It Must Be Mum – Part 3

Peter is admitted to hospital 150 miles from home and has his 10th birthday there.  He undergoes the first six week of his assessment admission and recommendations about his future needs are made by the hospital team.  Some school staff continue to insist that he is ‘fine’ and their unconscious incompetence reaches an all time high……

Earlier parts of the book can be found here.  

Spinning Heads – Chapter 2a

On February the 12th 2015 I dropped Lily off at school and took Peter to be admitted to hospital.  This was to be the first of very many 150 mile journeys to the first T4 CAMHS Unit that had a bed for Peter.  I spent the next three days residing in the ‘family flat’, beside the ward that Peter had been admitted to.

Those three days were spent explaining Peter’s history and current presentation to a doctor we hadn’t met before and who moved to another position a week or so later.  He was nice but I came to the conclusion that he wanted to fill in the boxes on his form, not actually gather information.  There was a subtle but significant difference.  If he really wanted the information, he would have contacted Peter’s Clinical Psychologist (I repeatedly offered the number).  She could have answered a number of questions that I just couldn’t.  My guesses filled his boxes instead.

After three nights in the family flat I went home for 48 hours.  I needed to meet the social worker assigned to us and to prepare for Peter’s 10th birthday.  After a hectic and sleepless 48 hours I travelled back to the hospital with Lily, so we could celebrate Peter’s birthday together.

I cannot begin to describe the layers of exhaustion.  Whilst there for the birthday visit I was asked to return to the hospital again three days later to bring him home for the weekend.  Incredulous, exhausted and desperate to comply, I felt I could do nothing but agree.  That first home visit was only 10 days after his admission and, as it turned out, it was too soon for Peter.

He couldn’t manage and asked to be taken back to the ward early.  That, in itself, brought on such a powerful mix of emotions.  It was heart-breaking that he needed something that couldn’t be provided at home.  That, to feel settled, he needed to be in quite an extreme environment, where there are about four locked doors between his bedroom and the dining room and an adult sat on a chair outside of his room all night.  It was, however, a huge relief that at last he was in an environment which we both felt was helping him.  That conflict of emotion added yet another dimension to the exhaustion.

During this 10 day period alone I drove about 1200 miles.  Each of the 6 journeys took between 3 and 5 hours.  On the fourth return trip I drove for 5 hours, dropped Peter and his bags in his room and got back in the car to do the whole journey home.  I felt as though the ward staff had no clue and, on my following (5th) visit, just days later, despite me sobbing with exhaustion, I was pressurised, by two of the team there, to agree to bring him home every weekend.  Six hundred miles and more than 12 hours driving every weekend… and what was Lily supposed to do?  And was I supposed to go down during the week, too, for meetings?  It just wasn’t possible or sustainable.  I felt that whilst they offered a National service in principle and, whilst the shortage of beds meant that they were driven to accept out of area referrals, at a practical level they weren’t well set up to admit patients from a distance.  It was a relief that Peter was receiving such good treatment and would soon be back in education, but to me the whole situation felt like a relentless nightmare.

By March the stress Lily was under was causing her entire body to be covered with eczema.  She was a little grey shadow who needed, justifiably, a lot of support, nurturing and attention.  The rest of the time I was either with Peter, driving to see Peter or sorting out his washing…..  The latter may seem mundane and irrelevant, but it was a constant issue – how many children do you know who have a full set of 2 + weeks worth of clothes?  How would you like to travel for 3 or more hours to see your child, then to have to spend large chunks of precious time in the laundrette?  I was also meeting with / talking to professionals from the Local Authority, being assessed by a social worker and trying to work out what on earth I could do about finding a school.  I spent hours and a small fortune on the phone to Peter and more time patiently listening to his other hospital doctor, who really wasn’t getting it.  She also left a few weeks later.

Someone a the hospital made a comment about how it gets easier for parents once their child has been admitted.  Not for this one it didn’t.

