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.

White Rabbit Number Six: John Drake’s Mental Health Blog - 1

As the DIY Futures project comes to an end, the focus is on the stories in the book "It's the inside that matters," which have drawn some really positive feedback. But there are so many stories out there, and one book can never be long enough...  So when we heard about John Drake's experiences recently we invited him to write a guest post for the blog.  John soon came back to us with not one but three posts! Here is Part 1... with 2 & 3 due to follow shortly.

1: Down the Rabbit Hole

There is nothing so very remarkable about falling down that very deep well we call depression. What follows is just one man’s experience...

It was quite a relief when I was first diagnosed with depression. My initial reaction was: Thank God for that, I thought I was going mad! I was certainly getting fixated on some strange ideas and experiencing overwhelming feelings of dread which made it difficult to continue to work...and I loved my job.

My GP referred me to a Community Psychiatric Nurse. He assessed me as suffering from mild to moderate depression and recommended a short course of anti-depressants. But I was very resistant to the idea because I had heard so much about the bad side effects... Fortunately the nurse was very sympathetic to my attitude and suggested I instead try St John’s Wort (a herbal alternative to pharmaceutical medicine). My GP was also supportive of this and said that I should treat it like any antidepressant and use it regularly for six months.

After three weeks I felt well enough to go back to work and in fact, with the aid of St John’s Wort, I managed my condition for the next seven years, throwing myself into my work with renewed dedication. I still suffered from occasional bouts of anxiety but I knew that I had to just keep going...

Until one day I couldn’t... It was as if an abyss had opened up and I was about to fall into it.

I rang the surgery but my GP wouldn’t be available for a couple of weeks! I knew I had to talk to someone straight away and fortunately one of the other doctors had a cancellation and was able to fit me in. She listened to me for what must have been quite a long time (once the dam broke, the flood was overwhelming), signed me off work and referred me to the counselling service that was attached to the surgery.

And now that I was in safe hands, I could let myself fall...

I was offered what I understand to be the standard counselling service through the NHS, which is six sessions of Cognitive Behavioural Therapy. Towards the end of this period I was offered an extension of three further sessions, which I was happy to accept. When I first began therapy, my counsellor assessed me as having moderate to severe depression. By the time I finished the course, I felt ready to return to work. Although our sessions were coming to an end, the counsellor assured me that if I ever needed to see him again I could get a new referral through the surgery.

Throughout these first few months of illness, I had felt very well supported both by my counsellor and by the GP. At her suggestion, I continued to be seen exclusively by the same doctor who had been available on that crucial day – and I think that this continuity of service was very important in my being able to cope with day-to-day living, without being hospitalised – which, along with being forced to take antidepressants other than St John’s Wort, was my biggest fear. Rightly or wrongly, I believed that pharmaceutical antidepressants would take away my mind and that, once in hospital, I would never come out again.

The CBT sessions had taught me how to cope with going to shops and facing the dreaded ‘how are you?’ question from well-meaning acquaintances, but going back to work was another matter. Even though I had met with my boss and we had agreed a back-to-work strategy, it all fell apart when a personal crisis caused everything to unravel – and I was back almost, but not quite, where I started – still down the rabbit hole but resting somewhat precariously on a ledge – no longer falling, but not yet able to climb out.

This time my GP was adamant that I should take stronger antidepressants – but I was equally adamant that I wouldn’t. To her credit, my doctor accepted my decision and continued to support me in other ways. I was referred back to the counselling service and, this time, I was told that I could book a session whenever I needed it, through the appointments desk. I assume this was offered to me as my counsellor believed that I wasn’t the type to abuse the privilege – and in fact I only took advantage of it a handful of times.

Throughout this time I felt that I was being supported in the way that was right for me by everyone concerned in my welfare – and for this I will always be grateful.

Meanwhile, however, I was still being signed off work. Then one day I got a bit of a shock when the finance officer informed me that my sick pay had run out and that I needed to contact the Job Centre about claiming long-term sickness benefit.

And that’s when my problems really started...

Powys Mental Health Alliance Open Day 2013

Last Thursday I made a scenic detour around the Royal Welsh Showground at Builth to attend the Powys Mental Health Alliance (PMHA) Open Day at  Bishop Bevan Hall in a beautiful sunny Brecon. The day was attended by individuals and also staff working for the following organisations - Aneurin Bevan Health Board, Brecon & District Contact Association, Hafal, Powys Association of Voluntary Organisations (DIY Futures project, Powys Befrienders' project, and me - the Powys Mental Health Information Service), and Ponthafren Association. People had travelled from further afield than me - including some from Welshpool and also Ystradgynlais.

