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.

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.

05/06/2025

Negative Symptoms of Schizophrenia

Nowadays doctors tend to think of schizophrenia as having different kinds of symptoms. The positive symptoms include things like hallucinations such as hearing voices and delusions like paranoid thoughts whilst the negative symptoms include lack of motivation, social withdrawal and apathy. Whilst the positive symptoms tend to be more dramatic and will often prompt swift action by the mental health services the negative symptoms are more insidious in their effect but can often be just as disabling, in some cases more so, than the positive ones.

Negative Symptoms of Schizophrenia can include:
• Apathy
• Social withdrawal
• Blunted or incongruous emotional responses
• Changes in body clock
• Lack of motivation

One aspect of the development of negative symptoms, which is key and very often causes delay in getting medical help, is that schizophrenia most frequently starts in late teens and early twenties and consequently the negative symptoms can very often be mistaken for the normal turbulence of adolescence.

The first line of defence against positive symptoms is antipsychotic medicine which is at least partly effective in about 70-80% of cases. Unfortunately, we do not have such ready treatments for the negative symptoms. Although some of the newer antipsychotics and antidepressants are thought to give some relief, the evidence is not yet conclusive and certainly they do not have such a marked effect on the negative symptoms as the they do on the positive ones. A further complication is that some of the older types of antipsychotics may cause side effects that are very similar to negative symptoms such as lethargy. For this reason, it is the current practice in the UK National Health Service (NHS) to use the newer generation of atypical antipsychotics in preference to the older ones.

So, if science is not yet able to provide substantial relief from negative symptoms a greater reliance must be put by the sufferers on self-help. For this reason we have created an information sheet on the LWS website at https://bit.ly/4jaqBWK detailing simple methods that sufferers can employ to help to ease the effects of negative symptoms.

Contact us on email at: info@livingwithschizophreniauk.org

27/05/2025

Getting your medicines has got harder. Here’s why.

If there is one issue that our readers are particularly concerned about at the moment it is the state of the prescribing/dispensing system for repeat medicines in the United Kingdom today. Many of our readers have noticed a distinct deterioration in the system, that used to work very efficiently before, but which, since the covid pandemic, has suffered from many changes, few of which seem to be of any benefit to the patients.

Along with widespread closures of pharmacies and pharmacies going over to reduced opening times, our readers report problems with dates on their repeat prescriptions being changed without their knowledge, with prescription frequencies being changed without any explanation, with the wrong medicines being prescribed and with prescriptions being issued to pharmacies miles from where they are living.

As one person living with schizophrenia put it: “before Covid I used to make six visits to the pharmacy each year to collect my repeat medicines now I have to make 22 visits a year for the same medicines”.

It is becoming clear that there are systemic problems with the prescribing/dispensing system in the UK. Having easy access to the appropriate medicines is absolutely vital for people living with long-term conditions like schizophrenia. We fear that general practitioners (family doctors) and pharmacies have become less patient-focussed since the covid pandemic. A renewed commitment by both GPs and pharmacies to providing for patients needs first is desperately needed.

(Image: Shutterstock)

Contact us on email at: info@livingwithschizophreniauk.org

24/05/2025

World Schizophrenia Day

Over a hundred years has elapsed since the German psychiatrist Emil Kraepelin first described the illness that we now call schizophrenia and as today is World Schizophrenia Day perhaps it would be appropriate to reflect on how much progress we have made during that time.

Despite the strides that have been made in the development of the antipsychotic medicines that remain the mainstay of treatment within the modern NHS (National Health Service) and more recently the wider availability of the talking therapies schizophrenia often still remains neglected.

Almost a quarter of a million people are being treated for schizophrenia in the UK alone and although most will recover greatly, the prospects for many of returning to long-term employment are still very variable.

There is also a continuing problem of awareness in the mind of the public and particularly in the news media. Many people in the general public find it difficult to accept that this often complex, bizarre and enigmatic illness of the brain can and sometimes does cause disturbed behaviour. Hostility sometimes results.

Authorities continue to make cuts to mental health services in the UK and when they do so there is little by way of public debate or opposition from the news media. In particular, the inpatient beds in the Mental Health Service, so vital for those patients who are in crisis, and equally so vital in preventing tragedies have been subjected to severe cuts in recent years.

