) given?
Q2.2.3 / How did you feel about this delay?
Q2.3 / If you experienced a delay, was there a specific delay between your first and second eye surgery?(choose one)
Yes
No

We want to make sure that the things that NICE say patients must be told are the right things at the right time, and to check that there isn't anything missing that would be helpful to patients like you.

Q4.1 / What types of information did you receive when you were referred to the hospital for cataract surgery? (choose all that apply – read each one) / Yes / No / Don’t remember
What cataracts are
How cataracts affect your sight
How cataracts affect your day to day life
Information about the surgery itself (what it involves, how long it will take)
How long the recovery time is
The risks to you of having the surgery
What support you might need after the surgery
What could happen if you don’t have the surgery
Other – list:
Q4.2 / Did you feel that you had the right information to consent to having the surgery at this stage? (choose one)
Yes
No
Don’t remember
Explain why for both yes and no answers – comment box:
Q4.3 / Was there any other information that would have been helpful to you at the referral stage/was there anything missing?
List – comment box:
Q5.1 / What types of information did you receive during the assessment before your operation?(please give an answer for each) / Yes / No / Don’t Remember
Implications of the various lenses available
About the anaesthesia
The risk to you of having the surgery
What to do and what to expect on the day of the surgery
What to do and what to expect after the surgery
What support might be needed after the surgery
Discussion about medications or medicines
The date of the surgery
Other – list in comment box:
Q5.2 / Were you aware that after your cataract surgery you would need glasses?(choose one)
Yes
No
Don’t remember
Q5.2.1 / If no, would this information have been helpful and why?(choose one)
Yes
No
Explain why – comment box
Q5.3 / Did you feel that you had the right information to consent to having the surgery? (choose one)
Yes
No
Don’t remember
Explain why – comment box:
Q5.4 / Was there any other information that would been helpful before your surgery?
Q6.1 / What types of information did you receive on the day of youroperation? (Please give an answer for each option) / Yes / No / Don’t Remember
Before the operation - Your position on the list for the surgery that day
Before the operation - What to expect during and after the surgery
After the operation – what changes to your vision to expect
After – signs and symptoms of potential complications to look out for
After – information about any restrictions such as driving while you recover
After – Possible problems and emergency situations
After – Who to contact if there are any problems
After – Information about eye drops
After – Pain management
After – Your next appointment and who you will see
Other – list:
Q6.2 / Did you feel that you had the right information to consent to surgery on the day of youroperation? (choose one)
Yes
No
Don’t remember
Explain why:
Q6.3 / Were you given an opportunity to ask questions on the day of the operation? (choose one)
a. / Yes
b. / No
Q6.4 / Was there any other information that would have been helpful on the day of your surgery?
Q7.1 / What types of information did you receive during your post-operative assessment?(Please given an answer for each option) / Yes / No / Don’t Remember
Information about eye drops
What to do if anything changes with your vision
Who to contact if you had any questions
When it is appropriate to get new spectacles and how to do so
Information about second eye surgery
Other – list in comment box:
Q7.2 / Was there any other information that would have been helpful after yoursurgery?
Q7.3 / Did the eye department ask you any questions about your satisfaction with the whole of your treatment from the referral appointment to the operation itself? (choose one)
Yes
No
Comment box:
If yes, what did they ask you and what did you feedback?
If no, would you have wanted to give your feedback and on what?
Q7.4 / Did you complete any patient satisfaction questionnaires? (choose one)
Yes
No

The information you receive and support you need when you are being treated for cataracts is really important. In this final set of questions we want to hear about the format in which you received information, any support you required and a bit more about your general experience.

Q8.1 / What format did you receive information in at the various stages? (choose one)
Information given in conversation only (nothing written down)
In conversation and in written format sometimes
In conversation and in written format every time
Other
Q8.1.1 / Did this format suit your needs? (choose one)
Yes
No
Comment box – if no, what would have been better?
Q8.2 / Did you know that you could request written information in an accessible format, for example in large print or braille? (choose one)
Yes
No
Q8.3 / If yes, did you ask for information in an accessible format?
a. / Yes
b. / No
Q8.4 / If yes, what was your experience of getting information in an accessible format?
Q8.5 / At each stage of your treatment from referral to surgery and post op, were the risks of surgery explained to you in a way that you could understand?
a. / Yes
b. / No
Q9.1 / Since your initial referral, have you felt worried or anxious about any aspect of your treatment?(choose one)
Yes (please tell us how you felt)
No (please tell us how you felt)
Q9.2 / Since your initial referral, have you needed any support or reassurance deal with the worries and anxiety about surgery?(choose one)
Yes
No
Q9.2.1 / If yes, when did you need this support (tick all that apply):
At the referral
Before the surgery
On the day of the surgery
After the surgery

General:

Q10.1 / How many hospital visits did you make in total for your cataract treatment? (just ask question and tick)
2
3
4
5+
Don’t remember
Q10.2 / Did you have to make a visit to your doctor about the surgery before the operation? (choose one)
Yes
No
Don’t remember
Q10.3 / If expecting to have second eye surgery only - would you have had bilateral surgery (that is, surgery on both eyes during the same operation)? (choose one)
Yes
No
Please tell us why
Q10.4 / Is there anything else that would have helped make your overall experience better?
Comment box:

Please go to Question 20

Please answer these questions if you chose option d or e for question 1.a

Q11.1 / Do you have a date for your surgery? (choose one)
Yes
No, not yet
Q11.1.1 / If yes, when is it scheduled for?(choose one)
June
July
August
Sept
Oct
Nov
Dec
2018
Comments:
Q11.2 / Has there been any delay(s) to your planned surgery? (choose one)
Yes
No
Q11.2.1 / If yes to Q3.2, how long has the delay been so far? (choose one)
Less than one week
1-2 weeks
2 weeks-1 month
1-3 months
3-6 months
6 months- 1 year
Over one year
Don't remember
Q11.2.2 / Were you given a reason for the delay(s)? (choose one)
Yes
No
Don't remember
If yes, what was the reason(s) given?
Q11.2.3 / How did you feel about the delay? (prompts: did the delayimpact on your day to day life, your general health?)
Comment box:

The new guidelines that NICE have put together say that cataract patients like you should receive very specific information at key moments during your treatment. These key moments are at your referral, before your operation (the pre-operative assessment appointment), on the day of your surgery and after your surgery (the post-operative assessment).
We want to make surethe things that NICE say patients must be told are the right things at the right time, and to check that there isn't anything missing that would be helpful to patients like you.

