Showing posts with label hearing voices. Show all posts
Showing posts with label hearing voices. Show all posts

Friday, 25 July 2014

Volunteering while getting benefits


The title of this blog post is also the title of a UK government guide which can be downloaded from the internet here. Quite simply it lays down the rules around volunteering whilst on benefits:

"If you’re getting State benefits, you can be a volunteer and, in nearly all cases, your benefits will not be affected. However, there are some cases where your benefits can be affected, for example, if you get a subsistence allowance or if you’re doing what someone else would normally be paid for."

And yet people who are receiving benefits are sometimes made to feel – by society, by people they know, by workers at the Job Centres they attend - that if they are able to volunteer then of course, they should also be able to work.

Jan Rogers receives benefits and volunteers for the mental health charity Ponthafren Association at the organisation’s centre in Newtown. She is not in paid employment at this time. She wanted to share with a wider audience the value of volunteering to her.


Without going into detail of what, why and where, I will just say, when I first became unwell, I could see NO way out. Well, in fact, I did find a way out and that was to end “it”. To put a stop to the hassle and grief I was causing to my family.

Sometimes I think I functioned quite well in the sense that food was always on the table and the house and children were always clean, at least when they left the house. But I wasn’t living, it was existing - going through the motions. When my husband was in work I would quickly do housework and what I needed to do and then hide. Sometimes I would lie under the bed all day watching the clock so that I would be out in time to cook tea and pick the children up. This was harder when I had younger children so I used to draw the curtains and sit and interact with the children hoping that they would not pick up on how I was feeling. This worked for a few years but every time one of the children called me “Mum” I cringed.

One day Hell had just opened its doors. I went from a person who was out going and enjoyed life to almost becoming a recluse. Although I made sure the children and hubby were fed and looked after, I was sinking into a dark, dark world. I did not bathe or eat until I was so light headed I couldn’t function. My husband gave up his job and although he was amazing he was looking for answers to the complete change in a person, which to him had happened “moreorless overnight”.

I was regularly taken to hospital and sectioned and stays varied from one to three months in the early days. As time went on, with my husband’s and family’s support, and the help of the Community Mental Health Team, I was able to function slightly better, but each day was a struggle for us all. Sometimes I would leave the house and seem and feel okay, drop the children off at school but then, a dark cloud would surround me and I had no idea where I was or who I was. My husband would phone the police after looking, sometimes all night, and I would be back in hospital on a section.

I felt my life was over and although I was lucky in a sense that I had a great supporting family, this in one way was making me feel more guilty as I was letting them down and just causing more grief to the people that were at my side and holding me up. 

Jan in the garden at Ponthafren

All I kept thinking was why, why, why?

About six or seven years ago, I took my youngest sons to football practice. I was standing on my own, not really wanting to get into a conversation with people. There was a woman there, who I did not know, she seemed to be in charge of the football sessions. I remember the day well as it was windy, cold and raining, real football weather. The lady came across and introduced her self as Nicky Morris and explained that she was chair of the junior football club, Newtown Whitestars.

We got chatting and this was the first time I had really trusted anybody outside my family. I felt I could talk to her as if I had known her for a lifetime. Nicky went on to explain that she was Co-ordinator of Ponthafren Association , which was a registered charity for people with mental health problems. She suggested I pop in for a chat and see what Ponthafren had to offer for me. I was always very much into my sport, gym and running as well as a very keen gardener.

I went along to Ponthafren with my hubby and met up with Nicky and Jane and chatted. I said I would love to come along to the centre but needed a purpose. Nicky suggested volunteering for a couple of hours a week to go along with people to the gym. So, this is what I did. Mike was always outside at least half an hour before I was due to be picked up as he was very worried.

Over quite some time, I was volunteering more hours and even though some days I would not go in as I was feeling unwell, generally I felt a small sense of achievement. As time went on Mike was feeling more relaxed and able to take a step back. He too then became a volunteer at Pont. I think we sometimes forget about the person that has cared and carried someone with mental health illness for such a long time and almost expect them to pick up where they left off in a sense. This is not reality as when Mike gave up his job he gave up his “Life”, in the sense of friends, associates and a social life.

At Ponthafren I can be myself, I don’t have to pretend at all. If I want to smile I can, but at the same time if I don’t feel like smiling or putting on a face for people, then I don’t feel like I have to.

