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.

White Rabbit Number Six: John Drake's Mental Health Blog - 3

3. One Flew over the Benefits' Trap

A friend who was involved with Mind first told me about DIY Futures at a crucial juncture: the back-to-work programme in which I had been enrolled had come to an end and I was missing the support my advisor had given me. His view was that, given my anxiety levels, my best hope for work was to negotiate a gradual increase in my hours with my employer (who, to be fair, had stuck by me throughout these years); I would find it too stressful, he felt, to try alternative employment. But now I was faced with another Work Capability Assessment, at a time when I could barely manage the three-hours-a-week employment that I had already.

Fortunately it was very easy to enroll with DIY Futures and my mind was immediately put at rest when my DIY Futures advisor offered to accompany me to my WCA and take notes of the proceedings. She also spent several sessions helping me to prepare beforehand (something I would advise anyone facing a WCA to do): making notes of all the things about my health which I felt were relevant in case the doctor failed to ask (which is what happened the first time).

Consequently, when I went for my WCA this time things were very different. The examining doctor (a different one, fortunately) said that my advisor could take notes as long as they were only shared by the two of us; and I can’t help thinking that the difference between the two sessions can be explained to a great extent by the fact that someone was monitoring exactly what took place. I was able to tell the doctor how I felt about my previous experience and he certainly seemed to ask more relevant questions (no mention, for example, of my viewing habits)! At the end, he asked if there was anything else I felt was important and my DIY Futures advisor mentioned a couple of things that I had discussed with her but which I had forgotten because, after an hour, I was feeling overwhelmed by it all.

A couple of weeks later I heard that I could stay in the work-focused group. Now that the pressure of the WCA was off my shoulders, I felt able to work with my DIY Futures advisor on developing a more positive approach to my situation. This included her referring me to a free counselling service with a trainee, arranged through Mind. As a result of this help I was able, over the next year, to increase my working hours to the extent that, when I was told I had to attend another WCA, I felt strong enough to say...no thanks!

It’s not easy to manage financially without Employment and Support Allowance (ESA), but working part-time means I get help with my rent and Council Tax and the loss of income is more than compensated for, I feel, by the gain in peace-of-mind that comes from escaping the destructive, blame-the-victim culture that has infected the way we treat people who have, through no fault of their own, a limited capability for work.

The recovery I have achieved so far has been won with the help of the primary care services – the continuous and consistent support of my GP and NHS counsellor, always there when I needed them – who showed me that the rabbit hole was not bottomless; with the help of my back-to-work advisor, who explained the system to me so that I could negotiate the strange bureaucratic Wonderland that is ESA; with the help of a sympathetic and supportive employer who repaid my twenty years’ service with their own loyalty to me; and last, but not least, with the help of DIY Futures and the Mind trainee counselling programme which have together enabled me, for now at least, to fly over the benefits trap!

PS: I know everyone does not get such good and consistent support – as I said at the beginning of my first blog, this is just one man’s experience of what happened when I fell down the well of depression – but I do know that we all need and deserve it. What we neither need nor deserve is the constant pressure of the Work Capability Assessments, accompanied by the sound-track of a media giving out the message that every application for help is written by a ‘benefit-scrounger.’

I accept that we need a fair system of assessing people’s needs and helping them back to work, if possible; but my own experience is that the current ‘reforms’ are not helping. I have what I hope are some constructive criticisms of the system and some suggestions for improving it – but they must await a future blog.

Black Cat project on ITV news

At the end of January this year I posted about Sarah Harmon's Black Cat project. Sarah is based in Presteigne in Powys, and has linked up with the Fixers Project - which supports young people aged 16-25 to tackle any issue that matters to them, however they choose.

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Sarah has written regularly on the TOWIP (The Only Website in Powys) website, written by and for young people in Powys, about her experiences. Yesterday's headline post was about Sarah launching her new project and her television debut:

"From the age of 16 Sarah suffered from an eating disorder and she also self-harmed.

Now on the road to recovery, Sarah has a positive outlook and is ready to raise awareness and support others who might be suffering from mental health issues themselves.

With support from Fixers, she is running workshops aimed at 16 to 25 year-olds in Mid Wales to try to eradicate the stigma surrounding mental health. She wants to encourage young people to talk about mental health issues and to discuss coping strategies."

On the Fixers website Sarah says: 

"When I was 16, I started experiencing mental health problems. It’s hard to describe just how low these conditions can make you feel and how difficult everyday life can become.

It’s improved a lot for me over the years, but I realise it’s a long road ahead.

Drawing on my own experiences, I aim to tackle the misconceptions surrounding mental health issues, so there is greater understanding and fewer barriers for young people to seek help.

By raising awareness, I hope people will become less judgmental about such conditions."

I've really enjoyed reading Sarah's fictional story as Black Star/Cara on the TOWIP website over the past few months, and it's great to see she has achieved her goal of setting up a mental health project for young people in Mid Wales. 

Here at Powys Mental Health we wish Sarah all the best for the Black Cat project in the future! 

White Rabbit Number Six: John Drake's Mental Health Blog - 2

2. I Am Not a Number

Going to the Job Centre when I was too ill to work seemed like a contradiction in terms – but this was the brave new world of New Labour and quite a lot had changed in the twenty years since I had last needed to claim any sort of state benefit, as I was soon to discover...

I will skate over the many mistakes that seemed designed to disorient me (the person on the end of the phone who told me that he couldn’t register me unless I could remember the postcode of the flat I lived in twelve years earlier – and then sent all my information to the wrong address anyway; the meeting in the open-plan Job Centre where I was asked how my depression affected me on a day-to-day level – as if my doctor would give me a consultation in the waiting room; the letter from the DWP telling me to send them a sick note by a date two months prior to the date of the letter)...

I realised that I had, in fact, fallen to the bottom of the rabbit hole and was now in Wonderland.

The good news was that I was referred to the government’s back-to-work programme. I was obliged to see an advisor for five sessions – and ended up seeing him every month for a year and a half because I found him so helpful. He did his best to make sense of the system for me... but there was still the hurdle of the Work Capability Assessment to be overcome.

I was interviewed by an elderly gentleman who I assumed was a retired GP. It was all over very quickly. He asked me some questions that seemed odd – such as what did I watch on TV? (Films and documentaries mostly, not that it’s anyone’s business) – but nothing at all about my symptoms, what had happened in work or what was stopping me going back.

To be honest, since I spent most of the 20 minutes I was there in floods of tears I assumed that he didn’t want to prolong the agony by asking unnecessary questions.

How wrong I was!

A month later I was told to attend a follow-up, work-focused interview, with the same doctor who assessed me the first time. He seemed surprised when I told him that I hadn’t received the results of that assessment yet, but said to put it down to bureaucratic bungling.

When another month went by and I still hadn’t got my result through I started to get very anxious and asked my advisor to help. He made a few phone calls and gave me the bad news. I hadn’t scored enough points to stay on Employment and Support Allowance (ESA) and I shouldn’t have been asked to attend the second interview.

A week later I got the official result through the post. The doctor had assessed me as finding life difficult due to being unable to cope with unexpected changes and had awarded me 6 points, 9 less than I needed to stay on ESA. I would no longer receive any benefits and had to talk to my employer about returning to work.

This “talk” had better be quick, since I now had no money coming in, but it was pointless anyway. There was no way my employers would allow me back to work without the say-so of my GP and there was no way she would pass me as fit for work... Desperately confused, I contacted my advisor who told me I should appeal since the decision was clearly wrong; and helped me draft the letter. At the worst, I would still get sickness benefit until it went to tribunal.

As it happened I didn’t need to go to tribunal because I got a phone call one day from someone who worked for the Department for Work and Pensions (DWP) who, after going through each of the reasons why I thought the assessment was wrong, told me that the decision would be overturned. About a month later I was told officially that I had been placed in the work-focused group, my benefit was increased and I also got a hefty back-payment.

Now that I was starting to feel a bit better about my situation, my advisor came with me to meet with my employer and negotiated some part-time work that I could do while still claiming ESA.

A year went by before they wanted to re-assess me. By now, the back-to-work programme had come to an end and I was no longer in touch with the advisor. Worried about the new assessment, I started obsessing about what had gone wrong the first time. Why had the doctor only given me six points? Things were not helped by watching the remake of ‘The Prisoner’ on TV. Perhaps I was Number Six, prisoner of a bureaucratic bungle that had turned into a nightmare...

Fortunately, just at that point along came Do-It-Yourself Futures...

White Rabbit Number Six: John Drake’s Mental Health Blog - 1

As the DIY Futures project comes to an end, the focus is on the stories in the book "It's the inside that matters," which have drawn some really positive feedback. But there are so many stories out there, and one book can never be long enough...  So when we heard about John Drake's experiences recently we invited him to write a guest post for the blog.  John soon came back to us with not one but three posts! Here is Part 1... with 2 & 3 due to follow shortly.

1: Down the Rabbit Hole

There is nothing so very remarkable about falling down that very deep well we call depression. What follows is just one man’s experience...

It was quite a relief when I was first diagnosed with depression. My initial reaction was: Thank God for that, I thought I was going mad! I was certainly getting fixated on some strange ideas and experiencing overwhelming feelings of dread which made it difficult to continue to work...and I loved my job.

My GP referred me to a Community Psychiatric Nurse. He assessed me as suffering from mild to moderate depression and recommended a short course of anti-depressants. But I was very resistant to the idea because I had heard so much about the bad side effects... Fortunately the nurse was very sympathetic to my attitude and suggested I instead try St John’s Wort (a herbal alternative to pharmaceutical medicine). My GP was also supportive of this and said that I should treat it like any antidepressant and use it regularly for six months.

After three weeks I felt well enough to go back to work and in fact, with the aid of St John’s Wort, I managed my condition for the next seven years, throwing myself into my work with renewed dedication. I still suffered from occasional bouts of anxiety but I knew that I had to just keep going...

Until one day I couldn’t... It was as if an abyss had opened up and I was about to fall into it.

I rang the surgery but my GP wouldn’t be available for a couple of weeks! I knew I had to talk to someone straight away and fortunately one of the other doctors had a cancellation and was able to fit me in. She listened to me for what must have been quite a long time (once the dam broke, the flood was overwhelming), signed me off work and referred me to the counselling service that was attached to the surgery.

And now that I was in safe hands, I could let myself fall...

I was offered what I understand to be the standard counselling service through the NHS, which is six sessions of Cognitive Behavioural Therapy. Towards the end of this period I was offered an extension of three further sessions, which I was happy to accept. When I first began therapy, my counsellor assessed me as having moderate to severe depression. By the time I finished the course, I felt ready to return to work. Although our sessions were coming to an end, the counsellor assured me that if I ever needed to see him again I could get a new referral through the surgery.

Throughout these first few months of illness, I had felt very well supported both by my counsellor and by the GP. At her suggestion, I continued to be seen exclusively by the same doctor who had been available on that crucial day – and I think that this continuity of service was very important in my being able to cope with day-to-day living, without being hospitalised – which, along with being forced to take antidepressants other than St John’s Wort, was my biggest fear. Rightly or wrongly, I believed that pharmaceutical antidepressants would take away my mind and that, once in hospital, I would never come out again.

The CBT sessions had taught me how to cope with going to shops and facing the dreaded ‘how are you?’ question from well-meaning acquaintances, but going back to work was another matter. Even though I had met with my boss and we had agreed a back-to-work strategy, it all fell apart when a personal crisis caused everything to unravel – and I was back almost, but not quite, where I started – still down the rabbit hole but resting somewhat precariously on a ledge – no longer falling, but not yet able to climb out.

This time my GP was adamant that I should take stronger antidepressants – but I was equally adamant that I wouldn’t. To her credit, my doctor accepted my decision and continued to support me in other ways. I was referred back to the counselling service and, this time, I was told that I could book a session whenever I needed it, through the appointments desk. I assume this was offered to me as my counsellor believed that I wasn’t the type to abuse the privilege – and in fact I only took advantage of it a handful of times.

Throughout this time I felt that I was being supported in the way that was right for me by everyone concerned in my welfare – and for this I will always be grateful.

Meanwhile, however, I was still being signed off work. Then one day I got a bit of a shock when the finance officer informed me that my sick pay had run out and that I needed to contact the Job Centre about claiming long-term sickness benefit.

And that’s when my problems really started...

DIY Futures: the library tour

When’s the last time you stepped inside a Powys library?

I was at Welshpool Library last week for the launch in the library service of the DIY Futures book – It’s the inside that matters - which Jane wrote about in January…  And a whole group of us chatted, drank tea, munched on grapes and digestive biscuits… and generally had a good old chinwag about the book, the Light the Way (mental health action group) meeting later that afternoon, the benefits of volunteering, and how many of us had lost freezer contents to the power cuts of the previous week… 

Which was great.  But what we noticed was… how different it felt to library experiences of the past. No one said “Ssssh!! Be quiet, you’re not allowed to talk above the level of a whisper in here…”  No one told us to pack away the nibbles and clear out with our cups…  Instead we were made welcome to share the content and success of the book with other library-goers and staff in our own DIY way. 

Many of the beneficiaries of the DIY Futures 1:1 service, which came to an end in March 2013, were there. Two of them gave short readings from the book. The event was accompanied by an exhibition of artwork created especially for this unique publication:

"This artwork was produced through a series of visual poetry workshops run by Celf o Gwmpas using their artist in residence programme. The workshop leader was Sean Burn, an outsider artist with a growing international reputation. His work challenges the language of racism and “reclaims the language of lunacy”; emphasising the way in which the language of illness pathologises natural responses to the ups and downs of life and for some people extreme circumstances, such as abuse, violence and neglect.

These challenges to established thinking parallel the work of DIY and the book. Instead of starting with symptoms and diagnosis, set ways of being told by someone else – this is who you are – the work of DIY started with the person – who you are, what do you want to change and what support do you need." Jane Cooke, DIY Futures Project Manager

This event is one of three taking place in the county libraries as the DIY Futures project draws to a close at the end of March 2014. Colleagues were welcomed at Ystradgynlais Library last Thursday, and are looking forward to attending Brecon Library on Wednesday 26th February (with the added bonus of a trip to The Hours café to look at the artwork and eat cake). 

The Powys library service has welcomed the book into its collections enthusiastically, and we would like to thank the staff for their support in this and the book’s ongoing promotion.

If you would like to borrow the DIY Futures book, each Powys library now has a copy in its lending collection. If you prefer to read books on a digital device such as a laptop, tablet, ebook reader or smartphone, we are working on an ebook which we hope will be available soon.

Have you been to your library lately? Tell us what you think, and the sort of books you would like to see stocked on the shelves alongside It’s the inside that matters.

Chatting to library staff about the DIY Futures book It's the inside that matters

Life on the ward: the patient's voice

This week Rhydian Parry tells us about volunteering with Powys Patients’ Council at Bronllys Hospital in South Powys.

I have been a volunteer with Patients’ Council for about a year and a half. I have first-hand experience of what life on the ward is like, having been a patient at Bronllys several times over the past eleven years. I know how tough life can get on the inside and how big an impact seemingly trivial stuff can have. I’m lucky to be in a position where I can try and use my experience of being on that ward from the age of 17 to help others and ensure that the voice of the patients at Bronllys is heard and represented.

We had a very productive meeting last time on the 11 December. It gave us a huge amount of information to take forward and highlighted the importance of some issues that have been consistently coming up. Some are in the process of being dealt with at the appropriate levels such as the lack of activities on the ward. It is an issue we have been working closely with senior and ward managers for a while and are now at a stage where discussions are taking place with Brecon and District Mind (formerly Brecon & District Contact Association - “the Loft”) amongst others to provide structured activity on the ward, as well as some in the community.

The need for a quiet room is another prevalent issue which, sadly, still has not been sorted. We are currently waiting for the walls to be painted; this needs to be done before anything else in the room and is holding the whole project up. I just hope that work can begin soon.

Many people raised issues around the weekly case conferences. It was felt that these were already very intimidating and asking whether patients minded student doctors being there when arriving was too late. People found it very difficult to say 'no' face to face with the students. Having a tick box on the pro forma was suggested by a patient and passed on to the ward manager. She agreed that it was a good idea and will be adding one to the form straight away.

Concerns were also raised around a perceived neglect of patients’ physical health. These were passed on and I was informed that a ward-based doctor was due to start on 23rd December. This will hopefully alleviate the situation somewhat.

It's also important to recognise some of the actions that have been completed over the past year. Good examples of these are having a decent TV, wall mounted and working well making a big difference to the dayroom, and the Mobile Phone Policy. Patients had only very restricted access to their phones and it was a difficult issue to overcome. But, after a lot of hard work, we now have a new Mobile Phone Policy which does allow patients to have access to their phones.

I would also like to thank the staff on Felindre ward at Bronllys. Not only do we hear a lot of good things said at meetings (although people would love more staff!) we are made very welcome when we visit, ensuring we have the ideal room and we also have a healthy working relationship. Without effective co-operation positive action and changes would be very hard to come by.

Many thanks to Rhydian for his insight into the Patients’ Council operating out of Bronllys Hospital in the South of Powys. Patients’ Council aims to give a voice to Powys residents wherever they are offered acute in-patient mental health services - you can find out more, including meeting notes, on our website. And more good news - some of my colleagues are currently working to develop a similar arrangement to give a voice to patients in the North of Powys.

How important do you think it is for patients to have a voice?