Citizen Power, Active Participation

Blog by Freda Lacey, Powys Association of Voluntary Organisations (PAVO)

The Person in the Arena – Theodore Roosevelt    

"It is not the critic who counts; not the person who points out how the strong …stumbles, or where the doer of deeds could have done them better. The credit belongs to the person who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends themselves in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if they fail, at least fails while daring greatly, so that their place shall never be with those cold and timid souls who neither know victory nor defeat."



24th October 2014.  Left to right, back row;

Rhydian Parry, Neil Saunders, Kate Van Den Ende,

Steve Hails, Liz Hails, Phil Pashley, Meriel Richards,

Phil Moisson.  Front: Freda Lacey, Lotte McGregor,

Ali Lloyd-Jones, Michelle Willingham, Jill Dibling

On Thursday,  24th October, I gave the above quote, a personal favourite of mine (one which has boosted me many times during some of my darker days) to a group of twelve enthusiastic, devoted citizens of Powys, who came together for the day with me to discuss active participation on local and national Mental Health Partnership Boards. 

 

 

 

 

The Road Trip

This meeting was the culmination of a long road trip across Powys over the last few months, engaging with people in local groups, teams, towns and localities.  I gleefully sent out some photos to my family of my journey to work that first day of travel, captioned, “my road to work this morning”.  I feel incredibly lucky to live in a county and drive roads which take me to views like this in the work I do. 

My mission? 
To inform and encourage people to participate at our annual Stronger in Partnership conference, this year entitled, “Shaping Services Together”.  People would get to meet with Jacqui Dillon, a well known activist and public speaker on the de-medicalisation of mental health distress and chair of the “Hearing Voices Network”, actively participate in speaking up about the impact of the UK Welfare Reform (workshop video here) and meet with key decision makers locally and nationally to report on personal experiences (watch out for a subsequent Blog on this topic!). 


Welshpool Outreach - Ponthafren

They would also get to speak directly with members of the relatively new National Partnership Board driving the “Together for Mental Health” strategy and delivery plans across Wales.  People would also learn more about how to actively engage and participate in shaping mental health services (you can access their talk here), locally and through a newly forming National Forum for citizens in contact with mental health services across Wales.  


Llanidloes Outreach - Ponthafren

I combined visits to local mental health voluntary services/groups and statutory mental health staff/teams closely in contact with people who have been diagnosed with "mental illness". 

My journey took me to places such as Machynlleth and visits with Mind Aberystwyth’s “UsMach” and a local counseling services called “The Listening Point”.  To Llanidloes’ Mental Health Outreach Group, Welshpool Mental Health Resource Centre, both managed by Ponthafren Association.  
 

Older People's team, South Powys

Newtown’s Mental Health Resource Centre (managed by Ponthafren Association), Builth Wells Mental Health Outreach Group and Llandrindod Wells Resource Centre, through Mid Powys Mind, Brecon and District Mind’s (note new name), Mental Health Resource Centre.   Bryntirion’s multi-disciplinary team of social workers, community psychiatric nurses and team leaders in Welshpool, multi-disciplinary staff team at Ty Illtyd in Brecon, the older people’s multi-disciplinary staff team gathered at Bronllys Hospital and the multi-disciplinary staff team at The Larches in Ystradgynlais.

This event was also going to uniquely focus on “across all ages” and we actively worked with the Participation Team working with the Powys Youth Forum and Tros Gynnal, who provide Children’s Advocacy, to get their involvement.  Several young people came, with the support of these two local organisations and they worked with Theatr Clwyd on a workshop to put across their points/issues to the audience.  There was also quite a bit of audience participation as you can see in the picture here and below.

We had over 120 people registered for the event here in Powys which happened on September 19th and the momentum for people to get involved in shaping mental health services, both locally and nationally, has continued since then with great interest.  It feels as if a great shift is happening with people really wanting to become more actively involved, raising their voice, campaigning for the rights of individuals (and themselves) to be heard.  People are passionately wanting to help change the way services are delivered so that they have the services they need, when they need them.  It is interesting that this is strongly aligned with the Welsh Government’s drive to involve more citizens in public consultations, engagement and participation at all levels.  For a list of the most recent opportunities to get involved, please visit this page on our website.

