Powys Patients’ Council - Kindles, smoking ban & more

by Owen Griffkin, Mental Health Participation Officer

I have been facilitating Powys Patients’ Council, with the support of volunteers Rhydian Parry and John Lilley, since early 2018 as part of my role in the Powys Association of Voluntary Organisations (PAVO) mental health team.

Powys Patients' Council aims to give a voice to patients, currently in Felindre Unit at Bronllys Hospital in Powys, who are offered acute in-patient mental health services. Regular patient-only meetings give people an opportunity to express their views on the services they receive whilst they are in hospital. These views are then passed on anonymously to ward and hospital management staff, in addition to senior Powys Teaching Health Board (PTHB) staff, so that solutions can be found.

Owen Griffkin

It was a sweltering day for June’s Patients’ Council meeting and the ward was close to capacity. This was the first Patients’ Council session since we had left a suggestion box on the ward, so there were more issues than usual to deal with. Having the suggestion box means we can address issues or concerns that we might have previously missed from people who have had short stays on the ward. It can also follow that these might have been dealt with already, as was the case with a note about the heating being on in rooms at night.

Another note praised the caring environment and professional staff which the Patients' Council were pleased to pass on to the new permanent Ward Manager, Lisa Hale.

Concerns raised in the meeting included a lack of activities, the annoyance of an office door banging and not being allowed devices with cameras in communal areas due to privacy reasons. As all modern tablets/phones have cameras this unfortunately means no devices can be used in the day room. We have sent out an appeal over Facebook and Twitter to see if anybody has any 1st generation Kindle Fires as these tablets didn’t have cameras, so hopefully we will get some response to this. We are looking into raising some money for activities provided by an external facilitator as this will leave the ward affected less by staff leave and sickness.

Lisa Hale, Felindre Ward Manager

There has been a new advocacy service commissioned by PTHB and delivered by Conwy & Denbighshire Mental Health Advocacy Service (CADMHAS) and this was praised by patients who found it very good and non-judgemental. We spoke to Adrianne Cleverly who provides the service in Powys recently in How can mental health advocacy help you?

Proposed smoking ban in hospital grounds

The Patients’ Council is also attending an extra meeting this month to discuss smoking in the light of the recently announced news about banning smoking on ALL hospital grounds.

As this will include acute mental health in-patient wards such as the Felindre Ward, it is important that people associated with the ward(s) voice their views in relation to this consultation. 

The ban is due to come into force in Summer 2019, and this will give ward managers 18 months from then to ensure there are alternative measures in place to replace existing indoor smoking rooms, and that outdoor areas fall in line with the new rules. One of the proposed rules will prohibit an outdoor smoking area from being within 10 metres of any hospital building. This will mean that if there is no exemption for mental health wards it will be impossible for there to be a secure smoking area that people can use without staff members present and this creates other issues relating to staff health and second-hand smoke. 

I will be working with the Patients’ Council to look at the possible impact of these rule changes, and how the hospital can offset the disruption and distress that it may cause to people on the ward and potentially other wards/mental health facilities across Powys. This will very likely be a contentious issue and it will be interesting to see how other hospitals in Wales deal with it. If you have lived experience of an acute mental health ward, and would like to contribute to the consultation, please email owen.griffkin@pavo.org.uk or ring 01597 822191 with your comments or for more information.

Celebrating the One Powys Connecting Voices project

On a wintery Tuesday in late March, Carl Cooper, the PAVO Chief Executive Officer, spoke at the Powys COVERED (Connecting Our Voices Embracing Real Engagement and Dialogue) event which celebrated the achievements and legacy of the lottery funded One Powys Connecting Voices project. PAVO managed a portfolio of six projects over five years aiming to empower citizens to have a greater influence on the design and delivery of statutory services in Powys.

Over the past five years on this blog we have observed and recorded some of the achievements of one of the portfolio projects in particular: YAPS (Young Adult Peer Support project) run by Ponthafren Association (read The YAPS project at Ponthafren Association, Young Adult Peer Support project @ PAVO AGM and YAPS Sharing the Voice).

