No systematic approach to supporting people with autism who are admitted to in-patient psychiatric units

A significant number of people with autism require in-patient psychiatric care. Although the requirement to adequately meet the needs of people with autism in these settings is enshrined in UK law and supported by national guidelines, little information is available on current practice.

A recent research study has found that there is no systematic approach to supporting people with autism who are admitted to in-patient psychiatric units. Significant concerns are highlighted of lack of professional training and skill sets resulting in variable clinical practice and care delivery underpinned by policy deficiency. This could account for the reported in-patient outcomes of longer stay and segregation experienced by people with autism.

Reference: Jones K, Gangadharan S, Brigham P, Smith E, Shankar R. Current practice and adaptations being made for people with autism admitted to in-patient psychiatric services across the UK. BJPsych Open. 2021 May 14;7(3):e102. doi: 10.1192/bjo.2021.58. PMID: 33988120.

See more here

Minimal Medication Alternatives for Psychosis Needed

Source: Mad in America:
http://madinamerica.com/2021/06/minimal-medication-alternatives-psychosis-needed/
By Ayurdhi Dhar, PhD, June 2, 2021

Researchers question the long-term use of antipsychotics and suggest increased research and investment in psychosocial interventions.

Mad in America

In a new opinion piece in Psychosis, psychologist Ruth Cooper of the University of Greenwich and her colleagues make a case against the long-term use of antipsychotic medication for psychosis and schizophrenia. They then advance their position that, given current evidence, the UK must explore psychosocial interventions and minimal medication approaches for patients.

Antipsychotic medication is the first line of treatment in the US and the UK. Criticisms have followed it through history and, more recently, become louder. Recent research has shown that people who stop taking antipsychotics tend to fare better in the long run and are more likely to recover. Others have focused on the numerous adverse effects of the drugs, especially their long-term effects. Most disturbingly, they have been associated with brain atrophy in children and causing decreased cortical thickness in adults.
Other criticisms have come from research on people’s experience with antipsychotics. Patients describe some benefits but also a reduced sense of self and agency. The biggest survey to date noted that most patients reported negative consequences of being
on these drugs. Resultantly, there has been a push to develop guidelines on withdrawing safely from psychiatric drugs, as withdrawal effects from antipsychotic medications can be debilitating.

Cooper and her colleagues begin by citing the 1979 WHO findings that, when it came to psychosis, people in poorer countries with less access to medication did better than those in rich nations. While antipsychotics help reduce symptoms for some patients, they can be ineffective in others and have significant adverse effects. New research suggests that for every 6 people treated with antipsychotics, 1 person has improved beneficial outcomes.
There are also numerous reasons patients stop taking antipsychotics. The adverse effects can include “significant weight gain, diabetes, heart disease, movement disorders and structural changes in the brain including brain volume reduction… sedation, lethargy, emotional flattening and sexual dysfunction which can adversely impact on quality of life”.
Patients can be coerced into treatment which can impede the relationship between them and the mental health system, closing down opportunities for psychological treatments.

The authors write that the UK’s NICE (National Institute for Health and Care Excellence) guidelines support shared-decision making between mental health workers and patients. As most patients retain their decision-making capacity, they have the right to choose alternative treatments if they desire. The authors write:

“Given the adverse effects of antipsychotics, ineffectiveness for some people, and further reasons for stopping described above, requests to stop or not take these drugs should be seen as a legitimate preference not, as some clinicians may assume, as ‘lack of insight.’”

The authors also note that antipsychotics became popular because they were thought to reduce relapse. Studies have also shown that stopping antipsychotics suddenly can lead to florid psychosis. However, while this was earlier confused with relapse, it is now hypothesized as a result of drug withdrawal caused by dopamine supersensitivity.

Thus, many patients want to get off their medications but have little guidance or help. Given the absence of national guidelines and pressure on mental health workers to discharge people, practitioners are often unsure about alternate interventions.
Under the pressure of service users who have developed their own resources to come off psychiatric drugs such as “The Harm Reduction Guide To Coming Off Drugs” and “The Inner Compass Initiative,” NICE has asked for further research into psychosocial interventions.

