Mental health cuts cost the NHS millions, charity says

Rethink said cognitive behavioural therapy could help cut long-term costs of care
Cuts to mental health care are costing the NHS millions of pounds long-term, a report has said.

More cases of psychosis and schizophrenia now end up in hospital rather than being treated in the community, it said.

Rethink Mental Illness published the report with the London School of Economics.

Cuts mean fewer people have access to early intervention treatment, such as talking therapy, Rethink said.

It said the NHS could save more than £50m a year by shifting its focus.

Britain’s recession in 2008 led to cuts across the NHS, as the government struggled to deal with ballooning deficits.

The report said it costs on average £13 a day to support someone with psychosis or schizophrenia in the community.

It said this compared with the £350 average daily cost of keeping a mental health patient in hospital.

‘Shift of resources’

Meanwhile, 54% of the psychosis budget was being spent on inpatient care rather than on preventive community services, the report found.

Family therapy, where families of people with psychosis and schizophrenia are supported, cognitive behavioural therapy, and peer support could help cut long-term costs of care, it said.

Health Minister Norman Lamb said early access to treatment in the community was “often the best option” for people with psychosis and schizophrenia.

He said: “Not only do they benefit from being in familiar surroundings among loved ones but they are less likely to need costly hospital stays.”

Mr Lamb called for a “shift of resources” to preventive care and said that the government had given NHS England a “clear objective” to put mental and physical health on a par.

Mental health trust budgets for 2013-14 have fallen by 2.3% from 2011-12.

The cuts have meant mental health trusts have been asked to save almost 20% more from next year’s budgets than hospitals.

Budgets for community mental health teams, which give continuing support to patients to prevent their health deteriorating to crisis point,reached a plateau for 2011-12 but referrals rose by 13%.

‘Parity of esteem’

The report also predicted more than £50m a year could be saved if early detection services could be strengthened.

It said the NHS saved £989 every time people were treated with cognitive behavioural therapy instead of going to hospital.

Rethink said mental health accounted for 23% of the disease burden in England but received only 13% of the health budget.

Dr Martin McShane, national director for long-term conditions at NHS England, said the report was “very helpful” and was supportive of what the organisation wanted to achieve.

He said: “We recognise we must work to ensure that in everything we do mental health has parity of esteem with physical health.

“We have significantly invested in improving access to psychological therapies and dementia care.”

Via Bridget via http://www.bbc.co.uk/news/health-26957435


Mike has been found!

Mike has been found


Silent Cinema launches at the ORTUS

Come and join us at the ORTUS for our inaugural Silent Cinema event on Tuesday 28th January 2014 at 6pm. This will be the first in a series which will run on the last Tuesday of every month, when we will show a variety of films, all with underlying mental health themes.

The first film in the series will be “The Soloist”; a 2009 American drama film directed by Joe Wright, and starring Jamie Foxx and Robert Downey, Jr. The screenplay by Susannah Grant is based on the book, The Soloist by Steve Lopez. The film is based on the true story of Nathaniel Ayers, a musician who developed schizophrenia and became homeless.

Tickets:

Tickets are £5 and cover the cost of a hot drink and a cake from the cafe at the ORTUS. Just don’t forget your headphones!

If you don’t have your own headphones, no problem! We’re selling tickets with headphones for £9.

Spaces are limited and available on a first come first served basis, so you must pre-book. Book herehttp://www.maudsleylearning.com/events/events/silent-cinema-the-ortus-the-soloist/

Please make sure you arrive with enough time to grab your drink and cake from the cafe! The film begins at 6pm and the cafe will close at this time. 


“People still think that it’s shameful if they have a mental illness. They think it shows personal weakness. They think it shows a failing.”

How to end the stigma and talk about mental health: http://on.ted.com/bwg5


Schizophrenia Awareness Week 2013

Schizophrenia Awareness Week is 11th – 17 November 2013.

Matthew has done video and audio blogs  about Schizophrenia; its symptoms, what you can do to raise awareness of it this week and what Rethink and other organisations are doing to help with this illness.

