Paid workers – a voluntary group’s “essential” or “luxury”?

Another debate that has been very much “in the air” recently, is about whether or not groups of people who come together to pursue a common goal should receive more formalised support, particularly in the early stages. This could apply to any type of voluntary group, not just those focusing on mental health issues. Just because individuals decide they want to work together to campaign, for example, for better or different services, does not necessarily mean that they have the skills required to set up, run and sustain the group.

Working at Powys Association of Voluntary Organisations for the last few years I have come across many people volunteering across all spheres – health, the arts, heritage, sport and more. The one thing which brings them together is their passion – in my own case, volunteering for The Quilt Association in Llanidloes, it is a love of quilts both old and new that is the common bond. In mental health people might want to press for new services in a particular geographical area, or provide support for a specific group such as carers, for example.

But... what all these people (including me), with their diverse range of interests and skills and goals, suddenly find they also have in common – is the need to skill-up fairly quickly on the day-to-day basics of running and maintaining a group and the implications that has for them all. This is particularly the case for those groups which decide to become charities, where legal and financial responsibilities can create a lot of work – work which has absolutely nothing to do with the original reason why the group was set up!

So, whether promoting heritage quilts or campaigning for increased mental health services... we suddenly all need chairs, treasurers, secretaries and incredibly hard-working individuals who don’t mind finding out the nitty-gritty about insurance, equal opportunities policies, expense procedures and so it goes on...

The question is, should some of these groups – in the area of health often referred to as “user-led organisations” - be provided with a paid development worker in the early stages to help them? According to the Social Care Institute for Excellence (SCIE) “strong user-led organisations help commissioners tackle inequality, build social capital, contribute to prevention, and be more responsive to the local community.” You can read some of the guidance given to people commissioning services to develop and strengthen these organisations here.

What do you think? Are you involved in a voluntary group yourself, or thinking of setting one up? (Wales Council for Voluntary Action has useful information here if you are).  And if you believe paid support is required on a regular basis – who is going to fund it?

PS: Whilst reading around the issues for this post I discovered that the Office for Disability Issues has a Strengthening Disabled People’s User-Led Organisations Programme - short-term grants to groups in the UK. “The programme is a £3 million investment over four years (until 2015) that will aim to promote growth and improve the sustainability of DPULOs.”  You can find specific advice for organisations based in Wales here.

Unconventional Wisdom: Are the mainstream ideas underpinning mental illness diagnosis as sound as we presume?

In case you are wondering – “where have the wonderful plasticine pictures gone?” - then let me explain. Jackie has temporally handed the "blog reins" over to me for this week’s blog, and artistic I am not.

So instead you get a picture of my hero, Thomas Szasz, who sadly died last year on September 8th 2012, My hero because his ideas changed the way I think about a lot of things in life, and his picture because of a debate that seems to be becoming more prevalent. 

In my earlier blog this year I talked about the mobile phone restriction at our local psychiatric hospital, no comments yet I can only tell (fool) myself that you are reading in silence.  Today I just want to start to explore the question:  Are the mainstream ideas underpinning mental illness diagnosis as sound as we presume?

This week was a very interesting one for me, there seems to have been something in the air (certainly not summer), I have been involved in many stimulating conversations with colleagues from across Powys discussing the validity of mental illness diagnosis. 

Well Jackie got us going! In her last blog, she mentioned an interview with Dr Lucy Johnstone on the Today Programme in which she discussed new research suggesting that there is no scientific evidence that psychiatric diagnoses are valid.  

Eleanor Longden talked at a conference we organised in Powys (more information here) last year and one underpinning idea that I took away was that we need for more debate on the validity of mental illness diagnosis. 

The American Psychiatric Association's publication of Diagnostic and Statistical Manual of Mental Disorders 5 (DSM5) has sparked controversy. It has led to the creation of the International DSM5 Response Committee and their world-wide online petition arguing that DSM5 should not be adopted and used. 

So what would all this mean? What if the mainstream ideas underpinning mental illness diagnosis are just not correct? Within our lifetime will we see a paradigm shift in the conventional wisdom surrounding mental distress? 

What would this shift look like? Would it start with us changing the question that underpins the mainstream mental health services from "what is wrong with you" to "what has happened to you"?

