What the Mental Health Carers Group Stockport means to me
Author: mhcarers
Summer update – SMI
This is my first blog since our mini-conference in December 2022 about involvement of carers of people with SMI in their care, mental health strategies, advocacy etc.
Lots of things have happened involving our group since then: we have had two new psychiatrists from Pennine Care coming to talk to us about SMI and its effect on the person.
This has fitted in well with the work done on the Care Act Assessments done with people with SMI and the effect of the illnesses on the executive functioning on the brain.
We have worked with Stockport Healthwatch since the beginning of 2022 on a report based on written case studies our members and their family members and friends have experienced.
This report details suggestions and recommendations as to how we would like things to change in community mental health care for working age people with long-term serious mental health conditions.
The report was submitted to the Stockport Locality Committee on Wednesday 26th July. It was accepted by the members, which included decision makers from Stockport Council and Pennine Care.
At this meeting the subject of serious mental illness was discussed in relation to the One Stockport Mental Health and Wellbeing Strategy.
One of the suggestions which was put forward is that we re-examine Parity of Esteem for Mental Health.
However the definition pf Parity of Esteem which was put forward in the Govt Paper from Rhetoric to Reality in 2016 is – “ Equal access to safe and effective treatments and services as physical illnesses”.
Therefore, in order to talk about Parity of Esteem we need to be able talk about mental illness and treatments for mental illness, without being accused of labelling people etc.
So in the second part of this, (rather long) blog and my next blog, I will discuss what is being discovered now around new research, treatments and medication for these illnesses.
To start with:- below is a letter I wrote to the Guardian newspaper re an article in their paper on 12th May 2023
Dear Editor
I am writing on behalf of the mental health carers group which I Chair, to support Prof Belinda Lennox, Head of Psychiatry at the University of Oxford in her search for new and better treatments for serious mental illnesses such as “schizophrenia”.
Like Prof Lennox, we are begging for better, more evidenced treatments and medicines for people diagnosed with schizophrenia and related conditions.
On the MQ MH Research website it says: “It is thought that a combination of genetic and environmental factors can affect brain development to cause schizophrenia. Family history, some factors such as recreational drugs or even some viruses can increase the chances of developing the condition. But more research is needed”. (Jan Shaylor).
In mental health it seems to be the case that “one size fits all” and our loved ones are treated as if this life changing, serious illness is behavioural and they can control it.
Of the second-generation antipsychotics – the most recent, aripiprazole, is 19 years old and clozapine, the gold standard – it’s 38 years since it was recognised by NICE.
Of the ones in common use, these are some side effects:
drowsiness, obesity, type 2 diabetes, high cholesterol, raised lipid level – (young men developing breasts), hyper-activity, loss of inhibitions, inability to sleep.
Our loved ones must take these toxic meds. If they stop, they risk becoming severely ill again, and unable to cope with living in the community and may become a danger to themselves or others.
Carers are frightened how our loved ones will survive when we die. It is a very difficult illness to understand and our loved ones are hard to help because of their fluctuating insight into their illness, (anosognosia).
For what other illness, but SMI, would professionals state complacently that their patients die 20 years before other people?
Happy New Year 😁
I thought I’d start the New Year with a Blog about what people thought about our mini-conference last December, on the subject of Mental Health Carers’ Involvement.
My questions were:
1. What were the best things you got from our mini-conference?
2. Do you think the conference answered the question, “Where are we now with MH carer involvement?” – please say why you think this.
3. Do you think MH carers are being listened to? What would you like to see happen from 2023 onwards?
All the evaluations were positive – that it was good getting so many interesting people together. Below is a typical example:
The conference was fantastic it really was. I wasn’t able to stay online the whole time as I had other meetings, but you certainly did a great job of bringing so many guest speakers together.
I would just like to answer Q3. I really do believe that you are being listened to. I think you now need to harness the key things that came out of the conference and separate them into 3 categories.
- Things that have changed.
- ‘Proposals’ what changes are (allegedly) going to happen?
- What has not changed, but needs to?
From this breakdown you can create an action plan to follow up and find out more about each of these 3 categories.
- You can celebrate and share good practice.
- You can track the progress of ‘proposals’ (are they doing what they say they will do?)
- You can focus on areas where you feel change has not yet happened and think about how to move forward.