The video is at:

The audio at:

The transcript of these blogs can be downloaded from:


HIP HOP PSYCH Event 21st November

HIP HOP PSYCH

21st November 2013, 7pm – 9pm. ORTUS learning & events centre, 82-96 Grove Lane, Denmark Hill, London, SE5 8SN

Co-Founded by Dr Akeem Sule & Dr Becky Inkster

“Demystifying mental illness through authentic beats and lyrics”

HHP Screens

Hip-hop culture is a powerful vehicle for raising awareness about mental health. It is rich with references to psychiatric illnesses that have not been explored, dissected and documented until now. HIP HOP PSYCH, co-founded by Dr Akeem Sule & Dr Becky Inkster, is the interface that links hip-hop with mental health.  Their medical credibility and authentic passion for hip-hop enables them to bridge this gap. They understand the culture, speak the language and want to share their knowledge in order to cultivate awareness and remove stigma surrounding mental health and hip-hop.

Although the lyrics of hip hop music are often associated with swearing, rapping about money and the exploitation of women, there are also rappers whose unfiltered narration goes beyond this by describing the harsh realities of their world and the coping mechanisms employed by some young people.  The music can be rich with references, for example, to addiction, psychosis, bipolar disorder and the effects of urbanicity, poor nutrition and destructive parental influences relating to childhood maltreatment in the absence of positive role models.  

For this event, HIP HOP PSYCH Co-Founders Dr Akeem Sule & Dr Becky Inkster will be focusing on dissecting and analysing a range of hip hop lyrics from different artists – such as Eminem, Tupac, Kendrick Lamar and J Cole – in order to demystify mental health.  In doing this they seek to disarm the boundaries between psychiatry, the humanities and hip-hop culture.  Their approach enables them to gain a deeper awareness into gang culture and allows them to get closer to the reality of the daily struggles and risk factors which people with mental health problems face.

The event will also feature a special performance by Key Changes. Key Changes provides music engagement and recovery services for young people and adults experiencing severe mental illnesses including psychosis, schizophrenia, bi polar and personality disorders. Their innovative approach draws on clinical therapeutic techniques and uses culturally relevant music activities and genres.

Twitter: @hiphopsych / Email: hiphopsych@gmail.com

Price: £15 per person. Booking is essential as spaces are limited. CLICK HERE to buy your tickets.

IMPORTANT INFORMATION: You must be at least 16 to attend this event.


South London and Maudsley on film: humanity and humour

Looking at a newspaper story about the murder of drummer Lee Rigby earlier in the year, Lloyd, who has a diagnosis of paranoid schizophrenia, said that hearing about schizophrenics in the news made him feel worse. He worried that he didn’t know his own mind and wondered if he himself could turn into a murderer too, since that’s what he read in the papers. Dealing with the symptoms of psychosis can be difficult enough in itself. Having to deal with society’s perceptions that people with your diagnosis are violent and unpredictable adds another level of difficulty.

Earlier today, I attended an advance screening of Channel 4′s new series on the realities of modern mental health care at the South London and Maudsley (SLaM) mental health trust.  In the screening room in the basement of Channel 4′s headquarters in Horseferry Road, a select audience sat in red plush seats watching one of four programmes in the series on modern mental health care. The series is entitled Bedlam and the name choice has caused controversy. To an extent it can be argued that, when a respected NHS trust calls a television series after a medieval asylum, it dilutes the strength of the case against Thorpe Park’s “mental patient scary fun” horror maze Asylum. But what of the series itself?

The episode previewed profiled the work of Speedwell community mental health team (CMHT) in Deptford, south London, over the course of a year. The four-part series, which starts at 9pm this Thursday, also covers the Anxiety Disorders Residential Unit, Lambeth Triage (the front line for emergency cases) and the older adults unit (over 65s).

