It Must Be Mum – Part 2

In Part two Peter’s admission to hospital becomes inevitable – but where do you find a mental health bed for a 9 year old?  Lily’s condition deteriorates and their mum turns to her friends for help, which doesn’t turn out to well.

Click here for Part 1 of ‘It Must Be Mum’ 

Subtle Differences – Chapter 1b

Peter needed admission to hospital and I can remember precisely where I was when, during a phone consultation, his Tier 3 (T3)[1] consultant psychiatrist_ explained this to me.  Never, ever, did I think that he would be admitted to hospital.  Come to think of it, I didn’t even know that paediatric psychiatric wards really existed.  What was worse, it transpired that parents didn’t stay.  Really? The most vulnerable children in the whole of our society are admitted to hospital for weeks on end without their parents? In Britain? In 2014?  To complicate matters, it was becoming obvious that he was developing a significant separation anxiety.  It was incomprehensible.

Apparently, the combination of his complex needs, and these needs remaining unmet when at school, had led to my 9 year old needing to be admitted to a mental health ward. 

I had great difficulty getting my head around the idea of a hospital admission.  However, there was no ward; no beds in the whole of our region so it seemed that for now I didn’t need to.  There were beds for teenagers, yes, but not for 9 year olds.  Phew.  Another solution would be found I was sure and in the meantime I would manage.

Despite the lack of beds for children a referral was made to the T4 adolescent service, for advice, by Peter’s local T3 consultant.   What was happening didn’t seem real and this gave me a massive panic in me.  The phone call triggered the first of many episodes of shaking, dizziness and ‘brain fog’ which were to become frequent events over the next few months.   It was reassuring to know that the service was seamless and that the two psychiatrists communicated so well.  But at the same time….  this must be serious: you only get seen quickly in the NHS if it is serious don’t you?  I just couldn’t get my head around it.

By the time Christmas came it was clear that the Peter we knew was gone and that I had a new Peter, maybe for now, maybe for ever.  No one really knew.  It was like he had had a serious brain injury which had caused physical, mental and emotional damage.  It was as though that night in November he had gone out on a bike and hit his head on a tree – the changes were massive.  Although I had been told why I couldn’t really understand, and he wasn’t getting any better.

A meeting was held at Peter’s school just before the end of term.  His Clinical Psychologist attended.  She fully explained Peter’s presentation, his referral to the T4 services and that he was likely to be admitted to a Paediatric Mental Health (T4) Inpatient Unit.  His clinical team was very concerned for him and were clear that this wasn’t a state that he was going to recover from quickly, if at all.

Time was spent with school staff describing Peter’s difficulties and the level of intervention he would require if he was to have a chance of a decent recovery.  It transpired, they struggled to understand.  

The local T4 service assessed him over Christmas, with a team home visit and two hospital visits.  By the first week in January there had been at least two multidisciplinary discussions by the team that visited us and their colleagues within the T4 adolescent service.   They tried to make a plan for a 9 year old to be admitted.  A lot of effort had been applied to pull together an inpatient, bespoke, children’s assessment within the adolescent unit in this short time and over the Christmas holiday period.

Ok.  So I was slowly getting my head around this whole admission to hospital thing and the T4 CAMHS Psychiatrist was incredible, so I was building my trust in the inpatient services.  It was obvious that Peter would not recover without some more intensive intervention and this hospital was only about half an hour’s drive away.

I was exhausted.

Peter was with me all day and had taken to sleeping at the end of my bed at night.  Lily was now having terrific panic attacks, was utterly convinced her brother was dying and was traumatised by witnessing so many very disordered states in him.  She could only sleep attached to my left arm.  Her teacher was amazing, giving up her breaks to watch out for a rise in anxiety so that she could intervene before the panic overwhelmed her at school.  She was referred to and accepted by CAMHS in December.  Her eczema was taking over her little body, she couldn’t manage her friendships and was often just vacant in lessons.

Early Help[2] were assigned, but in Lily’s own words ‘I don’t think it is the right sort of help mummy’.  Still, she was becoming scared of playtime and the Early Help lady came at playtime and was nice (we thought), so Lily was happy to comply.

By mid December Lily was waking in the night mid panic attack.  These episodes could last for two hours.  She tried writing to the fairies, “Please make my brother better”.

