Change Step - led by veterans for veterans

Stephen Jones has recently taken on a new role with the charity Kaleidoscope. 

He works to support veterans and their families in Powys, particularly in respect of any problems associated with military service and the transition to civilian life. 

A lot has been written about the mental health of service and ex-service personnel, such as this 2013 report from the Mental Health Foundation.

We asked Stephen to tell us more about his new role and why it is needed in Powys.

You seem to have two separate but linked roles - tell us more

I have recently become the Listen In Project Co-ordinator for Change Step – this role sees me supporting families, friends and carers of veterans to aid in promoting recovery from problems associated with military service and the transition to civilian life.

I am also currently a Change Step peer mentor aiding the veterans themselves, providing a unique peer-led service.

What led you to these particular roles?

As a veteran myself, and a volunteer for Kaleidoscope (the substance misuse service in Powys), my personal journey is and can be seen to be very similar to those who I support.

Steve at Ystradgynlais Welfare Club

How do you define the term “veteran”?

A veteran is anyone who has served one day's service with the Armed Forces, whether it be as a reservist or full time member.

Tell us more about why veterans in Powys need the kind of support you offer?

It can be a very daunting process, leaving the military to joining civilian life, with there being many changes to day to day life. Sometimes it can appear to be a lonely process and there are many new challenges ahead for those leaving the forces. In particular some veterans may be experiencing Post Traumatic Stress Disorder (PTSD), or issues surrounding family life, housing, and also substance/alcohol misuse. I feel that anyone leaving the military may benefit from a quick chat with someone who has been in their shoes and understands these unique issues.

Do you know how many veterans there are in Powys? What barriers might prevent them seeking support and how do you work to overcome those?

I would imagine that there are many veterans in Powys, and we also have a large Gurkha population in the county. Powys is a very rural area, which could present as a barrier within itself. I work Powys-wide, so can travel to see those who cannot travel to see me, helping those in remote areas.

Trust is also a barrier, which is where Change Step and Listen In assist greatly as we are veterans supporting veterans.

Are there particular issues which arise in rural areas for veterans experiencing mental distress?

I think it is hard for anyone suffering mental distress, and I think the main issue is being heard, supported and knowing where to go for that support.

Steve at Dering Lines Army Camp 

Drink Drive Awareness Day

What kinds of activities are available to support veterans in Powys, and in your experience which are found to be the most appreciated and/or useful?

There are various support groups in Wales such as Combat Stress, Veterans Wales, Royal British Legion (RBL), SSAFA (Soldiers Sailors Airmen & Families Association) and many more. I am having meetings with the RBL and hope to open drop in centres in some of the major towns in Powys, where veterans can pop in for a cuppa and a chat.

What support is needed by the families of veterans who struggle to make the transition to civilian life? What is your role here? 

It can be hard for veterans to adjust, however it is also hard for the families to adjust – they may have lived apart for some time and be used to a different lifestyle, maybe in military accommodation in this country or abroad.

They will also potentially see their family member 24/7 for the first time, and also experience issues surrounding witnessing their family member suffering with PTSD. They could feel isolated and not sure where or who to turn to.

What is the most challenging aspect of the job?

I think that the main challenge with my role is making sure that I can reach all those who need our support – there are a lot of veterans and families who may need support however have not yet heard of Change Step or Listen In, something which we are working hard on changing.

Can veterans sign up to volunteer with the project? If so, what are the criteria for people who are interested, and what kind of roles are available?

Yes, and we would like to see veterans signing up as this in itself can help alleviate some issues surrounding isolation or boredom, and also help those who have not yet referred into the service. Contact us for further information.

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

I am a keen fisherman and spend a lot of my spare time at the coast. I also enjoy camping in the summer months.
 

Many thanks to Stephen for taking time out to update us about his new role. You can contact him at Kaleidoscope: 9 Castle Street, Brecon, LD3 9DD, tel: 01874 622333, mobile: 07738 320 390, or email stephen.jones@kaleidoscopeproject.org.uk

Powys Befrienders - more than a cuppa and a chat

My colleague Rachael Beech has been working for the past 3½ years as the Powys Befrienders’ Project Co-ordinator at Powys Association of Voluntary Organisations. Powys Befrienders is a lottery funded project set up to improve the independence of people aged over 50.

We caught up with Rachael at her PAVO base at Ddole Road in Llandrindod Wells to find out more about the project.

What was the original idea behind the Befrienders Project?

Very simply to support people over the age of 50 to engage back into the community; to increase their independence and confidence, and stay in their own homes as long as possible. That includes people who are experiencing mental distress, bereavement or social inclusion – it could be anyone. The project runs across the whole of Powys. People are matched with volunteers for a period of 12 months with a view to them becoming more independent ultimately.

Who can ask for a befriender?

Basically anyone who is lonely and isolated and needs help to take that first step. The befriender supports that person to reach their goals, so although a cuppa and a chat are vitally important they need to identify that they need support in particular areas of their lives to increase their independence. People can self-refer or be referred by family, statutory or voluntary organisations.

People assume loneliness and isolation are the same and their definition can be very different to the reality of the situation. You can be completely isolated and in a housing estate surrounded by a thousand people, not necessarily out in the sticks. Being lonely is down to how people cope with day to day life. Someone with a carer twice a day or a member of a club could still feel lonely because they are not having meaningful interaction. That can cause a huge amount of loneliness, especially if they are not being listened to.

