Response 717054826

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Your details

Please select from below which best describes you.

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(Required)
Individual who takes clozapine
Whānau, family and/or caregiver of an individual who takes clozapine
Medical doctor
Pharmacist
Nurse
Other healthcare professional

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You may publish this submission.
Do not publish this submission.

General questions

Which best describes you and how you take medicines, including clozapine? You may click more than one answer.

Please select all that apply
I look after my medicines myself
I have help with my medicines from my whānau, family and/or caregivers
I have help with my medicines from my mental health team
I am in hospital and have help with my medicines from nurses or other healthcare professionals
None of the above: please tell us more below
Please provide your answer below
Because it was in depo form. As I said I'm not on it at the moment but have been in Redacted textand again in around Redacted text

Approximately, how long have you been taking clozapine regularly (i.e., without stopping)?

Please select one item
Less than 3 months
Between 3 months and 12 months
Between 1 and 5 years
More than 5 years
I am not sure

Interaction with healthcare professionals

Which healthcare professionals do you see when taking clozapine? You may select more than one answer.

Please select all that apply
Doctor
Nurse
Pharmacist
Mental health team
Support worker
Social worker
Other healthcare professional: please tell us more below

When do you see your doctor about clozapine?

Please select one item
Every week
Every 4 weeks or monthly
Every 3 months
I am not sure
Other: please tell us more below

When do you see a pharmacist to collect your clozapine?

Please select one item
Every week
Every 4 weeks
Every 3 months
Someone else collects my medicines for me or my medicines are delivered
I am not sure
Other: please tell us more below

Side effects of clozapine

Where do you find information about possible clozapine side effects? You may click more than one option.

Please select all that apply
Medicine information leaflets
Asking healthcare professionals
Asking whānau, family and/or caregivers
Social media
I am not sure
Other: please tell us more below
Please provide your answer below
Had to get information printed from the internet while in hospital. It was hard to get this and no side effects were ever thought valid.

If you experience a possible side effect from clozapine, who do you usually talk to? You may click more than one option.

Please select all that apply
Doctor
Nurse
Pharmacist
Social worker
Whānau, family and/or caregivers
I am not sure
Other people: please tell us more below

Which side effect of clozapine would you usually tell someone about? You may click more than one option.

Please select all that apply
Not able to pass a bowel motion (constipation)
A high temperature or feeling unwell
An infection
Feeling sleepy
Saliva problems
Heart problems, such as palpitations or chest pain
I am not sure
Other side effects: please tell us more below
Please provide your answer below
Akathesia. Having a desperate need to stand and start walking for no reason. It goes along with high anxiety, not sure if they're the same or different side effects.
Redacted text found me unresponsive neither happy or sad but just flat.
Weight gain.

Do healthcare professionals ask you about possible side effects of clozapine?

Please select one item
Yes
No
I am not sure

Have you reported a side effect to the Centre for Adverse Reactions Monitoring (CARM) New Zealand?

Please select one item
Yes
No
I am not sure

Constipation and clozapine

Have you ever experienced constipation with clozapine? (Constipation is when you struggle to pass a bowel motion)

Please select one item
Yes
No
I am not sure

Do you take medicines to help with constipation?

Please select one item
Yes
No
I am not sure

Have you ever had to interrupt or stop your clozapine treatment due to constipation or bowel problems?

Please select one item
Yes
No
I am not sure

Blood tests and clozapine

When do you currently have blood tests for clozapine?

Please select one item
Weekly
Fortnightly
Every 4 weeks
I am not sure

Have you ever had to interrupt or stop your clozapine treatment due to a blood test result?

Please select one item
Yes
No
I am not sure

Do you experience any difficulties getting a regular blood test?

Please select one item
Yes
No
I am not sure

Would you like to make any changes to the blood testing requirements for clozapine?

Please select one item
Yes
No
I am not sure
If you would like to provide any further information to your answer above, please provide this below
I think they should stop all depo psychiatric medications.
Nobody listens or cares about any side effects.

Feedback

Do you have any other feedback or information about clozapine that you would like to tell us?

Please provide your answer below.
As I said I haven't been on it since about Redacted text
Also I was on a depo called piportal or something similar at around Redacted textwhich was torture. I complained ad nauseum about my horrific side effects and nobody listened or cared. I couldn't sit but I could only walk so far each day. I would literally stare at the second hand on my watch just to see time pass. I felt so desperately unhappy and I was even too miserable to even think about Redacted text
I don't know what all the difference meds effects are on my body and emotions long term but I feel very old for my age, I'm certain I lost my teeth to the meds and the problems started with clozapine or something else I was forced into taking in Redacted text