Personal challenges
Schizophrenia cannot be cured in the same way that an infection can be cured with antibiotics. However looking at the outcomes over ten years from diagnosis, the following observations have been made:
- A large proportion of people who experience an episode of psychosis (about 25% to 30%) will recover to lead a normal lifestyle and will have no further problems during their lifetime
- A further 25% will be much improved on medication
- 25% will show some improvement on medication but may experience several relapses and may never be able to work
- 15% will lead a chronic course experiencing repeated relapses and being substantially handicapped by their condition
Clozapine is a recommended medicine for treatment resistant schizophrenia (TRS).
As with all medicines, clozapine must be taken as instructed by the healthcare professionals and monitored for its effectiveness and any side-effects.
Social reintegration
Social integration allows people to build and maintain meaningful relationships with other people living in the community. It is of great importance for well-being but can be a challenge for sufferers of a serious mental health illness (like schizophrenia), who may have low self-esteem and lack confidence, making it more difficult for them to re-integrate.
It is important that patients comply with the instructions given to them by their healthcare professionals about taking clozapine to have the best chance of controlling symptoms of schizophrenia and better integration into society.
Support is available to help people with schizophrenia to re-integrate into society and, when possible, to return to work.
Carer considerations
Carers of people with schizophrenia are often family members or social services employees. Providing care for a person with schizophrenia can be challenging and carers may have many questions about schizophrenia and how they can provide support.
Living with Schizophrenia UK is a useful resource, providing information for both schizophrenia patients and carers.
Carers need to understand how important it is that schizophrenia patients take their medications as prescribed by the doctor and that they attend all appointments. These are very important for monitoring how well the medication is working and to identify any side-effects.
It is particularly important that patients taking clozapine attend doctor appointments and appointments to check their blood.
The role of the Clozaril® Patient Monitoring Service (CPMS) is key to minimising the risk of blood cell abnormalities whilst taking clozapine.
A list of services to help sufferers of schizophrenia is provided in the Support services section.
Lifestyle changes
Taking medication for schizophrenia will involve some lifestyle changes such as needing to attend more doctor and hospital appointments and watching out for any signs of side-effects. Patients may need to set themselves reminders to take their medicine. All of this may involve some changes in routine and the patient may need a little time to adjust.
Patients may find it helpful to inform others close to them about their new treatment and the possible side-effects.
It is important that patients remember to take their clozapine as instructed by the doctor and to contact their doctor if they think they might be experiencing any side-effects.
Tips for taking Clozaril® (clozapine) correctly
Remembering to take antipsychotic medication is an essential part of staying well. It is important that patients are clear about how to take clozapine. If they are not sure they should ask their doctor, nurse or local pharmacist for more information.
Patients should also be encouraged to read the patient information leaflet included in the medicine box.
If a patient is worried they may forget to take the medicine, they can set a reminder on their phone or in their diary. Another idea is to put post-it notes on the fridge or bathroom mirror to remind themselves, or they could consider getting a pillbox that holds a week's worth of pills. Pillboxes may be available from your pharmacist.
Special electronic timers like the Tab Timer are also available to help patients manage their medication.
Patients may also want to keep a record of when they have taken their medicine. One idea is to put a tick in their diary or calendar each day after taking the medicine.
Managing side-effects
The doctor, nurse or pharmacist should have informed the patient about any possible side-effects with clozapine and what to do should they occur. It may be useful for the patient to write this information down. Information about possible side-effects is also contained in the patient information leaflet inside the medicine box.
Patients should also inform any carers and family members of possible side-effects they may experience.
The patient’s doctor should monitor them closely for any side-effects. Communication between the patient and doctor, nurse and pharmacist is very important in managing side-effects. The patient should also know who to contact if they have any concerns.
If the patient experiences serious side-effects, the doctor may take the decision to stop clozapine treatment.
If the patient experiences any side-effects, please scroll down to the footer (bottom of this page) for further information.
Keeping healthy
In addition to taking clozapine as instructed by the doctor, taking care of their general health will contribute to a patient’s feelings of well-being. Eating well, enjoying social interactions and getting enough sleep will all contribute to this sense of well-being.
Patients may also want to set themselves goals each day or week of things they would like to achieve. Seeing the difference that clozapine treatment makes in helping them achieve these goals will encourage them to keep up with the treatment.
The Living with Schizophrenia UK website has many other tips for keeping healthy.
Appointment reminders
Doctor and blood test appointments are very important with treatment. Patients can set a reminder on their phone or in a place where they will see it, for example wall calendar or post-it notes around their home. They can also tell their carers as an extra precaution against forgetting these appointments.
CLZ-2022-0106 October 2023FAQs
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Q1Why are white blood cell numbers monitored?
Some people taking clozapine experience a significant drop in their neutrophil (a type of white blood cell) level, called neutropenia; this occurs in less than 1 in 10 patients.
Fewer than 1 in 100 patients who take clozapine will experience agranulocytosis - a large fall in their white blood cell count, most commonly neutrophils.
