News & Reflections

ISPS UK is recruiting Trustees to join its Board

ISPS UK promotes psychological and social approaches to psychosis. We provide a place where professionals, people with lived experience of psychosis, family members and carers can share their ideas, hopes and struggles, and can examine their differences in constructive dialogue and debate. Our work includes organising national and regional conferences and workshops on key issues, supporting the development of local groups and special interest groups and promoting good practice in psychological approaches to psychosis.

If you are passionate about creating a paradigm shift in how we understand and treat psychosis, and can spare a half day a month, please consider joining us.

To apply to be a Trustee, please download our Trustee recruitment pack and send a CV and a covering letter to admin@ispsuk.org, by no later than Thursday 31st May.

Interviews will take place on the 12th and 13th June.

For an informal conversation about the role or organisation, please email us to arrange a chat with Akiko Hart.

We would especially welcome applications from those with extensive experience in any of the following areas:

  • Governance
  • Employment law
  • Financial planning and control
  • Event/conference management
  • Marketing and media relations

As ISPS UK is a membership organisation representing and bringing together a broad variety of people, we would especially welcome applications from individuals who

  • identify as having lived experience
  • are family members or carers
  • are psychiatrists
  • identify as BAME

 

 

Review of Emily’s Voices by Emily Knoll

Review by Lucy Fernandes

I have oftentimes found solace and a sense of connection in other people’s memoirs, which is why I read ‘Emily’s Voices’, a memoir by Emily Knoll which was published recently by Amazon. It feels important to me, in light of the Hearing Voices Approach, that a voice hearer has taken the step of writing about her experiences and publishing them for other people to read and to benefit from.

Emily tells of her upbringing in a family where her mother prioritised her own emotional needs over those of Emily and her brother, and Emily was encouraged to keep her feelings about this silent. Emily’s mother puts pressure on Emily to succeed, especially in music, and often finds things to criticise about Emily’s cello playing. Years later when Emily is working as a live-in au pair, she finds herself up against a rather unkind employer, Gloria, who piles on the household chores and is very critical of Emily’s cooking. It is during this time that Emily begins to hear voices.

Emily’s voices make cold, critical comments about Emily as if they are scrutinising her from a distance. For example, one of her one of her voices comments ‘I think she makes no effort’. Elsewhere, Emily tells us about a conversation with her mother, where her Mum tells Emily ‘part of the problem is that you don’t make any effort to meet a boyfriend’. Emily hints at a connection between her upbringing and her voices by including the facts of her life all together in one memoir. However, she leaves it up to the reader to join the dots. I hear an echo between the way Emily’s voices talk about her, and the way she writes about her own life: clipped, unemotional sentences of broken commentary.

Emily helpfully discusses the stigma surrounding voice hearing and bravely admits that one of her biggest struggles is she stigmatises herself. We catch a glimpse of this when, worried about stigma, Emily tells her flatmate ‘My mental health problem doesn’t make me a psychopath’. I wonder whether Emily’s use of medicalising language is a way of self-stigmatising. Throughout her memoir, Emily frames her experience in terms of mental illness. Emily has internalised a medical view of her experiences, so much so that even her voices frequently diagnose her with schizophrenia, something she finds upsetting.

Emily looks in several places for support as she learns to cope with her voices. Two close friends, Beth and Daniel, talk openly with her about what she is going through, as does Emily’s Granny, who insists ‘a problem shared is a problem halved’. Emily writes poems, a journal, a short story, and connects to music to release her emotions. Her therapist, Daphne, supports her to begin to make sense of her voices. Perhaps the most important thing Emily does for herself is apply for a job on a research project about hearing voices. Here, her lived experience informs her work.

Emily’s Voices is a success for me because I felt I got to know Emily. I grew familiar with her struggles and, in doing so, I came to recognise the value of her achievements as, step-by-step, she makes her journey towards a life she can be happy with. For much of her life, Emily feels lonely and even one of her voices points out ‘she wants to be understood’. In the careful scrutiny of her life across the pages of ‘Emily’s Voices’, Emily lets herself be understood.

What is psychosis?

We asked attendees at the ISPS Liverpool conference: what is psychosis?

