Tuesday, 26 August 2014

Mental Health Act 1983 – Code of Practice: the review (in England)

Jan Rogers, who recently wrote for us about Volunteering whilst getting benefits, has been playing a key role over the last few months in the review of the Mental Health Act 1983 Code of Practice in England. This work is being led by the Department of Health and backed by the Minister for Health, Norman Lamb, you can read more about PAVO’s role in this work here

Jan was recently asked to speak about her experiences, as someone in contact with mental health services, at the Expert Reference Group reviewing the Code. With her permission we are publishing Jan’s talk as a guest blog post.

Hello, my name is Jan Rogers, I live in a small village not far from Newtown, Powys, Mid Wales. I am married and have been for nearly 36 years. I have 10 children although I did cheat a bit as my husband, Mike, had 4 children when I met and married him. Pre-1988 I lead a happy healthy “NORMAL” life. I used to do a lot of running, competitive and for fun, and also competed in a lot of different sports.

In 1988 a life changing traumatic event happened. Without going into detail, for a few years I pretended it never happened and it seemed to work but in 1992 “hell opened its trap door” and I fell in the most darkest place I had ever been.

I was diagnosed and labelled with "Post Traumatic Stress Syndrome” and depression. The reality of it all and the issues I have had to deal with, and still do, day to day – are guilt, lack of self worth, failure to family and friends and society in general (although after I was labelled I didn’t seem to have as many friends), flashbacks, voices, hallucinations (even to the extent I can’t always tell if the people I am talking to are real or not).

When I an unwell I tend to pace backwards and forwards with my fist clenched usually talking to the people that others may not see. I feel that this is the only way to keep control and to stop them taking over. In the past people, police, doctors and other professionals, have perceived me as on drugs or alcohol and mistaken my pacing and keeping control as lack of control and a possibility of turning violent. Those that know me know I am not, and never have been, violent towards anybody.

This Code will better safeguard people, carers and others that could be effected by the Code’s use. With every meeting I felt more confident in myself, maybe even talked too much sometimes, and felt confident enough to reply to emails if I wished. To be honest I’m not sure if I have had any conversations with people that possibly weren't there and still don’t. But I have never felt or been made to feel uncomfortable about the issues I deal with or pitied, only ever thanked for being honest. It has been great to be accepted for who I am. I spoke earlier about feeling like a failure to society but it’s projects like this that water this feeling down. I would like to give my personal thanks to the support I have received from Freda (Lacey), Derek (Turner) and Jane (Powell) in making it possible for me to come and take part.

Can I just say before I bore everyone too much that I really appreciate being involved in this work and even though we are playing a small part in a bigger picture I feel things are moving forward for the better. As much as our lived experience view helps professionals I also feel it’s helping me on my journey to living instead of existing.

Inspector Brian Jones of Dyfed-Powys Police asked if I would go along to a meeting and talk about how I was treated by the police when I had been arrested whilst being unwell. From here I have been involved in a lot of different projects. I have not been in hospital for two years and four months and I believe a lot of this is down to my volunteering and being involved with different projects like this.

Passing on my lived experience gives me a purpose and an outlet for the HELL I live in sometimes, along with the support I have had from the staff at Ponthafren, PAVO and the Community Mental Health Team, and last but certainly not least, my “Mountain” (my hubby and family).

When Freda asked if I would like to put my name forward with a possibility of being a part of “The Expert Reference Group”, I said yes, and when she came back a short time later and explained that I had been accepted I was excited. Then panic set in. I started thinking what if I upset people by talking to people that nobody else could see? What if I couldn’t make out who was real and who wasn’t? I have in the past while doing a card making workshop spent 10 minutes showing an empty chair how to make decoupage cards and it wasn’t till I noticed the others looking rather confused that it dawned on me. Thinking quickly I said I was practicing, now I will move on to a real person, phew, my mum always said I was born in a knife drawer.

Another thing that was going through my mind….. As I said, I have been involved and gone along to quite a few different meetings and projects, but sadly there have been a few where they said they wanted input from people who use the services but I soon realised that actually it was more that they needed to tick a box to say that they had input from us. And I really felt as if I was invisible.

Between 1992 and now I have been arrested under the Mental Health Act and held on a Section 136 over 30 times. Every time I have ended up on a section and taken to hospital. I have been pepper sprayed, thrown in the back of a police van in a cage, held down in handcuffs over a wall, while the police officers spoke to their sergeant over the radio as to where they could take me (as the police have always thought that a cell is not the best place for people suffering mental health issues), stripped of my clothes in a police cell, bearing in mind to me the cell had between 15 and 25 people in it at any one time….

