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 medicine indicated 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.

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.

A list of services to help sufferers of schizophrenia is provided in the Support services section.

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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 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.

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FAQs

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.

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.

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.

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 their treatment team
  • Get referred to other treatment teams if necessary

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.

Contact your doctor or nurse, and they will give you the details you need to know.

Drowsiness can occur in more than 10% of patients taking clozapine, especially at the beginning of treatment. To minimise the risk, it is necessary that your doctor increases your dose gradually. Always take clozapine exactly as your doctor has told you.

You should not drive or operate machines while you have these symptoms.

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 constipation or are experiencing a change in your bowel movements.

Your doctor will tell you how long you need to keep taking clozapine and discuss any changes in your treatment schedule.

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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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

We are the leading expert charity for people with serious conditions like schizophrenia and bipolar disorder. We offer practical help guided by what works.

Every year, our diverse range of information and support helps tens of thousands of people get through crises, live independently and feel that they do not have to face mental illness alone.

Telephone number: 0121 522 7007
Website: rethink.org
Email: info@rethink.org

Change Mental Health

Change Mental Health is a national mental health charity delivering non-clinical, person-centred support to people affected by mental illness in communities across the country (Scotland).

Our vision is a future where no one needs to face mental illness alone. Our mission is to provide transformational support for people, ensuring that everyone has access to the support they need, when they need it, and in a way which works best for them.

Telephone number: 0808 801 0515
Website: changemh.org
Email: advice@changemh.org

SANE

SANE’s vision is to help create a world in which there is no shame or blame surrounding mental illness, which it believes needs to be recognised as one of the greatest challenges facing society and must be treated with the same seriousness as physical health conditions.

Telephone number: 020 3805 1790
Website: sane.org.uk
Email: info@sane.org.uk

MIND

Even though 1 in 4 people have mental health problems, most of us don’t get the help we need. This has to change. We’re Mind. We’re here to fight for mental health. For support, for respect, for you.

Telephone number: 0300 123 3393 or 0300 102 1234
Website: mind.org.uk


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Making Space

Our mental health services provide tailor-made support for people living with a range of mental health conditions, whether mild to moderate, complex, challenging or long-term.

We will get to know you and will take the time to understand your goals and personal circumstances. Working together, and where appropriate with family and carers, we will use innovative tools and treatments to develop a package of care and support that is tailored to each individual’s needs and choices.

Website: makingspace.co.uk/mental-health/mental-health-services

Parkinsons UK

We're the charity that’s here to support every Parkinson’s journey, every step of the way.

We don’t wait for change, we make it happen. Campaigning for better health and care. Funding research into groundbreaking new treatments. Running life-changing support services.

We’re a powerful community united by one mission: improving life with Parkinson’s.

Telephone number: 0808 800 0303
Website: parkinsons.org.uk
Email: 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.

Telephone number: 0207 235 2351
Website: rcpsych.ac.uk