Care, Education and Treatment Review (CETR) amidst the Covid19 pandemic!

So here we are amidst the Covid-19 pandemic, and I receive the news that CAMHS are proceeding ahead with a Care, Education and Treatment Review (CETR). I received this news during what I believed to be a regular check-in call from CAMHS, but I was wrong! Whilst I was on the phone, I was able to scribble down this acronym, however there was very little information given other than, ‘there is nothing much more CAMHS can offer in the way of support due to my daughter’s complexities’. I got off the phone feeling very bemused, what was this ‘CETR’ and what did this mean for us?

I didn’t know much about this at all, so I madly started to google! The words that kept jumping out at me was ‘admission to hospital’! Every document I read stated these dreaded words! This naturally was very scary to read and sent me straight into a panic!

However, when I read closer, it appeared that the CETR was to ‘see what other support could be offered to prevent hospital admission’, which in a way was reassuring, however, what I couldn’t get it out of my head was….what IF there isn’t any other support?!

I’d briefly come across the term CTR before

It was nearly four years ago that this term was first batted about but in fact it never transpired into anything. At the time, there was a great deal of confusion, with CAMHS not knowing their own process. I was initially told that a CTR (now referred to as a CETR for children and young people) would need to be held if they were to apply for additional funding for further assessment for my daughter, a specialist assessment. However, I was then told that this was not the case. This went on for several months before it was finally confirmed that a CTR was not necessary. Phew!

We had escaped an inpatient admission by the skin of our teeth, at this time when my daughter was just 8! Due to my daughter’s complexities, CAMHS wanted her to become an inpatient at Great Ormond Street Hospital for further assessment and treatment. However, having done some hefty research on this process (as I had already heard many terrifying stories about inpatient assessments), I was horrified to learn that the average time spent in hospital was 6 months and I also discovered that I would be unable to stay with my daughter! How on earth did they expect an eight year old, with high levels of anxiety, including separation anxiety, to cope with this?

The reason at this point for the CTR and/or further assessment was due to the audio and visual hallucinations my daughter was experiencing and the extreme behaviours she was presenting with.

Despite the challenges with behaviour and my concerns regarding her presentation, there was no way I could allow my daughter to be away from me for such a long period of time and I had to try and find an alternative!

During my research I discovered that the Maudsley hospital were able to offer an outpatient assessment and treatment programme which was fantastic!! What a relief, particularly when CAMHS finally agreed this was the way forward.

Pending CETR

So having had the bombshell dropped that CAMHS were applying for a CETR, it was only a matter of a few days, before I received an electronic invitation to the actual meeting! The invitation came through on Monday, this week, to inform me that the meeting was being held on the Wednesday! What?! I’m not prepared! As with any meeting or appointment, I like to be as prepared as possible. I like to have a list of everything that I would like to say, but how can I possibly prepare for a meeting that a) I had no clue of the format, b) no idea of the intention and c) no clue what the other attendees were likely to say?!

I was emotionally in bits, felt totally unprepared and completely out of my depth!

Whilst the rational side of my brain was trying to convince the irrational side, that this was going to be OKAY, ‘they are holding this to help us’, the irrational side keep kicking in with all the ‘what if’s’ and ‘but’s’!

What I couldn’t get my head around was we were already in receipt of specialist treatment from the Maudsley, so how can there possibly be anything else out there that could ensure better care? I felt an overwhelming sense of doom and was terrified that my daughter would be dumped in an ATU like so many other autistic children and young people.

Get a grip!

Okay, I really needed to get a grip! I needed to dig deep for the strength and resilience that is so often required to get through the most difficult of times!

So I started making notes, I needed to get preparing! Yes, for the unknown, but prepare nonetheless!

I came across a useful guide from ‘Bringing Us Together’ and started jotting down things that I needed clarifying and questions I needed answering. I also started to think about what other support and services could potentially help our critical situation! I needed to find some answers to prevent my family being separated!

What if an admission was required?

I also had to allow myself to go there, to go to that space that could potentially mean facing my fears! I HAD to consider the possibility that my daughter could be admitted as an inpatient.

Whilst this made me feel sick to my stomach, I had to get my head round that IF this was the decision, then it would only be because this was the best option for her. So I started thinking about what this would entail. I tried to think only positive thoughts. It would mean that she would have 24/7 access to expert help, all the specialists in one place, therapy on tap etc.

Decision time

Wednesday of this week was the day! Wednesday was the day that many professionals and myself would come together, via a conference call, to decide my daughter’s fate, I mean future support! I still felt sick and anxious, but I needed to try and focus on the positives and live in hope that this will bring about the very best support that she requires!

Dialling in

So as it quickly approached 1pm, the time of the conference call, my nerves were getting the better of me! Not only was I highly emotional, but I was physically shaking!

So I tentatively started punching in the numbers, followed by the conference call ID and waited! And waited and waited! It was only 4 minutes before the ‘lead’ accepted me into the meeting, but it felt like a life time! Were they already making decisions without me??

I was in!

Okay, so I was in and it all felt a little surreal as professional after professional joined the meeting. However, what I was surprised about was how supportive this turned out to be. Despite, only hearing from others, it actually felt like everyone genuinely wanted to come up with alternatives to best support my daughter.

It was hard to listen to how ‘complex’, my daughter’s needs were and how, despite these being top professionals, this was an ‘unusual‘ case, however it quickly became apparent that they weren’t considering admission to hospital which, believe me came as such a huge relief! My nerves disappeared!

Outcome

For us, the outcome was a little unexpected as I was expecting big decisions to be made, however, apparently due to ‘there being more questions than answers’ another CETR was arranged for 8 weeks time. The only real concrete decision that was made, was for a referral to go to ‘Aspens’ for a mentor for my daughter. I don’t really know what this will look like, but hopefully this will build on her self-esteem, make her feel a bit better about herself and lift her low mood.

Top Tips if you are facing a CETR

Having got myself in such a state prior to our CETR, I would like to reassure you, from my experience, that it really wasn’t as bad as I had imagined!

  • REMEMBER a CETR is held to look at ways to AVOID admission to hospital
  • Prior to the meeting think about anything and everything that may help support your child in the community, enlisting everyone, including school
  • Write down a list of questions you may have
  • Remember, it is NOT down to you to come up with all the answers
  • Try not to panic!
  • Try not to think about the worse case scenario
  • Make notes throughout meeting and/or record it for your own reference
  • Remember to breathe!
  • IF hospital admission is required, then this will be ONLY be in the best interests of your child

For further guidance, as previously mentioned, this article is really helpful:

https://bringingustogether.org.uk/wp-content/uploads/2017/08/CTR-Survival-Guide-Aug-2017-1.pdf

YOU’VE GOT THIS!

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