All this I believe was because of a lack of training and being unsure of what exactly to do with people struggling with mental health issues. Sometimes even a lack of understanding. It would have been interesting if any of the officers involved took any advice from the Mental Health Code of Practice! On the other hand when it has been officers that have known me, things were very different. They allowed me to pace instead of being forced and held down, spoke quietly and at a distance and even allowed me to have a fag.

After years of being in and out of hospital, cutting a long story short, I came into contact with Ponthafren Association, which is a resource centre for people with mental health issues or those that feel lonely or isolated. Through doing volunteering there and becoming part of the public relations group, I met Freda Lacey a lady that works for PAVO, (Powys Agency for Voluntary Organisations). Through Freda and PAVO I met Inspector Brian Jones from Dyfed-Powys Police force who chairs the Confidence and Equality Group meetings in Llandrindod Wells every quarter. There are representatives from several front line organisations.

Also maybe in some people’s eyes a serious problem, I listen constantly in one ear to 60s music as I found it’s the only way I can listen to a conversation with a real person as it quietens the voices a bit and helps me concentrate.

I remember the first time I came down to the Expert Reference Group, my stomach churning and brain spinning and the voices and extra people were worse than they had been for a while. When we all introduced ourselves and I explained the issues I deal with, voices etc, straight away I felt accepted for who I am - lock stock and barrel - and this meant so much to me it’s unexplainable in words really.

Well! From the time I got there it has been an extraordinary journey, from everyone’s attitude, explaining what it is all about, directions, travel and follow-on emails about the previous meetings, and future agendas. The meetings and discussions felt like they flowed, we all were able to give and were asked for our views. When the Minister and other professionals came along to some of the meetings, I felt it went well as we were all able to have a wider view of things. It felt so easy to put my point of view across and I personally felt very much listened to. To be able to play a small part in reviewing the Mental Health Code of Practice for England is unbelievable and a great personal journey and already leading to other things.

I feel I have learnt so much as when I first looked at the Code I was totally pickled but now I feel that, albeit a small step, the Code will be much easier for people who use the services, carers, and professionals to use and understand, as I’m sure a lot of the areas which were very grey and doubled up will be more understandable.

Many thanks to Jan for sharing her experiences of the review process with us. You might also be interested to read a blog post by Aimee Wilson about her experience of reviewing the Code of Practice. She was initially approached by a Youth Engagement Worker from Young Minds and asked to get involved.

Tuesday, 19 August 2014

Unconventional Wisdom: Beyond Medical - The Debate Continues (I hope) ...

Leaving PAVO and Ventures New

After 5 years of working within PAVO’s Mental Health Team and 10 years of working in the “mental health” field, in July 2014 I decided it was time to try and make my living in a different way, one that was outside of the mental health system and outside of the public sector.

I am opening a Micropub in Llandrindod Wells which is a whole other story (… one of craft real ales, conversation, bringing people together and other lovely things …). If you are interested you can find out more on twitter, look for @arvonales.

So why I am still writing a “mental health” blog?

Some of you may already be aware of my views on our mental health system and the ideas underpinning it from my previous posts. You can find some of these here. If so, you will know that they do not align with the conventional mainstream wisdom on this topic and although I am no longer working within mental health, my quest to find ways of highlighting the “beyond medical” debate to professionals, the public, people in contact with mental health services and those close to them continues.

I believe that basing our mental health system and public awareness campaigns on the illogical idea of “mental illness” is doing much more harm than good. This belief comes from personal and professional experience of mental health and my own 30 year quest for the truth about my brother’s “mental illness”.

“Here I stand. I can do no other.” Martin Luther

What’s the debate? The myth of mental illness and the harm that it is doing

I believe that the concept of “mental illness” is incorrect and illogical. That the thoughts, feelings and actions that we categorise as “symptoms” of “mental illness” are not that. That these thoughts, feelings and actions are instead a natural and normal response to the difficult things that happen to us.

I believe that basing our mental health services, policies, laws, treatments, responses and public health campaigns on this bad idea is leading to much more harm than good. That allowing this bad idea to underpin all of these things means that we start from the wrong place when trying to help ourselves and others.

That is a place that largely remains in the “let’s manage the symptoms” arena rather than one that asks “can we make sense of this”. A place that doesn’t always allow us to look first for any medical reasons for these symptoms (you can read my blogs on organic reasons for “depression” here and “psychosis” here).

“Language shapes the way we think, and determines what we can think about.”  
Benjamin Lee Whorf

What do I propose?

Well one thing is that I commit to continuing to write blog posts that highlight “What’s Hot?” in the beyond medical debate (…What’s Hot ?!?!?! - me trying to make the topic as interesting as I can).

I will also continue to use my personal twitter account @powysmh to present evidence that shows the invalidity of the idea of “mental illness” and that highlights the harm that this idea is having.

I know that I am not the only one in Wales wanting to see awareness of this debate raised and I would love to hear from you about what you are doing and any ideas you have about what else you think we could do.

