Good morning
I have an update. I posted many weeks ago that as a carer for my son who has EDS, he has been left with no medical care. I want to thank everyone for their suggestions and report that I followed up every suggestion I was given. My son had another serious fall on 17th April and this resulted in a dislocated scapula and damage to his upper neck, in addition to his other injuries to his already seriously damaged shoulder. Paramedics attended and declined to take him to hospital on the grounds that his condition was "chronic and ongoing" and would not be treated in A&E. Earlier this month Norfolk and Norwich hospital was put in Special Measures. I have tirelessly pursued medical care via the complaints processes of various organisations including NHS England and the CQC, even the local news (BBC Norfolk and ITV Anglia) covered my son's story and finally my son had a visit from the physiotherapist to whom he was referred nine months ago. Sadly, she was less than helpful but another round of complaints ensured my son was referred to an Orthopaedic consultant and two weeks of calls on my part asking for a home visit (something that is not routinely offered, we were told) finally culminated yesterday with a visit out of the blue! The Doctor walked into my son's room and said as soon as he met my son: "you have EDS don't you?" We could honestly have cried! He immediately recognised the seriousness of my son's injuries and has prescribed a sling splint for his upper arm/chest which does not rely on being hung around his neck, which will give him some support and relief for his now flail arm. Further more, he won't be getting just one, but 2 so he can wear them 24/7 to alleviate the pain of the shoulder separation and heal the damaged ligaments and muscles of his shoulder. Wow!
After all this year being told that my son could not access NHS care, it seems we are finally getting some help. It is but one step. One of the main difficulties we have faced is that my son has no GP.
I've been told that the local GP practice who has repeatedly (over 10 times) refused to register my son (including two registered delivery applications which mysteriously disappeared) ; will now be doing so and have, I understand, offered a home visit assessment in recognition, finally, of his bed bound status. This has yet to happen or be acknowledged in writing but we are cautiously hopeful today.
We know we are not alone. Many of the paramedics and doctors we've spoken to in the past year have said that they know of several other people in Norfolk and Suffolk who also have been denied medical care with their EDS. It seems it is not a "rare occurrence" and people should know that being struck off by their GP for their disability, particularly in resource-strapped rural communities is happening more and more and is nothing to be ashamed of nor indeed should they allow themselves to be cowed by it.
If anyone else out there is a victim of this "hostile environment" towards chronic disability, can I assure you that it really and truly is the case of "the squeaky wheel gets the oil"? OK, you might have to be screaming rather than squeaking, but there ARE laws and rights and you can enforce them and persistence pays. Never give up. If you get a no, give it a few months and ring again. And again. And again. Then complain. Then ring again. Keep going until you get a yes.
Can I thank everyone in this community for their support these past few months. The past year has been incredibly stressful and dark for us both, but we couldn't have done it without your support. Thank you.
