"The night nurse was kind and treated ..."

What I liked

The night nurse was kind and treated my 3 year old kindly and as a child rather than expecting adult behaviour as expected by some of the more senior nursing staff on paediatrics.

Parents able to stay with child overnight.

What could be improved

Paediatrics at Mayday - 3 year old child diagnosed with type 1 diabetes.

Cleanliness -

There was no soap in the patients toilet for over 2 days of our 4 day stay. The water from the tap became too hot for children to use within seconds of turning it on - with no option to vary the temperature.

Dignity and respect -

Nobody seemed to listen to parental concerns even when justified. Care did not seem to be cohesive but was haphazard the wrong insulin (Novomix rather that Novorapid) being administered on two separate occasions. The effect of which was not fatal but did affect the insulin regimen my daughter was put on and our confidence in the staff.

It took 2 days to see any staff member experienced in diabetes and when the specialist ward nurse did arrive she was brusque and patronising. No psychiatric care was offered during my daughters stay despite the NHS guidelines and mention/request by parents.

General standard of care -

Lancets

The owen mumford unistix lancets used for my daughters finger prick blood glucose tests throughout her stay were the blue and pink neonatal and laboratory tests intended for use on heel prick tests or where large amounts of blood are needed - not intended for the frequent finger testing she was subjected to. The hospital should have been using the Owen Mumford Unistix Comfort (purple and white) which have a far higher guage needle and hurt far less. (Please see the NHS purchasing and supply report on lancets March 2006 for further detail or the Owen Mumford website). Despite bringing this to the nursing staff attention on three separate occassions, including to the diabetic specialist nurse, I was ignored (dignity/respect?).

My daughters bed needed changing repeatedly due to her bleeding on to the sheets. The effect - trauma to an already traumatised three year old.

Anything else?

Blood testing kit and information provided on discharge -

Luckily my husband and I have experience of diabetes and its treatment and were able to take control of the situation personally quite early.

The Diabetic nurse on the ward was not interested in the opinion or feelings of parents, it was her way only even with a three year old. No record was kept of our daughters eating despite her diabetes diagnosis and the diabetic nurse called me a liar when I said I had not fed my daughter after 10 am on the day of discharge, (which I had not).

The information we were discharged with was poor, mostly drug company propaganda, and we did not get the Glucagon, or training on its administration it stated we received in the discharge notes. When this was raised it was ignored.

Finally, the glucose meter we were discharged with was an optimum exceed. We had asked the diabetic nurse for an accu-check as we were familiar with this but she insisted we used the one she gave us. Within 2 days of getting home I had nearly killed my child. I had started using a new box of testing sticks without calibrating the meter (my first time). Instead of giving an error message the meter gave a "HI" reading indicating she needed a quite large insulin injection. I was surprised by the result and did two further tests before preparing her insulin dose. I almost had the needle in her leg when I realised my error and was sick. After calibration her blood sugar was only 13.2, high but not deserving of the dose I was about to give her.

It was luck that I didn't kill my child and a warning. I threw away the optimum exceed monitors that day and bought the Accu-check meter we wanted originally - the one my husband uses. If the blood testing stick does not match the calibration chip inserted it gives an "E-4" error message not a potentially lethal message. Please consider revising the meters issued to new diabetic patients/parents and/or the training provided.