Without giving too much away, we followed patients Tamara, Lloyd and Rosemary, all of whom experience psychosis. We saw them trying to cope with periods of illness, voices, delusional beliefs about bed bugs and with children being taken into foster care.  We saw them using prescription drugs as well as speed and alcohol to help manage their troubling symptoms. We saw them at times chaotic and disturbed, and at other times funny and happy.

We saw social worker Jim Thurkle doing his best to hunt down and help patients, a third of whom refuse to engage with him. We saw Dr Tom Werner doing his best to confirm the stereotype of the psychiatrist in the bow tie. We saw the fine line between enabling someone to live the life they choose and intervening in the interests of their own health and safety.

Not once did we see someone who could be considered a danger to anyone else. Not once did any of the patients present as anywhere remotely near the stereotype of the paranoid schizophrenic mad axe murderer. What we saw was patients struggling to manage their lives in difficult circumstances, and the professionals who tried to help them.

It was particularly interesting to see the work of a CMHT  which, along with GPs, carry out the bulk of psychiatric care in this country. As the booklet handed out at the advance screening says:

“The lion’s share of SLaM’s work takes place in a community setting, looking after more than 35,000 people with mental health issues. SLaM treats 8,000 psychosis patients a year; 6,000 of whom are based and treated in the community. We touch on different treatments available and see intense and moving interaction with social workers and mental health teams.”

As Pete Beard, the producer of the episode, who answered questions after the screening, said:

“We wanted to reflect the realities of this challenging work, following the actual narratives of people walking a tightrope with their mental health as it happened and the teams who act as a safety net. I feel that these realities are rarely reflected accurately in the media and as a result it is important to demystify the work performed as community teams, especially taboo subjects such as being sectioned”.

It was profoundly moving to see someone taken away from their own home, against their will, and detained with no legal authority other than the personal opinions of a social worker and doctors. No police arrest, no court process, no judge, no jury. Just a simple form signed, and you have no choice about even the simplest things like what you eat, where you sleep or what shampoo you use to wash your hair. And, on a more intrusive level, you have no right to refuse medication.

This extended scene cannot help but make you reflect on the balance of power between the state and the individual, and on what society deems to be acceptable norms of behaviour. This is especially so when you’re dealing with someone you don’t really know, as can be the case when a mental health team is called out to consider sectioning someone. Britain has a proud tradition of eccentricity, but that is not tolerated if you are deemed to be mentally ill. Simply being a nuisance to others but in no way dangerous to yourself or others can, ultimately, mean three people decide on your behalf that your quality of life will be improved by a compulsory stay in a locked psychiatric ward.

The sectioning sequence made me think about the boundaries or free will and autonomy and to what extent people’s peculiarities are tolerated. I have been on the receiving end of such a process, and it changed my life irrevocably. As Dr Baggaley said, when he’s taken part in sectionings he does wonder whether this was what he trained for. Although he sees it as difficult, he does see it as necessary.

Dr Baggaley described the person in question as a “revolving door patient” who would face repeated hospitalisations, some under section (compulsion), for the rest of their life. And yet this is someone who will – under the current welfare benefits system – also face repeated Work Capability Assessments. It is hard to see the point of such assessments in this case particularly since, as Dr Sarah Wollaston MP wrote today, WCA’s are not geared towards helping people with mental health problems find and retain employment.

One of the things which struck me in this episode was the amount of humour. Despite their difficult circumstances and troubling symptoms, the patients followed could come across as affable, amenable and warm-hearted. Ripples of laughter would regularly rumble across the audience, and not just because viewers were looking for a little light relief in what was, after all, a serious topic. As with any other fly-on-the-wall documentary, the colourful charaters in this episode were full of humour. The seriousness of the subject matter made the flashes of levity even more welcome.

Overall, this preview episode was intimate, insightful and profound. It showed human beings in all our difficulties, complexities and ambiguities. It showed the realities of trying to combat the stigma around mental illness with humanity and humour. It showed that danger and fear are the least of the concerns of the CMHT.

