To everyone … just thought I would share with you a message Louise’s mum , my daughter sent out to the media last night … she’s desperate for the support from the government and heath system to actually stand by the oath and duty of care they all signed …. Thank you all so much for you donations , Jodi was able to sort a better wheelchair for Louise to use ( the orderly one from TDHB isn’t made for everyday use ) and a referral has been made that will take a minimum 2-3 weeks and maybe declined has been made so we wait again , we will hire this one for now til we know more what Louise needs and for how long etc ..
Please can you help bring awareness to our health system failure….
First up a back ground , as you know I’m herd manager so pretty full time job 35mins away in Manaia my 23 year old daughter lives in the house we own with all of her animals living a happily independent life living with cerebral palsy after being born 1lb 13oz , even managed to get her license last year . She does have a few special needs including Autism, but is extremely intelligent. Well on the 8th Feb she was up on farm here with me visiting for lunch with her support worker and she had a seizure, something she’s never had before . From here we were rescue helicopter to whanganui hospital… 34 days in there, NP base and Hawera hospital she was discharged back to her house where she now is in a wheelchair and using a zimmer frame still currently having seizures… physio only come once and after 28 days at home she’s getting worse … ended up having a fall and 3 hour long seizure so was taken to base
On leaving the hospital all we knew is that they were non epileptic seizures and the only fix was the mental health team and physio team … while home for the month she seen the phyiso twice the first week and then in the last week because I rang base and asked for a urgent email to the south taranaki physio team to contact my daughter or myself , funny she turned up to visit the next day and was quite worried about her … and as for the mental health team they decline the referral first time NP did one so Hawera did another and a community mental health nurse rang me last week to get a appointment but can’t fit into my work hours and doesn’t really do house visits..
My boss was amazing and I was able to spend the first 21 days with her in hospital but I have a mortgage to pay so I have been back at work since … things got pretty bad so I rang the daily news , a report met and photographer came and visited us in Manaia shocked that we hadn’t even had a neurologist appointment yet … the following day Louise was taken via ambulance to base at 2am when I got there after milking I was sadly informed that Hawera hospital had been overdosing her on one medication and then prescribed it on discharge and gp has filled the prescription again since so we have all been overdosing her hence why she was getting worse also then later that next day to get a call from the doctor saying sue to a phone call from a news reporter there will be a neurologist flying down from Auckland to see you Saturday ..
We are now on day 9 in base again awaiting the go ahead to return home with hopefully more funding for support carer hours … my concern is the moment we come home we are back to being alone again fighting to try and get some of her independent back … we are 20 months dept waiting for a hospital funded bathroom due to her not being able to use it very well , well now she can’t even get in the shower at all and they just don’t care …. I don’t really know why im reaching out or maybe I just needed to vent but surely this whole situation of being passed from here to here to there with no answer or responsibility taken by anyone , I mean the daily news haven’t even run the story … we are hitting many bridges in trying to get her help it’s sad …
I struggle to find the words to say to Jodi when she shares these with me because it’s just unfair totally not ok