"Deteriorating support and increased pressure on carers"

Service provision and support for carers used to be something NHS Tayside and in particular Glenlaw house and Kingspark school medical unit prided themselves on, until Covid happened.

Despite having open access to the ward we are constantly being told we must go through A&E which is more crowded and has a high risk of cross infection of our exceptional complex needs children and told by A&E that we have to go to the ward, without any examination.  This wastes our time and the time of the over worked staff within A&E and ambulance staff, not to mention money wasted going from one area to the other.

Within respite we now have to fill out more forms every time our children have respite, this includes medication forms for the medication our children are on which the unit all ready have access to on the NHS system.

Every consultation carried out on behalf of carers states, form filling is one of the most disliked and time consuming things carers have to do and should be reduced not increased.

We are also being told we must date medication when we open it, this is practice used on stock medication not prescribed as the quantity given, is to be used before new prescription can be made. (Order made 1 week before you run out).

Now the school has changed to using stock emergency seizure medication, after 10+ years they can no longer keep stock supply, which due to the amount of emergency medication my child can have in one week and the time it can take to obtain from prescription, leaves my child with the high risk of not having any emergency meds at school. I have had to withdraw my child and keep them at home.

Each one of these changes were made without any consultation with carers which breaches NHS Taysides own policies.

Either bureaucracy has over taken common sense or carers are now doing the job of the nurses free of charge but full of the stress that they really do not need and it is not acceptable.

I would have preferred to write a more positive story but these issues are being ignored and children with exceptional complex medical needs are suffering from having exhausted carers falling into ill health from these practices.