It took four adults, yes FOUR, (me, Nanda and two nurses) to hold her down and still enough for the doctor to get a blood sample. You wouldn´t believe how strong a 2 year old in pain can be.
Fuck.
I am reading the National Institute for Health and Clinical Excellence´s August 2005 report (i.e. 9 months before Kezia was diagnosed with leukaemia) entitled Improving Outcomes in Children and Young People with Cancer: The Manual. NICE, as it is known, is the advisory authority for NHS medical practice in England and Wales.
NICE recommends that 0.7 Full Time Equivalent paediatric anaesthists are available at each specialist paediatric oncology treatment centre. Ok, fair enough, me the punter really doesn´t know. For Pain Management it recommends that ¨all children ... should have daily access to play specialists ... to assist in preparation for painful procedures¨. But NICE fails to specify how many FTE Play Specialists a treatment centre should have.
The Royal Manchester Children´s Hospital with about 150+ in-patients, and I-don´t-know-how-many out-patients has one full-time working clown and one music therapist (both, I believe, paid by charity). So the clown would stop by for 30 seconds every other day, and bring 30 seconds of genuine happiness and glee to Kezia´s face and for 30 seconds Mum and Dad could switch off and just observe a little girl laughing and giggling. The music teacher/therapist once a week.
The ¨play specialist¨ is not there when we need him/her in preparation for that painful procedure.
NICE tells us that ¨Play, the use of such techniques such as distraction, or the use of cognitive behaviour therapies to enhance coping skills, can prepare children and young people for painful procedures¨.
Both nurses and carers at the RMCH are ¨play specialists¨. I really do think the nurses should receive a paediatric oncology nurse play-specialist qualification (and, thinking about it, with only a little bit of effort, our consultant would qualify as well!).
So let´s look at paediatric oncology pain management in the community ...
Meanwhile, when confronted with that painful procedure we, the carers, will use a very well-known ¨cognitive behaviour therapy¨ - bribery.
3 comments:
Angus, There aren't many more difficult things than holding your child down for a painful or scary medical procedure. If it helps at all, the play specialists (called "Child Life" specialists at our hospital) are only of limited value in situations like this. I feel like we spent 2 1/2 years trying to stay one step ahead of Fergus' terror of these sorts of things. He always slept poorly the night before (which didn't help) and sometimes got so nervous on the day of the procedure that he hyperventilated and threw up. Ultimately, we learned to sort of follow his lead. Toward the end of treatment, for example, we found that it helped him to imagine the approaching needle as some sort of vampire, or sharp-toothed dinosaur, and by sort of playing along with this, and accepting his rising fear and even his almost-screams about the approaching villain, we could help him turn it into a fantasy, which gave him just enough distance to make the "recovery" time relatively short. I'm not saying this kind of thing would necessarily work for Kezia (or any other kid), but it's hard enough that we parents have to accept the pain of our children like this, but we also have to use our knowledge of our child's psyche, add a huge amount of creativity, and be willing to throw a bunch of stuff against the wall to see what sticks. It'll drive a parent crazy. But I guess it's our lot. Take care.
Yeah, that part is definitely the hardest. For us one of the hardest was when Bianca reacted to the PEG injection that goes into the leg and then after that couldn't get it again, but instead had to get 6 of the Erwinia ones (1 every second day). The first day she allowed me to put ice on the spot where they would do it, by the 6th day I had to hold her still, she wasn't interested in the ice and as we waited for them to get everything ready I could see her little heart beating fast and she said in this little voice "but Mommy it will hurt". That really breaks your heart.
The NICE report advises on "best practice". It makes interesting reading - many of its recommendations seem to very "pie-in-the-sky" and as it readily admits are not evidence-based.
Although I have often praised our own hospital, the RMCH, it often does not live up to the utopia described in this report.
I hope to write on it some more when I've finished wading through it.
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