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.


  1. What exactly was decided at the summit and how exactly is the service going to improve? I think everything needs to be planned again from scratch and the training of a lot of doctors and staff needs to be changed -their approach to the person in distress to start with. I know these things change from place to place. I just finished reading "the dark threads" -it is the story of an 18 year old girl who gets sucked in the mental health system in Bradford in the late sixties/early seventies. The worrying thing is that nothing much has changed since. It could all happen today. It is all very well to say that everyone is entitled to CBT when there are not enough therapists to go around etc. Could peer-support come in and help just by listening. I suspect that the "professionals" wouldn't like it. Volunteers would get in their way. You are very brave to venture in the lions' den. I wouldn't dare. I would feel like screaming.

  2. Sometimes I feel like I am walking a fine line between brave and stupid! But I am certainly going to step back, if not out, for a while. Because you're right, sometimes it seems as though nothing ever changes. L x

  3. Rachel from Georgia23 April 2014 at 11:21

    Hi Louise! My name is Rachel and I am currently working in a group project on Schizophrenia. We have been following your blog, and reading all of your posts and are so thankful to learn about your experience. As our semester draws to an end, we have a few questions that we are hoping you could answer more specifically to help us share your experience to the fullest. They are as follows:

    1.DId you have anyone in your family who had schizophrenia?
    2. Do you feel that you are fully recovered or do you worry about more episodes?
    3. Do you know of one main trigger that sent you into your first psychotic episode?
    4, Did you have any specific delusions or specific voices?

    Any information you can give us will be greatly appriciated! We are looking forward to sharing your story, and helping our class understand Schizophrenia and give them facts instead of the myths people usually associate with the disorder.

    Thanks again!

  4. Hi Rachel

    It's good to hear from you. I have made a note of the email address you provided in your second comment and I will answer your question about my family by email shortly. The other questions I'll answer here, in the hope that they may help others too. So firstly - yes, I do believe (or hope) that I am fully recovered. I used to worry about the possibility of more episodes, until I had CBT a couple of years ago. The therapist was really helpful - she told me that I had social anxiety, which made a lot of sense of my experiences. I am not denying that I was psychotic, and I will never forget the episodes I suffered, but I think they were triggered by drugs and by my extreme anxiety. Now that the anxiety has gone (the CBT taught me techniques to combat it) I feel that I am not at risk of further breakdown. I would never rule it out, but I don't live in fear of it happening.

    Next - The first psychotic episode I suffered was almost certainly triggered by cannabis use, combined with the stress of University and the guilt I felt in splitting from a long-term boyfriend. And the anxiety of course. I would put the cannabis use as the prime factor, if I had to choose one.

    And finally - Specific voices and delusions - I only ever heard a voice twice, and both times it was my mother's voice. It was one of the strangest things that has ever happened to me, and one of the most interesting. Delusions - I had so many. The one that I remember most clearly is thinking that I had put my beloved nephew into the tumble drier. I read a newspaper article about a woman who had put a baby into the tumble drier, and somehow convinced myself that I had done the same. I also thought I was a spy, and at that the same time I believed that I was being spied upon. And when I was in hospital I convinced myself that I was the Lamb of God, and was going to be sacrificed. Whenever I had a shower I thought I was preparing myself for this human sacrifice. It sounds ludicrous now, but I was terrified! I thought I was a horse too at one point, goodness knows why... The mind is a peculiar thing!

    Good luck with your presentation.


  5. Another thing, Rachel - if you have not done so already, please look at the Mad in America site, run by Robert Whittaker and Laura Delano. It is a brilliant resource, much more comprehensive than my blog!