Friday, 7 October 2016

Thank goodness it's Friday in Knighton!

This week's guest post is by Doreen Matthews - a member of the thriving Knighton Mid Powys Mind Friday group. It was written at the height of summer 2016.

I love Fridays. So say the members of Knighton Friday Group.

We meet as friends, share stories and experiences of our lives and talk of what our week has been like. The group is so important to us. Life for most of us is not easy, events may have happened to us which cause anxiety and depression, but one of the big things in life is loneliness.

I met a friend who I have known for many years, and I was asked to have coffee. I was in a hurry, but I did stop and we talked about many things. The comment was: “My world has got smaller; I seem to have lost confidence, so find it hard to live my life, and feel rather worthless.” This person has tried to find help but does not like groups and when seeking help it has not really worked. I could not find answers, but I did listen and give gentle understanding. As we parted the remark from this friend was: “I feel so much better now that I have met you today. I always feel better when I meet you.”

The comment: “My world has gotten smaller” has stayed with me. I thought my world had gotten smaller too since my husband died. I have lost so much confidence, and if I did not make the effort to go out and meet people I would end up a very lonely person.

Friday Group has been so important and good for me, and I have been a member of Mid Powys Mind for 15 years and I have learnt so much from the activities. Doing a craft and being creative is so good for the brain. I feel more relaxed and my spirits uplifted. It takes me out of my casual domestic world.

Over the years I have seen members come and go. We have had our highs and our lows, sometimes despairing as to whether we can go on. Something always happens. A new member comes along - a new friend and we feel encouraged. I do wish people would realise how special and important they are to the group - I always like to see who is coming in through the door.

When someone comes along for the first time we know how hard it is for them to walk into the room. First impressions count and we can make or break at that first meeting, so we have to be careful how we deal with this. When people ask us “how are you?” the usual answer is to say “I am fine, very well”. The truth is in many cases they are not fine and sometimes want to talk. We must remember to give them the chance to talk, but with our own busy lives we tend to just hurry along. A nice smile can do wonders; a cheerful considerate person can make a difference. A nasty remark will put people down for hours.

Earlier this year we were told there would have to be a cutback due to lack of funding. We took on the running of the group ourselves straight away, with involvement from Mid Powys Mind. We all put a little extra money in to give us a working fund, and the Rotary Club gave us a generous donation to keep us going. We used some of the money to buy season tickets to The Whimble Nursery Garden. The tickets allow a member to visit the garden whenever they want. It is a place of beauty which is a natural therapy to make us feel better. We are using the gardens for some of our meetings and our next visit will be reading poetry and taking in the scents and colours of this lovely garden. We will have tea and cake and perhaps buy a plant. Walking through the wild flower meadow on our last visit with friends made us feel we were in another world. We had a visit to Monkland Cheese, of course we all now know how to make cheese, but we haven’t got a cow so we will leave it to the experts!

Some of our activities this year have included: chalk painted wooden spoons, making pretty boxes, woofing down homemade rhubarb and strawberry crumble, and cream gateau, and last week we made raffia mats which resembled Hobnob biscuits. Oh yes, we love our crafts. We really enjoyed “Havin’ A Laugh” with the comedians, they found us very comical; we ladies taught them a lot about life.

We felt, as a group, that we would like to reach out to others and it was decided we would make little posies for the Queen's 90th birthday. The result was breathtaking when we looked. Our work, arranged in baskets, was then taken to Cottage View Residential Home. The shades and perfumes of roses and sweet williams just gave off a feeling of joy and happiness. We had collected so many flowers and the happy “buzz” of busy bees being creative made me just stop and listen to our ladies. I thought of how happy everyone sounded, we were friends together, so contented in one another’s company. We all went up to Cottage View Residential Home and presented each resident with a dainty bouquet as we all sang Happy Birthday to the Queen. The feedback from the home let us know how glad they were to have us there, and we hope to return again.

The group has become very strong and we are getting new members. Everyone is so enthusiastic, putting in an effort to make things work. “We make our motto, we can achieve anything”. I think we can be proud of ourselves, and we are becoming noticed in Knighton.