This all brings us to last Thursday’s day at Gregynog Hall, where originally, fifteen people had put themselves forward as interested in coming together to discuss active participation and representation on the Powys local Mental Health Planning and Development Partnership and the National Forum. Unfortunately, three people were unable to attend on the day due to unforeseen reasons. 

The local partnership board is a requirement, as part of the strategy for Mental Health across Wales, and each of the seven health boards in Wales need to create such a partnership.  They are also required to have people in contact with services and those close to them as active members on these partnership boards.  There are no minimum or maximum numbers, but most Boards have over four people as active members.  In Powys, we have three people who can participate on the partnership at any one meeting.

There were six people who organically fell out of the day’s selection process, but three others who really wished to participate, but were unsure of their abilities and perhaps lacking in some confidence.  The group, as a whole, really wished to encourage and support these three people to be actively involved and so they wished me to see whether the three people participating on the local partnership could be pulled from a pool of nine people.  The remaining three people all wished to be very actively involved in supporting the local and national engagement process.  Nine people from Powys will actively be part of the National Forum that is forming and this will consist of over 50 people from across Wales.

Jo Mussen (right) Vice Chair Powys teaching Health Board & Jackie Newey, PAVO

The nine people are a good mixture of people who have varied and diverse experiences.

It will be one of the widest, most diverse groups of people to ever come together, with one common purpose.  This is to ensure that those in contact with or close to people who have experience of mental health services in Wales are valued as equals in shaping mental health services for the future, that they are consulted, valued, actively involved through meaningful dialogue, ensuring that this is not tokenistic.  This Forum will also choose the four people who will participate on the National Partnership Board.  Importantly, communication to and from the National Partnership Board on issues affecting people and progress on key areas of interest in terms of service development and action, needs to be whole-heartedly carried through this Forum, by this Forum to local networks, groups and citizens represented from communities across Wales.  In this way, a strong, inter-dependent link will exist between local citizenship and Welsh Government, in relation to mental health and well-being.

Community Mental Health Team, Brecon

The ongoing challenge remains how we actively engage, communicate and dialogue with the silent majority of people, whose voice may not yet have been heard and indeed, who do not wish to participate via membership of a forum or board, but who do want to actively contribute and be heard.  Further development of local groups, local mechanisms for ensuring active participation is facilitated and helping forge meaningful connections are next steps for the group who met at Gregynog, as is utilising the widest and most innovative means possible to engage with people. 

Along with supporting this group, my role requires me to be mindful of linking opportunities for involvement in services with people with particular interests or experiences.  Most recent examples of this include: linking an individual in Newtown with Department of Health, Expert Reference Group meetings in London, reviewing the Mental Health Code of Practice and we’ll ensure that we are involved when/if the Welsh Code of Practice is also reviewed, ensuring individuals who have experience of being detained by the police (in relation to mental health distress) are linked in with a two year research project headed by the University of Bangor into Police practice, linking people with the group overseeing the implementation of the Mental Health Measure (Act) across Wales and seeking to involve people in the formation of the Powys Psychological Therapies Management Committee.

Finally, I shared with the “Twelve” a poem which means a great deal to me.  It is called “To Risk” and you can view it here on our website.  It felt right to hand people this poem before they attend the first meeting of the Powys Mental Health Planning and Development Partnership in December and the National Forum in November.  It may help if you’ve never gotten involved in participating before. 

 
So, if you wish to join in, get actively involved and have particular interests or experience in different aspects of services that makes you think you can make a difference for others and/or for yourself, please email me at Freda.Lacey@pavo.org.uk or ring me on 01597 822191 for further information.

By Freda Lacey

Open Dialogue in Nottingham

“The name Open Dialogue was first used in 1995 to describe two key features of the approach: the use of open family/network meetings and a set of principles for organising the whole psychiatric system that made dialogue possible.” Nottingham Open Dialogue group, September 2013

Back in early September I wrote about the conference I went to in Nottingham – Psychiatry beyond the current paradigm. One of the workshops at the event focussed on an innovative approach to mental distress and crisis work called Open Dialogue, and I promised to write more about it in a future post – so here goes.

