18. 30th October 2016 Happiness vs Joy and a summary of the events so far

Last week the Jewish people celebrated Simchat Torah – the joy of the Torah.  However, I would argue that this is not a joyous festival, rather a festival which, in a very contrived way, tries to make the Jewish people happy.

The idea of the festival is a good one – Jews have had enough of synagogue at this time of year so why not end the holiday season with a party to celebrate how the Torah, the bible, enriches our life.  However, the execution of the festival is poor – the men walk around in a circle for at least an hour; the women look at them from afar and pretend to dance and the children get excited by eating sweets.  Obviously I am referring to an orthodox setting here, but, I don’t think that the customs of Simchat Torah aim to provoke a real sense of joy in any Jewish denomination.  The festival might make certain people happy but I don’t think it makes them joyful.

Jewish scholars and self-help books alike say that happiness is something temporary.  Many people are happy at their birthday party, watching a film and some strange odd balls even are happy at Simchat Torah. However, the same scholars and help-self books argue, that the real joys of life can only be found be in connecting to your partner, to yourself and for Jews at least, to the Torah. And that joy isn’t temporary and certainly doesn’t come because you are at a party – it is, I am told, much more real and long-lasting, and indeed how most people want to live their life.  Thus although I said in my last blog that some people call a succah, the temporary structure that we sit in for the festival of succot, a ‘happiness box’, perhaps that is the wrong phrase – perhaps ‘A joyous box’, is more apt – a succah can, I think, bring a real profound sense of joy, in the knowledge that you can get by quite happily with not that much.  I pray that I, and the millions of others who are in pain for whatever reason, will find that real sense of joy, very soon.

 

In other news

Just to recap the story so far in case you have lost the plot or have missed an episode or two.

The background to the story was that I have suffered quite severely from depression for over twenty years including three voluntary admissions into a psychiatric hospital.  Through an extremely convoluted process I became self-aware of cognitive symptoms which were severely impacting on my quality of life and were probably the cause of my depression.  My cognitive deficit included problems with memory, processing, problem solving, attention and decision-making and other capabilities that most people take for granted. And although I haven’t mentioned it previously in this blog – because it hasn’t seemed as important as my cognitive symptoms – I was also drowsy a lot and, since coming off my antidepressants medications,  had a huge range on involuntary movements (eg involuntary walking, making claw shapes with my hand, involuntary bowing etc).  At first I thought that my cognitive symptoms could be due to absences – 1-2 second seizures that are easy to miss – even by the person who has them. But later I came to realise that they were due to epileptiform activity – the background epileptic discharges which were happening in my brain.

I told my neurologist about my symptoms and she prescribed me to a week in an epilepsy hospital for a videotelemetry assessment.  This involved being in a room 24×7 where I was videoed and a recording was taken of my brain activity (an EEG).  Being a little bit bored in this environment I started this blog ‘Epilepsy and me’.  In my simplistic little mind I believed that by the end of the week a solution to my problems would be found.  But I was severely mistaken.  At this point I didn’t understand that my condition was rare and that epilepsy can be an extremely difficult illness to treat.

At the end of the week the neurologist said to me that there was nothing she could do for me as there were no recorded episodes of seizures on my EEG – even though I had epileptiform activity.  She told me to go home and see my GP.  Hope faded.

However, I knew that I couldn’t live like this, and for the sake of my children, I must be a more together and less depressed person and a solution to my problems must be found.  So I tried the alternative route and sent a clump of my hair off to Germany to be analysed for lack of minerals.  I took all the potions that my naturopath suggested but the brain fog continued.  And so the saga went on.

