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.

Volunteering while getting benefits

The title of this blog post is also the title of a UK government guide which can be downloaded from the internet here. Quite simply it lays down the rules around volunteering whilst on benefits:

"If you’re getting State benefits, you can be a volunteer and, in nearly all cases, your benefits will not be affected. However, there are some cases where your benefits can be affected, for example, if you get a subsistence allowance or if you’re doing what someone else would normally be paid for."

And yet people who are receiving benefits are sometimes made to feel – by society, by people they know, by workers at the Job Centres they attend - that if they are able to volunteer then of course, they should also be able to work.

Jan Rogers receives benefits and volunteers for the mental health charity Ponthafren Association at the organisation’s centre in Newtown. She is not in paid employment at this time. She wanted to share with a wider audience the value of volunteering to her.

Without going into detail of what, why and where, I will just say, when I first became unwell, I could see NO way out. Well, in fact, I did find a way out and that was to end “it”. To put a stop to the hassle and grief I was causing to my family.

Sometimes I think I functioned quite well in the sense that food was always on the table and the house and children were always clean, at least when they left the house. But I wasn’t living, it was existing - going through the motions. When my husband was in work I would quickly do housework and what I needed to do and then hide. Sometimes I would lie under the bed all day watching the clock so that I would be out in time to cook tea and pick the children up. This was harder when I had younger children so I used to draw the curtains and sit and interact with the children hoping that they would not pick up on how I was feeling. This worked for a few years but every time one of the children called me “Mum” I cringed.

One day Hell had just opened its doors. I went from a person who was out going and enjoyed life to almost becoming a recluse. Although I made sure the children and hubby were fed and looked after, I was sinking into a dark, dark world. I did not bathe or eat until I was so light headed I couldn’t function. My husband gave up his job and although he was amazing he was looking for answers to the complete change in a person, which to him had happened “moreorless overnight”.

I was regularly taken to hospital and sectioned and stays varied from one to three months in the early days. As time went on, with my husband’s and family’s support, and the help of the Community Mental Health Team, I was able to function slightly better, but each day was a struggle for us all. Sometimes I would leave the house and seem and feel okay, drop the children off at school but then, a dark cloud would surround me and I had no idea where I was or who I was. My husband would phone the police after looking, sometimes all night, and I would be back in hospital on a section.

I felt my life was over and although I was lucky in a sense that I had a great supporting family, this in one way was making me feel more guilty as I was letting them down and just causing more grief to the people that were at my side and holding me up. 

Jan in the garden at Ponthafren

All I kept thinking was why, why, why?

About six or seven years ago, I took my youngest sons to football practice. I was standing on my own, not really wanting to get into a conversation with people. There was a woman there, who I did not know, she seemed to be in charge of the football sessions. I remember the day well as it was windy, cold and raining, real football weather. The lady came across and introduced her self as Nicky Morris and explained that she was chair of the junior football club, Newtown Whitestars.

We got chatting and this was the first time I had really trusted anybody outside my family. I felt I could talk to her as if I had known her for a lifetime. Nicky went on to explain that she was Co-ordinator of Ponthafren Association , which was a registered charity for people with mental health problems. She suggested I pop in for a chat and see what Ponthafren had to offer for me. I was always very much into my sport, gym and running as well as a very keen gardener.

I went along to Ponthafren with my hubby and met up with Nicky and Jane and chatted. I said I would love to come along to the centre but needed a purpose. Nicky suggested volunteering for a couple of hours a week to go along with people to the gym. So, this is what I did. Mike was always outside at least half an hour before I was due to be picked up as he was very worried.

Over quite some time, I was volunteering more hours and even though some days I would not go in as I was feeling unwell, generally I felt a small sense of achievement. As time went on Mike was feeling more relaxed and able to take a step back. He too then became a volunteer at Pont. I think we sometimes forget about the person that has cared and carried someone with mental health illness for such a long time and almost expect them to pick up where they left off in a sense. This is not reality as when Mike gave up his job he gave up his “Life”, in the sense of friends, associates and a social life.