Carl summed up some of the achievements of the OPCV project as a whole at the event:

 “About 7 years ago the Big Lottery Fund in Wales had an idea. It wanted to try to support people in getting their voice heard and in influencing decisions that affected them. They then invited County Voluntary Councils such as Powys Association of Voluntary Organisations to put in a bid (it was a competitive process - not every area of Wales was successful), in relation to getting voices heard to make a difference, but also in a way that reflected the local context and local environment.

To be frank, I was surprised we were awarded the money. That’s not because I thought that what we set out to do wasn’t important, but our approach here in Powys has been very unique in that if you were to look at the projects elsewhere in Wales they have a very, very distinct focus. One was focussing exclusively on mental health. Another on learning disabilities and so on. We took a risk I think, in that at the time, together with the council and health board and other partners, we were developing the One Powys Plan. And the OPP was a diverse plan wanting to do lots of things. So we brought together a portfolio of projects to enable voices to have an influence on different aspects of the OPP. So as you will see around the room we have got people supporting carers, people that were focussing on neurological conditions, others that focussed on older people, others that focussed on the environment and sustainability, on younger people, on children and so on. 

My slight nervousness was that the Big Lottery Fund might look at this and say, hmmmnn, not sure about this because it feels a bit fragmented. It doesn’t really hang together very well. Gladly they didn’t, and I think what we have been able to do over the last five years is bring that diversity of people’s voices to bear on planning and decision making here in Powys. And it’s been a delight to work with our partner organisations represented in this room and I want to thank you for working with us so readily, so effectively and in a way that I think has built relationships between ourselves but also within the wider sector and partnership arena.

So what has this project actually done? Well, in one way it’s very simple. We wanted to try to support people in getting their views, observations, comments and concerns heard by Welsh Government, by the commissioners of services, by our statutory partners in the council and health board, by emergency services such as the police and many others. And I’m pleased to say that that was done and it was done well. Nothing is perfect and it would be invidious of me to stand here and pretend that things are ever perfect. But this project has made a difference. And that is crucial.

Barbara Perkins, OPCV Officer and Martin Nosworthy, Chair of the PAVO Board

So when I look at some of the evidence and information from this portfolio of projects, I see some of these things we know are true of Powys, for example how the geography of Powys is a constant challenge, particularly when it comes to access to services. But over the last five years, when you look at what has actually emerged, we now have virtual wards operating in Powys that the voluntary sector, health, social services and so on come together to realise and to run. We have video links, which connect patients to GPs and special consultants, be they local or a further distance away. That’s just the first of a number of examples really. I don’t want to claim that this project was the one and only influence on those decisions, but the crucial thing is that we can evidence that this project influenced those decisions.

You, and the people you represent, not only got your voices heard but your voices were listened to and they made a difference. That is crucial. Also the way in which young carers were brought into contact with social workers. The way in which those young carers were then involved in the training of social workers. So that workforce development, as well as operational delivery, was part of how the voice was mobilised to make things different. The commissioners for older people’s and children’s services have been involved in discussion and dialogue around transport, around social isolation, loneliness, and certainly if you look at some of the initiatives that have been taking place over the last years, and that will continue under the new area plan and wellbeing plans, then again things are different.

We’ve seen lots of other things develop. Again partly influenced by this project, be it around recycling and the involvement of communities and volunteers in recycling. So called upcycling. So, you take what might one time have been discarded and you give it fresh life for new use. We have repair cafes that have emerged over Powys over the last years. Again partly as a result of this project. 

Julia Gorman and Robin Green ran the YAPS Project at Ponthafren Association

Further examples include dementia cafes, and dementia support groups. Children have led campaigns about children’s rights. Young adults have provided services to local employers especially around training and workforce development. We’ve also seen in this project, and because of it, impact around helping people with shopping and making sure that particularly older people who find it difficult, if not impossible, to get out of the house, get affordable goods delivered to them. And we’ve been able to link that with some support around cooking and healthy eating and again that wouldn’t have happened, certainly not in the same way, had it not been for what this project was doing. 

My last example is around digital accessibility. We all know that transport is a perennial intractable problem here in Powys. But crucially we are very aware that people need to be plugged in digitally in the 21st century in order to be able to access health, social and commercial services at all times. And part of what this project has done is to help people in terms of upskilling and training and information when it comes to technology and internet services. Again another example of an accessibility barrier that has been overcome.

