A digital place for people who access services, carers, staff and partner agencies, to share ideas around care co-ordination & care planning in mental health

Reimagining Professionalism in mental health: towards co-production

Dear All

Below are some bullet point type notes relating to the final discussion at St Catherine’s on 17 February. Do let me know via email if you’d like to add anything or change anything.  It’s great that the seminar has generated much interest. Since February I’ve been contacted by a number of people/organisations who are interested in getting involved in order to take this initiative forward. More on this later.

I want to write a little here about research and co-production because it is very much an emerging paradigm. Generating knowledge co-productively challenges accepted research practices. The researcher no longer defines clear objectives but instead engages with stakeholder groups in a dialogical process. Whilst University researchers normally adopt a linear approach to research, co-production requires an expanded view of research which blurs traditional boundaries whilst being open to uncertainty and ambiguity. While some may see this approach as unfocussed, I…

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Date: 16/05/16

Time: 11.30am – 1pm

Talk: Hearing Voices…Hearing Peter

This is a unique opportunity to hear Peter Bullimore, leading expert in hearing voices. Peter is an international lecturer, research fellow and published author. He is a trustee of the Hearing Voices Network which supports people who hear voices. Their goal is to educate people about mental health and to encourage community and social support rather than following the medical model.

Peter spent ten years as a psychiatric patient enduring many bouts of severe paranoia for the voices he could hear. Through learning holistic approaches and with support of the HVN he was able to reclaim his life from the system.

This is a free event and can be booked through Eventbrite on the link below.

https://www.eventbrite.co.uk/e/hearing-voiceshearing-peter-tickets-24282938924?aff=ebrowse

How do you get back from the point of no return? This was something my community psychiatric nurse (CPN) asked me as I clawed my way back from the great depths of hell. (Trigger warning…….)

drowningAfter weeks/months of slowly drowning  in a deep black ocean and fighting against the strongest currents with weights tied to my feet I reached a point I could no longer swim. So I woke up early one Friday morning knowing that day was the day I was going to die. I’d had a plan for days maybe weeks, I’d run through it all step by step how it would play out. So I begun getting my affairs in order IE clearing my house of anything I wouldn’t want my parents uncovering once I’d gone.

A switch went in me and now all I could see was my inevitable suicide. I was defeated or at least that’s how I felt. Worn down, exhausted unable to breath I couldn’t fight any more. I had reached a place that was so dark I could no longer hold onto the comfort of my children and how much they needed me. All hope was lost as was I, there was no way of getting  back and honestly I didn’t want to. After years of battling and struggling every day to function, to be what everyone needed me to be, of containing it all when all hell was breaking loose inside and suffering a kind of despair no words can describe. I was done. I couldn’t do it any more, I wanted to be free.

Now obviously I didn’t succeed but some how reached a place where doubts crept in and wormed  their way in and I spent the following days in absolute turmoil, tortured by my own mind. Little did I know this was some how a shuffle forward. It was me or at least a part of me swimming as hard as I could with what little strength I could summons to get  back to the surface of the dark murky waters. With each stroke I inched towards the light. What was a speck, a glint through the cloudy water was slowly growing, expanding into a hazy  ball, then into a spot light high above beckoning me.

Some how a week later I took a breath!!

Without sounding too corny I felt the sun beaming down on me and I knew I wanted to be alive, I wanted to fight.

Two weeks on I’m still swimming in the same deep aerie waters but in all fairness I believe I always will be. I just hope I’m not pulled so far down again or at least not for sometime.

I’m sure most people who battle with a mental illness know what I mean and understand the feeling of forever swimming against the tide in the darkest ocean desperately trying not to drown.

So back to my original question or rather my CPN’s: how do you get back from the point of no return?

I’ve thought long and hard about this over the past week and would love to give you a quick and easy step by step answer that would enable anyone to get through it and survive with the least  amount of  suffering possible but sadly I can’t.

I have a few ideas though, the little things I believe gave me the strength to swim which I thought I may as well share (I hope I don’t sound too condescending, it is not my intent).

breatheFor me ultimately it was having someone to confide in, (for me it was my CPN)who I trusted implicitly. Someone who could and did hold my hand (metaphorically) and reassure me. To have someone that knows you as well as anyone outside yourself can and allow them to help (I know that’s not always easy). They have the wonderful advantage of not been stuck in your mind therefore can think what’s best for you with a level head but with great insight. If they know you well they will know what works and what has the potential to make things worse. They will hold hope for you until you can again and remind you of it over and over again (eventually I find it starts to go in).