Really well done and I hope this helps.
This is really helpful and is probably the way forward in 2023!
I have also been asked to talk about our mini-conference at the National Triangle of Care Zoom meeting on the morning of 24th January by Matthew McKenzie, a well-known author of three books about caring: The Caring Mind, The Poetry Book of Mental Health Caring and Experiencing Mental Health Care Giving.
He has invited the CEO of Japan’s carers organisation to the meeting, who wants to know more about carer involvement in the UK.
It will be interesting to know more about Carer Involvement in Japan too!
What did you think about are conference? Do you think we’re being listened to? Are you being listened to?
Speak soon
Irene
Lead up to our Annual Conference….
I had anticipated blogging at least once a month on the lead up to our first mini-
conference on Friday 2nd December. And now it’s only two days ahead and I’m just
trying to find words – now that I have time.
Our conference is about getting people – carers/staff/service users/general public –
together to discuss views on how we can co-produce services which will support our
loved ones with long-term serious mental health conditions to have a better quality of
life in an informed, respectful way, by listening to our input. The reason they need to
listen to our input is because we have years of experience in trying to gain
understanding of and respect for, the people who we care about and their
vulnerability.
I don’t want to say a lot more because I want to Blog what we find out from the mini-
conference. It will be good to record the views of different people and examine it
thoroughly and to compare it with our own views.
I have so much I would like to say about what is missing in long-term community SMI
care as regards to recognizing the necessity of including relatives who care,
providing proper mental health assessments in the community for people needing
help and proper funding for both SMI and mental health support.
When our conference is over – we will put people’s views and recommendations on
this blog and try to get listened to.
After the mini-conference, if you would like to contribute to this blog – please send
me your views and we can include them for discussion.
Thanks so much
Irene
PS – there are people coming from all over England to our conference on Friday –
what an opportunity!!
Why I became a Public Pennine Governor
I was asked to write about my journey; but if you have lived with a child who developed schizophrenia as a teenager, as I and many of the parents in our group have, you’ll know it’s not a journey, but a roundabout.
Just like the mother in Hidden Valley Road, whose six out of her 12 children developed schizophrenia found out. They developed symptoms – throughout the years different theories and therapies and medications were developed. Different theories and therapies came and went, and when none of the medications or therapies really worked, the parent/mother blaming continued to rear its ugly head, albeit in different disguises.
Throughout the years lots of things are happening, but when you get off the roundabout, you are in exactly the same place as when you started. Basically no-on really wants to talk about serious mental illness, anti-psychotics and what really needs to be done to get some real understanding, in order to stop the suffering and waste, instead of just brushing it under the carpet.
I got involved in Pennine volunteering and staff training when Lynette Whitehead from PALS, asked for SUs and carers to join the training team doing the MH awareness part of the staff induction. PALS and the complaints department did a customer services input so that staff could know what it was like to walk a mile in our shoes. It worked really well, working together.
Although at that time my eldest son had developed schizophrenia – nightmare, tragedy – I had decided it would be too painful to talk about it.
I talked about my elder sister, I’ll call her Linda, who had a stroke when she was 49. This affected her speech (dysphasia) and some mobility. It was difficult but she worked at it, with the help of the Stroke Club. Her next stroke affected her eyesight – which was awful as she couldn’t even knit jackets for her new granddaughter.
She developed epilepsy and the medication for this made her feel drowsy and took away most of her quality of life. Her diabetes made her prone to hypos when she became delirious.
But the worst part was when her symptoms became “psychiatric” and it affected her behaviour. She lost all her inhibitions and began acting irrationally If she liked you she would be her friendly, pleasant self. If she thought you weren’t her friend, she was a different antagonistic person. Her behaviour was irrational, fluctuating.
But the most upsetting part was the way she was treated by the medical staff when she had to go into hospital to treat her diabetes. The staff never tried to help her and left it all to us. They never came to speak to us either, although they spent time with the other patients and their families.
The last time she had to go hospital to have a peg tube inserted to save her life (she now weighed 5 stones), we made all the arrangements with the diabetes consultant for her to be admitted to the assessment ward and stayed with her to keep her calm. But the ward manager took it on himself to say that she should be on the mental health ward and the surgeon refused to treat her.
