Conference Introduction

Good morning everyone and thank you so much for coming today – we have some fantastic speakers and panel members coming from throughout the UK so I know you won’t be disappointed.

I’d like to say a few words about our group and how this year’s Stop Stigma with Science conference came about.  It’s all about people.  When we started the group over six years ago with Beryl & Tony, Judy, Linda & Graham at the helm – our theme was: Why is mental health different?  Why if you care for a family member who has a heart condition you are involved with their care, and given the information you need to care for them – but in the case of mental health conditions you are excluded, on the pretext of confidentiality.  We proved with the help of Dr Gerassimos Chatzidamianos from Spectrum at Lancaster Uni that information sharing with carers done correctly has a beneficial effect on MH patients and often saves lives.

The group has continued to be passionate about this & worked with Pennine Care to make The Triangle of Care a success in Stepping Hill Hospital & we’re getting it out in the community – Thanks Gemma, Lynette, Joan, Kay S and Jan

About two years ago Kirsty Marshall and Rachel Ward from Pennine Care Research Dept came to speak to us about the new research which was taking place which was taking a different direction.  Instead of looking at the diagnosis and doing trials based with people having this diagnosis – they were going back to basics and looking at the underlying pathology – what was actually going wrong at an individual level.  If the new treatment worked for some in the trial and not for others, maybe the diagnosis was wrong and they needed different treatments.

This made sense to us as within the group we talk about how we help our loved ones, & the symptoms they have.  We had already discovered that many had similar symptoms they had to deal with such as anxiety, OCD, hoarding, mood swings and hyper-vigilance but diagnoses were completely different:- BPD, sz, Bi-polar, Autism – some people were functioning & had jobs or families, some couldn’t leave their room, let alone their home.

It made sense to us.  Throw away the DSM (Diagnostic & Statistical Manual of Mental Disorders) – what other health condition would you diagnose by looking in a medical “bible” and seeing how many behaviours they had exhibited and for how long.  Where was the evidence to say that you had increased dopamine or lower serotonin levels?  How can they measure it?  It seemed like guess work to us – why couldn’t they do blood tests to find markers and do brain scans to find out different brain activities when our loved ones were hearing voices before putting them on quite toxic medications which some of which made them very ill, before finding the one with the least side effects and some beneficial effect?

This is when our new committee Brigid, Barbara, Joan, Michelle, Vivien, Patricia, Brigitte and then Michelle B and Kay L, decided that we would prioritise finding out as much as we could about new research and trying to get it implemented up here.

Our motto- Mental illness is an illness, not a life style choice.  One size does not fit all.  No more blame for chaotic life-style or lack of engagement.  Kirsty will tell you about our campaign later this morning.  We can’t talk about the campaign without mentioning one of our members Sue Nicholson, who sadly died earlier this year.  She was the motivating voice for the start of the campaign, an ex-nurse she wanted to see more specialist services, especially for suicidal ideation and we miss her very much

Around this time we heard Professor Belinda Lennox on Dr Weston’s Case Book and Trust Me I’m a Doctor and heard her say she had at last been able to offer some hope for a small group of people with a type of psychosis called anti-body mediated psychosis.  We became groupies and the group paid me to go to Manchester Expo 2017 to hear her speak.  Not only did she do that but she actually spoke to me and when we managed to get funding for this conference – I emailed her and she actually replied and said “yes” and she has asked one of the research participants, Sarah, to co-present today

Not only that but we heard about the Spring Study that Manchester Uni had started, which was nearer home and also included people who had had psychosis for some time and was making use of the scanners in Cardiff, which are the best in Europe. And Dr Catherine Gregory also agreed to come to tell us about it today – we couldn’t believe our luck!

Then Paolo Corsico rang me after speaking to Belinda and asked if we could take part in his study of ethical & social issues around the newer neurological approaches.

Later Joan asked me to invite a member of the Liverpool Team who are doing trials around blood (DNA) testing to see which medications would be effective/ do harm for not only physical conditions but – wait for it- depression and psychosis, and Dr Vincent Yip is here today to answer questions on the panel.

But our group & our conference is not only about psychosis, as carers, one of the things which was still distressing us greatly was that when we went to Pennine’s own conferences and listened to CAMHS, the influence was always on bringing up children in a healthy way to stop them having mental health problems.  No-one mentioned the children like ours who had become very, life-changingly ill at the age of 16 and even younger and who had had all the love in the world, like their siblings.

Dr Henry Ticehurst told me about Dr Prathiba Chatsabesan’s work and again she rang me up straight away, and agreed to tell us about it today – although she did wonder how it fitted in and wondered if we should use more orthodox studies in a carers conference. But it is the parents of these young people whose behaviour is so difficult that all their parents can do is keep them safe & out of prison and they have the most difficult time of all of us to get some effective help.  And again many people blame them, though they have loved these children  like their siblings.

And so carers of young people become carers of working age people and the days become years and then decades, as Lindsey Cree will tell you in her moving “Rites of Passage” video.  And we want something better for them.  When we train the nursing staff in “Triangle of Care” sessions one of the things that usually comes up when talking about communications with carers is “unrealistic expectations”.  In the past, we would accept that – everyone wants the best for their children, but certain conditions you can’t cure – you have to “come to terms with it”.  However, things have changed and just like cancer, our loved ones should have the right to the safest most effective treatments and to go on trials if the treatment for their condition isn’t working for them – oh yes that’s true – true “parity of esteem” – what a coincidence.

Which brings us to Warren Heppolette, who as the Executive Lead for Strategy & Systems Development at Grt Manchester’s Health & Social Care Partnership, has the MH strategy for the whole of Greater Manchester under his consideration.  He has offered to work with us the whole day and consider our evidence and views and take them back with him – to share, assess and hopefully, prioritize, our research ideas.

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