We are now looking forward to an afternoon picnic at Aston-on-Clun on a member's lawn. Then we will be dancing with Powys Dance, we just love that! Our imagination makes us swans, sugar plum fairies, salsa dancers, fashion models or whatever we want to be.

The great thing about our group is that we are friends who care about one another, friends who laugh and have fun.

The Knighton Friday Group meets every Friday 1 - 3 pm at St Edwards Community Room, St Edwards Close, Knighton. 

If you would like to find out more about the group, which is supported by Mid Powys Mind, please ring 01597 824411, or contact Nic Williams by emailing:

Wednesday, 28 September 2016

Ponthafren: out of hours, full of ideas

Chinese Night at Ponthafren Association
Barbara Perkins has been working at Powys Association of Voluntary Organisations (PAVO) for three years now as the Community Voice Officer for the One Powys – Connecting Voices project. Originally three days a week, this post went down to one day earlier this year as planned in the original lottery funded bid and in May she started a new role as the Out of Hours Centre Facilitator at the mental health charity Ponthafren Association in Newtown, North Powys.

I caught up with Barbara on one of her PAVO days at our Plas Dolerw base to find out more about her new role.

Tell us more about your role at Ponthafren

I have the great job of working with members of Ponthafren on two days a week. I organise information evenings and social evenings. 

Of an evening I will chat to members and this gives us a chance to get to know each other. It may be that someone will pop in and see me because they are dealing with a particular crisis and need a bit of support or it may be they will pop in looking for company or advice on local services. 

Everyone is welcome and at an annual membership fee of £2 Ponthafren is a great place to be involved with. Just recently we held a Chinese evening with members arranging a Chinese meal to sit down and share together.

Every evening is different but all are interesting

How is the new job going so far?

I have been well looked after both by staff and management but most of all by Marg. Marg is a dedicated volunteer who comes in every Monday and Wednesday evening to ensure the quality of service at Ponthafren. As one of the longest serving members of the team, Marg has taken me under her wing and helped me navigate through the first few months in this new job.

What do you bring to your new role from your experience as the Community Voice Officer?

As the Community Voice Coordinator at PAVO I was already fortunate enough to be working with the Ponthafren YAPS* project and was aware of the valuable work being undertaken at Ponthafren. PAVO has a huge amount of information and can signpost both individuals and organisations to the many, many services available in Powys. Awareness of the role of third sector brokers and, of course, knowledge of Info Engine (Welsh online services directory) has been very helpful. In addition, in my working life I have gained experience in third sector services, social housing, learning disabilities, the benefits system and domiciliary support (yes I have lived quite a long time :0). I feel that all these experiences contribute to my life skills which I am able to make use of and share in this new job.

*The Young Adult Peer Support project offers peer support mentoring to young people (16-25 years old) who experience mental health issues by helping to give them a voice of their own in the development of services.

Housing advice session with Auden from
Mid Wales Housing Association
What kind of activities have you been organising for the members? Which are the most popular so far? 

If anyone reading this article wonders what is already on the Newtown Ponthafren calendar for future evenings, I can tell you that we have more from story teller Rod Evans, film night, your housing questions answered, meal deal night, woodcarving, nocook cooking to name but a few. We also organise video links with our Welshpool centre and members can chat with each other over the internet.

You work with volunteers at the Centre, what qualities/skills are you looking for in new volunteers?

If anyone is interested in looking for volunteering opportunities then Ponthafren can provide free training to provide a better understanding of what it means to be a volunteer. Everyone has useful skills that can be valuable and volunteering can be a good way to identify them and put them to best use. Whether you are a natural talker or listener, very creative, like to make everything neat and tidy or are a whizz on computer games and computers, everyone has skills. You may be a gardener or love to garden (yes, some people do enjoy pulling weeds) or a handyman or be blessed with other skill. Why not share them and look at the opportunities to volunteer.

If someone was feeling isolated or a bit down and considering calling in to a Ponthafren evening session but was feeling unsure, what would you say?

