Janet Rogers is awarded an MBE in the Queen's birthday honours list

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.

This weekend I was delighted to discover that Jan had been awarded an MBE in the Queen's Birthday Honours List 2016 (page 78 of the Prime Minister's List) for her contribution as a member of this Expert Reference Group and to mental health generally. 

Nicky Morris, Ponthafren Association Manager, tells us more:

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!

Advance Statements for Crisis Planning

by Janet Rogers and Derek Turner

Possibly for the first time in history, the new Mental Health Act Code of Practice (April 2015), for England, has included a section that puts a responsibility on Mental Health Practitioners to encourage ‘patients’ to set out their wishes in advance as ‘statements’ or ‘decisions’. While advance statements are not legally binding professionals are advised that they ‘should make all practical efforts to comply with these preferences and explain to patients why their preferences have not been met.’

Within the Code Advance Decisions relate to medical treatments and should be adhered to by practitioners whenever possible, whereas Advance Statements can be used to cover a wide range of factors that might affect the life of a person who experiences difficulties as a result of their mental health, and how other people, as a result, become involved in the person’s life. This article aims to explore the rational for writing an Advance Statement to assist Practitioners in supporting a person who might experience a mental health crisis at some point in the future. The history of psychiatry has been dominated by Practitioners who have tried to design interventions that can be used to control/manage/support/treat a person whose behaviour is deemed to be ‘insane’. It may seem to some pointless, or at best counter-intuitive, to ask someone who is ‘insane’ to plan their own crises, however with some 30 years or so of learning to listen to, and learning from, people planning their own mental health recovery journey, a realisation is slowly beginning to dawn that this is the only sane way forward. The early pioneers of recovery have not only engineered fulfilling lives for themselves but have given new insights that are now at the forefront of what is considered to be ‘best practice’.

The key to ‘recovery based practice’ for Practitioners is developing a capacity to think differently about ‘how’ to use hard earned skills and expertise. Perversely it has been the drive towards ‘evidence based practice’ that has embedded a culture that suggests that ‘what’ Practitioners do is important. Interestingly it has been the Police who, in becoming increasing dissatisfied with ‘what’ they have been doing, have become open to different ways of working that are more concerned with ‘how’ they engage with the person.

More often than not it is the Police who are the front line service when a person is in crisis. The Mental Health Act gives the Police powers to ‘arrest’ the person and ‘remove’ them to a ‘place of safety’ where they can be assessed by other Practitioners. In the past this has often meant that the person has been bundled into a Police van and transported to a Police Cell. The Triage Pilot, currently being run by Dyfed-Powys Police, has already shown that the numbers of people traumatised by such an experience can be dramatically reduced by engaging with the person and their particular circumstances. The Pilot includes a follow-up visit to each person and it is here that the potential for encouraging people to write and agree their Advance Statements could potentially reduce trauma even further.

Advance Statements can be very simple agreements or more complex arrangements. An example of a very simple statement was told to me recently by a lady who has been prone to panic attacks when out shopping. These are very distressing to her and worry people who are near her. Recently a member of the public called the Police and a female Community Constable arrived. The Constable was not fazed by the situation and encouraged the lady to go with her to a local café. With a cup of tea and a bit of a chat the panic subsided. The lady was then able to tell the Constable that if she had been ‘arrested’ and taken to a Police cell she might not have been able to go out shopping again for many months as she would be fearful that this might happen again. They agreed together that a note would be put on her file saying that going to a café and having a cup of tea and a chat was the best way to deal with a situation like this if it happened again in the future. In telling this story the lady was able to say that she now felt more confident going out shopping knowing that, if she had a panic attack and the Police were called, she would be treated in the same way by any Police Constable.