Today schizophrenia remains one of the biggest public health challenges that our society faces. Under resourced and poorly understood by our leaders and public alike. For the sake of sufferers, their families and the public at large we must better step up to this complex challenge.

Contact us on email at: info@livingwithschizophreniauk.org

23/04/2025

Physician Associates Issue in Court.

This month sees the controversial issue of the use of physician associates (PAs) in the news again with an article by Nina Massey on the Medscape platform in February. According to Massey, another legal challenge is being brought by the British Medical Association (BMA), the doctor’s professional body, against the health regulator, the General Medical Council (GMC), regarding the use of physician associates in the British health service.

We have reported on this issue before in these pages. Physician associates were first introduced in the NHS to help with doctors’ workloads and have been used for about twenty years. Typically, PAs are graduates with about two years training compared with at least six years training for a doctor. Not surprisingly the practice has led to some disquiet amongst both doctors and patient groups with concerns that the PAs are not sufficiently trained for the roles they are being asked to fulfil.

As Massey writes: “the BMA is accusing the regulator’s office of “abandoning its responsibilities to patients’ safety by blurring the lines between doctors and non-doctors”. In the public mind there is confusion about the role of PAs and a lack of transparency as PAs are not listed on publicly accessible professional registers in the same way as doctors.

Most people living with schizophrenia will sometimes have experienced difficulties with getting to see a doctor at their general practitioner (GP) surgery and often the patient may only be seen by a physician associate rather than a fully qualified doctor. It is vital that the roles of doctors and PAs do not become confused and that PAs are not used for work beyond their individual skillset.

Contact us on email at: info@livingwithschizophreniauk.org

09/04/2025

UK Pharmacy Services to be Hit Hard.

According to reports Living with Schizophrenia receives from its readers, many people with schizophrenia in the UK have noticed a significant deterioration in the quality of service provided by pharmacies particularly due to changes made in dispensing practices since the Covid pandemic.

Amongst the adverse changes that we have seen, many pharmacies have already cut back on opening times since the Covid pandemic with fewer pharmacies now opening on Saturday mornings or outside of office hours on weekdays. This particularly hits people with schizophrenia who are in work as they may now have to take time off work just to collect their repeat medicines.

Now Storm Newton, writing on the Medscape platform recently, has reported that the National Pharmacy Association (NPA), a trade body representing 6000 independent pharmacies across the UK, is threatening that its members will take action like cutting opening hours still further unless its members receive more funding. The NPA blames increases in employer’s National Insurance announced in the last budget and a rise in the National Living Wage along with increases to business rates (a tax on business premises levied by local councils).

The state of the pharmacy service in the UK is of enormous concern. Reports that we at Living with Schizophrenia receive indicate that a whole range of serious issues have set in since the Covid pandemic. This is of grave concern. An efficient system for prescribing and dispensing medicines is a key factor in the high quality psychiatric care that all people living with schizophrenia need and deserve.

Contact us on email at: info@livingwithschizophreniauk.org

26/03/2025

Following Canada’s decision to legalise cannabis use another study, which was published recently in the Jama Network and reviewed on the Medscape platform by Megan Brooks in February, has shown that the change in the laws on cannabis use has led to an increase in the number of diagnoses of schizophrenia in the country. In addition, there has also been an increase in cases of cannabis use disorder.

The study, carried out in Ottawa, covered a period of 16 years and looked at the period before liberalisation of cannabis use, then a period when cannabis use was liberalised to allow medical use and then the period after full legalisation which included non-medical use. A total of over 13 million people were studied. It was found that cases of schizophrenia associated with cannabis use disorder almost tripled during this time.

At Living with Schizophrenia our mailbag often contains harrowing stories from carers and relatives of schizophrenia sufferers who have seen their loved one deteriorate after using cannabis. This study should be a warning to the governments of any other jurisdictions that are considering legalisation of cannabis: legalising cannabis leads to more cases of schizophrenia in society.

Young people need to be made more aware of the risks that they run by using cannabis. It is also vital that we push back against the claims of harmlessness put out by the increasingly powerful cannabis grower’s industry.

(Image: Luisma Tapia on Shuttterstock)

Contact us on email at: info@livingwithschizophreniauk.org

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