It's almost two years ago now since Jan Rogers wrote about her experience as a member of the Expert Reference Group reviewing the Mental Health Act (1983) - Code of Practice in England.
Janet Rogers is a volunteer and trustee at Ponthafren Association.
Ponthafren provides a unique blend of services to address the mental health needs of its members and the citizens of Montgomeryshire in North Powys.
Within the core funded service, Ponthafren has developed two main centres in Montgomeryshire, at Newtown and Welshpool, with a satellite provision in Llanidloes in the form of a group which meets weekly on a Thursday. The centres provide a drop-in facility that gives people experiencing mental health difficulties opportunities to find: a ‘safe place’, peer support, crisis support, and access to a wide range of learning and work related opportunities.
The service provides a Wellness, Learning and Recovery Centre which enables people with mental health problems, families, carers, staff from mental health service providers and people from partner agencies to attend courses. The ethos of these centres is that they are open to everyone and we do not turn away anyone who has an interest in attending. Mental health issues can affect us all at any time; it’s about being able to support people in whatever way they want, at whatever stage of their recovery journey they are at.
In addition to the core service, Ponthafren has developed a range of services including: counselling, outreach support, 1:1 personal support & planning scheme, health and wellbeing, and a young persons' initiative.
Jan Rogers said: “I must admit it was completely unexpected! I’m honoured to be getting an MBE and very grateful to the person who nominated me. I’m passionate about mental health and getting people's voices heard, because it allows me to make a positive difference to people’s lives. The MBE is for the work I did on The Expert Reference Group, headed by Dr Nicola Guy. We met at the head office of the Department of Health in London, this was over a period of about 14 months. The group consisted of people who used services and carers. We reviewed parts of the Mental Health Code of Practice of England.
"Having experienced mental health issues for a long time, it was a journey within my recovery that I will never forget. I was very honoured to have been chosen to sit on the group. The way that it came about was - I started volunteering at Ponthafren Association, with the PR group, took an information stall along to a Powys Association of Voluntary Organisations event, from there gave talks to Dyfed Powys Police and other front line services and PAVO put my name forward for the EXPERT REFERENCE GROUP’’.
Peter Bayliss, Chairperson of the Association said: “We are all immensely proud of Jan, her contribution to Ponthafren Association, and the success and significance of her charitable work is inspiring. Importantly, she is a fantastic role model for the next generation, showing clearly how what we do can have a tangible impact on people’s lives.”
Huge congratulations to Jan from all of us here in the mental health team at PAVO!
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.
We are often asked how people can use their own experiences to influence change – whether that be in the way mental health services are provided in Powys or indeed the laws which govern how people experiencing mental distress are treated in Wales and even the UK as a whole.
Recently, two perfect examples of exactly how this is happening came to light, and we thought it would be useful to share these with a wider audience. Hopefully the experiences of these two Powys residents will not only influence future change, but also inspire others to come forward and volunteer to contribute. The more voices we hear the better!
Our role in the mental health team at PAVO is to ensure that these voices are well and truly heard by people in the position to do something with what they hear. Powys Teaching Health Board fund PAVO to do this participation work and my colleague Freda Lacey, Participation Officer in our team, has played a pivotal role in this work.
So, to the two local people concerned, Jan and Rhydian. Freda updated me about their two ground-breaking roles:
“Jan Rogers and Rhydian Parry gained membership on two key executive committees linked to Welsh and English government movements for change.
Jan is the only Welsh member reviewing the Mental Health Code of Practice in England. This work is being led by the Department of Health and backed by the Minister for Health, Norman Lamb.
Rhydian is the youngest Welsh speaking member of the prestigious National Mental Health Partnership Board, implementing the Mental Health (Wales) Measure. This engagement work is endorsed by Mark Drakeford, Minister for Health and Social Care.
The changes being proposed will have wide reaching impact for other citizens across both countries.”
Jan Rogers - Newtown
Jan has been a trustee at Ponthafren Association for many years and has won awards for her extensive volunteering contribution. Her work as a member of the Expert Reference Group reviewing the Mental Health Code of Practice has enabled her to meet with people directly affected by the “Winterbourne View” which is an underlying part of the review. In helping shape the new code of practice, which will be published shortly, Jan has voiced her views on the following areas:
- Restraint.
- “Sectioning” by the Police and how detention takes place.
- How the Mental Health Act could work better with the Mental Health Capacity Act around deprivation of liberty issues.
Dr. Nicola Guy, Department of Health, said:
“I was really interested and impressed by Jan’s contributions in the meetings and very grateful that she was prepared to be so open about her experiences. Her cross border insights have been particularly useful as a Powys resident, who sometimes has had to receive services in Shropshire.”
Rhydian Parry - Brecon
Rhydian recently wrote about his experience volunteering with Powys Patients Council – Life on the ward: the patient’s voice. He underwent a rigorous selection process to be chosen as one of only four individuals (with lived experience of mental distress) to sit on both the National Mental Health Partnership Board, and the Local Mental Health Partnership Board in Powys. You can read more about the process of his selection last Autumn in Freda’s post Citizen Power, Active Participation.
The National Mental Health Partnership Board is responsible for implementing the “Together for Mental Health” strategy across Wales. It is multi-agency, multi-disciplinary and involves a range of public bodies and voluntary sector services, for instance, housing, education, health and social care. Its aim is to drive an holistic strategy for mental health for the citizens of Wales over the next three years.
Siân Richards, Strategy Lead for Mental Health and Vulnerable Groups Division of the Welsh Government said:
“We are delighted to have Rhydian as a crucial member of the Board, particularly with his unique insights as a young person having to transition into adult mental health services, his Welsh speaking skills, and his experiences of being detained and restrained under the Mental Health Act. He clearly has a strong desire to represent the voice of people who are in receipt of mental health services and his contribution to the Board is invaluable”.
Carol Shillabeer, Chair of the Powys Partnership Board, said:
“It is really valuable to have Rhydian and the other individual representatives on our local partnership board as their insights, guidance and critiques are helping us drive changes in Powys Mental Health Services which ensure that “service users and carers” are at the very heart of the services we commission.”
Some of the immediate results of Jan and Rhydian’s active participation:
- PAVO has been invited to help ensure that Jan and others are invited to be part of the Welsh Mental Health Code of Practice Review that Minister Mark Drakeford has recently announced.
- Rhydian is being invited to participate in key National and Regional Police initiatives looking at how people are handled by the Police whilst experiencing mental distress.
Want to know more about these initiatives and citizen engagement? Just ask your question below, or contact Freda by emailing Freda.Lacey@pavo.org.uk or call 01597 822191.