Before going to Nottingham I had read briefly about the approach in Robert Whitaker’s book – Anatomy of an Epidemic. “Western Lapland in Finland has adopted a form of care for its psychotic patients that has produced astonishingly good long-term outcomes.” You can read more on Robert’s website here. Robert has subsequently referred to the Open Dialogue approach again in blogs and other writings, quoting it as a clear mandate for change. 

So, what happened at Nottingham? Well, first of all, hour one of the session was absolutely Powerpoint free. That was refreshing in itself. A group of people have been meeting informally in the city to look at what is happening in Finland, and several of them had agreed to lead this workshop. They introduced themselves, and explained that they were considering how Open Dialogue could be put into practice locally. They educate themselves at meetings, having a mailing list of about a hundred, and a core 16 – 18 people attend the meetings regularly. Originally they began as people with “lived experience”, but the group has now expanded to include some professionals “which has changed the dynamics”. 

What followed for the first half of the workshop was a dramatisation and replaying of an actual Open Dialogue meeting which had taken place in Finland some years ago. This was extremely powerful, as for those of us attending it really felt as if we were watching and listening to an actual meeting. The professionals involved listened for a long time without saying anything at all to both the person in distress and the close family members. Eventually, when they did speak, they shared their views amongst themselves and allowed the person and his family to listen in. Further dialogue between the whole group then followed, and throughout the session the sense of absolute crisis seemed to gradually ebb away through use of this continued dialogue. There is no video of the workshop, but if you want a feel read “The Story of Pekka and Maija” on pages 411- 414 of Jaakko Seikkula and Mary E. Olson’s article about the approach.

The second half of the Nottingham workshop was used to explore the Open Dialogue approach in more detail and for this a presentation was used, but again group members took turns to explore the different areas. Some of the key points for me were:

• Psychosis is a temporary, radical disengagement from shared communication practices.
• The need to create safety/trust to allow people to express deep fears.
• Stay with the situation as it is, and allow it to develop (without using specific “tools”).
• The reflection that the team does is in the family meeting.
• Results have been better for those who took no neuroleptic medication or had it at a later point.
• Is the medication for the sake of the individual or for those around them, including the team?

The group reported an 85% recovery rate for psychosis using this approach. So that, rather than a growing number of people going on from psychosis to be labelled as “schizophrenic”, there are actually very few people with this diagnosis in this area of Finland. It is actually disappearing.

A film-maker called Daniel Mackler has produced a number of videos on Open Dialogue, some of which are available on the web. I particularly enjoyed his interview of Jaakko Seikkula, Professor of Psychotherapy in Finland (author of the article quoted above), in which Jaakko states: “All of us could have psychotic problems! Psychosis is an answer to a very difficult life situation.” 

I was truly impressed by what the Nottingham group had found out so far, and how they conveyed their learning at the workshop. You can find further links to documents about Open Dialogue on our new website page here – and thank you to Nottingham Open Dialogue for sending us some of these. What can we do in Powys to bring this innovative approach a little closer to us…? Do you have ideas about this? Let us know by commenting below.

Meanwhile, to finish….  Monica Cassani, “a social worker and … a person whose life was severely ruptured by psychiatric drugs”, created the BeyondMeds blog and posts about the mental health system in the United States, and alternative approaches such as Open Dialogue. This week in the UK the BBC reported on the need for more psychiatric beds – in England…. I’m inclined to agree with Monica’s view that maybe, if the Open Dialogue approach was widely adopted just as has happened in Western Finland, then the psychiatric hospital beds (wherever they are in the world) would lie empty…

Unconventional Wisdom: Exploring The Language We Use Workshop and Poem

Philip, Eleanor and Owen working on the poem

Yesterday, 9th October 2013,  I took part in the Powys DIY Futures Celebration Event in Llandrindod Wells.  I for one really enjoyed the event and the chance to talk to so many people.

I ran a workshop called “Exploring The Language We Use – Mental Health”.  You can read more about this below.  

The following poem, being worked on in this picture, was inspired by the workshop and written by the some of those who took part in it.

