Living with Schizophrenia

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Living with Schizophrenia

Schizophrenia is a complex and serious mental health condition which affects men and women from all walks of life and social backgrounds.

It is caused by physical and chemical changes within the brain. In the UK at the moment almost a quarter of a million people are being treated for this condition by the NHS. It is usually life changing and can often be life threatening. Although the condition is widely misunderstood, particularly by the popular media, modern treatments are highly effective and most people who suffer from the condition will make a substantial recovery although it may take some time. Founded in 2013, Living with Schizophrenia is a mental health project based in the South West of England which provides a platform for people living with schizophrenia in the broader sense including sufferers as well as carers and relatives. Our aim is to provide hard evidence-based information about this often cruel and enigmatic condition about which there is often so much mythology.

15/01/2026

A recent study from Japan has confirmed that people suffering with schizophrenia are at a much-increased risk of suffering with cardiovascular diseases (CVD) such as heart problems or stroke. The new research, which featured in an article by Pauline Anderson on the Medscape platform, studied over four million patient’s records in Japan. The report recommends that health care providers build routine screening for CVD into their health care practice for patients with schizophrenia.

In the UK the main provider of health care services is the government-run National Health Service. But standards of health care practice are set by an organisation called the National Institute for Health and Care Excellence (NICE). Current NICE guidance is that people with a diagnosis of schizophrenia or psychotic illness should be offered a comprehensive physical health screen at least annually to monitor for conditions like CVD, diabetes and obesity and in practice this is usually provided by either the patient’s own GP (family doctor) practice or directly by the Community Mental Health Team.

Where annual physical health screening cannot be obtained from the local NHS organisation then it can be accessed through one of the large national private health care providers such as the Nuffield Hospital or BUPA. Costs of these services will need to be picked up by the patient and range from £259 up to £900 depending on the type of screening chosen. If the cost is prohibitive then patients can try applying for Personal Independence Payment which is a state benefit available to people with long-term health conditions who need help with their health care arrangements.

Contact us on email at: info@livingwithschizophreniauk.org

18/12/2025

Finding a job: Why work?

Work is a difficult issue for many people living with schizophrenia in the UK. Of course, for people whose symptoms are too severe, work may not be an option but others will, over time, find that they have made a substantial recovery from their symptoms and are now able to function quite well. At this point they may well begin to think about getting into work.

So, what are the benefits of work for people with schizophrenia? For those who are able to work there are a number of benefits. Here are a few:

1. Work provides financial independence and frees you from the constraints of the state benefits system.

2. Work is one of the main ways in which people interact with the society they live in. We all need to feel that we are doing something useful to contribute to our society and for most people work is an important means of making their own personal contribution.

3. Work improves your self-esteem. All of us need to feel good about ourselves and having a high self-esteem has been shown to reduce the frequency of relapses in schizophrenia.

4. Work provides social contact and enables you to make new friends.

5. Work enables you to learn new skills. Human beings by nature enjoy learning new skills especially when we turn out to be good at them. Learning a new skill will give you a real sense of achievement and another entry on your CV.

6. By being given responsibility in a job you will feel more valued.

7. Work gives you a reason to get up in the morning. For most people early morning is not their best time. We all need a reason to get up and something worthwhile to do with the day. Work provides you with the motivation to get up early and have a full and productive day.

8. Work gives you a purpose in life. People suffering with psychosis score very poorly in tests designed to assess their purpose-in-life. Working helps to overcome this.

For many people living with schizophrenia working has many benefits and it is important that we are all aware of the improvements to our condition that working brings.

Contact us on email at: info@livingwithschizophreniauk.org

08/12/2025

Finding a job: What kind of work can you do?

After you have experienced a period of schizophrenia, particularly a prolonged one, it is often difficult to get into work. One of the biggest hurdles facing people in this position is knowing where to start. Many people who have suffered from schizophrenia have little or no experience of work and do not know what sort of work they can do. Answering the question “What sort of work could I do?” is the starting point on your journey back into the mainstream.

