by admin
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Hi Maralyn!


All good here thank you!


Chloe has been to A&E about eight times, I should think, since she was 16. We tend to take her to Airedale if we opt to take her to A&E and have only had good experiences. I think three times she has been admitted from A&E – again Airedale good but BRI less so. I think BRI have probably moved on a bit since Chloe’s admissions which were not good – huge open wards then and we were left to our own devices. No help with food and personal care unless we were there to do it. Inappropriate surroundings – large ward with people around Chloe who were in distress which was upsetting for her. Her admission at Airedale was better – in that she was in a smaller ward which was less stressful for her but still little assistance around eating and personal care.


The ‘good’ experiences in A&E I think were due partly to being treated by young doctors (still in training or ‘new doctors’) who are now more clued up on special needs. Doctors and consultants on wards are, still too often, ‘old school’. Once on a ward – staff are just too busy with paperwork and chasing their tails to get involved on a personal level. Understaffing and no one with the time to keep a check on vulnerable and less able patients.


I think there needs to be a small team of auxilliaries – dedicated to special needs patients – whose job it is to act as intermediaries between patient, parents and the medical staff. Parents are too stressed to be able to interact with the calm and composure that is needed when dealing with doctors, consultants and nurses (all too god-like in their own opinions! – sorry that was just me going off on one!!!!) How on earth patients with special needs go on when they don’t have parents to sit by the bedside 24/7 is a mystery to me – maybe they just die – who knows!


Back to my point – the auxilliary’s job would be to check the patient regularly and frequently to ensure he/she is comfortable, has eaten or been fed, has had fluids, is clean, been to toilet, has had medication on time, is responding as expected to treatment. To act as a go-between with the medical staff, reminding them of medication times, reporting back anything that is not going to plan etc. Also to interact with the patient from time to time and make sure they have something appropriate to do – music, colouring, reading, magazines, jigsaws etc…


Lack of funding will be the reason given for this – but I think from reading your experience with LGI – had there been someone like this on hand then Kristian’s stay might have been shorter and less expensive for them and better for you all – ie it would be cost effective.


Hope this helps. Get back to me if you need more.


Lots of love


Amanda XXXXX