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.

Embed from Getty Images

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 anne.woods@pavo.org.uk

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

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

Powys Befrienders - it’s given me back my life!

“Individuals who are socially isolated are between two and five times more likely than those who have strong social links to die prematurely.” 

Michael Marmot (2010) – Fair Society, Healthy Lives.

Last year we heard from the then Project Co-ordinator, Rachael Beech, about this really successful lottery funded befriending project. She told us it is "so much more than a cuppa and a chat".

Rachael has recently moved on to work with Action for Hearing Loss in Powys, and Befrienders’ colleague Jill Ball has taken over the reins, in this, the fifth year of the project. It seemed like a good time to catch up with progress, particularly as the service has developed to meet the changing needs of clients. As well as 1:1 support Powys Befrienders now holds regular group meetings and occasional days out.

First of all Jill gives us some of the project basics:

Powys Befrienders is a five year Big Lottery funded project delivered by Powys Association of Voluntary Organisations (PAVO). The service currently provides a 1:1 and Group Befriending service Powys–wide, delivered by volunteers and paid staff to people over the age of 50. The aim is to support them to maintain and improve their independence and wellbeing. The service is quality assured having met the Quality in Befriending (QIB) quality standards in all 9 areas – it is the first befriending project in Wales to have achieved this prestigious quality assurance standard.

Powys Befrienders’ interventions produce measurable improvements, evidenced by ‘Outcome Star’ data, in the following areas:-

• Optimising independence.
• Maximising wellbeing through choice and control.
• Focusing on prevention.

The service has Outreach Officers across the county who liaise with other health professionals to deliver the Befriending Groups and 1:1 opportunities. The criteria for becoming a client of the befriending service are:

You live in Powys, you are over the age of 50 and that you are isolated or lonely. People can self-refer into the service or be referred by a friend, family member or health professional.

Trained volunteers who also have a DBS (Disclosure & Barring Service) check are matched to clients and do a whole variety of activities with them. The activity is dictated by the client and some examples are swimming, singing, playing dominos, chess, shopping, walking, going to the theatre, lunch out, and dog walking.

The Group Facilitator for North Powys – Lesley Austen, tells us how the project has evolved:

Well, the project has evolved in the North in quite a haphazard way really! We seemed to have either clients in an area or volunteers - never both in the same place to make one-to-one matches.

The groups mostly started quite small, bringing together sometimes just 2 or 3 people (and occasionally just me and a client!) in a mutually convenient place - usually a cafe (saving the cost of venues and I don't have to make the tea!). Plus there is the added benefit of the opportunity to bump into old friends and neighbours.

They are all informal social groups, dotted around North Powys to suit people's needs, meeting for teas, coffees, lunches and occasional days out. Nobody is restricted to a particular group just because they live in the area, many attend 2 or 3 groups and a few attend everything that's going on! We help with transport as much as we can and would love more volunteer drivers who could help us out with this (hint hint!).

Currently there are two weekly lunch clubs, one in Newtown and one in Llandrinio, and a peripatetic lunch "club" that eats its way round Powys 2 or 3 times a month at various pubs and restaurants. Coffee / tea groups are held in Newtown, Guilsfield, Llansantffraid, Llanfyllin and Llanfair Caereinion monthly or twice a month.

Anyone over 50 who is feeling the need for company and wants to get out and about is welcome and we have people of all abilities and disabilities attending our groups on a regular basis. Some come every week, others we only see about once a month.

We also arrange occasional days out when people can try something a little different. One of our clients had been on a canal boat before so suggested it as a group activity. On 10 June we took to the waters of the beautiful Montgomery Canal with the Heulwen Trust (Heulwen is Welsh for sunshine). Robin, our boatman, piloted a fully accessible 70 foot narrow boat from the Trust’s base at Welshpool to Ardleen. We enjoyed a picnic lunch from a local café and a strawberry tea on our trip and everyone had a lovely day, including guide dog Quince and his owner Gwyn.

About Powys Befrienders' clients

M was widowed last year and was very lonely, with not many friends in the area - he is fit and active and has his own transport so is seen at almost all our activities. He has also met people from other clubs and groups and joins in with their activities too: "I've always got something to look forward to now, just a problem fitting it all in or deciding what to do next!"

D has complex health needs which have resulted in depression to the point she had not been out socially for over 6 years. At first very reluctant and reserved, she is now up for anything on offer, encouraging others to join in and despite her continuing health issues and poor mobility is no longer dependant on medication for depression: "Befrienders has given me back my life."

