Sharing power - in the planning and reviewing of services

Just before Christmas 2019 I attended this training event in Llandrindod run by my two Participation Officer colleagues – Owen Griffkin (Mental Health - above) and Andrew Davies (Health & Wellbeing - below).

The aim of the day was to build the confidence, knowledge and skills of participants, some of whom were already volunteering as citizen or individual reps, so that they could effectively participate in the planning and reviewing of services with public bodies. Citizen reps volunteer their time, energy and passion to make a difference for others and to the services we receive, and are helping influence change at local, regional and national levels.

Some of the participants are citizen reps on the Powys Mental Health Planning & Development Board, whilst others regularly sit on the Powys Regional Partnership Board.

Setting ground rules for the day

The key learning of the day was around: 

• Communicating confidently and effectively in meetings.
• Knowing where to access relevant information.
• Better understanding the process and procedures involved.
• Better understanding the public bodies involved.

As people introduced themselves at the start of the day it was really interesting to hear the views of those in contact with services, and others who had been citizen reps for some time already:

“Although organisations are individually very good, together they shall never meet.”

“I like to become a thorn in people’s sides. I enjoy arguing the point although I can accept both ways. A 360 degree view of services is so much better.”

It’s not possible to cover the full extent of the training in a short blog post, so I shall just highlight some of the particularly interesting discussions which took place on the day.

Representing other people

As a citizen rep you are an equal partner with other professionals in the room - you are an expert by experience. But how do you gain the experience of other people and take their stories to a partnership board?

One of the reps spoke about how he represents his own experience as a carer, but also takes stories with him from local carers’ groups that he attends. “You need to be mindful for it not to be just about yourself but to cast the net and make the representation whole. You are in effect a Citizen Rep (representing a group of people with a common interest) but also a Representative Citizen (giving your own opinions)." 

Another participant said: “It’s really hard to put yourself to one side. Sometimes you might be putting a viewpoint forward that you don’t believe in. It’s about delivering it in way that doesn’t put people off, or bore people, or become too personal.” There are some very polarizing issues about the medicalisation of mental health, for example, but it is important for a rep to balance any views s/he may have and give the other side as well.

Understanding other people’s context

Another experienced citizen rep pointed out that certain things cannot change. 

“There is no point banging your head against a brick wall that can only be changed from the top down.”

When things don’t go well – and when they do

Sometimes it can be easy to ask – “why are we here if we don’t have any influence?” It was felt that some meetings were a waste of time, and only “tick box” exercises. “Sometimes the public body will just move on to the next item on the agenda as if we have not spoken. We have been invited to speak, but it sometimes feels just so that they can tick that box.”

Someone representing a local charity described how it took her three years to be heard within one public body. But eventually her persistence paid off, and the organisation was finally able to achieve some funding for a much needed project.

It was, though, also agreed that sometimes staff within an organisation may also be struggling with the slow rate of change – but sometimes the decision making process, and the accountability attached to it, require that change to go through and be agreed by many different committees.

New reps often have very high expectations in the early days, but these need to be managed from the start.

“Don’t promise the earth. It’s the small steps that are important. And publicising the success stories.”

You said, we did

Everyone agreed on the value of prompt feedback from the boards about progress. “Even if that is – we’re still driving this forward but we haven’t got anywhere yet.” Otherwise there is an understandable tendency for people to think – “what’s the point?”

The mock meeting

In the afternoon we were pleased to welcome our former colleague Freda Lacey, now Partnership Manager Mental Health at Powys Teaching Health Board, to chair a mock meeting designed to put into practice all the learning from earlier in the day. It turned out to be an extremely interesting and valuable exercise.

All those attending agreed that they had benefitted hugely from the day, both from the learning and the opportunity also to network with others who had a similar role.

And finally…

Would you be interested in joining these citizen reps to take grass-root views and opinions to local board meetings where service providers can find out what is working and what needs to change? For further information about becoming a citizen rep, in the field of mental health or health and social care, just get in touch with us by emailing mentalhealth@pavo.org.uk or ringing 01597 822191.

Alcohol dependency and families

Blue - from the Kaleidoscope Project exhibition - information below

by our guest author from North Powys

It was recently Alcohol Awareness Week and there were lots of stories and comments online about the effect alcohol dependency can have on society. This got me thinking about my own experience and I wanted to write down my thoughts and share my story to help people understand what is like for the families affected by alcohol dependency.

So, let’s start by looking at what exactly alcohol dependency is.

"Alcohol dependence, sometimes known as ‘alcoholism’, is the most serious form of drinking problem and describes a strong, often uncontrollable, desire to drink.

Drinking plays an important part in the day to day life of alcohol dependent people, which could lead to building up a physical tolerance or experiencing withdrawal symptoms if they stop."

The reason I use the above quote is because all too often nowadays people believe that alcohol dependency is a choice. No. No. No!  Alcohol withdrawal is one of the most dangerous and painful of all the addictive substance withdrawals with some awful symptoms such as hand tremors, sweating, nausea, hallucinations and seizures.