Tell us about the staff and volunteers working on the project and their different roles

I manage the project across the county working with 3 outreach officers and 2 delivery partners. We promote the project, identify clients and volunteers, and then match them. This includes setting up volunteer training, support and supervision. The outreach workers also make sure that both parties understand the principles and boundaries of the project. The client will understand that they have choice and control over the goals that are identified. Staff may also identify other client needs that can be met by other statutory or voluntary organisations. Even if clients come to us who don’t meet the project criteria we will still try and point them in the right direction.

We look at the skill set and interests of a volunteer when matching them with a client although it’s not always possible to get the ideal match because of the geographical nature of Powys. Then the volunteer will go in once a week for 2 – 3 hours to support the client with their goals.

How can your project volunteers support people to strengthen their social networks?

People who have lost confidence and independence find it very difficult to take that first step to interact with other people, to start a conversation, even to walk into a room. But if they have someone there to help it makes all the difference.

We have some severely mentally distressed clients who have been ostracised in their community because of certain character traits. They feel people don’t understand them and they feel completely and utterly alone. We go in, their goals are no different to other peoples, and we help them reintegrate.

What kind of goals are set?

Using the outcome star we look at particular areas of people’s lives. The client’s goal could be learning to walk again after a hip replacement operation. Or to access shopping and social activities. Or advocacy. Someone who is not able to leave their house may want to access the internet. People get their lives back. Ultimately some may go from being clients to being volunteers, which really helps with their confidence.

Some clients have terminal illnesses – the project aims to increase independence but also wellbeing. If befriending helps a person do things in their last year of life that they have previously been unable to do it meets the criteria.

I believe the staff provide support to people with severe mental distress?

Yes, often there is no other support – not a befriending, mentoring style of support. People can become aggravated, suspicious and wary of others and it is more difficult to support them back into the community. So, either we provided support, or people might spiral into a pit of despair. In some areas of the county we are now setting up groups to help support people.

We also have two delivery partners to help us in this area – Crickhowell Volunteer Bureau (Crickhowell & District only) and Healthy Friendships (which covers North Brecknock specifically for clients with mental health needs).

What do the volunteers in particular bring to the project?

They bring lived experience, flexibility, skills and knowledge… they increase the capacity of the team. In some cases they bring long-term friendship. Some volunteers and clients have developed a relationship that does continue after the more formal arrangement has come to an end.

Volunteers currently range in age from 45 – 89, but can anyone over the age of 18 can volunteer.

If the Befrienders project did not exist, what would happen to people who contact you in need of support?

If you have lost your independence and self-esteem you are at rock bottom. If you fall ill you don’t want to pick up the phone. You have no friends, you can’t ring family 200 miles away, so you let it continue and then you might end up hospitalised. If you don’t have good mental health it reflects on physical health and vice versa.

How does the work of Befrienders fit in with that of other voluntary sector groups

We work in partnership with Mind, Disability Powys, the British Red Cross, and Age Cymru, plus all organisations who have clients of 50 or over.

Tell us some of the hardest things about working on this project

Seeing some of our clients and where they are now and thinking how easy it would have been to prevent that with a kindly neighbour or family intervention.

And sourcing volunteers. So many organisations are looking for volunteers – we don’t get many youngsters, and the majority we get have been volunteering their whole lives. We’ve lost that generation who volunteer without even thinking.

Now tell us some of the nice things about working on the project

We know we can make a difference, even if it’s absolutely tiny. We are part of a much bigger chain that is health and social care but we can help people. People who had not been out of the house for 12 months and were completely reliant on others for shopping have, a year down the line, helped set up our first independent group. That’s brilliant.

Helping people gain more skills and confidence through volunteering is really good. When we talk about beneficiaries – our clients and volunteers are all beneficiaries.

Because of the way we have worked we have been able to demonstrate categorically that Powys Befrienders has a measured effect which means we have evidence to try and make this a long-term project.

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

Looking at this project as a whole has made me think this type of care must be sustainable – we’ve got to help the community to help the community.

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

We’re 18 years into a building project, we bought a 9 foot by 9 foot stone chimney and have done all the work ourselves but we are nearly at the end! I also grow a lot of vegetables, I’ve created a whole new garden, I enjoy riding my horse, taking the dogs on long walks and popping down to Pembrokeshire where we have a caravan and swimming in the sea from February to November.

Many thanks to Rachael for telling us about Powys Befrienders. You can contact her by emailing rachael.beech@pavo.ork.uk or ringing 01597 822191.

UPDATE October 2015: Powys Befrienders is pleased to announce that it is the first befriending service in Wales to be awarded the Befriending Quality Mark. Read more here.

Music therapy - Olivia & Finding Frank

Olivia Bradbury is a musician and performer, who uses music as a therapeutic tool, who recently moved to Powys from London. She has considerable experience of working with people in mental distress. She tells us more about her past work, her play 'Finding Frank' which will be staged in Hay-on-Wye in June 2015, and her hopes for the future.

Olivia leading an orchestra

About me

I am a musician and creative facilitator working for the past few years mainly in mental health settings. This is where I am most interested in working and where I feel music is badly needed. Music workshops provide a way to connect with people who, for whatever reason, struggle with communicating their feelings. I have found that if patients and service users can find ways to speak through making music, they generally feel happier and consequently feel more motivated to take a positive, proactive approach to improving their mental health.

