In memory of Kelvin Mills: trustee, volunteer and life affirmer

Powys Patients' Council team 2014: L - R Freda Lacey, Rhydian Parry, Penny Price (Ward Manager), John Lilley, Kelvin Mills

by guest author, Freda Lacey
PAVO Senior Officer, Health & Social Care

I wrote recently about “Dying Matters” and in May, one of the long standing volunteers of the PAVO Mental Health team, Powys Mental Health Alliance (PMHA) and Mid Powys Mind - Kelvin Mills - died.

When I facilitated Powys Patients’ Council several years ago now, which goes into Bronllys Hospital Mental Health Inpatient Unit, I was privileged to work with three volunteers. Kelvin was one of the liveliest volunteers who dedicated his time to speaking with patients and rallying them around to come in and visit us to talk about how they were doing and/or speaking up about any issues, compliments, concerns they had whilst being an inpatient on the mental health ward.

It is no secret that Kelvin used to be a patient, both at Bronllys for some time but also at “Mid Wales Hospital”. He was known, far and wide, by staff and other people in contact with services, volunteers and members of the public. Everyone seemed to know Kelvin. I don’t think he ever met a stranger. If he didn’t know you, he’d know all about you within minutes, and you’d know about him! He would have treated you to a story or two, shared some history, told a joke (quite often “politically incorrect”) and laugh hilariously so you had no choice but to laugh with him. He was incredibly generous and very funny, sometimes without meaning to be.

Kelvin at a PMHA trustee meeting in 2010 with fellow trustee Jill Dibling

I remember fondly some of the PMHA Trustee meetings, when trying to have a serious conversation about some order of business, Kelvin would break out the crisps from his rucksack (which he was never without) and start to share them out, not caring a whit about whether it was the right time for a break. Kelvin could get quite passionate about rights and would tell you straight if he thought something wasn’t right. He wasn’t shy about saying what needed to happen - he expected people to step up to the plate and do what was necessary.

Kelvin's Poems & Jokes page in the PMHA newsletter

He was a nostalgic and used to quite often tell stories of his time in Mid Wales Hospital and the fun and community they had. He spoke about his catering experience and I know from attending his funeral, and hearing some more about his life, that he was a very good cook. I believe he used to volunteer/cook with Mid Powys Mind on occasion.

Before going into Bronllys Hospital for our meetings with patients, we’d always have lunch, the volunteers and I, and have a bit of a briefing about issues we’d picked up from the last meeting and actions that had taken place. Kelvin was known to the staff at “The Honey Café” where he would chat away to them as if they were his friends. He would order the same thing always, a cheese sandwich, a cup of coffee and an apple or berry tart with vanilla ice cream, all to come at the same time. He is the only person I knew who could stand whilst having a cup of coffee in one hand, a cigarette in another and fall asleep - an incredible feat of balance.

Despite Kelvin’s physical ailments, he would always be ready to come to Patients’ Council and looked forward to his outings. He was always telling me about ways of saving the public purse and would speak quite often about the amount of money being spent on services and whether it was really value for money. He made me reflect on how things were and are now.

I think Kelvin always sought for ways to belong, to local community. He was incredibly attached to Llandrindod Wells Football Club and used to go to games with his Dad. He was dedicated to helping the club in many ways. He was also a bit of a rock and roller, liked wearing leather jackets, jeans and loved Elvis Presley and was seriously attached to watching Westerns.

Gravel Baptist Chapel

People I’ve spoken to remember Kelvin very fondly. One of the Senior Managers at Bronllys mentioned a Christmas on the ward she’d never forget, especially given what Kelvin had bought for all the nurses!

We will miss Kelvin. We will miss his laughter, his humour, his stories and his abilities to break down the barriers of what is expected and the unusual. He took risks without knowing he showed us how to push the boundaries. He didn’t do what was usual and yet he was so very familiar. He wasn’t silent and sometimes his stories meant you got lost or side tracked. I learned to be patient with him as he sometimes wouldn’t take no for an answer. He demanded respect and well, he deserved it. His life, whilst too short, packed a punch, I’ll never forget him.