Do ANYTHING at all that takes your mind off suicide for just a moment, a split second because the more you can inject these little fragments of time in to this huge black mass in your mind you give yourself a moment to breath to find a speck of strength that will somehow give you more fragments of time and those little pieces of time have the potential to grow, to build into minutes and hopefully hours. That tiny part of you musters up a little more fight to keep breathing to keep swimming, to hold on and get through.

If you imagine your mind as the blackest sky spread across the galaxy without light then through absolute determination you catch a break, that fragment of light and put it into that sky like a star. The more stars you collect the brighter it becomes and the brighter the sky the easier it is to see a way forward.

(I know believe me it’s not all so simple as to distract yourself for a few minutes and presto you’re all better but it’s about finding something, anything that makes your mind think differently just a moment to give yourself a break because I know the pain that comes with the intensity of a dark sky. For me it was the absolute simplest of things like listening to some really cheesy song and loosing myself in it for a moment or writing down something that matters to me).

Ok, I know this sounds ridiculous but it helped challenge my thoughts a little. I wrote down the things that make me smile. It could be anything from walking the dog, or playing with your kids, to a hot bath and glass of wine. I don’t know, I picked some really random things but it helped me to remember times I was happy and felt OK. That my life isn’t always so difficult or so dark. I then picked one thing off the list that I could do and did it, then another and another. It just gives you a break, I know it’s no quick fix but it can slowly help and I guess ultimately if you can do these things mindfully, it’ll help that little bit more.

bedI understand when at rock bottom you wholeheartedly believe the world would be better off without you and believe me I’m not going to say otherwise because I know you just can’t hear it but what I will say is try at least to think about the practical stuff when you’re gone and how the ones you love will cope IE I honestly believed my family, my children would be better off without me, I couldn’t see past that at all but what I did start to think of is who will pick up the pieces? Who will realistically take care of my children? Who will identify my body? Who will pay for my funeral? Etc etc these questions really upset me because I didn’t want to hurt anyone or cause them any more pain. Even though I couldn’t accept how me dying would hurt those I loved I could see how these consequences of my actions would and I couldn’t bare that.

I know it’s often said and it’s not easy to say the least but getting out of the house even for 10 minutes, get out. Staying in doors only gives you the time and space to ruminate and drive yourself crazy.

Force yourself to spend time either in person or on the phone with someone who’s company you enjoy. That distraction and break from everything can make all the difference. Just chatting aimlessly with someone about anything can help you gain some perspective. I found keeping it as light as possible avoiding “mental health” and often just listening to the other person helped me think for a short time about something else.

Spend time doing things but don’t over do it. See people if you can but don’t forget to give yourself a break, some down-time where you can process your thoughts and feelings in a constructive way.

Do the things that make you feel valid, worthy, wanted and needed that’s the glue that will stick all the millions of pieces your in back together (hopefully).

Fight to keep hold of what’s important to you this will be the driving force behind you. For me it’s not wanting to miss out on my children growing up. Not being there to protect them and keep them from harm. Above all I couldn’t bare the thought of them hating me for leaving them.At least if I’m alive and they hate me I can try make it better, I can work through it with them and change it rather than leaving them to manage that hurt, pain and anger alone.

I am fully aware none of these things are the answer nor is it a quick fix. I also appreciate these things may not help you or make much sense to you when you’re in crisis but I truly hope something somewhere does and that in the very least you could maybe try just one thing I’ve suggested and I pray it gives you I little star in your sky. Ultimately I honestly believe the more breaks in the cycle of self hate and self destruction racing round your mind consuming you the more you gain the strength to keep fighting and in turn the more you fight the more breaks you get, a real catch 22.

I hope I make sense and that maybe someone finds even a little comfort and help in the things I have said. I’m no expert but something I do know all too well is what its like to be at absolute rock bottom clawing your way back up!!!