I should say, at this point, that the service run by his T4 team was fabulous and exactly what Peter needed, but that it was a tricky start.  The distance didn’t help.  The very nature of tertiary / specialist services is that you have more junior staff being trained.  It has been useful to reflect on the fact that these middle grade staff seemed to quickly reach their conclusion of ‘ASD plus anxiety’ and put him in that box, apparently feeling confident that it is one they are comfortable with.  In doing so I felt that genuine ‘listening to hear and to understand’, was significantly obstructed by ‘the box’.  Peter just doesn’t fit in the box.  I felt they needed to hear the story and leave the box to one side.

These issues were largely resolved once we met with the consultant and after Peter’s care coordination was taken over by a more experienced member of the team.

Since Peter’s admission to hospital was at half term, he started at the specialist school there a week later.  He was so overwhelmed by even the idea of school, that the fact that he was able to attend every day so soon after being admitted, was a huge testament to both the ward and the school teams.

It was evident, however, that the boy who once attended mainstream school with no support, in a class of 30, was not the one sat in the hospital school.  After four weeks of specialist and intensive input, in a class of 6, the very experienced school staff were still struggling to find a way to teach him.  He was, as usual, well behaved but struggled to process language in the context of learning: “Too much language – either too many voices or instructions, too much ‘teacher talk’ or too much text in display or on a task sheet – seems to cause stress and a refusal to engage with a task”.  Reading and writing tasks were “Almost exclusively refused” and attempts to engage him in these caused a ‘stress agitation’ response.

Peter’s first CPA[1] (hospital multiagency meeting) meeting was to be held on March 24th.  A lot of emphasis had been placed on this meeting by Peter’s first care co-ordinator (one of the doctors I mentioned earlier).  I was asked a number of times who I thought should be invited and who the information about Peter should be shared with.

There was a great deal of significance placed on confidentiality by hospital staff and I very much appreciated that.  There would be no sloppy or careless sharing of information.  I was confident that there would be no repeat of the unprofessional and breathtakingly ignorant speculation, bias and unqualified opinion, that appears to have happened at the previous schools that Peter had attended.  The subject access request I had placed, asking for a copy of information held on us, a few months earlier had been very revealing.

Still.  It was hard to answer the question ‘who shall we share the information with?’ without first knowing what the information would contain.  I had first hand experience of school staff’s damaging misuse of even very well written medical information and I wanted to be sure not to enable more of this.

So back to the CPA.  I journeyed down the night before and Peter and I had plans to watch a film and enjoy dinner together in the family flat.  I met with the T4 CAMHS Consultant that evening.  His calm authority and genuinely kind and interested approach was instantly reassuring.

The point of a CPA seems to be a regular comprehensive multi agency review of the previous 6 weeks and to plan for the next 6 weeks.  Their recommendation, I was advised, was likely to be that Peter now needs a residential placement at a school that specialises in children with high functioning autism (HF ASD[2]).  Oh. My. God.

My head was spinning and I couldn’t think straight.  Ok, so the more local T4 CAMHS Consultant we had seen at Christmas had advised me that, from now on, Peter would need a specialist school and I had sort of got my head around that.  Sort of.…  Also, within days of his admission, the enormous benefit to Peter of the residential setting was plainly obvious.  Intellectually I could see exactly what was being advised and why and I knew they were right.  Accepting this as our new reality, however, was going to take very many months and I am not sure that it will ever feel right on an emotional level.  Peter had spent months dreaming of the day that his sister would be joining him in middle school so that he “Wouldn’t be a lonely boy at lunchtime anymore”.  He had it all worked out.  With him in Year 7 and Lily joining him in Year 5 they would be on the same lunch sitting.  He wouldn’t have to hide in the library on his own anymore as he felt sure that Lily would keep him company.  The thought of all that responsibility on Lily’s shoulders just made me feel more desperate, and clearly Peter had a fixed plan for surviving the next 2 years.

