13. 11th September 2016 – Parenting theories

Over the break I have carried out some extensive research into parenting theories and have come up with my top three which I would like to share with you.  The aim of this process is to discover which theory would be most useful for me to use at the moment, whilst I am going through this difficult time (NB If you decide to plagiarise this blog for an academic essay in psychology or sociology you will almost certainly fail).

Theory one – children are resilient.  Many people are telling me this one at the moment, whilst secretly being grateful that their children have a relatively ‘normal’ life. However having observed the resiliency theory in real life with my own children – there does seem to be a lot of truth to this. Children have no previous experience to fall back on so they just get up and get on with it because it all seems normal.  My children have accepted that when mum sees a bruise on their leg, she might ask them where they got it from – even though she saw them fall over and attended to the incident last week.  It is normal for them.  They cope and they just get on with the various odd things that happen around them.  Still resilience theory doesn’t really resonate with me. It seems to suggest that it’s ok to make things bad for your children because they are resilient so it doesn’t really matter anyway.

Theory two – a classical psychological interpretation – This theory states that parents screw up their children and then the children spend the rest of their lives trying to undo the damage.  This theory was propagated by Freud, Jung, Piaget, Vygotsky and the like who believed that in these formative years a child’s cognitive and emotional development is established for the rest of their life. Oh dear, I think.  This is not good.  I thought children were supposed to be resilient and what I did didn’t really matter.  It looks like my children will spend years in therapy.

As a sub-theory to this theory is the one that says – if a mother is happy then a child is happy.  For my second pregnancy I was depressed almost throughout.  And if being depressed wasn’t bad enough the whole time I was thinking ‘My unborn child is picking up all my vibes and is going to be depressed their whole life.  How can I un-depress myself?   I am a crap mum before I have even started – what chance is there for my child?’ (I later miscarried, but that’s beside the point). And what about the one in ten mums who suffer from post-natal depression – surely all of their kids aren’t screwed up?  But there must be some truth in Freud et al’s theory – my children are not oblivious to my strange behaviour and my eldest can remember when I was chronically depressed.  There must be an impact – it must shape how they make sense of the world – but does it all have to be negative and does that impact have to last a lifetime.  What happens if some miracle happens and I get better – will my kids still be screwed up because there were some difficult years?

And then there is theory three – All a parent can do is try their best.  This is the theory I am going with for now.  I always thought it was a pretty odd theory – how do I know if I am trying my best? (Does an athlete only try their hardest when they score a personal best?).  However, I have come to understand that I am trying my best.  For me making a dinner for three kids is hard work (lots of decision making, planning, use of memory etc) – sometimes the kids have had the same meal more than once a week, often they don’t get veg and the kids only generally get a drink if they ask for one.  But I know 100% I am trying my best.  And if the kids end up in therapy in years to come, I will know that I tried my hardest for them and that life if complex and even though I tried my best it doesn’t always mean that my kids will have the future that I want for them – ie good mental health, a strong sense of self, to be a mensch (a good person who helps others) after all what else is important?

————–

Exciting News:  My poor suffering husband (and Boris Johnson) were right – if desperate write to your MP.  My MP Oliver Dowden wrote, on his House of Commons embossed-letter-headed paper to the specialist doctor that I want to see and told him I was feeling a bit desperate and the very busy doctor has now mysteriously found space is his diary for me in two weeks time (I would like a pad of Mr Dowden’s paper.).  The natrupathic medicine is not making a difference but this week I am going to add Lithium to see if that has an impact.

12. 21st August 2016 – On Tests

For the majority of people the tests that they do at school are the easiest they will ever experience.  Real tests are much harder – they are not something a person agrees to enter, there is no preparation and, seemingly, they are not something that they have a natural aptitude for.

There is an advert for a cancer charity on tv at the moment that says that ‘Cancer is the biggest test that anyone will probably every face’ – I’m not so sure.  Surely the test comes afterwards to the husband who has to raise his children by himself and try to explain to his children why the world is still beautiful.  And what about the test of a daughter of a high-achieving mother who has to find her own niche and come to feel proud of the person she is. Or 21 year old, whose father was an alcoholic and whose mother was not around much, who, aged 24, for the first time in his life gets a job (as a carpenter’s apprentice).  These are the real tests of life – everyone faces them – they don’t have to be dramatic or grand but they are true stories of tests of strength of character, courage and determination.