So now it is up to you. Read or don’t read the blog. Follow me on twitter. Talk to me, contact me, challenge me, offer me words of support. I leave it to you.

Beyond Medical Debate. Where would I start from now?

As this is the first of these “round-ups” I want to start by highlighting just 2 links that are in my opinion a great place to start if you want to find out more about this debate. I hope you find them interesting and useful:

The Council for Evidence-based Psychiatry (CEP)   @cep_uk
  • The purpose: To reduce psychiatric harm by communicating the latest evidence to policymakers and practitioners, by sharing the testimony of those who have been harmed, and by supporting research into areas where evidence is lacking.
  • Where to start: Try the tabs at the top for a series of short videos on “Unrecognised Facts” and “Recovery Story”. Also find out more about the members of CEP here. One member, psychiatrist Sami Timimi, talked at a conference I organised earlier this year in Powys, you can find out more about this here.
Behaviorism and Mental Health    @BigPhilHickey 

An alternative perspective on mental disorders by Philip Hickey PhD.
  • The purpose: To provide a forum where current practices and ideas in the mental health field can be critically examined and discussed.
  • Where to start: Absolutely anywhere, this is a great site for exploring this debate. On the home page you will see a list of his posts and in my opinion they are all insightful, logical, thorough and interesting. There is a Tell Your Story page here and the Moderation Policy here is well worth a read.
Beyond Medical Debate. What’s Hot This Month? 

Contact me (… fingers crossed …)? Laura Gallagher

To find out more you can follow me on twitter @powysmh.

You can comment below and I will respond.

You can email me at powysmentalhealth@gmail.com

Or find me on facebook here.

Fingers crossed that other people out there are also interested in finding out more about this this debate….

Tuesday, 5 August 2014

Introducing Mastermind - computerised CBT

Tanya Summerfield (left), an ICT (Information & Communication Technology) Project Manager at Powys teaching Health Board, is working to develop an innovative digital project to help support people experiencing depression in Powys. 

She is supported by her colleague Menna Reese (below), who is also helping to promote the roll-out of Mastermind in Powys.

We spoke to Tanya and Menna recently to find out more about Mastermind.

Tell us about your role at the health board 

To facilitate the implementation of two European Union projects, one of which is Mastermind, which is the introduction of the computerised Cognitive Behavior Therapy across Powys by November 2014.

What is the Mastermind Project?

The Mastermind Project aims to make high quality treatment for depression more widely available across Europe through the use of ICT. In Powys the software of choice is ‘Beating the Blues’ developed by Ultrasis.

What is cCBT? 
Computerised Cognitive Behavioral Therapy. 

Tell us about the Powys pilot of the Mastermind project

The pilot aims to facilitate access to cCBT through purchasing licenses and training primary care mental health staff in its application along with provision of video conferencing facilities between ‘GP and Specialist Clinician’ or ‘Specialist Clinician and patient’. 

How do you think it will benefit people who may be experiencing mental distress or be depressed?

The Programme will only be available for people with a diagnosis of low to moderate depression and the benefit will be access to the cCBT in the patient's own home at their convenience.

What is particularly innovative about the project? 

The Programme focuses on how to improve the lives of service users and their families using a recovery and enablement approach through embracing technological advances to date and minimising the need to travel to treatment centres.

Why has the health board decided to offer this type of mental health services in Powys?

In recognition of the rural terrain and the ratio of the primary mental health practitioners to the population, funding was sought through the EU to pilot the scheme prior to it becoming mainstream. In this way, we will be able to make psychological therapies more widely available.

What kind of links is the health board making with mental health services in other European countries as a result of this work, and how could this be beneficial to people in Powys?

Sharing good practice and regularly monitoring reports shared across 11 European sites, taking advantage of networking opportunities sharing experiences.

When will the Mastermind service be made available and who will be eligible to access it and how?

The time schedule identifies November 2014 as the start date and the trial will run for 17 months. Eligibility will depend on the diagnosis of low to moderate depression by the general practitioner, primary mental health clinicians or secondary mental health service.

How does the project tie in with the aims of the Together for Mental Health (Welsh Government strategy) and Powys Hearts & Minds strategy?

Poor mental health and illness have a significant impact on individuals, society and the economy overall. Together for Mental Health (Welsh Government 2012) sets out the Welsh Government's ambitions for improving the mental health service and promoting better mental health wellbeing across the whole population. This project will widen the availability of psychological therapies.

If people want to find out more about the Mastermind Project, who can they contact?

The EU Project Office on 01874 712765 or email Tanya.Summerfield@wales.nhs.uk

Thank you Tanya and Menna for introducing us to the Mastermind Project in Powys. You can find out more about the Mastermind Project on the project website here, and also join the debate on Twitter here, or tell us what you think by commenting below.