LYPFT Planning Care Network

The Diagnostic and Statistical Manual of Mental Disorders (DSM) origins date right back to 1840 but it was really born in 1952 when it was first published as the DSM-l and featured descriptions of 106 disorders. The DSM has evolved and expanded over the years and now is the DSM 5 which was last updated in 2013. It currently holds over 250 mental disorders over 947 pages which is a long way from the 130 pages back in 1952. Even before the DSM though there have been many books, manuals, texts, guides and much speculation regarding mental illness.

The term ‘mental health’ was popularised in early 1900’s by physicians, social reformers and asylum patients but mental illness dates back hundreds of years.

Over the years it seems many people from various walks of life have had an  opinion, judgement, idea or theory about mental illness and a box to put…

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LYPFT Planning Care Network

I started writing this piece a while ago but recent events have caused me to re think things.

I am a mum to my son and have the misfortune of suffering from a long standing mental illness. Over the years I have heard, read and had to experience a lot of judgments and misconceptions around being a parent with an illness.
Frustratingly the judgments didn’t just come from fellow parents in the play ground but more often than not from professionals, medical staff.
Collectively it was becoming apparent to myself that a chuck of society had this belief that you couldn’t be a parent or at least a “good enough” one when battling with a mental illness. That you couldn’t function, care, love or keep them safe and that you were not just a “risk” to yourself but subsequently to them too.
Due to my own diagnoses of ’emotionally unstable…

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The Diagnostic and Statistical Manual of Mental Disorders (DSM) origins date right back to 1840 but it was really born in 1952 when it was first published as the DSM-l and featured descriptions of 106 disorders. The DSM has evolved and expanded over the years and now is the DSM 5 which was last updated in 2013. It currently holds over 250 mental disorders over 947 pages which is a long way from the 130 pages back in 1952. Even before the DSM though there have been many books, manuals, texts, guides and much speculation regarding mental illness.

The term ‘mental health’ was popularised in early 1900’s by physicians, social reformers and asylum patients but mental illness dates back hundreds of years.

Over the years it seems many people from various walks of life have had an  opinion, judgement, idea or theory about mental illness and a box to put you in if you or your behaviours were deemed “abnormal” or rather socially unacceptable.

From physicians, consultants, psychiatrist, psychologists to nurses, patients and basically anyone who’s anyone they’re all quick to speculate, scrutinise and label.

Our knowledge and understanding of mental illness has come a long way over the years. What’s come with this greater understanding though is a world that wants to label anything and everything. To pigeon-hole, categorise , summarise, assess and slap a name on it whether it be right or wrong, accurate or not and then sadly the name/diagnoses often sticks, wanted or not.

MariaIn the UK alone  1 in 4 people are diagnosed every year with a mental illness and over 459 million people worldwide are diagnosed with a mental illness. Unfortunately no matter how great our understanding and knowledge has become within the mental health sector as a society there is still  an overwhelming amount of stigma, discrimination and misconceptions  towards those who suffer.

Diagnosing someone with a mental illness in its self can be quite damaging and often comes with a backlash of problems. Being given a diagnoses/label can cause people to see you as this (the label) rather than you the person. Thanks to the media, which isn’t always so accurate in reflecting what having a mental illness is truly like and frequently misrepresenting mental health issues, we have a society that sees mental illness the way the media does.

It’s alarming to me how badly the media portrays mental illness. Across countless tv shows I watch horrified as characters play out in such a negative way someone suffering from some form of mental illness. More often than not these characters are aggressive, explosive, dangerous people, who have wild reckless, uncontrollable behaviours. I’ve watched widely popular  shows that describe certain diagnoses in the absolute extreme cases and will over emphasise given behaviours/characteristics. Society then  worryingly absorbs this information as in many cases it’s the only experience of mental illness they have to recall upon then they tar everyone suffering with the same discriminating brush.

This and other influences have caused me to question: is having a diagnosis helpful?

As a teenager I would scroll through countless psychology/self help books on the floor of Borders,  desperately searching for the answer. I would sit there for hours taking notes, frantically jotting down anything that remotely described how I was feeling or matched any of my disturbing thoughts. I needed to know I wasn’t alone, that I wasn’t a freak, that someone understood and more than anything what the hell was wrong with me and how I fixed it!