So, I’ve just tried to focus on literally ten or so examples of where what we’re doing today is not just saying well done and let’s go home, but well done and you’ve made a difference. Things are not the same in Powys today as they were five years ago because of what you and colleagues have done. And that’s a testimony not just to the project but to the value of participation, the effectiveness of public engagement, and to use a bit of more modern jargon, the importance of so-called co-production. 

And so I'll end my comments by saying that this work does not stop here. During the lifespan of this project we’ve had a so called Issues Log. And each of the projects has added issues to that log and so we have been able to see what issues and what comments people have been presenting with. Over the five years we’ve had thousands of issues. But six hundred of those issues were taken forward in dialogue and engagement and in conversation with local partners and with local agencies. And that will continue. Because PAVO is building a new website and this will be live very soon. And one of the things you will see on the website is an online portal which will be the updated version of our Issues Log. So, although the project is coming to an end it will still be possible for environmental groups, for carers, for children, for older people, for younger people and many others to go to the PAVO website and actually make sure that your issue is logged.

But it doesn’t stop there. We will then regularly collate and analyse that information, and make sure that it continues to influence decisions through our links with partners and strategic partnerships. So it’s not the end today. The end of the project, but things will still continue.”

Mental Health and the Welsh Ambulance Service Trust

This week’s guest post is from Isobel Jones, who works for the Patient Experience and Community Involvement team for the Welsh Ambulance Service NHS Trust. I first met Isobel at a Welshpool meeting of the Stand up! For emotional health and wellbeing project run by our team where she introduced us to her work. I caught up with Isobel lately and asked her if she would tell us more about her role for the blog. 

What led you to this particular role at Welsh Ambulance Service Trust? 

I come from a Social Care background, and have also worked in the Third Sector, however, throughout my various roles I realised that I was becoming more and more interested in engagement. Involving people in shaping the services they receive can only help develop better services. It just makes so much sense. 

In some of my past roles I had been asked to undertake some projects which had enabled people to be involved in the planning and development of the services they received and I found these projects very insightful and interesting.

I followed this idea further by attending training courses which explored effective participation and engagement skills, and they gave me the tools and techniques to do this.

When the job was advertised within the Welsh Ambulance Service’s Patient Experience and Community Involvement Team I was excited as this was just where I could see myself. I hadn’t looked at it from a Health perspective before so I knew this would be a new challenge.

How do you educate patients and the public about the services provided by the Trust?

We have an extensive engagement model, which allows us to reach different groups and communities. We use our partners in the Health Boards, statutory, third sector and other community links to be able to engage with different people who may have used our broad range of services. It is important to go where people are. We’ll also host information stands at a range of events across Wales that helps us to talk to local people.

We then arrange to go out to meet people in these different groups and talk about our services, which includes awareness about how we respond to and prioritise 999 calls. It is important when we visit groups that we listen to people’s experiences and their stories, and encourage people to give us their feedback.

We make people aware of how they can ‘Choose Well’, by accessing a range of health services available from GP, Out of Hours, Pharmacies, A&E Units and Minor Injury Units. We also talk about self-care, and using services such as NHS Direct Wales for telephone and online advice.

My work involves engaging with mental health groups, older people and people living with dementia. I have also visited learning disability groups, schools, groups with specialist health needs like Chronic Obstructive Pulmonary Disease and other respiratory conditions, Parkinson’s, Multiple Sclerosis and various Black and Minority Ethnic (BME) groups.

We have a continuous engagement model which gives me the opportunity to visit groups again and again, building up trust and encouraging people to stay involved with us as a service as their contribution is so important. 

I was also given the opportunity to train as a Community First Responder for WAST which I completed in March last year. With this training I am equipped to provide awareness sessions for community groups about how to undertake emergency first aid to support saving a person’s life, by learning in basic steps what we all can do to help someone when they face a life threatening emergency like a cardiac arrest, how to use a defibrillator, what to do if someone is choking, or needs to be placed into the recovery position until the ambulance arrives.