Some of the things I deal with every day and night:

  • Sense of worthlessness.
  • Scrounger to society/tax payers as I should be working.
  • Sense of letting my family and friends down.
  • Voices.
  • Hallucinations, to the degree of bathing in shorts and tee shirt and dressing inside a large robe that is zipped up the front, from my neck to the floor. 
  • Not sure if I’m having a conversation with real people or not.
Some of the things I feel and have partly gained by volunteering are:
  • Self worth.
  • Confidence.
  • Self-belief.
  • Passion for believing in my principles and beliefs and the fact that they do count.
  • Helping my family understand my “illness”.
  • Helping “ME” understand my “illness”.
  • Being “Who” I am, and most of the time thinking, “others will have to accept me as is”.
I have been nominated and won awards but although I am very grateful for being put forward and gaining these awards I personally (it has taken me years to accept praise and to be honest, deep down, I still cringe even though I smile) feel that these awards I accept are on behalf of every volunteer I know. This, I feel, is how I am able to accept them.

Why do I volunteer?

At the moment I don’t think I would be able to cope with employment. I’m not sure it would be fair on an employer or me. I have never and never will be happy with myself drawing benefits but volunteering goes some way for me to prove my worth to Government, Job Centre, tax payers. I have received, and continue to do so, so much help from Ponthafren – and this is one thing I can do to part pay back for all I receive.

I volunteer in the garden because I am a keen gardener and others get so much out of the garden at Ponthafren. Some people have no garden or in fact a seating area. With volunteering, if somebody asks me to do something, I do not have a problem asking them to write it down if I’m not sure what they said and they don’t mind doing this. As an employee, this would not be okay.

Basically I volunteer because I can. I have failed so much over the years, in most aspects of my life. Volunteering, I feel I do not fail at all. Maybe I can make a difference to someone else!!!!

‘Volunteering’ = Coping , Living, Surviving, so really it is NOT Volunteering in my Mind or Heart !!!!!!

Thank you, Jan, for sharing your volunteering story with us. If you would like to find out more about volunteering, contact the Powys Volunteer Centre which is managed by Powys Association of Voluntary Organisations.

Are you on benefits? Do you volunteer? Tell us about your experiences in the comments box below.

Tuesday, 16 July 2013

Jacqui Dillon heads to Mid Wales

I’ve just finished reading a brilliant book called – "Agnes’s Jacket" by Gail A. Hornstein, Professor of Psychology at Holyoke College in the USA. It’s about Gail’s investigation into people’s experiences of mental distress, and at times it reads more like a detective story than an academic piece as with as open a mind as it is possible to have she enters and explores “a vibrant underground network of ‘psychiatric survivor groups’ all over the world.”

Jacqui Dillon features prominently in the book as the Chair of England’s Hearing Voices Network – Gail’s enquiries take her to many of the HVN meetings and events. At one Jacqui says: “I have come to view hearing voices as an adaptive and creative strategy, an example of the persistence of the human spirit to survive in the most extreme circumstances..... My hearing voices was a perfectly natural response to the sadistic torment I experienced. Psychiatrists should stop asking, what’s wrong with you? And start asking, what’s happened to you? That’s what we do in HVN support groups.”

I’d come across Jacqui online before, as she features regularly on a favourite website of mine - Mad in America – but search online for any information about hearing voices and her name soon crops up. Jacqui is “a respected campaigner, writer, international speaker and trainer specialising in hearing voices, ‘psychosis’, dissociation, trauma, abuse, healing and recovery.” And her own website is not just an excellent resource for anyone wishing to find out more about the hearing voices movement, but tells a powerful personal story – “of surviving childhood abuse and subsequently using psychiatric services (to) inform her work.... she is an outspoken advocate and campaigner for humane, trauma-informed approaches to madness and distress.” 


So I was delighted to discover that Laura had booked Jacqui as the keynote speaker at the Mid Wales national Stronger in Partnership event (“Shaping Services”) on 19 September in Llandrindod Wells. This event is one of three organised by our Powys Mental Health team here at PAVO and funded by Welsh Government and Public Health Wales. Individuals, carers and staff are invited to share their experiences and views about services, and find out more about what is proposed nationally. (Last year’s event was in May 2012 in Newtown - Eleanor Longden spoke inspirationally - you can read more about the day here).