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“Dear Fairy Queen

You have written to me a long tome ago when I was six or the start of seven.  You have written to me about my worries and about two other things.  But what I really want to ask you if you can make my brother better because he has lots of difficulties.  And even if you can not please try.”

screen-shot-2017-02-02-at-18-02-31

School was becoming harder and harder for Lily and her attempts to communicate this with her Head Teacher were heart-breaking.  She wanted her to understand that, after seeing her brother hallucinate and dissociate following some school experiences, some places in school triggered fears in her.  Her Head Teacher did not seem to understand at all.

Caring for the two of them took every ounce of energy I had.  It was bad enough that Peter was so unwell, but that it was having such an impact on Lily was truly awful.  It was all so unnecessary.

At the very beginning of January a decision was reached that Peter would be admitted to the T4 adolescent unit a few miles way.  I was now really very scared for his future and could understand the need for this, as hard as it was.  It had just about got my head around it , but as quickly as the decision was made, it was overturned by the T4 team.  It just wasn’t going to work they felt.  At 9 he was too young and there were about to be a number of new teenagers being admitted to the unit.  Also, he was likely to need to move to a Paediatric (Children’s / under 12 years) bed when one became available.  With his ever more obvious separation difficulties an admission followed by a move, to another hospital, would not be in his best interests.

So, still in the first week of January, he was put on the ‘National Waiting List’ for a paediatric mental health bed.  The nearest Children’s T4 Units are more than 100 miles away.  The NHS Commissioners said they would agree to fund the care but that he must be referred to Children’s Services (Social Services) so that his discharge wouldn’t be delayed if further support was required.

A while later, a potential bed was found and a doctor and a nurse travelled 150 miles to our home to assess Peter; the third team to assess him in two months.  More people to explain things to.

I felt as though it all rested on me to explain the long and detailed history, and confusing current presentation, over and over and over.  It was never easy to describe and it was emotionally tough.  I felt like a scratched record, I was explaining stuff repeatedly and I felt as though I wasn’t actually achieving anything.  Peter was the same and there were no complete explanations as to why.  I felt responsible for describing things that were just too difficult to explain and that if I got it wrong, then Peter’s chances of getting the treatment he needed would be blown. 

The doctor said that she would discuss him at the hospital multidisciplinary team meeting the following week and get back to me.  By now admission seemed necessary but not real.

………………………………………………………………..

By the time that we were three months into Peter’s new presentation, it occurred to me that only a few of my friends knew what was going on for us.  Just those who lived locally and those that we had regular contact with.  I felt that I needed to let people know, but with the benefit of hindsight I can see that perhaps I could have managed the situation a little better.

I decided to set up a private group chat on social media so that I could let people close to me know without repeating everything.  Explaining it all was exhausting and painful to do.

What I discovered was that in addition to everything else I now had to deal with the raw emotions of some of my friends.  Because they were my friends and because they cared about Peter.  The information came as a complete shock to them.  On reflection I can see that of course it would!

My friends were concerned that I was letting ‘them’ give Peter drugs that would harm, not help, him.  Also, they were utterly bewildered that a child with massive and growing separation difficulties would be admitted to hospital without his Mum.

I had been through a process of adapting to and processing the difficult situations and medical recommendations over months.  Even so, individually, each one had had a big impact and required recovery time.  In particular, his permanent disturbed states, the conversation about the ‘heavy duty drugs’ and especially that conversation about his potential admission to hospital, which had completely derailed me.

Some of my friends got all of this in one go!  I was asking for trouble but I was also trying so hard to get everything right.

The backlash felt awful.

Some friends walked away for a while.  I felt that I was haemorrhaging friends at a time when I needed them more than ever.  I wasn’t really but it did feel this way at the time.  I should have perhaps talked to everyone individually and fed them the information in stages but I really, really didn’t have the energy.

I hope that you will continue reading this story  – Part three is here.

[1] CAMHS (Child and Adolescent Mental Health Services) come in four tiers.  See here for more: https://itmustbemum.files.wordpress.com/2017/01/the-4-tiers-to-child-and-adolescent-mental-health-services.pdf

[2] ‘Early Help’ assigned Lily an Early Intervention Family Support Worker who spent time with her at school to help her think about things that worried her.

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