The incident that finally led to my mother’s recovery started with a seizure. She was trying to do the right thing but ended up having seizures. I didn’t live at home at this point, and I got a call from my mother’s boyfriend nonchalantly informing me she was having a seizure. I screamed down the phone whilst running home. I called an ambulance and she went into hospital. It was horrifying but she was released and went into rehab. I found out later that she had been given three months to live.

Does that sound like she had a choice?

Then you hear the other argument people often come out with.

"But when someone starts drinking then surely that’s their choice?"

What they don’t know is what happened to start that person drinking. I suffered from anorexia and self-harm. When I was severely ill would you blame me? After all it was my choice to stop eating. Or when I turned up at the A+E department needing to get stitched up, embarrassed and ashamed after self-harming, am I a waste to society because I did it to myself? Unless you have no compassion or empathy the answer is no. 

I struggled with these issues because I was abused. I believe that my mum’s guilt for not realising what was happening to me was one of the reasons she began drinking unhealthily. I was very ill with my own mental health when my mum found out she was pregnant again. My brother had his own issues which didn’t help and she had a new-born to look after. She was struggling. Who wouldn’t be? Everyday stresses, job worries, financial issues, a mentally-ill child who was stockpiling pills and running away. It was no surprise when she was diagnosed with post-natal depression and sent away with a supply of pills and an appointment with a doctor in a few weeks. A can of lager in the evening was the norm.

It’s so gradual. It’s hard to pinpoint when it became a noticeable problem. That can of lager in the evening becomes a few more, a bottle of wine a day which becomes a bottle of vodka. She was very good at hiding it. She drank to hide her anxiety. Every time she left the house she had a panic attack so she found a coping mechanism to continue to function. And it worked. For a while. We had no idea, we knew about the anxiety but she was ‘out and about’ so that was ok. However, we started to notice she was drunk more and more often and empty bottles were turning up around the house. That’s when it came to a head and we all knew she needed help.

People can forget about those who are around an alcohol dependent person because of the stigma involved. It becomes a family secret and if you do try to reach out people don’t know what to say. It can be incredibly isolating. I would dread coming home as I didn’t know what I would find there. Mum usually passed out, us having to make tea and look after my sister. If she was awake there might be a huge row between my mum and her boyfriend whilst I had to try and keep peace for the sake of the children. I felt responsible and that I had to keep it all together. I was taking time off college to help look after my baby brother whilst my mum was drinking. I would attend the parent evenings, and I was always the one who people offloaded their problems on. My mum, her boyfriend, my brother. I was there for them to vent at, but there was no-one for me to turn to. 

It was soul destroying at this time seeing my mum going to the doctors, begging for help. She was referred to the local Community Mental Health Team but was discharged after two weeks because she ‘didn’t want to help herself.’ I was missing college, and I was continually stressed and glued to my phone. I went to a GP. This was the same GP that had prescribed Diazepam for my mum for her anxiety which she was now dangerously mixing with the alcohol. I told him what was happening, and how stressed I was, and I hoped he could do something for my mum. He called the child protection services, which unsurprisingly left me unpopular with my family after that, adding to my poor mental health.

I used Google to find out about a national organisation called National Association for Children of Alcoholics (NACOA). I sent them a lot of emails and received good advice and support back from them. I saved the emails, and re-read them when I was struggling. Those emails got me through some dark times and difficult choices.

I am very lucky that my mum was finally able to get the support she needed. She made a full recovery with very little damage to her body. I am so proud of her as it is a huge achievement. Not everyone is so lucky. Some people cannot access treatment because they don’t have a permanent address, or the health professionals they are in contact with don’t understand their illness. They might not have the support or strength to recover.

A big issue is with dual diagnosis. If somebody is diagnosed with depression and alcohol dependency you need an assessment to access the service. To have the assessment you need to be sober. Do you see the issue here? It’s a vicious circle where the cause of the problem can’t be treated until the problem has been treated. But the alcohol dependency can’t be ‘cured’ until the depression is. One feeds the other and we need to understand this more as a society.

The idea that ‘they did this to themselves’ is so instilled in society that when someone tries to recover they are turned away. We need to fight the stigma and celebrate and nurture recovery.

Photographs

The photographs in this blog post feature artwork from a Project Kaleidoscope exhibition held in May 2019 in Newtown in Powys. Kaleidoscope is a charity which seeks to tackle the stigma that people with drug, alcohol and mental health issues face.

The exhibition was inspired by using forms of art in individual care plans to address drug and / or alcohol use. Service users and volunteers worked together to develop the display at the Oriel Davies Gallery, which showcased the creativity of individuals who had accessed support for substance misuse at some point in their lives. What their work has in common is how creative activities have played a significant role in exploring emotions, reducing anxiety, improving a sense of self-worth and helping to resolve other psychological conflicts.

