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.

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

Celf o Gwmpas – Reaching Out, Drawing In

Maud & Pauline beneath a display of their artwork

Last week I attended the opening of this truly inspiring exhibition at Centre Celf in Llandrindod Wells. We originally wrote about one of the art organisation’s workshops for people living with dementia in Looking at me – an arts and dementia initiative - in 2017 in the early days of the project. 

This exhibition – "Reaching Out, Drawing In" - is the result of all the many workshops that have taken place over the past two years, for people living with dementia and learning disabled adults. 

Anne Evans is the chair of Celf o Gwmpas, and she told us more about the show:

In 2017 Celf o Gwmpas received funding from the Arwain LEADER programme for an ambitious project piloting new ways of delivering arts workshops to adults with a learning disability and people living with dementia and their carers.

We partnered this with funding from the Arts Council of Wales to run four residencies for artists with disabilities; two engagement residencies bringing to Powys highly regarded artists such as Helen Ivory and Ira Lightman, and a ground-breaking digital residency linking, in real time, with Canadian learning-disabled artist Scott Berry and participants with learning disabilities here.

We have run 174 workshop sessions, with an average attendance of 7 per workshop, and provided around 1218 places with this funding. It’s phenomenal really. Participants have experienced a huge range of art forms, developed skills in making and have taken up opportunities to explore aspects of their own lives through art. 

Artist Jane Mason worked with learning disabled adults in Tile Tales

The creativity really is amazing. We’ve had print making, puppet-making, film and animation, tile making, mosaics, watercolour painting, sewing and quilting, linocuts, multi-media personal mapping, poetry, instrument making and creative bird box construction. 

The Tile Tales ceramics workshops followed the story of tile making and explored ancient and modern decorative techniques to create two dimensional and relief designs out of clay.

In Dreamlands and Landscapes learning disabled adults worked with Vagabondi Puppets to explore their fears and dreams with puppeteer and sculptress Jo Munton using different techniques and materials.

Ruth Hogg, Project Coordinator, playing drums made from recycled materials

Some of the women in this wonderful project looked at what they were wearing when they were 25 years old in Fashion Memories: When we were 25. Artists Jane Titley and Annie Levy worked with people living with dementia to create quilted pieces using patterns and costumes which I remember from my childhood. The quality and creativity is excellent.

People may be living with dementia or as a learning-disabled adult, but that does not stop them from being artistic, creative and having skills that really should be shown which tells us about who they are. 

In the mosaic workshops participants worked with artist Terri Sweeney

Celf o Gwmpas is at the forefront of arts and health work in Powys, based on a 21 year history of working with socially excluded people and mentoring artists living with physical and learning disabilities, mental health difficulties and other ‘outsider’ experiences. 

We do a lot of work on very small amounts of money, and there are very few staff. This year we are starting up a membership scheme, so you can pay a small amount of money per month to support the work Celf o Gwmpas does such as offering arts activities like these.

You can continue to enjoy the exhibition until 4 April 2019 but gallery opening times are variable so please ring for details on 01597 822777 or email: centrecelf@celfogwmpas.org

What do people ask the Powys Mental Health Information Service?

Recently I was tasked with looking at our stats to identify some of the most common enquiries we receive at our Mental Health Information Service. I thought it would be interesting to share my findings with a wider audience. I’ll also provide some typical responses to the queries and who knows, there may actually be an answer to a question that a reader has wanted to ask for ages!

Enquiries come in to our service via telephone, email or in person – and from absolutely anybody with an interest in mental health in Powys. We also receive a lot of enquiries from people outside Powys surprisingly, but these usually relate to services available within Powys, and are made because Powys residents are currently living away from home, for whatever reason, but still have links with providers of the health services in Powys or family and friends here.

Sometimes we are asked a question which totally throws us – and then in our team we have to don our private eye deerstalker caps and do a little bit of investigative work. But those unusual and often intriguing topics are really probably the subject of another post!

So, without further ado, here are some of our most common enquiries:

I’m concerned about the mental health of a close family member. What should I do?

Whether a mother, sister, son or nephew – or any other relative for that matter – spotting that a close family member is struggling can be upsetting and hard. What can you do to help? The person concerned may not be ready to accept help. They may have received support in the past, recovered and now relapsed. They may already have put mechanisms in place to help themselves, or they may be really struggling and crying out for help in all kinds of ways.

