Tuesday, 14 January 2020

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.


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
Drinkaware - 0300 123 1110

Tuesday, 7 January 2020

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.

Monday, 16 December 2019

Remembering Jill Dibling

Jill Dibling in 2017 with her artwork
Derek Turner writes:

It was with a deep sense of sadness that I learnt recently that Jill had been diagnosed with terminal cancer. Three days ago, I learnt that she had passed away. My sense of sadness deepened with the fact that I would be unable to celebrate Jill’s life at The Pales Meeting House in Llandegley on Saturday 14th December 2019. It was typical of Jill that she did not want visitors, she would manage her illness, and her final days, in her own way with the support of ‘her girls’.

Jill was a pioneer in modern thinking about mental health. She not only had her own lived experience but she had ‘lived expertise’ as well. By lived expertise I mean that she learnt valuable skills from her own overcoming of the challenges she faced. It was her ability to use this expertise to the benefit of other people that makes her stand out. 

Jill helped in the founding of Mid Powys Mind and later became Chair. She was equally involved in Powys Mental Health Alliance. It was in this later participation that I had most to do with Jill. The Alliance was run entirely by people with lived experience but it was Jill who was behind the radical approach to service provision that drew on her own expertise. Jill had a quiet tenacity that more often than not won the day when others might be sceptical about what could be achieved by people who were so often dismissed as mere ‘service users’.

Jill (right) with Pat Atkinson of Powys Mental Health Alliance in 2009
It would however be wrong to remember Jill just in terms of mental health services. She was a committed artist whose work has been described as experimental. She passionately believed in the benefits for some people in the creative value of art in mental health and wellbeing. Jill would sing with the Peace Choir at the Pales Meeting House, but, if asked, Jill would probably see her role as a mother to her girls as her most important contribution.

There was a positive energy from Jill that gave us all hope. She will be missed in by all those who knew her, and her contribution to mental health services in Llandrindod, Powys and Wales, should not be forgotten.

Jill (far right) at the launch of the Powys "Yellow Book" of mental health information in 2000

Freda Lacey writes:

Jill was always someone who was open to developing and growing her knowledge. She was very involved in the lottery-funded DIY Futures project and was a firm proponent of the abilities of people to be very much co-creators of their own mental health care and treating people as experts in their own care.

I knew Jill in the capacity of my working with her in Participation, her patience and care of working with others and her openness to listening to other people’s views and her encouragement of people speaking up and asking for what they wanted. She was always supportive of me and I felt her deep care… She’d always have time for a coffee and would, in my early days, offer me guidance or knowledge of a situation or history/story that was invariably really important and valuable to know.

Jill with colleagues from Powys Mental Health Alliance in 2010
Jill undertook some Open University courses that I supported her on and certainly our discussions about her essays and her dedicated focus on learning inspired me, she was always wanting to improve her knowledge and continue to grow and learn.

Jill was a skilled professional volunteer contributing outstanding knowledge and guidance to mental health services in Powys, particularly her support of individuals coming together as peers. She was recently awarded a life achievement award by Mid Powys Mind which was very well deserved. 

I will miss her, her quiet support and the way she would invite sharing. I will miss her steadfastness and extraordinary lived experience, her gentleness and yet her solid convictions on what was right and what was needed. Her loss in respect of mental health services in Mid Powys will be keenly felt.

Letting go – a poem by Jill Dibling 
Jill at the grand opening of the Wellness & Recovery Learning
Centre on Felindre Ward, Bronllys Hospital, in 2014.

The creeper went west
With the wind from virginia.
The tall trees went south
With the wind from the north.
The gardens went wild as
The weeds became stronger -
They thrived and they seeded
And then they took hold
Of the lawns and the beds
Where the roses were growing.

Then all became clear as
Their strength was revealed.
The moss covered stones and
The fungi grew bold
On the wood of the roof and
The door and the sills.
The pools formed and swirled and
Spawned life of their own.