Then a doctor, who I highly respected, recommended me to Super-Busy-Very-Important-Doctor.  The NHS waiting list to see him was six months long but, not to be put off, I wrote to my MP and explained my situation and sure enough all of a sudden Super-Busy-Very-Important-Doctor could see me a lot sooner than he initially said.  At my appointment a trainee doctor listened very carefully to my story and then relayed it to Super-Busy-Very-Important –Doctor who said something like, ‘Sharon, you are not having seizures – you have having pseudo -seizures/ non-epileptic seizures.  You have a dissociative disorder.   You see Sharon – there are two parts to the brain – the neurological part and the psychological part. You have epilepsy – that is neurological.  But you also have non-epilepsy (indeed 10% of people with non-epilepsy have epilepsy as well).  Non-epilepsy is psychological. Go home and think about what the psychological cause of your disorder could be eg Were you abused as a child?, Have you witnessed mass murder? etc , Take some anti-depressants and come back when you have discovered the work you must do in therapy – the therapy will start in 6-9 months’ time.

Although, the term dissociative disorder resonated with me because I did feel separate from the world, I wasn’t so sure about his plan so I sought out another doctor for a second opinion.  In the meantime the Department of Work and Pensions, after carrying their extensive but very peculiar assessment  of me,  got back and said – we agree with you Sharon – you are too ill to work and, in addition, your disability is so chronic that we believe that the government should give you additional income so that you can manage your lifestyle.  I was pleased for the income but depressed that my life had got into such a hopeless state.

And then this week I went to see Doctor Eventually for a second (or was it third or fourth?) opinion.  He said something like ‘I agree with Super-Busy-Very-Important-Doctor – you have a dissociative disorder. However you are still having epileptic discharges. So try taking these tablets (sodium valproate –an anti -epileptic) – I can’t promise, but they might help.  It’s worth a go.’

So in conclusion no doctor really knows what is going on in my head but perhaps sodium valproate will give me a sense of the inner joy that I crave.

 

 

17. 16th October 2016 – The Happiness Box

The Jewish festival of Succot begins tonight.  For seven days the Jewish people eat outside in a small hut (a succah) with a roof which purposefully has holes in it and perform a very odd commandment – shaking a palm branch (a lulav) and smelling an ugly looking lemon (etrog).

The Jewish people are known for being bookish entrepreneurs who are rather useless at DIY. And therefore asking them to make a hut (OK these days you can buy a prefab version but in the olden days everyone had to make it themselves) and eat a meal in it every day is a big ask and way out of most Jews comfort zones.

A rabbi I know explained to me once that a succah is also known as a Happiness Box – Hashem is forcing the Jewish people to go on a camping holiday once a year because She knows it is good for us.  It is good to be outside, protected only by the forces of Nature and appreciate Her presence. And it is also good to feel the presence of Hashem in something odd and peculiar – in a lulav and Etrog. It becomes tangible to understand the Hashem is everywhere – in the unexpected, in the different and in things that we simply do not understand. It actually makes us happy to declutter for a bit, to become aware that to survive we don’t need much and in a very deep sense we experience joy by revealing in the simplicity of life.

During the Shabbat of the middle days of Succot in synagogue we read from the book of Koheles (Ecclesiastes). ‘Futility of futilities! – Said Koheles  – Futility of futilities! All is futile! What profit does man have for all his labor which he toils beneath the sun?’[1] And so King Solomon – the wisest and richest man of the time – goes on to discuss that even though he has riches, women and wisdom, he really cannot see the point of his existence because, after all, everyone dies in the end.  However, at the end of his deliberation Solomon concludes that everyone can find joy in the mundane and the trivial and that performing Hashem’s commandments is the ultimate purpose to life.  Thus the rabbis throughout the ages have argued that, in fact, Koheles is a positive book which can bring joy to this happy festival. However, I have always considered Koheles as the Torah’s (the bible’s) book on depression.  It teaches us that depression isn’t just a scourge of the modern age – inflicted on us by mobile phones, a fast paced life and consumerism – but a very human condition that has existed throughout the history of time.

Benefits news

I have been awarded Personal Independence Payment (PIP) – with thanks to my benefits advocate, who helped me fill out the form. Of course, I had to appeal on what is called a Mandatory Reconsideration, as my first application got refused.  I, along with about 23% others successfully won that appeal. Of those that appealed the Mandatory Reconsideration decision at went to Tribunal 65% were successful in appeal – anyone would think that the government were trying to wear already worn down people down, to save them money.