The biggest step if you are feeling isolated is walking through that front door for the first time. Why not have a look on our website or our notice board outside the centre and see what is going on. You may be able to find an activity that you could sign up for (perhaps with someone else). You are also welcome to pop in on a Monday or Wednesday 16.30 – 21.00 and just ask for Barbara. I will happily introduce myself and colleagues and members and show you around. It will also provide an opportunity to learn more about what we can do to help you.

Curry night cooking in the Ponthafren kitchen
What are the main challenges of the role?

TIME – every evening goes by in a flash and inevitably we are trying to get things done. It is important to be there for the members and some evenings are very very busy but some can be very chilled.

Tell us about some of the most rewarding work you have done with Ponthafren to date

I recently approached one of our members to ask if he could do some volunteering for a day helping at an event. He actually thanked me for the opportunity when I was so very grateful for the difference he had made with his hard work. WOW that was humbling.

When you are not working for Ponthafren, how do you enjoy spending your time?

I am currently spending time getting fit. In January I had actually started using a walking stick at times. I am now averaging about 4-5 miles (our poor dog is exhausted) a day along with some weightlifting (not very feminine but good fun) so feeling so much fitter. I also volunteer for a group called Meeting Point Montgomeryshire (MPM) which organises events once a month that are available to anyone who is feeling socially isolated. The events are fully wheelchair accessible.

To find out more about the Late Night Openings at Ponthafren Association in Newtown, please ring 01686 621586 or email

Monday, 19 September 2016

Festivals and the wellbeing scene

courtesy Shambala Festival
by guest author Philip Moisson

During this blog I'd like to talk about the Powys Five Ways to Wellbeing and how they interact with the experience of summer festivals – now that the season has come to an end. 

This year I was one of the thousands of people of all ages and backgrounds who volunteered for Oxfam as a Festival Steward. There are many festivals around the UK and beyond, and Oxfam provides the stewards for a good number of them. I was at the glittery and costume filled world of Shambala in the Midlands. In return for three shifts, and including three square meals, you can enjoy the festival experience for nothing – whilst earning money for Oxfam's vital work at the same time.

Philip Moisson
The stewarding scene at Shambala Festival this year was the friendliest I've ever known – and I had an amazing, almost spiritual experience which caused an acute 'mental health' reaction (think clenched fists, inner turmoil and shouting followed by hours of tears) – but thanks to the support and sound words of those around me I feel I can remain healthy and well since processing this

I did however receive absolutely first rate support from Oxfam and the security staff at the festival, which is pleasing to say.

So, let's look at the Powys Five Ways to Wellbeing. They are based on the following: Take Notice, Keep Learning, Connect, Be Creative & Give and Be Active. I want to talk about how a good festival experience can impact on yours and others wellbeing, and also to discuss how hard we should be working and partying.

The first thing you do in regards to your wellbeing at a festival is Be Active. Dancing is something that almost everyone can do and enjoy –  whether they have mobility problems or not. It is social, physical and healthy.

The second thing you do when you dance is Be Creative & Give – and just as dancing is very creative it also helps when you give love to the artist on stage, who in turn performs with all of their energy for the crowd. It's worth mentioning that stewarding is a very giving role, so if you volunteer for Oxfam you will be all over this element.

For people who go to festivals or who steward, a good festival will push your boundaries and encourage you to Keep Learning. Stewarding is a challenge, and even if you are a regular participant you should be ready to join talks and debates and take part in workshops.

I always find at Shambala that the harmonious ensemble of the senses at most times causes me to reflect and Take Notice. Knowing how you feel when the music is playing and the atmosphere is heightened, and then knowing how you feel about your more normal life – is essential to making the playground of the festival have an impact on your daily routine.

And finally, let us all agree that we would hope to Connect at any festival gathering, large or small. Connecting involves making and cherishing friends and partners and family, and extending this love outwards in perpetual circles. 

courtesy Shambala Festival

So, if festivals are good for your mental health, what went wrong for me recently and what was the good practice in mental health? Similarly, are there lots of youngsters pushing themselves to the same sort of distant extremes, but with drink and drugs, and therefore negating the effects of the Five Ways?