The first session was an update from the PMHA trustees about recent developments within the organisation. A new logo was presented, and Chair Bryan Douglas-Matthews explained that the charity had gone through a radical overhaul of late. The eight trustees running the charity have recently developed a new vision - "We believe the collective voice of individuals has the power to improve the world of mental health." 

Trustee Lee Watmough was joined by magazine editor Carla Rosenthal to talk about the revamp and relaunch of the PMHA magazine - now called Headspace. The first issue (1,000 copies have been circulated throughout Powys, and an online version is available) has been extremely well-received, and plans are now under way for an Autumn issue. The magazine is more colourful, vibrant and light-hearted than the previous incarnation, and Lee said that he hopes it draws together the collective voices of not just individuals, professionals and carers, but everybody - "everyone is touched in some way by mental health or emotional difficulties." Carla encouraged people to submit articles, poems, photographs and artwork - the deadline is 30 August. "We want to give a platform to your voice. We want to let people who create services change the way they offer them by listening to people who use them."

Lee and Carla also explained that a brand new website is currently being developed - it is viewed as an opportunity to talk about mental health issues in Powys and break down stigma - watch this space for the launch date!

Lee then described some of the future projects the charity hopes to focus on, including Powys Patients' Council in the Community, teaching others how to lobby effectively, reaching out to the rural community including farmers, helping people deliver a message through innovative drama and fundraising with a difference. Events featuring inspirational speakers and debating topics such as medication are also part of the proposed mix.

Before lunch, and our chance to sample trustee Diane Hart's amazing artwork, there was also a long discussion about the disparity between mental health services available in the North and South of the county, with a focus on crisis teams. Whilst there was acknowledgement of the important developments in both areas (we have written previously about the Home Treatment Teams in the North and South), it was clear that there are still gaps in provision out-of-hours which need to be addressed.

Following lunch the main speaker of the day, Reverend Dr Melanie Santorini, outlined the Time to Change Wales campaign - "don't be afraid to talk about mental health." The campaign is jointly run by three mental health charities - Gofal, Hafal and Mind Cymru, and funded by the Big Lottery Fund, Comic Relief and Welsh Government. So far about 150 Welsh champions have been recruited by the campaign to challenge stigma, perhaps by writing a blog post, or talking to the media, or volunteering at events. Locally there is an event on 3 October in Llandrindod Wells to coincide with World Mental Health week and the aim is to boost the number of champions to 200 by the end of the project.

Melanie also spoke about the importance of talking about mental health with family, friends and colleagues, and politely challenging those who stigmatise people experiencing mental distress. The campaign regularly refers to the 1 in 4 people who supposedly experience a "mental health problem" (we posted about this here). However, it was good to hear challenges from the audience at this event - "it's not 1 in 4 it's everyone!" and Melanie herself referred to people who "think they don't have the experience." She told us a personal story of explaining to someone she knew recently - "I have a mental health diagnosis". The man nearly fell off his chair. He then said - "but you look normal!"

The day was rounded off for me by a question and answer session with two Community Psychiatric Nurses (CPNs) from the Brecon area - Andrew Stephenson (Team Leader) and Dawn Carey. They talked about a variety of issues, including:

• Working alongside the Home Treatment Team in the South to ensure people have a supported transition from hospital to home, and also to reduce admissions.
• Outlining the referral process and distinguishing between Primary Care Services (GPs, nurses and counsellors based at health centres) and Secondary Care Services (CPNs, psychiatrists and support staff in Community Mental Health Teams).
• The impact of the Mental Health Measure on the ability of an individual to self-refer back to a Community Mental Health Team for further treatment.
• The new Care Treatment Plans which were launched in June 2012 and the role of a Care Co-ordinator (nurse, doctor or social worker for example) in developing them with an individual. Paper and electronic copies are available - and Shropdoc can access these via the Home Treatment Team staff as appropriate.
• Out-of-hours support as provided by Shropdoc and possible referral to out-of-county 24 hour assessment units.
• The pros and cons of having three different health boards providing mental health services throughout Powys.
• The involvement of advocacy services to support inpatients at Bronllys Hospital.

I found this session particularly useful as it is a real luxury to have staff providing mental health services in a specific area to be available to fill in the many gaps in our knowledge in such a complex and ever-changing area.

All in all a really interesting and useful day - and I look forward to the next one that PMHA organise! If you were there - tell us what you thought.