On the one hand getting PIP is really good news – the money will be useful also if anyone says to me that I am not really ill and all I need to do is take up a new hobby and do some exercise I can say ‘Well if the government think that I have a chronic mental health problem which is effecting my daily functioning and they don’t think it can be easily resolved, why can’t you?’  However, on the other hand, at the age of nearly 40, being awarded benefits for a mental health condition is the very last place that I want to be.

Medical news

Some epilepsy Facebook groups says that people with epilepsy are Warriors – they have to fight a hard battle.  In the past couple of weeks I have had a warrior mentality in my quest for finding an appropriate doctor give me a second opinion on what is going on in my mind – although I believe that Very Important doctor was correct in saying that I have a dissociative disorder – I do not believe that my problem is psychological – I think it is neurological.  Finding a doctor has not been as easy – I look very closely at a potential doctors research interests to see if they are a good fit for my condition.  However, making an appointment with one has been even harder.  At first I tried Doctor From Abroad.  He would not see be because he said I needed weekly therapy for at least six months and I do not think that this is the right appraoch.  Then there was Doctor NHS.  She said she would be happy to see me but I would need to be referred by my GP and my GP said that because her hospital was in a different NHS area from where I lived, I could not be referred (and I she didn’t work privately so I couldn’t pay to see her).  Then there was Doctor Compassion.  I was very hopeful about her because her research interests looked like a perfect fit, but unfortunately she was on compassionate leave until the end of the year.  But good the news is that I found Doctor Eventually. Eventually I have found a doctor who works privately – his research interests are not a perfect fit but they are good enough.  And because he works privately I can see him straight after succot.  He also works on the NHS so that hopefully I can transfer back to NHS care after I have seen him.

The videotelemetry that I had in July shows that although I am not having seizures I do have epileptiform activity (ie susceptibility to seizures) and I have 24 discharges in a day (24 is not considered a lot).  I was also recorded as having 33 involuntary movements in one hour.  I want to discuss with the neurologist my two theories for the problems that I have  – a) that the discharges are having a disproportionate impact on my cognition b) I am having seizures but they are happening deep within my brain so they are not being picked up by the EEG. Of course the doctor might say that something else is causing my cognitive problems.  But the scariest prospect of all is that not even Doctor Eventually will know what exactly is going on in my head.

Succot samaech to all those celebrating!!!  May it be a joyous one for you all!!!

5. 7th July 2016 Mental Health Manifesto – part 2

Yesterday I presented the quick cheap ways to make the mental health service better.  Today I present two, more expensive ones.

 

  1. Simplify the mental health system
  2. Train psychiatrists, therapists, social workers and other people involved in mental health services to recognise undiagnosed neurological conditions.

 

  1. Simplify the mental health system

As I explained yesterday under the current system in the NHS in Hertfordshire, and I suspect elsewhere,  a patient with a chronic mental health problem has to see many (in Hertfordshire it can be up to six) mental health professionals before receiving therapy – and patients have to explain their personal story, who they, perhaps, have not explained to anyone else, to each new person.  If you are a happy person this would make your weary.  If you’re a depressed person just dealing with the system could literally send you over the edge.  However, the private system in the UK doesn’t work that and I think the NHS should copy the private system. In my experience if you want to go private this is what happens: – You go to your GP and you tell them that you are depressed.  If s/he thinks that you need more specialist help she will write a referral letter.  You phone up your insurance company and if you have funding in a week’s time you can be sitting in a psychiatrist’s office (obviously if you haven’t got funding your stuffed, but that’s a different matter).  The psychiatrist is the first, and perhaps only, person that will take a detailed account of your history and s/he decides the best course of action to take eg Do you have a particular diagnosis that needs medication eg schizophrenia, bipolar, an anxiety disorder, Do you need therapy?, What sort of therapy?, Is there a therapist who would be a good ‘fit’ to your particular personality and that convenient for you to get to?  How much therapy is required?  Is the situation desperate – should this person go to hospital? If say the psychiatrist prescribed you ten therapy sessions s\he might see you after that period to assess whether you need more therapy/ medication.  It’s just simple – you see one GP, one psychiatrist and one therapist and ideally you should see the same people on an ongoing basis. Of course, it doesn’t mean that people do not suffer, or die.  Conditions are hard to treat, and wrong diagnoses are made (see point two below). But it does mean that the system is easier to understand and there is less chance of people falling through the gaps.