Stewarding for Oxfam at Shambala meant being part of a family of people who lived and danced, ate and slept, laughed and sometimes cried together. I was hugged at Shambala more times than ever before, and that was before my moment of severe anguish.

On a busy festival Saturday night I was on my stewarding shift at the Stiletto Disco venue, helping, interacting with, and chatting to, festival goers. The night was long and we gave every ounce of energy we had into making the venue swing and into keeping the crowd and short but constant queue as happy as possible. At some point before 5am, I sadly met a man who was in a bad place, and he connected with me emotionally.

I rejected his drunken and poor attitude –  and when I lost my temper I had clenched my fists with all my might and had to howl towards the heavens in horror until he left me alone. However, if it hadn't been for the security guard who asked me first “What happened mate?” then I might not have calmed down so quickly.

Similarly, Oxfam quickly moved to protect me and relieve me of stress and worry and any further compulsory duties. I was taken to the Welfare Tent – a place for tea and empathy. I was told I had nothing to feel bad about, but the heartbreak at meeting someone who wanted to ruin the perfection of the festival left me weeping in my colleague's arms until the following day.

I'm fine now, and will be back next year for more. Be prepared to assess your wellbeing at a festival, and consider the range of places you can steward for Oxfam –  it comes highly recommended and they will offer you a first rate experience brimming with happiness and love, and then, as in my case, 100% support if things don't go to plan.

Finally, let’s be frank, we all know that festivals can involve drug taking for some people. It’s important that those who do educate themselves about what they are taking and why. There is a not-for-profit community interest company called The Loop “that aims to promote health and minimise harms in nightclubs, bars and festivals. It provides information, outreach and interventions by trained and experienced staff about alcohol, drugs, sexual health, mental health, crime and violence.” Thanks to The Loop some festivals are even offering free drug testing now. These drug testing kits can provide a safer experience for those who like to take things away from the ordinary run of the mill of streets, roads and offices into the primal nature of musical communion in a place which is as follows:

"Shambala is a space to play, to reinvent, revitalise, and return to the world fueled-up on the beauty of being alive. It’s a playground, a realm for wild experimentation and alternative education, where unforgettable life skills are shared, learned and put to use.

We see Shambala, as so much more than just a monumental party, it’s a haven, a think-tank, a happening - all infused with a heartfelt, purposeful hedonism. So let’s revel in being human, in all the things we do so well - the euphoric heights to tangible solutions - and see how much we really can do together.”    Shambala Festival

Many thanks for Phil for writing about the Five Ways to Wellbeing from a festival point of view. You can read more about the Five Ways in our team blog post. Do the Five Ways work for you? Let us know what you think in the comments section below.

Thursday, 8 September 2016

Second Chances, New Horizons

Matt Clark (second from left), retiring Reserve Warden, Montgomeryshire Wildlife Trust

This week's guest post was first published in the latest edition of the Montgomeryshire Wildlife Trust News. Many thanks to the local wildlife charity for allowing us to republish here.

Volunteers are vital to the Trust’s work – we simply couldn’t do it without them! We are also grateful for the opportunity to make a real difference to people’s lives, as this letter from retiring reserve warden Matt Clark shows:

In February 2012 I had just been released from HMP Altcourse after serving 9 months for what I still class as a despicable crime of fraud and forgery. On returning home I was unable to go out without my parents for I lived in fear of retribution. I was diagnosed with manic depression and, as in prison, I was under the care of a mental health team due to attempts to take my own life.

In March 2012 the Montgomeryshire Volunteer Bureau suggested I try a visit to the Nurtured by Nature project at Severn Farm Pond. I went along in the first week of April and lasted all of 6 minutes. It was just too much for me - all those eyes looking at me and judging me, as I thought. But the following week I went again and stayed for the whole session. I started to attend unaccompanied and quickly realised that I wasn’t being judged at all, that one’s past can be left at the door. I was able to go there and share my interest in wildlife, under the leadership and later friendship of Mel. I was able to find my feet and in August of that year I was able to go to Tesco on my own to buy a paper - a huge achievement.