Olivia conducting the Crisis Choir

My workshops

My workshops provide environments in which participants feel supported to express what they want to express through the more abstract route of music/poetry/rhythm which may feel safer and more satisfying than communicating verbally. I provide starting points for participants’ ideas and frameworks in which their ideas can grow. This helps people not to  feel overwhelmed by the freedom of creativity. This careful balance of structure versus freedom is something that is tricky to get right and I have spent years trying to achieve this!

Too much freedom = overwhelmed, too much structure = stifled. I feel this is what is special about what I can offer and what is central to the nature of my workshops.

Olivia in 'Finding Frank'

My play

One of the places I have led workshops in London is Bethlem Royal Hospital. Here I met an elderly man who was suffering from severe anxiety and depression which was having a devastating effect on his communication skills, his memory, his relationships and his senses.

Over six months I saw him improve. It was the most rewarding experience of my career so far. I was so moved by what I saw in this man that I wrote a play about it -  'Finding Frank'. I had questioned whether making music did anything significant in the past, but this confirmed my belief that it most certainly did. This man was transformed! He used to get lost walking from the music room back to his ward, but not after the music work. He began communicating with his wife again and he was remembering how to play chord progressions on his guitar having initially described it to me like holding a foreign object - like an aubergine! He was cracking jokes, looking at me in the eye... I won’t say what else he achieved as I don’t want to ruin the story if you come to see the play.

When the funding cuts hit, I lost my work at Bethlem. Many who work in the arts have lost work over the last few years and it is only depriving thousands of people from a way of healing which is natural, sustainable and life enhancing. The play draws attention to this issue and my touring the piece is my way of building up awareness of the importance of music in treating mental health. 

Whilst making Finding Frank, I carried out many interviews of other people. I ran workshops with people who lived with mental health issues. I wanted to hear as many people's stories as possible - of their experiences of their minds and of their interactions with music. I learnt a great deal and felt very lucky to be able to gain this insight. I used audio clips of some of these interviews in the play (with their permission) and those that were featured came to see it and told me they were "proud to be part of a genuine piece" that talks "fearlessly and respectfully" about mental health. I felt very relieved that they approved! It was music that brought me close to all of these people. Music which is a bonding and unifying experience for any that get involved in it.

And now?

I have just moved to Powys after 11 years in London working in this field. I would love to continue my work here but need to find opportunities to do so. I know that organisations have an allowance for workshops but I know that funding is tight across the board. If you work for a hospital that would benefit from some musical activities and/or know of how I could source some funding to carry on with my work, I would love to hear from you!

For more information about what I have been up to and for contact details do have a look at my website.

Finding Frank is on at The Globe Theatre in Hay-on-Wye for three nights - 18, 19 and 20 June. Watch this YouTube video made for the production in London:

Shakespeare and mental health

Our guest author Philip Bowen runs Shakespeare Link, a highly praised theatre company specialising in the Great Bard’s works which provides a valuable community resource. It is based at the Willow Globe near Llandrindod Wells in Powys – a scaled down living version of The Globe in London.

During 2014 – 2015 Philip also took on the voluntary role of High Sheriff of Powys, and contributed hugely to the work of various voluntary sector mental health organisations. He worked with Powys Patients’ Council to open the Wellness & Recovery Room at Bronllys Hospital in the summer of 2014, presented an award to Ponthafren Association for ‘Recognition of Great & Valuable Services to the Community’ in October 2014 and spoke at the Winter 2014 Powys Mental Health Alliance Open Day in Llandrindod Wells.

As next week (April 23 to be precise) is the anniversary of the playwright’s birth (and death) we decided to catch up with Philip for his take on Shakespeare’s depiction of mental distress.

Tell us about the connection between Shakespeare and mental health

Shakespeare would have been surrounded by mental distress. There was no such thing as “care in the community” in the 17th century. The characters in his plays often go through a fracturing or breaking down followed by a reassembling at the end. This seems to go hand-in-hand with marriage which is often perceived as a healing element. There is a search for harmony within both the characters and the storyline.

In which of Shakespeare's plays do you think mental distress is most evident?

In Macbeth the image of madness or mental ill health is so accurate – it shows the troubles scored into the very inside of a person. I particularly like the quote from the Doctor when he is ministering to the troubled Lady Macbeth. He says “Therein the patient Must minister to himself.”

In the late plays – Cymbeline, Pericles, The Tempest – the characters tell their story and at the end of the play a big part of the healing is “knowing thyself;” “to thine own self be true.”

Cast members from the 2013 production of All's Well That Ends Well

Tell us about some of your own experiences playing Shakespeare's characters who are clearly mentally distressed and how that impacts on you

There is a feeling you cannot escape it. Even in the dressing room you can hear the rest of the play going on over the tannoy. I played Hamlet at the Young Vic – it was an extraordinary experience. Is it assumed madness or genuine madness? Hamlet almost negotiates himself into madness – it infects him more than he realises. Sometimes madness is a privilege.

Love is a form of madness. As Theseus states in A Midsummer Night’s Dream: “The lunatic, the lover, and the poet are of imagination all compact.”

Tell us about your work in the community and what drew you to develop that side of your work

Sue Best and I have used Shakespeare’s plays as a means of training for family therapists. It’s intriguing for us – together we look at the work of the therapists and the scenes from the plays, particularly the characters’ minds. 400 years ago a man was writing about scenarios that the therapists work with today and forming a methodology by writing a story.

The development of character through story was the great development of Shakespeare’s time. Previously characters in drama did not change that much. In Shakespeare they develop, grow and become rounded. This is particularly shown through the soliloquies.