As I reflect on my life to-date I now see that I have had big challenges that I wasn’t even aware of as I was going through them.  I’ve had chronic depression, feeling suicidal all day long, feelings of worthlessness and I’ve had to really figure out, with the help of others, why it is that I feel that way.  But perhaps the biggest test is in-front of me – to find a resolution to my pain.

So I need to look for role models for those that have achieved great things to enable me to aim high and stay on track. With Rio 2016 coming to a close the Olympians are an obvious choice as role models who take seemingly impossible tests.  However, I wouldn’t choose my Olympian role models because they have won gold (although in contradiction to what I just said one of them did) but because of the challenges that they faced in getting towards the competition. My role models are Michael Phelps and the whole of the IOC Refugee team – a team as the name implies of athletes going through heartache and trauma[1] .  Michael Phelps, the American Olympic gold medallist swimmer, has ADHD, had trouble with inattention and couldn’t sit still in class.  His teacher once told him that he would ‘never be able to focus on anything’[2].  But he did – presumably with a lot of bumps along on the way – but he did it anyway. And everyone in the IOC Refugee team is a winner as far as I am concerned.  Each has their own story of trauma and heartache but yet each has somehow ‘miraculously’ survived to give others a sense of hope. They are role models because of their back story and although their achievement is amazing it is where they have come from which makes them inspirational.

But actually, for a true Test Taker role model I am looking for more than that – I am looking for the way in which they approached their test and for that my models are Abraham (together with Sarah), Ghandi and Mandela.

Even before the stopwatch was invented Abraham undertook ten tests. As an example – he was told by G-d to get up and leave his home and go to a place he had never heard of. Now this isn’t – at first they were asked to go, they thought about it for a bit, then they got used to the idea, and then they did a bit of research and thought about how they would earn a living and then decided that they would take the challenge.  This is one day being asked to leave everything you had ever known and (in a social media/ plane/ media  free world) get up and going because you were asked to.  Like all biblical characters, Abraham was by no means perfect, but upon his enormous tests he didn’t have a nervous breakdown in the middle and say that he was giving up and he was going to go back home and that he just couldn’t cope.  He had faith that things were happening for the best and he didn’t question it.

The only two other people I can think of who are like this are Nelson Mandela and Mahatma Gandhi.  They both had huge tests in their life (maybe not ten, but they were huge nevertheless) , they weren’t perfect, but they managed to achieve their goals with dignity, courage and grace (I would tell you more about their lives – I have read both of their autobiographies, but I can’t remember a thing).

I know that in this horrible test that I am facing I am not approaching it in even a tenth of a fingertips of Avraham’s, Mandela’s or Ghandi’s way.  Or even those Phelps and the refugee IOC team. I may go on about gratitude and miracles but I wobble, fall down, get up, whinge and then fall down again day after day.  But people like Avraham, Sarah, Mandela and Ghandi will always be the people that I, and many others, shall look up to because in their tests of life they persevered and came through stronger and wiser.

In other news: You guessed it – the reason I am withering on again about nothing is because there isn’t much news (isn’t life so often ‘nothing happening, nothing happening, something, nothing happening, nothing happening etc). After the ‘It’s not what who know but who you know’ approach failed because this doctor did not want to see me, I tried the Boris Johnson (our very quirky and quite funny Foreign Minister) approach in the hope that I could see my October doctor sooner.  Boris Johnson said, ‘The dreadful truth is that when people come to see their MP they have run out of better ideas’ so I wrote to my MP and asked him if I could see my October doctor earlier and he said something like  ‘I will do what I can do but this decision is out of my jurisdiction’.  I have however finally got the naturopath’s medication.  It tastes like nail varnish!! But I don’t know about how it impacts upon me as yet.  I’ll just have to try it out and see what happens. Also, just to let you know that I’m not going to be writing for the next two weeks.  Unfortunately my mind travels with me when I travel, but other than that I’m sure I will have a good time.  Hope you have a good break whilst I am away xx

[1] https://www.olympic.org/news/refugee-olympic-team

[2] https://www.understood.org/en/learning-attention-issues/personal-stories/famous-people/celebrity-spotlight-how-michael-phelps-adhd-helped-him-make-olympic-history

11. 12th August 2016 On Miracles

On miracles

So the miracle that I wanted to happen didn’t happen – I didn’t get to see the doctor I wanted to see  and, rather grudgingly, I have to accept that G-d works in mysterious ways, of which I am never going to understand.