What would that mean to those of us that perhaps take benefit from finally being given a reason, a medical diagnosis, from the experts for why things have been so difficult?  How would people access services, support, welfare benefits if there were no diagnosis for mental distress?  In schools how would children access the extra support they need, again if there were no mental illness diagnosis? Would this change the justification supporting the Mental Health Act and some of the ideas underpinning it around personal responsibility? 

Just some of the many questions that spring to mind!  I’d love to hear what you think and whether this is a debate that you are having with people close to you? 

I'll sign off now with a hope for some sun this weekend and with a quote that feels very relevant to this debate: 
 "There are only two mistakes one can make along the road to truth; not going all the way, and not starting" Buddha

Mental Health Awareness Week

How was it for you?

For me, it was great hearing mental health being so prominent in the mainstream media - if only we could make every week Mental Health Awareness Week!

Naturally I "got physical" but we won't go there in this post... Instead, here are some of my highlights from the past week:

1. John Humphrys on the Radio 4 Today programme, on Monday 13 May (listen here) 
The day before he won a Sony Radio Award, and the programme won Best Breakfast programme award (yes, you can just tell I wake up to this every day...) Anyway, he was speaking to Dr Lucy Johnstone, a consultant clinical psychologist. She referred to new research which says that there is no scientific evidence that psychiatric diagnoses such as schizophrenia and bipolar are useful... John tried describing schizophrenia as a disease, then a disorder... and then when Lucy challenged both I could just picture him throwing his hands in the air as he exclaimed -  well then he was struggling to find the vocabulary! Lucy said: "instead of asking what is wrong with you we should ask what has happened to you." Brilliant stuff!

2. Start the Week followed hot on John's heels with Music & the Mind, Monday 13 May
An excellent opportunity to hear two of the country's leading experts of the mind head to head. Richard Bentall is Professor of Clinical Psychology at the University of Liverpool, whilst Tom Burns is the Professor of Social Psychiatry at the University of Oxford. Tom is just about to publish Our Necessary Shadow, a defence of psychiatry, and according to the programme a direct response to Richard's Doctoring the Mind: why psychiatric treatments fail. One of the most shocking statistics Richard quoted was that 1 in 7 people in Scotland are taking anti-depressants according to a recent study... "well, it gets people out of the GP surgery in 6 minutes..." Listen to the programme and see what you think.

3. Do famous role models help or hinder? Tuesday 14 May
Mark Brown, who edits One in Four magazine (a quarterly magazine written by people with "mental health difficulties,") wrote an intriguing piece on the BBC website about this. Do stories of Winston Churchill and his famous black dog, or more recently, Stephen Fry's bipolar tales, inspire or deflate people experiencing their own mental distress? Check out the comments section for some really interesting observations.

4. The Big Mental Health debate, Thursday 16 May
MPs debated mental health for 4 whole hours in the House of Commons on Thursday. I watched a large chunk of it live online, and for those with stamina you can read through the debate word-for-word on Hansard here. Paul Burstow MP introduced the debate, saying "there can be no health without mental health", and there followed a very wide-ranging and in-depth debate. Issues covered included the value of lived experience, war veterans and Post Traumatic Stress Disorder, dementia, the mental health of prisoners, and a detailed look at eating disorders. Some of the key themes which emerged were:

• The need for crisis care for those experiencing mental distress to be on a par with services provided for those with physical needs.
• The recognition that the voluntary sector has a huge role to play, and that the innovative and supportive approach of many groups is extremely successful. However, there is a cost involved - "we should not see community care as the cheap option."

The Minister of State for Care & Support, Norman Lamb, rounded off the debate by announcing the setting up of a working group to look at how to improve access and equality to mental health services. But perhaps the most valuable thing achieved on the day was that MPs debated mental health for the second time in a year. Charles Walker, one of the MPs who spoke of his own personal experience of mental distress at the June 2012 debate, said today: "In a sense, the lid has been lifted. People now feel much more confident speaking not only of their own mental health experiences, but of mental health in general, and the hopes, aspirations, fears and expectations of their constituents."

Music: passion and therapy

AJ, who has volunteered at the mental health charity Ponthafren Association in North Powys for many years, talks to us at Powys Mental Health about the regular weekly music therapy session he set up in 2005.

When does the music therapy take place at Ponthafren in Newtown?