Shakespeare belongs to us all, it is not just the property of academe or the big theatres. It is a major cornerstone of our culture. I have travelled a lot in the Third World, in West/South/East Africa and the Far East. There is a fascination with Shakespeare in these places. He flies in under the radar politically. We worked in Malawi in the 1980s when Hastings Banda was president of the one party state.

Phil working with Celf O Gwmpas

Back in the UK we took The Tempest into Maidstone prison for seven weeks. I played Prospero, and other parts were played by the prison inmates. The work had a huge impact on the inmates and the audiences, which were made up of other inmates and members of the public.

We also did work at the Home Office secure unit at Reaside in Birmingham. There was a lot of interesting discussion about control and restraint – a major theme in The Tempest. A conversation would start up – “remember that first night when we got banged up…?”

There is a recognition and a realisation amongst people that what they are acting has a real relevance within their own lives.

What about your work in Powys more recently?

Last year we did some weekly drama workshops with the patients on Felindre Ward at Bronllys Hospital and the Occupational Therapists there. They were called “Acting Up” and really well received. People said “you’re stopping us having our cigarettes!” (You can read more about the Bronllys workshops and some feedback from participants on page 2 here.)

What does the outdoor performance bring to the experience of Shakespeare?

It’s the Nature side of it – Shakespeare was a country man. London was small then. There was more wildlife in the sky. “Halloo your name to the reverberate hills,” says Viola in Twelfth Night.

At the Willow Globe we have Shakespeare based nature trails with relevant quotes from the plays on slate. It helps people understand what he’s talking about. “Where the bee sucks, there suck I,” sings Ariel in The Tempest. You can find this quote next to the bee hives.

In what way are the words and wisdom of Shakespeare a "fundamental, behavioural and spiritual resource far beyond the preserves of conventional theatre or academe"?

The plays are a fundamental resource. You can learn about human behaviour and spirituality – the connection with the outdoors. Somebody once said about Radnor – “it’s a thin place here…. Because the spirits come through.”

Many thanks to Phil for talking to us. If you'd like to find out more you can watch a YouTube video about the Willow Globe Theatre and Shakespeare Link here.

Finally receiving treatment - a personal view

I was speaking to someone in Powys recently about their experience of "going outside of the NHS towards private talking therapy... a really positive step". A positive step seemed like a good subject for a blog post, and our guest author agreed. Read on....

As an individual I have been in contact with mainstream services for over nine years, both in Powys and in other areas of the UK. Over these years, a combination of GPs, psychiatrists and occasionally other staff such as Community Psychiatric Nurses and support staff from Community Mental Health Teams have made efforts to try and alleviate the severe difficulties that go along with a diagnosis of schizophrenia.

I have found that during times of crisis access to support has been available, given that it is asked for in the right way. The problem however, for me and many others, has been with the issue of getting back to being able to live and function on a daily basis and to a level where it would be possible to believe that the goal of full and complete recovery is not only a real thing but something worth pursuing.

Although there can never be a guarantee that severe distress, mental ill health or challenges to wellbeing won’t occur either in someone who has previously had first-hand experience of these things, or in someone who hasn’t, the journey I have been on leads me to believe in one or two controversial things.

Firstly, like many others, and as supported by a growing body of evidence, I have a problem with the medical model of mental ‘illness’. The medical model is not a simple view and advanced neuroscience is often used to highlight areas of the human brain which may sometimes work differently in those who are labelled as ‘schizophrenic’ (to use but one example).

That shouldn’t detain us here, for as well as the causes for this diagnosis being perhaps still largely unknown and certainly not agreed upon amongst medics, the issue of how best to treat the condition is a big problem.

In my experience the first and last option for many practicing psychiatrists has been to prescribe powerful anti-psychotic medication, which especially since the second generation of a-typical anti-psychotics have been used, can and do alleviate or suppress ‘symptoms’ (such as psychosis) and with less pronounced side effects than the original first generation medications.

After talking to a pleasant local GP about the possibility of finding other ways to treat my own condition than medication alone, we loosely agreed that some combination of medication and talking therapy would be a sensible plan. However, in Powys the availability of talking therapy through the NHS is highly limited and the waiting list spans several years. One person I met has waited for more than 6 years already.

There are organisations such as Mid Powys Mind in Llandrindod Wells who are able to offer a free counselling service and having tried a couple of months of weekly sessions with a volunteer counsellor I found that the ability to share problems confidentially and in a non-judgemental setting brought much relief. 

More recently though, the view that a deeper and longer level of talking therapy could bring improvements to the way a person feels and functions is something which I managed to pick up from sources such as this blog and which in turn led me to explore the availability of private psychotherapy in our area.

Despite living on benefits, with advice on Employment and Support Allowance (ESA) and Personal Independence Payment (PIP) from the Citizens Advice Bureau it has finally been possible to find just enough capital to arrange for regular sessions with a practicing psychotherapist. Partly this is enabled by my practitioner’s policy of subsidising out of work patients with a slightly lower rate to those who are in work.

When making the long decision to proceed, the view of my psychiatrist was that for certain conditions which they believe to be entirely inherent or set in stone within a person’s biological constitution, there would be a risk associated with stirring up long lost memories or otherwise suppressed thoughts and feelings. I was glad of the discussion we had but, in the nicest possible way, could not disagree more strongly with any view which maintains it is not worth pursuing.

