This last week has been testing for me.
After finally having a referral sent to the Royal National Orthopaedic Hospital in Stanmore to see their specialist EDS team, I have come up against yet another wall.
Stanmore is one of the top places in the country for patients with Ehlers Danlos Syndrome. They have a team full of specialists who unusually know about, and manage those with EDS. Their books have been closed for years, and finally the doors have been opened for new patients, all of us in dire need of a team that understand and cater to our needs.
Last year, after 6 months of pushing and a formal complaint, I had a referral sent through to Dr Kaz-Kaz at the request of my cardiologist. Unfortunately as my GP surgery had point blank refused to send the referral, by the time it was sent out they too had books too full to take new patients.
I knew that there was a reason behind my referrals not being sent out, but at the time the GP appeared to be doing this out of complacency rather then anything else.
This week I called up Stanmore to find out the status of my referral when they told me it now has to come from a local rheumatologist rather then the surgery – I knew this could be an issue, but wasn’t quite expecting to hear the reasons behind this.
I called up the surgery and explained my situation. The reaction was a flat out no to a local referral, followed swiftly with an angry “Your costing us a lot of money”.
Yes, thats right – never mind the fact that I am a patient with the same rights for help as any other chronically ill person on their books – this entire continual struggle is fuelled by the surgery having me down as either a patient not worthy of help, or a patient who is too costly to bother with.
This type of comment seems totally unacceptable to me. Regardless of the cost behind treatment and referrals, it is not a comment to fling at a patient who is sick. It is not a comment I have ever heard those with other chronic illnesses mentioning – in fact I know several severely disabled people who have fantastic support from their GPs who put in the care that patient needs regardless – because they NEED it. Yet with in the EDS community it seems this is not an uncommon thing.
This illness that effects our every moment has a hugely detrimental effect on us. It steals away our ability to move about safely, it causes great pain and often leads to a point where we are physically unable to work. It steals our ability to eat normally, to sleep normally, to function socially or function at all. It causes heart problems, urinary problems, swallowing problems and severe fatigue. It causes so many issues that we become depressed and anxious. It can effect our lives so much that we literally can not function, and without treatment these effects are life long.
We may not be dying, but living with EDS that is not being managed intrudes our lives just as much as it may with a terminal illness. Every shred of our being is slowly stripped away – and all of this without the support of the medical profession.
Why is it that this is OK? Why are we the illness that everybody ignores and disbelieves? Money should not come into this when a persons life could be totally turned around with the right input – and with most other chronic illnesses this would indeed be the case.
I am exhausted of fighting the system. I have bitten the bullet in the past and gone privately for help, but unfortunately living on benefits doesn’t leave you with a lot to spare, and Stanmore won’t accept a private referral for their services anyhow. I do not need this continual fight on my hands when I am already sick, in pain and exhausted, yet I have no option but to carry on pushing hard if I want this referral badly enough, and I do. I want the chance to function again, to live again and to work again. I want the opportunity to learn how to self manage effectively and understand how to cope with my illness. I want a life.
This is all very difficult to remember when you are continually written off by those that should be supporting your needs. It is a very damaging way to treat a patient, and really does beg the question; Why am I so unworthy?
I feel lucky that I am mentally stronger then ever before. I can just about cope with this – it is healthily getting turned into anger rather then self hatred, but 2 years ago this would have had me on my knees and added fuel to the fire of depression, anxiety and PTSD. It scares me that there are so many other out there dealing with the same comments who may not cope with them so well.
It is not acceptable.