However,  another very important miracle did happen to me this week and whilst thinking about miracles I have concluded that there are three reactions that people, including myself,  have towards them (I calls these ‘attitudes to gratitude’).  The first is the Ferrari type reaction. And this was the reaction I had to my miracle this week. My miracle was this – my daughter got potty trained.  Let’s face it with my organisational skills and the memory of a goldfish potty training was never going to happen.  But my daughter was ready and all she really needed was a little bit of help.  So piff puff poof – the miracle happened and someone I didn’t know well (and not someone who knew my problems) , but who was looking after her,  was offered to train her.  Now miracles don’t just happen by themselves – the sea would not have split unless Moses had actually got there – I had to find this person and this person and this person had to offer.  So I thank G-d, from the bottom of my heart, that together Her help, my help and the stranger’s help my daughter has now  been potty trained.

The second attitude to gratitude is this:- thanking without thinking.  A lot of people do this – whether they are religious or not eg they say ‘My father recovered from his operation, thank G-d’ ‘My daughter is going to get married, thank G-d’ ‘It’s a miracle that you ever got here considering the traffic was so bad’.  In Judaism there are plenty of opportunities to thank without thinking – you can say a prayer before and after you eat food, a prayer after seeing a rainbow, a prayer when you wake up and before you go to sleep and another most excruciatingly after you go to the toilet (NB – you are not allowed to say it in the toilet – you have to come outside and then tell everyone, by the fact that you are whispering the rather long prayer , that you have done a number one or number two). But for me most of the time (and I’m sure for a lot of other people) these types of thank yous are superficial – they are just a tone of phrase. It’s like saying thank you to your mum for making you a cup of tea – you don’t really mean ‘Thank you mum. You have gone to an awful lot of effort – firstly you thought to ask me if I was thirsty then you switched on the kettle and got out the mug that I like, the teabag, the milk and the sugar  etc etc’ .Thanking without thinking is often just being polite.

And then there is the third attitude to gratitude – Nothing. It’s as if I didn’t say thank you for the tea my mum made or I didn’t think how ‘lucky’ I was that my daughter got potty trained. Even if I didn’t believe in G-d, surely it is polite just to be thankful for something inconsequential or very important, to give me a sense that I am not in control of everything and something else has given me a good turn.

In noticing these three attitudes I realise that the preferred option is Ferrari – to be genuinely grateful for seemingly inconsequential (ie to come out of the toilet and to be genuinely grateful for the ability to function as you have and to meaningful say a prayer or a little thank you to the Power that Exists in the World) and larger acts (that my daughter has been potty trained).  However, thanking without thinking, to some extent does the trick but not being grateful ever for absolutely anything is probably going to make you miserable your whole life. So even in my wholly unpleasant situation, I am trying to have the Ferrari attitude to gratitude.  It keeps me going in difficult times.

In other news – there isn’t much I am afraid.  I was hopeful that the ‘It isn’t what you know but who you know’ approach might work, since someone I knew, knew someone else who knew someone else who was very important in the world of epilepsy.  However all that person can do is refer me to the person that I already have an appointment with in mid-October.  This October doctor is apparently the only person in the country that can help me (if anyone knows anyone who knows anyone who knows someone who knows about cognition/ executive functioning and epilepsy/ neurological diseases in this country or abroad please let me know).  So whilst I am waiting for my appointment and if I get my act together I am going to go to a naturopathic pharmacy and get the ‘medication’ that the naturopathic doctor has prescribed for me and see if that helps me.

———–

And for those observing Tisha B’av a little story – My son wants to be a builder when he grows up.  His biggest ambition is to repair the Western Wall because it has holes in it, where people put their ‘wishes’. He is very sad about the fact that it is broken.  My son is hoping that with his skills, and G-d’s help it will be rebuilt speedily within his days.

https://knightstemplarinternational.com/2017/10/miracles/

 

9. 31st July – Benefits assessment

A middle class woman goes to have an assessment for benefits because she has an invisible illness condition. I guess this happens every day – but it is rarely talked about it.