I worked at the pond for 3 years every Wednesday without fail. Whilst there I have learnt more about myself, have a better tolerance of people and have learnt how to build bug hotels, bird boxes, adapt habitats for the benefit of wildlife and learnt about wild flowers. My general knowledge has increased widely and I have built up the courage to join many other wildlife groups and Trusts. Over the time I spent at the project I was able to express myself, to tell my story and not be judged. Through the project I have met a chap from a completely different walk of life who has turned out to be a dear friend, something I would never have done before.

Prison strips you of everything - self-belief, self-respect and freedom. The project gave it all back to me as well as a sense of belonging. I was fortunate to be made warden of Severn Farm Pond which was a huge honour. To be given that chance in life to give something back was truly excellent. As a result of the self-confidence I have gained from the project I now run my own business, have been signed off by the mental health team and am starting a new adventure in my life.

If anyone gets an opportunity to join or work with MWT or at Severn Farm Pond then do it. It will change your life for the better, I guarantee it. As I have said before, Mel* and the project changed my life. The sessions at the reserve mean so much to the people that attend them. I’m sure I’m not the first and I won’t be the last to pass through the Nurtured by Nature project and be so much better for it.

Many thanks for Matt for sharing his story with a wider audience. Have you volunteered in conservation work? How has it impacted on your mental health? Tell us more in the comment box below.

*Mel Chandler is the MWT Community Partnerships Officer. She works with local community, voluntary and statutory agencies to develop outreach projects, such as Nurtured by Nature, which promote and connect people and the natural world. You can contact Mel to find out more by emailing or ringing 01938 555654.

Thursday, 1 September 2016

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...

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

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.

Thursday, 25 August 2016

Taking pride in diversity

by Anne Woods, Participation Officer

For the last three years I’ve volunteered in various ways at the Pride event in London. I was born in London and spent a large part of my life there and so it’s a good opportunity to head back and get involved. After a stint as a senior steward in Soho, managing a team of people to look after the public, I fancied being closer to the parade – a colourful, joyous march through the streets of London: a celebration of the freedom to be whoever you want to be. So in 2015, in the first year of the programme, I volunteered to be an official flag bearer, carrying the Cuban flag along with flagbearers representing countries from around the world at the head of the parade.

Anne, far right, watching Jennifer Saunders and Joanna Lumley at Pride in London

This year, I was proud to carry the flag of Afghanistan, again heading up the parade behind the Mayor of London, Sadiq Khan and the event directors. The flag bearers create a visual message of support to LGBTQ+ communities around the world. Although in the UK we now have equal marriage and legal protection from discrimination based on sexual orientation and gender identity, in many countries relationships with same-sex partners are illegal and ‘punishable’ by imprisonment or even the death penalty.

Even in this country homophobia and resulting discrimination is still having an impact on the emotional well-being of LGBTQ+ people. Various research by Stonewall 
has shown that LGB people suffer more mental health problems than the general population. This is not as a result of their sexual orientation but due to bullying, harassment at work, rejection by family and poor attitudes of healthcare professionals. Levels of depression and suicidal thoughts are much higher amongst young people who have been bullied about their sexual orientation than those who haven’t. Three in ten bisexual women and two in ten lesbians have had an eating disorder compared to 1 in 20 (0.5 in ten) of the general population. 

That’s why Pride events are so important – as a vibrant display of our commitment to equality and human rights, a demonstration of support to those who might not currently enjoy those rights, an encouragement to be ourselves and to be open and tolerant to people who are different to us. All these things can help to create a more accepting society where people do not feel that they have to hide who they are or feel ashamed about being different. The Pride campaign this year is #nofilter which is all about living our lives without having to censor or hide who we are. 