On a final note, I will end with a criticism that was raised by audience members with personal experience of mental health services: namely that the episode was somewhat naive and unrealistic. Audience members had received far worse experiences of mental health care, or had been able to deliver a far worse service due to cutbacks. It was acknowledged by the film makers that Speedwell CMHT had a ring-fenced budget, so had not been under the same constraints and workload other CMHT’s they’d liaised with had.

It was also highlighted that a lot of the difficulties patients needed help with were practical, and that these needs were not being met. The patients were unable to deal with these matters themselves and therefore they were stuck in difficult circumstances. Examples were the bedbugs which did actually exist in Tamara’s flat. It was not a delusional belief (though its extent may have been) and dealing with that practical problem may have lessened her delusional symptoms. This and her use of amphetamines may also have been the way she managed the immense sorrow of losing her children. Lloyd appeared to be using alcohol to numb his pain.

With a series planned over two years and filmed over twelve months, much footage will have ended up on the cutting room floor. It’s a shame, however, that the close relationship between medical help and social support, and the parts played by talking therapies and thereapeutic activities, were overlooked completely in this preview episode.

Nor was the 9% reduction in inpatient beds in the past 2 years mentioned.  Nor were the terrible cuts to community mental health services mentioned.

On the other hand, as Madeliene Long, SLaM chair said:

“Despite it affecting so many people, mental illness is still poorly understood. The stigma and discrimination that people face can make their mental health even worse and can prevent them from seeking help. So it’s really important that we do everything we can to raise awareness, challenge stereotypes and promote the facts about mental health. I’m really pleased that we have been able to work with Channel 4 and The Garden Productions on such an ambitious project which sets out to do exactly that.”

As executive producer Amy Flanagan said,

“Many of these patients had lived long lives with no history of mental illness. It could happen to our parents, to us.”

And, if it does happen to us or someone we know, programmes such as these will mean it feels a little less alien and a little more a part of everyday life.

Via http://sectioneduk.wordpress.com via Bridget


Impact of mental health service cuts

The wider implications should be heeded of the sentencing of a homeless man with paranoid schizophrenia for the stabbing to death of two Big Issue sellers (Report, 16 October). As John Bird, founder of the Big Issue, observes, the tragedy is an opportunity to reflect on the impact of cuts to mental health services. I visit mental health facilities on a weekly basis to review the detention of compulsorily detained patients. It has been increasingly apparent for months that patients are being admitted to hospitals hundreds of miles from where they live because of the lack of beds in their own locality.

This impression is now given an evidential basis by the BBC and Community Care investigations which used freedom of information requests to identify that at least 1,711 psychiatric beds have closed since April 2011, most of them in acute adult wards, older people’s wards and psychiatric intensive care units. Not only is admission to facilities far from home detrimental to the wellbeing of patients because of the disruption to their support networks, the increased complexity of setting up and monitoring their care after discharge from hospital in rare cases compromises public safety.

It is an inadequate response by the Department of Health to cite increased numbers of service users being seen in their own homes. Improvements in community care are obviously welcome, but do not obviate the need to provide appropriate hospital care for those who are acutely ill. Depositing people far from their homes is reminiscent of Hieronymus Bosch’s painting The Ship of Fools and invokes medieval attitudes towards people who are mentally unwell.

Professor emeritus Nick Gould
Department of social and policy sciences, University of Bath

Via http://www.theguardian.com via Matthew


Why the Sun is so wrong to use violence and fear to start a debate about the mental health system

There are good days and bad days in this job. Monday wasn’t a good one when I saw the Sun’s headline claiming 1200 people had been killed by ‘mental patients’ in the last ten years.

After so much improvement in the way the media reports mental illness in recent years, it felt like a huge step back to the bad old days of headlines like ‘Bonkers Bruno locked up’. In this world of sensationalist reporting, violence is the only prism through which mental illness is viewed.

This is not in any way, to downplay the terrible tragedy of a young life lost. Or indeed the urgent need to address failings in the system which so often play a part in incidents of this nature. And I’m not saying that murders involving people with mental illness should not be reported, of course they should. What I am saying is that they should be reported responsibly and in a way which does reinforce the stereotype that equates mental illness with violence.