For those of you that don’t know, if you are ill and can’t work you are entitled to Employment and Support Allowance (ESA),  if you are not receiving statutory sick pay the state won’t just take your GP’s word for it and ask you to attend a ‘full medical assessment’[1].

So after an hour and a half wait (they call it ‘overbooking’ – I call it ‘over-overbooking’) I entered the assessment room and was greeted by a doctor – the assessor. The most important thing in the room was the computer. I felt sorry for the doctor and he felt sorry for me. He felt sorry for me because he could tell I was genuine and that I would rather be working than claiming benefits. I felt sorry for him because his job seemed extraordinarily demeaning. Previously, I learnt, my assessor had been an orthopaedic surgeon, but his eyes started to fail him and so he lost his confidence and changed jobs.  As far as I could see, his job involved reading medical notes, asking a list of questions from a computer and doing some very basic health tests (eg ‘Please can you read the letters on the board’, ‘I want to assess your cognitive function – what is 90 takeaway 7?’).  He also wrote a report. However, I felt the most demeaning part of his job was the fact that, at the end of the interview the surgeon, who presumably had a make a few decisions in his previous career, was not deemed suitably qualified to make a decision on whether I was fit to work and therefore could claim ESA.  That decision would go to a bureaucrat called a Decision Maker. As you know I can’t think straight, so the following day I asked myself silly questions like ‘Why can’t a doctor-assessor ask his own originally crafted questions and then make a Decision on whether the ‘customer’ is able to work? ‘Why eas an ex-orthopaedic surgeon asked to asses somone with epilepsy/ mental health problems? Surely there should be ‘mental health assessors’ and ‘specialist orthopaedic symptoms assessors’ and so forth who can specialise in assessing particular health conditions?’. Was a this very nice doctor the best person to assess me? I am obviously too stupid to answer these questions and so I must accept the rather peculiar reality of the cognitively adept world.

———————–

Yesterday I saw a man, dressed in a pink skirt, so short and childlike that it was probably meant for an eight year old and a top that, me being me, I cannot remember the colour of – walking down the high street.  And I felt a huge connection to him – I thought to myself – ‘Isn’t it great, that in this modern age we can so freely express ourselves.’  Even ten years ago that man would probably not have felt comfortable enough to walk down the road such as he was – transsexuals were simply hidden from view and rarely spoken about.  But in our open society it is possible, and in some areas – even acceptable, to dress openly in this way without being lynched.  And today I can express myself through a blog, telling family and friends how if feel because they could not see it if they just looked at me.  Ten years ago only newbies to the tec world would have written a blog and it was certainly not acceptable to write so freely and openly about mental health issues.  So I am grateful that the modern age allows me, and this man that I do not know, to be able to express ourselves in the way that we want to.

————————-

In other news – I am still waiting upon my neuropsychiatrist getting a second opinion.  He is going to be away for much of August, so it is a waiting game.  I have found research that says that epileptiform activity (which is what I have) can have a large impact on cognitive function even if the patient does not have seizures.

The result of my hair test has come in!!!! I had a phone call with the naturopath who explained to me what my hair test said. I can’t remember the details –there was something about a lack of cobalt and lithium (and yes I did try to write down what she said  – but I have lost the notepad and, in any case, the notes don’t make much sense).  She has got to check that there are no interactions with my antiepileptic medication and will get back to me with a detailed email explaining what minerals and supplements I need to take.

Next week I attend a Personal Independence Payment Assessment (the old Disability Living Allowance) interview – lucky me!!!!

[1] See https://www.gov.uk/employment-support-allowance/eligibility for more information

7. 18th July 2016 -Mothering whilst ill

I am not the mother I want to be, but I know that I am not alone in thinking this.