The Poem By Philip Moisson, Eleanor Barrow, Freda Lacey, Jill Dibling and Owen (Wordsmith for the Day)  

Der dar ... The Poem

More about the workshop: “Exploring The Language We Use – Mental Health”

Us all ... in action ...

The aim of the workshop was to discuss, explore and raise questions around the mainstream language that we use in the field of mental health.   It was not aiming to search for the right words or the words we think we should be using.  

It was not aiming to judge the words we do use.  Instead the aim of the workshop was just to look more closely at the language we do use and hear often.
 


We did this by taking 4 common sentences and asking two participant actors to speak the words to each other.  

One actor was identified as a psychiatrist, another her patient.  The rest of us bore witness to the sentences being spoken.

We were then asked to explore the simple sentences used by breaking the words that were spoken down into three areas:

• The actual words spoken – explicit meaning
• The context of the words spoken – identifying power, authority, emotions
• The assumptions underpinning the words spoken - the unsaid, the unspoken, the unchallenged facts

12 people took part.  The following pairs of sentences were discussed:

You are a service user.  I am a service user

You have a chemical imbalance of the brain.  I have a chemical imbalance of the brain

I am manic.  You are manic.

I am a carer.  You are a carer.

Feedback from the event!

I felt privileged to work with people who were willing to be so open, enthusiastic, thoughtful and supportive. 

I would like to thank those that took part for their time, their ideas, their kindness and their laughter.   

Laura G

Smoking and snacking? Saving lives, or life-saving?

by Freda Lacey

The real voyage of discovery consists not in seeking new landscapes, 

but in having new eyes.     Marcel Proust

My life turned for me when I fully accepted what this saying meant many years ago now and I have been reminded of it again, through a recent meeting of Powys Patients’ Council, Felindre Ward, Bronllys Hospital.

I facilitate Powys Patients’ Council, a project which promotes listening to patients’ collective “voice”, in this case, whilst people are staying in the acute mental health in-patient unit at Bronllys. Some volunteers and I visit people once a month and listen to their concerns or issues. We then feed these back, anonymously, to ward management for resolution. If necessary, we also escalate issues to senior health board staff if we do not achieve resolution through ward management. Powys Patients’ Council has been running in Powys since 1989. I took over facilitating the project six months ago. Several volunteers work with me and they all have experiences of being in hospital themselves. 

Last week at Patients’ Council, we had an unusual meeting in that six people joined us. Collectively, there were two main issues they all raised, but another one, has been rumbling for some time now. 

When I left the ward last week, I realised I was feeling all sorts of feelings - anger, sadness, compassion, delight, amazement, warmth, empathy. I have also been feeling something else that I hadn’t acknowledged until just now, writing this, and it is a deep sense of connection. These feelings have led me to want to write about the issues raised during our ward visit and a question I have, is “Smoking and Snacking, life saving?" 

I saw a statistic recently that indicated 47% of tobacco in the UK is consumed or bought by people who have been diagnosed with having a mental illness. In researching a bit more about this, there are a great number of articles on the web that could be viewed as supporting this statistic. Most of the documents describe, in some detail, what is bad about smoking. If you type in just that “why is smoking bad for you”, you’ll get approximately 92,400,000 responses. We all know the reasons smoking is not beneficial for people’s physical health, I don’t need to add one more to this.
Instead, I want to ask a different question. How many responses would come back if I asked “Does smoking save lives”? Interestingly, of the 6,580,000 responses that came back, most on the first page were related to “stop smoking and save lives”. 

You see, most of the people I come into contact with, on a weekly basis, if they are connected with mental health services, smoke. I have spent most of my adulthood finding smoking very difficult because of the links between smoking and my Mother’s death just before I turned 12. 

However, I find myself questioning my relationship and judgement of smoking and this has certainly increased since the recent Patients’ Council. I found myself asking why? 

Why do most people I’m in contact with as part of my role, smoke? I didn’t feel comfortable about asking this question of people but I did find this article thought provoking, particularly the list of positive intentions the author relates to smoking. 