One thing is sure. Families are all different and relationships within any of them can be complex. No two enquiries about families will ever be the same, but there are many common themes:

• How do we get help from statutory health services (the NHS)? The first port of call is the GP. After that – there are various options which are outlined on Getting help & support in Powys.
• Where can my relative go to meet people going through similar experiences? There are mental health orientated voluntary groups all around Powys running all kinds of activities and training sessions – find the one nearest to you. They welcome new members.
• I really want to help, but I’m exhausted myself. Family members who provide an informal caring role can find support in Powys at Credu Connecting Carers.

Where can I find counselling in Powys?

That there are long waiting lists for talking therapies in all parts of Wales is generally well known, but people still need to talk and will go to great lengths to investigate all the options. One of our guest authors wrote Finally receiving treatment – a personal view which documents one journey. We were being asked so often about alternative options that we decided to set up a webpage dedicated just to this – How to find talking therapy or counselling in Powys. Here you can find links to the charities locally offering counselling, plus an extensive list of counselling directories – everything from the Buddhists’ Therapy Database to the Hynotherapy Directory.

I think I need a mental health advocate – what do they do and how do I find one?

If an individual in contact with mental health services feels they’re receiving the wrong treatment, or wants someone to support them at a meeting or tribunal, for example, then they may be eligible for free support from an independent mental health advocate.

Advocacy is all about taking action to help people say what they want, secure their rights and obtain the services that they need. Mental health advocacy in Powys is available to:

• Those residents who are currently inpatients on a mental health hospital ward. That could be within Powys (Felindre Ward at Bronllys Hospital) or in another county (for example, North Powys residents may be at the Redwoods Centre in Shrewsbury in England). This service is provided by Conwy & Denbighshire Mental Health Advocacy Service. Don’t be put off by their service name – CADMHAS do cover Powys!
• People in contact with what are known as “secondary” mental health services, so they live in their community but receive support from, for example, a community psychiatric nurse or psychiatrist. There are advocates in the North and South of the county provided by the Powys Independent Mental Health Advocacy Service who can support them.

I’m moving to Powys soon and need mental health support (or my family member does)

Moving is one of the most stressful things we do, so combine that with pre-existing mental distress and understandably people are keen to find out what they can do to make the move easier.

• If someone is already receiving support from a Community Mental Health Team in another part of the United Kingdom, then it’s a really good idea to liaise with that team well before the move takes place. That way the old CMHT can link up with the new team and the transfer will work so much more seamlessly.
• Otherwise, the route for a newcomer to Powys into mental health services is pretty much the same as it would be for anyone already resident in the county – a visit to the GP will be top of the list. However, there is an exception to this – which is available for people moving to Powys from another part of Wales. The mental health law in Wales (Mental Health (Wales) Measure) states that if people have been discharged by secondary mental health services during the past three years then they can go straight back to the mental health service which was looking after them before and ask them to check whether they need any further help or treatment. 

Can you tell me the contact details for the Powys Community Mental Health Team

And to round off this post, one of our all-time top asks! How do you find your local CMHT? Especially when there are five different teams covering this enormous county which is Powys, not just one?

If you didn’t already know, the five teams are based in Welshpool, Newtown, Llandrindod Wells, Brecon and Ystradgynlais.

And the best way to find each CMHT’s contact details is by checking out our webpage Getting help and support in Powys.

And that's the end of this round up of some of our top questions! If you have a question for our Information Service which isn't answered in this blog post, then please get in touch by ringing 01686 628300 or 01597 822191 or email: mailto:mentalhealth@pavo.org.uk 

PS: We have our deerstalker caps at the ready!

Psychoeducation for Bipolar Disorder

We recently found out about a new support initiative in Powys for people diagnosed with bipolar disorder. We asked Paul Gauci, who works at the National Centre for Mental Health in Cardiff, and Julie, a recent participant on the course down there, to tell us more. 

Talking therapies often involve individual, one-on-one sessions, but a programme being run by the National Centre for Mental Health (NCMH) is using group sessions to help improve quality of life for people with bipolar disorder.

Bipolar Education Programme Cymru, or BEPC, is an award-winning group education programme developed by the Centre and their colleagues at Cardiff University.

It aims to help people with bipolar disorder to better understand and manage the condition, identify early warning signs of highs and lows, and develop the skills needed to stay as well as possible.

