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.
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.
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.
Great post. This article is really very informative and effective. I think its must be helpful for our health. Thanks for sharing your nice post .
ReplyDeletedisable people
famous disabled people
Thank you. It does help but it has to be your personal choice and I think as long as I/others remember , things are changing for the better but it will take time. I do believe that everyone can gain from listening to all sides. Professionals >Lived experience & Lived experience > Professionals = 360 degree vision ?.
DeleteSuperb reflection on how engagement can be positive if done right. Stuart Burge-Jones
ReplyDeleteThank you for your comment , I totally agree. It really does make a difference when done right. Got to say though that I feel time and time again that myself and others are being heard and acted upon, not just "listened" to ! . This is absolutely brilliant and as I have said it does work both ways.
DeleteRemarkably honest account Jan, which will be a big step in improving the knowledge of those who do not understand. Your sentence "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."
ReplyDeleteHow understanding YOU ARE in appreciating the problems faced by people who have not encountered these issues before.
I hope that people who are suffering as you do, have an opportunity to read your article, and take some comfort in the fact that you have helped raise this issue with The Expert Reference Group.
Thank you Ken, To be honest I spent years trying to work "IT" out and still I'm trying to understand more, so I feel that the more everyone is honest and shares their opinions and views & Lived experience, is the only way to go at least someway for people to understand. Only by doing this can anyone expect professionals or anyone else for that matter to understand and help when also what help is needed. It is unbelievable how many people have spoken to me about this blog and others and said they had "NO IDEA that I suffered mental health problems". This also is why people/professionals probably struggle to understand as sometimes, What you see on outside isn't always what's underneath and in fact what you see and hear is not always what another person does!
ReplyDeleteLast year Jan contributed to many months of work on updating the new Mental Health Code of Practice (for England) with the Expert Reference Group as described above. The new Code has now been published. You can find further information and a link to the new Code here.
ReplyDelete