An introduction to the Power Threat Meaning Framework for ISPS-UK members

This is a brief attempt to introduce The Power Threat Meaning Framework to ISPS-UK members. It was published on January 12th in London and attracted much interest with over 400 attending the launch.

A group of senior psychologists (Lucy Johnstone, Mary Boyle, John Cromby, David Harper, Peter Kinderman, David Pilgrim and John Read) and high profile service user campaigners (Jacqui Dillon and Eleanor Longden) spent five years developing the Power Threat Meaning Framework as an alternative to more traditional models based on psychiatric diagnosis. They were supported by researcher Kate Allsopp, by a consultancy group of service users/carers, and by many people who supplied examples of good practice that is not based on diagnosis.

The Framework was funded as a project by the British Psychological Society’s Division of Clinical Psychology, although it is not an official DCP or BPS set of Guidelines (suggestions for good practice) or Standards (codes of practice which are mandatory for psychologists.) Like many documents published by the BPS every year, it is a scholarly work intended to promote discussion and debate, and thus in the long term to contribute to evolving best practice and not just for psychologists

The Power Threat Meaning Framework is a new perspective on why people sometimes experience a whole range of forms of distress, confusion, fear, despair, and troubled or troubling behaviour. It is an alternative to the more traditional models based on psychiatric diagnosis. The Framework summarises and integrates a great deal of evidence about the role of various kinds of power in people’s lives; the kinds of threat that misuses of power pose to us; and the ways we have learned as human beings to respond to threat. In traditional mental health practice, these threat responses are sometimes called ‘symptoms’. The Framework also looks at how we make sense of these difficult experiences, and how messages from wider society can increase our feelings of shame, self-blame, isolation, fear and guilt.

The Power Threat Meaning Framework is thus an over-arching structure for identifying patterns in emotional distress, unusual experiences and troubling behaviour, as an alternative to psychiatric diagnosis and classification. The document sets out the conceptual and empirical basis of such a system and is intended as a foundational intellectual resource. It is important to note that it is not tied to a particular level of explanation (social, psychological or biological) or to a specific theoretical orientation such as cognitive, behavioural or systemic. Thus while it can be used as it stands, it can also be seen as a meta-framework within which many existing models and bodies of evidence can be accommodated, and which can be used to inform future projects translating the framework into practice.

To put it at its simplest, the PTM Framework replaces ‘What is wrong with you?’ with four key questions:

  • ‘What has happened to you?’ (How is Power operating in your life?)
  • ‘How did it affect you?’ (What kind of Threats does this pose?)
  • ‘What sense did you make of it?’ (What is the Meaning of these situations and experiences to you?)
  • ‘What did you have to do to survive?’ (What kinds of Threat Response are you using?)

Translated into practice with an individual, family or group, two additional questions need to be asked:

  • ‘What are your strengths?’ (What access to Power resources do you have?)
  • …and to integrate all the above: ‘What is your story?’

The PTM Framework offers a structure for restoring the links between meaning-based threats (such as betrayal, abandonment, physical danger) and meaning-based threat responses (such as hyper-vigilance, self-injury and carrying out rituals.) Placing all of these in the wider contexts of power and social/ideological meanings helps to identify some broad, probabilistic and overlapping General Patterns and regularities organised by meaning rather than (as with medical diagnosis) by biology.

The Framework offers a way of constructing a non-diagnostic, non-blaming, de-mystifying story about strength and survival, with the potential to re-integrate many behaviours and experiences which would currently be diagnosed as symptoms of mental disorder. The overall message is: ‘You are experiencing an understandable reaction to difficult circumstances. Anyone else who had been through the same events might well have ended up reacting in the same way. However, these survival strategies may no longer be needed or useful. With the right kind of support, you may be able to leave them behind.’

A main aim of the PTM Framework is to restore the aspects that are marginalised and obscured by current diagnostically-based practice: the operation of power, the links between threats and threat responses, the wider social, political and cultural contexts, and the meaning-making and agency of those who are struggling to survive within their embodied personal, social, socio-economic and material environments. Narratives in the broadest sense can offer, and in many settings and cultures already do offer, a rich and meaningful alternative to psychiatric diagnosis. The PTM Framework suggests ways of supporting, conceptually, empirically and practically, the construction and co-construction of narratives, both within and beyond service settings.