As an example of my unmotherliness, I will explain to you what happens when my children come home from school. My eight year old says, ‘I want to watch tv – where is the remote control?’  Me: Spend 20 minutes trying to find it – I feel guilty because I probably lost it. Think to self, ‘I need to make dinner.  What shall I make?  Don’t know’.  ‘What would you like for dinner?’ I ask my five year old, ‘Pasta with tuna,’ he says.  Think to self, ‘Good plan – we have plenty of time to make that.  I will go and put washing on first because I haven’t done that today.’  Go upstairs to get washing. Think to self, ‘What am I doing upstairs?’ Not sure.  See three year old taking all the wipes out of the packet. ‘Why are you making a mess? Let’s go downstairs’. Take daughter downstairs and when at the bottom think to self, ‘I forgot the washing. I will go and get it.’ Go upstairs to get washing.  Me to self, ‘Must make dinner.’  My son says, ‘I am hungry!!’  Me: Feeling guilty that I still haven’t started making dinner,  ‘Have a yoghurt’, I say (only latterly so I realise that this will mean that he will not be hungry for dinner).  Put pasta on – Not sure how much to put in saucepan so use half the packet. Put washing in the machine. Fifteen minutes later pasta is overcooked and I call children in. Elder daughter starts to put mayonnaise in tuna because she likes it with a very specific amount of mayonnaise which I don’t understand. ‘Need to clear breakfast counter,’ I think – children cannot eat from it with that much mess. My son says, ‘I will get the glasses,’ (this is his favourite job). Me to self, ‘What do I need to do now? Oh yes get – Knives AND forks and serve youngest two good on plates which will fit their meal.’ And so it goes on.

So for all of you whose meal times don’t look like this – Kol akovod (well done) – I am in awe of you (and before you suggest it – writing a list of the 25 things that need  to be done when the kids get back from school does not help).  You have the gift of memory, processing and strategic thinking.  It turns out, I realise now, that strategic thinking is not just something that management consultants do.  Almost everyone does strategic thinking as a result of processing the information around them. It helps them to be organised and make on-the-spot decisions about inconsequential things.  If you can’t strategically think and your IQ is at reasonable level – life sucks.

So I am not the mother I want to be – I want to be present with my children, to feel that in–the-moment connection, I want to be a strategic thinker who understands what is best for my children and am able to prioritise their individual needs. I want to be the solid rock that they can count on to help them along their way. But right now I can’t be that person. Neurologically it is not possible.

However, as I said, I am sure I am not alone in not being the mother I want to be.  There are probably millions of other mothers who are in my position but they just don’t announce it on Facebook! (a very silly thing to do!!!).  So for all those who are going through a tough time – whether you are, bipolar, an alcoholic, having an acrimonious divorce or have cancer –  but-really do want to be a good mother (or father), here is a list of the benefits your children can get from your imperfect situation.  Your children:

  1. Have a much better sense that life can sometimes be hard and is not always the way they want it to be.
  2. Might have to fend for themselves a little bit more than other kids. If they really want something they have to go get it themselves otherwise it might not happen.
  3. They learn sometimes they don’t get what they ask for and that is OK

And in my case, which might not, unfortunately, apply to everyone, they also:

  1. Realise that if you are open about your problems other people often show kindness

Obviously if you are going through a difficult and trying time and think this list is a load of crap then I totally get it. But if you liked the list, I’m glad it helped you.

NB I made two factual errors in last week’s blog which I would like to correct.

  1. Firstly I said that 300 people had looked at my blog. However, due to me being confused 100% of the time I got the number wrong. Nevertheless, the data implies that most of the people I know are aware of my problems.   That’s the way it should be because if I had a physical problems most of my friends would know about it.
  2. Sadly, FedEx are not taking my hair sample to Germany – it was too expensive. The idea of a man coming to pick up my hair in a white envelope and taking it all the way to Germany to be analysed for deficiencies in mineral and vitamins sounded very romantic but it was not to be. However, through Royal Mail tracking services, I can now inform you that my hair sample took the late night flight from Heathrow and is now somewhere in Germany awaiting to be taken to Hersbruck.

 

6. 11th July 2016 – The conclusion is not what I wanted

And so the plot has a slight twist.  The neurologist came round on Friday morning and said to me (more or less), ‘I looked at the computer to see what was in your head and the computer said ‘no’.  It said ‘No we don’t know what causes your problems – it’s not epilepsy.  So you are going to have to sort it out yourself.’ .’I said, ‘What?’ and she said, ‘Well it’s like this I’m a neurologist. I deal with epilepsy and I the data that we have taken from you this week says that although you are having some epileptic activity it’s not enough to make you feel the way you say you are feeling.  So really it’s not my business anymore.  Go back to your GP and see if she can refer to you to someone else.’  As in all cases like this it wasn’t the computer that I was angry with, it was the person operating it.