Another situation involved a woman who had had many ‘arrests’ by the Police, some were very traumatic and others were less so. In talking things over with an advocate this woman was very clear why some Police Officers found her very difficult to manage while others treated her as a member of the community who needed some support to get through the current crisis. In trying to manage her distress she needed to move around and she would be aware that her fists were clenched. Police Officers who did not know her often interpreted this behaviour as aggressive while those who knew her allowed her space to work things through. Police Officers were often at a loss to know what to do with her as her thoughts made no sense to them at all. As a consequence she frequently found herself bundled into a van and transported for anything up to 2 hours in order to be assessed by other mental health Practitioners. The woman understood why the Police behaved this way but she was keen to write an Advance Statement that, if agreed, might mean that she could manage the crisis with the help and support of the Police and other important people. She knew that the person who would have the most calming effect on her behaviour was her husband. He was prepared and willing to be contacted by the Police and to come at short notice. She had this agreement with her husband already and so she needed the Police to agree to make the phone call when required. She also recognised that she sometimes needed a ‘place of safety’ but travelling long distances was very difficult for her and her family. She needed a separate agreement with her local Community Mental Health Team if she was to be able to use one of their rooms to fulfil this purpose.

It can be seen from this example how a range of other factors might need to be considered. Each of these may require separate agreements with the people involved if the Advanced Statement is to have the desired outcome.

Even with the full support of the Code of Practice the introduction of Advance Statements is likely to be slow. There are several reasons for this:

• Trust is probably the biggest factor for most people. Survival in the mental health system has, for many people, been closely linked to keeping Practitioners in the dark about the reality of their mental health systems.
• There is a more general scepticism in society about voluntarily sharing personal information with the Police.
• Another survival strategy that many people use is denial: “It won’t happen again.”
• There are currently no support systems in place to help people to make an Advanced Statement.

Developing a culture where people retain control and responsibility for their mental health, even at times of crisis, will take time, experience and evidence. Investment is needed, whether this is investment of time to encourage people who have had a good experience to embed this in future practice, or financial investment in advocacy services, there is now an opportunity, with the backing of the Code of Practice, to build a future where trust is rewarded, where the Police can work cooperatively, where crisis becomes the trigger for ‘recovery’, and where support is common practice.

Janet Rogers is a trustee at the mental health charity Ponthafren Association, and has previously written for this blog on Volunteering whilst getting benefits and Mental Health 1983: Code of Practice - the review (in England). 

Derek Turner worked for the PAVO mental health team for many years. He is now retired, and runs The Thomas Shop in Penybont with his wife Liz.

What if "Restraint" was not an option?

by Freda Lacey

About this time last year the Minister of State for Care and Support, Norman Lamb, wrote about “Positive and safe: reducing the need for restrictive interventions” within health care. Mind’s report from the year before on “physical restraint in crisis” clearly outlined that the use of restraint was used to varying degrees and “face down” (or “prone” restraint as it’s sometimes called) was still being used despite the knowledge that it can cause serious harm and, in some situations, death.  The report made recommendations to the Government that the use of “face down” restraint should never be used in care and treatment settings.

The Mental Health Act Code of Practice, (currently being revised in Wales) devotes an entire chapter to “Managing behaviours that challenge,” and it clearly states that the least restrictive option(s) must be explored and restraint used only as a last resort.

The use of “restraint” and the “how”, when managing patients in hospitals, has been the topic of numerous blogs, reports, white papers, and news articles, particularly over the last few years. The Winterbourne Review spurred a great deal of investigation into the use of restraint, the Care Quality Commission specifically reporting on “Monitoring the Mental Health Act” in 2012/2013” and the use of restraint in hospitals. One of my favourite blogs is written by Mental Health Cop and he has his own views about restraint which may add texture to the topic. I am not going to write about how, when and where restraint is used in mental health settings, this has already been done by people far more knowledgeable than myself.

What I really want to highlight is how I’ve been affected by the topic of “restraint”. During my attendance at the Department of Health’s revision of the “English Mental Health Code of Practice” Expert Reference Group with Jan Rogers, I was privileged to sit in on several of the group meetings discussing changes to “the code”. The chapter called “Safe and therapeutic responses to disturbed behaviour” in the new Code of Practice made the experiences of restraint very real to me.

It was the first time where I listened to people’s direct experiences of being “restrained” in high, medium and acute wards whilst experiencing care under the Mental Health Act. I listened to family members speak of their experiences of witnessing their children’s restraint and the distress this has caused. People openly shared feelings of humiliation, trauma (some of this due to physical injuries they had sustained) and feelings of distrust in the people caring for them. They made direct links to the “way” they were physically restrained, sometimes stating they didn’t know “why” it had happened. I imagined how children or young adults may feel experiencing restraint and the trauma this may hold for them, particularly if abuse has been experienced. What is felt by people with a dementia, what comes up for them as a result of being restrained? As I listened, I wondered what would have happened had restraint never been an option. 