At Ponthafren I can be myself, I don’t have to pretend at all. If I want to smile I can, but at the same time if I don’t feel like smiling or putting on a face for people, then I don’t feel like I have to.

Some of the things I deal with every day and night:

• Sense of worthlessness.
• Scrounger to society/tax payers as I should be working.
• Sense of letting my family and friends down.
• Voices.
• Hallucinations, to the degree of bathing in shorts and tee shirt and dressing inside a large robe that is zipped up the front, from my neck to the floor. 
• Not sure if I’m having a conversation with real people or not.

Some of the things I feel and have partly gained by volunteering are:

• Self worth.
• Confidence.
• Self-belief.
• Passion for believing in my principles and beliefs and the fact that they do count.
• Helping my family understand my “illness”.
• Helping “ME” understand my “illness”.
• Being “Who” I am, and most of the time thinking, “others will have to accept me as is”.

I have been nominated and won awards but although I am very grateful for being put forward and gaining these awards I personally (it has taken me years to accept praise and to be honest, deep down, I still cringe even though I smile) feel that these awards I accept are on behalf of every volunteer I know. This, I feel, is how I am able to accept them.

Why do I volunteer?

At the moment I don’t think I would be able to cope with employment. I’m not sure it would be fair on an employer or me. I have never and never will be happy with myself drawing benefits but volunteering goes some way for me to prove my worth to Government, Job Centre, tax payers. I have received, and continue to do so, so much help from Ponthafren – and this is one thing I can do to part pay back for all I receive.

I volunteer in the garden because I am a keen gardener and others get so much out of the garden at Ponthafren. Some people have no garden or in fact a seating area. With volunteering, if somebody asks me to do something, I do not have a problem asking them to write it down if I’m not sure what they said and they don’t mind doing this. As an employee, this would not be okay.

Basically I volunteer because I can. I have failed so much over the years, in most aspects of my life. Volunteering, I feel I do not fail at all. Maybe I can make a difference to someone else!!!!

‘Volunteering’ = Coping , Living, Surviving, so really it is NOT Volunteering in my Mind or Heart !!!!!!

Thank you, Jan, for sharing your volunteering story with us. If you would like to find out more about volunteering, contact the Powys Volunteer Centre which is managed by Powys Association of Voluntary Organisations.

Are you on benefits? Do you volunteer? Tell us about your experiences in the comments box below.

Man to Man - let's talk

Mike Buckley, who lives in Radnorshire, tells us more about the mens’ group which he organises which meets monthly in Llandrindod Wells.

Why did you decide to start the Man to Man group?
Men tend to find it more difficult to talk about the issues which they encounter in life. The group was formed to provide a place where men can be themselves fully without fear of being judged and to discuss things like anxiety, shame, self worth as well as happiness and joy.

What has been the response to the meetings so far?
Only a few people attend so far and I think it will grow by word of mouth. Those that have come to the first three meetings have responded in a really heartfelt way. One person went away after a meeting and wrote a piece describing an encounter in his past, which we then discussed at the next meeting.

Who can join the group?
Any males over 18. Anyone who wants to drop in. There is no course as such so someone can join at any stage.

When is your next meeting?
Our next meeting is on Thursday 30th January from 7.00 to 8.30 at The Court, Lant Avenue, Llandrindod Wells, LD1 5HY.

Tell us a bit about what will happen at the meeting
At this meeting there will be two ten minute periods of sitting in silence with guidance. The topic for the evening is identity. We will explore who we think we are and from where we derive our sense of identity. This will include looking at areas where our sense of self comes under question and how that makes us feel.

What plans do you have for future meetings?
The January meeting is the beginning place for a discussion which will span the next few meetings. We will go on to look at the viewpoint from which we look out at life and discuss how we come to hold our opinions and attitudes. We could for example look at what happens in an argument where two people disagree about any given thing. The group will be asked to consider whether the story about who 'I' am is completely related to the past and to a life story, and what happens to this 'I' in the present moment.

