News & Reflections

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.

Liverpool 2017: List of parallel sessions and presentations now available!

We are pleased to announce this year’s parallel sessions during our Liverpool 2017 international conference.
The document shows both the oral presentations, followed by posters and contain the following categories:

  • Lived experience perspectives
  • Arts and arts therapies
  • Families and family therapies
  • Psychological therapies
  • Mental health services and treatments
  • Understanding psychosis: conceptual issues and empirical research
  • Society’s response to psychosis: conceptual issues and theoretical framework
  • ISPS book series authors

You can download the full document here

 

 

ISPSUK joins call for better access to psychological therapy

ISPS UK, as part of the We Need to Talk Coalition, is one of 20 leading mental health organisations calling for better access to psychological therapy.  All political parties have been urged to ensure their manifestos recognise this urgent need.  Here is the text of the press release:

20 leading mental health organisations call for better access to psychological therapy

  • Commitment to increasing access to psychological therapy for children and adults urgently needed in every party manifesto.
  • We Need To Talk also calls for shorter waiting times, better quality provision, and joined up services.
  • Despite NHS targets increasing, most people with mental health issues still can’t access therapy.

Ahead of the General Election on the 8 June 2017, We Need To Talk, a coalition of 20 mental health charities, professional organisations, Royal Colleges and service users has issued an urgent plea for more access to psychological therapies on the NHS.

We Need To Talk is calling for increased access to services and greater capacity, a maximum 28 day waiting time target, quality services  including more therapy sessions, more choice, and properly trained therapists  and joined up services to stop people getting lost between child and adult services.

The NHS target to provide psychological therapy to those with common mental health conditions is set to rise to 25 per cent by 2020 (from 15 percent), but most people still won’t be helped. Even in cases of severe mental illness, like psychosis, around half of people do not receive psychological therapy or have to wait over six and even 12 weeks to receive the care they need.

A document detailing what the coalition is specifically asking for can be found here.

Peer Supported Open Dialogue Conference 2017

March  22nd  Regents  Hall  Oxford  Street  London

The  annual  Peer  Supported  Open  Dialogue  Conference  will  be  an  even  bigger  and  better  event  than  the  preceding  conferences, since as  a  movement  we  are  growing…..

The  March  Conference  will  highlight  the  exciting  development  of  the  last  year:  the  expansion  of  Open  Dialogue  trainings.  The  NELFT (AFT  accredited  course) will  now  be relocated  and  University  based  with  a  new  tranche  of  trainees  both  NHS  employed  and  international commencing in  January  2017.

We  are  on  the  verge  of  receiving  the  grant  to  run  the  largest  Open  Dialogue  Randomised  Controlled  Trial  (RCT)  in  the  world  within  the  NHS.  The POD  teams  have  been  trained and  are  being  established  in  Kent  (KMPT)  and  the North  East  London  Foundation  Trust  (NELFT)  to provide  the  basis  for  the  research.

The  POD  Conference  will  be  run as  a  series  of  dialogues  between  clinicians  and  service  users  with  the  focus  being  on  the  core  principles  of  Open  Dialogue to  help  gain  a  clearer  understanding  of  the  tenets  of  the  model. In  the  afternoon  we  have  a  special  guest  Professor  Doug  Zeidonis  from  the  University  of  Massachusetts Medical  School who  has  led  work  on  the  fidelity  criteria  for  Open  Dialogue, with  Mary  Olsen  and  Jaakko Seikkula.

The  Conference  has  received  considerable  interest  from  commissioners,  carers,  service  users and NHS clinicians so  book  your  tickets  fast or  you  may  find  we  are  booked  out!

You can book your tickets here

Jane Hetherington