  1. Train mental health professionals to recognise undiagnosed neurological conditions

 

Everyone knows the a story of the boy, who is not doing that well at school, whose behaviour goes off the rails, who has a single mother with a full-time job and two other kids from other relationships.  Although the mother loves her son very much, she has a below average literacy level, and she never does homework with him.  In manhood, this boy can go one of two ways – either to prison or on the bright side – have low paid jobs and on and off anti-depressants for the rest of his life (there is of course a the third possibility – that he find a passion like music, which dramatically increases his self-esteem, and although difficult, he works hard to improve his literacy and ends up having a career in music, a loving family and very much enjoys life).  In either of the first two examples the man goes to see a therapist and at the back of her mind the therapist is asking herself, ‘Why is this man depressed?  What made him this way?  I can see that he had a difficult childhood but I think I am missing something’. The man, of course, has undiagnosed dyslexia. The reason that the therapist is asking herself this question is because she has absolutely no training in recognising dyslexia or for that matter any other neurological condition like ADHD, autistic spectrum disorder (ASD), dyspraxia, and indeed epilepsy.  She is trained primarily to listen and to understand personality traits and how people behave in relationships. And as a mental health professional she is not alone in not being able to recognise these conditions – many psychiatrists, in my experience, are not able to recognise them or think that these conditions occur only in children.  Therefore, although the therapist might be able to treat emotional issues that her patient might have, from other experiences in life, she will never be able to address the underlying cause of her low self-esteem because dyslexia isn’t something she is trained to treat.

Rabbi Tatz argued, (get reference) that depression is caused by a lack of achieving your potential.  That is why I believe I got depressed – I knew I was different from other people – but I didn’t know how and I couldn’t explain it to anyone because I didn’t his is why I believe I got depressed. And I am not alone – people with ADHD, ASD, epilepsy etc are just much more likely to get depressed[1] than other people. But if as I did, they go to a therapist, to treat this illness, they are unable to because it hasn’t been diagnosed and they don’t have the skills required to recognise it – let alone treat it (of course the patient could have of issues that a therapist could help with but there will always be a part of the patient that goes untreated),

Thus I believe that all mental health professionals, including therapists, psychiatrists, social workers and even GPs should be trained to spot these neurological conditions so they can refer patients who they suspect have one onto the appropriate professional and receive the appropriate care.

So that’s it Sharon’s mental health manifesto – part two. It’s expensive – but could be cheap in the long run.

PS Sorry if this blog sounds a bit antsy, but for those of you that don’t know I have been stuck in a big brother room for four days with 27 electrodes on my head being videoed monitored so the docs can see if I am having seizures.  Tomorrow I get out – freedom!

[1] https://www.epilepsy.org.uk/info/depression   https://adaa.org/understanding-anxiety/related-illnesses/other-related-conditions/adult-adhd#   http://www.autism.org.uk/about/health/mental-health.aspx

4. 6th July 2016 – Sharon’s Mental Health Manifesto Part 1

The NHS always talks about patient participation.  I don’t think that someone who is on the verge of ending their life would be asked to rate on a scale of one to ten if they feel listened to by their social worker –   but the intention is clear – those receiving the mental health services should be involved in designing and assessing the care that they receive.  My mother-in-law, Karen Ross, MBE, told me that she always thought that to be ill you need to be well. And she is right.  I have a lot of experience of being within the mental health system but when I was ill (in that way) I just didn’t have the strength to try and understand the health system, to chase medical appointments and also to get angry – but articulate – when the system wasn’t working for me.  But now I am not feeling so depressed (just cognitively inept) and in the spirit of patient participation, I present to you my own mental health manifesto, part one – the cheap one (part two tomorrow is expensive).