More recently, the Royal College of Psychiatry also published a set of resources and guidelines to withdraw from antidepressants, signaling building support for the deprescribing movement.

The authors explore the literature around minimal medication approaches to psychosis across the world. Historically there have been numerous places where minimal medication approaches and psychosocial treatments have been attempted – Soteria House in the US and Switzerland, Kingsley Hall and Villa 21 in the UK, and currently Open Dialogue in Finland (earlier need-adapted treatment).

These places have either not used antipsychotics, or minimized their use (delaying them by 6 weeks), or used benzodiazepines for a short period instead. They focus on providing emotional and practical support and sometimes on the process and experience of psychosis.

Cooper and her colleagues write that there are two major systematic reviews of these approaches, first by Calton and colleagues in 2008 and another by Cooper and Laxhman in 2020. Reviewing 9 psychosocial treatments in 2,250 patients, the analysis found that most treatments, when compared to the antipsychotic-using control group, were at least as effective as the control group – both in symptom reduction and improving functioning.

This was achieved via far less antipsychotic use and with no evidence of any greater harm in the minimally medicated patients. However, there are many limitations with these promising studies, such as the absence of high-quality research, small samples, and the exclusion of high-risk patients.

Recently an Australian trial compared, among first-episode psychosis patients, an antipsychotic group with another group that received intensive psychosocial treatment (care-coordination, CBT, psychoeducation, family intervention, and close monitoring). After 6 months, and then 1 and 2 years, no difference was found between groups. Drop- out rates were high in both groups. Cooper and colleagues write:

“Despite this, the study gives preliminary evidence that an intensive psychosocial treatment package, similar to what may be already available in early intervention services, could be a potential alternative to antipsychotics for some. A larger trial of this treatment package is certainly warranted.”

Currently, in Vermont and parts of Norway, institutions have established minimal medication approaches under pressure from service users. Formal evaluation of these initiatives has not yet been published.

The authors note that there are several approaches to alternatives to medication (or with minimal medication) that can be offered to patients who prefer them.

First, different types of psychosocial interventions can be used, such as “emotional and practical support, talking therapies and psychoeducation… ‘being with’ people who are actively psychotic, in a non-intrusive manner, practical, social, and creative activities such as exercise, art’ and animal therapy, and peer support from people with lived experience.”
Second, alternatives like The Hearing Voices Movement allow people to see their voices as meaningful and help incorporate them into their life experience by working with the voices.

Third, building a better relationship with family members and friends who are often concerned about relapse is important; this involves including them in appointments and giving them good information. They can provide essential support, and if not, then places like Soteria provide relief from difficult familial circumstances. Short-term use of benzodiazepines (less than 1 month because of their addictive properties) can alleviate some anxiety. Lastly, plans to manage deterioration and relapse should be made in collaboration with other services. A strong plan on how to deprescribe and get off antipsychotics is important. Research has shown that a very slow taper is most effective in reducing withdrawal effects. Tapering strips are also of use. This is the period when people might need extra support and close monitoring.

Some might benefit from completely stopping the use of the drugs, while others from maintaining minimal dosage. Good information on withdrawal symptoms and recognizing and dealing with them must be given to patients and their families.

The authors conclude by noting:
“We have an opportunity now to listen and respond to service users and, as in Norway and Vermont, governments could encourage the provision and further research of minimal medication services to provide people with a genuine choice about their treatment. Further discussion, in consultation with service users, of the key elements such a service should include is needed.”


Cooper, R.E., Mason, J.P., Calton, T., Richardson, J. & Joanna Moncrieff (2021) Opinion Piece: The case for establishing a minimal medication alternative for psychosis and schizophrenia

Psychosis, DOI: 10.1080/17522439.2021.1930119

‘Shortcomings in care’ by Pennine Care NHS Foundation Trust found as man died after absconding from hospital amid ‘deteriorating mental health’

Senior Coroner to make report to the Department of Health and Greater Manchester Health & Social Care Partnership to prevent future deaths.

At the time of Martin’s death, there was a failure to conduct a detailed risk assessment in the period while a bed was sought or to agree a joint plan to manage the risk.

It is probable that failure contributed to his death.