Many thanks to Jill and Lesley for updating us about this amazing project.

If you would like to become a volunteer for Powys Befrienders and could give up 2-3 hours per week please call 01597 822191 and ask for a member of the Befrienders’ team. Volunteers may do telephone befriending, visits to clients and group activities, or may just wish to transport clients to activities. Volunteers are refunded for any expenditure they incur.

If you wish to become a client of the service call the team now on 01597 822191.

You don't have to be mad to work here, but...

Carla Rosenthal recently joined the mental health team at PAVO to provide maternity cover for Angharad Griffiths. Some readers may know her from her previous role as editor of Headspace magazine for Powys Mental Health Alliance. During that time she organised some very interesting Open Days throughout the county.

Carla has thrown herself with great enthusiasm into her new role at PAVO; you can watch a video of her first Coffee Moaning, which took place in Knighton in May. She works very closely with Anne Woods, a participation colleague focusing on the Stand up! for emotional health & wellbeing project funded by Comic Relief.

With one of her many other hats on Carla is also a Mental Health Act Manager in North Powys. We spoke to Carla at her Llandrindod base to find out more.

Tell us more about your new role in the PAVO mental health team

The job title is Participation Officer and essentially it’s all about community engagement. I spend a lot of time meeting people and talking about Mental Health Services in Powys. All views, opinions and issues are collated and then given to Individual Representatives who take the grassroots voices to Board Level. I grab every opportunity to talk to service users, carers and third sector organisations to discover what is working well and what needs bringing to the attention of the health board and other mental health service providers. And I’m busy organising Coffee Moanings around Powys. (The next one is in Ystradgynlais Library on Friday 7th October 10.30 - 12.30 in the Wedding Room).

How is the new job going so far?

Four months in and I’m busier than ever! Along with supporting Individual Reps, attending Patients' Council at Bronllys Hospital, talking to people at events, and writing emails, there are lots of meetings to attend and new contacts to follow up. When I’m not travelling around Powys, I’m getting used to working in an office (a new experience for me) and I really enjoy the work I do - there’s never a dull moment.

Why should people who have been in contact with services come along to a Coffee Moaning, or a Stand Up! for emotional health & wellbeing session?

The aim of these events is for ANYONE who has interest and experience in mental health services to come along and get their voice heard. The evidence that’s gathered from these events is gold dust to the Individual Representatives who work closely with service providers such as Powys Teaching Health Board and partners on the board like the Police and the Council. It is imperative for those who plan services to hear what is needed from the people who actually use the services.

I believe you are currently looking for people to become new Individual Representatives for the Powys and National Boards. Can you tell us more?

Individual Reps are the voice of the people - it is thanks to them that service users and carers are represented. It’s an opportunity for anyone passionate about planning and developing mental health services to get involved and feel that they are helping to make a difference. Although it is a volunteer role, travel expenses are paid and there’s a fantastic training package being put together which equips Individual Reps to feel confident at strategic board level meetings. 

The partnership meetings are held every two months and there are opportunities to sit on sub-groups which are instrumental in delivering the Mental Health Strategy for Wales. Should an Individual Rep wish to attend the National Partnership Board, I assist in liaising with the Mental Health Foundation who appoint the National Reps and there are National Forums where all the Reps from across Wales get together to share information and good practice.

PAVO's mental health team with Seat 35, L:R - Jane, Anne, Jackie and Carla

What about your other role as a Mental Health Act Manager for Phoenix House Hospital in Welshpool? Tell us about that.

Mental Health Act Managers meet when an in-patient has requested an appeal hearing against their section. The title ‘Manager’ is somewhat misleading as we are all lay-people and come from a variety of backgrounds. My interest is this role came about due to having been a patient under section at a hospital in Surrey several years ago along with a brief spell in Bronllys. I can see things from the perspective of the patient as well as from a professional viewpoint.

As Managers, three of us meet before the hearing and read through the reports compiled by psychiatrists, doctors, lawyers, social workers, nurses etc. We then make a particular point of having an informal chat with the patient first, to help put them at ease and give them the opportunity to put their side across before everyone comes in. The hearing itself can be rather daunting as all professionals involved come together to give their opinion of the future care of the patient. When we have heard everything from everybody and the room has been emptied, we make a decision based on all the evidence presented.