By delivering the programme in a group setting, people have the opportunity to share their personal experiences of living with bipolar disorder and to learn from each other, as well as from the course. It also gives the programme a more social element, making it more enjoyable and encouraging participants to attend all the sessions.

For many people it might be the first time they’ve ever met anyone else with the condition, so it can be a very positive experience for them to know that they aren’t the only ones affected by it.

There are 10 sessions, in groups of up to 15, each lasting for between two and two and a half hours. These combine presentations, informal group discussions and short exercises. The sessions include:

• Introduction.
• What is bipolar disorder?
• What causes bipolar disorder?
• The use of medication in bipolar disorder.
• Psychological approaches to bipolar disorder.
• Lifestyle issues and bipolar disorder.
• Monitoring mood and identifying triggers.
• Early warning signature.
• Bringing it all together.

Family members and carers of the group participants are also given the option to attend an additional session where they can find out more about bipolar disorder and meet other people in similar situations.

Courses have been delivered throughout Wales, and an estimated 570 people have benefited from taking part, including 65 in 2015 - 16. The model has also been adopted internationally, with healthcare providers as far afield as New Zealand, the Netherlands and Turkey running courses based on BEPC.

A participant’s view...

Julie

I first became unwell in my 20s and I was diagnosed with anxiety and depression. It was the start of a very difficult time in my life where I really struggled with my illness.

I also experienced what I now know were manic episodes, which could be just as devastating as my episodes of depression. I’ve gotten into very dangerous situations and the aftermath can be terrible.

I was diagnosed with bipolar disorder following the birth of my son, and the medication has been helpful although my mood still fluctuates and I can become very unwell. My psychiatrist told me about BEPC and recommended I try it.

The day I started the programme I was really nervous, but the facilitators really made me feel at ease. I found it amazing to meet people with the same diagnosis as me - all from different walks of life - different cultures and ages experiencing the same struggles.

I learned about managing my lifestyle, relapse prevention and early intervention through being aware of triggers and early warning signs. I also completed a manual as we went through the course which was tailored to my needs. I still use it today and it forms the basis of my care plan - I call it my bible.

This programme changed my life and I’m almost certain it has saved my life. I have gone from coping to managing my bipolar disorder.

BEPC in Powys

A new course will be running in Brecon, beginning on Tuesday 27 September, and then running every Tuesday for 10 weeks. There may be an 11th week, depending on whether there is demand for a friends and families session.

For more information contact the NCMH on 029 2068 8399 or email bepc@ncmh.info

About NCMH

The National Centre for Mental Health is a research centre made up of researchers from Cardiff, Swansea and Bangor Universities. It is funded by Health and Care Research Wales, and aims to improve treatment, diagnosis and support for people affected by mental health problems including bipolar disorder.

The Centre is looking for volunteers to take part in its research - it takes under an hour and can take place in your own home. Find out more about taking part.

Norman Lamb at Brecon & District Mind

Roger Williams MP, Norman Lamb MP and Val Walker, Service Director of Brecon & District Mind

Last Thursday Brecon and District Mind hosted an Open Forum on Mental Health with Norman Lamb MP – Minister of State for Care and Support. The session was facilitated by Roger Williams MP for Brecon & Radnorshire. During the hour-long session many important issues were covered, including changing the health system to put mental health on a parity with physical health, the failings of the system for children and young people, concern around funding for vital third sector services in the community such as Brecon Mind, and the needs of carers. Norman’s talk was followed by a Q&A session with Brecon Mind members.

There is not space to cover the entirety of the Open Forum here in one blog post, so we have highlighted some of the points that Norman made during his visit. 

Disparity between services for mental and physical health

I wanted to say something briefly about my complete passion for mental health. 1 in 4 of us at some stage in our life will experience some form of mental ill health. It may be mild depression or anxiety or it may be something more enduring. Most families are touched by it in some way. Our family very much is. What I talk about is not just because I happen to have a job as the Minister for State responsible for mental health. It is something I really care about. The thing that is quite shocking is the disparity between how people with mental ill health are treated by the system despite the great work of people working within the services. But the system, in my view, discriminates against people with mental ill health. I can talk primarily about my experience in England but I suspect it is not much different to here.

In England if you have suspected cancer and are referred by your GP you have a right to see a specialist within two weeks and a right to start treatment within a month of diagnosis. If you suffer from mental ill health, if you perhaps are a youngster who experiences a first episode of psychosis, you have no such right. There is no such entitlement to access treatment on a timely basis. And I just don’t see how that is right. We know there is a wealth of evidence that if you intervene quickly with a youngster who suffers a first episode of psychosis, you can often rescue that person, you can stop the deterioration of condition and give that person the chance of a good life. 