Sources of support

Kaleidoscope Project - 01686 207111

Alcoholics Anonymous - there are regular meetings in Brecon, Newtown & Welshpool

National Association for Children of Alcoholics - 0800 358 3456

Drinkaware - 0300 123 1110

Compassionate Mental Health conference, Hereford, November 2019

by Sue Newham

Health & Wellbeing Engagement Officer, PAVO

I went along to this conference with only a vague idea of the content, but being told by my colleagues at Powys Association of Voluntary Organisations that it would introduce me to some new ideas and give me plenty to think about. They were right!

I was asked on arrival if I’d come to do the yoga. I hadn’t, but it was certainly a novel start to the day!

Novelty continued with an opportunity to engage in “Compassion Circles”. Andy Bradley encouraged us to get into threes and listen to each other “with a quiet mind and an awake heart.” Andy’s concern is that our systems, with time pressures and outcomes, can make people feel as if they don’t really matter. Really listening to people can change their feeling of being valued for who they are.

The keynote speaker was Robert Whitaker, author of books about mental health treatment called “The anatomy of an epidemic” and “Mad in America.”

Robert outlined the history of dealing with mental health issues in the USA. He explained that, in the 18th century, the prevailing view and practice was to treat people experiencing mental breakdown as having lost their humanity. Sufferers were treated like animals and subjected to barbaric treatments. At the end of the 18th century, the Quakers set up homes where sufferers were seen as “children of God” and treated with compassion in pleasant surroundings. Records of the day suggest that there was a good rate of recovery following this treatment. In the 1980s, the American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders 3 became the standard handbook of psychiatric diagnosis. It heralded a shift towards the disease model of mental health. Whitaker sees this as creating a line between “normal” people and “abnormal” people, where stresses associated with life become illnesses to be treated.

I found myself pondering the role of the American Psychiatric Association and the drugs companies. Is it likely that companies that have seen a 50 fold increase in income from mental health drugs would be open to other ways of treating people without drugs? If drug companies fund the American Psychiatric Association, which apparently they do, is it possible for that organisation to embrace different treatment models?

Early disease models of mental illness seemed to be based on the theory that chemical imbalances within the brain lead to symptoms of illness that can be corrected by medication. Although the theory had been found as inadequate as early as the mid 1980s, it has still continued as an urban myth. This was a shock to me, as before this conference, I too would have said that mental illness was to do with chemical imbalances in the brain.

Robert Whitaker challenged the prevailing disease model as an effective means of treating mental distress. He said that, if the model was correct, overall recovery rates should now be going up as medication successfully treats people’s illnesses. On the contrary, statistics record that 1.1 million people were on long term disability in the USA due to mental illness in 1987. That number is currently around 5 million. There is also evidence that full recovery is more likely amongst unmedicated groups than medicated groups.

Whitaker’s overall message is that the medication model has not achieved the outcomes expected and has failed to produce scientific evidence that it is improving the mental health of the American public. He mentioned several projects that had shown success in non-medical treatment of mental distress: the Soteria project; the Norway Medication Free Inititative; the Open Dialogue's model developed in Finland.

He suggested that we need to change the script, seeing struggles as a part of being human, rather than a sign of illness which may see sufferers relying on medication for the rest of their lives. He advocated social support, listening and giving people a sense of hope. Psychological therapies also have a role to play in helping people work through traumas and distress. 

During another session, I heard from Margaret Jordan about the benefits and practice of Sensorimotor Psychotherapy, which treats people holistically rather than focusing on the brain. A phrase which Margaret used seems to me to be important and worthy of more thought. She said, “Trauma is an action that needs to be completed in order for the symptoms to reduce.”

I observed an Open Dialogue session in which a course participant agreed to talk about a personal experience and we observed how Open Dialogue can help people to work through difficulties they were facing. The practitioners were Yasmin Ishaq and Rai Waddingham. This was an extremely interesting, but in many ways simple intervention, involving taking time with people and those close to them and listening to them. Yasmin is a social worker and psychotherapist and Open Dialogue lead for NHS Kent. This seems like a very positive way that people can be given time, listened to and enabled to process and work through their difficulties.

I enjoyed listening to Ruth Young from Jamie’s Farm talking about residential weeks for troubled young people, which involve real farm work and responsibilities, as well as group times for talking. This is how the website describes the programme, “Jamie’s Farm acts as a catalyst for change, enabling disadvantaged young people to thrive academically, socially and emotionally. We do this through a unique residential experience and rigorous follow-up programme, combining farming, family and therapy.”

So what was my overall impression of the day? As someone with only one year’s experience in the mental health field (in other words, a complete novice) I found it thought provoking! It challenged some views that I had held as facts, without really knowing why.

It shocked me to hear that people with severe mental illness have a reduced life expectancy, often dying between 10 and 25 years before their peers. The World Health Organisation suggests that some physical illness may be exacerbated by antipsychotic and related drugs.

Overall, it left me with a feeling that profits and big business set the agenda for many of the ways we tackle everyday life. I feel that society has a duty to question why things happen as they do and whether, in fact, science is being manipulated for the benefit of those making the most money.

I also feel that better listening and focusing on the whole person could help many people experiencing mental health issues. “Compassionate” sounds like a good word to describe how I’d like to be treated if I was going through trauma and distress.