To be held under the Mental Health Act, an individual is deemed to be at harm to self or others and needing treatment in a place of safety to prevent harm happening. If, as managers, we feel that the patient has received appropriate care and treatment and has recovered fully to become a ‘voluntary’ patient and/or even leave hospital straight away, we can lift the section. However, some people need to continue their treatment before they can be released and we then look at how they can work towards becoming a voluntary in-patient. We talk to the outside agencies such as community psychiatric nurses and social workers about what care will be put in place for when the patient leaves hospital. It’s an extremely important and responsible decision which cannot be taken lightly. Having been a patient, I understand how difficult a hospital stay can be but I’m also aware of what it’s like to be ill and needing care. Ultimately, the patient’s welfare is at the heart of our decision.

How did you get involved at Phoenix House?

When I was magazine editor of HeadSpace, I wrote a feature article on Phoenix House and one of my contacts there told me about the Managers' Panel and suggested I applied for the role. I had to complete an application form and have a formal interview before being given the position. In nearly two years, I think I’ve attended 6 hearings.

What qualities should a good MH Act Manager have and why?

As I mentioned earlier, the decisions we make have a direct and immediate impact on a patient and that responsibility is not to be taken lightly. Compassion, understanding and the ability to listen and read through a variety of evidence is essential along with a sound knowledge of the Mental Health Act and maintaining confidentiality. Along with these professional skills, a good Manager is one who genuinely listens to the patient and those working with them because whilst reports have their place, the conversations that happen during the hearing are the key to making the final decision. The Managers are aware that it is quite an emotional and stressful event for the patient and our behaviour and communication needs to reflect this during the hearing. A smile goes a long way :-)

Have you sat on an appeal panel which has discharged a patient from a section? What did it feel like?

Yes, I have and the emotions are mixed. Although seemingly a positive outcome, sometimes you get the feeling that this person is going to need support for while and although not needing a hospital setting, the willingness to engage with outside services has to be there in order for that person to thrive. I’ve worked with people who when they are in hospital they’re aiming for release, but when they’re back at home there’s nothing to aim for and they find themselves relapsing.

If during an appeal panel a patient is discharged from a section, what support has to be in place for the person?

From the moment of discharge, a patient’s status becomes ‘voluntary’ and they are free to leave. Sometimes, the section will be lifted on the proviso (agreed with patient and staff) that they stay for maybe an extra week in order for housing or a support service to be sorted out. In reality, lifting a section is only dependent on a person’s likelihood of harm to self or others so housing, support networks etc, are not part of that decision. However, our duty of care is such that we try to ensure that everyone involved is ready to provide the support as soon as possible.

What are the main challenges of the role?

This directly links with the previous question as there was a situation when if the patient was discharged, they would immediately leave the hospital into unsuitable accommodation and continue a lifestyle which had contributed to their initial ill health; however, there was no legal case to maintain the section. It’s times like this that the panel needs to consider very carefully the future of the individual. It’s all too easy to see a yo-yo effect of the same faces re-appearing in hospital but at the same time, we can’t keep someone detained in hospital just because on their release they want to go down the pub and have a beer and a fag!

Tell us about some of the most rewarding work you have done in the mental health field

On a personal level, I really enjoy going to Felindre Ward at Bronllys Hospital because some of the staff remember me from when I stayed there in 2011. It’s an amazing feeling when I can sit with patients in a Patients' Council meeting and say, I understand, I’ve been here too.

Recently I met some people at the PAVO offices who wanted to discuss a family member’s mental health. I sat across a desk telling them, “It’s ok, I’ve been in the same head-space that your family member is in and my mum has been in a similar situation to the one you’ve found yourselves in.” We all shed some tears. I signposted them to a variety of organisations, offered personal support and generally empathized. They were so reassured that just because someone is experiencing mental ill health, options don’t close down (as some people still think), instead options will open up.

And I still joke about my job: “You don’t have to be mad to work here - but if you put it on your CV, it’s a bonus”.

When you’re not working how do you enjoy spending your time?

I adore reading and devour books from the library - a day without my book time is not good! I’m also studying a Royal Horticultural Society course in horticulture and really enjoy gardening but a recent house move means most spare time is spent unpacking boxes I haven’t quite got round to yet . . . and I’ve got kids and dogs and horrible housework!

Many thanks to Carla for telling us about her various roles. If you would like to find out more about Coffee Moanings, or becoming an Individual Rep, just contact Carla by ringing 01597 822191 or emailing carla.rosenthal@pavo.org.uk