Long story – short – when we, her family, attended a formal hospital meeting after her death and our successful complaint, they apologized and said they would put training in place which we could be part of about how patients with a serious mental illness and their families should be treated.
It never happened of course, but, that was why I first became involved in awareness training with Pennine Care and then much later when I moved to Stockport, with the MH Carers Local Implementation Group.
I then set up the Mental Health Carers Group Stockport which is for carers of working age people with serious long term mental illness. This was eleven years ago when my youngest son had developed schizophrenia and things had not changed enough for me.
That’s also when I became part of the Triangle of Care, working with Pennine Care – but that’s a long story.
Information Sharing and Suicide Prevention
Dear Mental Health Carers and Supporters
- I would like to share with you two pieces of really important information which I was sent before I went on holiday last week.
Just click on the relevant pink or blue link for HTML or PDF copies of:
- The SHARE resource :-
The Zero Suicide Alliance (ZSA) has produced guidance for health and social care staff on how to use the consensus statement and how to engage with patients when discussing confidentiality and consent to share information. The ZSA guidance should be read alongside the consensus statement.
Published 26 August 2021
The SHARE resource has been developed by the Zero Suicide Alliance (ZSA). It is designed to support health and social care staff on:
how to use the Department of Health and Social Care’s (DHSC) consensus statement for information sharing and suicide prevention
how to engage with patients when discussing confidentiality and consent to share information
- The DHSC consensus statement on Information sharing and suicide prevention:-
The DHSC consensus statement sets out how and when clinicians should share information about patients, within the legal framework, where this may help prevent suicide. The ZSA SHARE resource should be read alongside the consensus statement.
Published 26 August 2021
Information sharing and suicide prevention: consensus statement
HTML
Details
The statement aims to address the balance between reducing suicide risk through sharing of information, and respecting patient confidentiality.
This document replaces the original consensus statement published in 2014. The updated statement reflects the current legal position, including the implementation of the UK General Data Protection Regulation (UK GDPR).
I know I should probably put the consensus statement first, but the SHARE document is well worth reading before the consensus statement, especially the PDF version, as it brings the consensus statement to life and says what we have been saying for over 12 years now – END THE SILENCE END SUICIDE.
Intro & context – Best practice in this area will not only produce better outcomes but may also avert serious incidents and tragedy.
Confidentiality, consent & capacity explained – practitioners should routinely & frequently confirm with service users whether and how they wish their family & friends or carers to be involved in their care.
Putting this into practice – It is imperative that ALL conversations relating to consent & information sharing are fully recorded
Where consent is given, it must always be recorded & acted upon unless there is a demonstratable & recorded reason why this is not appropriate.
Consent to involve a nominated person should routinely be sought in all clinical interactions.
Capacity – As with consent, capacity should be a constant theme in service user engagement.
Public Safety – There are many instances within which information disclosure may be of public interest.
Listening to Families, Carers & Significant others – Practitioners must consider the wellbeing of families, friends and carers & their potential ability to contribute to positive service user outcomes.
Good practice checklist – the provision of general information (ie not related to a specific individual) about mental health difficulties, emotional & practical support does not breach confidentiality.
In all cases the service user should be encouraged to identify someone they trust with whom the information can be shared in order to optimise the support available to them.
It is imperative that information shared is appropriate to social , cultural and ethnic context.
Other agencies – it is essential that the triangle of Care is sustained as service users transfer between agencies & stakeholders. The efficient, timely & comprehensive communication of risk within & between agencies is essential.
Management support – Best practice in this field is often set within a fundamental change in culture which has previously fostered an excessive default to privacy in all instances, all too often to the detriment of the service user & those close to them.
I really like the way it encourages the professionals to talk with the service users about sharing information with their loved ones – pg 5 – Gaining consent creates a partnership between service users, practitioners and families/carers and is the bedrock of any Triangle of Care. Establishing trust and clear and agreed lines of communication at the outset ca often avoid difficult & tense conversations later, especially in occasions where crisis develops & risk increases.
And finally: DHSC Consensus Statement: It is also clear that the duty of confidentiality is not a justification for not listening to the views of family members & friends, who may offer insight into the individual’s state of mind or predisposing conditions which can aid care & treatment.
- I have attached a consent to share information form which you may find useful if your loved one has given verbal permission to share information with you but you have no evidence of this, which can put you in a very difficult and stressful position.
