When My GP's Office Told Me, 'You're Costing Us a Lot of Money'


After finally having a referral sent to the Royal National Orthopaedic Hospital in Stanmore to see their specialist Ehlers-Danlos syndrome 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 six months of pushing and a formal complaint, I had a referral sent through at the request of my cardiologist. Unfortunately as my GP surgery had refused to send the referral, by the time it was sent out they, too, had books too full to take new patients. I knew 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, “You’re costing us a lot of money.”

Yes, that’s 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 fueled 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. Within 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 can steal 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 can steal our ability to eat normally, to sleep normally, to function socially or function at all. It can cause heart problems, urinary problems, swallowing problems and severe fatigue. It causes so many issues that many of us become depressed and anxious. It can effect our lives so much that we literally can not function, and without treatment these effects are lifelong.

We may not be dying, but living with EDS that is not being managed intrudes our lives. It can feel like 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? Money should not come into this when a person’s life could be totally turned around with the right input.

I am exhausted from 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 who 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 than ever before. I can just about cope with this – it is healthily getting turned into anger rather then self-hatred, but two 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 others out there dealing with the same comments who may not cope with them so well.

It is not acceptable.

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