While of course there are cases where people with mental illness commit serious acts of violence, we must keep the real risk in perspective. Ninety-five per cent of murders are committed by people who do not have a mental illness. In the vast majority of those 5 per cent of cases, there are other factors at play such as alcohol or drug misuse.

When the coverage of an issue is as crude and sensationalist as it was on Monday, everyone with a mental health diagnosis suffers.  It has been moving to see the reaction from people with mental illness themselves. Many have taken to social media to explain how this kind of reporting compounds the social isolation which mental illness can cause.

As one mental health blogger, Ceri, put it:  “Feeling exposed, vulnerable, persecuted, threatened and fearful, thinking that everyone knows you are evil, is a common part of the paranoid symptoms I and others experience. Having it shouted in the headlines that all this is really true, that you really are dangerous to others, and everyone knows, is a sick joke.”

The Sun may argue that they are only highlighting this issue because services are failing and something needs to be done. While I agree that mental health services badly need to improve, I would argue that coverage of this kind is not the place to start the argument.

We need to start with the enormous human suffering which can be caused by mental illness when decent treatment isn’t available. We should be talking about how people with serious mental illness are being let down by the NHS and social care system. We should be talking about the many thousands of lives lost every year to suicide.

I’d like to see the Sun run a headline highlighting the 30,000 people with mental health problems who are dying needlessly every year from preventable physical health problems. Or a front page splash about the excellent reportproduced this week by Victim Support and Mind which shows that people with mental illness are three times more likely to be the victims of crime.

Last year our Schizophrenia Commission highlighted the way in which we are systematically letting down the 300,000 people in England who have schizophrenia or psychosis and their families.

But it doesn’t have to be that way.  We can do so much more to improve the lives of people with severe mental illness.  Schizophrenia and other conditions do not need to be diagnoses of despair and fear.

A constant focus on a small number of cases involving violence reinforce fear and despair. Instead we need to see a wider debate about the individual and societal costs of mental illness and what can be done about it. A debate prompted by compassion, not fear.

Via http://www.rethink.org


The Brainless Brothers: An audio blog by Matthew McKenzie

Matthew attended a talk at the Bethlem Royal Hospital on Saturday 3rd August 2013.

It was a free talk on Cibber’s statues of ‘Raving’ and ‘Melancholy Madness’, and this summer is also the last chance to see the statues before they go out on loan.

They are going to journey across the Channel on long-term loan in September, returning for the opening of the new Museum of the Mind in the autumn.

Matthew’s blog is great to listen to – you almost feel like you are there seeing the statues for yourself. Worth a listen!


Would you like to take part in a group discussion about genetic testing and clozapine? Final Call

My name is Ben Spencer and I am a psychiatry registrar at the Institute of Psychiatry working on a research project that is looking into people’s views of genetic testing in clozapine.

Schizophrenia is a common illness that can affect how people tolerate stress, and their experience of the world.  Some people who have schizophrenia do not get better on standard medication, and treatment with clozapine is offered.  Clozapine can affect the immune system and so people who take it have to have regular blood tests, and sometimes get side effects.

At the moment, researchers are looking into whether it might be possible to use a genetic test to predict if people with schizophrenia would benefit from clozapine, or would get side effects.  This research may mean that people would have to have blood tests less often when they are treated with clozapine.

No one has looked into people’s views on this, and I am keen to find out what people think.  To do this I have written a questionnaire about it to give to people.  I need to find out though if it’s asking the questions that service users think are important.

I am looking for people who have experience of mental health services, and who would like to look at a questionnaire we have written to find out about people’s views and attend a focus group discussion on it.  Ideally if you have knowledge or experience of clozapine or psychosis.

If you wanted to take part I would send you an information sheet about the study, and a copy of the questionnaire for you to complete in your own time.  I would also send you a feedback form so you can write about your experiences of it.

Then I would invite you to come along to a focus group to discuss with other similar people you thoughts on the questionnaire itself (is it too long, short, too simple).  Also at this group we would discuss the research itself and the issues or questions you think we should be asking.