If someone being transported by WAST is experiencing mental distress, what support is provided by staff?

All our staff should support such a person with the utmost of dignity and respect, recognising that whilst with physical health conditions these are often visible, not all health conditions are visible, especially mental health and wellbeing.

Our staff will have followed any assessments of need that are in place for mental health, including local pathways which are in place which have been agreed in partnership with local services.

WAST Staff are currently going through a training programme focusing on mental health.

What kind of training do Trust staff have to help them support someone in mental health crisis?

The new WAST Mental Health Strategy which has recently been formed is very clear that there needs to be more training for our staff on the needs of people who experience mental ill health, and for our staff to be more aware of how to treat people who call 999 in crisis. This has come out of the fact that staff have acknowledged there is a need for this, to benefit people with mental health needs.

Tell us more about the Trust’s Mental Health Improvement Plan

People who access mental health services have told us that these things are important:

• Don’t ‘generalise’ mental illness. 
• Consider my communication needs.
• To be seen as a human being.
• Need calming, understanding and polite approach for people experiencing panic. 
• To be respected and treated equally. 
• Be listened to and believed. 
• Listen to carers as well as the person needing medical attention. 
• Staff need knowledge and awareness of mental health issues. 

Our staff have told us:

• We need a “better process for responding to patients in crisis.” 
• We need “up to date evidenced based training.” 
• We need “better links with crisis teams.” 
• There are “inconsistent pathways across Wales.” 
• There is a “variance of support across the localities.” 
• There is a “lack of suitable alternatives to A&E.” 

Our staff need support on how to maintain their own mental health, how to prevent stress and sleep problems, ensure good nutrition avoid substance misuse, etc.

Because of this, these are the priorities we have set for our plan:

Priority 1: Putting you at the centre

• Everybody is different and has different unique needs and experiences of mental health at different ages. 
• Specific work needs to be done around children and young people’s needs. 
• Think about the needs of people with dementia and of people with fluctuating mental capacity. 
• Supporting those who are at risk of suicide and self-harm. 
• Caring for those who may misuse substances. 

Priority 2: Training, awareness and skills for Welsh Ambulance staff

• What do our staff need to know about mental health in terms of training, attitude and approach? 
• Understanding people’s unique mental health needs (and the spectrum of mental health disorders).

Priority 3: Working better with other professionals

• Working better with GPs, hospitals, local community support services, Health Boards, carers, family, social services. 
• Working with trained mental health practitioners to support our frontline teams.
• Developing alternative pathways for people experiencing mental distress. 
• The purpose of these pathways is to make sure you are seen by the right person at the right time. 
• Where possible get appropriate help in the community, rather than a hospital setting. 
• Only considering hospital settings if physical health is at risk.

Priority 4: Caring for the wellbeing of our staff

• Putting support systems in place.
• Having mental health advocates. 
• Helping staff cope after traumatic incidents.

For our staff we need to maintain optimum mental health, sleep, exercise, nutrition, management of alcohol intake, etc.

Priority 5: Dealing with challenging situations

If an ambulance staff member is facing violence in an extreme situation, we will assess the risk and decide when it is appropriate to restrain someone to keep them and staff safe.

Priority 6: Giving necessary guidance and support to teams

• We have people within Welsh Ambulance Service who lead our mental health work. 
• We need to make sure staff are supported and have the right supervision to develop knowledge and skills about mental health.
• This is for the benefit of all people who access mental health services as well as to support Welsh Ambulance Services staff.

Which other organisations do you work closely with in Powys to provide support to people? 

So far, I have only worked with ‘Stand up! For emotional health and wellbeing’ in Welshpool. I would love the opportunity to network with and meet other groups in Powys so please get in touch!

We have visited many groups that support individuals with mental health and wellbeing concerns across Wales, but we would like more opportunities to speak to people in Powys. Have you used our services and would you like to give us feedback?

We would also appreciate your help to enable us to further develop our services as part of our Mental Health Improvement Plan. If you or your group / organisation are happy to receive a visit or take part in a focus group, please contact me (details below). Your views and experiences are important to us to help shape the way we work and how we support people.

What is the most challenging aspect of the job?