After the first couple of months of psychotherapy the tangible areas that many doctors ask about such as mood, sleep and appetite showed marked improvement and once more it seemed that the future could hold prospect and possibility rather than simply being a drab and bleak inevitability, where, to put it frankly, death would have been a welcome event.

I can’t speak highly enough of the time and space that I am lucky enough to have found within which help is given by another mind to sort through the problems and issues which we otherwise face on our own. This would include issues that an individual is aware of and also issues which it is almost impossible to be aware of by yourself.

As for ‘symptoms’, although my therapist is mindful of these and very respectful of the view of GP and psychiatrist, the outlet for me to unburden and unpack life’s major and minor worries means that as long as any possible reduction in medication is done gradually and carefully there is someone else to help keep a watch should difficulties arise.

There is still lots to do, but finally having some level of regular support has been a great relief not just to me but to remaining friends and family. As for the financing of this I would make the case to individuals, health professionals, charities and funding bodies to give increased engagement with other therapy some serious thought.

Have you had experience of talking therapies in Powys recently, whether provided by the NHS, by the voluntary sector or privately? Or are you still on the NHS waiting list? Let us know about your experiences in the comments' section below.

We need to talk about GP appointments...

Hot on the heels of the mental health debate in the Welsh Assembly Government last week, Health & Social Services Minister Mark Drakeford took the opportunity yesterday to announce an additional £650,000 of funding for psychological therapies in Wales. How that will pan out on the ground to help out with waiting lists of up to 6 months in some areas has yet to be seen, but it is, nevertheless, a good news story.…

However, another news report, with a somewhat bleaker outlook, also caught my attention this week. Dr Paul Myers, chair of the Royal College of GPs, said that “the GP profession in Wales is at risk of crumbling in just five years unless greater investment is put into the system….” He added that issues with workforce and recruitment, as well as increasing workloads for GPs, meant morale was at rock bottom and some practices were facing closure.

Dr Myers warns that unless there is an increase in NHS funding for the profession from 7.8% to 11%, general practice in Wales could fall apart in a matter of years. This is not the first news story to highlight the crisis in the Welsh GP service… ITV reported in April this year that many GPs are reaching retirement age, and recruitment is proving challenging particularly in rural areas of Wales. Retired GP Roger Burns from Pembrokeshire drew attention to some of the issues, including this most recent story, on NHS Reality.

When people experiencing mental distress for the first time (or those close to them) contact us at our Information Service, one of the first options we suggest is that they make an appointment to see their GP. But these days that process might in itself provide a barrier to recovery.

When I have needed to see a GP in the last twelve months I have rung and been told that there is a two week wait. Last week a PAVO colleague was informed that it would take a month to see the GP of her choice! So, when I know I really need to see a GP quickly I follow a regular routine, especially if it is a Friday or Monday. I make sure I am up and by the phone at 8.30am when the surgery opens. And then I start ringing. Usually the line is engaged. Everyone else is probably doing the same! We are, in effect, competing to win the very few appointments – usually cancellations – that might still be available on that day. I might press redial fifty times before I eventually get through…but whether I will be lucky enough to get an appointment that day is another matter…

I can’t help wondering to myself… but what if the other people who are trying to get through to the surgery switchboard have a really serious problem they need to talk to their GP about… maybe they are older… or have a young child… who decides who should be seen first? No one! It is a complete lottery!

When we do get an appointment there is more waiting involved… This business of looking after our health and wellbeing is truly a waiting game.  Last time I sat for 45 minutes after the time my appointment was scheduled, in a GP surgery absolutely bursting at the seams, before I saw a GP. And once I’m in there for my snatched five minute consulation I almost feel guilty for taking time out of the busy GP’s life… S/he has to see about 59 other patients that day after all…

And if you are emotionally distressed, where will just five minutes with a GP get you? Especially if you are told that the waiting time for psychological therapies could be many, many months?

So, really I’m not at all surprised to read Dr Myers’ comments… or to note that Dr Charlotte Jones, chair of the British Medical Association’s Welsh General Practitioners Committee, warned last month that general practice in Wales was in “intensive care”.

According to the Royal College of GPs - due to the sheer volume of GP workloads, in this year alone, patients will have to wait longer than a week to see their GP on at least 27 million occasions.

In another online article this week, it was reported that nurses at the Royal College of Nurses’ annual conference suggested that: "patients should be charged up to £10 a time to see their GP to deter "time-wasters" and those with minor symptoms". (On the same webpage is a link to a video called “Self diagnose illness with new apps”…..)

Would you be willing to pay £10 to see a GP if it cut down on appointment waiting times?

There is a petition – calling to save general practice Wales – on the Royal College of GPs’ website here.

Crisis cards or a buddy – maybe an app will do?

In North Powys members of the mental health charity Ponthafren Association can apply for a crisis card. Traditionally such a card is used to give someone chance to say how they wish to be treated in a mental health emergency when they may have difficulty in making their wishes known. The card could contain a list of useful organisations that people could contact in a crisis, and also details of someone close to the person who should be contacted to support them through the crisis.

I was interested to know if other organisations are providing cards – we are occasionally asked this question by people emailing or ringing our Information Service, and so set about researching the topic online…

What soon became clear was that most of the pages in my “crisis card” search threw up historical documents. There was much of interest to be read about the original development of the crisis card, such as the fact that: the first card to be used in this country was developed by the UK-based International Self Advocacy Alliance and jointly launched with Survivors Speak Out in 1989.