For people who have worked before it is not such a huge issue as they have a better perception of their strengths and skills in the workplace. However, it may be that you don’t feel able to go back to your old job or perhaps you have never worked. In both cases it may be really difficult to know what sort of work you could manage or better still, work that you could do really well at.

In general people who have worked before their schizophrenic illness began will find it easier to find a job and will find it easier to cope with work than those who have never worked.

You may not be able to develop a clear idea of what sort of job best suits you until you have spent some time job-searching or even tried some work experience but it is a good idea to have some ideas before you begin your job-search and this involves taking a long hard look at your personal qualities. There are a couple of questions that you need to answer before starting job searching:

1. What are your personal qualities?
2. How will your schizophrenia affect you at work?
3. What previous work experience and qualifications do you have?

It may also be prudent to ask if there are any external factors that will affect you. For instance, how far will you be able to travel to work or do you have any family commitments such as child care that will affect the picture?

Getting into work after an episode of schizophrenia is not impossible but it can entail some difficult challenges and it is vital to plan and prepare your job search in great detail.

Contact us on email at: info@livingwithschizophreniauk.org

20/11/2025

Schizophrenia and Debt

Debt is an unfortunate fact of life for many people living with schizophrenia. An episode of schizophrenia can make it very difficult if not impossible to manage your finances well. In fact in a recent survey by the Money Saving Expert website it was found that around 36% of people with mental health issues have severe or crisis debts compared to around 6% of the general population. This finding is important to people with schizophrenia because it shows us how vulnerable we are to debt problems if we let them get out of hand and also that it is possible to live a prudent lifestyle in which debt need not be the dominant feature that sadly it is for many.

When you are well it is vital to run your affairs well to avoid a legacy of debt and a poor credit record that may take years to overcome. In addition, debt is a major source of stress which needs to be avoided if you are to stay well in the future. It is however one that, with canny financial management, you can avoid.

If you have problem debts it is often helpful to get in touch with one of the non-profit debt advice agencies who can help you. Debt advice is a complex subject. We therefore recommend that you get advice from one of the specialist debt advice services such as Step Change or Citizens Advice and make enquiries with your local library about help available in your area:

No matter how bad your debt problems there is usually a way through them and you will come out the other side and want to make a fresh start. Our information sheet on staying out of debt (https://livingwithschizophreniauk.org/information-sheets/staying-out-of-debt/) has a lot of information about managing your finances prudently and in a way that won’t risk getting into debt again in the future.

There is more information about managing debt in our information sheet at https://livingwithschizophreniauk.org/information-sheets/dealing-with-existing-debts/.

Contact us on email at: info@livingwithschizophreniauk.org

04/11/2025

Mental Ill Health and Managing Your Money

Many people living with schizophrenia find it hard to run their finances successfully and sometimes end up in debt. Here are a few tips on how to manage your money better.

Learn how to budget and set aside a regular time each week to check your bank balance, pay outstanding bills and budget your spending for the following week.

Try to preserve your credit rating as, without a good credit score, you will not have access to the lowest cost banking facilities and credit will be more difficult to obtain and will inevitably cost more. Check your credit record at least once a year by requesting it from one of the credit reference agencies such as Equifax (https://www.equifax.co.uk/). This usually only costs a few pounds.

When budgeting try to keep a minimum balance of at least £100 in your bank account as a margin of safety. This may take a little practice but is achievable over time. Get used to treating that money as dead money. It will help prevent you from going overdrawn and attracting charges from the bank for unauthorised overdrafts so will pay for itself in the end.

Don’t have large credit limits on your credit cards. Keep your credit limits to just a bit more than you normally spend each month. There is no point in having excessive credit limits: they can lead to debt problems and will affect your credit rating.

Prioritise your spending giving top priority to any debts that threaten your liberty such as court fines and then next to bills associated with your home such as rent or mortgage, service charges and Council Tax. Next, come your work expenses such as travelling to work, meals etc. Then basic living costs such as electricity, gas, ‘phone, water and food. Make sure that you cover all of these expenses before spending on anything else.

It is a very good idea to keep some money for a rainy day. Save into a separate account on a regular basis so that you have a reserve of money to help meet any unexpected large bills.

