Living with Schizophrenia

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 condi

tion 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.

A research team from the University of Manchester (Division of Pharmacy and Optometry) is inviting individuals with live...
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 ]

Reform of welfare benefits system in UKIn a recent article in the Economist magazine, ex Chancellor Jeremy Hunt consider...
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

New Clozapine Support Group Clozapine is a second-generation antipsychotic medicine sometimes used to treat schizophreni...
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.

Negative Symptoms of SchizophreniaNowadays doctors tend to think of schizophrenia as having different kinds of symptoms....
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

Getting your medicines has got harder. Here’s why.If there is one issue that our readers are particularly concerned abou...
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

Physician Associates Issue in Court.This month sees the controversial issue of the use of physician associates (PAs) in ...
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

UK Pharmacy Services to be Hit Hard.According to reports Living with Schizophrenia receives from its readers, many peopl...
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

Following Canada’s decision to legalise cannabis use another study, which was published recently in the Jama Network and...
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

March sees the anniversary of the birth of Vaslav Nijinsky, the great ballet dancer who some experts believe to be the g...
05/03/2025

March sees the anniversary of the birth of Vaslav Nijinsky, the great ballet dancer who some experts believe to be the greatest male dancer of all time. Despite a meteoric early career he was, during his early life, struck down by the serious mental illness that we now know of as schizophrenia and which prevented him from fulfilling his true potential.

Vaslav Nijinsky was born 12th March 1889 in St Petersburg, the son of two Polish dancers and studied dance at the Imperial Ballet School where his skills were soon evident. By the age of 18 he was already dancing with the likes of Anna Pavlova at the Maryinsky Theatre. Later he joined the Ballet Ruse, a new company formed by Russian impresario Sergei Diagelev in Paris.

By 1917 the first signs of the mental storms that were to end his career were beginning to show through and in 1919 Nijinsky was diagnosed with the newly-described condition called schizophrenia and committed to an asylum. In the absence of any effective treatments, over the next 30 years or so he was to suffer repeated episodes of his illness and was confined on a number of occasions. Despite treatment by the foremost psychiatrists of the time he never danced professionally again.
It is a tragedy that this great dancer, who many described during his short career as the eighth wonder of the world, died before the development of the new antipsychotic medicines that today enable so many people with schizophrenia to live fulfilling lives.

(Image: Jean-Pierre Dalbera on Wikimedia Commons, creative commons attribution)

Contact us on email at: info@livingwithschizophreniauk.org

February sees the anniversary of the birth of Emil Kraepelin, the German psychiatrist who was the first to classify the ...
20/02/2025

February sees the anniversary of the birth of Emil Kraepelin, the German psychiatrist who was the first to classify the mental disorder that we know today as schizophrenia.

Kraepelin studied at the universities of Leipzig and Wurzburg and at the comparatively young age of 30 was appointed to Professor of Psychiatry at the University of Tartu in Estonia. He subsequently worked at the University of Heidelberg and founded the German Institute for Psychiatric Research in Munich.

It was the biological origins of mental ill health that Kraepelin was interested in and he opposed the psychoanalytic theories which were very popular at the time and which related schizophrenia to sexual promiscuity. He also campaigned for more humane conditions in the asylum system of his day and against the imprisonment of those suffering from mental ill health which was then common in European societies.

Arguably Kraepelin’s greatest work was his classification of the psychotic disorders into just two conditions: manic depression (what is now called bipolar disorder) and what he called dementia praecox (now called schizophrenia). This was the first time that schizophrenia had been identified as a defined mental health condition.

In fact, we now know that Kraepelin got one important feature of dementia praecox wrong. He believed that dementia praecox followed a progressively worsening course over the patient’s life. We now know differently. In fact, schizophrenia as dementia praecox is now known, although a severe, life changing and often life-threatening illness, usually follows an improving course and about 85% of patients will experience an improvement in their condition during their life.

Emil Kraepelin died in his native Germany in 1926.

(Image: By unknown author from Wikimedia Commons.)
Contact us on email at: info@livingwithschizophreniauk.org

In January, the world commemorated Holocaust Memorial Day and, at this time of year, as well as remembering all those wh...
06/02/2025

In January, the world commemorated Holocaust Memorial Day and, at this time of year, as well as remembering all those who died in those dark days of the Third Reich perhaps we should also remember those thousands of people who were killed by the N**i regime simply because they suffered from schizophrenia.

The euthanasia system in Germany during the 1930s and 1940s involved people diagnosed with schizophrenia being assessed by three state-approved doctors and if two agreed the person was sent to be killed. Initially this was carried out by means of lethal injection but later gas chambers were introduced.

The whole programme was overseen by an organisation which went under the amazingly euphemistic title of the Charitable Foundation for Curative and Institutional Care.

This practice was widely known about in Germany at the time and attracted considerable opposition particularly from religious leaders both Roman Catholic and protestant. In 1941 the Roman Catholic prelate of Germany, Archbishop Galen, condemned the euthanasia programme publicly in a text that was read out in every Catholic church in Germany. As a result, the N**is suspended the euthanasia programme. However, the respite was only temporary and six months later the programme was reinstated with renewed vigour ultimately claiming the lives of over a quarter of a million people with disabilities and mental ill health.

(Image: US Government, in the public domain)
Contact us on email at: info@livingwithschizophreniauk.org.

Address

Morden

Alerts

Be the first to know and let us send you an email when Living with Schizophrenia posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to Living with Schizophrenia:

Share