Saturday, 26 April 2014

The Rain in Spain...

We (Paul and I and the children) had a week's holiday in Spain over the Easter break.  This was a big event for us - we tend not to take holidays abroad, partly because of the expense and partly due to the logistics of travelling with four young children.

However, the children are not so young now - the little one is six and a half now, and really not little at all.  And we desperately needed a holiday - we booked it in the New Year, after our family car was written off in an accident and when we had puppy problems (which have since been resolved).  We just had to have something to look forward to.

The holiday exceeded our expectations.  It was an all-inclusive package, something that I was not sure would be a good thing.  I had visions of all of us eating and drinking far too much and becoming extremely unhealthy as a result.  Well, we did eat and drink too much, but then I soon relaxed about that - we were on holiday, after all.

The weather was hot and sunny.  The children were contented and well-behaved.  Paul and I relaxed completely, and it was just exactly what we all needed. 

Since our return, I feel as if that holiday existed in a parallel universe.  The chilled effect did last for a couple of days since we got back, but now, only a short while later, although I can cast my mind back and remember spending a large part of every day for a whole week lying in a sunlounger, somehow it doesn't seem quite real. 

Never mind.  It happened, and it might happen again.

I have been writing like crazy since I got back.  I re-read some of my favourite motivational books while we were away, and absorbed a lot of the advice for better living.  I love that sort of book, and self-help books - although I did also read a novel 'My dear, I wanted to tell you,' by Louisa Young, which I was very impressed by.

Anyway.  I have been writing fiction.  Most of this year I have been in a writing frenzy, as a matter of fact, but now I am resolved not to waste anytime doing anything else.  My cleaner started this week - remember how Paul suggested that I should have a cleaner?  I have still been busy around the house, but she did some of the jobs that I most dislike, which was nice.  And it has spurred me on to further action - I have to keep writing so that I can keep affording to pay the cleaner!

Some of my new books are on Amazon already.  Paul has designed the covers for me, and done quite a good job.  They are quite short, novellas really, but the one I am working on now will be longer - a full-length novel.  It is a romance, and not a great one.  At first I was a little ashamed of writing it, but now I have relaxed and started to enjoy it.  I am not worrying too much about the plot or the characters - the story is just coming out, almost as if the book is writing itself.  I am twenty thousand words in now, and hoping to finish it by the half-term holiday.  To this end I am eschewing all social encounters and other distractions, and I even spent the whole of this morning (a Saturday!) in bed in my pyjamas, typing away like a woman possessed. 

Meanwhile, my memoir is selling well.  Sales had dropped in recent months, and although I was disappointed by this, I was not surprised, as the book has been out for almost three years now.  However, I returned from our holiday to find that my sales figures had leapt in the week that we had been away, and even now, a week later, the book is high in the Amazon ratings.  I am delighted.  It even has a #1 Amazon Bestseller flag next to it on the screen now. My memoir is #1 in Schizophrenia, something that would have made me feel a bit conflicted a year or two again, but which has no bearing at all on my state of mind these days!

The reason for my sudden bookselling success escapes me.  Perhaps it is just my time.  But when Paul asked me what I thought had changed I told him that it is definitely my newfound motivation, garnered from all the books I have recently read and re-read.  And maybe there is a grain of truth in that - I am feeling a lot more positive recently, and good things do tend to happen to people who expect good things to happen.

I'm tired.  That last sentence was nowhere near grammatical, and I am starting to ramble, so I am going to stop this post right here. 

Friday, 11 April 2014

At the Summit (post 2)

I just had a call from the Campaign Manager at Rethink, who had read my blog (well, I did point to it on Twitter).  She was very sweet, reassuring me that, despite my fears, I was coherent in my 'summing up' yesterday, telling me that I was not the only person to find these sort of events exhausting, and saying that Rethink would be happy to involve me in future events, should I change my mind. 

Anyway, I got to thinking that I really should report on what actually happened at the Summit yesterday, rather than what happened in my head.  So, there were various workshops, on Crisis Care, Primary Care and so on, as I mentioned in the previous blog post.  During these workshops (each delegate attended two) we were invited to discuss what is in place locally and what was needed to improve the system, also what barriers to such improvements existed and how they could be overcome. 

The major conclusion to come out of the day was that more communication is needed, or, as the CCG Commissioner at my table in the physical health workshop put it, more 'inter-operability within systems'.  She said that, for example, psychiatry is still operating largely on a paper system, whereas GPs have long since had access to computers, and that this is a huge bar to communication and monitoring. 