I knew for a long time I was different I just didn’t quite know why or how. I wanted an answer something in black and white that I could understand. I guess I hoped for a diagnosis. Much like when you don’t feel well with let’s say a tummy pain, it’s strange, unfamiliar and terribly painful. You want to know what it is. The longer it persists the more you long for an answer. You try figuring it out yourself and maybe try different remedies to ease the pain but nothing helps so you go to your doctor in hope they’ll have a diagnosis and treatment plan to follow.

Now imagine the doctor has no idea they can’t diagnose you, you are left struggling without hope of getting better because without knowing the cause  you don’t know best how to treat it and make it better.

So I longed, prayed and begged that there would be answer, a label I could stack all my crazy behind and fix it.

My relief came at 19 when on a psychiatric ward and after being assessed more times than I care to remember I was finally given my answer. The nurse from behind the reception desk announced I was ‘border line personality’, not I have it but I AM IT!! (Something I look back on with great sadness)

I had hope, a glint, that now I knew what I was/had I could begin making me feel better, be better.

Over the weeks, months that followed I read every book that explained on any level anything about this diagnosis, my diagnosis. Soon it became apparent to me it was hopeless, I was plagued. I was described over and over again as manipulative, attention seeking, aggressive, chaotic, difficult to be around and impossible to like and that services had pretty much given up on treating me or helping me feel better. So I challenged it, fought it and rejected it as much as I could. I was unwilling and unable to see that the more I fought it,  the more difficult it all became.  I had to accept it, understand it so I could begin to work with it or rather try live with it.

maria 2Now thankfully over the years I’ve realised I am not BPD but rather I battle with BPD! My illness doesn’t define me, it’s not who and what I am but rather something I struggle with every minute of everyday. I am now in a place where I know and understand what the diagnosis means to me, how it effects me and most of the time how I can live with it as painful and difficult as it maybe.

I have been able to take a step back and see these books don’t talk about me and my struggles but are an  assumption  of what someone maybe like who has the same diagnosis.

I have learnt in part how my illness can work for me ie. as a parent and become more self aware so I don’t rely upon others interpretation of what they think I should be.

All this said though I find having a diagnosis a huge detriment to me, even up to the present day.

I may have accepted my diagnosis but others certainly haven’t and as its misconstrued within society more than ever I often find myself frustrated, angered and resentful I have such a label slapped on my head.

From the beginning its caused me more pain and suffering. I have been rejected from certain services upon disclosing my diagnoses, been discriminated against and completely shunned by people in and out of services and the medical field. I have not been seen as an equal the minute I  have shared my diagnosis and been refused help on many occasions.. Even recently I was rejected from a mother and baby unit on the basis of my diagnosis even though at that time I was depressed and needed support. I am not seen as me, at face value. I am not seen as how I represent but rather as my diagnosis says I could be.

maria 3I am not offered the treatment I require in that given moment for the difficulties I am facing at that time or the issues I’m currently working through. I am seen as a diagnosis, I am lost to it, how I’m feeling at that time is irrelevant because my diagnosis or a diagnosis needs putting on me on how I’m feeling so then people can feel better about how best to treat me when in reality they just need to see me and not spend their time trying to fit me into a box so they can feel more comfortable (my current care team are certainly not included in this thankfully).

Why can we not just treat people how they are in any given moment? Fill their current needs and help them with what they need now rather than summarising, categorising, assessing , ticking boxes and labelling them often with something that’s going to be much more damaging in the long run?

I believe in part diagnosing illness is beneficial especially with some treatments plans but I also believe people shouldn’t be seen as their diagnoses and that people should be seen at face value.

Does having a diagnoses help you? Do you feel better having one or has it brought with it more pain?

LYPFT are members of the CCA and so can book places at the reduced cost…….

The Care Coordination Association

CCA april

Friday 29th April 2016, from 9.00am to 4.30pm, Leicester Racecourse

For policy makers, commissioners, managers, clinicians, administrators, people who access services and carers

The Five Year Forward View sets out a challenge to develop a more integrated approach to patient care, by considering ways of working that overcome the traditional organisational boundaries and models of care. The CCA’s 2016 Spring National Conference will bring the realistic perspective of integration and considers the opportunities and challenges this brings to service users, carers, services and commissioners. We would encourage you to join us as we focus on this important subject and hear from a range of stakeholder perspectives including Commissioner George Howard, NHS managers, clinicians and service user representatives.