As part of the Comic Relief funded Stand Up! for emotional health and well-being project, we will be working with Iris Prize in the Community, the outreach programme of the international LGBT+ film festival based in Cardiff. An important aim of the Comic Relief grant is to tackle stigma and discrimination, especially for marginalised groups of people in society. In our case, this is people who are in a minority due to their sexual orientation or gender identity, who might be disproportionately suffering emotional distress for the reasons highlighted in the Stonewall research. We will have an opportunity to explore issues affecting well-being and to create our own short film, written, directed and performed by the group. We will then host a mini LGBT+ film festival. This is an exciting opportunity to raise awareness and celebrate diversity right here in Powys.

If you would like to find out more or get involved in this part of our project, further details can be found on the Powys Mental Health website, or you can contact me by ringing 01597 822191 or emailing

The next Stand Up! for emotional health & wellbeing meeting takes place in Welshpool on Monday 26 September, 2 - 4pm, at Ponthafren Welshpool Outreach.

Thursday, 18 August 2016

Do we need a change for treatment into Eating Disorders?

By guest author Helen Missen, from North Powys

Recently I have been in an NHS system that works incredibly effectively - is a gold standard as far as the way it runs - and is evidence based.

9 weeks ago Breast Test Wales called me for a routine mammogram (I'm 50 at the end of the year). Within that time frame I have had two biopsies, many explanatory leaflets and a number of incredibly supportive phone calls. I have had consistency of care, from what I suspect are the team who will, in the event of a dodgy result, care for me long term. I have a sketchy and limited knowledge of breast cancer, one borne from a nursing career and a lot of media input. I shall, of course, read extensively and take advice from others if all goes tits up. I know, without a shadow of a doubt, that I will have evidence based, effective treatment. After all breast cancer can be a killer.

Six years ago my knowledge of anorexia was as my knowledge of breast cancer is now. I had nursed eating disorder patients during my training as a nurse on the psychiatric ward, and had heard everything that the media had falsely 'fed' me. Evidence for the treatment of anorexia was sketchy and not effective. Parents were still blamed for their child's illness.

Six years ago our family were beginning the journey with my daughter, who was then 15, down the slippery slope of anorexia nervosa.

I learned that anorexia remains the most deadly of all mental health/psychiatric disorders, killing either through malnutrition which leads to heart failure, or suicide.

I learned that neither my daughter nor we were to be blamed for her illness; this was neither a choice, nor anything we had done to cause it.

I learned that even though my daughter is a high achieving perfectionist, a good girl, those very strengths of character were her downfall, but are also her strength.

I was scared, we were scared. Seeing our daughter taken over by an illness that seemed to be killing her in front of our very eyes. As with many mental health disorders the sufferer fights a daily mental battle against their own brain which tells them that eating will do them serious harm. The trouble is when it's a fear of eating, one cannot be encouraged to 'give up' something or have a 12 step model to follow.

Anorexia is now widely acknowledged to be a biological brain disorder with genetic components to it.

The treatment is now evidence based: early intervention is key to a good recovery and full life. The medicine is food. Alongside therapy to learn strategies and tools to deal with emotions that fuel and nourish this terrible illness, there are some useful drugs.

As the brain starves the thought processing is out of control. Once full nutrition is in place the starved brain can once again function and process information through some therapies. There are many co-morbidities that go alongside anorexia, that may have some respite once the starved brain is re-fed.

We became the primary care givers, not because of the advice of the professionals assigned her at the time, but by researching the latest evidence, which is now the norm for treatment of anorexia in children: Family Based Therapy (FBT). We supported refeeding our daughter. Encouraged full nutrition of a variety of foods, and challenged the fears associated with food. Plus we worked alongside therapists and our daughter. Research is currently being carried out by The Maudsley Hospital in London (SLAM) to the effectiveness of a version of FBT in adults, with promising results.

Our daughter felt in control at the beginning of this journey, but quickly realised that she is out of control in an illness that once entrenched, is tough to fight.

There is every confidence that someone with anorexia and breast cancer, can and will recover from the devastation it wreaks on families and individuals. Anorexia and many eating disorders may lead to hospitalisation and intense treatment. Uncomfortable and distressing as it is, this treatment will lead to recovery for the majority. Chemotherapy is, I understand, distressing and uncomfortable in the side effects it induces, but necessary for full health.