Then at last we let go of
The home that had bound us.
The breath of the earth and
The light could surround us
And free us to enter
That world that had found us.

Derek Turner worked for many years as a Mental Health Development Worker at Powys Association of Voluntary Organisations.

Freda Lacey is the Mental Health Partnership Manager, Powys Teaching Health Board, and previously the Senior Officer Health & Wellbeing at PAVO.

Thursday, 12 December 2019

Christmas is upon us! Let's spread the love

by Jackie Newey & Jen Hawkins

There are lots of reasons why someone might be faced with the prospect of spending Christmas Day on their own. Some people may choose this option - which is absolutely fine. Others may have lost a loved one - a husband, wife or long-term partner, or parent, during the course of the year, and be dreading their first ever Christmas alone. Other people of any age may work a long way away from close family and friends and not be in a position to travel and spend time with them.

Sadly, however, it is much more likely that it will be older people who face Christmas alone. Some older people may not see anyone, or even have a phone call on Christmas Day, never mind receive a gift or join in a shared meal. A new Age UK report published on 3 December 2019 estimates that more than 200,000 older people in the UK will spend Christmas alone this year. Those who have recently been widowed struggle the most. The poignancy of this situation is brilliantly illustrated in a short video called "Stella" from Reengage UK (formerly Contact the Elderly).

Joanna Lumley, Age UK Ambassador, says: "Loneliness is one of the most disabling and dispiriting situations that thousands must face this and every year. Even pulling a Christmas cracker needs someone at the other end...and think of all the other moments when a kind hand, a warm voice, and understanding presence would be of even greater benefit to a lonely troubled person.”

Prompted by attending the Powys Bereavement Project launch earlier this month (planned to coincide with the first ever National Grief Awareness Week), Jen decided to try and find out if there were any events or lunches organised by groups in Powys for people to attend if they were by themselves on Christmas Day. Early on in her investigations she was pleasantly surprised by the number and spread of activities across the county. Some of the organisations are even offering to organise transport where needed.

Before long we were both absolutely overwhelmed by the sheer generosity of individuals linked to voluntary groups, churches and even private organisations, who are working tirelessly to ensure people in their communities do not have to face Christmas alone. Indeed most of the lunches / events are free to attend and run on donations and good old community Christmas spirit!

One church in Newtown provides meals for up to one hundred people each year who are elderly or vulnerable and on their own at Christmas. Working with a local sandwich shop, who donate their time and the main course of the meal, a delicious Christmas dinner is prepared, taking into consideration different dietary and lifestyle requirements. Volunteers at the church gather on Christmas morning to organise the food parcels to be delivered to the local residents. 

As well as a Christmas dinner each person receives a newspaper, a dessert and a small gift. It’s not just a flying visit just to drop off either. There is a true sense of Christmas spirit with volunteers staying to chat and keep people company for up to half an hour. Many volunteers have been delivering parcels for several years, visiting the same people each year to build relationships, foster friendships and maintain a sense of continuity and connection. Places have been filled for this year but if you know of someone who would benefit next year please get in touch and we can refer you to the relevant organisations.

Powys really wears its heart on its sleeve when it comes to caring for people in the community at Christmas. What was heartwarming and poignant to discover is that support at Christmas isn’t just localised in one area of Powys. Support and care is provided right across the county from a Christmas meal in Llanfyllin organised by local people and business, to hot drinks and mince pies at the village hall in Presteigne, to board games, bacon butties and hot chocolate at the Greek Restaurant in Brecon with Credu - Connecting Carers. The range of support and provision is varied and heartfelt. 

Other Christmas Day lunches and events are listed on our website events calendar. Some are now fully booked, but others still offer places, or are more informal spaces, where people can meet up with others on Christmas Day. Enjoy a chat, a drink (non-alcoholic or not), listen to music, laugh together (or not!) at some of those dreadful Christmas cracker jokes, and eat a Christmas dinner (roast turkey, or not!) together.