Confirmed headline speakers:

  • “Integration in Mental Health Rehab”: Professor Helen Killaspy, Consultant in Rehabilitation, University College London, London

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How do you tell the difference between postal depression and what’s normal for you when you already have a long standing mental illness and is there a difference? Is depression just depression without breaking it down into categories or subcategories? Surely it’s all the same kinda hell!! Why do we need to label it further? Can’t we just say I am struggling, struggling with life full stop… Or that you are in the darkest place imaginable and can’t see a way out without having to break it down further into a long list of symptoms that will then “define” what is wrong with you. Why do we have to meet a criteria and fit in one box? Why can’t people just take it at face value which is I’m barely holding it together and I need help!!Maria 1

So allow me to explain further. I just had a baby who I couldn’t possibly love more if I tried and thankfully without a shadow of a doubt I have such an amazing bond with her and have done so from the second I held her in my arms. She brings me so much joy and warms me deep inside. I tend to all her needs and surround her with all the love, security, stability and care she requires and not through necessity but because I want to because she means the world to me.

My children are the only ones in my world right now that really make me smile and feel worth something. Sadly though I have for the past few weeks been plagued with unbearable sadness (not sure why) and fallen into a really dark place making life an uphill battle and daily struggle. I have found myself avoiding almost everyone and hiding away as people in general only make me feel worse.

Now to anyone who doesn’t know me they would say I was suffering with postnatal depression and sure enough I have many of the symptoms, often feeling guilty and unworthy etc and if I was given this diagnosis thankfully there would be a treatment path to follow which in hope would see me to recovery. Frustratingly though for those who know me also know these feelings, this pain and suffering is nothing new to me and that annoyingly I have a long standing history of feeling like this that comes in waves throughout the year. This then raises questions and a lot of unknown and frustration not only for myself but those who know me.

How can you tell the difference between postnatal depression and “normal” hell? I have been told the way to know is by looking back and thinking have I felt like this before and if so then it’s not post natal therefore no treatment plan, no medication or support groups to attend but instead to keep going!!! I’m not quite sure what I think this is or even if I’m “depressed” but what I do know is I’m struggling not with being a mother but with my self and sadly there’s no medication that will changed his.

Do you have to have difficulties with being a new mum to have postnatal depression and is postnatal depression much different from being depressed? I’m not wanting another label or to fit in a given box and I certainly don’t want another diagnosiss to add to the one I’ve already got but why do we have to, to be given answers or support?

Normalisation

Mental Health Cop

This is a guest post by Em, or @DrEm_79 from Twitter – our various discussions on there made me realise she has a lot to say that is important and relevant for police officers responding to mental health crisis incidents. I think there’s a lot going on here and much of it is contradictory: but that seems to me to be precisely the point Em is trying to make – the normalisation of the police as a de factomental health service is something to caution against and worry about

I’m giving a trigger warning, too: Em’s post contains descriptions of suicide attempts and restraint that may disconcert some who read this —

It takes eleven minutes to walk to the GP surgery, but I only made it halfway. I don’t remember deciding to die. I don’t know why I chose the wooded embankment, and I’d lost consciousness before…

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IMH Blog (Nottingham)

A few years ago, if you had said to me that I would be celebrating the publication of an academic research paper, I would have laughed. In 2007, attempting my MPhil nearly broke me, and this, amongst other life pressures, caused me to have a psychotic breakdown. I was in and out of hospital that year, and was eventually given a diagnosis of paranoid schizophrenia. That diagnosis felt like a death-sentence, and I felt hopeless about the future. My wife and kids and my faith kept me going, but my life was very different now – unpredictable psychotic episodes, plus medications that clouded my thoughts, made me feel emotionally numb and sedated.

ppi*

It was in December 2010 that a key-worker in a mental health day-centre I was attending approached me with a leaflet looking for service users and carers to be trained in research methods and design. The course…

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Fabulous idea……..

Research Dragons

logo

We are delighted to invite YOU to our very first Research Dragons’ Den!

If you are a Psychologist or Psychological Therapist, and interested in research, then this event is for YOU!

Our dragons don’t breathe fire – but they can breathe life into your research idea!