The Open Forum on mental health

So how unacceptable is it that those people don’t have any right to access evidence-based treatment which we know gives the person the chance of recovery. Particularly in mental health the quicker you intervene the greater chance you have of achieving a good result for that individual and potentially rescue someone from a lifetime of a pretty miserable experience for very many people - out of work on benefits, not enjoying things that the rest of us take forgranted. It costs a fortune to deal with the damage and the effects of negligence on that person. So the moral and economic case for proper investment in mental health is overwhelming. If you make the investment you ultimately end up saving money further down the track as a result. That is the central message that I have been trying to get into government, NHS England and also to apply the moral pressure on organisations locally to take mental health more seriously.

I am on a mission to try and change this (the disparity between physical and mental ill health). So in England we are introducing the first ever waiting time standards for mental health so that if you experience a first episode of psychosis the standard will be that you start your treatment in two weeks from referral by your doctor. We start by saying that 50% of youngsters should be seen within two weeks, and then progressively in subsequent years we want to increase the percentage, but you have to increase the capacity in mental health services to be able to do this.

Increasing Access to Psychological Therapies

Kirsty Williams, Assemby Minister Brecon & Radnorshire 

and Harold Proctor of Powys teaching Health Board

We have also got in England the IAPT programme – Increasing Access to Psychological Therapies. It is fantastic for mental health. For the first time we have rich data, information, evidence about how many people are waiting, how long they waiting and whether they are recovering as a result of their treatment. We can monitor the programme to understand which providers are performing well and which are failing people, where access is very poor. The result of this is that in 2010 300,000 got access to psychological therapies. This year it will hit about 900,000, an increase of three times, so it’s a big advance and a programme that is delivering massive results for people. There are thousands of people that have recovered from depression and anxiety. The evidence is very strong; not only of recovery but that if you invest money you achieve a saving in the long-run. You get people off benefits, you get them back into work, you give people a good life with the chance for self-respect and some dignity.

Crisis care

Crisis care is where the disparity between physical and mental health is probably at its greatest. If you suffer from a physical health problem the system may be under pressure but an ambulance will arrive and you will be taken to an Accident & Emergency department and you will have access to a specialist who understands your condition. If you have a mental health crisis it is completely haphazard what happens to you. And you could end up in a police cell. This is intolerable in a civilised society.

So last February we published the Crisis Care Concordat. We got twenty national organisations to sign up to it. It is the first set of standards for crisis care in mental health that we have ever had. It tells you there that there should be a 24/7 helpline available so you can get access to support any time of day and night. There should be proper liaison psychiatry in hospitals, and in A&E if your problem is a mental health problem you will get access to a specialist. It critically says we should end completely the practice of putting under 18s in police cells and halve the number of adults who end up in in police cells this year compared to two years ago. In my view it should become a “never” event. Parts of England have demonstrated it is possible. They don’t get more money, they have just organised themselves better.

The role of carers and the Open Dialogue approach

I am acutely aware (mental ill health) affects the whole family. It can have a massive impact on other people’s lives. Providing support for the whole family is critically important. There is a very interesting development called Open Dialogue. It is the approach they use in Finland. The whole idea is that it is a recognition that mental health is crucially related to relationships with other people, and to try and deal with someone’s mental ill health in isolation is a mistake. Their whole approach is that when crisis occurs you get the whole family engaged straight away.

It’s absolutely the case that a family trying to cope with mental ill health very often has no idea how to handle it, whether what they do has an adverse or positive effect, whether to be tough with the person or gentle and understanding. Getting the balance right is so often incredibly difficult, so to involve the whole family seems a very attractive approach. There are now four trusts in England that have taken this approach and pooled some money between them to train psychiatrists and other health workers to develop the model in this country and critically to evaluate as they go through.

Transition from children’s to adult services

We have a massive issue with this cliff edge at 18. You get to 18 and are then told children’s services come to an end. You’re suddenly told you’re in adult services. 18 years old is a very difficult age for many people. They are going through real transitions in their own lives, maybe going to university, maybe leaving school, it may be all sorts of teenage angst that you are trying to cope with in your own mind, and to suddenly force a complete change of service seems completely daft. I’m trying to force a move away from a one size fits all date for transition. It’s often “abandonment” to be honest. A service needs to stick with someone if that’s the appropriate thing to do. There are several areas, my own county of Norfolk, where they have a youth service that takes you through to 25. Because it is a youth service it is more attuned to what might be more appropriate for you at that point in your life.