One of our members found it at Rethink Mental Illness website, which is a really good source of reliable information and resources, especially about SMI.
- One of our members sent a link to the charity – Zero Suicide Alliance – below:
Best wishes
Irene
Irene Harris – Chair – Mental Health Carers Group Stockport Tel : 07977 606 543
Mental illness is a reality – so why does ‘mental health’ get all the attention?
Mental illness is a reality – so why does ‘mental health’ get all the attention?
We talk a lot about “mental health” these days, and references to mental illness are becoming rarer. The focus is on being well. And on recovery, which is very encouraging. But not so good if you don’t actually manage to recover. Cancer services, accident and emergency departments and fracture clinics are fairly blunt about what they are addressing – but if you become mentally ill, you will usually be directed to services designed to help you with your mental health.
Does this difference in nomenclature reduce the stigma around mental illness or does it actually make it worse? There is the implication that saying mental illness out loud would be too painful, and that we cannot admit to the possibility that people might not get better. To me, it feels like denying the severity of a problem, indeed denying the existence of an illness, and I’m not sure that is right.
I would like to be very clear that I’m not rubbishing the concept of mental health here. I think …………
Please read on and I think you’ll find the article even more interesting.
The next link is to an article which has also been sent from a group member, via Mind Carer Services, about the early signs of Parkinson’s Disease being mistaken for mental illness.
This is really interesting as we know from researchers at our last conference, the link between mental illnesses and physical illnesses such as MS.
My last quote is one by Mary Milner Haffner which I found on the Facebook page of the National Alliance of Serious Mental Illness:
Denying a full continuum of coordinated psychiatric treatment and care to people living and suffering with untreated and under-treated serious mental illness is indeed the worst injustice of our time.
The neglect and criminalization of people with serious mental illness is the biggest civil rights and social justice issue of our time.
This group may be American, but how do we treat our own people with treatment resistant mental illness, as a society?
Food for thought!
Stigma is the black hole of advocacy
On 20th November I read this tweet on twitter which was sent by Stockport User Friendly Fellowship which our group supports
Stockport User Friendly Fellowship Charity 1177660 (@stockport_uff) tweeted at 5:38 p.m. on Thu, Nov 19, 2020:
We are seeing an increase of young men with severe mental illness. We make no apologies for reporting the builders near the Pyramid who we found taunting laughing at and filming someone who was clearly distressed – it’s abuse. Always report; there is no excuse.
It made me think about the link below which I was sent by another young carer in our group
https://www.facebook.com/groups/NASMI/permalink/4724704984269175/?sfnsn=scwspmo
The article says: “Stigma is the black hole of advocacy.
Until we start referring to “discrimination” as the reason for untreated serious mental illness, rather than, “stigma”, it’s unlikely that treatment and care for people with serious mental illness will ever change.
Since when can you legislate against stigma?
You can however legislate against discrimination, let’s start calling it what it is and get laws passed to prevent discrimination against treatment and care for people suffering with no-fault brain diseases.
Now! Today! Period!”
Irene
We like these viewpoints..what do you think?:)
I joined Twitter recently, and though I’m not a very good “Tweeter”, I’ve found some very interesting viewpoints which I’d like to share with you , for you to share your opinions about them:
1) WHAT ANTI-STIGMA CAMPAIGNS RISK DOING IS ALTERING THE REALITY OF MENTAL ILLNESS TO SUIT PUBLIC OPINION, RATHER THAN ALTERING PUBLIC OPINION TO SUIT THE REALITY OF MENTAL ILLNESS. George Gillett @ george_gillett
Niall Boyce @The Lancet Psych # Ox Psych 50
2) Here is an article by a doctor, who is also a patient, about continuity of care, especially relational continuity of care – quite interesting but easy to read – What do you think?
https://lindagask.com/2018/07/29/the-keeping-of-stories/
3) Do you remember the Article in the Guardian, “It’s nothing like a broken leg”, which kick started our campaign last September? Well here’s another equally hard hitting article which is just what we are finding is happening today!
Has your loved one been “rolled off”? What do you think?
Best wishes
Irene
Irene Harris – Chair – Mental Health Carers Group Stockport
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.
mhcarersgroupstockport 