 The Power Threat Meaning Framework can be used as a way of helping people to create more hopeful narratives or stories about their lives and the difficulties they have faced or are still facing, instead of seeing themselves as blameworthy, weak, deficient or ‘mentally ill’. It highlights and clarifies the links between wider social factors such as poverty, discrimination and inequality, along with traumas such as abuse and violence, and the resulting emotional distress, confusion, fear, despair or troubled/troubling behaviour. It also shows why those of us who do not have an obvious history of trauma or adversity can still struggle to find a sense of self-worth, meaning and identity.

As well as having implications for therapeutic or clinical work, the Framework suggests constructive alternatives in the areas of service design and commissioning, professional training, research, service user involvement, peer support and public information.

It is important to note that Power Threat Meaning is an over-arching framework which is not intended to replace all the ways we currently think about and work with distress. Instead, the aim is to support and strengthen the many examples of good practice which already exist, while also suggesting new ways forward. The ideas presented in this project are necessarily described mainly at a theoretical level, and much more work will be needed to translate the conceptual framework into practice. The project team welcomes feedback and suggestions for adaptation and improvement, acknowledging that at present the work is at an early stage of development. This is something that ISPS-UK members would be encouraged to do. The longer term aim is to make the PTM Framework into a publicly available resource, by developing accessible versions and materials to support professionals, carers, service user/survivors and anyone else who is experiencing/working with emotional distress. In the meantime, the Appendices in the Overview give some examples of how non-diagnostic alternatives are already operating, together with suggestions and resources for further implementation of these ideas and principles.

There has been much interest on social media about PTFM especially twitter and blogs.

There have been a number of blogs discussing it and an article in The Independent which are well worth looking at:

https://criticalmhnursing.org/2018/01/26/a-mental-health-nurses-first-response-to-the-launch-of-the-power-threat-meaning-framework/#more-1364

https://pegortwo.wordpress.com/

http://www.independent.co.uk/voices/mental-health-trauma-services-mother-family-individual-children-a8215511.html

Among the comments are: ‘It allows people to create their own theories about their lives”.

It is “like a road map the PTFM offers a whole lot of routes but not necessarily the destination. We are going to have to work out where it takes us.” “How could it be applied to organisations that are seen as coercive?” There has been discussion about how to apply it within systems that are so diagnostically-driven, as well as often based upon a business model.

I would recommend all ISPS-UK members to read it and give it a try! The Framework attempts to give us an alternative way of working with MH problems, something that many of us have been wanting for a very long time.

The PTM Framework versions and resources:

The full version is quite long and detailed and consists of eight chapters.

http://www.bps.org.uk/PTM-Main

  • Introduction
  • Chapter 1: Problems of medicalisation and diagnosis
  • Chapter 2: Conceptual and philosophical issues
  • Chapter 3: Meaning and narrative
  • Chapter 4: The social context
  • Chapter 5: The role of biology
  • Chapter 6: The Power Threat Meaning Framework
  • Chapter 7: Service user consultation
  • Chapter 8: Ways forward
  • Appendix 1: Evidence supporting the General Patterns

A shorter overview is available online as well and consists of Chapter 6 in the main document and is probably the best place to start to understand the Framework for ISPS members. It is available on request as a hard copy from membernetworkservices@bps.org.uk.

http://www.bps.org.uk/PTM-Overview

There is also an introduction on the BPS website as well as a guided discussion and slides from the launch. These give a quick introduction to the Framework.

https://www.bps.org.uk/news-and-policy/introducing-power-threat-meaning-framework

Alf Gillham

20/02/17

 

 

What ISPS UK has given me

Neil Thomas, ISPS UK Committee member until November 2017, shares some thoughts on his time at ISPS UK.

Since joining ISPS UK and becoming a part of the Executive Committee,  I have grown not only as a practitioner within my role as a Mental Health Nurse, but as a human being, reflecting on my own developed and constructed biases. The shared personal and professional experiences I have heard, discussed and been privileged enough to be informed about, will stay with me forever. I only wish I was able to give more back to ISPS UK. I cannot recommend ISPS enough for any experts by experience, carers and professionals alike who might want to be involved in an effective movement of likeminded individuals seeking to improve services globally for anyone who may be touched by a psychosis.

