There is an urgency, not necessarily shared by others, about changing how persons with severe acquired brain injury (sABI) are treated. This is not something that will be solved by a task force or a steering group planning a response to a proposal concerning the framework established …. you get my drift.
Each day that passes, sABI survivors are loosing one day of their life without the proper support. Each day that passes, family members are restricted in how they can help, by red tape, risk assessments (risk for the professionals, not the sABI survivors), and limitations imposed by ‘system’ regulations. Each day we don’t make progress in creating an alternative to the current neglect is a day lost for those magnificent young people.
Here is Pádraig holding his head up high in the bed for the hair dryer after a shower (the hand is there behind his head for ‘just in case’) and holding his leg up high in the air while sitting in his wheelchair. I tried to do both of these ‘exercises’ myself and found them both quite challenging.
Imagine that there are sABI survivors in nursing homes, nursing homes that don’t allow private, specialised physios access to sABI survivors, that don’t allow parents to do simple exercises with their family members, that don’t facilitate inclusion in appropriate social activities.
I don’t want to ramble on but we will create an alternative to these absolutely unbelievable conditions, an alternative that will allow sABI survivors and their families to live a decent without fear, without threats from anyone, and with tons of love, professional help, and a thoroughly positive outlook.
The sooner the better.
Still not heard back from the HSE, no reply to my queries and I don’t know why.