I am still so angry right now, mostly because I knew it would be a waste of time but I also knew I had no other option. Frustration doesn't even come close to describe my emotions.
After my failed attempted at the Royal National Orthopaedic Hospital's Ehlers Danlos Rehabilitation Programme and subsequent feedback to the team, a follow up appointment was made for me to see my consultant, Dr Mittal, at 10:30 on Monday 4th August 2014 at their clinic on Bolsover Street in London.
To be honest I had my reservations. Dr Mittal was quite nice last time I saw her but she wasn't that helpful. She also misdiagnosed me with carpal tunnel and prescribed wrist braces that I didn't need, but that's another matter
After checking the price of train fares I telephoned Dr Mittal's secretary to see if there were any later appointments so I could catch a cheaper train. I was told I was the last one in clinic but it didn't matter if I was a little late as Dr Mittal would still be around to see me. I told the secretary I would try my best to be on time.
Ten days before my appointment the secretary telephoned be to confirm what time my train would be arriving. I told her the train got into Kings Cross at 10:05 so I should be on time for my 10:30 appointment. Sorted
No.
I arrived at the hospital reception desk at 10:25. The nurse called me through and told me I was early, my appointment wasn't until 14:00.
What?
They had changed my appointment time and not told me. This was not good. I had already booked non-refundable train tickets for 13:48 out of Kings Cross. The nurse checked with the doctor and said they would fit me in at the end of clinic. Phew!
I sat and waited but I was still rather cross. I got in to see Dr Mittal earlier than I expected to. She asked me what did I want to see her for. Erm, the appointment was made for her to see me.
I started out trying to explain how the rehabilitation course was not helpful for me because my existing medical conditions prevented me from fully participating and the physical demands of the course made me worse. She didn't seem the slightest bit interested.
I tried to talk to her about the head and neck pain I've been suffering from. My GP and the pain management doctor both told me to talk to my EDS consultant about it. She refused to talk about it because she only deals with EDS.
WHAT?
I mentioned my autoimmune problems and how I'd recently been diagnosed with Sicca/Sjogren's. She didn't want to know. She only deals with EDS. I told her the reason Dr Sobey from the EDS Service referred me to see Dr Cohen at the RNOH was to determine if I had EDS, an autoimmune condition, or both. Dr Mittal told me again she only deals with EDS, this is an EDS clinic. I didn't find this particularly helpful so I asked who could help me. She said a local rheumatologist.
*sigh*
I told her I've seen FIVE local rhematologists, they ALL missed my hypermobility and discharged me with no treatment and a vague diagnosis of CFS or Fibromyalgia. I needed to see someone who was experienced in EDS and autoimmune conditions. She said this was an EDS clinic and she only dealt with EDS.
Frustrated by this, but knowing it was a futile argument, I moved on. I asked her about the myotonia in my hands. A local neurologist said it was a rare complication of EDS, which she should be able to deal with because she only does EDS, right?
WRONG!
Dr Mittal said I needed to speak to the rehabilitation team about that.
*headdesk*
I told Dr Mittal that I already had spoken to the rehab team about it. They said talk her HER about it because, and they made this very clear from the very beginning of the rehab assessment meeting, THEY DON'T TREAT OR DIAGNOSE MEDICAL CONDITIONS. Dr Mittal just said "absolutely".
So....?
I asked her if there were any treatments for myotonia. She said there are no treatments for EDS, only rehabilitation. That's not what I asked but I wasn't going to get any other answer from her today.
She only dealt with EDS and the only treatment is rehab.
She only dealt with EDS and the only treatment is rehab.
She only dealt with EDS and the only treatment is rehab.
I was getting a bit frustrated by this point. I had a whole list of things I wanted to discuss with her that were directly related to EDS. I took the list out of my bag and she dismissed everything on it. She wouldn't talk to me about my head and neck pain (which is possibly EDS related), I need to see someone local about autoimmune, even though the local doctors can't help me because I'm too complicated, and the only treatment for EDS is rehabilitation. I reminded her that the rehab didn't help me and she shrugged and said it doesn't help everyone.
I told her again, the reason I was there was to see an experienced doctor to figure out my complex health problems. My husband was getting equally frustrated. He asked if she had my original referral letter. She ignored him. He asked again, a little louder. She ignored him. He asked again, almost raising his voice. This got her attention.
She told us there are acceptable levels of behaviour. It took me a moment to realise what she was talking about. She thought we were being aggressive towards her and she said she didn't have to see me if we behaved like this.
:O
She was the one being rude and not answering questions!
I got rather upset and said it was disgraceful that she refused to discuss anything with me. I was so pissed off and angry that our journey had been a complete waste of time. I appreciate she may not have been able to help me with all of my questions but she made no attempt to listen to me and no attempt to find the appropriate medical care for me. All she bloody said was "I only deal with EDS and the only treatment is rehab," which is, in truth, absolute bollocks, but I refrained from telling her that because unlike her, I'm not that rude!
I was in a bit of a state in the waiting room, I asked the nurse who sat in during the appointment if our behaviour had been unacceptable and she said she wasn't allowed to say. I spoke to the nurse on the desk and she gave me a feedback form and found the telephone number for RNOH PALS so I could make a formal complaint.
I know doctors don't have all the answers. I know there is no magic cure for EDS but there are plenty things I can do to help improve my quality of life. Rehab was not right for me at this time and in hindsight Dr Mittal should have known this, she even wrote in her letter to my GP that exercise makes my symptoms worse. How did she expect me to cope with rehab then? That's the problem. I don't think she thinks at all. She was brought in to ease the case load from Dr Cohen but she seems to be able to do little more than recognise the symptoms of EDS and make referrals for rehabilitation.
PALS telephoned me this morning, they are going to make an informal investigation, talk to the team and to Dr Cohen and see if they might be able to bring my appointment to see Dr Cohen forwards. The 18 week NHS waiting time seems to be a fairytale when it comes to RNOH. I was referred to Dr Cohen in August 2013 and I am currently due to see her in March 2015, which is a mere 19 months wait...
It's a good job I'm not ill or anything...oh... wait.... Yes I am ill, I am in pain and my condition is deteriorating.
I must look on the bright side. At least I didn't have to pay for the consultation. It only cost me £116 in train fares, one day off work for my husband to take me and push my wheelchair around London (I'm housebound without assistance) and the kind services of my parents who looked after my three children for the day.
I'll keep you posted.
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