Family Perspectives: CHARM Public Meeting “The Crisis in Manchester’s Mental Health Services

Simon Smith and Mary Patel talk about their experience of supporting family members in crisis in the community. These presentations were made at our public meeting on May 12th attended by over 50 people. We discussed why Mental Health Services in Manchester are being overwhelmed by the level of need and what we can do about it. This video is a record of the proceedings.

CHARM MONTHLY MEETING DATES

Anyone who wishes to promote the principles of CHARM is welcome to attend our organising meetings. 

We meet every 4 weeks.

Dates of next meetings

Tuesday 8 June 6.30 pm

Tuesday 6 July 6.30 pm

Tuesday 3 August 6.30 pm

summer break

Tuesday 14 September 6.30pm

Please email charm.mentalhealth@gmail.com to be added to the mailing list for charm organising meetings.

Ear to the Ground

 New Book: Advance Information Sheet 

SURVIVOR SERVICE USER MAD IDENTIFIED ( SSuMI ) and ALLY VOICES Organisation and Action in the UK from 1971 to 2010 

Catalogue of a Personal Collection In Mental Health 

Anne E Plumb 

Ear to the Ground 

Anne Plumb has catalogued her lifetime personal collection of over 850 papers and artefacts, to be held for public access at Archives+ in Manchester’s Central Library. This new book will detail that catalogue. 

“I hope my collection offers many people a glimpse into mental health activism locally and nationally from the time of my first hospitalisation in a psychiatric unit in the late 1960s, and then being active until around 2000,” says Anne. 

“I have deliberately selected voices of Survivor / Service user / Mad Identified people and our allies. These voices have been swamped by all the other voices, professional, academics, researchers, are often ignored, and in danger of being lost. My intention is to bring these scattered voices together according to organisation or area of action. We need to pay tribute to the activists and have them remembered. Activism of this period was not easy, and could take its toll in small and bigger ways.” 

The collection includes items picked up at meetings and conferences, newsletters and magazines, newspaper cuttings, flyers, correspondence, pamphlets, booklets, seminal books, CDs, DVDs, and some photographs. 

Paperback, 130pp 

£7.99 (cost price) 

Non-fiction, mental health 

ISBN 978 1913 148 133 

PDF, free online 

A digital text file in standard print, in large print and in other formats. 

Publisher: TBR Imprint 

Due: late summer 2021 

Anne does not identify as a disabled person, and sees her activism as being alongside the disabled people’s movement. Her late husband was Ken Lumb, a founder member of the Greater Manchester Coalition of Disabled People, GMCDP. 

GMCDP is working closely with Archives+ to establish the Disabled People’s Archive, alongside this activism. 

Crisis in Manchesters Mental Health Services Public Meeting 12th May 2021

On the 12th May we held a public meeting attended by over 50 people to discuss why Mental Health Services in Manchester are being overwhelmed by the level of need. This video is a record of the proceedings.

It’s time for us to get together and say what’s needed. As the crisis in community care has increased so have hospital admissions.

This is a consequence of a lack of resources combined with resistance to thinking beyond the outmoded medical model of care based around the psychiatric hospital. The discussion is always about the lack of “beds”.

We say we don’t need more beds, we need better community support and care for people in crisis.

Panel:

Dr Gail Coleman Oluwabusola (Chair)

Paul Baker, CHARM

Anandi Ramamurthy, CHARM

Claire Miller, Unison Representative

Amy Wells, National Survivor User Network Mary Patel, Family member

Dr Jeff Evans, Mental Health Campaigner

Simon Smith, family member

Exploring the experiences of voice hearers in the UK who identify as belonging to a minority ethnic group.

Research Participants Wanted!!

My name is Zafirah and I am a trainee clinical psychologist. I am currently looking for adult voice hearers from minority ethnic groups to participate in my doctoral research project.

What is the research?

This study aims to explore the experiences of voice hearers in the UK who identify as belonging to a minority ethnic group.

Background

In western communities such as the UK, voice hearing is mainly viewed as a symptom of psychiatric illness. Medication is often the first-line treatment provided to voice-hearers with the aim to eliminate voices. However, research suggests that hearing voices may be a common experience within the population, and that many people belonging to minority ethnic groups may attribute their experiences of hearing voices to spiritual, religious, guiding forces, or other explanations. Therefore, this study aims to explore the experience and perceived impact of having a different explanation whilst being immersed within dominant western perspectives and explanations of hearing voices.

We are looking for individuals who:

–     are 18 years old or above.

–     identify as belonging to an ethnic minority group in the UK.

