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.

Nothing like a broken leg

Dear Mental Health Carers and Supporters,

Please would you take the time to read the article below– I was moved to tears when I read it – what do you think?

Best wishes
Irene
Irene Harris – Chair – Mental Health Carers Group Stockport Tel : 07977 606 543

“It’s nothing like a broken leg”: why I’m done with the mental health conversation
On Sunday, one of our members sent me the link below, to this “un-put-down-able” article from the Guardian written by a renowned journalist, Hannah Jane Parkinson, who has suffered from mental illness since the age of 13, she’s now 28. And please don’t tell me not to use the word “suffered”, or I will use another word – remember as a mental health carer, I see my loved ones suffer most of the time and will probably do so until I die – worried sick about what will happen to them when I’m gone.
https://www.theguardian.com/…/nothing-like-broken-leg-menta…
The article is very long – 7 pages – so it’s probably best for me just to copy here the excellent points which she makes (from experience and understanding) and just to say that they agree with what we have been trying to say (but not as eloquently) in the Mental Health Carers Group Stockport for the past 7 years:
1. Mental Ill health should not be treated as a “One size fits all”
2. We need more staff and more specialist staff who know what they’re doing and are hungry to learn more.
My heart breaks when I read the ending of the article, I think of my son when Hannah says, “Because more than talking about it, I want to get better. I want to live.”
I’ll hand over to the eloquent Hannah Jane – but do please read the whole article as well and let us know your thoughts.
Thank you Irene MHCGS
In the last few years I have observed a transformation in the way we talk about mental health, watched as depression and anxiety went from unspoken things to ubiquitous hashtags. It seems as though every week is now some kind of Mental Health Awareness Week, in which we should wear a specific colour (although this year no one could agree on which: half wore green, half yellow).
In the last few years I have lost count of the times mental illness has been compared to a broken leg. Mental illness is nothing like a broken leg.
In fairness, I have never broken my leg. Maybe having a broken leg does cause you to lash out at friends, undergo a sudden, terrifying shift in politics and personality, or lead to time slipping away like a Dali clock. Maybe a broken leg makes you doubt what you see in the mirror, or makes you high enough to mistake car bonnets for stepping stones (difficult, with a broken leg) and a thousand other things.
Oh, I know how it’s meant. The lack of stigma should be the same as telling people why your limb is in a cast. But you can’t just put someone with a broken leg and an insane person side by side and expect people not to be able to tell the difference, like the Winklevoss twins or, can we be truly honest, Joanna Newsom songs.
In recent years the discussion around mental health has hit the mainstream. I call it the Conversation. The Conversation is dominated by positivity and the memeification of a battle won. It isn’t a bad thing that we are all talking more about mental health; it would be silly to argue otherwise. But this does not mean it is not infuriating to come home from a secure hospital, suicidal, to a bunch of celebrity awareness-raising selfies and thousands of people saying that all you need to do is ask for help – when you’ve been asking for help and not getting it. There is a poster in my local pharmacy that exclaims, “Mental health can be complex – getting help doesn’t have to be!” Each time I see it, I want to scream.
The Conversation tends to focus on depression and anxiety, or post-traumatic stress disorder. It is less comfortable with the mental illnesses deemed more unpalatable – people who act erratically, hallucinate, have violent episodes or interpersonal instability. I don’t want to pretend that this stigma is merely a hurdle to be overcome. Stigma exists from a place of real fear, and a lack of understanding of the behavioural changes that can accompany mental illness. Episodes of illness can be frightening, frustrating, tiring and annoying for both the unwell individual and those around them.
The key isn’t to deny this, but to educate. Instagram slogans do not make it clear what depersonalisation is, for instance, and that it won’t be solved by a picture of someone walking on a beach. It’s good that Lynx deodorant teamed up with the male mental health Campaign Against Living Miserably, but is “Find Your Magic” not the most patronising slogan of all time?
The waiting. The offers of therapies that aren’t suitable because there is nothing else. (Throwing a ball of wool to one another in a circle might be helpful for some people, but it absolutely wasn’t for me. I knew it wouldn’t be. But I gave it a go.) The being matched with a therapist who, through no fault of her own, is unsuitable (you have friends in common) but who you don’t ask to change because you know there isn’t another. The 10-minute GP slots that take weeks to secure.
Even when everyone is doing their job well, and many do, the treatment of mental illness is a slog. The trial and error of finding a productive medication, or multiple medications. Multisyllabic names in packets with go-faster stripes. The implicit paradox of becoming ill and necessarily hospitalised, meaning being removed from all the things that normally help. The expense of prescription charges for lifelong conditions that (aside from in Scotland, where all prescriptions are free) are not exempt, though some physical illnesses are. The fact that, if doctors only ever see you at your worst, or in crisis, they are not getting the whole picture, which is crucial with mental illness.
How do I explain that, sometimes, I doubt the professionals know what they are doing? Or that sometimes, when I am ill – and this goes against the grain of the Conversational rules – I doubt bipolar disorder is even a thing. (Or emotionally unstable personality disorder, or body dysmorphic disorder, or adult ADHD, all terms I’ve heard used about me.)