There is a saying at the end of the novel, “Middlemarch” which I feel appropriate to end with (and have taken some liberties of changing some words).... "His full nature spent itself in deeds which left no great name on the Earth, but the effect of his being on those around him was uncapturable. For the growing good of the World is partly dependant on unhistoric acts, and on all those people who live faithfully their hidden lives and rest in unvisited tombs.”

Kelvin lies at rest in Gravel Baptist Church’s graveyard, overlooking the peaceful countryside near Llangunllo. I’d like to think he won’t rest in an unvisited tomb…

RIP Kelvin Mills: died 6 May 2017, aged 59 years.

At the end of the day...

by guest author Freda Lacey 

PAVO Senior Officer, Health & Social Care

“Dying Matters”. This subject was the focus of an entire week this past May. In Welsh, “Byw Nawr”, (Live Now). During this week, I felt drawn to actively take some action on my own Living Now and Dying Matters.

Powys Teaching Health Board (PTHB), along with a number of health care agencies, particularly hospice care agencies, which includes Third Sector, (ie: The Bracken Trust), held various events during the week. The aim was to encourage people to speak openly about death and dying, discuss what advance planning is, and also how to cope with dying, death and bereavement.

Several weeks ago now, PAVO’s Health and Social Care Team held a joint “engagement” session, with PTHB colleagues, the Third Sector and other agencies, exploring cancer and end of life or palliative care. We discussed a number of topics but one of the key themes which emerged was in relation to “Advance Care Planning” which includes “Statement of Wishes and Preferences”, “Advance Decisions” and “Lasting Power of Attorney”. However, the above care planning implies that someone is in health care and/or on a patient pathway of some sort.

I’m not sure about anyone else, but I don’t usually think about my death or the death of people I care about. It seems to me a topic shrouded in fear, perhaps just thinking about it may propel it to happen sooner than I’m ready? I wonder if there is a type of stigma, perhaps unspoken, associated with death? Mostly I reckon it’s about how someone dies. Generally when we hear of someone’s death, we almost always ask, how? Do we then go on to judge what is a good death or a bad death? In what way might this influence our thinking (or not) about our own death experience?

I’ve been reflecting on how we can be affected by someone’s death by suicide, how this can have a lasting effect on us, or if someone dies from alcohol consumption, or cancer brought on by smoking, or dying of a drug overdose. What does this leave us with? Does it leave us with an unexpressed fear in relation to ourselves?

In my family, and whilst living in Powys, I have experienced my fair share of bereavement; my Mum dying when I was turning 12, two of my first cousins who have both died from suicide in recent years in really difficult circumstances, two of my closest uncles who both died from complications due to alcohol dependency, a beloved neighbour who died due to complications of pneumonia. All of them died in ways that could be seen as having had a “bad” dying experience. There is a saying that it is not death we fear, but dying. So, is it the process of dying that matters most to us?

By contrast, I have experienced the death of a very beloved aunt, a surrogate mother. She lived to a good age of 86. She had been in and out of hospital for some time and we all knew she was getting frailer, but when she died at home, on December 18th 2015, we were shocked, but grateful for the “how”. She died in her own bed, waiting for a cup of tea that her husband, diagnosed with Alzheimers and 92, was making for her.

In Ireland, we have a tradition of “waking” our dead and I find this tradition comforting, normalising and healing. For my aunt, we sat around with her, in her open coffin, in the house for a few days before her burial. Friends, neighbours and relatives came to see her, we spoke of her and told stories. We patted her head as we walked past, held her hand, and waved incense around her. We talked with her as if she was listening to us. We ate with her nearby, certainly drank to her (she loved a glass of whiskey), my uncle, her children and grandchildren slept in the living room with her, she was not left alone. For my uncle, this was particularly comforting and allowed us all to grieve, talk about and celebrate her together. It was normalising.

What made the process of her death go so smoothly was our advanced planning, although clearly we didn’t plan when she was to die! Several years ago, we planned a writing their “Will” weekend together where all the family spent time, with much food and drink, planning what they wanted, when they died. Did they wish to die at home, what about resuscitation, where did they want to be buried, music, poems, readings, who did what, even who was to get which of their belongings. They dictated what should happen and we wrote it down. Everyone had a say and “their” say was final. As a result of this pre-planning, which was good fun with much laughter, the process of my aunt’s death was smooth and without drama, well apart from a kerfuffle at the church door when as daughters in the family, we carried her coffin into the church and there was a lively discussion about who was shortest and therefore needed to be in front!