I wonder if some of these “positive intentions” are why people, especially if they are involuntarily placed in acute mental health in-patient units, not only depend on smoking, but actually need to. I wonder what would happen if people weren’t allowed to smoke, what affect this may have on their state of well-being? I wonder if people are trying the best they can to exercise some of their own control over their feelings and emotions and are in fact, choosing to self-medicate, especially if they feel they are not free to exercise control over most other aspects of their stay in hospital. I wonder if, in some paradoxical way, the fact that people are given medication to suppress or regulate severe emotions, if choosing to smoke is, in fact, trying to do the very same thing as the medication people are prescribed. The only difference perhaps, is free will?

The ban of smoking in public places has had an effect on patients in hospital settings. Indeed, a full ban on health sites in Cardiff and the Vale of Glamorgan, as of 3rd September, 2013, is being implemented with the recruitment of a “smoking enforcement officer”.

I’m wondering if any thought is being given to patients’ choice in this enforcement, especially people who are obliged to stay in hospitals and/or in-patient units, for long periods of time. Will they be forced to stop smoking altogether, or given no choice? I came across this article on a patient in Scotland and some more in-depth reasoning about why smoking should not be enforced here. 

The next issue raised by patients is intrinsically linked with the constancy or need to smoke whilst staying on the ward. One of the patients spoke very poignantly of how grateful he’d been last week, when two medical students had taken time to play a game of scrabble with him. Of the six people who came to speak with us last week during Patients’ Council, all of them spoke of the need for more activities on the ward to keep them occupied. The man went on to say that because of this, he was focusing more on his issues, he started to feel worse and then he found he was smoking more. Another woman told us she hadn't smoked before arriving into hospital, but she’d taken it up because she felt there was very little to occupy her.

So, this process could be seen as a cycle:

When you look at the reality of staffing issues on Felindre Ward, they are down one Occupational Therapist at the moment, due to a staff member leaving. The only other Occupational Therapist on the ward tries to run regular cooking classes which are successful and wanted but she also spends time assisting people to return home and helps manage this transition. So, if she is off the ward, there isn’t much for people to do. We will be raising this as a key area of concern or an issue in the next few months.

The final point relates to food and particularly, the removal of “Vending Machines” from Felindre Ward. Again, there has been a directive from Welsh Government that only “healthy” snacks will be sold within hospitals or health centres. This feels very akin to the smoking ban or enforcement and while there is no dispute about the health reasons for enforcing only health snacks or food to be dispensed through hospital facilities, this could be seen as taking away a patients’ right to whatever food they wish to eat, when they wish to eat it.

The vending machines were removed (and it’s not very clear why) but they only sold drinks anyway. While there is a snack trolley which comes around once a week, patients are obliged to ask staff to go off-site to a garage to purchase snacks for them, not to mention, cigarettes as most people are unable to leave the ward. We had a meeting about this issue today with ward management and we have found very good alternatives to the lack of vending machines, such as an on ward store of snacks, including chocolate and extra trolley possibilities, staff have been very helpful in trying to come up with alternative solutions.

However, it was also interesting to hear today that one man, currently in hospital, is asking for increased amounts of food, but it is due to the medication he is taking and the side effects, that of increasing appetite. Staff were indicating that they’d have to control or not allow him extras as he may not be aware of how much he’s actually consumed as his body is still telling him, he’s hungry. Staff will have to monitor more closely people’s consumption of snacks (such as muffins or biscuits), etc. I found this article of interest, particularly a point made that “75% of overeating is caused by emotions, so dealing with emotions appropriately is important”.

It appears a great deal of time is spent, both by staff and patients, trying to cope with emotions or feelings that may be coming up. What’s really come up for me, this last Patients’ Council are the ways people are trying to cope and while it’s never definitive, most people seem to be smoking to help themselves and are desperately trying to fill their time up with other things to occupy themselves. Perhaps for some people, they use food. 

I’m curious if choice is taken away from people in hospital environments, the ability to choose to smoke or not, eat snacks or chocolate or drink fizzy lemonade or not, choose which activities they can do or not, are we truly expecting a compliant patient or “rather catching a tiger by its tail”.

