MS Parent Advocate is a supportive blog focusing on the challenges and wins of parenting children with additional needs. Based in Hampshire Martha runs workshops for schools and other education providers in Surrey, London & Hampshire on how to improve empathy between teachers and parents.

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The Gift of Sandpaper

Updated: Feb 4

Ladies and Gentleman, we have CAMHS. Yes, you heard me right… WE. HAVE. CAMHS.

Some of you will be looking askance, wondering, not for the first time, what on earth I am banging on about. Others will have either fallen off their chairs in shock or perhaps turned a light shade of envious green. I know this, because I have turned green myself many, many times.


For those lucky enough not to know, CAMHS is the Child and Adolescent Mental Health Service, described by the National Health Service as ‘is used as a term for all services that work with children and young people who have difficulties with their emotional or behavioural wellbeing’ (www.nhs.uk). I say lucky enough ‘not to know’ because very often if you do know about it, someone you love needs it, and very very often, cannot access the service. CAMHS is under siege. A quick google search is enough to tell you that the service is ‘overwhelmed’, ‘buckling’, ‘in crisis’ and, in one desperately sad article on the BBC from September 2018,

https://www.bbc.co.uk/news/health-45607313 ‘not fit for purpose’.


Two years ago I sat with a friend in front of a local government councillor, reading through a four page document detailing every attempt I had made to access help for one of my children from every service available and every single door that had been slammed in my face. She had her head in her hands. We then sat with an incredibly well-meaning senior member of the NHS who apologised profusely and set up a series of meetings to try to ensure no one else in a similar situation fell through the cracks. We left the county before I knew whether this bore fruit.


My child had benefited from therapy before when very young; six months of something effective but brutal which started to address a particular disorder. That intervention and the lengthy training course for me that followed, were accessed via a specific fund set up for families like mine. That fund is now virtually impossible to access and those that do manage to clamber over the hurdles find that the maximum financial aid on offer to families is now so low it may be of little real use.


Therapy in itself is a tricky thing. Firstly, it is no fun at all. In the short term it can be shocking and painful and often you have to wait a very long time to see any benefit whatsoever. It also doesn’t necessarily ‘cure’ stuff because what has happened has happened and that can’t magically disappear from a person’s history. What it can do, when effective, is rub the sharp edges off the effects of trauma. It is a bit like sandpaper and you have to hope that the person wielding it uses a fine grade and applies it gently.


We did have some intervention from CAMHS before we left our last home but only due to a massive complaint which effectively shamed people into taking action. We were assigned a four session assessment to inform the next steps. Two years of treatment was recommended but as we needed to move, we could not take up their offer. The effect of four sessions with strangers poking around inside my child’s head, with no follow up treatment, was extreme and regrettable.


In November 2018 I asked my new GP for a medication review for my child as they had grown significantly and the current dose appeared to be less effective. The GP was unable to act and referred us to CAMHS for the review. We waited. And waited. Then, at the end of August 2019, just before the start of the new academic year (and another new school for my child), our appointment came through.


It was made immediately clear that my child’s dose was insufficient and, due to growth, needed to be doubled. Then the nurse consultant asked me a series of detailed questions about our life and, very quickly, asked whether I would like an internal referral for an assessment. It may have helped that we met at the end of a summer holiday that started with a 9 hour trip to A&E and went downhill from there. I was aware that I looked haggard, exhausted and that my attempts at smiling looked as though they hurt. I sighed. Another assessment which would be tough on my child. I told her that I wasn’t sure. That we had been put through too many assessments only to be told that we didn’t meet the criteria and that I had lost all faith in the system. That we were both weary of practitioners, fed up to the back teeth of answering the same old questions, playing with the same toys in the box and of hearing the reasons why not. That unless the referral had a strong chance of leading to some actual effective treatment that would benefit my child, my response would be, as politely as possible, ‘do not waste our time’.


She persevered, I caved, and, within two months I met with two practitioners. At home we were going through a particularly difficult phase - night terrors ensured that my child woke me up approximately every 15 minutes between 10pm and 4.30am for days on end and so, yet again, I crawled into the room looking deranged. ‘Ask me anything’ I yelled, ‘I am beyond caring’.


They listened. They were interested. They took notes. They completely understood the previous therapeutic intervention and its effect on my child. But, more than anything, they talked to me as if I was a perfectly rational human being. We discussed the six month training course I had done and they understood it’s value. They accepted that I did not want to go on a duplicate course because I use what I learned every day. For the first time in a very long time I fostered a spark of hope that laying out our life to be picked over might actually be of use. Yes, they were offering yet another assessment but it might just lead to a meaningful intervention. I threw our hats in the ring.


The first time my child met their therapist they felt so comfortable that I was able leave the room half way through. This was nothing short of a miracle. In session two, the two of them met completely on their own. Just before the last session I was called to a meeting with the senior practitioner. ‘We feel it has gone well’, he said. I braced myself for the let down. ‘We’d like to offer an intensive course, three times a week, to get things started’. I stared at him. ‘I beg your pardon’ I said. ‘Could you say that again please’. He repeated the offer. ‘Are you serious? Are you really going to help?’ I felt tears prickling the back of my eyes. He looked confused. ‘Don’t worry’ I said, ‘this is actually my ecstatic face’.


So, at the end of this week, we start. It is another step into the unknown and I hope that our faith in the therapist proves correct. It will be difficult, exposing and painful for my child but we will both embrace the process and hope that the sandpaperish application is not too harsh. We are amongst the lucky few and we are immensely grateful.







http://www.rainbowsaretoobeautiful.com/2020/02/send-and-spectrumsunday-91.html


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