Managing your finances is a vital skill that people living with schizophrenia need and sometimes lack. But like so many aspects of daily living, good financial management can be learnt with a bit of research and time.

Contact us on email at: info@livingwithschizophreniauk.org

15/10/2025

In the United Kingdom today treatment for schizophrenia focuses on medication in conjunction with talking therapies as being the principal route out of psychosis. However, for people living with schizophrenia, whilst psychosis remains a huge threat to their wellbeing, physical illnesses like cancers, heart disease, and diabetes are also now known to be a major cause of ill health and early death. Getting more exercise can help with this in a number of ways.

Clearly more physical exercise can help to combat the problem of weight gain which often results from a sedentary lifestyle and the side effects of some medicines but what is less well understood is that exercise in itself can help to reduce physical health problems like heart disease and diabetes even if you don’t manage to get your weight down at the same time.

But in addition to the benefits of exercise for physical health there is now some evidence, albeit limited, that exercise may have benefits for mental health symptoms as well. There have been a number of research studies both in the US and here in the United Kingdom that have suggested that exercise can help to improve the negative symptoms of schizophrenia such as apathy, lethargy and social withdrawal and the cognitive symptoms such as poor memory and thinking skills although at the moment the evidence for this is somewhat limited and more research is required.

It is vital that people with schizophrenia and their relatives are aware of the need to treat the whole person and getting more exercise can be an important part of a holistic wellness strategy that improves both body and mind.

Contact us on email at: info@livingwithschizophreniauk.org

01/10/2025

October sees the anniversary of the award of the Nobel prize to the US mathematician John Nash.

John Nash was one of the greatest thinkers in mathematics of the 20th Century. And, thanks to his biography: A Beautiful Mind, and the award-winning film of the same name he was also one of the best-known people with schizophrenia of that period.

Nash studied at Princeton University, USA where he was to do most of his pioneering work in mathematics. It was here at Princeton that Nash was to win his doctorate with his work on non-cooperative games, work which was later to win him the Nobel Memorial Prize. Later, around 1958, while teaching at Massachusetts Institute of Technology the first signs of Nash’s illness were to become apparent.

During his life Nash was the recipient of many other awards for his work in mathematics including the prestigious John Von Neumann Theory Prize in mathematics but perhaps he will be best remembered for the Nobel Memorial Prize in Economic Sciences which he was awarded in 1994.

If Nash’s life was one full of surprises the manner of his death came as a great shock to all. On 23rd May 2015, following a visit to Norway where he was awarded the Abel Prize, Nash and his wife Alicia were killed when the taxi they were travelling in hit a crash barrier. Their deaths came as an enormous shock equally to all those working in the field of mental health as to those in academia. John Forbes Nash Junior was 86 at the time of his death.

Stories such as those of John Nash show us that, although life with schizophrenia can never be easy, it may be possible to win, in the end, a kind of victory. To achieve a life story; a narrative, that speaks of hope and achievement rather than of despair.

Contact us on email at: info@livingwithschizophreniauk.org

20/08/2025

About 70-80% of people with schizophrenia who take antipsychotic medication will experience an improvement in their positive symptoms; the delusions and hallucinations. This is about the same degree of effectiveness that antibiotics like penicillin have in treating infections such as pneumonia. However, there is a wide range of antipsychotics available to the doctors and some medicines will work better for some people than for others. In some cases antipsychotic medication can result in hallucinations and delusions disappearing altogether.

Furthermore, the beneficial humanitarian effect of the antipsychotic medicines should not be underestimated. Before the introduction of these medicines in the UK about 70% of people with a diagnosis of schizophrenia were continuously confined in mental hospitals often for years at a time: today it is only about five percent and the average length of stay in hospital is now measured in months.

It is often said that people with schizophrenia are not very good at taking their medicines: is that true? It is simply not the case that people with mental health conditions are not very good at taking their medication. Studies have shown that compliance with medication is no worse in mental health conditions like schizophrenia than it is in long term physical health conditions such as asthma or high blood pressure.