Neil Thomas, January 2018

 

Thoughts on stepping down from the ISPS UK Committee

Here, Judith Varley, ISPS UK Committee member until November 2017, shares some thoughts on her time at ISPS UK.

 

My life changed irreversibly in the year 2000 when I found myself living on planet caring as an involuntary volunteer carer for my daughter.  ‘Planet caring’ may seem a strange expression; it comes from a  friend who maintains that once there are mental health problems in a family, life alters completely. You are marooned on another planet – one you have probably never heard of or encountered before and in which everything is rather, or very, different than previously, where you and your family will be treated differently, one to which you will have to adapt quickly, possibly for the rest of your life and for which you have neither expectation nor preparation. I have found all that to be true.

My girl was at university, I’d planned to start a new life as a free adult untrammeled with child / family responsibilities, and had accepted a job in Denmark.  Within weeks, those plans had evaporated for ever.

I could not relate to my daughter, it was as if some alien had taken over her body and our previously good relationship had become ‘spiky’, unpredictable and difficult.  Ward staff were busy with their patients and no-one had time to help me understand and learn how best to help either her or myself.  Some staff treated me as if I was responsible for her situation and seemed openly hostile.  I had been a respected professional so that barrage of antagonism was very new.  It was a time of the deepest despair and isolation I have ever known.  Friends didn’t know what to say or do and whilst I felt for their embarrassment, that didn’t help me either, and feeling awkward, they found it easier to leave me alone.  For the first time in my life for months, I could see no way forward; I was lost.

During those frantic months of confusion, distress and attempts at exploration, by chance, I met Andy, of the Liverpool Mental Health Consortium (now threatened by ‘the cuts’) and he became a mentor and guide, sharing his library and advising me on particular questions.  Also, I met some other local carers and together we developed the Wirral charity ‘Family Tree’, a support group for carers of people with psychotic type diagnoses.  Through Family Tree, we organised some local day conferences, meetings on specific topics and occasional social events.

Also, around that time, I met people involved in Hearing Voices, attended one of their day events in Manchester, and saw a flier for the residential ISPS conference taking place in Manchester a few weeks later.  It was the last flier and I was the last person to leave so I picked it up and applied.  My application was accepted.  The conference had a huge impact on me.

Suddenly, I was speaking with people, lots of people, psychiatrists, psychologists, therapists of all descriptions, social workers, carers and service users who were well informed, welcoming, who understood and had positive attitude.  I was back in a society where it was normal to ask questions.  In the very first meeting, I was introduced to innovations; recovery seemed a real prospect, not a remote delusion. It was a real ‘Wow’ event and time for me.  Clearly, ISPS UK was the society for me.  At that time, there were no carers on the committee, and soon afterwards I applied for a place  and was appointed.

I have related this history in some detail because I want to clarify just how desperate most carers are to understand the situation in which they are suddenly immersed, – or drowning to be more precise –  and their need for support for themselves and to enable them to become part of the solution / recovery /moving forward team for the person they care for.  It is unfortunate that although so many strategies involving family members as equal partners have been known for so long, and their crucial value is undisputed, carers / families are either ignored, or are kept at some distance, often viewed with suspicion, by too many Trusts. In reality, no-one is more willing, committed or able, to do everything they can to help than the dedicated family / friend.  In addition, the informal support of carers give each other and service users, sharing the personal milestones of their individual journeys, set backs and triumphs should never be under-estimated.  Carers provide a life-line for each other in the darkest nights.  Staff may come and go, but informal carers are there for life, and for them, there is no ‘switch-off’ time, it becomes their life.  I am not denying that some families are not helpful, some family members are the primary cause of appalling problems, some families have a long history of abuse and neglect by society as well as by individuals in that society, but most families are desperate to help, and perhaps there are potentially helpful people in every family.

As a member of the ISPS UK Committee, helping organise and contributing to national and even international conferences and meetings has been a delight. There is always so much to learn, awe-inspiring tales of personal courage, survival stories, psychological approaches and insights, commitment, experiences and laughter too to share with others.  It’s all been so valuable; being part of a real community again, and everyone there because they see the urgent need for change to achieve better futures for everyone.  Most of all, those folk who have survived the worst that could possibly be thrown at anyone and managed to come through as extraordinary delightful inspiring human beings; it’s been a privilege to know all of you.  Trusting friendships have been formed with people I would never have met without isps.  In stepping down from the committee I will miss all that and you.  I will continue to support ISPS UK as a member and to promote ISPS approaches and get to meetings whenever and wherever I can.