Having thought about “Dying Matters”, I have made a commitment to myself to not only write my will, but also to think about my “Advance Planning”, what this would mean for me and how to communicate this with my loved ones. The aim here is to do this early so I don’t have to worry about it in the future and at just 50+, I don’t yet consider myself to be in my old age, despite some system conditions or national definitions!

I’ve been reflecting on how we spend a great deal of time in “birth” planning, we have our birth plans, we have our mid wives sorted out, we choose how and where we will give birth, we check out the birthing centre and we may choose this over a home birth. Midwifery services give us a choice of having a home birth. We avoid having babies in hospital unless it’s absolutely necessary. How often do we avoid dying in hospital? This too surely is a choice? How are health and social services looking at this, how are people informed about their choice and opportunity to jointly plan for this? It is positive that health and social services are planning for this. The Palliative Care Project Board in Powys, chaired by Alan Lawrie, Director for Primary and Community Care within the PTHB, is helping bring this agenda together. Within some local hospitals, there is a plan to create “palliative care suites”, which will offer people more choice.

Birth and death fuel the cycle of life. I find it interesting that we spend a great deal of time anticipating, looking forward to, planning, speaking about, anticipating with joy a birth, but we avoid so often this process in relation to death. Could this be looked at with anticipation, after all it’s the one thing we cannot avoid, it’s going to happen whether we like it or not? Who do I want with me, holding my hand? Where do I want to die? I can’t predict how, but neither can we in a birthing experience, we can only plan and aim for the best experience, exactly as we would wish. What would our “gas and air” be in relation to dying?

In a recent Befriending Network meeting we spoke about the concept of doulas (or midwifery for dying) and having people, perhaps people trained as dying partners or supporters, sitting with people who are dying, supporting family members. Having sat with a great uncle, who was moving in and out of life having turned 92 in recent years, it was an amazing experience to sit and hold his hand for some hours, just being totally present with him.

Everything whittled down to being acutely aware of the senses, of the here and now. What could he see when he sat up suddenly and fixed his gaze at something I couldn’t, what did he mean when he clutched my hand, was he cold or too hot, did my singing soothe him, did he hear me when I spoke with him about how grateful I was for him in my life?

The meaning of “palliative” is to relieve suffering and we tend to equate this with end of life. But surely “palliative care” means offering this at any time in life, not just when we are dying? Alan Lawrie recently said that “health and care services only have one chance to get it right at the end of life”. He goes on to say we need to encourage people to speak more openly and plan for end of life care.

As I was thinking about dying, by coincidence (and in my opinion, there is no such thing), I came across a TED talk by BJ Miller which has profoundly moved me on death and end of life care. It is well worth the 20 minutes to reflect on this man’s heart stirring message.

Dying matters, it brings us closer to a full life experience and to living now. So, how are you planning one of the most important things you’ll ever experience in life, your dying experience? What really matters to you, in life, and equally of importance, in death?

I can’t finish this without quoting Neil Gaiman and Terry Pratchett, heroes of mine, from their book Good Omens. “Don’t think of it as dying, said Death. Just think of it as leaving early to avoid the rush”. Now that truly is anticipation!

Freda Lacey on her new role in the Health and Social Care (H&SC) team, PAVO

Handing over the role - Senior Officer Health & Social Care
L - R: Trish Buchan (now on Powys Teaching Health Board), Freda Lacey (new in post)

One of my Health and Social Care team colleagues recently said to me that I should introduce myself to the Sector and tell people who I am. Because I’ve worked for PAVO in the Mental Health team for several years, I’ve assumed people know who I am. However, I recently met and had a very good conversation with the manager of the Brecon Volunteer Bureau who hadn’t heard of me before, so, I thought it probably was time to make myself more widely known.

The role

I have been recruited to fill the vacancy of Senior Officer Health & Social Care, as left by Trish Buchan who is now the Third Sector Organisation rep on the Powys teaching Health Board. At the time I started the nature of the role needed to shift to respond to current changes within procurement and commissioning, both in terms of the national context with new European Union guidelines, and locally, as more joint commissioning initiatives between the Health Board and Local Authority are developed.

