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