In the end Christmas Day is just one day of the year. What about the other 364 (or in 2020, which is a Leap Year, 365) days? Powys Befrienders is a PAVO project helping to improve the independence of people aged 50 and over in the county by encouraging thriving social networks. This can have huge knock on benefits, not only in people feeling happier in themselves and enjoying life more, but in their ability to remain in their own homes for longer.

Isolation and loneliness can be big issues, especially in a large rural county like Powys. But there is support out there, whether at Christmas or any other time of the year. And the main message we took away from this small piece of work is that generally people in Powys don’t need to spend Christmas Day alone if they don’t want to!

With seasons greetings to all our readers, and hoping that your Christmas is as busy or as quiet as you would really wish.

If you need support over the Christmas period, however, for whatever reason, then take a look at our website page with details of organisations that can help.

There is also an excellent blog post, with tips on how to survive Christmas, on local mental health charity Ponthafren Association’s website - Beat the Christmas Blues.

Tuesday, 10 December 2019

Eating disorders' services review in Wales

by guest author Helen Missen

Powys resident Helen Missen, a passionate advocate and voice in Wales for change in mental health services, particularly those provided to people experiencing eating disorders, has been closely involved on the panel for the recent Welsh Government Eating Disorders’ Review. She tells us more about it. 

Eating disorders continue to have the highest mortality rate of any psychiatric diagnosis, across the world. They are often thought of as difficult to treat, though with early intervention, evidence shows a good chance of recovery. 

In Wales, and especially Powys, early intervention with specialist provision is still underwhelming. After my daughter became ill with Anorexia nervosa in 2009, I realised there was an urgent need for change. As well as a petition to the Welsh Government, I started to learn as much as I could about eating disorders and services, in Powys, Wales, the UK, and internationally.

When you, or a loved one, has something as complex as an eating disorder, the frustration of constantly going to somewhere like Child & Adolescent Mental Health Services (CAMHS), or adult services, where a couple of days of training does not make the staff experts, is demoralising.

It’s a bit like taking someone with a heart attack constantly to the GP and them saying – "I’ve read that in the book, I know this is what you’re supposed to do, but I don’t have any of the skills to do it."

Generally, a referral to the specialist is the norm in physical health. In mental health, a couple of training sessions deems a clinical provider a specialist. That, for parents and carers, and those with a diagnosis, is very frustrating. As well as dangerous.

The 2009 Framework for Eating Disorders was established by the Welsh Government on behalf of services. It was deemed at that time, that there was too little specialist input for eating disorders in adult services. CAMHS were, and are still thought to have enough generic help, something that does need to be changed.

Mental health eating disorder services are tiered from Level 1 - GP / school nurse / health visitor, to Level 4 - inpatient services. As a result of the framework four specialist adult eating disorder teams were set up at tier 3 level across Wales – one in the North and three in South Wales. Powys is covered by both the North and South teams at the moment. £1 million pounds recurring was given to those four teams, which obviously isn’t a great amount.

The four teams are run by psychologists and specialist trained nurses, with a couple of psychiatrists overseeing CAMHS but not necessarily in adult services. Clearly still underfunded, and with too few specialist staff at tiers 1 & 2, the strain on staff and patients continues.

My involvement for change began when I submitted a petition in 2010. The petition called for equal funding for CAMHS provision as there was for adult services.

It is well known that eating disorders generally start in the teenage years, around puberty. Although increasingly they are being diagnosed earlier and occasionally they may not present until later in life.

That petition is still running.

Unfortunately, services in Powys are very similar to how they were 10 years ago when the petition was first submitted, which is very frustrating for me. I have worked very closely with the eating disorder groups across Wales, and sit on Boards nationally and internationally. It grieves me that Powys hasn’t moved on in that time.

However, things are changing! 

In 2016 Public Health Wales was commissioned to do a refresh of the 2009 framework. Out of that came the recommendation that there should be a review of the Eating Disorder Framework.