On Thursday nights, between 5 – 6.30pm, the sounds of the music therapy group at Ponthafren emerge. Up to 6 – 8 members attend weekly, from a guitar player – myself – who writes and composes songs and runs the group, to a member who plays bass guitar and several other instruments such as keyboards. One musician makes his own instruments. He made a three stringed guitar out of a cigar box. It’s electric and he plays lead guitar on it. He also plays a banjo and a mandolin. We play electric for three weeks, and acoustic for the next three, and alternate the two.
Anyone who is interested can turn up on the day – it is not regimented, they can turn up and leave when they want.

Why did you set up the music therapy session originally?

Because I was a musician and I thought it would be a good idea to pass on some of my talents to other people. I don’t teach guitar in music therapy, but if anyone wanted it taught I would outside the session. It also helps my mental health. I suffer from depression, anxiety and stress and for 1.5 hours of my life I’m doing something I enjoy and my brain works in a different way. I can ask someone for three music chords and I can put that into a song and compose words out of my head. I can ask for a subject, someone can give me a subject, and I can sing a song about it off cuff. People will stand in amazement because this song has just come out of my head. I am asked how I do it but I have no idea. That takes me away from everyday stresses and strains, which is why I volunteer.

What actually happens during the session?

We start at 5pm. For part of it, this is where the other people come into it, I will play a song first and I will shout the chords out and the others will play along with me although they don’t know what I will play. They follow me – look at my fingers and follow the chords and get the song.

For the second part – I have “copy songs” that people know and they will follow me as I sing them and also play them on their instruments. Mainly - it’s fun. If somebody comes and plays completely out of tune – so what. They will get it in the end, they are there and they will enjoy themselves.

What is the reaction of those who attend the music therapy?

I am told by people that music makes you feel better than loads of pills.

I have actually taught someone from scratch – he’s been learning guitar for a year, he now comes to the music therapy groups and joins in and he also sings his own songs which he has created himself. It has opened a fantastic door for him because his family are musicians and he was always left on the sidelines. Now they have invited him in. He also suffers from mental helath problems and it has helped him tremendously.

People say after the 1.5 hours – "thank you!" I get texts from people who have just been, saying – "I feel great, I really enjoyed that." What more do you need?

Thank you, AJ, for talking to us! And if you want to tell us about your experiences of music, and how it has impacted on your mental health, please either add a comment or get in touch - we'd love to hear from you.

You can find out more about Ponthafren Association here.

Walking to wellbeing

Last week I sponsored my sister to walk 7 miles for the British Heart Foundation with three work colleagues and a dog. Between them they raised over £300 for the charity. But as an added bonus, they probably raised their mood too. It is a well-known fact that walking is seriously good for your mental health.

By coincidence, there are two back-to-back Awareness Weeks this month trying to get us walking (and exercising generally) more regularly as a way of improving our mental (and physical) health. We're already four days into the first - which is Get Walking Week, 4 - 11 May. A Ramblers' survey found that "a quarter of adults walk for no more than one hour each week." Yet, according to Dr Stuart Biddle, professor of physical activity and health at Loughborough University, there is "long-standing evidence to support a link between walking and mental health benefits.... Walking can elevate a person's mood, lessen feelings of depression and allow a person to think more clearly."

So, what did you do for the bank holiday if you didn’t have to work? Did you walk anywhere? Did it make you feel better? And if so do you plan to continue walking regularly for health, pleasure or both?

Next week is Mental Health Awareness Week 13 - 19 May (OK, you have a day off to rest on 12 May!) Promoted annually by the Mental Health Foundation, this year the theme just happens to be "physical exercise and activity, highlighting the impact they have on mental health and wellbeing."

Brecon and District Contact Association has organised an event on Wed 15 May at The George Hotel in Brecon to coincide with the week. "Walking in circles without going giddy, has the psychiatrist gone mad?" is a talk by Kate Dufton on labyrinth walking.

Ponthafren Association has organised various events throughout the week, including outside games, spinning and Zumba. You can link to a poster here.

For those who find their walking turning into more of a jog (and day-dreaming of crossing the marathon finish line somewhere soon) read Clare Allen on the mental health benefits of running.

But if you’re just starting out and fancy some company on your walks, try these Trail Tempters - free guided walks in various parts of Powys, anything from 1.25 - 7 miles - and chance to chat to other walkers too.

The sun is out, the skies are blue and the hills are green and beckoning... now I just need to persuade Laura that I should be out there doing real research about the benefits of walking to my mental health...