–     have alternative culturally informed voice hearing explanations (i.e. other than the predominant medical illness perspective).

–     have been hearing voices for at least one year.

–     have previously accessed/currently accessing mental health services for psychosis in the UK.

What would you need to do?

An initial brief telephone conversation

+

An online interview
(about 60-90 minutes)

Benefits?

You will receive a £10 amazon voucher as a thank you token for your participation.

If you are interested in participating, please email Zafirah Sathar at zb79@canterbury.ac.uk for more information

North-West Right to Refuse Electroshock: A little history

Campaigning for the right to refuse ECT (Electro-Convulsive Therapy, or ‘Electroshock’) has a long history, including in the North West of England. In 1994, in Manchester, we created an organisation called ‘Psychology Politics Resistance’ (PPR), and produced six newsletters, the first of which is here. PPR brought together those who use mental health services, those who work as professionals in those services and academics who teach and research about alternative non-oppressive approaches to mental health. The gross abuse of power that ECT represents in mental health practice was taken up by PPR. In PPR Newsletter Number 4 we announced the formation of a ‘North West Campaign to Refuse Electroshock’. This is what we said in one of our first reports:

“The North West Right to Refuse Electroshock Campaign was formed following a packed public meeting organised by Psychology Politics Resistance in May 1997 at Manchester Town Hall. The founding meeting heard members of ECT Anonymous describe the effects of this ‘treatment’, and the lack of any credible rationale for it. 

Survivors of ECT (‘Electro-Convulsive Therapy’ or electroshock) spoke about the way they had been forced into it, and clinical psychologists and psychiatric nurses told of the pressure put upon them to get patients to agree if they seemed unwilling. Many radical psychologists and psychology service users want ECT banned, but the focus of this campaign is around the quite simple and reasonable human rights issue; that patients should have the right to refuse.

In September hospitals in the region were sent a simple list of questions about the way they used ECT (‘Electro-Convulsive Therapy’ or electroshock). Research has shown, for example, that older women are much more likely to be given ECT than other groups, and there is also disturbing evidence that people from different cultural minorities are also given ECT disproportionately more. The Pippard report commissioned by the Royal College of Psychiatrists revealed that certain hospitals were using ECT machines that were old in a bad state of repair (thus increasing the risk that patients suffer). There are also worrying reports that different hospitals in the North West region are more or less likely to give ECT, and that mental health workers (such as psychiatric nurses and clinical psychologists) are encouraged to pressure patients to have ECT against their will. So, the hospitals are being asked:

(1) How many patients per year receive ECT? (2) How many patients per year receive ECT whilst under a mental health section? (3) What proportion of ECT patients are women? What proportion are men? (4) What proportion of ECT patients are of ethnic minority? (5) What proportion of ECT patients are under 16 years, between 16 and 60 years, and over 60 years? (6) How often is/are your ECT machine/s serviced? (7) Do sectioned patients have a right to refuse ECT? Simple questions? The North West Right to Refuse Electroshock Campaign is determined to get the answers. People should have the right to decide, and to have their decision to say no to ECT respected. We are determined to uncover the different levels of ECT given by different hospitals, to different kinds of people, and to support people who decide that they do not want this treatment. So, the key continuing tasks of the campaign are to raise this issue, to pressure anyone involved in coercing patients, and to support the right to refuse. We refuse to accept secrecy and silence when basic human rights are at risk. The campaign will make public lists of hospitals and psychiatrists that administer ECT against patients will. Join us, and support the campaign.”

We organised another well-attended public meeting in November1997 at Friends Meeting House in Manchester with invited speakers from MIND and UNISON. This is what we said about that meeting in an update to members and supporters:

“The North West Right to Refuse Electroshock held a packed public meeting on 4th November to discuss results of a survey of hospitals. Jean Taylor from SHOCK, a group in Blackpool that has been campaigning for some years, spoke about her experiences of resisting ECT, and about ways she succeeded and ways she was beaten by the system. Penny Taylor from Having a Voice and North Manchester Users Group, spoke about experiences of people in her group. Representatives of the legal firm Alexander Harris then told the meeting of their success in obtaining legal aid (financial help for people taking cases to court) for a client who had been badly damaged by ECT and is now suing the local health authority, and of the new revelations of faulty machines being sold in Britain. Alex Adam James from the North West Right to Refuse Electroshock campaign discussed the results of our survey. 