Martin Gibbons, 52, from Ashton-On-Mersey, Sale, was found dead at Stamford Golf Course in Stalybridge in March last year after he had absconded from hospital whilst awaiting medical treatment. 

On the morning of March 19, 2020, Mr Gibbons had been admitted to Tameside General Hospital following an incident while staying at his younger sister’s home in Glossop

Mr Gibbons’ sister, Terri Blair, had awoken in the morning to a series of ‘alarming’ text messages implying he was going to hurt himself.

Mr Gibbons was found outside in a nearby street with a large number of cuts to his arm and a half-empty bottle of whiskey.

He was admitted to Tameside General Hospital where his cuts were seen by doctors and then moved to a designated mental health room for further assessment.

When admitted to hospital on the morning of March 19, Mr Gibbons, who was reported to be in a ‘delirious and drunk’ state, told doctors he had been receiving threats but would not elaborate further.

He told staff that the incident earlier in the morning had been a ‘spur of the moment’ action.

Following an assessment by the mental health team from Pennine Care NHS Foundation Trust, who work alongside Tameside General, Mr Gibbons was deemed to be a ‘moderate to high’ risk to himself and others.

Mr Gibbons was then given a choice to either stay in hospital voluntarily for psychiatric care or be sectioned under the Mental Health Act. He cooperated with staff and agreed to stay in hospital.

As a Trafford resident, however, he was unable to stay at Tameside and a request was made for an out-of-area bed at a hospital closer to his home. 

He and his family were informed that there could be a long wait due to bed shortages but the inquest heard that no procedures were ‘visibly’ put in place to keep an eye on Mr Gibbons while he waited for a bed to become available.

Senior Coroner Ms Mutch also questioned a lack of documented risk assessment for his care.

Ms Mutch told the court: “There was no evidence that a risk assessment was documented in relation to Mr Gibbons and the risks that he presented in the period between the assessment being completed and the bed being identified.

“It’s clear on the evidence that it was impossible for anyone to know just how long that period of time was going to be but it was likely to be some while.”

Ms Mutch added: “There was no evidence to suggest that there was any discussion with the family about how they should support Mr Gibbons in that room and whether it was safe or not for him to leave the room, even for the toilet.”

Having spent the afternoon waiting for a bed to become available, Mr Gibbons told his sister he was going to the toilet shortly before 5.30pm.

“Myself and Martin were then left in the mental health room for around two hours, with no idea of how long we would be there as there is a shortage of mental health beds,” Mrs Blair explained.

“The mental health team hadn’t notified any of the NHS staff of the severity of his state, no one was told to check on us, I was not informed that the mental health room has a panic button that runs right the way round it should I have wanted to raise an alarm.”

Mrs Blair explained that Mr Gibbons told her he needed to go to the toilet and she had gone to check on him and bumped into him in the corridor.

Twenty minutes later, he said he was going to the toilet again. She went to check on him again about a minute later and he was not there.

Ms Mutch told the court: “At the time of his death, there was a failure to conduct a detailed risk assessment in the period while a bed was sought or to agree a joint plan to manage the risk.

“It is probable that failure contributed to his death.”

While Ms Mutch was presented with evidence to indicate that procedures and new documents had been implemented within the two trusts, including a clearer definition of how someone is deemed to be of ‘high risk’, she feared it was not enough on a ‘national’ level.

As a result, Ms Mutch said she would be making a report to prevent future deaths directed to the Department of Health and Greater Manchester Health & Social Care Partnership.

The senior coroner said the report would identify the need for a ‘documented risk assessment and a documented share care plan between acute and mental health trusts’.

It would also look into the issues around mental health bed shortages and a ‘responsibility’ of care.

Ms Mutch explained: “There was a very clear message from all the mental health witnesses who gave evidence that the issues of beds are ongoing in terms of patients such as Mr Gibbons who need to be placed in those beds.

“Another issue is the fact that he was assessed by a mental health trust in that mental trust area but because he doesn’t live there, it’s another mental health trust that has to take responsibility for his care.

“That’s not an issue with the trust, they’re following a system, but that’s something that clearly isn’t right.”

Full story here

Source: Manchester Evening News, 23rd April 2021

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