I’m in the 7th week of being “inducted” into my new role and, in many ways, I feel familiar and comfortable with the direction of travel. I’ve been reflecting on the changes I’m witnessing and while the nature of the work is somewhat different to what I had been doing within my previous role in Mental Health, this new work also relies on a foundation of forming good relationships and engendering open, timely communication between the Sector and our colleagues within the Health Board and Local Authority.

My role can be broken down into several key activities:

• To help broker possibilities for collaboration within the commissioning process.
• To act as a conduit for timely information and response.
• To offer general and focused support to organisations and networks responding to business development opportunities.
• To represent the third sector on strategic management boards with Health Board and Local Authority colleagues.

Ultimately I am there to help ensure that voluntary organisations involved in Health and Social Care are engaged and equipped with what they need to respond quickly to changing needs within public services.

This is me 

So who am I personally? I’m drawn to use a process/initiative which forms part of caring for people who have been diagnosed with a dementia to help me tell you who I am. Publicised by Alzheimer’s Society, their “This is me” activity provides the tools for telling the key parts of someone’s life story. I’ve found the process very fruitful as an exercise in self-reflection and hope that it gives you a flavour of who I am - you can read it here. 

L - R: Freda Lacey, Claire Powell, Anne Clark, Ruth Middleton - Health & Social Care team

Who are we as a team and what are we about?

Pete Lathbury is the Head of Third Sector Support and as such helps give our team direction.

There are four of us (two part-time and two full time) in the Health and Social Care team. Myself, two third Sector Brokers – Anne Clark and Claire Powell, and Ruth Middleton who helps collate and provide vital information to the Sector on Health and Social Care news and manages our network events.

In reflecting on my first seven weeks’ highlights:

• I have helped plan and deliver a recent Health and Social Care Network event.
• Attended a Virtual Ward meeting in the North in addition to engaging with the Third Sector Brokers as they attend others that are being developed or rolling out rapidly.
• Helped facilitate two Sector meetings with colleagues providing Carers’ Services that are being recommissioned by the Council.
• Initiated 10 meetings with Sector, Local Authority and Health Board key influencers.
• Met with the Local Authority commissioner and Disability Powys relating to the Physical Disability and Sensory Loss (PDSL) commissioning engagement strategy.
• Met and discussed service level agreements with three Health and Social Care third sector organisations delivering services for older people.
• Attended a scoping workshop with the Health Board looking at their Strategy for Consultation and Engagement.

Freda updates attendees at the recent Health & Social Care Network event

To say my first seven weeks have been eventful would be an understatement and yet, I am finding the work very varied, interesting and exciting. I am also endeavouring to be mindful of my capacity, that of the team and balancing priorities.

The process of change, in having to respond to the Council and Health Board’s challenges about reducing costs, the needs of the citizens of Powys, and the current landscape of shifting more public services into and onto the community, are all driving the strategic public agenda forward at a rapid rate of acceleration.

While there are always opportunities in transforming services, there are also threats to the ways things have currently been and expected to be (sometimes for years) and the levels of discomfort and fear that rapid change engenders cannot be under estimated.

One of the important parts of my role, and the team’s going forward, is to ensure that we provide timely communication about what is happening, provide a forum for sharing information, and ensure that the Sector can jointly collaborate within local, strategic service planning and delivery.

I am very much looking forward to getting to know Health and Social Care colleagues in more depth and gaining greater understanding of the pressures being faced. I welcome open contact, communication and feedback.

So do get in touch by emailing freda.lacey@pavo.org.uk or calling 01597 822191.

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….

Comic Relief award of £110,605 for Powys project to develop Mental Health Networks

PAVO's mental health team celebrates news of the award
Back: Glynis Luke, Jane Cooke, Freda Lacey
Front: Jackie Newey

Shaping Our Services - "Together For Powys Mental Health" 

Local Participation Networks

Powys Association of Voluntary Organisations is pleased to announce that it has been awarded £110,605 from Comic Relief for a three year project, to be managed by the mental health team, to develop local mental health participation networks around Powys. The work is being funded under Comic Relief’s Fairer Society theme, which aims to: “empower and give a voice to marginalised groups of people, enabling them to challenge injustice and bring about positive changes for those who face discrimination and stigma”.