Articles going back to the nineties, when the initiative was first being developed, included detailed analysis of potential content of crisis cards. Some discussion papers seemed to imply that a paper document the size of a book rather than a simple credit style card might be required, as described in this article in The Psychiatric Bulletin in 1998.

But times have moved on… and my ongoing search then revealed that paper copies of cards are being superseded in some areas of Britain by mobile phone apps providing a similar function. In Cambridgeshire the SUN (Service User Network) has developed and promoted its own crisis card mobile phone app, which was launched with a flash mob event in Cambridge city centre in December 2013.  According to the SUN Network website: "The crisis card mobile phone app provides a one-button-press ‘call for help’, so you can reach out to your support network without having to face a phone call".

The app is free, and whilst it has been developed and designed in Cambridgeshire it is available for use by anyone in the UK.

Kate Brown, physiotherapy lead for inpatient mental health services at Cambridgeshire and Peterborough Foundation Trust, said: “The app is designed to help mental health service users in times of crisis but also as a way of monitoring their mental and physical health. We’ve demonstrated it to our ward staff and the staff have shown it to patients so they can use it after they have been discharged. It’s a new way of people getting help and it’s been welcomed by our staff and service-users.”

And mobile phone apps are not only being used to replace crisis cards but to support people experiencing mental distress in all kinds of situations. The apps are often developed by National Health Service trusts in consultation with people in contact with their services. A brief search highlighted the following readily available apps:

• My Journey – developed by Surrey and Borders Partnership NHS Trust – by staff and people using the Early Intervention in Psychosis Service.
• QDoc – developed by the Black Country Partnership NHS Trust – “to support mental health service users manage their consultations.”
• Buddy – developed by South London & Maudsley NHS Trust - clients “use text messaging to keep a daily diary of what they are doing and how they are feeling, helping to spot and reinforce positive behaviours.”

And the NHS has, on its own website, a new library page dedicated purely to mental health apps, which have “been reviewed by clinicians to ensure that they are safe and trusted.” In a digital world where it can sometimes feel that we are being bombarded by apps we can at least feel somewhat reassured that someone has checked out the app for us in advance, perhaps? (Some of the apps are free, and others have to be paid for).

What do you think about mobile phone apps aimed at supporting people in mental health crisis or emotional distress? Have you tried one? If so, have you found one you like? If you haven’t tried one, would you like to? What about the range of apps available... do they cover approaches that interest you, or are there still gaps in provision? 

Would you rather have a real life buddy, a Buddy app, or both? Let us know what you think in the comments box below.

It's the inside that matters

by Jane Cooke, DIY Futures Project Manager

That’s a truth that many of us recognise – it’s not how we look but how we feel, what we feel strongly about, what hurts or has hurt us, what has shaped us, what brings us joy that matters. That is one of the essential messages of our beautiful book. We were struggling to find a title, going over many suggestions, some of us liked one, some another, but when one of the contributors to the book said, “After all it’s the inside that matters” we all realised immediately that this was the title we had been searching for.

The book launch at the DIY Futures Celebration October 2013

This is a book of thirteen accounts of life, whatever aspect of life that the contributor wanted to talk about.

We also ran, through Celf o Gwmpas, a series of ‘visual poetry’ workshops. Through these workshops, led by Sean Burn, an outsider artist with a growing international reputation, we achieved some moving work which, through layered and intriguing images reflects the experiences and feelings of the artist.

Jane promotes the book at the Powys Mental Health Alliance AGM 

How to get free copies of the book!

Thanks to the Big Lottery Fund, the books can be freely given away – but they do have a job to do – we want the books to help us challenge the stigma and discrimination that is so often faced by people who receive mental health services, willingly or not, and/or who experience emotional distress. Sometimes those negative and disturbing ideas about dangerousness, unpredictability, strangeness or other views are held internally about ourselves – none of us lives in a bubble isolated from media comments and sensationalised reporting. The stories show how life is, what has been experienced and endured, how circumstances and life affect us.

You or your group can receive free copies of the book – provided that you use it to help challenge the stigma experienced by people who use mental health services or who experience emotional distress. One way that you could do that is to invite people to meet together, look through the book and individually choose one story to read. And then discuss the stories and how you felt reading them. Then talk about what you might do as individuals or as a group to help challenge stigma.

Get in touch to say that you are interested and we will send you some books and some paperwork – nothing too demanding – we just need to know numbers of people taking part, some comments, quotes, reactions and any actions people or groups will be taking as a result. Actions can vary from talking to family and friends to thinking about the meaning and impact of using words like ‘nutter’ or ‘mental’, deciding to follow relevant blogs or twitter accounts, asking if where you work is a ‘mindful employer’, getting some leaflets for your workplace or club, church group etc. You might want to suggest getting a speaker to come and talk to your group or club, or seeing if, for example, your sporting association is tackling stigma in mental health. (Read this BBC blog about mental health and sport). There is plenty you can do and we can help with suggestions.

Contact us by emailing: jane.cooke@pavo.org.uk or pamhinfo@pavo.org.uk

Or by ringing 01597 822191 or 01686 628300 or...  leave a comment below. 

You can watch a video of the book launch here, and a video of Marion Aslan speaking at the same event here.