And so people have told me –  the result is good – ‘At least you have ruled something out – your epilepsy isn’t the cause of your problems’.  ‘Ok’, I think to myself.  ‘But I have a lot of problems.  I really wanted to rule something in’.  ‘Well then at least you don’t have to have brain surgery,’ they say. But the person with epilepsy knows that medication only helps 70% of people with the condition.  The other 30% are a bit desperate and would try anything, including brain surgery, if they thought it would help them.

Others say – there is Hope.  And honestly, I really do believe in G-d.  I don’t believe there is another way to explain everything.  But really when the going gets tough it is hard to believe.  I want to believe, but it’s hard.

The third thing that people say is ‘Look for the positives’.  This I usually think is a pile of crap because how can you look for something positive if you don’t know what you are looking for.   But in this instance I have found two positives.  Firstly, I met some really good people in Chalfonts.  I have found, over the years, that people who are going through a really tough time are some of the most real and beautiful people I have ever met. And when you are going through a tough time it helps to be near like-minded souls.  It doesn’t need to be a structured therapy session – just having a chat with someone that knows is just really good. And it was good to speak to these people (when I wasn’t stuck in a room) and understand their journeys and to share their pain.

Secondly I have found writing.  I like writing.  I have also had good feedback.  And according to the stats 300 people have read my blogs. I don’t know quite how, or if this is even accurate, but that’s what the stats say. Anyway, writing is therapeutic for me. That’s why there is a new type of mental health recovery programme which implies that if you start up a new hobby you’ll feel better.  If you were raped as a child, you are not going to find art and all of a sudden feel great again.  But I guess what they mean is the art helps ease the pain and improves self-esteem whilst time (or medication or therapy) heals the mind.

So tomorrow, like some weird detective story, I am going to cut a piece of my hair and put it in a white envelope and then a Fedex guy will come and take it to Germany.  This piece of hair is going to get analysed by a German or an Israeli doctor and hopefully they will give me a plan going forward.  It’s an ‘alternative way’ recommended by a friend. But it makes sense because apparently there is more information in your hair about the way you are operating than there is in your blood.

But I am also going to get a second opinion – One of the more helpful doctors from Chalfonts is also going to speak to my doctor in London to see if they can come up with anything new. The last option I have been offered is Cognitive Remediation therapy.  I don’t like the last option. This is a therapy that they give to people with brain damage to see if they can find strategies to work around their problems.

I will let you know what happens.

 

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.

3. 5th july 2016 – An introduction to epilepsy by someone who has epilepsy (ie not a medic or some random person who happens be writing for an internet site).

There are over forty different types of seizures.  The most famous one is the grand mal.  Like the T-rex, it is hard to miss – the sufferer screams, makes very strange movements, and falls to the floor and in doing so sometimes injures themselves eg break their back.  They also lose their memory before and after the incident (for a better description ask my husband, Michael, or my daughter, Gabriella, who have seen me have four).

Let me introduce you two of the less famous ones. Firstly, the partial complex seizure which I saw on Shabbat.  I was enjoying watching Pretty Woman when suddenly I noticed the patient (ie a friend) next to me was having a partial complex seizure – she was sitting perfectly upright but her face had gone all floppy and when you looked at her eyes it was if, her nefesh, her soul, had been removed.  There was nothing there.  She was totally vacant.  Twenty minutes later it was as if nothing had happened – but she couldn’t remember the whole thing.

And then there are absences or ‘petit mal’.  I have absences.  Blink and you will miss them.  Although some people have them for three or four seconds, mine, are less than that. As a child it was taken for day-dreaming.  Whatever type of seizure you have the whole process screws up your brain and can leave you feeling exhausted.

————

I have noticed lately that I don’t do something called metacognition eg Another mother at the school bus stop said to me last week ‘The bus has been very late this week.’ And I thought ‘How do you know that?’  This involves lots of brain processing eg first of all you have to remember if the bus was late yesterday (I simply cannot remember) and then you have to recall the day before that and the day before that and then hey presto some algorithm is pressed upstairs and out comes the answer – the bus has been very late this week.  ‘Gosh’, I bet the other mother would say to me if she was reading this ‘I never even realised that I was doing that’.  And my response would be ‘I also find the neuropsychological mechanisms of the brain fascinating but, for me, this isn’t academics.  This is a painful existence.