Sometimes it is the amount of travelling, as I travel all across Wales!

But in the main, it is making sure I listen carefully to what people tell me, and make sure I understand what is important to them. The challenge then is to make sure that voices are heard within the organisation in such a way that can make a real difference to the way we do things in the future.

To do this effectively it is very important to be a very open, friendly person, showing kindness and respect for any person who wishes to talk with you. I feel I need to show in my face and my body language that integrity is important, and that I can be trusted.

Sometimes people are angry and hurt, for good reasons, by their experiences.

I know they are not taking this out on me personally, it is important to understand why people say what they say, in the way they may say it. It is important for me to convey in a calming manner, acceptance and acknowledgement of how people are feeling and for people’s hurt feelings to be validated. 

Tell us about some of the most rewarding work you have done at WAST

Over the last year I engaged with a wide range of groups across Wales who supporting people experiencing mental health issues from many backgrounds.

Whilst most people reported positive experiences of having used emergency ambulances and non-emergency services, their suggestions were both insightful and helpful, as were the thoughts and observations from support workers and other professionals. 

I was given the opportunity in July 2017 to attend the WAST Trust Board and provide feedback on all of the engagement work I have undertaken with mental health groups and organisations across Wales. This presentation was well received by executive leads and managers in WAST. I was able to convey thanks to all the individuals with mental health concerns, organisations and staff who have shared their (sometimes very painful) stories with me. This opportunity allowed all of these voices to be heard, which contributes toward improving outcomes for people who use our services.

Another piece of work I found really rewarding was with people from the learning disability community where I was involved in setting up a drama group. This was a group of individuals in Caerphilly who worked in partnership with us to use drama to understand some of the barriers they experience when they ring 999 for an ambulance. During a celebration event in Blackwood, the drama group, which consisted of people with learning disabilities, showcased scenarios with real live call handlers, paramedics and community first responders.

What is the most valuable thing you have learnt since starting your role?

I am always totally humbled when people I have only recently met open their heart with sometimes very painful stories to me. I always try to do my best to do justice to what people tell me, so that it really makes a difference. We want to listen to people’s stories and experiences of using our services, and to capture feedback from people to improve our services.

Also since I trained as a community first responder volunteer myself back in March last year going on an emergency ambulance ride out with a crew from Hawthorn Ambulance Station to observe the experts in full flow to help consolidate my training has also formed part of my continuing journey… The day progressed with themes of falls coming up at least twice, sepsis also twice, breathing difficulties and presenting chest pains which may have been related to post traumatic anxiety, stress or other mental health concern. There was a lot to be learned about the needs of carers as well. What if they themselves need medical treatment and to be admitted but they are worrying about what will then happen to loved ones they care for, who may have dementia, a mental health condition, a physical or a learning disability, or in fact any combination of these? Colleagues shared with us about these dilemmas, as sometimes it is not just about the patient, but it was about their family as well.

When you are not working for WAST, how do you enjoy spending your time?

I love cooking, especially making jams, marmalade, herb jellies and chutneys. I gift wrap these and give them as presents. I also sell them to raise funds for charities.

I love walking and the outside world, animals, wildflowers, plants and nature, and especially my garden where I collect and grow loads of plants, shrubs, flowers and herbs. These interests often inspire me to paint watercolour pictures, play the guitar, write, sing and perform songs and poems. So this is just a little bit about me!

Many thanks to Isobel for telling us all about her role. You can contact her by ringing: 01792 776252 Ext. 45444 or emailing: isobel.jones@wales.nhs.uk

YAPS - Sharing the Voice

The Young Adult Peer Support Project, delivered by the mental health charity Ponthafren Association, recently received a welcome opportunity to help spread the word about its vital work. The YAPS project offers peer support mentoring to young people (16-25 years old) who experience mental health issues, by helping to give them a voice of their own in the development of services. You can watch a YAPS project video, and also find out about the amazing game which the young people devised where players try to access mental health services as if in the real world and experiencing mental distress. The team from YAPS tell us more:

Robin Green, YAPS Project

We were fortunate enough to be given a six month extension on the YAPS project with the aim of spreading the feedback we have received from those we have worked with over the last 3 years. In the time leading to the end of the YAPS project we have been focusing, and will continue to focus, on tackling the more sizable and historically challenging issues we have been told about while working with young people: namely that of respect and communication. To address these concerns we have been feeding back to the service providers in the form of presentations and workshops which will be followed by more in the coming weeks and months. The aim is to educate and inform the service providers on the needs and concerns of the vulnerable people the YAPS project has come into contact with. 