You would be given your travel costs (up to a maximum of £10) to attend the focus group, and a £10 Marks and Spencer’s gift voucher for your involvement.

Please note the focus group session will take place on Thursday  25/07/2013 in Brixton.

Please get in touch if you are interested in being involved in this project by emailing : clozapineandgenes@gmail.com  with your name, phone number, and address to post the study information to.

The deadline to respond by is Wednesday 10/07/2013.


SLaM’s mother and baby unit praised

The specialist Mother and Baby Unit at the Bethlem Royal Hospital has been recognised as providing an example of “best practice” in caring for women suffering with severe mental illness during pregnancy or post-birth.

An NSPCC report released last week suggests the wellbeing of more than one in 10 newborn babies in England could be improved if all new mothers with mental illness had equal access to good services.

The report states there is evidence to show that the work carried out at the Channi Kumar Mother and Baby Unit, part of the South London and Maudsley NHS Foundation Trust, leads to significant improvements in mental state in approximately three quarters of women, in the sensitivity of mothers with schizophrenia and postpartum psychosis when interacting with their babies and major improvements in the interaction of the babies of mothers with schizophrenia, psychosis and depression.

The 13-bed unit was set up for women who develop or have a relapse of serious mental illness during pregnancy or following the birth of their baby. The unit offers a wide range of treatment, therapy and care which is not offered on the same scale in any other unit in the UK.

One unique factor is the work of a developmental psychologist who works closely with the mothers and infants.

Dr Susan Pawlby works clinically as a developmental psychologist at the unit and academically at the King’s College London’s Institute of Psychiatry.

She said: “I think our unit stands out because we have a developmental psychologist to work with nursery nurses and nurses on the ward and most other units do not have that.

“It means we can give mothers and infants more support in forming and maintaining this early and most fundamental relationship. We have developed video feedback interventions so that mothers can see how their babies respond to them. Together we watch video clips of play sessions, talk about the communication between the mother and her baby in order to help mothers develop their relationship with their baby.

“We systematically evaluate this intervention and see how effective it is. Our work is to encourage mothers to respond to their babies’ cues, so that mothers become more sensitive and babies more co-operative in their interaction with one another. I am delighted our work has been recognised by the NSPCC.”

Alongside this support, the Mother and Baby Unit also treats mothers with medication where needed. The unit also offers various forms of therapy (psychological, art psychotherapy, cognitive behavioural therapy and cognitive analytical therapy), life skills, health skills, leisure activities, baby massage and dance therapy.

Following the release of the report the NSPCC is calling on health ministers to lead a drive to address major gaps in access to mental health services for pregnant and new mums.

Mental health problems including depression, anxiety, postpartum psychosis, obsessive compulsive disorders,  eating disorders , schizophrenia, post-traumatic stress disorderand personality disorder can begin or escalate when a woman is pregnant or in her infant’s first year. They can have a damaging effect on family life, and in the worst cases, impact on babies’ health and welfare.

Evidence shows that the vast majority of these illnesses are preventable and treatable, and with the right support, the negative effects on families can be avoided.

Sally Hogg, author of the NSPCC report, said: “The Mother and Baby Unit at Royal Bethlem Hospital provides excellent support for mothers suffering from perinatal mental illnesses and their babies. They do fantastic work to help mums to care for and bond with their babies, which helps ensure these children have the best possible start in life.

“It is crucial that more units like this are made available across the country for all families who need them, as without access to specialist units such as this some mothers don’t get the right help and can be separated from their babies, which is traumatic for the whole family.”