This lady was of the opinion that there was no point starting from scratch, trying to put new facilities in place (like the wonderful sounding mental health centre at Bondi Beach we were told about in this workshop.  Motto:  Keeping the Body in Mind.  Catchy).  She said that would cost too much and take too long. 

In the Commissioner's opinion, the only way to make improvements in physical healthcare of the mentally ill, such as getting people to give up smoking, and tackling the over-eating and consequent weight gain caused by the medication, would be to link to third-party providers.  She said social prescribing would be useful - like giving people a year's free gym membership, or sending them on Stop Smoking programmes.  She also mentioned that there are some great tools available - like a drug called Champix which she says is miraculous at stopping people smoking - but that there is too much risk associated.  She said Champix carries a small risk of depression and suicide, so nobody dares to prescribe it.

In my opinion, risk is a big problem in mental health care, and the risk is often over-estimated.  An example given yesterday was the need to do a risk assessment before a patient can use a gym in a mental hospital - meaning that these gyms are under-used (and presumably then in danger of being closed as a result).

 In the Crisis Care workshop, we heard from Sunderland's Initial Response to Urgent Enquiries (or something like that) team.  They seemed to be doing a good job of getting to people more quickly, by use of telephone and home assessments.  They were treating people in their home for two to four weeks, providing mainly psychological support, and thereby avoiding a lot of referrals to IAPT or secondary services.  (Personally, I would like to see an increase in referrals to IAPT for CBT, but in my local area there's already a wait of a year, so I guess that would be impractical).

We also heard, from one of the London Trusts, that provision was being made for more Crisis Houses, set up for short stays, which prevented hospital admissions.  Which, in my opinion, has got to be a good thing, as long as the crisis houses are run and staffed by good and gentle people.  (Oh, and incidentally we learned from the Minister for Care that we can now choose where we want to be treated for mental health problems, as for physical health.  Great news is theory, although recently whenever I have been sent a 'Choose and Book' appointment letter for myself or a member of my family (for any physical health problems) there is only one choice available).

What I would like to know is how the system plans to deal with people who refuse treatment.  One lady in the workshop was very emotional as she told us how her daughter was recently sectioned after she refused an injection, which makes me think that things have perhaps not changed all that much.  Once you are in the system, it is very hard to get out, and force is over-used - the mother said herself that on this occasion she did not think her daughter needed to be hospitalised.    

I really think that people should not be forced to take medication, and I said so to one of the Sunderland clinicians after the workshop.  He started to talk about forensic cases and how progress is being made with those who refuse medication.  But I made the point that the mentally ill in the criminal justice system should not be treated in the same way as those who have not broken the law. 

I know this seems harsh to those people, or their children, who maintain that they would not have committed crimes if they had not been ill.  It is harsh.  But I still think it would be a good thing if those who had not offended were not treated forcibly in the mental health system.  Ever.  It would stop 'risk' being used as an excuse for brutality, in some cases at least.  It would be a starting point.

I am rambling now!  I am tired again, and it's hard concentrating on writing while supervising children - I try not to do it usually.

Anyway, I suppose yesterday was an interesting and educational day.  In that workshop I learned, for example, that the fear of service overload stands as a barrier to developments that might otherwise be useful, like the use of email for patients to communicate about mental health problems.  It's necessary to know about these things, because we need to create conditions that mental health professionals can operate in.  Making their jobs harder, or impossible, would not help the patients. 

I still wonder what I can do with all this knowledge.  I came home with umpteen pamphlets, leaflets, and several pages of handwritten notes about all sorts of aspects of mental health care, and after sifting through them I am still no clearer about how improvements will actually be implemented.  All I know for sure are the things I went into the conference convinced of - that the label 'schizophrenia' needs to go, and that we need a mental health system we can trust to help us.

I am glad to be able to say that progress is being made.

I think.

At the National Psychosis Summit

Well, I have loads to say about yesterday's Summit, and only a short time to write this post.  I have sent the girls out to walk the dogs (under massive protest) and the boys are watching TV.  In half an hour we are going swimming, and I haven't packed the bag and I still have my pyjamas on. 

So I'd better get started.

First of all, it struck me with force yesterday that I was really lucky to be there.  The conference (Summit sounds more important, but I need to get over that) was held in Dean's Yard at Westminster Abbey.  It was a stunning venue, and as I sat in the main hall listening to the opening speeches I thought to myself, grandiosely, 'I have arrived'.

