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.
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.