The disappointment for me, is that my local Trusts have never been seriously interested in anything other than the strictly medical model, and that has become ever more so as funding has tightened and staff have been reduced.  Many of the best, most aware and humane staff have left because they can no longer do the job they could and want to do.

In addition, the most successful and valuable voluntary support services have been savaged locally (and nationally), many disappearing completely as the funding from central to local governments and CCGs has been ruthlessly slashed.  I am in no doubt this will prove to be disastrous, since, the social and economic conditions well known to precipitate mental ill-health, are all increasing apace.

We see the impact in depression, self harm, attempted and actual suicides, eating disorders, bullying, school refusals and violence. In less than a generation, we appear to have become a profoundly dysfunctional society, de-civilised, ill at ease with itself, impoverished in humanity, and accepting of widening inequalities.  Since 2010, governments have deliberately made large numbers of its most vulnerable citizens and their children into refugees in their own country with its cumulative imposed ‘austerity’ policies.  Mrs May described the Tories as the ‘nasty party’; I could use stronger language.  The legacy of mental ill-health and further social problems, especially for the youngest most susceptible children is likely to be appalling, and the costs of trying to repair the damage will be astronomical.  Damaged children who survive, become damaged parents of the next generations, and so current problems are likely to cascade into the future. I cannot be the only person to be sickened by the current adverts for ‘fairy tale’ Christmases showing heavily laden tables and expensive luxury tat when so many have so little or nothing at all.

ISPS UK is not political, but as a member, I am.  Consequently, I will be now be seeking political redress of the social injustices escalating around us, and especially those relating to mental distress.  I have learned so much from my time with ISPS UK and its committee and will continue to use it all at every opportunity I can; ideally to get ISPS policies and practices converted into political policies.

Thank you all for your friendship and the windows you have opened for me as I move into the next phase of my personal journey.

Judith Varley, December 2017

The New Savoy Conference Psychological Therapies 2018: A New Deal for Depression


The 11th annual New Savoy Conference
Psychological  Therapies in the NHS
A New Deal for Depression 

This latest instalment of the annual New Savoy conferences will be held from Wednesday 21st until Thursday 22nd at the Millennium Conference centre in London. It will feature the following themes:

  • The new NICE guideline for Depression
  • IAPT referral, waiting times and recovery figures & antidepressant figures: why hasn’t GP behaviour changed?
  • Supply and demand targets: whose strategy wins?
  • An alternative to compulsion: back to the social origins of depression
  • The use of compulsory treatment under the Mental Health Act: Mental Health Act Review

For further information, please follow this link to the official conference page.

ISPS UK members will receive a 20% discount of the normal conference prices. If you are interested in attending and receiving this discount, please email our administrator Ali.

ISPS UK AGM and New Chair

On 13th November 2017, ISPS UK held its AGM. We presented a summary of our work and finances since we became an Charitable Incorporated Organisation (CIO) in February 2017.

The international conference in Liverpool has been our main undertaken this year. It was a huge success in the sense of attracting over 550 registrations from people from a wide range of backgrounds, providing a very rich programme with over 200 presentations, and receiving a great deal of positive feedback on the value of the experience. We were very glad to be able to offer a much higher number of free and subsidised places than ever before at an ISPS conference, and to have for the first time offered a number of arrangements specifically to support delegates who come alone or find such gatherings intimidating .  Although we don’t yet have final accounts, it is clear that the conference has also been successful financially.   However we’re also aware the conference had limitations. Despite efforts to keep costs low by doing much of organisation ‘in house’ the cost of attending such an event deters many people, even sometimes despite bursaries available to cover fees.

In addition to organising events, we have undertaken other steps which we hope will eventually contribute to our aims.

One such step has been attempting to increase awareness of ISPS.  We have done this through the vehicle of wide promotion of the international conference, through the use of the ‘Liverpool declaration’ which outlines the kind of changes that the conference sought to promote, and also through preparation of videos from the conference which will be used for wider dissemination of the ISPS message.