I also think third sector organisations working collaboratively with statutory sector organisations are more subtle and pliable in getting the right response for a youngster. So I think a collaboration between statutory and voluntary sector services works more effectively.

Janet Pardue-Wood, Acting Director of Mind Cymru, meets 

Kirsty Williams AM and Roger Williams MP.

Voluntary sector

My view is that the voluntary sector plays a crucial role. When I was at Gofal earlier they were talking about how they had entered collaborations with some of the health boards around Wales. We have this awful problem of people being put into out-of-area placements, often a long way from home. There is no ambition to give them a better life, they are just hidden away from view at enormous cost to the tax payer, it is an extraordinary outrage really. Their role can be to identify these people and find a mechanism to get them back into community and rebuild their life.

Gofal gave a wonderful example of a woman who was a serious alcoholic whose life was in a complete mess, she had been in secure accommodation. She is now living back in her own home and working in a charity shop three days a week. She contributes to local community efforts, she has a life. It’s fantastic. Three or four years ago no one assumed she was capable of that, she would just have been locked up as a risk or threat to everybody. It does not have to be like that.

Roger Williams rounded off the session by complimenting Brecon & District Mind on the work that they do in their community and thanked them for hosting the Open Forum.

Thank you to Freda Lacey and Brecon & District Mind for providing photographs from the day.

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.

Revving up Powys Info Engine

Claire Powell has been working for the past 11 months at PAVO as the Third Sector Broker and Info Engine Officer. Amongst many other things she has supported organisations in the mental health voluntary sector to get their details uploaded to Info Engine so that anyone with an interest can find out more and connect.

Naturally we wanted to find out more about someone with such a long job title! So we caught up with Claire at her PAVO base at Ddole Road in Llandrindod Wells to ask a few questions.

It sounds as if you wear two hats… tell us more about them.

Yes I wear two hats, often more than two and I am not even a ‘hat person’!

Wearing my Broker hat I work in the Comms Hub with Adult Social Services and health workers to raise awareness of all the voluntary services in Powys. Sometimes people reach crisis points in their lives because they are not getting the right support. My job is to make sure social workers, doctors and other professionals know about a variety of voluntary services so that every person has the opportunity to get the support they need. I spend a lot of time doing internet research and making phone calls to get the right support for each client.

I wear my Info Engine hat with geek glasses, I manage Info Engine which is an online directory of services, and my job is to make sure as many services are listed on the directory as possible and that people like yourselves use it to find out what’s happening in your area. A lot of the technical mumbo jumbo goes over my head but I am learning a lot at the same time and I get to go out and visit lots of groups to tell them about Info Engine! It’s the first directory of its kind in Powys and something I am very proud to be a part of.

What are the most challenging aspects of the role?

Currently I am the only Third Sector Broker in Powys so trying to be everywhere at once is difficult. I think the most challenging aspect of my role is changing a long standing culture with health and social care professionals. Until now they have managed using very few voluntary services, but due to the recent budget cuts they are having to rely more and more on external services which means that clients will have more choice in the services on offer.

Talk us through a typical enquiry coming through the Comms Hub

To give you an example, a recent call came in from family member calling in to Social Services asking for a social worker to visit their son who is in his mid 20s and has a physical disability. She was worried that he is becoming lonely and ‘depressed’. In this case the son wasn’t aware that this call was being made which happens quite often. We always explain that we could not refer him without his knowledge – this can be difficult for loved ones to understand but client choice is at the heart of everything we do.

I then sit with a duty social worker and the person who took the call and chat about what support we could offer. It was decided that this would not be a case for Social Services and I offered the caller a list of local activities, clubs and volunteering opportunities which could be suggested to the son. This is very much a case of preventing things getting worse for the son.

In another case I referred a lady to Hafal because she was struggling with her own health and was caring for her partner who had mental health issues. This was very successful and led to the prevention of a crisis situation for the couple.

We are often asked for hard copies of service directories. What does Info Engine offer that is better?