I do get really excited about going to London for 'Work'.  Having never really had a career, despite the promise of my childhood (glowing star child of Roedean and all that) I relish the chance to feel as though I have something to contribute to the world.  The fact is, though, that most of the others at the conference were professionals - I had only earned my place there by default. 

Anyway, it was good of Rethink to involve me and the other 'experts by experience' in the day's events.  Changes are afoot in mental health - because the government has realised that the current system is unacceptable.  I had hoped that I would be able to put my case across for the abolition of schizophrenia as a diagnosis, and for the ending of restraint and forced medication, with the aim of making the new system a kinder and more healing one.

I did say these things, throughout the day during the workshops I attended and to people I met at lunch and so on, and I am sure that some people listened and perhaps understood a little.  However, when I was given a microphone at the end of the day's summing up, I am not sure if I spoke coherently at all.  I was so tired by then (I had not slept much the previous night and I always find these sorts of events exhausting anyway).  I bumbled away about consent and control and human rights until someone took the mic off me, and I felt like a right idiot afterwards, especially when one of the other 'experts' then gave a rousing and moving speech from the podium.

In my defence, the chair of the event, Lord Victor Adebowale, was a bit of a bully, and kept interrupting to say, 'so?' or 'and?' which was quite distracting.  He did this not just to me, but to lots of the other people who tried to ask questions or make points.  He is a black guy (I am not sure if this is the correct term now, but it was when I was at Uni many moons ago) and he had a real chip on his shoulder about the treatment of black and ethnic minorities in the mental health system.

He interrupted one lady quite rudely, when she tried to say that people in these groups can be hard to reach, shouting her down and insisting that it was the services that are hard to reach.  He made a point about how disappointed he would be if the BME workshop attendees were all from the BME groups.  He was quite objectionable in his overall demeanour and behaviour.  And the result was, I am sure, just to put people's backs up.  He was very 'you and us' about it - he actually said, 'I hope this day is not going to be all about your people'.  I mean, black and white are not us and them - it is a matter of we.  And the strange thing is, I got the impression that everyone present understood this - except Lord Victor.

I was really disappointed in him.  Norman Lamb, the Minister for Care Services, also made some opening remarks, and he came across as a proper statesman - dignified although not above a joke, fair and courteous.  But Lord Victor, I felt, treated us as if we were all his minions.  Was it me, or did I see Rethink's Victoria Bleazard titled 'Empress' on the big screen in the closing speeches?  If it was there, it was gone in seconds.  It did make a valid point, but I wouldn't want to get the Rethink staff into trouble.  I only mention it because I wouldn't like any of the other 'experts' to have thought they were hallucinating.  If they are anything like me, they will always be watchful for sudden symptoms.

Lord Victor's failure to be polite made me feel even more disappointed in myself, for not being clearer when I did get the chance to speak.  I have a chip on my own shoulder, and it's hard to shake off.  I did say that we have come a long way, to have people like me involved in co-producing the summit (although to be honest, 'co-production' is rather over-egging the pudding in this case - my contribution amounted to just a few phone calls about minor matters).  We need to co-operate.  Establishing trust in the mental health system is crucial, and for that to happen we have got to stop being adversarial about it.  Even the term 'survivor' gets peoples backs up - although I do find it hard not to feel like I have somehow escaped from the fate which often befalls people with my diagnosis (medication for life and disability benefits for life).

I am not even sure I made the point about how unhelpful diagnosis is, during the summing-up.  However, I have a feeling that this fact is already beginning to be acknowledged in the system - the fact that this was called the Psychosis Summit and not the Schizophrenia Summit was a big step in the right direction, even if Lord Victor and others did keep speaking about schizophrenia.

I don't think I am going to do any more of these events.  I never seem able to stay calm and always end up feeling that I have over-exposed myself.  I don't seem able to come across very rationally.  Mental health treatment is just such an emotive subject, and all these years on I am still burning from the injustice of the 'care' that I received.  And change is happening anyway now.  I am not really needed.  I can continue to write and to post here - I don't need to put myself though the stress of days like this.  There are enjoyable aspects to them, but these mostly involve an element of me fooling myself that I am important, which is paramount nonsense.

There are many others all working in the same direction.  I am a member of a very active Facebook group, Undiagnosing Emotional Distress, and I have learned huge amounts from the people in that group, and from many others in the national and international survivor movement.  All I would say to them is, if you ever get to events like yesterday's, please try to be calm and polite when you put your points across.  Otherwise, the professionals will switch off.  It is just like it was in hospital - if you fight you will be injected, if you work with the professionals the process will afford you, and us, more dignity.  I am a fighter, though I wish I was not.  Those of us who have been damaged by the system will perhaps always be angry.