So, if you would like to talk about a research proposal (no matter how big or small!) or be part of the audience then come on over to the den.

Best of all: it’s free!

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Another excellent post; thought provoking as ever.

WRWS

I had a discussion today about how to react when people use offensive terms about mental illness or speak about someone with a mental health problem in a stigmatising way. The idea came up that a very small fraction of people mean to be offensive – the majority of people just do it through ignorance. The implication being that we should mind less when people are offensive through ignorance – they didn’t mean to do it, so we shouldn’t get upset.

Which brings me back to this point again: stigma is pervasive. It’s not just the horror movies based on mental institutions or people being called “crazy” or “nuts”. The small things can be just as devastating to someone’s life even if people didn’t mean it.

The idea that something should affect you less just because the person didn’t mean to do it doesn’t make any sense. Intent matters in…

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Here, Elaine Wilkes, Carers Education Worker writes about a new group to support people in Leeds:

I am really excited this morning along with my colleague Lokhi Roy!  We both work as part of Leeds Carers and stated a new group last night based on Mental Health Recovery!

recovery header

The group runs at Vale Circles once every two weeks from 5.30pm-7pm.  It is based on a group that has been running at Lovell Park for five years. Click here for the dates and venue details.

So why the excitement?  Well I experience depression and this is a group where anyone can come along if they have an interest in mental recovery.  This is:

  • Workers
  • People who have mental health problems
  • Carers
  • Anyone who is a combination of all the above

The group focuses on:

  • Hope that recovery can happen
  • Looking at things in a positive way
  • Knowing we experience negative things but looking at the type of things we do to overcome these

My dad died last March and I went to the Lovell Park  group  the week after his funeral.  I was ok but still at times tearful.  A member of the group mentioned railways (which my Dad loved) and I could feel myself becoming tearful.  I did not feel the need to hide the tears but talked about being upset by his death.  This led to other people talking about how they had overcome difficult things including deaths of people close to them.  I went away from that group feeling supported and more positive.  We also talked about techniques that can help all us cope at tough times

My hope for the Vale Circles Recovery Group is that we can develop a safe place where anyone feels comfortable to talk about things that are emotional and hard.  For me the key thing is we don’t stop there but focus on hope, how we can overcome pain and techniques to help all us of do this.

I don’t think it matters whether someone is a service user, carer or worker or all of these.  What matters to me is that we are people  and we all have things that are hard.  This group is about overcoming these things but also have fun and humour along the way.

If you would like further information about these sessions or to book yourself a place please contact 0113 85 54445 and ask for Elaine Wilkes or Lokhi Roy.

This is great; we can take these tips and apply to home environment and hospitals too

Let's Talk about Dementia

As an  occupational therapist working in mental health in Dumfries and Galloway I was given the opportunity to work with some of the residential care homes, exploring ways that dementia friendly design principles could be implemented to help create care spaces more suitable for people with dementia.

Dementia friendly design principles focus on ensuring that the environment is comfortable, easy to navigate our way around and that it easily engages us. It requires us to take a step back and ask some simple questions of the spaces and environments around us. The questions which I helped the care homes ask of their environment can be summarised into three themes

  1. “What do I do here?”

When I walk into any room, the space should clearly tell me what types of things I might do there, for example an ironing board, basket of laundry and an iron, a shed with a brush…

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Mental Health Cop

This is the third in a series of posts explicating the vagaries of the Police and Criminal Evidence Act 1984 (PACE) – Part One covered the general legal basis of detention in custody, the timescales for detention without charge and general principles around clinical risks and vulnerable people; Part Two covered certain specifics that will relate to many or some detainees, depending on the legal nature of their detention, including legal rights, searches, samples, reviews, decision to charge and so on. This third installment attempts to highlight how all of that relates to decisions by mental health professionals who come in to police custody at various stages and specifically to Mental Health Act (MHA) processes which often need to run in parallel to PACE.

Three things tend to be going on where detainees are in police custody interfacing with considerations under the MHA –

  • Detention in police custody as a…

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Dr Sally Pezaro

This is the research blog of Dr Sally Pezaro. Sally is 'The Academic Midwife' working to secure excellence in teaching and maternity services. Specialist interests include maternity services, workforce and midwifery research.

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