Sitting in the consultant’s office I was already shaken and trying to process all of this, when a senior member of staff came in to say that: she was really sorry, but there had been an emergency admission and I could not use the family flat that night.  I just cried.  I couldn’t imagine what on earth would have to happen for a child to require an emergency admission to a paediatric psychiatric ward.  The oldest children there were 12 years old for goodness sake.  Peter cleared that up a day or so later “I know why Julie was an emergency Mummy.  She tried to strangle herself.  She has bruises around her neck.  Her mum resuscitated her”.  I’ve seen bruises from a hanging survivor and I will never forget it.  So has my 10 year old now, it seems.

So Peter and I arrived at a tiny bed and breakfast an hour or so later.  Any hope of some time to process all that I had been told was lost.  I had spent an hour sorting us both out and finding my way to the B&B in the dark.  His Care Coordinator, who had booked us in at the B&B, was there waiting for us, to make sure we were settled in OK.  I am quite sure that working so late happened for her on a far too frequent basis.  The care she took to make sure we were OK was very much appreciated.

This wasn’t to be the evening we had planned; no film and our feast turned into a picnic of sandwiches on the bed.  On top of that, I now had no way of processing the news I had received earlier that day about Peter’s need for a residential school.  I was both geographically and emotionally disorientated; my head felt ready to burst.  The following morning I dropped Peter back at the hospital in time for school, spent an expensive and lonely couple of hours in the laundrette trying to get my head around it all.

I returned to the hospital for the CPA meeting at lunchtime and afterwards the care co-ordinator and I filled Peter in on the details.  He was utterly devastated and very angry.  He had done everything asked of him.  He had gone to hospital on his own, been brave and tried so very hard to get better.  As far as he was concerned he had done his bit and the other side of the bargain was that he would get better and come home.  He would then be able to go to a school that was nice, where the staff would listen to his mum, his Doctors, his Clinical Psychologist and his Occupational Therapist.  He wasn’t asking for much in return.

For 22 hours now I had been putting my spinning head on the back burner.  I had needed to remain logical and reasonable; to listen and take more in; to make sure Peter had everything he needed for his next week in hospital; to keep in contact with Lily at home and now Peter was stressed out of his tree and need me to hold him together.

We went to Pizza Express.  On the way back I asked him to try to listen to me.  I told him that we must think about his future and that, maybe, for him to have the best possible future, we should make some difficult decisions about the ‘now’.  He seemed to understand.  Yet again he placed his trust in me and chose to be brave.

Once Peter was in bed, I began the drive home.   At last I could start to try and process all of this new information.  More new information.  Again. 

It was interesting to read a record in Peter’s Social Care file dated this same day.  By co-incidence, the same day that Peter’s specialist team made these recommendations, based on a six week inpatient assessment, a file note said “School think Peter is fine”.  They. Had. No. Clue.

Click here for Part 4

screen-shot-2017-02-03-at-19-11-40

[1] CPA The Care Programme Approach (CPA) is a national system which sets out how secondary mental health services should help people with mental illnesses and complex needs

[2] HF ASD: High Functioning Autism Spectrum Disorder – an ‘umbrella term’ that includes a number of neurodevelopment conditions including Asperger’s Syndrome, which Peter had been diagnosed with 3 years earlier.

Advertisements

6 thoughts on “It Must Be Mum – Part 3

  1. Reading the above makes me so mad, They seem to think it’s a joke. I never got the impression that anyone cared bar the mother. The whole NHS is one big Box it’s a numbers game.

    Like

    1. It was so hard but thankfully we did come across people in the NHS that did care. The local psychiatrist fought hard for the admission thankfully and there were others who did all they could. The system as a whole is awful. Thank you for reading this story and taking the time to comment. It means a lot

      Like

  2. The very system that is there to protect and support our vulnerable children causes more harm than good. When it comes to picking up the pieces they are are nowhere to be found.
    Systematic failures by so called professionals leave our special children even more traumatised. Someone should be made accountable for failing Peter and all our children.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s