Interestingly around the same time, I caught sight of a national workshop on the management of violence in hospital settings. The workshop was pulled together by the “All Wales Senior Nurse Advisory Group for Mental Health” and their call to action really struck me. “The management of violence and aggression in mental health settings is a key issue for practitioners and educators. The Department of Health have recently consulted on restrictive practices in England along with the Mind publication in 2013; and we want to be at the forefront of planning developments and actions in Wales on behalf of our service users and our staff”. 

Having heard the recent stories from people who had experienced being restrained, I was curious to see and hear how staff approached the subject of restraint. The workshop was well attended by national ward management teams, general nursing staff, senior nurses and senior management.

 

One of the things that became apparent was that a good many staff felt the need to move away from restraining people and advocated “de-escalation” techniques, or “conflict resolution”. Basically, talking people down from a heightened sense of anger. I could see the difficulty experienced by staff when faced with a patient who is throwing punches and hurting them (one nurse spoke of being punched and having to be off work for some time) where the instinct is to restrain the patient so as to prevent being hurt. If restraint had to be used, then the workshop advocated using “supine” restraint or “face up” which is deemed less injurious and safer for the patient.

I volunteered to experience what it felt like to be restrained as in the afternoon we had a demonstration of using various methods of restraint for adults and older adults with dementia, (for example). Whilst the demonstrators were very careful with me (I was held down by two men and one woman), and pinned down so I couldn’t move and injure myself (and/or them), I was not trying very hard to be aggressive. I could imagine that if someone was very angry and aggressive that it may take some time of being held down and spoken with before the situation may diffuse. I was also startled at how quickly I went from standing to down on the floor and wondered if I was really emotional, angry and distressed, what effect the entire process might have on me. Also, if I were to be restrained by male nurses, how might this feel as a woman and similarly for men.

Hospitals are required to have policies on how to “manage” aggressive behaviour and in reading some policies from different areas I was struck by the following list of some of the things that staff should look out for as factors that may provoke disturbed or violent behaviour:       

• boredom and lack of environmental stimulation;
• lack of access to external space;
• personal frustrations associated with being in a restricted environment;
• difficulties in communication;
• emotional distress, e.g. following bereavement;
• antagonism, aggression or provocation on the part of others;
• physical illness;
• and an unsuitable mix of patients. 

It is worth noting that most of the above factors have been encountered by patients we see as part of the Powys Patients’ Council meetings and come up in patients’ feedback to us, so I wonder if these factors will always exist, to some degree, within in-patient units. If they do, then perhaps it’s not a matter of “may” provoke aggression, but that these are constantly having to be managed by staff in ways other than restraining patients.

One staff nurse mentioned that he worked within a high secure unit and that the staff never used restraint, that “conflict resolution” techniques were consistently used successfully. Here in Powys, ward management have mentioned that they don’t use restraint although staff are trained in Safe Physical Intervention Techniques or SPIT as it’s called. In fact, one of the staff on the ward here in Powys is the trainer for all Aneurin Bevan staff (including Gwent) in SPIT.

Another option for all psychiatric patients is to complete what is known as an “advance directive”, or here in Wales: “wishes known in advance” statement (we will be exploring this in more detail in a future blog post). This allows patients to state how they would like to be treated (or not treated) if they are detained by the Mental Health Act. They could quite clearly say that they don’t wish to be physically restrained and whilst an advance directive is not a legally binding document it would be good practice for hospital staff to respect the person’s wishes.

So, what’s the answer to restrain or not to restrain? It may be that while the Mental Health Act (and requisite Code of Practice) results in feelings of deprived liberty by people, there will always exist factors which may provoke people to behave aggressively. If this is the case, then ongoing debate and engagement on this topic will continue to be needed.

Finally, I’m curious to see if people may read something further into the paper outlined from the Department of Health mentioned at the very beginning of this blog post. It states, “This guidance forms a key part of the wider new Positive and Safe programme, which aims to end the unnecessary use of restrictive interventions across all health and adult social care." I wonder….

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.