Freda Lacey, our team's Participation Officer, who worked on the funding bid to Comic Relief, told me more about the new project.

“Our county mental health participation network has made a positive difference to marginalised people’s lives since 2010. Using principles of collaboration and co-production, we have successfully challenged injustice and ensured that people excluded from decision-making processes have had their voice heard and been involved in shaping services both in Powys and nationally.

This county-wide work has identified the need to develop participation networks in local communities. Here people face local problems sometimes not appropriate for county discussion, they lack confidence to participate at this level, and are unable to access meetings centrally or to participate remotely. Statistics show that we only reach 10% of people in contact with services as the majority live in more rural areas.

Decisions about mental health services are being made nationally, but 90% of people in Powys currently do not know how to ensure their voice is heard at this level. This means that they cannot participate in decisions that affect their lives. In 2013 we recruited local individuals to participate on local/national mental health strategic decision boards. These individual representatives require local networks to be in place to listen and share with other people, from all ages, in contact with services, and those close to them, to ensure that they are reaching as many people as possible in local communities. This not only empowers grassroots community voice but also supports the individual representatives as carriers/channellers of that collective voice.
 

Freda (far left) at Comic Relief HQ in  London on February 5
meeting people from other award-winning projects

People will use their lived experience to make a positive difference, to their own lives and the lives of others. Their voices, lived experience, and skills will be used to help reduce the disadvantages, discrimination, social inequality and stigma faced by people experiencing mental distress and influence and improve services and opportunities available to “all of us” across Powys.

Participants in the project will increase their negotiating, listening and influencing skills and their understanding of public sector delivery, decision making and strategy. People in Powys, from children to older people, will know how to access local, county and national participation opportunities. They will know how to speak out and get their voice heard, and how to actively engage with those working in mental health services and help shape service delivery."

If you would like to find out more about mental health participation opportunities in Powys, please take a look at the Getting Involved pages on our website here.

You can find out more about the work of Comic Relief here, and Red Nose Day Friday 13 March 2015 here. 

Make your face funny for money!

                                 
Red Nose Day comes along every two years and combines two very British things: having a laugh and helping others. Be it at school, work or home, people across the land put on Red Noses and pull out all the stops to raise as much money as possible. Then, once everyone’s run out of fundraising juice, they tune into BBC One for some top entertainment from their favourite comedians and to donate even more cash! And why do they do it? To help poor and vulnerable people living incredibly tough lives both here in the UK and across Africa.

Update: The Participation Worker post related to this project is now being advertised. Closing date 7 April 2015. More info here.

A visit from the Older People’s Commissioner Office

Earlier this summer Kate Hughes, who works as the Engagement Coordinator for the Older People’s Commissioner for Wales, visited some of my colleagues at PAVO to find out more about our work. She later wrote a blog post about her visit for the Older People’s Commissioner for Wales’ website and with her permission we republish it here. In the post Kate highlights “some of the excellent work underway in Powys that is making a big difference to people’s lives.”

I visited Powys Association of Voluntary Organisations (PAVO) in Llandrindod Wells to spend the day with Freda Lacey, PAVO’s Mental Health Participation and Involvement Officer, and Barbara Perkins, their Community Voice Officer. They were keen to tell me about some of the outstanding work going on across Powys, supported by PAVO, which helps organisations and improves lives.

Powys is the largest county in Wales, covering a quarter of its land mass, but it is also the least sparsely populated with an average of 26 people per square kilometre. The result is a beautiful rural landscape with soaring mountains and acres of wilderness to explore. There are several population centres, including Newtown, Welshpool, Llandrindod Wells and Hay-on-Wye, but many people live in remote areas that are hard to reach. The result is a patchwork of services that cover the county and a real postcode lottery about what is available to you based on where you live. The Commissioner often talks about people being in the ‘lucky’ or ‘unlucky box’ and where you live in Powys and whether you have easy access to transport, can be critical factors in determining which box you are in.