Unconventional Wisdom: Organic Reasons for Depressive Symptoms

As many readers will know by now, I think we need to be challenging and debating the logic that accepts “mental illness” as a valid concept.  I am concerned that our mainstream acceptance of the idea of “mental illness”, within our health and social care services, our mental health laws and our society, leads us to act in ways that, although well intentioned, cause bad consequences.  Ultimately this may result in more harm than good for people affected by the idea that experiences and actions can be diagnosed as "symptoms" of “mental illness”. 

Last Thursday, in our “Shaping Services Together” Conference, I think that we succeeded in furthering this debate in Powys.  With the help of Jacqui Dillon and Jo Mussen the morning started with us being asked to consider the following question:  

“Should mental health services be shaped by the question what happened to you rather than what’s wrong with you?” 

In this vein, I want to continue the theme from my last blog about organic reasons for psychosis by exploring organic reasons for depressive symptoms, again to try and make sure that:

In our drive to suggest that people are asked "what has happened to you" rather than “what is wrong with you”, let's not miss the question “is there anything physically/organically wrong with you?” 

Map of Medicine, which is the NHS system that claims to provide access to comprehensive, evidence-based guidance and clinical decision support, lists the following as typical symptoms of depression:

• an unusually sad mood that does not go away 
• loss of enjoyment and interest in activities that used to be enjoyable 
• tiredness and lack of energy 
• crying spells, withdrawal from others, neglect of responsibilities, loss of interest in personal appearance, loss of motivation 
• chronic fatigue, lack of energy, sleeping too much or too little, overeating or loss of appetite, constipation, weight loss or gain, irregular menstrual cycle, loss of sexual desire, unexplained aches and pains

A diagnosis of depression by a medical professional (in the case of depression, most often made by GPs) will be based on the number of these symptoms that you are experiencing/exhibiting, and whether you have experienced the symptoms for at least two weeks.

What are the known organic causes of these typical depressive symptoms?

Firstly let me try and clarify that by organic causes of depression I mean where the depressive symptoms are the direct result of an organic cause.  I do not include conditions where it is the actual coping with the organic condition, such as  cancer, dementia, heart disease, that results in us experiencing emotional stress and natural feelings of hopelessness, despair, loss of enjoyment and tiredness, feelings that could be diagnosed as “depression”.  Instead I am trying to find out about organic/biological conditions that cause a change in our physiological functioning that lead to the symptoms of depression that I  listed above. 

The Clinical Knowledge Summary from the National Institute for Health and Social Care Excellence (NICE) lists the following as organic reasons for depressive symptoms:

• Carbon monoxide poisoning   
• hyperthyroidism and hypothyroidism – state in which the thyroid gland production of thyroid hormones, thyroxine and triiodothyronine, is abnormal
• Rare side effects of prescription medication, such as: 
• antihypertensives used to treat high blood pressure 
• lipid-soluble beta used to treat a number of conditions including heart disease and high blood pressure 
• central nervous system depressants used to slow down brain activity prescribed for conditions including insomnia, muscle tension, pain, epliespy, anxiety and mood “disorders” 
• Opioid analgesics, generally uised for pain management 
• Isotretinoin primarily used for acne

However,as with my blog on organic reasons for psychosis, other organic reasons for depressive symptoms are to be found elsewhere on NHS sites.  These include:

• Cushing's syndrome, caused by very high levels of a hormone called cortisol 
• Hypercalcemia caused by abnormal levels of serum calcium concentration.  Also a complication of Pagets Disease 
• Hyponatremia where sodium ion concentration in the plasma is lower than normal 
• Diabetes when the pancreas does not produce enough insulin to maintain a normal blood glucose level, or your body is unable to use the insulin that is produced 
• Neurologic disordera such as Epilespy, Stroke, subdural hematoma, multiple sclerosis, brain tumors (especially frontal), Parkinson's disease, Huntington's disease, epilepsy, syphilis, dementias 
• Nutritional disorder such as Vitamin B12 deficiency, pellagra caused by a chronic lack of niacin (vitamin B3) 
• Other disorders such as viral infection and carcinoma

How do these organic/biological causes result in us experiencing depressive symptoms?

In many different ways it seems.  Some of the physical conditions listed above result in an imbalance of the hormones that we need to keep our bodily process working efficiently (e.g. thyroid hormones, insulin, cortisol).  When our hormone production or our ability to effectively use these hormones goes wrong, then a direct result can be symptoms of low mood, lack of enjoyment, tiredness, mood swings and lethargy.

Some of the conditions listed above cause damage to our brains in the areas that are know affect our mood so again the effect of this damage results directly in depressive symptoms. 

When someone experiencing depressive symptoms presents to a health care professional, what investigations will occur to determine whether there is an organic cause?

So back to the NHS Map of Medicine then.  It states that people presenting to health professionals with suspected depression may, “depending on the judgment of the clinical professional of the nature of their presentations”, expect to have medical investigations done to rule out an organic cause for their depressive symptoms.  The investigations are listed on this site but they include biochemistry tests, such as blood glucose, liver function tests, thyroid function tests and hematology tests such as full blood count.

Can depressive symptoms be misdiagnosed as a "mental illness" in this case “depression” when they are actually caused by organic/physical conditions? 

Unfortunately it seems that the answer to this is yes, again as it was with psychotic symptoms.  It is not difficult to find examples of organic problems being misdiagnosed as “depression” from across the academic world, the press and from people’s stories.    So examples where someone is diagnosed with "depression" and treated for this first, rather than the organic reason being found and appropriate treatment for the biological condition being given (e.g. removal of brain tumor, treatment for Hyperthyroidism).  

