Target reached for Selah's critical surgery in Germany.
Catherine asks
Hi, so pleased to hear the surgery has given back some normality to Selah. We have been navigating the journey of POTs with our daughter and am aware of the overlap with Selahs diagnosis. It has been several years of constant pushing with the medical fraternity to get answers for what was initially put down to teenage girl issues. We are not yet 100% there with full diagnosis due to new stomach and back pain and nausea. We have spent a lot getting private investigations but limited knowledge of these illnesses are problematic The impact on one's quality of life cannot be underestimated. I would like to know if I can support any proactive action or lobbying towards getting funding for these operations covered. I would also be interested on what grounds the health system declined support for the operation in Germany if you were okay to share. It seems a life changing option and a savings on the health system long term. Defies belief. Best wishes for the future and my offer is sincere.
Melva
Kia ora Catherine, thanks for your question. Firstly, thank you for your courage and determination as a parent advocating for your daughter. It's a tough burden to carry and there are far too many things that get thrown up with EDS and AVCS in New Zealand that make that burden even heavier than it needs to be.
Currently the only funding that would have been available to have the surgery that Selah had in Germany would have been the HCTP pool. Up until our case such funding was a possibility but difficult for many to obtain even though it had been provided for one or two cases in the past.
At the time we were applying a report was being put together in MALS in particular, related AVCS, their diagnosis, and evaluating various surgeries being done around the world. That report deemed the surgery to be experimental. HCTP funding cannot be given for anything considered experimental. We were offered no other treatment pathway and I would dispute the finding that it is experimental but that's what rendered the fund unable to help us.
We were disappointed with the report but it opened up some possibilities for change here - the push to cement a nationally agreed diagnostic pathway, and the possibility of the surgery being done here as an experimental option with informed consent.
One of the best things people can be doing is continuing to raise awareness - talking about it with GPs and other health professionals. In that regard, this video with Dr Fraser Burling talking about it is really good information to share https://youtu.be/URpO43_FaDA?si=r1CE0RpH0AVfxhIY
Lynn asks
Sorry to read your update Frank. As I previously pointed out, our Grandaughter Trinity is fighting the same battle re gettinf to Germany. We did not bother trying to apply for funding as we knew it would be a waste of time. When heads of DHBs decide to believe these girls conditions are " all in thd head" ( mental health) then sorry to say, your family along with the many others will be left hanging and trying by all means to just stay alive long enough to be able to raise the funds necessary to get to Germany.
Our girl was supposed to have had her pegj line repositioned today so she could once again get some sort of nutritional assistance as well as pain reluef, however st the last minute while in theatre, order came down from ?? DHB Head that NO action was to be taken and that all medical care is being refused. !!! This is our CARING Health System. Good luck.
This question has not been answered yet.
Lynn asks
So happy for Selah that you have been able to have application for emergency funding submitted on your behalf. Regrettably other sufferers such as our grandaughter do not have the same support from their DHBs
https://givealittle.co.nz/cause/health-system-fails-our-18-year-old-save-a-life.
Continue the fight Selah, thinking of you and wishing you all the best. 💓 from a most concerned Grandparent of another Compressed angel 💔💔
Melva
Lynn, thank you for commenting and mentioning Trinity. On this issue there are far too many stories of wonderful young people unable to get the help they need. We have been very fortunate with the medical team we have. With the centralisation of the health system we're hoping that if we can go through the funding application properly and be successful, it may make it easier for others. Sadly we have no control over that system though. There are some solid injustices being faced by these young people and the trend of problems is consistent. Awareness needs to keep being raised so these young people can get the help they need, and ultimately that should be able to be done without any of us needing to go to Germany. Much aroha to you, Trinity, her parents, and your wider family. - Frank (Selah's dad)
Login to ask a question