Antipsychotic medicines remain the mainstay of treatment for schizophrenia in the UK’s National Health Service and with very good reason. With diligent management by the mental health teams, antipsychotics work for most people suffering from what continues to be a very challenging and enigmatic condition.

Contact us on email at: info@livingwithschizophreniauk.org

06/08/2025

Recent reports coming out of Canada and the US in both the mainstream press and the academic literature have strongly indicated that people with schizophrenia are at an increased risk of death from heat-related illness during heat waves and other periods of excessive hot weather. And, with summer now upon us, people living with schizophrenia should be aware of this risk.

A study published on the Geo Health platform in 2023 found that, during the heat wave in British Columbia, Canada in 2021, people with schizophrenia were at much higher risk of death than at other times of more normal temperatures. According to the journal, Science, “overall more than 8% of those who died during the heat wave had a history of schizophrenia: up from 2.7% in the same week during a typical year”.

Why this should be so is complex: there are a number of factors. Schizophrenia can affect the part of the brain that regulates body temperature and some antipsychotic medicines can affect the way that the body regulates its temperature as well. In addition, schizophrenia often causes a condition called anosognosia which reduces the person’s awareness of their ill health. Conditions like diabetes and alcohol use, which often occur alongside schizophrenia, can also contribute to the risk from heat-related illness and social isolation and homelessness can make it more difficult for people with heat - related illness to get timely help.

Greater awareness of this risk is needed, particularly by community mental health teams and especially community psychiatric nurses who can check on patients with schizophrenia during periods of excessive hot weather and ensure that they have taken precautions. Carers and relatives can also play a part and should know how to cope with hot weather and what to do in case of heat-related illness. Sufferers of schizophrenia themselves should also be more aware of this risk and look at how they can take some simple precautions when the weather is too hot.

There is good advice on the Gov.UK website at https://www.gov.uk/government/publications/heatwave-plan-for-england/beat-the-heat-staying-safe-in-hot-weather
on how to cope with periods of extreme hot weather and the National Health Service (NHS) and Red Cross websites cover what to do in case of a heat-related illness. (https://www.nhs.uk/conditions/heat-exhaustion-heatstroke/ )
(https://www.redcross.org.uk/first-aid/learn-first-aid/heat-exhaustion)

Contact us on email at: info@livingwithschizophreniauk.org

23/07/2025

A research team from the University of Manchester (Division of Pharmacy and Optometry) is inviting individuals with lived experience of mental illness, and their carers, to take part in a national study. They are particularly interested in hearing from people who have received care for their medicines from pharmacist prescribers in community settings (e.g. those who prescribed medication, changed dosages, or diagnosed a condition without a doctor’s approval).

This study aims to explore how patients and carers experience and perceive the care provided by pharmacist prescribers. Your insight will help the team understand how this role supports people with mental illness and how care might be improved in the future.

Participation involves a one-off interview (via Zoom, Microsoft Teams, or phone), lasting about 45–60 minutes.

The team are looking for:
▪️Adults (18+) with mental illness or unpaid carers supporting someone with mental illness;

UK residents;
▪️Those fluent in English;
▪️People who have received care from a pharmacist prescriber in a community-based service (GPs, community pharmacy, specialised mental health services);
▪️People with access to a device with internet/microphone if joining online.

To learn more or ask questions, please contact: [bashayr.alsaeed@postgrad.manchester.ac.uk ]

07/07/2025

Reform of welfare benefits system in UK

In a recent article in the Economist magazine, ex Chancellor Jeremy Hunt considered the problems of the cost of the UK’s welfare benefits system and argues that reform of the system must happen in the near future. If so this is sure to have implications for people living with schizophrenia.

Jeremy Hunt is a Conservative member of parliament who served in the cabinet in the last Conservative government as health minister and was Chancellor of the Exchequer (finance minister) from 2022 to 2024 so he knows a thing or two about government spending.

Hunt argues that ever increasing costs of public sector enterprises like the National Health Service (NHS) are requiring more and more tax increases. Increases in public spending can only be funded by a growing economy but since the 2008 world economic crash, economic growth in the UK has remained stubbornly low.