How often can the psychological symptoms we experience actually be explained by organic/physical/medical reasons? 

There is of course a lot of information about this on the internet but I really am not sure we know the definite answer to this.  It seems that a conservative estimate that about 10% of all psychological symptoms may be due to medical reasons, as this study suggests.   However the results of one study suggest that about 50% of individuals with a “mental illness” diagnosis actually have general medical conditions that are largely undiagnosed that may cause or exacerbate psychiatric symptoms.

So over to you again. Can you help me answer these questions?  Are they questions worth asking?  Tell me what you think ...

• Should mental health services be shaped by the question what happened to you rather than what’s wrong with you?
• In our drive to ensure that people are asked "what has happened to you" rather than “what is wrong with you”, lets not miss the question “is there anything physically/organically wrong with you”.
• What are the known organic causes of typical depressive symptoms and how do these organic causes make us feel “depressed”?
• When someone experiencing depressive symptoms presents to a health care professional, what investigations will occur to determine whether there is an organic cause?
• Can depressive symptoms be misdiagnosed as a "mental illness" in this case “depression” when they are actually caused by organic/physical conditions?
• How often can the psychological symptoms we experience actually be explained by organic/physical/medical reasons?

Unconventional Wisdom: Organic Reasons for Psychosis – Do we need to make sure that we don’t miss the question “is there anything physically/organically wrong with you”?

The Madness Of King George

I am on a bit of a mission at the moment trying to encourage people across Powys to explore whether the important question we need to be asking is:  

“Should mental health services be shaped by the question what happened to you rather than what’s wrong with you?”

In May 2012, Eleanor Longden spoke at an event we ran and raised this question. In a conference here in 2013 Jacqui Dillon helped us further this debate and you can here her speak here.  In April 2014 we ran a conference called Finding Meaning in "Psychosis" when again we were able to consider this question with the help of Lucy Johnstone, Sami Timimi and Eleanor Londgen

We are by no means the only ones debating this.  In fact, it seems that this question is resonating with may others and fuelling a debate across the world around the validity of mental illness diagnosis.  You can access some of this debate on twitter, my account is @powysmh.  

Whilst I for one am very interested in the impact that asking this question may have, I also wish to raise the need for caution.

In our drive to ensure that people are asked "what has happened to you" within health services, do we need to make sure that we don't miss the question “is there anything physically/organically wrong with you”? 

Psychotic symptoms (e.g. hallucinations, delusions, disturbed and confused thoughts), for instance, can be caused by illnesses, diseases and physical health conditions.  On the NHS Choices website there is a page that lists the medical conditions that have been known to trigger psychotic episodes.  These include Malaria, Syphilis, Azheimer's disease, Hypoglycaemia, Lupus, brain tumour and Lyme disease. But, this does not seem to be a complete list. I have also come across other organic causes that were not listed there.  B12 Deficiency, Porphyria, Wilson’s Disease, cerebrovascular disease can be found elsewhere on their site citing psychosis as one of the symptoms of these conditions . 

These organic/physical causes produce symptoms of psychosis for a number of reasons, for example abnormal enzyme production, brain damage, tumours, chemical element poisoning, abnormal hormone action, abnormal blood supply to the brain and vitamin deficiencies.  There are physical investigations and tests that can be done to determine whether someone is suffering from these conditions.
 
When someone first seeks help, or finds “help” thrust upon them, for psychotic symptoms, what investigations will occur to determine whether there is a organic/physical/biological cause?  

Diagnosed with syphillis

For adults, the Map Of Medicine Pathway based on National Institute for Health and Care Excellence (NICE) medical guidelines states that if someone presents to them with suspected schizophrenia, then doctors need to determine whether or not there are any physical/organic explanations for their symptoms.  

Worryingly, I think, the recently published (Jan 13) NICE guidelines for psychosis and schizophrenia in children and young people, does not seem to indicate that psychotic symptoms can have organic causes.  I could not find anything in the guidance, the supporting care pathway or the information for the public that indicated that psychotic symptoms could have organic causes.  I have to admit that I might be missing something, the guidance is very long, so I will be contacting NICE to ask.

Can psychotic symptoms be misdiagnosed as "mental illness" when they are actually caused by organic/physical conditions? 

Unfortunately it seems the answer to this is yes.  It is not difficult to find examples of misdiagnosis, where psychotic symptoms that have an organic/physical/medical explanation have led to people being given a mental illness diagnosis.  There has also been scientific work  that highlights where organic disease has been incorrectly diagnosed as mental illness (e.g. schizophrenia).     

How often can psychotic symptoms be attributed to organic/physical/medical explanation? 

I am not sure that we really have the information that would enable us to get to a definitive answer, I have found figures that range widely, from 5% through to 30%.   

So over to you. Can you help me answer these questions?  Are they questions worth asking?  Tell me what you think ... 

• Should mental health services be shaped by the question what happened to you rather than what’s wrong with you?
• In our drive to ensure that people are asked "what has happened to you" within health services, do we need to make sure that we don't miss the question “is there anything physically/organically wrong with you”?
• When someone first seeks help, or finds “help” thrust upon them, for psychotic symptoms, what investigations will occur to determine whether there is a organic/physical/biological cause?
• Can psychotic symptoms be misdiagnosed as "mental illness" when they are actually caused by organic/physical conditions?
• How often can psychotic symptoms be attributed to organic/physical/medical explanations?