Most issues reported to us that are not those of individual circumstance focus on the amount of respect, empathy, and understanding (or lack thereof) that people feel they get from services or the individuals within them. This often comes down to either poor ability to listen to or understand the individual in question, an inability to encourage and support an individual who may struggle to voice their concerns themselves, and/or a restriction on the amount of time any individual can get to explain themselves effectively. More often than not it is a combination of any or all of the above. Our hope is by sharing with other organisations what we have learned from young people’s experiences, we can disseminate their voice out into the community to help change the way services operate and to help make them more accommodating to those vulnerable people who need additional support. 

To try and tackle these seemingly common instances, we hope to speak with as many service providers as possible about the importance of truly listening and giving time to someone who needs it, even if it’s only five minutes extra. We have so far delivered what we’ve learnt to over 120 individuals representing more than 15 organisations and we remind service providers that “...when a young person comes for help, they are often scared: you might know what’s going to happen next, but they don’t.” In response, young people have suggested slightly longer meetings, more invitation for the young person to control the conversation, or a box on a form to tell the organisation in advance of any anxiety or depression that might get in the way of the discussion. Depending on the service being provided, resolutions to these problems may vary but we invite service providers to explore the possibilities. 

The feedback we have received so far from the events we have attended has all been very positive. Several people have come forward to say what we have spoken about has really resonated with them on a personal level and others have enquired about how we can support their organisations further in the future so they can support their own communities more effectively. While for others we were able to offer a perspective perhaps service providers often forget: as one person wrote on twitter, “The YAPS game provides a fascinating insight into the experience of young people needing mental health support.” 

One young person once told us that: “It’s sad that sometimes it’s the services we use that make us feel bad for accessing them.” None of the young people we have met have ever seemed to display any sense of entitlement for a service; instead they often feel scared, embarrassed, or guilty for accessing certain services and this should never be the case when someone needs help. We aim to see several more important service providers before the end of our project to try to reduce the number of young people who feel devalued and not welcome in their search for the help they deserve.

The Young Adult Peer Support (YAPS) project is one of the One Powys - Connecting Voices projects funded by the Big Lottery Fund. You can find out more about these projects by contacting Barbara Perkins, tel: 01597 822191 or email: barbara.perkins@pavo.org.uk

Young Adult Peer Support workshop @ PAVO AGM

L-R: Julia Gorman (YAPS co-ordinator), Robin Green (YAPS Assistant Co-ordinator)
 - both with Ponthafren Association, and Sarah Harmon

Just last week I joined colleagues to help at our annual PAVO AGM which took place at the Royal Welsh Showground near Builth Wells. In the Chair's invitation to the AGM, Gloria Jones Powell wrote: "Welsh Government's White Paper, Reforming Local Government: Power to Local People, states that we need to be: 'Putting people at the centre and involving service users in prioritising, commissioning, designing, delivering and accessing services'. Unlike the usual approach to consultation and engagement, the projects within PAVO's One Powys - Connecting Voices portfolio invite commissioners, service providers and others to listen to what's important to them".

The Young Adult Peer Support (YAPS) project, which is one of the One Powys - Connecting Voices projects funded by the Big Lottery Fund, held a workshop at the AGM. It was attended by representatives from Powys teaching Health Board, Powys County Council, and numerous voluntary organisations and individuals, all of whom had an interest in mental health. My role was to support the project facilitators on the day, and so it was I joined Julia Gorman, Robin Green, and Sarah Harmon - one of the young people involved with the project - to capture feedback about mental health services from those attending. 

The YAPS project is delivered by Ponthafren Association, and offers peer support mentoring to young people (16-25 years old) who experience mental health issues, by helping to give them a voice of their own in the development of services. A project volunteer wrote about her experience for us last year, and we featured the project video "I don't let mental health define me" earlier this year.