Volunteering at Mid Powys Mind

Today Philip Moisson tells us about his experience volunteering at the mental health charity Mid Powys Mind, based in Llandrindod Wells in the heart of rural Powys.

"Of the many organisations that I have worked for over the years the place where I have made the deepest connections with other people has undoubtedly been whilst volunteering at Mid Powys Mind in Llandrindod Wells.

For the past ten months I have been a regular helper in the Art Cafe – which for those of you who have not visited yet combines unique local arts and crafts with a relaxed and homely experience centred around hot drinks and homemade cakes. There are ten or so volunteers currently involved in the Art Cafe and we cover Monday to Friday between us.

The building which Mind uses hosts a drop-in centre for members, the Art Cafe which is open to the public, rooms for groups to meet above the cafe and also spaces for counselling and therapy to take place. There are also a few small offices up another flight of stairs.

As a member and a volunteer I am able to have a hot meal at lunchtime, usually with other people at the drop-in centre. Alongside the Art Cafe there was the chance to try a couple of other voluntary roles around the building, and I can genuinely say that I have looked forward to coming in to help almost every day I have been involved.

Over time I have found out about other opportunities nearby by speaking to other members, other volunteers and of course, paid staff. A few of us have spent quite a bit of time being involved in a Time to Change Wales project (further details on the free Creative Writing sessions can be found here!).

Of all the perks of being involved with a charity, training has to rank quite highly. Some of us have been on the Mental Health First Aid course and a physical First Aid course too. Usually I have a good idea what is going on in terms of the range of courses, services and events which Mid Powys Mind is able to facilitate - in no small part because I update the Facebook page.

Of course, no organisation in the broad mental health sector is immune from the pressures stemming from cuts or from the blunt realities that some of us may refer to in polite or abstract terms through well-meaning debates and arguments. The town, Llandrindod Wells, for all its nearby scenic charm, struggles to offer much in the way of employment opportunity - and that’s whether you have a known mental health concern or not.

However, in terms of focussing on positive outcomes whenever possible, finding a place within reach where people regularly share lived experience with one another has been the most important feature in my own personal journey so far. This will now hopefully involve going forward from a point in the past where I struggled on strong medication with no meaningful support in place, to a position where I am able to live medication free and can fully consider life choices once again."

If you would like to read more of Philip's writings, you can take a look at his own blog, Knowledge of Dark Matters.

Or, if you would like to share your mental health volunteering experience with a wider readership via this blog, and you are based in Powys, then please get in touch.

You can find out more about Mid Powys Mind here.  And congratulations to all those involved in the Art Cafe which was awarded the Group award at the Powys Volunteer of the Year Award recently.

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?

Psychiatry beyond the current paradigm

Last week Laura let me out of the office to go to this conference at Nottingham University organised by the Critical Psychiatry Network and Asylum Associates. It was perfect timing, as it meant I had the opportunity to see Jacqui Dillon speak just a week or so before she visits us here in Mid Wales for our own Shaping Services Together event on Thursday 19 September. 

I stayed for two of the three days and found all the speaker and workshop sessions immensely enjoyable. All stimulated some interesting and relevant debate, and I hope to pick up on some of the specific topics in future blog posts (for example, a workshop on an innovative Finnish approach called Open Dialogue, and Clinical Psychologist Steven Coles’ session on the dynamics of power).

Today, though, I just want to give an overview of the conference as a whole to give a flavour – and maybe tempt some local readers to pluck up courage to step outside the county and take part in an event like this – because there are increasing numbers which is great. I say “pluck up courage” because – I went on my own, I didn’t know anyone else before I arrived, and I was a little nervous about how it would be... two days surrounded by strangers at a huge unfamiliar venue (well everywhere outside Mid Wales seems vast)... and people who more than likely knew far more than I did about the subject – even the title of the conference was a bit off-putting! 

But five minutes after arriving at the venue I was deep in conversation with a woman from Wakefield about how difficult it is to find local groups in Yorkshire where people can share experiences about mental distress. And I was telling her about the peer support group based at Ponthafren in Newtown! (It’s a long drive though... better she sets up her own group in Yorkshire...)