However, if neutropenia and/or agranulocytosis occur, it is usually within the first 18 weeks of treatment with clozapine.
It is not possible to predict who will develop a change in neutrophil levels, and so everyone who is treated with clozapine must be monitored for as long as they take the drug. Monitoring consists of regular blood tests to measure the number of white cells in the blood. Anyone who develops agranulocytosis or neutropenia while receiving clozapine should not be given clozapine again.
Routine blood monitoring will be organised by the treatment team.
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Q2How often do patients need to have blood tests?
Before a patient takes clozapine, they will need to have a blood test to check they have a ‘normal’ level of white blood cells. If this is OK and they start taking clozapine, they will need to have a blood test every week for 18 weeks. If everything is still OK, testing can change to once a fortnight.
After a patient has been on treatment for a year, blood tests should only be needed once every four weeks for as long as they take clozapine. If the patient stops taking this medication either permanently or for a short while, they will still need to have blood tests for some time afterwards to check their white blood cell level is OK.
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Q3How much blood is needed for testing?
A very small amount, only about 2-3ml, of blood is required for a blood test. Taking such a small amount has no effect on the patient’s body.
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Q4How else can regular blood testing help?
The most important reason for regular blood testing is to check the patient’s white blood cell level. However, regular testing also means that they will have regular contact with their treatment team, which gives them a chance to:
Check their progress and ask any questions
Discuss side-effects and ways to cope with them
Have an ongoing health check
Introduce their family or carers to the team
Get referred to other teams if necessary
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Q5What happens if the patient misses a blood test?
If the patient misses a blood test, they need to notify their treatment team as soon as possible to arrange to have the test, as it is important to have regular blood tests. The white blood cell level must always be checked before the doctor can give anyone clozapine.
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Q6When do I have to collect my (clozapine)?
Contact your doctor or nurse, and they will give you the details you need to know.
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Q7Will I be sedated?
Because clozapine may make people feel drowsy, activities such as driving and operating machinery should be avoided, particularly during the early weeks of treatment.
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Q8Will I become constipated with clozapine?
You may become constipated while you’re taking clozapine. If this happens, a few simple changes to your diet and lifestyle, such as increasing the amount of fibre you eat and taking more exercise, will usually help.
You should contact your doctor or nurse if you are worried about your constipation.
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Q9How long will I be on clozapine?
Your doctor will tell you how long you need to keep taking clozapine and discuss any changes in your treatment schedule.
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Q10How long will it take before clozapine begins to work?
Some people feel the benefit of clozapine within a few days, while others don’t feel the full benefit for a few months or even a year.
Clozapine should be taken for at least six months to give it a chance to work, unless the patient develops a side-effect that means they have to stop taking it.
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Q11What happens if a patient does not respond well to clozapine?
If a patient has not responded adequately to clozapine, the National Institute for Health and Care Excellence (NICE) recommends that after reviewing possible causes for a poor response, a second antipsychotic medicine can also be given. The doctor should choose a medicine that does not worsen the common side-effects of clozapine.
Support services
A number of support services are available for people with schizophrenia, including a number of charities that can provide further information, help and advice. They include:
Rethink
Rethink offer support through a wide range of services in order to improve the quality of life of people affected by severe mental illness.
www.rethink.org
info@rethink.org
0300 5000 927 or 0121 522 7007
Hafal
Support in Mind Scotland (NSF Scotland)
Support in Mind Scotland provides help for people affected by mental illness through support and information groups, telephone and written advice and other services.
www.disabilityscot.org.uk/organisation/support-in-mind-scotland/
info@supportinmindscotland.org.uk
0131 662 4359
SANE
Established to improve the quality of life for people affected by mental illness SANE aims to raise awareness and respect, to undertake research and to provide help and information to those suffering from mental health problems, their families and carers.
www.sane.org.uk
info@sane.org.uk
020 3805 1790
MIND
Mind provides literature and phone-line support for people in mental distress and their families. Advice, campaigns, local services, legal advice. 180 local Mind associations in England and Wales.
0300 123 3393
CLZ-2022-0105 October 2023
Making Space
An organisation providing information and services to improve the long term welfare of people with mental health problems and their carers.
www.makingspace.co.uk
enquiries@makingspace.co.uk
01925 571 680
CARERS UK
www.carersuk.org
info@carersuk.org
advice@carersuk.org
020 7378 4999
Carers UK’s helpline: 0808 808 7777 (Monday to Wednesday, 10am to 4pm).
Samaritans
Parkinsons UK
Organisation providing information and support for people with Parkinson's Disease, their friends, relatives and carers.
Helpline: 0808 800 0303
www.parkinsons.org.uk
hello@parkinsons.org.uk
Royal College of Psychiatrists
This is an organisation for psychiatrists, however it also has a wide range of mental health information leaflets. These are free to access and are sometimes provided in foreign languages.
www.rcpsych.ac.uk
020 7235 2351