“There now needs to be another major reconfiguration to move to align the service with the new emphasis on working seamlessly across agencies across Wales in the interests of promoting wellbeing and emphasising timely and effective early intervention. This is also to align with recommendations and directives in the NICE (National Institute for Health & Care) guidelines for eating disorders (2017), the Wellbeing of Future Generations (Wales) Act 2015 as well as multiple documents emanating from the Welsh Government in related arenas." 

The refresh came from Vaughan Gething, Minister for Health & Social Services, who commissioned Professor Jacinta Tan to do the review on behalf of the government. Professor Tan is a child and adolescent psychiatrist as well as an academic. She has a great heart for the children and families who suffer with eating disorder.

I was invited to be on the core team selected by Professor Tan, to help her gather information from the public. 

Unusually, for this type of large piece of government work, Professor Tan decided that to hear from the public first would provide the most important underpinning for the review. By holding four public workshops across Wales, one at each 'corner' of Wales, with a team of lay people who were representative of service users and carers facilitating the days, she was breaking new ground in the pure sense of providing the voice of the people.

The question Jacinta posed each day was: "what would be your ideal service?" which for any carer or person with an illness to be asked was quite monumental; a game changer in a way. Following the question, Professor Tan stood back and the day was run by the core team, with no input from clinicians. Never were the groups led in what to say... it was complete freedom. There were horror stories, and good stories.

Those workshops attracted carers, patients, people with lived experience, and a men’s group to hear partners’/ husbands’ / brothers’ perspectives. It was fascinating to listen to and be involved in.

At last people were given a voice.

By the end, all four workshops illicited very much the same pattern of what they wanted. The themes that ran throughout were: there are things that are really working well and amazing people doing the work, however, there are not enough specialists and very little specialist early intervention.

The underlying principles which people wanted:

  1. Early detection and intervention. Helping people, like teachers and parents, to identify people who might have an eating disorder to have access to support and help.
  2. Inclusivity. Never turn people away. Anyone in distress who thinks they are, or a loved one who might have an eating disorder, deserves a response.
  3. To be person-centred. To have prompt expert help for those who might have eating disorders. Giving people what they need and trying as far as possible to deliver it to them where they are. To provide person-centred and holistic care for the person and the whole family.
  4. Relationship based.
  5. Recovery focussed.
  6. Trauma informed.
There were 22 recommendations made by Jacinta which the government has taken on board. The entire 300 page paper has been sanctioned.

What does this mean for Powys?

The Health Secretary then wrote a letter to all the health boards in Wales, of which Powys Teaching Health Board is one, citing four recommendations to be upheld. Each health board had to give their strategies on how they will enforce the changes he requires:

  1. Consider the review, provide feedback and identify where key incremental changes could be made to ensure that longer term service planning can align with the ambition of the review.
  2. Work towards achieving the National Institute for Health & Care (NICE) standards for eating disorders within two years.
  3. Develop plans to achieve a four week waiting time across adult and child services recommended in the review within two years.
  4. Reconfigure services towards earlier intervention.
These submissions had to be on Mr Gething's desk by 8 November 2019.

One of the recommendations from the Health Minister is that the borders between health boards are to be grey areas. As it stands, there is too much financial segregation between health boards. If one health board has a service that may or would benefit patients in another health board, it is not necessarily shared across the invisible (to the public) borders. Therefore, the current system is not not bringing the best care to all members of the public.

Betsi Cadwaladr University Health Board in North Wales, for example, has an early intervention team (SPEED) created specifically for children and adolescents. It is a multi-disciplinary team that assesses and then treats people with very early stages of an eating disorder in that area. This approach ensures substantial financial savings for a health board, and years of suffering could be avoided for the person with a potential eating disorder.

The CAMHS team in Aneurin Bevan University Health Board in south east Wales is also setting up a new SPEED team.