The conference was promoted with this blurb: 
“Voices from within psychiatry who are seeking change are beginning to be heard. The Royal College of Psychiatrists’ leading regular publication, The British Journal of Psychiatry, recently carried a paper from the UK Critical Psychiatry Network entitled Beyond the Current Paradigm, which emphasises the importance of services and practitioners working with rather than upon those who seek their help. Perhaps unexpectedly, it received very little criticism from academics and peer psychiatrists.”

The first morning we listened to three keynote speakers, who started to explore this theme. Hugh Middleton (NHS Consultant Psychiatrist and also Associate Professor at the Nottingham University School of Sociology/Social Policy) began. He said that doctors of any sort only have authority to practice if there is clear evidence that it results in good rather than harm, and many now question whether psychiatrists fall into that category. The paper has “disappeared into a cloud of silence,” and Hugh and colleagues interpret that as “assent.” 

Hugh described how psychiatric drugs are trialled, summarising that all evidence to support the use of such drugs is flawed. The evidence around the benefits of psychological therapies is also possibly flawed – it is felt that if there is a positive outcome from such sessions this is down to the success of the supportive/nurturing relationship which is set up with the "client". Hugh said that we have to accept that sometimes something happens to people which profoundly disturbs them and/or the people around them, and that contemporary medicine provides no better solution than the demonisation or incarceration options of the past. He summed up his session by saying, “people want something different to what they get from conventional experiences. What is it? Let’s look for shared solutions.”

Jacqui Dillon followed, responding to the paper from “an activist position.” It is impossible to do justice to her presentation here, but some of the key points raised included:

• Biological (medical model) psychiatry is now trying to incorporate many of the approaches promoted by critical psychiatry groups, such as the impact of trauma on mental wellbeing. “But this is all about outcomes for psychiatrists – what about outcomes for ‘service users’?”
• It is assumed the doctors are the only ones able to do everything – psychological, social, medical – the lot. The message is: “you need us in charge.”
• Vested interests range through pharmaceutical companies, political parties to society in general, families and carers, some ‘service users’ and professionals.
• We locate madness in others – because it makes us feel OK.

So, what can be done? Some of Jacqui’s ideas to whet your appetite for next week:

• Reframe and reclaim ordinary language.
• Take a stand.
• Work in collaboration with people with lived experience.
• Help promote people’s voice.
• Lobby for change.
• Join a group with similar goals.

And what if we phased out psychiatry completely? What would the world look like then? Again, a few of Jacqui’s ideas:

• Develop non-medicated coping strategies.
• Create a range of self-help support (sharing books, setting up groups).
• Survivor-run crisis houses based on the Soteria model.
• Phase out mental health professionals and give basic skills to people – around active listening, being looked after, and sitting with people in distress.

This session was rounded off by Steve Trenchard, Chief Executive of Derbyshire Healthcare NHS Trust. His background is as a mental health nurse, and he said that he wanted to listen and co-produce solutions not yet found. There is “a need to focus on strengths and aspirations.” And he wants to develop ‘listening’ and ‘being with’ skills. 

Again, it’s very difficult to summarise in a short space, and Steve covered a massive range of areas in his talk, but at each point it seemed to me (and others listening as was discussed later) that his approach as a Chief Exec is extremely rare (even perhaps radical) and much needed. He considered new approaches to dementia care, schizophrenia, the use of physical restraint and seclusion rooms (including a pilot to close the latter) and our obsession with risk. He encouraged more self-control for people, which he considered the biggest factor in improving health, and spoke about the Expert by Experience programme – “no decision about me without me.”

Steve took inspiration, in part, from the past. He referred to The Retreat, set up in York in 1813 by a Quaker called William Tuke, a “supportive and healing environment” for people experiencing mental distress, as distinct from the inhumane and squalid asylums of the time. 

In Derbyshire it seems like things could be changing around services as professionals like Steve are listening to and responding to people’s experiences. I really hope that in Powys people who provide or commission mental health services can make that connection so that we see a shift here as well... And on that note, I look forward to continuing this discussion next Thursday at the Shaping Services Together conference at The Pavilion in Llandrindod Wells! See you there!

An update: Jacqui has kindly sent me her presentation and you can now read it here.