Hannah Jane Parkinson in London last year. Photograph: courtesy of Hannah Jane Parkinson
How do I explain that it is never as simple as having this, or that? How do I tell you that it is horrible being an inpatient, because there will be people there who are crazier than you, and you do not want to be around those people? Sometimes the situation will be reversed.
When I am well, I sometimes think I will be fine for life, and want to abandon all my medication. And when I am not well, I think maybe I really am just a fuck-up, and should not be dealt with sympathetically. We don’t talk about self-stigma because, as part of the empowering new Conversation, this is also not allowed.
How do I tell you the worst part of me desperately wants you to get help but also doesn’t – because already there is not enough help and too few beds, and there is not enough to go round.
***
I am no longer under the care of a named professional to review my medication. After the sectioning and the 22-hour wait, there was a hospitalisation out of borough. Upon leaving the inpatient ward, there was a two-week stay at a crisis house (which helped), then that was it. I was ill enough to be sectioned, but well enough to have therapy discontinued. I was put on an 18-month waiting list for therapy. I called iCope, an NHS digital therapy service, but because I was on a waiting list, I was ineligible.
It took me about 16 weeks to get back to work – much longer than it should have done – because I had to clamber from a well without ropes. I would run into GP surgeries, suicidal; the receptionist said he would “pass the message on”. I sat in the consulting room, sweater over my head and howling.
Since I was sectioned, I have been hospitalised twice, once after a suicide attempt. I am still on a waiting list, a different one: this one is two years long. My friends and family simply do not understand the delay, cannot believe it when I tell them about the system. So, clearly, the Conversation isn’t as illuminating as it thinks it is.
***
I will admit that I am not well. That writing this, right now, I am not well. This will colour the writing.
But it is part of why I want to write, because another part of the problem is that we write about it when we are out the other side, better. And I understand: it’s ugly up close
The primary danger used to be glamorising. It was cool to be a bit mad. It meant you were a genius or a creative. It wasn’t just that certain mental illnesses were acceptable, but certain mental illnesses were acceptable in certain types of people: if you had a special skill or talent or architect-set cheekbones. All of this remains true. Sure, Robert Lowell, great poet. Madness excused. Amy Winehouse, voice of a goddamn goddess. We’ll allow. Kathy, 54, works at Morrisons.
But now there is also a new danger. It is “normalising”. This is meant to be a positive – as in, “What is normal, anyway?!” Which is a fair question, but I don’t think it’s the woman who crept into my inpatient room, stole the newspapers I had, found me in the lounge and ripped them up slowly in front of my eyes. I don’t think it’s me, sitting in a tiny, airless hospital room, carving my name into the wall with a ballpoint pen, with three guards for company, one of whom later tries to add me on Facebook.
We should normalise the importance of good mental health and wellbeing, of course. Normalise how important it is to look after oneself – eat well, socialise, exercise – and how beneficial it can and should be to talk and ask for help. But don’t conflate poor mental health with mental illness, even if one can lead to the other. One can have a mental illness and good mental health, and vice versa.
Don’t pathologise normal processes such as grief, or the profound sadness of a relationship breakdown, or the stress of moving house. Conversely, don’t tell me it is normal when I go from being the type of person who will offer children piggyback rides up the steepness of north London to glaring at a crying baby on a bus. Or that it is normal to blow thousands of pounds on sporadically moving house without terminating a current lease, or to send friends bizarre, pugilistic texts in the night.