Another such step has been to try and increase the participation in ISPS UK of people who identify as BAME.  We were pleased to be awarded a grant from ISPS international for a project to do this through a number of measures including meetings with local groups sponsorship of conference places, and follow up events.

A third step has been to take time within the committee to try and increase our sensitivity to the dynamics of power and privilege within a diverse organisation, and of how language may perpetuate these.  This has seemed an important task for an organisation which has as a core aim of bringing together different perspectives.

Akiko Hart was co-opted as a new trustee in July 2017 and was confirmed as Chair at the AGM. We are immensely grateful to Alison Summers who finished her four year term of office as Chair.  In accordance with our new CIO constitution, a quarter of our trustees will now stand down from the committee each year.  This autumn we are very sorry to be saying goodbye to Ann Scott, Neil Thomas, Cathy English, Angela Drizi and Judith Varley, and would like to thank them for everything they have done for ISPS UK.   Additional trustees will be appointed following an internal assessment of the Committee’s skills.

London Event: Placing Psychosocial Approaches to Psychosis at the Heart of the NHS

On Monday 13th November, we held an evening of discussion and reflection on the challenges of placing pscyhosocial approaches to psychosis at the heart of the NHS.

Our guest panel featured ISPS UK Committee Members John Read and Neil Caton as well as founder of Drayton Park Crisis House founder Shirley McNichols. Over 50 people joined us in the Rotunda Room in Blackfriars Living Space, including many from the ISPS UK membership.

A core aim of ISPS UK is to promote social and psychological approaches to psychosis – yet in a culture of increasing cuts and short term fixes, this is no easy task. We discussed some of these tensions and challenges, as well some practical steps we can all take to address them.

Liverpool Declaration

Making Real Change Happen

This conference is driven by our belief that fundamental change is needed if people who experience psychosis are to have their psychological and social care needs met adequately. The following statement, our ‘Liverpool Declaration’ sets out our beliefs about the kind of changes that are needed.  Individuals who would like to express support, please pledge support by going to the conference website www.isps2017uk.org and clicking on the link on the home page ‘Making Real Change Happen’

ISPS Liverpool Declaration

We share a number of core principles and positions:
The nature of psychosis: We believe that the current paradigm in understanding the causes and nature of psychosis focuses too much on biological perspectives and not enough on social and psychological perspectives. Social and psychological experiences continue to be viewed as simply ‘triggering’ underlying disease processes, a perspective no longer supported by research. We believe that the time has come to reverse the balance – which we believe will lead to a fuller and more accurate understanding of these conditions. A more accurate understanding of the causes and nature of psychosis will be found by emphasizing psychological and social perspectives, while not ignoring biological perspectives

The treatment of psychosis:  We believe that the preferred treatment of psychosis should be social and psychological interventions, with biological interventions (including medications) used sparingly,. There is now strong evidence for the efficacy of non-medical interventions, which should always be a part of every treatment plan for a person diagnosed with a psychotic disorder
Prevention of psychosis: We believe that the most efficient and cost-effective means of reducing or preventing psychosis would be to develop programs to help families and societies raise their young children, to minimize the adverse experiences that are now clearly related to the development of psychosis.

The role of the person diagnosed: We believe that individuals diagnosed with psychotic disorders (or any other mental disorder) are no less a person and no less deserving of respect than those not given a diagnosis. They, and their family (if supportive), must be as involved as much as possible in decisions about their treatment. Collaboration should be the hallmark of any approach, and persons should be offered as much choice as possible about how best to deal with the problems they are experiencing.

Political and social action: On the basis of these positions, we commit to advocate for more social and psychological approaches to the psychoses, and to increasing the public and professional understanding of psychosis as being largely a response to life experiences. We commit to advocate to government agencies for this to happen, to support research consistent with this perspective, and to use media and respond to media stories when appropriate. We support the increasing expectation of at least parity with physical health in the provision of resources for mental health disorders and for research.  Resources for psychosocial interventions should be proportionate to the evidence base for their effectiveness.

We hope that the implementation of these principles could lead to a paradigm shift in the treatment and understanding of those among us who experience psychotic symptoms or who are diagnosed with psychotic disorders.

ISPS, July 2017.