The importance of being able to access transport is highlighted by the fact that there are no District General Hospitals in Powys, so people often have to travel long distances and across borders for diagnosis and treatment. They also told me that older people whose spouses or partners are very ill in hospital often struggle to make the journey to Birmingham or Wrexham and that there have been reports of discharge in the very early hours and a lack of discharge planning.

Rural isolation is also a huge challenge as people often live at some distance from friends, family and community services. There have been projects set up to tackle this and to help support people’s mental health and wellbeing. Freda and Barbara had time to tell me about some of their favourites:

1. Mid Wales Food and Land Trust: Good Neighbour Project

This project helps people to do their shopping. Volunteers phone up to find out the items people need and let them know about special offers etc. They will then shop locally, deliver and unpack the items people have ordered.

2. Powys Mental Health Participation and InformationService

This is a wide-ranging service that has really helped service users to get involved in designing and delivering mental health services.

They bring services/(senior managers) and service users/carers together in local communities so they can discuss and resolve any problems, if possible, locally. This is a great example of using patient experience, rather than complaints, to drive improvement.

3. Powys Befrienders

This service focuses on people over 50 who are lonely, isolated and risk losing independence.  Volunteers work with people for up to a year and support them to become more involved in their communities. Once volunteers have been matched, they help people to identify groups and activities they want to try and support them to try out them out. They try to help people find social activities they can continue to enjoy long after their involvement has ended. This project is funded by the Big Lottery Fund, and is running until October 2016.

4. Dementia Supportive Communities

There are a range of initiatives to help Powys become a more supportive place for people with dementia to live. Hay-on-Wye/Brecon  is trailblazing the way to implement Dementia Friendly Communities in Wales.  The aim is to help people and organisations in local areas to better support people with dementia. An example of some of the initiatives linked would be the Butterfly Scheme, which provides training in dementia care within hospitals and is based on the “Reach” programme.

Many thanks to Freda and Barbara for a fascinating day. I have just skimmed the surface of Powys in this blog, but I was struck by the range of innovative solutions people in Powys have found to providing services in such a challenging landscape. I would like to end with a final thought from the Commissioner, “"When we get it wrong, the price is never paid by the service, it's paid by the individual and is far too high".

The situation in Powys may be challenging, but it is heartening to see that so many people are trying to get it right.

Tell us what you think in the comments box below about some of the issues that Kate has raised in her blog post.

Powys voices count at the top

   

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.

What does participation mean to you?

by Freda Lacey

The Powys teaching Health Board (PtHB) pays Powys Association of Voluntary Organisations (PAVO) to promote, enable and facilitate “participation” in the design, planning, delivery and evaluation of mental health services in Powys.  It is my role as the Participation Officer in the mental health team at PAVO to carry out this work. At the end of this past week, I’m questioning whether what I’m doing, after just over a year in my job, is effective.  I’m really not sure.  As I sit here today reflecting on my week, I’m really seeking to understand what is “participation” and more importantly, how we “do” this in relation to mental health.

Last Thursday, I attended a Mental Health Planning and Development Partnership meeting, chaired by the PtHB.  I had been asked to deliver a paper on “participation” at the meeting, as active participation by individuals and carers in this partnership is a requirement under the “Together for Mental Health” strategy and delivery plan for the Mental Health Measure.  This particular meeting has led me to question, “What is participation?” as people in the meeting grappled with and challenged the way I propose “participation”.  What is meant by true participation, what is understood by it?  In many ways, I’m being confronted to define what I understand it to mean, after all, I’m being paid to enable participation to happen.

While there are many organisations which promote and develop participation in Wales, I went online to see what came up when I searched “participation” as if I knew nothing about the subject.  The first link took me to Wikipedia, and says it may refer to, decision making, ownership, philosophy, finance and eparticipation.  I drilled down into decision making and it further says, “for well-informed participation to occur, it is argued that some version of transparency, e.g. radical transparency, is necessary, but not sufficient. It has also been argued that those most affected by a decision should have the most say while those that are least affected should have the least say in a topic”. 

I looked at the rest and “ownership” and “finance” are boringly “money” oriented so not helpful to me (or you) here.  The, “philosophy” link took me to a deep spacey place, I’m not sure I can explain it very well, but when I finally came to, I was thinking of passive vs active participation.  It made me reflect on what happens if we don’t participate, if we’re passive.  This can lead to decisions or action being taken that is “done to us”, rather than us being involved and feeling powerful in the decision making process affecting us.