The YAPS team had devised an intriguing game to carry out for the first half of their workshop. They had raided all the Ponthafren board games for dice! The aim of the game was to try and access mental health services as young people would do in the real world if they were experiencing mental distress. Starting at home, a simple throw of the dice would see the workshop participants on their way to the various services on offer in Powys. How hard could it be!

Martin Nosworthy, PAVO trustee, at the start of the YAPS game

Depending on the throw of the dice participants would be directed to one of various stages around the main hall at the AGM venue. They might be sent to College, a Friend's house, the GP, Ponthafren Association, the Police, or Child & Adolescent Mental Health Services (CAMHS) for example. On the way to their next "station" in the game, they had to negotiate chairs, tables, and numerous other players of the game, all competing to reach their own stage and win the support they so very much needed.

Those lucky enough to reach College/University then had to throw again. 1 = too anxious to go - return home, 2 = bad day - get a Crisis Card, 3 - 5 = good day = go to friends, 6 = pass an exam - take a chocolate and go home. 

The Crisis Card was particularly bad news. It stated: Stop taking your medication, lose a chocolate and go to the GP...

The pile of sweets did go down slowly, but most people, whilst glad to pick up an occasional reward, were starting to feel increasingly frustrated about how often that they had to return home....

Many participants made it to the GP surgery, including Kate van den Ende, one of the reps on the Mental Health National Forum, (who wrote for us very recently about Dual Diagnosis).

However, over at Child & Adolescent Mental Health Services there were very few arrivals...

And at the Police Station whatever the throw of the dice, the news was not good. 1 - 2 = get fined, go home and return a chocolate. 3 - 6 = cautioned, and go home.

After 30 minutes the game was stopped and we gathered the participants together to get their feedback. Everyone expressed frustration at not being able to access the support they needed. They kept "getting caught" or "having to return home". Their frustration escalated significantly when they learnt that one dice roll was equivalent to one whole day! They said that the situation was totally unpredictable and completely out of their control!

Only two players of the game acquired the elusive Mentor Card and were less likely to be trapped at home. They quickly realised that they: 

• Would no longer be sent home.
• Had increased confidence.
• Felt more comfortable. 
• Could do things and get results. 

As Robin explained: "That is what peer support does. This is what YAPS does."

It was a brilliant game. And both a brilliant and fun way to convey to people the increasing frustrations of a young person trying to access services and being passed from one to another without ever getting to the root of their problem.

Barbara Perkins (centre), PAVO One Powys Connecting Voices Officer
with Sarah and Robin

The workshop continued for another half an hour with an animated discussion around the value of the YAPS Project and the many barriers to young people accessing relevant services in Powys. Watch this space for further updates as the One Powys - Connecting Voices Project continues to make a difference to the way in which public services are planned and delivered. Over at YAPS they are listening hard and looking to suggest some very innovative solutions.

The YAPS Project runs its own blog called VOX. Check it out here.

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.

Five top sportsmen and women talk about mental health

It’s one of my favourite times of the year – Wimbledon fortnight! Sport plays such a big part in so many people’s lives, whether as participants or spectators or both. For me – well, playing tennis is definitely not one of my strengths – but I just love to watch or listen on the radio. You can’t help but admire the abilities of top sportsmen and women at the peak of their game.

But there is another side to sport, and particularly over the last few years we have become more aware of the impact that the pressures of playing at the top of your game can potentially have on your mental health. Organisations such as Mind have written on the subject. And it is summed up well by Liz Lockhart on Mentally Healthy:

"We see pictures of athletes enjoying a celebrity life-style, out on the town, mixing with the ‘beautiful people’ but we rarely stop to consider the downside to the pressure that comes with success. Players must feel dreadful ‘lows’ when they are not selected and a huge emptiness when they face retirement.

The message, which must reach the ears of sportsmen and women at all levels in their game, must surely be that they need to recognise when they are having difficulties. To seek help without fear if they feel the need for it, and to realise that their mental health is as paramount as their physical health. You can’t have one without the other."