Anyway.  Things are on the up.  We have Jonny Benjamin now, making mental health sexy.  He was there yesterday, with a film crew, helping people make their pledges to improve the system.  He is a good guy - he has put himself on the line by being open about his diagnosis, he is rational and calm and he is attempting to reform the system without criticising it.  Although, of course, his diagnosis changed from the dreaded 'schizophrenia' to the gentler-sounding schizo-affective disorder.  Maybe it will, or has, change again.  Such is the way of psychiatry.

I believe that Jonny working with the system, and the fact that he is so personable (let's face it, humans are more influenced by other good-looking humans - sad, but true) will make more difference to psychosis treatment than anything I could do or say.  I felt so stupid by the end of the day yesterday - for all my talk about how the diagnosis of schizophrenia was unfair and damaging, I can't help wondering how many people thought it was justified in my case!  I am rational and capable in my daily life, but I am afraid mental health events bring out the worst in me. 

In any case, the agenda for yesterday was set before any of us arrived.  For example, there are now financial incentives for NHS trusts to include physical health care in the treatment of mental health patients - yesterday was about working out how to implement such policies.  Other workshops were on primary care, crisis care, employment, and provision of mental health services for black and ethnic minorities.  These are all things that the government has already pledged to improve, as with the whole parity of esteem thing.  My inclusion, and that of the other 'experts' was similarly already decreed by the powers-that-be. 

As I said, I am going to step out of this sort of event now, but I do hope that others will learn from my mistakes yesterday - step carefully, speak your truth clearly, make your points quietly. 

Especially those who, like Lord Victor, hold high profile positions.  Otherwise you (we) risk doing more harm than good to the cause we are fighting for.

Tuesday, 1 April 2014

A Cleaner!

I had a big surprise yesterday - Paul emailed me (from work, in his lunch hour) with a link to a BBC article and suggested that we get a cleaner.  Here's the link to the article he sent me:

Basically, the businesswoman featured in the article says that her top tip is to hire a cleaner, thus freeing up time to be used more effectively.  I thought he was having a laugh at first.  I mean, I am a housewife.  I am supposed to be cleaning.  It's kind of my job.

But he wasn't joking.  My dear husband really believes that my time spent writing is worth more than what we would pay someone to do the cleaning around the house.  'How about just have someone for two half days a week?' he suggested. 

Two half days a week?  Well, I'm not silly.  I jumped at the offer.  But later in the evening I asked him if he seriously thought that this was a viable economic proposition.  We're not exactly rolling in money.  I thought he would admit that it was not, and I wouldn't have minded in the least.  It still would have been a nice thought.  But no.  According to my beloved, anybody can clean, but I can write, and that, therefore, is how I should be spending my time.

The thing is, I have been writing anyway.  I have been writing an awful lot in fact.  As I type this now, Paul is putting the finishing touches to the cover art of three new chick-lit novellas, ready to publish them on Kindle tonight.  (I have written them under a new pen name, and won't link to them here, because they are so far removed from mental health writing that it would just be embarrassing to promote them to the readers of this blog).  I have also almost finished a children's book, and my long-vaunted 'recovery book' is not far from completion.  And there is even a romantic novel in the offing!  (I have enjoyed writing this greatly, in a slightly shame-faced sort of way.  I will definitely be using a pen name for this one).  I don't imagine that any of these books are going to make my fortune, but I am pleased that I have written them, and if I persevere I am sure that over time I will gain a decent readership.

I wrote a lot of words in a short period, since the New Year in fact, and now I am just pulling the strings together, with Paul's help, to publish all these books at once.  Why so prolific all of a sudden?  Well, I was inspired by various stuff I read about self-publishing and entrepreneurship, and consequently I went on a writing jag.  Incredibly, at that time, I was also managing to keep the house in order and the dogs walked.  For a few weeks - maybe eight in total - I was superwoman.  I was writing six books more or less at the same time.  It was mad (I am allowed to say that). 

And then I crashed.  What happened was that, a couple of weeks ago, the sister of my good friend died, and my friend's world was rocked.  It has been very upsetting to see a family suffering in that way.  A lot of local people are devastated - this was one young and popular lady, who passed away very suddenly.  It's not my tragedy of course - it's my friend's - and I know that the impact on me is negligible in comparison.  I am almost ashamed to admit to being affected by it.  But the truth is, it made me realise that I need to get my priorities straight.  We really should not all be pushing ourselves too hard in this life.  So many of us are.