The government is already under pressure to increase spending in areas like defence, policing and the NHS and so it is looking increasingly likely that reform of the growing welfare benefits system will be high on the Labour government’s agenda. Spending on welfare benefits, already high in relation to other countries, has spiked since the 2019 Covid pandemic and it is still rising. Mental health accounts for about half the increases. If the government could get the welfare benefits bill down to pre2019 levels then they would save about £49 billion a year.

But it is not just a question of money. Since the pandemic there has been a huge growth in the numbers of people presenting to doctors with moderate conditions like anxiety. Reports reaching Living with Schizophrenia suggest that people with major mental health diagnoses such as schizophrenia are finding it difficult to access help from the NHS because of these additional pressures on the mental health teams. Hunt argues that signing people with moderate conditions off work may do more harm than good by removing those people from their supportive and social networks. He says, “Instead of signing people with mental illness off work we should direct them for treatment”. That aspiration may be sound for patients with moderate conditions but will not work for a schizophrenia patient in the throws of their first psychotic breakdown.

If Jeremy Hunt is right then reform of the welfare benefits system in the UK is more or less inevitable and people with schizophrenia are sure to be affected. People living with schizophrenia, both as sufferers and their relatives, must be ready to speak up for our right to access high quality and appropriate medical care and for adequate financial support for all those unable to work.

Contact us on email at: info@livingwithschizophreniauk.org

25/06/2025

New Clozapine Support Group

Clozapine is a second-generation antipsychotic medicine sometimes used to treat schizophrenia. It is often effective where other antipsychotics have been tried and failed. Many people (professionals and sufferers included) consider clozapine to be the gold standard for treatment of resistant schizophrenia.

Now a new clozapine support group for people living with schizophrenia has been formed in the UK by parents of sufferers. The new group wants to improve awareness about the effectiveness of clozapine and to campaign for its more effective use within the UK mental health services.

They tell us their main aims are:
o Clozapine should be offered to everyone who does not respond to a trial of two standard antipsychotics.
o Clozapine should be prescribed in a manner which maximises its effectiveness and tolerability to achieve a ‘meaningful recovery’.
o Clozapine should not be stopped unnecessarily.
o Monitoring requirements need to be amended to help more people start and continue with clozapine.

As well as creating a website and Facebook group, the support group have also held meetings with UK government agencies and manufacturers of clozapine. The group’s page already has some 300 members and they have collected over 1500 signatures of support for their campaign.

The new group argues that mental health teams do not receive enough training and guidance to prescribe clozapine correctly and that training, information and guidelines are outdated and not adequate for clozapine use; they need to be improved and updated. There should be one updated guide on the use of clozapine for all National Health Service (NHS) trusts to follow. Training in the use of clozapine must be made mandatory for mental health staff and there should be in-service training for mental health workers on a regular basis to keep up to date with changes in thinking and prescribing practice.

The group commented to LWS: “In the US, the Food and Drug Administration’s recent meeting regarding the re-evaluation of clozapine risk evaluation and mitigation strategies (REMS) resulted in a 14 to one vote to end the clozapine REMS, which was implemented in February this year. The European Medicines Agency (EMA) also recognises that maintaining lifelong monthly blood monitoring after the first year of treatment contributes to unjustified discontinuation of clozapine and that it is time for the revision and updating of the EMA's blood monitoring rules”.

Karen and Melanie, co-founders of the new group, said: “There needs to be investment in educating physicians on the timely, safe, and effective use of clozapine along with diligent patient care and monitoring. We need to ensure that people with treatment-resistant schizophrenia (TRS) have access to life-saving treatment. It is inhumane to deny a cancer patient chemotherapy, a diabetes patient insulin, and patients with TRS clozapine.”

The group can be contacted by clozapinegroupuk@gmail.com.

Important note.: Living with Schizophrenia does not recommend any particular method of treating schizophrenia. Treatment plans must be carefully created by the medical professionals and by involving sufferers and family carers in the treatment process.

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LWS (UK) C. I. C. Office 9, Dalton House, 60 Windsor Avenue
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https://livingwithschizophreniauk.org/

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