The truth is: enough awareness has been raised. We – the public, the health professionals, the politicians – need to make our words and actions count for more. First, the Conversation needs to be more inclusive when it comes to rarer conditions, and to people whose voices are less loud. Second, we need to recognise that posting “stars can’t shine without darkness” on social media might piss someone off in the midst of desperation and that, actually, anxiety can be a normal reaction and is different from general anxiety disorder, a serious condition. That feeling down is not the same as depression.
Then, action. Donate to Mind; volunteer as a Samaritan. Vote for politicians who aren’t going to decimate our National Health Service or who support policies that lead to greater incidences of mental health problems (because it’s not just physical; society and environment plays its part).
What does the government need to do? Hire more staff, and then more. Enough staff to provide a service that meets individual needs. That means better working conditions and pay, and not piling all funding into a single type of therapy or care path. Clinical commissioning groups need to spend money earmarked for mental health on mental health. Prescription charges for long-term conditions should be reviewed. Funding and research must be increased.
When I am well, I am happy and popular. It is tough to type these words when I feel none of it. And sometimes when I am most well I am… boring. Boring is how I want to be all of the time. This is what I have been working towards, for 12 years now.
When friends decades older tell me off for saying that I am old, at 28, what I mean is: I haven’t achieved all the things I could have done without this illness. I should have written a book by now. I should have done so many things! All the time, I feel I am playing catch-up. Always. I worry, and most of the literature tells me, that I will have this problem for life. That it will go on, after the hashtags and the documentaries and the book deals and Princes Harry and William – while the NHS circles closer to the drain.
Maybe it’s cute now, in my 20s. But it won’t be cute later, when I am older and wearing tracksuits from 20 years ago and not in an ironic hipster way but because I no longer wash or engage with the world, and it’s like: my God, did you not get yourself together already?
When I left appointments and saw the long-term patients, walking around in hospital-issue pyjamas, dead-eyed (the kind of image of the mentally ill that has become anathema to refer to as part of the conversation, but which in some cases is accurate), four emotions rushed in: empathy, sympathy, recognition, terror. It’s one of those things you can’t really talk about with authenticity unless you’ve seen it, not really: the aurora borealis, Prince playing live and the inpatient wards.
Maybe my prognosis will look up, maybe I’ll leave it all behind. I’ve noticed a recent thing is for people to declare themselves “proud” of their mental illness. I guess I don’t understand this. It does not define me.
It’s not something that, when stable, I feel ashamed of, or that I hide. But I am not proud of it. I’d rather I didn’t have it – so I wasn’t exhausted, so I wasn’t bitter about it – despite the fact that I know some people, in all parts of the world, are infinitely worse off.
I want it gone, so that I am not dealing with it all the time, or worrying about others having to deal with it all the time. So I don’t have to read another article, or poster, about how I just need to ask for help. So that when a campaigner on Twitter says, “To anyone feeling ashamed of being depressed: there is nothing to be ashamed of. It’s illness. Like asthma or measles”, I don’t have to grit my teeth and say, actually, I am not OK, and mental illness couldn’t be less like measles. So that when someone else moans about being bored with everyone talking about mental health, and a different campaigner replies, “People with mental illness aren’t bored with it!” I don’t have to say, no, I am: I am bored with this Conversation. Because more than talking about it, I want to get better. I want to live.