When a patient first visits a GP saying they are depressed they should be given two information sheets – one would have a simple organisational flow chart to explain how the mental health system works in their area and another would detail non-NHS resources that they could turn to, in case, as is 100% likely, their referral doesn’t come through as quickly as they would like.

  1. Organisational flow chart –

After three years in the Hertfordshire Partnership University NHS Foundation (ie the Mental Health Trust) system I am now going to try and explain to you the steps a patient has to take on their mental health journey (although some management consultant is probably plotting to change the system as we speak).  Firstly you have trot off to your GP you say ‘I am depressed’ and if the doc thinks you need more than a tablet s/he will refer you to the As One services.  You can also decide to just skip that bit and phone up As One yourselves. As One then make an appointment with you for a short triage session at their specialist centre (ie a call centre). For those of you that don’t know, there are a hell of a lot of depressed people out there today, and even feeling suicidal is not enough to get you mental health care quickly.  You need to feel that you are going to do the deed in the next ten minutes if you want immediate help.  If you only have the S thought once a week the call centre (maned, it has to be said, by trained therapists and the like) put to the back of the queue.  The call centre then assigns you to one of two services – what I call the Critical or Standard service.  If you are assigned to the Critical Service, about six weeks after going to the GP telling him/ her that you desperately wanting to kill yourself you can finally see a psychiatrist.  You tell them your woes and s/he gives you a tablet and also gives you a nice label eg bipolar, borderline personality disorder, generalised anxiety disorder etc. Sometime after that you might get an appointment to see a clinical psychologist who tells you what type of therapy s/her thinks is best for you (but she won’t be able to tell you what the waiting time to see a therapist is like). And eventually after all these shenanigans you are put on a list to see a therapist.  In between all of this you might also be given a social worker to perk you up every now and then.  So are you with me?  That’s six people (and it could be more) that you have to tell your life story to if you are feeling shit.  I think, it’s much better to be a patient in the Standard group because then you have to wait a bit longer to see a psychiatrist but you are just assigned a Cognitive Behavioural Therapist and you can relax a bit and feel less confused.  Don’t get me wrong, most of people that work in the Service are extremely helpful, caring and work very hard in a particular stressful situation.  But I am sure you will agree with me that an organisational flow chart of how the system works would be useful for each patient, preferably with target wait times for each appointment.

NB – If you think that no-one should have to explain their inner soul to seven different people when you are depressed, then I agree with you.  This will take a lot of extra funding and I will discuss this tomorrow.

  1. The second sheet of paper would have a list of four different types of non- NHS resources that are available to so that patients can be signposted to what can literally be life-saving resources if, as is inevitable their referral takes longer than is expected.
  2. i) Specialist mental health charities

We are blessed in this country to have many mental health charities that can provide excellent support  eg Mind (there’s one in Leeming Road, Borehamwood), the Jewish Association of Mental Illness (JAMI) and many others.  GPs should be fully informed about these services and signpost patients to them if it’s appropriate.

  1. ii) Online support groups.

The NHS has an excellent support portal for people suffering with mental health issues – called the BigWhiteWall – but GPs need to be aware of it and advocate for its ability to show patients that they are not alone and that other going through similar troubles can help them. Facebook also has an array of specialist support groups.

iii) Mindfulness resources.

If you read the literature on mindfulness it says that, if practiced regularly, mindfulness can help you find true inner peace and joy. It might not achieve all of your expectations but it can help.  There are lots of mindfulness apps on the internet (free or paid for) as well as face to face groups – and patients should be given details of them when they first go to their GP (Personally I think that the NHS should have its own free mindfulness app for patients but that’s a different story).

  1. iv) Paid for services

It isn’t really controversial to admit that some people pay for services when they know that the NHS isn’t meeting their expectations. And therefore I think that on this piece of paper should be a list of paid-for mental health services eg registered private therapists listed on the British Association for Counselling and Psychotherapy or the UK Council for Psychotherapists search facility.

So that is the first part of my mental health manifesto. When a patient comes to see a GP – give them two pieces of paper (or to cut costs one double sided-piece of paper).  Tomorrow – part two.