CHANGE THE GUIDELINES USED AT HOSPITALS WHEN DEALING WITH AUTISTIC CHILDREN HARRY WAS LET DOWN THIS CANT HAPPEN AGAIN WE ASK THAT THESE CHANGES WILL FOREVER BE KNOWN AS HARRYS’ LAW
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my 4 yr old autistic son lost his life this can never be allowed to happen again this petition is to run along side a paper petition and an epetition already in progress We were in a+e and the ward of the hospital for a combined time of just under 9 hours the dr in a+e said harry was 8% dehydrated and needed to be put on a drip and have blood tests taken and even prepared him with numbing cream and sent him to the ward we entered a+e at 8 mins after 12pm we were on the ward for just about 2pm and left just before 9 pm all this time we kept asking for the tests to be completed The heart murmur was detected on the ward at approx 4pm His blood tests taken after he passed away shows high levels of potassium high levels of sodium some liver and kidney problems and some other abnormalities when I asked if they would have been detected on the friday or saturday I was told yes I also asked if he could have been treated and again I was told yes So it seems the dr in a+e may have given the right diagnosis but the drs on theward just never followed through on the tests and treatment the full story is below my little boys story on the 18th June I attended the gp's with Harry as he had been ill for a few days and his mum and I were growing concerned as although the vomiting and diorreah had stopped he was getting no better within himself. We were seen by dr layzel who said that he had a tummy bug and a temperature and although he had lost some weight this was not much of a concern and advised that we should continue giving Harry paracetamol and she made a further appointment for the Friday so that harry could be checked again as the weekend was approaching. on the evening of the 19th June Harry's' mum and I were still concerned so we telephoned the 111 service and we were advised to take harry to the out of hours service at nems on derby road which we did we were seen by the doctor and again told that he had a temperature and a tummy bug and as we already had a gps' appointment the following morning we were advised to continue with the paracetamol and attend the appointment the following morning. on the 20th June we attended the gps' appointment and we were seen by Dr Holly Barret who checked harry over she also asked dr layzels' opinion as she had seen him previously and they both said they weren't too concerned but as the weekend was upon us she asked that I take harry to A+E at the QMC so that a paediatrician could check him over. we arrived at A+E at approx 12pm there was a short wait and then harry was seen. The nurse that saw harry took his obs and we explained about his severe autism which made him anxious and distressed when in unfamiliar environments she said that his temperature was a little high and his heart was racing his blood sugar was fairly high at 9.4 and harry was given the priority level of a category 2 to see the doctors. after the doctor had seen harry we were informed that they wished to tube feed him however harry started to take nutrition orally via a syringe and after a while harry was given a fairly large dosage of ibuprofen when I questioned this i was told that larger doses can be used within the hospital as they dose on weight. Harry had cream applied to both arms and legs as we were told blood tests were needed. harry was then sent up to the children's' assessment unit on arrival we again explained about the severity of his autism and also about his previous problems with his heart when he was a baby and again his obs were taken. we were told that his heart was again racing and that a murmur was heard along with a gushing noise and we were told that an ECG and blood tests were going to be undertaken. we were left sitting in the ward with a very distressed child (due to his autism) for hours we kept asking about the murmur and in total 3 doctors heard this so again we kept asking about the tests as harry was becoming more distressed and had the cream that numbs on both arms and both legs and were told that it was all in good hands, in total my son was left for over 8hours with nothing practical being done we also had to tell the Doctors on more than one occasion that he had thrush in his mouth. Harry was becoming more and more distressed and the test were not being undertaken so we asked again and again but nothing was done. eventually we asked if we could take Harry home for the evening as he was very distressed and would not settle this was agreed with the Doctors with the plan that we return Saturday morning which we did, when home Harry was asleep within 15minutes. on out return Saturday morning still no tests were carried out only his obs and weight we were then discharged by the Doctor and told to take him home and given prescription and told to carry on feeding fluids orally via a syringe which we did. On Sunday he was much the same and then on the Monday he passed away. during his short stay in hospital we were left for hours with a very distressed autistic boy and very little was done we repeatedly asked about the murmur and about his heart and repeatedly asked about the ECG and blood-tests they had said were needed yet these tests were not carried out despite all of our questions nothing was being done. all the above is why we feel that his care while in the hospital was highly inadequate and that the hospital didn't listen and take our concerns seriously instead they did very little for over 8 hours if they had listened to us and had done the tests that we were told were needed i truly believe that my son harry would have received the correct treatment and would still be with us today. we have also received a discharge letter which mentions a diagnosis of gastroenteritis we were never told this also no medications listed although a prescription was given for harry by the doctor on the ward. the system needs changing and we are eager to make sure that it does so this can never happen again with a different system my son would still be alive today.
1: On arrival to A&E status elevated to level 2 so less waiting time to cut down stress levels
2: Each childrens department to have atleast one Dr and nurse trained in autism awareness on duty at all times and they be assigned to specific children with special needs and that they have periodic updated training
3: Experienced play workers to be made more readily available
4: Quicker transitions from one department to the next
5: Side rooms made available to cut stress levels
6: Notes and identity bracelets coloured as a clear indicator of special needs
7: Parents always to be approached first
8: Any treatments or tests needed to be done swiftly
9: Do not leave autistic children unattended at any time
10: Make sure any appropriate treatments or issues are dealt with before discharge
11: Make sure parents have all relevant information during the stay in hospital and on after care on discharge
12: Make Drs aware and accountable for their own actions
13: Give any willing parents a questionnaire so that the hospitals can learn from them
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