Laura tells me that this year’s themes are:


  • All age participation – to fit with the national and local mental health strategies.
  • Children and young people feeling more confident to support each other through mental distress (for example, self harm, hearing voices, sadness, and anxiety).
  • Welfare Reform – how are the changes affecting people in contact with mental health services and those close to them? What can we do to make a positive difference to improve their experiences?
  • National and Local Mental Health Partnership Board Strategy, Implementation and Participation. 
You can find out more about the conference here. So many interesting issues and topics to discuss, AND Jacqui’s keynote talk….

And so, back to Jacqui… The Hearing Voices Network has joined the debate which has been active on here lately -
about the medicalisation of mental distress. Jacqui writes, as Chair, that “psychiatric diagnoses are both scientifically unsound and can have damaging consequences..... People who use services are the true experts on how those services could be developed and delivered; they are the ones that know exactly what they need, what works well and what improvements need to be made. This is not just an academic or professional issue – it’s one that affects our lives.”

So, for anyone interested in pursuing this debate – make sure you book your place at the event as soon as you can - BOOKING NOW OPEN HERE – a quick reminder of the date as I can hear the rustle of paper diaries and clicking onto online calendars….., that’s Thursday 19 September, The Pavilion, Llandrindod Wells, and we really hope to see you there!


Any queries, just get back to us – as always – by commenting below or emailing:
pamhinfo@pavo.org.uk, or ringing 01597 822191 or 01686 628300.

Monday, 4 March 2013

Hearing the Voice


Saturday was a rare sunny day so it was destined to be a garden day. However, before heading out to attack some really vicious brambles overshadowing the bean poles, I caught an interesting feature on BBC Radio 4’s Saturday Live programme. A programme guest, Adam, was talking about his experience of hearing voices. (The 12 minute segment starts at about 39 minutes in).

“I have another person living inside my head," he said. "I’m not just hearing a voice I’m seeing a person..... the Captain of my universe..... He is dressed as a Second World War German U-boat captain. He looks like me. He has a scraggy beard... " Adam went on to describe the implications of living with the Captain inside his head. "He has cost me relationships, he has cost me money, he has cost me so much.... "

Adam was posted with the Royal Artillery in Iraq in 2003 – 4, but described this experience as “a walk in the park” compared to the Post Traumatic Stress Disorder he experienced stemming from the time he was bullied at school. The Captain is not the friendliest companion in the world, as Adam goes on to describe. "It’s definitely a darker side of me.... it isn’t me, but it is me...”

Adam's experience of hearing voices has led to his involvement with the project Hearing the Voice: "an interdisciplinary project led by researchers at Durham University... (which) ...  aims to help us better understand the phenomenon of hearing a voice no one else can hear (a phenomenon also referred to as auditory verbal hallucinations) its cognitive-neuroscientific mechanisms, its social, cultural and historical significance, and its therapeutic management."

Those participating in the project talk to one another about what they hear, and work with academics, clinicians, healthcare practitioners, and others with "lived experience" as part of the ongoing research. Adam describes it as  "(The Captain's) turn to pay me back." The project website hosts an active blog, newsletters and links to other sources of support, including organisations such as Intervoice and the Hearing Voices Network.

Speaking publicly helps reduce the stigma surrounding voice hearing - "just because someone says horrible things inside my head doesn't mean that I am that person." Yet, if anything, Adam is reluctant to say goodbye to the Captain anyway:  “If he was taken away who would I be then? My identity is a voice hearer - that's who I am.” The main thing he wants people to understand is that the voices will "never ever leave you but you can still have a life.... you don’t have to be a constant prisoner to your thoughts. There are people out there who understand and who will accept you."

Monday, 20 August 2012

Eleanor Longden: Learning from the voices in my head

Some of you may have seen Eleanor Longden give an inspiring presentation at our Making A Difference conference in Newtown back in May.

Earlier in the year Eleanor was invited to present a short, 6 min talk at TEDxLondon on voice hearing - it's now online here.  She needs people to consider rating it and leaving some feedback. Talks with the highest ratings will be invited to give extended presentations at TED 2013 in California, so this would be a great opportunity for spreading the word.

At 17, Eleanor Longden had a promising future ahead of her; then she was diagnosed with schizophrenia. After a lifelong battle with the voices in her head, today she has a Masters in psychology and a second chance.