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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.

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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.

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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.

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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.

 

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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

 

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1. July 1st 2016 – epilepsy and me

My eight year old daughter, Gabriella, had choreographed a dance routine with her friend for her school show, ‘Year 3’s got talent’.  They had rehearsed at every available opportunity – at break-time, during playdates and at home by themselves.  They had chosen their own music, decided what they were going to wear and how they were going to do their hair.  I was very proud.  I was more than proud. Gabriella had worked together with a friend in a dedicated way to create something original.  But as I sat there waiting for the show to begin I knew that I wasn’t going to view the dance routine in the same way as the other parents.  Throughout the routine I was asking myself, ‘What aspect of the dance should I be looking at?’, ‘How do I tell whether this part of the dance routine is good or not?’, ‘Is it in time?’, ‘Should I be looking at my daughter’s friend now or should I be looking at my daughter?’  I knew that there was nothing I could do to answer these questions. My mind is a permanent fog.  And then before I knew it – quite literally – the dance had finished.  The mother of Gabriella’s friend had already got up and congratulated her daughter with a cuddle.  I was slow on the uptake and another mother congratulated my daughter before me (not that I blame the other mother – I was slow). ‘Thank G-d I am going to hospital,’ I thought, ‘so that the doctors can understand what is happening with my brain’.  The experience of watching the show was simply too painful for me and I desperately wanted to sort it out.

So here I am at the epilepsy hospital so that they can carry out an intensive assessment.  The theory is that I might be having lots of seizures, where I lose consciousness for a second or two, and I am not even aware of them. This is the hidden face of epilepsy.  As I am learning epilepsy isn’t just about having very obvious clonic tonic seizures which look dreadful, and can cause those having one to injury themselves.  It is also about small millisecond seizures that the person having them might not be aware of.  It is also what happens in between seizures – the epileptiform activity and how that impacts on cognitive function.  This epileptiform activity certainly seems to be impacting on mine – for example I mostly don’t process information (eg my three year old had decided to take off her wet nappy – I also saw that next to the nappy was a pool of water but I didn’t connect the two pieces of information – I didn’t think that the water was urine I thought that it was water), and my memory is very poor (eg if my husband talks about our holiday last year I can remember the fact that we went on holiday but the name of the resort or the details of a particularly day trip that we went on escape me).  But when talking to me no-one would know the difficulties I am facing every minute of the day – indeed this is the hidden face of all mental health illnesses because although I am in immense pain no one (apart from you because I have explained it to you) knows.

However, you will be pleased to know that I am doing 100% better than I was last year when I watched my four year old son perform the Gruffalo show at nursery.  My cognitive function was just as impaired then but I didn’t know that this was the problem.  ‘Why does this show feel boring?’ I asked myself.  ‘I just don’t want to be here’ ‘All the other mums seem to really enjoy watching their child in the show – why can’t I?’ ‘Why am I always like this?’ ‘Oh I think I will just go home and kill myself’.

So starting on Monday, I am going to be in a hospital room for five days and I will not be allowed to come out of it.  I will be wearing sensors attached to my head to measure brain activity, using an EEG, and I will be videoed from all angles.  The idea is that doctors will be able to spot on the video when I am having seizures and measure my brain activity at that point.  And, please G-d, on the basis of those results they will be able to make recommendations as to how to treat my epilepsy.

I will try and write a blog every day – I will be seriously bored (but of course the news is always a drama to watch these days, what with Brexit, the British elections, general political turmoil and of course there is always Wimbledon).  But just to let you know that I might not because I might forget to write.

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