• Info Engine is instant - information at the click of a button.
• Services update their information regularly so unlike a printed directory the information remains fresh.
• Info Engine is with you wherever you go – as long as you have a mobile, tablet or are near a computer with internet access you can use Info Engine.
• If you want to know more about each service you can click on a link taking you straight to their website – Simples!
• There are also new services popping up across the county which you would never discover thumbing through a printed directory.
• And of course – Info Engine saves the planet – just think how many trees are chopped down to make a paper directory! 

People sometimes say they are suffering “information overload.” As a tool, how does Info Engine offer solutions to this situation?

You can carry out a really specific search such as ‘Hedgehog rescue 5 miles from Howey’ and it would only bring up a single entry rather than having to sift through every animal rescue centre in Powys! This is an odd example but someone did re-home a number of hedgehogs after discovering the Howey Hedgehog Rescue using Info Engine!

We also encourage all services registered to keep their information brief and to use straight forward language not jargon! The use of fancy, unnecessary language is a pet hate of mine.

What is the most valuable thing you have learnt since you started your new role?

Prevention is better than cure and services must work better together to help people get the support they need as early as possible!

What do you like to do in your own time, when you’re not working for PAVO?

I love walking my Springer Spaniel puppy Jack – although it’s usually him taking me for a walk! If I have had a difficult day at work I like to slump on the sofa and get lost in a Disney film.

Thank you so much Claire for talking to us! If you would like to find out more about Powys Info Engine and the work Claire does at the Comms Hub at Powys County Council you can email infoengine@pavo.org.uk or tel: 01597 822191.

Have you tried using Info Engine yet? Let us know what you think by commenting below. If people do not have access to the internet and require information about mental health services and organisations we can do the search on Info Engine for them and still send out printed material - so everyone is catered for and we still save many many trees!

Introducing Tim Skelcher of Hafal

Tim Skelcher is a name familiar to us as he was previously a DIY Futures co-ordinator working here at PAVO. Since May this year Tim has worked for the Powys Seibiant Family Support Service for Hafal in Powys, and we talked to him just as he was about to launch a new carers' group for Newtown.

Tell us about your new role

My new role with Hafal is mostly about supporting carers of people with a mental illness in Powys, through both one to one support and through mutual support through carer groups. The service provides carers with news, information and advice; as well as providing short breaks for carers through providing activity based support for those they care for, along with the opportunity to focus on recovery using goals set with either their Care and Treatment Plan or Hafal’s Recovery Programme. The other aspect of my role is representing Hafal across Powys at events and meetings.

How is it going so far?

I think it’s going well. I’ve been busy introducing myself to people who use the service, as well as to lots of agencies around Powys. I’m also enjoying becoming part of the Hafal team, and learning about what makes them so effective in Wales.

What are your aims for Hafal in Powys?

Broadly my aims are to provide support to people in Powys with mental health issues and their carers, and to help them to have their voices heard. I’d like there to be more carer groups focusing on mental health throughout Powys, as there is only currently one Hafal group which is in Brecon. I will be working towards getting one set up again in Newtown as a priority, and will follow that with other groups. I’m also working towards making the Family Support Service cover Powys more evenly, as historically it was based in south Powys, with more support being given in the south.

What do you bring to your new role from your DIY Futures experience?

DIY Futures was where I learned about Recovery. I gained a strong belief in people who feel stuck being able to take control of their lives, make changes and get the lives they want. I’ve taken this with me to Hafal, where these beliefs are shared.

Tell us about some of the highs and lows working in the field of mental health

For me the highs are mostly about seeing people make changes, that before they only hoped and dreamed were possible. Almost without exception these have been achieved by a series of small steps. Also I think it’s inspiring when people develop services to help themselves and others facing similar issues, or when they influence change in services. The lows are simply when people aren’t listened to, or aren’t valued.

Have you been inside that famous Hafal VW campervan yet and what did you think?

Yes, I was at the Royal Welsh Show with Hafal recently, and the campervan was there. It really worked to draw people to Hafal’s stall, and gave us the chance to talk to people about mental health issues who, without the campervan, we may not have reached.

Thank you Tim! The first Newtown carers' group meeting which Tim referred to takes place on Wednesday 25 September 2013, 2 - 4pm, at Ponthafren, Longbridge Street, Newtown, SY16 2DY.

You can contact Tim for further information about the new group in Newtown, or with any other queries about his new role and the work of Hafal, by ringing 07875 373525 or emailing: powys@hafal.org