Here in Powys we have found that when people tell their stories it can be enormously helpful, both to those doing the telling and those listening or reading. So here are links to the stories of five top sportsmen and women who have talked openly about being touched by issues relating to their mental health. Their coping strategies can help all of us looking to improve our own mental health.

Frank Bruno – boxer

Frank is a former British professional boxer who competed for over thirteen years. He won 40 out of 45 bouts, including the World Boxing Council world heavyweight championship in 1995. He retired in 1996 after receiving a serious eye injury during a fight with Mike Tyson.

Rachel Bruno, Frank’s daughter, was 16 years old when her father was first sectioned, aged 41, in 2003. She and her father talk openly and honestly about the impact his mental distress has had on the family on the Time to Change website.

Frank also spoke in 2013 about how returning to boxing training was helping his mental health.

"If you can do some form of exercise, it clears your head, sets you up and paves the way for you….Try and go to yoga, try and do a bit of walking, a little bit of jogging, go to an aerobics club, go to a gym, go to a sauna or swim. Just think healthy and try and do healthy things. Sometimes it clears your head.”

Clarke Carlisle – footballer

Clarke played for a number of top clubs during his 16 year playing career including Queens Park Rangers and Burnley before retiring in 2013. He was also chairman of the Professional Footballers’ Association. In 2013 he presented the BBC’s Football’s Suicide Secret programme. 

"I still bear the scars from my battle with mental health. I kept my depression a secret from clubs and teammates for almost two decades and it almost cost me my life….. (Now) I want to do all I can to raise awareness of the importance of mental health - not only to break down the stigma and taboos but also to make sure people know where they can find support."

Clarke now talks about his experiences at conferences and events. In October he will speak about mental well being in the workplace, at a conference in Jersey organised in conjunction with MIND Jersey.

Clara Hughes – cyclist and speed skater

Clara has won medals at both the Winter and Summer Olympics for her home country of Canada. Then her life took a different turn when she began to feel depressed.

“I felt ashamed of how I looked and how I was. It was easier not be around people. I was really afraid and alone.”

She now fronts a national campaign called Let’s Talk, set up to spark a conversation about the realities of mental health and ending the stigma – covering issues just as relevant in the UK as in Canada. She describes how poor mental health impacted on her sport and what happened next in a TV interview.

“More than anything I have ever done in the Olympics this has affected people.”

Sir John Kirwan – rugby player

John played rugby union and rugby league for New Zealand for many years and is now a Rugby Union coach. But he received his knighthood in 2012 for services to mental health as well as rugby.

“One day I was happy go lucky JK … (then) the biggest fear for me was that I was never going to be well again…. " Now he says: "Hang on to hope, grab hold of it.”

Originally he saw seeking help as a weakness, and that he would be regarded as a failure. But then he reached out – he now recognises that depression is not a weakness, it is just something that happens.

John fronted a series of TV interviews in his native New Zealand to combat the stigma associated with depression.

John’s story also features on Whirlwind Stories, a website set up to help enable men to positively embrace their mental health through the sharing of stories.

You can watch a longer interview with John Kirwan at his home in Italy where he shares his strategies for living with depression.


Rebecca Marino – tennis player

Rebecca Marino played tennis professionally for Canada and took on the likes of Venus Williams at the 2010 US Open. A year later, in 2011, she was on the courts at Wimbledon. But she was due at another tournament in the UK when she first spoke to her coach about her depression.

“I was just sad and I couldn’t contain it.”

At first she found it hard to talk to her family and friends about her distress. But when she did, she realised: “Opening up to them was the best thing I’ve ever done.”

Rebecca was at the top of her game, number 38 in the world, and yet the saddest she had ever been. At the age of 22 she decided to retire from professional tennis and go to university instead. You can watch her TED talk about her experiences "Slipping Through the Cracks: Pro Athletes and Mental Health".

Rebecca wants to highlight that it’s OK to feel weak or sad and share your feelings. She feels people are slipping through the cracks, even though there are organisations to help people, she feels individuals are scared or do not know where to go for help. This is why she told her story.

Has sport played a role in your mental health journey? Let us know in the comments box below, or email: pamhinfo@pavo.org.uk