About This Article

THEGUARDIAN.COM
It’s never been easier to open up – but hashtag healthcare doesn’t help people like me

Conference Invite

I have pleasure in inviting you to the event below, on behalf of Mental Health Carers Group Stockport.

Our conference is on Friday 28th September 2018, from 10am to 4pm at Stockport County Conference Centre.

We have three brilliant mental health researchers and clinicians from Oxford and Manchester Universities to talk about their work and answer questions, as well as lots of networking – so it will be even better than our last Stop Stigma with Science Conference back in 2016!

As we are a community organisation with very limited resources, we need to make a small charge to cover our conference costs. The costs indicated below are per delegate.

Large organisations (over 150 employees) £40
Small organisations (fewer than 150 employees) £20
Carers and other individuals £8

Below is the link to booking your place: there will be attendance certificates available on the day.

https://www.eventbrite.com/e/stop-stigma-with-science-2-tic…

 

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Mis Communication!

 

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This is a dialogue between the parents of a young person with a schizophrenic illness and the “professionals” – a composite of a number of “therapists”.

THEY SAID               You feel guilty.

WE SAID       We feel frustrated – our son needs help!

 

THEY SAID               Your family has a problem; your family is a mess!

WE SAID       Our son has a problem; we’re an ordinary family.  We just want to help him

 

THEY SAID               We want to show him how to live his life – to be independent.

WE SAID        He was independent, until he changed – he just can’t be like that anymore.

 

THEY SAID   How do you feel about him?  You must hate him for his behaviour towards you.

WE SAID        We would hate him, but something is wrong.  We feel concern.

 

WE SAID        Please communicate with us.  Treat us like responsible adults; not the same as a                  disturbed 16year old.

THEY SAID    Why are you criticizing us?  We are treating you as parents.

 

THEY SAID    Why do you think he tried to kill himself?  Which one of you is he trying to hurt?

WE SAID         He’s not trying to hurt either of us.  He’s unhappy because something is stopping                           him doing what he wants to do.

 

THEY SAID     We want you all to learn to live together.  You must accept his behaviour, even if                           he stays in his room all day.

WE SAID          We don’t mind if he lives with us or independently. Just find out what’s wrong                             with him, so we can all live a NORMAL life again.

 

(Diagnosed) –  MANY MONTHS LATER

THEY SAID     You are scapegoating – how were we to know he would become ill?

WE SAID          You were negligent – you wouldn’t listen when we tried to tell you of his bizarre                          symptoms.

 

THEY SAID     He has an inadequate personality.  He’ll never cope in this world.

WE SAID         He has a strong personality to have coped so well with this terrible illness and                                these distressing conditions.

 

THEY SAID    The good news is – he has not got a withdrawn personality – we know; we’ve                               observed him for two weeks.

WE SAID         He has not got a withdrawn personality – we know, we’ve loved him for sixteen                           years; it’s the illness!

 

THEY SAID    The bad news is – we can’t get rid of the voices.  We can in some cases, but not in                        his!

WE SAID        Oh God!  God help us all

 

THEY SAID    You are angry because you are under stress – learn to relax, take up a hobby.

WE SAID         We are angry because there are no decent facilities, only facile advice.                                           Anyway, who will care for him while we relax and do our hobbies?

 

THEY SAY     We will give you Community Care – stop them becoming institutionalized;                                    teach them to look after themselves.

WE SAY          He can look after himself – when he’s well.  Give us proper facilities so they                                  can have a life with dignity and purpose.

 

THEY SAY     Learn to live without stress – no “High Expressed Emotions”.

WE SAY          No-one can live life without stress.  Having nothing to do, no future is stressful.

We’re sick of this pseudo-science – subtly apportioning blame onto carers.

It’s time we had money for research into neuro-transmitters; research with PET                              scanners and cleaner drugs.

 

THEY SAY     Learn to accept it.  Come to terms with it.  Live a day at a time.

WE SAY          Learn to accept the unacceptable!  Come to terms with a life sentence, a living                               nightmare.  Live a day at a time with no future – a lifelong bereavement!

 

I wrote this in 1986 – we found that at least one cognitive therapist and one consultant were just the same in 2005 – what’s it like NOW?

 

Irene Harris-group chair

 

 

 

 

 

Education, Research and our Conference

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I think it’s plain to see from our conference overview that our group’s motivation and values are around, “one size does not fit all”, in mental health, just as in physical health.  So, in order to make a difference to “status quo”, we want to get new evidence and research “out there”.

We don’t want to argue about the “medical model” and the “social model”, but to get new research looked at and listened to by more people and in this way lobby to improve medications, treatments and also social and personal support and services for our loved ones and people with similar needs.

We don’t want arguments about “labelling” and diagnoses, just to have people hear what we are saying and to examine the science behind it and judge for themselves.

We don’t attack ideas we don’t agree with – just let them get on with it, whilst we look at research, treatments and services which make sense to us and may help some of our loved ones if we manage to persuade the funders and decision makers to give them a try and to make their efforts sustainable when they get results.

This way we also aim to improve services for people with severe, long term mental health conditions so they won’t be so severe or chronic.  So many new treatments (and not-so-new treatments) are not being tried in our area – they say because of funding or staffing problems, but we believe that it is because they have not the will or conviction to make Stockport a model of good practice in the area of mental ill health.

In this week’s (May 9th) Stockport Express one of the letters said: YOUR VIEWS

“Stockport council must surely at this point have a far reaching reputation for having less interest in public opinion that a cat does in Neuroscience”.

To be fair, I think this can be said for all those responsible for services for people with severe mental health conditions in Stockport

Irene Harris-Group Co-Ordinator

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