My middle son doesn’t like to say the shema prayer before he goes to bed – he finds it boring.  So I ask him to say one thing that he is grateful to hashem for and put in one request. Tonight I am grateful to the nurse who gave me blue tak so I could put the ‘Mummy get well soon’ poster that my elder daughter had drawn on the wall.  It means I can see it all the time and I am very appreciative of the nurse’s simple act.  So, as a suggestion, you, the reader, might decide to be grateful for your metacognitive ability, because living without it isn’t fun.  And my request to Her will be to give guidance to the doctors at the hospital so that they can help me on my journey.

2. 4th July 2016 – Do we really have free will?

2 July 2016 – Do we really have free will / A note on staying in hospital on Shabbat

I like to think that my eldest daughter (aged 8) is mature for her age.  ‘You know sometimes’, she said to me the other day, ‘it seems to me that you just don’t think before you do things’. ‘Yes, I know’, I said ‘that’s why I am going to hospital, so the doctors can find out why that is’.  After all if when I take the drying out of the machine and some of it falls into the pile of dirty washing on the floor and then I wash both clean and dirty clothes in a new cycle and I do this time after time after time, it does look like I am not thinking.  ‘But everyone has control over their thoughts, don’t they mummy?’ she said and I said, ‘I’m not so sure’ and she went away slightly perplexed.  And even for an adult understanding that the truth is we don’t have as much free will over our thoughts and actions as we would like to think is disturbing.  I once met a woman who was beaten up by her husband whilst she was pregnant but she still went back to him.  I also met a man, suffering from obsessive compulsive disorder, previously he was studying to be a doctor, he had a wife and children who he obviously loved very much, but he fervently believed that asbestos was everywhere and couldn’t cuddle them and so slept on the floor – such was his anxiety that asbestos being could be on his bed or on his wife or children (he scrupulously cleaned the floor so he could sleep on it).  Surely if they had enough free will the woman would have left her husband and the man would get back into his bed and study to be a doctor.  Logically they knew that what they were doing didn’t make sense. But they didn’t have as much free will as they would have liked and they certainly couldn’t pull themselves together or snap right out of it – just like I can’t snap right out of my mental state.

 

Samuel Landau, a rabbi, wrote an article about neuroscience in the Jewish Chronicle a few weeks ago.  Drawing from Rabbi Dessler he argued that we are all at different points on some sort of neuropsychological ladder or axis and we can use our internal resources (and maybe some drugs and whatever other help we need) to ascend or descend it. But we should remember that we are all at a different point to begin with.

Thus for some people it is genuinely harder to pass that exam, to speak kindly about other people or to not take advantage of those weaker than themselves. And for me, I start at a place of impaired cognition and I realise that life has been genuinely more difficult for me than it has for some others.  And sometimes, even trying harder, has not worked. But we all start in different places and I, as many people do, will be trying to use the internal resources that I have to ascend this ladder.

 

———————-

 

A note about staying in hospital on Shabbat:

 

As an observant Jew on Shabbat I cannot use electricity or my mobile phone, use light switches and there is an endless list of other things as well (eg no harvesting of crops). We also have special rituals like women lighting candles to bring in shabbat and saying special prayers over wine. So it has just been Shabbat and over this period I have, more or less I kept to those things.  It was very tempting not to use the electric button to put the hospital bed in a more upright position, but I did not.  However, I am not a saint and I did watch Pretty Woman in the lounge because it was already on and there wasn’t much else to do (strictly speaking this is OK because I didn’t turn on the tv but it isn’t what we would call ‘in the spirit of Shabbat’).  However the main difference about Shabbat in hospital and Shabbat at home is that in hospital it does not have the same qualitative feel, the same awareness that you have put all things aside and are dedicated to spending time with your family and friends, reconnecting and refreshing (although obviously if you feel like complete shit whether at home or in hospital you are still going to feel like complete shit on Shabbat – it isn’t a miracle cure).  The saddest thing for me was that I was unable to light candles.  The hospital were not keen on the idea(!!!) so I asked a rabbi what I could do instead and he said I could switch on an effervescent lamp and say the blessing on that. I did this but of course it wasn’t the same.  Until tomorrow xx

 

To receive updates of my blogs please go to https://www.facebook.com/groups/371346339966284/