With breast cancer, there are regular check ups. Watching for signs of the disease returning is the norm. The care is by a team of highly trained specialists, a breast surgeon if required, and a team of nurses, radiographers and radiologists who specialise in breast disease.

Sadly the follow up, and in fact the treatment for anorexia and many eating disorders, remains sketchy.

The fact that someone is suffering from a killer illness doesn't necessarily mean that treatment will be continuous or under the care of a specialist professional with years of experience in the field of eating disorders. Generally, for an adult, a six week course of treatment with a psychologist, perhaps a GP but seldom a highly trained specialist psychiatrist or dieticians in the field of Eating Disorders, is the norm.

Passed from pillar to post many adults are consigned to treatment that is in a grey area. Not sick enough to be hospitalised, generally suffering with the inability to realise how ill they are, and regularly not challenged to put on the weight their brain needs to sufficiently function to make a full recovery. Throw in a change of address, say to university, and the treatment becomes even more difficult. Outdated beliefs by professionals still falling short of the evidence that is readily available, shortened therapies and no continuity by expert therapists.

This is a relapsing illness which needs strong people, alongside the sufferer, to see them through what may, and generally is, a long recovery process. There are triggers that can cause a trip up in recovery.

Families, and indeed sufferers, become demoralised and tired. They need consistent and trusting expert therapists to stand alongside, firm in both the belief that recovery is possible and that the person suffering with this horrific illness can and will make it through.

We live in a forward thinking, scientific world, with resources and evidence to show that early intervention is the key to treatment. Sufficient support and encouragement, plus working to full nutrition to a point whereby a brain can sufficiently heal, (not a lesser 'number' for the purpose of professional targets), takes time and energy from all parties.

Thankfully, in the past six years, treatment in Wales for young people and children with anorexia is beginning to be treated effectively with pockets of incredible expertise. Indeed, the Welsh Assembly has one of the most thorough Frameworks for Eating Disorders, and is about to refresh it to include thoughts/actions from both sufferers and carers. A child diagnosed with anorexia now may have access to the treatment and care to see them out of the darkness and into a life fulfilled and lived. Adult care is also overseen by the framework and in some geographical areas there is occasional expertise. Unfortunately, though, many sufferers are still consigned to little or no expert help.

The media are beginning to realise that this is a treatable illness, not necessarily characterised by the photographs of immensely thin people or a set of scales.

As a mother of a daughter still suffering from anorexia I continue to fight the illness, support my daughter, and try to illicit the best possible care for her. Thankfully she has reached recovery on a number of occasions. Sadly, those occasions have generally brought around a 'backing off' of professional care, and thus a relapse. I also encourage other families starting out on the journey, signposting them to expert advice and evidence based treatment. I help to change policies and teach both professionals and families alike. I badger parliament both in Wales and in England, and I hope and pray for my daughter’s total recovery, for a breakthrough for her, and others in the same place as she is.

A gold standard NHS treatment for Eating Disorders is still not in place, but within the next few years I hope it will be. Certainly for my grandchildren the care and understanding for people with anorexia will be far more hopeful with new therapies, drugs and research already making great strides. I hope too for a new batch of GPs, medical students and indeed the public to have a greater awareness and teaching about eating disorders, especially anorexia.

For the time being I am pleased to say that the results from Breast Test Wales have been that I need no treatment and have the all clear. 

Helen’s recommended resources

F.E.A.S.T. – Families Empowered and Supporting Treatment of Eating Disorders

Anorexia & bulimia care

Beat – the UK’s eating disorder charity

Family Based Therapy – the Maudsley Approach

The New Maudsley Approach – for professionals and carers of people with eating disorders

Books to read

How to Help your Teenager Beat an Eating Disorder, by James Locke and Daniel Le Grange

Skills based Learning for Caring for a Loved One with an Eating Disorder – the New Maudsley Method by Janet Treasure

Anorexia Nervosa
by Janet Treasure and June Alexander

Anorexia Nervosa: a Survival Guide for Families, Friends and Sufferers by Janet Treasure