EBL_Newsletter_Summer_2021_DIGITAL | Page 4

EBL Carer Advisory Group

Coronavirus has been challenging for us all , however , being a parent of an intellectually disabled child who is going through medical issues can be exhausting . Last year , my daughter who lives in supported accommodation was going through times of being unwell and not very willing to go to the doctors , therefore staff would call a locum to come to the house where she was more comfortable . It was not easy to diagnose when she was not able to explain what was happening or even if in pain . The staff ’ s observations had to guide the doctor . Almost 6 months later after a day of not wanting to eat , drink or get out of bed an ambulance was called . She did not resist going in the ambulance at all which was a sign that it was quite serious . She received care from Modbury Hospital who diagnosed her problem and then was sent to the Lyell McEwin . The staff at Modbury were excellent and while the problem was corrected at Lyell McEwin , I did not see the same level of empathy from their nurses on the wards . While my daughters health is improving she still needs monitoring .

My reason for sharing this with you is to highlight the fact that the disabled do not always get the care they should from the medical profession . I often think after leaving a doctors surgery of things I should have said or asked or that I should have been more forceful with what I thought should have happened . They do not under-stand how difficult it is for our children to co-operate in having an x-ray or blood test taken . I did write to our local surgery with a complaint about one of the nursing staff . I will admit I had gone into the surgery under my daughter ’ s name as she would not come with me . The nurse soon realised I was not that person and was not sympathetic about my situation . When I insisted on seeing the doctor as I needed to get my daughter ’ s problem solved she left the room and a door slammed very loudly not long after . The doctor rang me following the letter and discussed what they could do in the future but he did not comment about the attitude of the nurse which I highlighted in my letter until I mentioned the subject . I was told she would be spoken to , so had trust that he would do so .
I could give you more situations like this and I am sure you have experiences of your own . I asked my previous G . P . ( a female ) who has a brother-in law with intellectual disability ( therefore more understanding of our circumstances ) if a hospital would have any policies or procedures when dealing with our children . Her response was that in the overall picture disability patients are about 1.5 % of the population and she was not aware any that do . My reason for asking her this was after yet another horrible experience in a private hospital to acquire a blood test .
It is important to advocate for our children to get the best outcome we can even if we do not always feel comfortable doing so . To those that can do it easily maybe you would like to share some of your strategies with other parents at an EBL morning tea . We have 4 morning teas scheduled for this year and you will receive and invitation closer to the date . Please mark on your calendar May 27th , August 16th and November 19th for this year ’ s upcoming morning teas . If you have any concerns you would like to discuss please contact me on 0411483976 .
Last but not least a big thankyou to Emily ( House Manager ) for her support and help over the last 9 months and staying with us for many hours at the hospital .
Dawn Brodie
Convenor EBL Carer Advisory Group
4 EBL QUARTERLY NEWSLETTER