Under the current system in Powys, children are not referred to this vitally important specialist team early enough in the onset of the illnesses. 

I would encourage the CAMHS representatives in Powys to dial into the SPEED teams quickly. To start working without borders.

Early intervention gets people out of an illness, and into recovery, avoiding the entrenched state which can then last a lifetime. It is known that with eating disorders there is always time for recovery.

I know personally, and also from hundreds of people across the world, that to ask for and demand the specialists, to not be frightened to question the system, does bring about better treatment and best practice.

It works both ways!

Don’t be too proud to ask for help from expert sources outside Powys, be you a clinician, carer, or someone living with an eating disorder. Until my daughter got sick I had very little understanding of eating disorders. As with many diagnoses: until you’ve lived it you don’t understand how life changing it can be.

I have become an expert by experience. Though, for all of the experience I now have on both sides of the proverbial table, I do wish I had never come across eating disorders.

Would I do it all again? Without a shadow of a doubt. Changing a system takes time.

A small stone makes a large ripple. 

Further help

F.E.A.S.T is a national organisation providing help and support to parents, carers and significant others in the lives of people who have eating disorders.

BEAT is the UK’s eating disorder charity.

Anorexia and bulimia care is a national UK eating disorder charity.

Monday, 2 December 2019

Repping on the Carers’ Steering Group in Powys – as a young carer

Emily and her Mum
Emily Bleakley is a young carer and also a young carers’ rep on the new Carers’ Steering Group in Powys. The first steering group meeting was convened in November 2018 as part of the Powys Health & Care Strategy overseen by the Powys Regional Partnership Board.

A year on and it seemed like a good time to find out more about how the steering group is developing and working, so we caught up with Emily to find out more.

To start off could you give us a little background about your own caring role?

I started to call myself a young carer when I was 14 years old. Over the past two years my caring role has been quite varied. I used to be the primary carer for my mum who died last year from terminal bladder cancer. At the same time, I cared for my younger brother who has autism. However, since my mum's death, I now help my brother to process his grief whilst also helping around the house.

Who has provided support to you during your time as a carer?

At the beginning of my caring journey, I didn't really want to accept help as I thought what I was doing was normal. However, after having a conversation with some of my teachers at school, I decided to talk to an outreach worker from Credu Connecting Carers as I wanted to meet carers with similar experiences to me. Since that initial meeting two years ago, I have continued to work closely with Credu and I really value the support I receive from them.

Why did you decide to take up the opportunity as a rep on the Carers' Steering Group?

I really value advocacy opportunities to give my views on carer-related issues in Powys. When the email came through asking whether I'd like to take up the position, naturally I jumped at the opportunity to represent the voices of Powys' young carers.

What was the main reason for setting up the steering group and what are the main objectives now?

In my opinion, the reason for setting up the Carers' Steering Group was to share experience about the support available for carers in Powys and to ensure its future. Our main objective is to discuss the priorities within carers' support as well as to represent the carers of Powys in a way that allows support to target individual carers' needs. 

Emily with her brother & her Mum

How often does the group meet and who else is involved? 

The group meets three times a year at a minimum. However, there are occasions when an extraordinary meeting is necessary. This is always accommodated well to allow representatives time to look over any paperwork or prepare any presentations.

There are representatives from Credu Connecting Carers, Hafal Crossroads, Children's Services, Health Services, Education Services and Powys Association of Voluntary Organisations.

What are the key issues for carers in Powys at the moment, and for young carers in particular?

Raising awareness and respite are the most common issues that keep coming up. Raising awareness is an issue that is raised by nearly every young carer I have spoken to. This is mainly because we all want to get our voices heard and make a difference in matters that impact upon our futures.

What have been the steering group's main areas of progress so far?

I would say that the steering group's main area of progress would be our consultations with the members of the caring communities that we represent. We then go on to include their feedback in our findings on how we can aim to continue providing support for carers in an effective way, whilst also contemplating any necessary improvements and how best to implement them.