From the survey it was clear that many more women were given ECT than men in the hospitals that replied, and there was a blatant attempt to conceal the lack of choice that women and men had about whether to have ECT or not. Our survey made the hospital administrators jump — we let them know that we were going to discuss their responses publicly and gave them a date to give us an answer — and now they know we are watching them, and more people are becoming more confident to join those who are watching, taking power back from the psychiatric apparatus that usually has it easy as far as observation and control are concerned. We know from the testimony of patients, clinical psychologists and psychiatric nurses working in local hospitals that threats of all kinds are made to make people comply. 

Later in the meeting the producer and presenter of the BBC programme ‘Here and Now’ spoke about their attempt to put the issue on the public agenda, and after the meeting people who had been subjected to forced ECT told them of their experiences. The next step is to take the Right to Refuse into the unions and Bury Trades Council (in the North East of Manchester) has already published an article about the campaign in their newsletter ‘Solidarity’. 140,000 shocks are administered to 20,000 patients a year in British Hospitals, and many of the nurses involved have no right to refuse assisting in this barbaric practice. An article in Psychiatric Bulletin revealed that 45 percent of junior doctors did not have accurate knowledge about what the current (themselves largely mythical, it should be said) criteria for assessing and delivering ‘shock’ were! Many more junior staff are revolted by the procedure. It is up to us now to make it clear that we will have nothing to do with it, and to fight for the right for all to say no and to be taken seriously.”

In 1999, we followed this up with a ‘Shock Machine Scandal’ headline on the front page of PPR number 6. (This was unfortunately the last issue of PPR as a newsletter/magazine, and PPR decided to carry on its work as part of Asylum Magazine). This was the article we published:

“SHOCK MACHINE SCANDAL

American women, Imogene Robovit from Iowa, recently managed to get a successful settlement from MECTA Corp., one of the major ECT machine manufacturers, after she sued the company for brain-damage and being rendered unfit to work because of shocks inflicted be a MECTA Model D machine in 1989. At the trial Robin Nichol, MECTA’S President, testified at the trial that MECTA have never performed a single safety check on their machines.

Linda Andre’s newsletter, SHOCKWAVES in the US, published further information about this and also about MECTA’S failure to produce safety studies to the FDA in the required timescale, which sparked of our own investigation in this country.

We discovered that Vickers – who are responsible for the distribution of MECTA products in the United Kingdom were unaware of the problems in America. Our partner in Scotland Alex Doherty wrote to Vickers on the 28 October 1997, bringing both articles to their attention. Vickers on receipt of his letter immediately contacted him by telephone assuring him that an immediate investigation was being undertaken. The spokesman for the company had already contacted the MECTA Corp., who denied that their Director gave any form of evidence at any trial, they also said that safety studies had been sent to the FDA in the required timescale. They promised Vickers that written evidence would be faxed that day. Three days later the evidence still hadn’t arrived, and to quote Vickers’ spokesman, 

“They seem to be stalling for some reason, which leaves us concerned. We have stopped sales of this equipment from the date your letter was received, we don’t need this hassle, we’re out of here. To be honest, to a company as big as Vickers this is only beer money with regard to corporate sales”. 

Our partner contacted the press, and Vickers confirmed that sales of MECTA machines had been suspended. 

Two days later an Investigative Television Reporter Howard Belgarde, BBC Midlands, contacted the Attorney who acted for the pursuer in the Iowa case. He confirmed that Robin Givens did give evidence in a pre- trial setting, and confirmed what was said in SHOCKWAVES article.

The Attorney stated ” The psychiatrist was cleared only because the pursuer was a nurse, and she should have known what she was letting herself in for. If she was in any other occupation she would have won. MECTA however settled out of court without prejudice, and substantial sum was paid”.

The safety certificates were sent to Vickers by fax three days later. We think these safety certificates were only lodged with the FDA after the matter was raised here in the UK. We would like to know the precise date the documents were lodged!

Going back to the subject of the sales of the machines by Vickers, despite their assurances that sales had been stopped from 29 October 1997, another Investigative Reporter, Colin Savage, working on a BBC programme called, Here and Now, rang the company and was offered a MECTA machine to buy. We believe Vickers were obviously embarrassed by the whole situation and deliberately covered up the fact that these machines were still being sold from under the counter. They were up for sale at this time and did not wish any adverse publicity.*

In view of the current level of interest in ECT and the fact that this company is in the death business, we think it a good idea to discover the company’s attitude to the safety of these machines and in particular whether they intend to withdraw the 70 or more ‘doubtful safety’ machines which Vickers have already sold to British hospitals.

In their 1996 ECT Audit, the Royal College of Psychiatrists visited 55 clinics in Wales, East Anglia and the North East Thames region, and sent postal questionnaires to the remaining 166 ECT clinics in England. Their Audit showed that 5.5% of clinics visited, and 14% of those clinics that answered the questionnaire (129 out of 166), used MECTA machines. The RCP also lists MECTA as one of the manufacturers whose machines meet their guidelines.