Life sometimes seems like a race, or a competition, to see who is the busiest or most successful.  I have been lucky not to be a part of this most of the time - I have never had a career to be competitive about.  I suppose my pride was in being a mother, although that is a nebulous job title, and one in which success is impossible to measure.

Anyway, in the few years since I started writing, I have not been able to avoid hoping to achieve some level of success.  My priorities have changed.  I kept feeling that I should be doing more, to the point that in the last few months I made myself so busy that it was getting ridiculous.  Although it seemed at times as though I was moving mountains, in fact I was starting to chase my own tail, becoming progressively busier, trying to fit in more, attempting to do everything at once.

It was getting silly.  It could not have lasted, and it didn't.  Prompted to reassess my life, I decided to concentrate on the relationships that matter to me, and step back from everything else.  I didn't write a word for a week, and for the next week I wrote only journal entries.  Meanwhile, I looked after the kids and the house, did some gardening, took my Mum to the shops... 

It should have been wonderful, and in some ways it was.  But I missed my writing, and after a couple of weeks away from it I knew that I was getting close to picking up the reins again.  I just knew that I would have to find a way to be gentler on myself when I did so.  Then yesterday Paul sent me his wonderful email, and everything seemed to fall into place.

I still can't quite take it in, and I still struggle to believe that this new modus operandi will be justified, but I am going to try it.  I have written several thousand words again today, motivated by the fact that my husband believes in my ability and my worth.  I could have done this anyway, because I did a lot of cleaning and washing yesterday, thus freeing up my time today.  But it is great to know that from now on, however busy my week gets, I will be able to write for at least four hours (I am going to have someone help me with the housework for two hours on two days a week, and during that time I am, without fail, going to go out to my summerhouse and get on with it).  I expect I will do a lot more than four hours a week - but this way, I know that I will have at least that time available, as a minimum.

Funnily enough, a short while ago, I was cleaning the conservatory when a thought came to me unbidden, 'Enough of this!'  I know it sounds unnecessarily dramatic, but it felt as though my unconscious was rebelling.  I have spent a good portion of my life cleaning, not least during the years I spent working in hotels as a chambermaid.  At that time I found the work therapeutic - it kept me active and useful while having the least possible adverse impact on my nerves, or so I reasoned then.  Now, though, it is time to move on - I would never have said as much to Paul, but I am very grateful that he has said it to me.

So.  The pressure is on - but not in a bad way.  As I say, I have been writing pretty much every spare minute for months anyway, except for the last couple of weeks when I was kind of burned out.  It will be an added motivation to think that I am now writing as a professional.  And since I had done so much preparatory work recently, the books I am publishing tonight, and those I am almost ready to publish, plus others that I am planning, should start to set me up financially for the months ahead.  I will have to keep the pace up if I am going to earn a decent living from it, but I feel confident that there is at least a possibility of that happening.  And I am looking forward to the challenge.

It's exciting!  I have found someone who's happy to do the cleaning work, and she's going to start at the end of the Easter holidays.  She's just going to be helping out in term time, as I won't be able to write in the holidays anyway since I will be with the children.  She is the perfect person for the job - I just hope she doesn't change her mind meanwhile.

I have never been an employer before.  Well, I did have some help with the kids when they were young - the teenager from across the road used to come in and play with them for a couple of hours three days a week, while I made the dinner and did some other chores.  But I have never paid anyone to do cleaning or other similar tasks before.  Part of me feels a bit guilty, and part of me thinks it is just my turn now to start aiming a bit higher.  I'm not young any more, and I'm well qualified academically - maybe Paul is right and I should be using my time to better effect.  I'm so touched that he wants to do this, and I am determined not to let him down. 

I have been thinking of other ways that I can ring fence my time to write.  Get someone to walk the dogs? No, I need the exercise.  Have the shopping delivered?  I might do, but I'll wait and see how the writing, and the earnings, go first.  Childcare?  Absolutely not.  I like working, but my kids are all at school now, and I want to be able to see them after school and in the holidays.   It's not realistic to spend every spare minute writing anyway - I'll just end up becoming one-dimensional, which is something that no writer needs. 

It's just a trial.  Maybe it won't work out.  But I have high hopes that it will.  It's certainly worth a try.  I know a few people who won't approve, but that just adds to the pleasure of it. 

Apologies for any repetitiveness in this post.  I could have written it in one sentence.  'I'm going to get a cleaner'.  But where would the fun have been in that?