The value of all this will hopefully be felt when the discussion spills into the sense of self-worth, which is a topic we have already heard in the group. It is central to how a person feels about themselves and most people doubt their value to some degree or other.

At the next meeting we will also listen to about 10 minutes of a talk by Eckhart Tolle which neatly addresses the above points.

If people want to find out more, who can they contact?
People can call me on 07866 497 604.

Thanks Mike, for telling us more about the group. If you have ever been along to a men's group either in Powys or elsewhere, let us know your experiences.

Look out for dates of future meetings on our website here.

Hope blooms out of depression

Last week my sister-in-law told us that she had successfully completed Level 2 of a creative floristry qualification, and she spoke so passionately about the impact that learning her new skill had had on her wellbeing that I asked her to write a piece for the blog. Thank you Linda! 

"I first started suffering from depression when I was 17. I feel the reason for this was partly genetic and also the fact that I was developing a tumour on my pituitary gland which was not diagnosed until I was 24. I am from the generation where educating girls was not a priority. All that was expected of me was to get married and have babies! My last 2 years at school were not happy - my older brother went to the same school and also my very gifted cousin who is a concert pianist. I was constantly compared to them both. 

I grew up feeling I was not particularly good at anything despite knitting and doing crochet for Harrods and Browns. I knew I had to be perfect but due to my total lack of self esteem I took no pride in the fact and felt so what, anyone can knit or crochet! These feelings stayed with me most of my life and I suffered some very severe bouts of depression that meant I needed to be hospitalised.

I was told my handwriting was nice. I could write poetry. I have bought up two children who are nice stable adults but still my lack of self worth persisted. I constantly compared myself to other people - they were all more intelligent than I was, they were nicer than I was etc etc etc!

In October 2011 my husband paid for me to do a flower arranging course for my birthday. This was something I had wanted to do for at least 30 years but there again my negative attitude stopped me. My first college lesson fell on my birthday and to say I was terrified of going is putting it very mildly. I begged my husband not to make me go, and he actually had to take me and it was just like my first day at school. I loved it once I started.

At the end of the six weeks I was really sad that the course had ended although I still felt I was not particularly good at it. My tutor asked me to stay behind after the last lesson and told me they were now taking Disability Living Allowance as a benefit and why didn't I enrol on a qualification course. My answer I remember was "what, me?"

I have a very complex medical history and am in a lot of pain but my tutor convinced me that she would help me as much as I needed. I enrolled in September 2012 at level 1 in NAFAS (National Association of Flower Arrangement Societies) qualification in creative floristry and my Thursday at college, although I found it difficult pain wise, soon became the best day of my week. I passed my Level 1 at Christmas 2012 and to my utter surprise people were actually wanting to buy my Christmas wreaths! My final level 1 assessment was a hand tie for a bride with white roses and tiny pearl beads bound with antique lace and secured with pearls. I achieved a grade 3 - the highest grade! Way hay! I thought to myself I can actually do this.

The course involves a massive amount of course work and I hated studying at 18 let alone at 60 but I have come to enjoy the business side of floristry. I embarked on level 2 in January 2013 and finish at the end of June. It has become very challenging now, both the practical and theory tests my brain somewhat. I had my practical assessment for level 2 last Thursday and chose to create a heart shaped wreath and passed at the highest grade again. The comments that were made on my practical work were that it was highly saleable and showed a high standard of creative talent. This is me I thought, I am now qualified enough to work in a florist’s and beginning to get more orders from family and friends. I love selecting my flowers, and I know my colour co-ordination is good (yes, I did say good!) and I love seeing what I can create from them.

Not only do I love my floristry it has made me look at all the other gifts I have been given. I believe that not many people are creative enough to work for Harrods. I am a nice, reasonably intelligent person who dresses well and am quite articulate. It is never too late to follow your dream whatever the obstacles you may have on the way. There is always a way around things!"