In the meantime people across the UK are being treated on unsafe and obsolete machines (just for the record, we believe all machines to be unsafe). On a recent TV programme about ECT which allowed filming of an actual ECT session, one of our colleagues noticed that the psychiatrist was using a MECTA SR2 machine (this machine is the same model with a different number as the one used in Iowa on Imogene Robovit)! The voltage read-out on the treatment parameters read 229.9 volts (mains voltage almost)! This particular machine is capable of delivering 1200mC of electric charge but IEC and TUV safety approvals don’t apply above 500mC (according to RCP handbook- the one they don’t read)! Imagine an untrained or unsupervised junior doctor twiddling with the nobs of this potentially lethal piece of equipment!

At a meeting set up by a Community Health Council in Salford in October last year I questioned the invited psychiatrist about the machines being used in his hospital. He said he didn’t know, but they would be getting a new one in six months time. When asked what happened when the machine they were using broke down he admitted, publicly, that they used an obsolete machine. When asked about the safety of continuing to give ECT to the patients over the next six months he just blushed and muttered under his breath. This disgraceful state of affairs continues as we write and thousands of people are being put at risk across the UK every day. The cavalier attitude of certain members of this profession continues to anger me greatly.

In view of the current level of interest in ECT and the fact that this company is in the death business, we think it a good idea to discover the company’s attitude to the safety of these machines and in particular whether they intend to withdraw the 70 or more ‘doubtful safety’ machines which Vickers have already sold to British hospitals and we intend to follow this up, we’ll keep you posted.

*Mecta machines are now distributed by Hillenbrand Industries (Indiana Tel.: 812 934 700 fax 812 934 1963 – President/chief exec: W Austen Hillenbrand) who also supply coffins and funeral insurance!

This article was written jointly by Pat Butterfield, co-founder of ECT Anonymous and Alex Doherty ‘Need for Change’ campaigner in Scotland. January 1998.”

What is really scandalous is that this carries on now, that ECT is given. 

What we learned in the course of the campaign was that there were people who chose to have ECT, but that the key issue is choice, a choice which most people are not given. That fundamental human right to choose treatment in full knowledge of the possible benefits or terrible side-effects is what is key.

That Right to Refuse Electroshock was a little campaign, and the work has been carried on by other groups, including in Asylum Magazine. Now it is time to pick things up again and get going on the issue in Manchester and the North West.

Grave concerns about the rapid, widespread rollout of the High Intensity Network’s ‘Serenity Integrated Mentoring’ (SIM) intervention across NHS England

SIM is a “coercive” approach using police officers as interventionists and is being rolled out across England.SIM is designed for people who have not committed a crime, but are in contact with mental health services, are frequently at high risk of suicide and self harm and are deemed “high intensity users” of emergency services.

StopSIM Coalition Consensus Statement relating to The High Intensity Network (HIN) and Serenity Integrating Mentoring (SIM)

“We are a coalition of mental health service users and allies who have grave concerns about the rapid, widespread rollout of the High Intensity Network’s ‘Serenity Integrated Mentoring’ (SIM) intervention across NHS England. The intervention is designed for people who have not committed a crime, but are in contact with mental health services, are frequently at high risk of suicide and self harm and are deemed “high intensity users” of emergency services.  Key intervention components include a co-ordinated withholding of potentially life saving treatment by multiple agencies (A&E, mental health, ambulance and police services) and, using SIM’s own words, the “coercive” approach of a police officer as an interventionist. 

We call on NHS England to:

  1. Halt the rollout and delivery of SIM with immediate effect, as well as interventions operating under a different name, which are associated with the High Intensity Network (HIN).
  2. Conduct an independent review and evaluation of SIM in regards to its evidence base, safety, legality, ethics, governance and acceptability to service users.
  3. Respond to this statement within 7 days to communicate the actions taken by NHS England. Communications should be directed to contact@stopsim.co.uk

Our concerns about SIM relate to its evidence, legality (including GDPR, Human Rights and Safeguarding), aims, governance and ethics. Interventions or service models operating using SIM principles may be known by alternative names, however, for brevity, this statement equally applies to those services, interventions and models.

This is a preliminary consensus statement. We have been researching SIM and the HIN for a number of weeks in preparation for the release of a detailed and referenced statement.  However, we are releasing this brief statement since becoming aware that, due to the hard and concerted effort of service users, survivors and allies over many weeks – and in some instances, years – that high level conversations have been prompted.  We felt it was critical to make our position public as soon as possible. A longer version of this statement, with citations, is shortly forthcoming.

