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ANNEX IV: TOPIC GUIDE, Long Term Conditions
Focus group topic guide: Long term conditions
Background
General discussion about when they first had their long term condition and how it affects their every day life
Their diagnosis
How did you first discover you had the condition?
Was this diagnosis given quickly enough?
Did you get the support they needed at this stage - physical, emotional, social?
Information about your condition
Do you feel that you understand enough about your condition?
Do you feel that any options for treatment have been explained to you?
Do you have all the information you need to keep yourself as healthy as possible?
Are there questions and concerns about you condition that you would like answered?
Main person for healthcare
Who is the main person that you see about their condition?
Where do you see that person and how often?
Can you get to see that person whenever you need to?
Does that person have the expertise you need?
Apart from the main person you see, which other healthcare professionals do you see about their condition?
Main place for healthcare
Do you receive most of their care locally - in the community or at a hospital?
Is this important to you?
Do you mind travelling further to see people with greater expertise?
Routine Appointments
Do you have routine, planned appointments about your condition?
Who is this with, and where?
Is this often enough, or too often?
Co-ordination of care
Do you feel that the care is organised and co-ordinated for you?
Is their a care plan that you follow? Is this something that you helped to develop?
Do you have/need regular reviews of the condition? Is this carried out often enough?
Involvement in decisions
Do you want to be involved in decisions, or leave that to the healthcare professionals?
Are you involved as much as you want to be?
Are there things that you would like to be more involved in?
Self Management
Do you feel that you want to manage your care yourself, as much as you can?
If so, do you have enough information, enough support to do this?
What else do you need to help you manage your own condition?
Your care and treatment
Do you feel that you are getting the best care and treatment for your condition?
Are there any treatments that you haven't had that you think you should have had?
Is there any additional support or help from the NHS that you are not getting that you would like?
Is there additional social support that you are not getting that you would like?
Medicines
Are they using any medicines to help with you condition?
Do you know enough about what the medicines are for?
Do the medications cause any side-effects? Does someone help you to manage those side-effects?
Are the medications reviewed regularly?
Health Promotion
Have you wanted advice or help with up smoking, healthy eating or exercise?
Has it been possible to get help?
Emergency Care
Do you ever need to see someone urgently about the condition?
Who do you contact?
Are you able to see someone as soon as you need to?
Support Groups/ Patient Groups
Have you been put in touch with someone else who has the same condition as you?
Have you been given any information about support groups for people with your condition?
Are you in contact with a support group?
Anything else?
- Are there things that we haven't discussed that are important?
- Is there anything particularly good about the NHS services you receive?
- Is there anything that needs to be improved?
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