A common “model” that is often used to define “participation” is that of Sherry Arnstein.  While there are others who’ve developed her model, I think hers is fairly easy to understand.  It looks like this.

I personally think there is a difference between engagement and participation.   For me, engagement means different ways of getting people involved in participating.  For example, you could use a blog to engage with people (hopefully).  There are innovative ways of engaging with people, through the use of eparticipation (electronic) mechanisms, such as Twitter, Facebook, email, websites, electronic surveys, YouTube, etc, but not everyone has access to these and more importantly, there are people in Powys who just don’t want to engage with services in this way.

True participation has to enable all ways of engaging with people, most especially, I feel, in face to face dialogue.  The more we rely on eparticipation as the only way of engaging with people, the more we remove ourselves from that face to face opportunity of conversing, listening, having open (transparent) dialogue with people.  For me, true, active participation, means personal (people) action.  If I look at Sherry Arnstein’s model, it’s the degree of “citizen power” that means true partnership, delegated power and ultimately, citizen control.

The more we enable links of personal contact between decision makers and those who are most affected by the decisions which are made, the more we move towards true partnership with delegated power and control in how mental health services are shaped.

After much reflection, I cannot enable participation without active people (citizen) power.  It is down to me to use the widest engagement tools possible to ensure this happens.  It’s down to me to ensure that I stand firm in promoting individual “participation”.  Who do I ultimately stand for?  It’s the people affected by mental health services in Powys.  If you want to start a movement, now is a good time, let me know?

"Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has." - Margaret Mead.

You can link to the National Principles for Public Engagement here.

What you said about the Powys Vision for Mental Health

In an earlier post I spoke about the consultation work that my colleague Freda Lacey and Eleanor Barrow from Powys Mental Health Alliance had done around the draft Powys Vision for Mental Health.

Well - people turned up to the events that were organised and spoke passionately about their views on mental health services. They told their personal stories, spoke about what worked and what didn't, about changes they would like to see, and the gaps in service provision (such as an out-of-hours service in the North of the county).  They raised other issues such as benefits, transport, and housing, for example, and explained how these also impacted on their lives and their ability to recover from mental distress.

"The key message from ..... across Powys is that people keep saying the same things. Overwhelmingly, the voice of individuals across Powys is, "HOW? How are the aims of the "Vision" going to be translated into tangible results? How is Powys teaching Health Board going to provide services as close to home as possible, out of hours/crisis support, enable people to build up their personal power and strength in relation to their mental well-being, learn what individual recovery means, receive the information, support and services they need?"
 
You can download and read the full report here.

Taking risks to engage service users

My colleague Freda Lacey, who is the Development & Participation Worker in the team, recently attended a networking event run by Participation Cymru to talk about engagement and mental health. She drew upon the team's recent experience planning and running an event called Making a Difference Together, which was held in Newtown on 16 May 2012. You can find out more about the actual event here on our website.

At the networking event Freda spoke for about 30 minutes on the innovative approach taken by the team to engage with people who experience mental distress. She particularly highlighted the importance of taking risks - and "thinking outside the box" - when planning events so that people can really let their voice be heard.  You can listen to a recording of her presentation, and see her slides here, on the Participation Cymru website.

The conference Freda describes was one of three events held throughout Wales and supported by the Stronger in Partnership network and NLIAH (National Leadership and Innovation Agency for Healthcare). Individuals had the opportunity to talk to representatives from social services, the police, Citizens Advice Bureau, psychiatric and psychology services and say exactly what they thought about the services provided. One of the people who attended wrote passionately about his experience of the day:

"I came home yesterday absolutely shattered but full of hope.  I learnt more yesterday about Mental Health and indeed myself  in what seemed like a few very short hours, than all of my ten years fighting the illness and the system.

I don't normally write letters of praise but you and your team have taken the system and given it a good old shake up and to give us "a voice" - fantastic!  Until yesterday I thought I was a "Victim"..... 

I know the hard work that goes into an event such as this. What impressed me was the "loose format".  The fact that all of the Survivors, who like me struggle at social events, it is a great testament to you and your team that we were still there for the close of the event."