For more information on the NSPCC report:

http://www.nspcc.org.uk/Inform/resourcesforprofessionals/underones/spotlight-mental-health-landing_wda96578.html

Read Susan’s story here

#RT via Bridget via http://www.slam.nhs.uk


It’s A Mad World

Don’t Call Me Crazy launches It’s A Mad World – a season of films on BBC Three looking at a range of mental health issues affecting young people in Britain today, from schizophrenia, OCD, eating disorders and self-harming to dealing with family members affected by mental illness.

http://www.bbc.co.uk/programmes/p01b86w5

#RT via Bridget


Study Title: Social Inclusion and People Living with Schizophrenia

We are approaching your organisation to seek your help with a new study/online questionnaire aimed at people who are living with schizophrenia. You can find the link to the study’s questionnaire further down this email.We would be very grateful if you would post details about the study on your website, or circulate information about it to any of your members who might be interested in participating.
More details about this 2013 study

This survey is for people living with schizophrenia.

The study is part of a range of activities that the Swiss pharmaceutical company, F. Hoffmann-La Roche, is undertaking with patient organisations. The study DOES NOT look at treatment or the effects of treatment for schizophrenia, but instead aims to identify some of the challenges faced by people who are affected by schizophrenia—particularly the challenge of being ‘socially included’ in society. The intention is to find out how healthcare policy can improve, and present this information to policymakers.

The study is using a new definition of the term SOCIALLY INCLUDED (see foot of this email).

Who is managing this survey?
PatientView is managing this survey on behalf of Roche. PatientView is a UK research organisation that works closely with patient groups, and publicises the patient movement.

Anonymity
Everyone who takes part in this survey will be completely ANONYMOUS, and no IP addresses will be collected by the survey managers.

However, anyone who takes part and wishes to OBTAIN THE RESULTS OF THE SURVEY can leave an email address at the end of the survey questionnaire.

The survey will close on Monday August 19th 2013.

Link to online questionnaire: ‘Social Inclusion and People Living with Schizophrenia’

[http://svy.mk/17fNTW4]

Thank you for your interest. If you have any further questions about this survey, please contact …

Dr Alexandra Wyke
CEO, PatientView
Tel: +44-(0)1547-520-965
E-mail: info@patient-view.com

The study is using a new definition of the term SOCIAL INCLUSION, created in February 2013 after consultation with 30 patient groups:
“All individuals receiving the support they need to participate in their community (to the degree they themselves choose), and to share in the civil, economic and political rights of that community.”

#RT via Martin


Would you like to take part in a group discussion about genetic testing and clozapine?

My name is Ben Spencer and I am a psychiatry registrar at the Institute of Psychiatry working on a research project that is looking into people’s views of genetic testing in clozapine.

Schizophrenia is a common illness that can affect how people tolerate stress, and their experience of the world.  Some people who have schizophrenia do not get better on standard medication, and treatment with clozapine is offered.  Clozapine can affect the immune system and so people who take it have to have regular blood tests, and sometimes get side effects.

At the moment, researchers are looking into whether it might be possible to use a genetic test to predict if people with schizophrenia would benefit from clozapine, or would get side effects.  This research may mean that people would have to have blood tests less often when they are treated with clozapine.

No one has looked into people’s views on this, and I am keen to find out what people think.  To do this I have written a questionnaire about it to give to people.  I need to find out though if it’s asking the questions that service users think are important.

I am looking for people who have experience of mental health services, and who would like to look at a questionnaire we have written to find out about people’s views and attend a focus group discussion on it.  Ideally if you have knowledge or experience of clozapine or psychosis.

If you wanted to take part I would send you an information sheet about the study, and a copy of the questionnaire for you to complete in your own time.  I would also send you a feedback form so you can write about your experiences of it.

Then I would invite you to come along to a focus group to discuss with other similar people you thoughts on the questionnaire itself (is it too long, short, too simple).  Also at this group we would discuss the research itself and the issues or questions you think we should be asking.

You would be given your travel costs (up to a maximum of £10) to attend the focus group, and a £10 Marks and Spencer’s gift voucher for your involvement.

Please note the focus group session will take place on Thursday  25/07/2013 in Brixton.

Please get in touch if you are interested in being involved in this project by emailing : clozapineandgenes@gmail.com  with your name, phone number, and address to post the study information to.

The deadline to respond by is Wednesday 10/07/2013.