Q12.1 / As someone who is waiting for surgery to take place, what has happened so far? (tick all that apply)
Referral to hospital from your optician or GP
The assessment before your operation
Q13.1 / What types of information did you receive when you were referred for cataract surgery? (choose all that apply – read each one) / Yes / No / Don’t Remember
What cataracts are
How cataracts affect your sight
How cataracts affect your day to day life
Information about the surgery itself (what it involves, how long it will take)
How long the recovery time is
The risks to you of having the surgery
What support you might need after the surgery
What could happen if you don’t have the surgery
Other – list:
Q13.2 / Did you feel that you had the right information to consent to having surgery? (choose one)
Yes
No
Don’t remember
If you answered yes or no, explain why
Q13.3 / Was there any other information that would have been helpful to you at the referral stage/was there anything missing?

If you have had a pre-operative assessment, please continue to question 14.1, if you have not please go to question 15.1.

Q14.1 / What types of information did you receive at the assessment before your operation?(choose all that apply – read each one) / Yes / No / Don’t Remember
Implications of the various lenses available
About the anaesthesia
The risk to you of having the surgery
What to do and what to expect on the day of the surgery
What to do and what to expect after the surgery
What support might be needed after the surgery
Discussion about medications or medicines
The date of the surgery
Other – list in comment box:
Q14.2 / Were you aware that after your cataract surgery you would need glasses?
Yes
No
Q14.2.1 / If no, would this information have been helpful and why?
Yes
No
Explain why – comment box
Q14.3 / Did you feel that you had the right information to consent to having the surgery at this stage?
Yes
No
Don’t remember
Explain why – comment box:
Q14.4 / Was there any other information that would been helpful before the surgery (at the pre-operative assessment)/was there anything missing?

Q15.1 / What format have you received information about your surgery in so far?
Information given in conversation only (nothing written down)
In conversation and in written format sometimes
In conversation and in written format every time
Other
Q15.1.1 / Did this format suit your needs?
Yes
No
Comment box – if no, what would have been better?
Q15.2 / Did you know that you could request written information in an accessible format (for example large print or braille)?
Yes
No
Q15.3 / If yes, did you ask for information in an accessible format?
a / Yes
b. / No
Q15.4 / If yes, what was your experience of getting information in an accessible format?
Comment box:
Q15.5 / So far, have the risks of surgery been explained to you in a way that you could understand?
a. / Yes
b. / No
Q16.1 / Since your referral, have you felt worried or anxious about any aspect of your treatment?(choose one)
Yes – Comment box:
No – Comment box:
Q17.1 / Since your referral, have you needed any support or reassurance to help manage the emotional impact?
Yes
No
Q17.1.1 / Do you think you will need support or reassurance at the following stages:
Before surgery
On the day of surgery
After surgery
Q19.1 / Do you have any worries about your second eye surgery?
Q19.2 / Is there anything else that would have helped make your experience so far better?

About You!

Q20 / What is your gender?
Female
Male
Other
Prefer not to say
Q20.2 / What is your age? (do not read the list out, just tick the right box when the respondent gives their age)
18 to 24
25 to 34
35 to 44
45 to 54
55 to 64
65 to 74
75 to 84
85 to 94
95+
Prefer not to say
Q20.3 / What region of the UK do you currently live in?
East Midlands
London
North East
North West
Northern Ireland
Scotland
South East
South West
Wales
West Midlands
Yorkshire And The Humber
Prefer not to say
Q20.4 / Do you have any other eye condition(s) along with cataracts?
Yes
No
Q20.4.1 / If yes, what are these?
AMD
Glaucoma
Diabetic retinopathy
Diabetic eye disease
Retinitis pigmentosa
Injury
Detached retina
Other (please specify)
Q20.5 / How did you hear about this survey?
a. / RNIB Campaigns – newsletter, email etc.
b. / RNIB – Connect Community newsletter
c. / RNIB – Patient Experience Questionnaire
d. / RNIB – Can’t recall the specific newsletter etc.
e. / Age UK
f. / Diabetes UK
g. / Local Society – e.g. talking newspaper
h. / Pensioners information
i. / Another sight loss organisation
j. / Hospital or Ophthalmologist
k. / Other (please specify)

THANK YOU!

Thank you for sharing your experiences of living with and treatment for cataracts. Your answers will help us to ensure that patients’ voices are heard in the forming of the new NICE Clinical Guideline for the treatment of cataracts. You are helping thousands of people across the country living with this condition to get the best care possible.

We would love to keep in touch with you - if you'd like to find out more about our campaigning and what we're doing simply visit ourwebsite. You can keep up to date with all our campaigning by signing up to ourCampaign Supporters Network.

PLEASE RETURN THIS SURVEY BY FRIDAY 16 JUNE TO:

RNIB ADVOCACY, 105 JUDD STREET, LONDON, WC1H 9NE