What are the main challenges for you of your role on the steering group?

I am yet to come across any challenges within my role on the steering group. This is predominately because the other members are able to clear up any of the terms I don't understand in any of the documents or presentations I come across.

Tell us about some of the most rewarding work you have done so far with the steering group

One of the most rewarding parts of our work is to raise awareness of the need for carers' voices to be heard on a wider scale. We do this by consulting with people we know as well as through events we organise and attend as part of the steering group. Knowing that support for carers in Powys will continue to grow is undoubtedly the most rewarding outcome for us all.

When you are not busy with your various caring and educational responsibilities, how do you enjoy spending your time?

I enjoy attending events to raise awareness of issues such as educational support for young and young adult carers to make sure that I get a say in my future as well as to raise issues on behalf of my peers.

I am also doing a charity skydive on the 8th February next year that I am busy fundraising for. I am doing this to raise funds for Credu Connecting Carers and Cancer Research. This is something that I have always wanted to do in memory of my mum.

Many thanks to Emily for telling us about her experiences on the Carers’ Steering Group. If you would like to find out more information about the steering group then please get in touch with Credu Connecting Carers by ringing 01597 823 800 or emailing info@credu.cymru

Tuesday, 26 November 2019

The Big Data and Mental Health Survey

by Professor Ann John and Amanda Marchant 

Professor Ann John and Amanda Marchant work at Swansea University on research projects looking at childhood and adolescent mental health, self-harm and suicide prevention. As a team they want their research to help improve mental health support for people. We find out more about their latest survey.

Here at the Adolescent Mental Health Data Platform (ADP) and Self-Harm Research UK (SHARE UK), we are running a survey to learn more about how future research can answer the questions that matter to you. This will help to shape our research and to help us push for the right changes to mental health support and care. 

Professor Ann John

Transforming young people’s mental health research

The ADP represents a ‘step change’ in youth mental health research by bringing billions of pieces of data together anonymously and securely in one place. This includes health, social, education and information from individual research studies all brought together. This is a unique resource bringing together researchers from across the world making it easier and faster to deliver results.

ADP research will be used to improve young people’s mental health care

Professor Ann John, the lead of the ADP, joined forces with other youth mental health researchers in Cardiff University (Professors Collishaw, Rice, Thapar, Moore and Murphy) to lead the ‘Big Data’ theme in the recently funded Wolfson Centre for Young People’s Mental Health (Cardiff and Swansea Universities). This is an exciting new development and this survey will help inform the ‘big data’ work - please get involved.

Your views matter

The ADP is a powerful resource for young people’s mental health research. But the data is just one part of the story. We are also bringing together the voices of young people through our Be Heard page and work with the MQ Young Peoples' Advisory Group

Young people make a big difference in helping us to push for the right kinds of changes. This can be changes to healthcare, support and service provision. Our goal is to improve and potentially save lives. Your views and opinions steer our research to make sure we are answering the right questions in the right way. 

The Big Data and Mental Health Research Survey

Data is created all the time. Every time we buy something online, post something on Instagram or visit a GP, are just a few examples. All of this data has the potential to be anonymised and brought together to be used for research. But which data should be used? What kind of research should it be used for? Who should have access to it? How much do you know about how data is anonymised and protected?

Getting answers to questions like these is the purpose of The Big Data and Mental Health Research Survey  We want to know more about your feelings on the use of your data for research. This includes feelings about healthcare information and personal information such as social media posts. We want to know more about how you feel about this data being used, who should have access to it, and how it should be looked after. 

Amanda Marchant
The survey is open to young people aged 16 - 24 and takes around 10 - 15 minutes with a combination of multiple choice and free text answers. You are free to tell us as much or as little as you like. If you don’t want to answer a question, you can just leave it blank. 

The survey will run until the 31st January 2020 and we want to hear from as many people as possible:

Find out more about this important research at Cardiff and Swansea Universities by following the project on social media: