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...