We expect to be involved in any high level conversations concerning the High Intensity Network and SIM as a coalition of service users and allies.  We can be contacted by email at contact@stopsim.co.uk or via Twitter DM: @StopSIMMH. We will be publishing further updates on our Twitter account.  

In solidarity with survivors, service users and allies who have worked tirelessly to shine a light on injustice,

The #StopSim Coalition”

Copied to: Sir Simon Stevens, CEO – NHS England Lord David Prior, Chair – NHS EnglandClaire Murdoch, National Mental Health Director  NHS EnglandMartin Hewitt,Chair – National Police Chiefs’ CouncilSir Tom WinsorHer Majesty’s Inspectorate of Constabulary and Fire and Rescue Service.

Global Families for Dialogic Approaches (GFDA) Family Survey A request for your assistance

A message from the Global Families for Dialogic Approaches (GFDA), a global group of individuals, family and social network members who have experiences with mental health supports and services. They are asking for your help, either by completing the survey below and/or sharing this survey link with others. They are getting ready to present a session on the perspectives of families at the HOPEnDialogue Research Conference next month, June 21-23 which will be online and free.

“We would appreciate any assistance you can give us in sending this survey out to as many individuals, family members and others who have experienced some type of mental health care. We are interested in learning what services help, what more is needed and if families would be interested in dialogic approaches.”

Open Dialogue is an approach pioneered in Finland that replaces top-down relations between practitioners and people affected by mental health challenges and their families with opportunities for all to be heard as equal experts. The Open Dialogue approach brings together clinicians/therapists/peer specialists and individuals with their families and members of their social network in ways that ensure that all of those present have a voice. Open questions replace one way treatment so that everyones’ voice helps to guide support, care and treatment.

All survey results will be anonymous. If people volunteer to add their emails at the end of the survey we will add you to our mailing GFDA list. 

The deadline for the survey is May 27th, 2021 in order to have time to summarize the results before the conference. 

Here is the link for the survey, 
https://docs.google.com/forms/d/e/1FAIpQLScibgmKvMXq4jiA6bAeDTYJdPYzTiIbF6IJIByavOzF_-K7YA/viewform?usp=sf_link

We are working on translating this survey to all languages needed around the world. Please contact us if you have a need or can help us translate to the languages used in your area.

If you have any questions please contact: cindypetersondana@gmail.comPatw31754@gmail.com orjen@jenkilyon.co.uk

The link for the June 21-23 virtual HOPEnDialogue Conference is below. There is no charge for this virtual event. Please join us if you can by registering below:
https://www.hopendialogue.net/events/3rd-meeting-of-the-international-open-dialogue research-collaboration/
Thank you for assisting us in this important work!

Mental health boss says it’s too much work to find out if legal consent has been given before administering controversial ECT Treatment

Dr Alice Seabourne, medical director at GMMH defends overuse of ECT in Greater Manchester saying it is in line with NICE guidelines.

See full M.E.N article here

Dr Alice Seabourne disputes the findings of the recent Freedom of Information audit of the use of electroconvulsive therapy (ECT) that showed that GMMHT uses ECT at the fourth highest rate in the country,

Further, GMMHT did not answer all of the Freedom of Information questions it was asked especially about whether patients gave consent before the procedure. Her grounds for not providing the requested information was that it was not held centrally and finding it would ‘create an unreasonable amount of work’ especially considering the pressures of the pandemic.

In spite of the considerable medical doubts about the efficacy of the treatment Seabourne claims “Electroconvulsive therapy (ECT) is an effective, evidence-based treatment which is approved by the National Institute for Health and Care Excellence (NICE) in England and is delivered to patients within established legal frameworks.

Dr Seaborne said her staff take the use of ECT ‘extremely seriously’ following NICE and government guidelines, and that all GMMH ECT clinics are members of the Royal College of Psychiatrists external review system for the therapy.However GMMHT are using this last resort treatment at one of the highest rates in the country and at 43 times the rate of our neighbouring Trust, MerseyCare,

Rather than enter into open discussions about the overuse of ECT in Greater Manchester, Seabourne claims : “Information obtained via the Freedom of Information route should be approached with caution as the process was not designed to produce research, and any data sets are liable to be incomplete, particularly during the pandemic period – our internal analysis of the data we released as part of the FOI request is not consistent with that attributed to GMMH within the report.”

We would like to see this data and to have an open discussion about the future use of this outmoded treatment with the Trust.