I am an impatient person. I do not like waiting. I hate waiting, but being a patient means I have to be, well, patient.
I know some things take time, you can't grow a tree from seed overnight, but I get irked when things take longer than they really should. One of the things I get particularly frustrated about is communication between medical establishments. We might be living in an era where you can send gigabytes of data to the other side of the world in a matter of seconds but the NHS seem to be stuck in the stone age.
The POTS clinic in Sheffield asked my GP to send them my urine test results. How long do you think it took them to send the letter?
All they had to do was write a letter to say that Mrs Zebra's sodium level is xxx. It's not brain surgery.
It took six months. Yes, six months. My treatment was delayed by six months because the result was filed under the wrong heading and the GP surgery didn't bother to reply to the clinic's requests. It only got sent at all because I chased it up and a receptionist discovered the mistake when I insisted that they DID have the results because the had already told me what they were! They had actually given me the wrong number but they did have the results.
OK, mistakes are made, letters get lost, things get overlooked. It was probably an isolated case, only it wasn't.
The POTS clinic referred me to the EDS Service in Sheffield. I waited but didn't receive an appointment. I don't know what exactly happened but I had to wait nine months for an appointment, then it was cancelled the day before and I had to wait another two weeks.
When I was finally seen I was deemed to complicated to be diagnosed by the EDS Service (which was set up to deal with complicated cases) and the consultant wrote to my GP asking me to be referred to a doctor at the Royal National Orthopaedic Hospital at Stanmore. It took a couple of weeks for the letter to reach my GP and another week for me to get an appointment with my GP to talk about it. Unfortunately the consultant at Stanmore had no appointments available on the Choose and Book system so they wrote a letter to ask if she would see me.
I waited four weeks but didn't hear anything so I telephoned the consultant's secretary only to be told that they were not making appointments at this time and there was a 22 weeks plus waiting list. I'm still waiting for an appointment.
The doctor at the EDS Service recommended that I go on the Stanmore inpatient rehab programme. I had heard very positive things about it and I was keen to go. I read the JHS and EDS forums regularly and was very disappointment to discover that the programme had closed to new referrals due to exceptional demand and when it reopens there would be a 56 week waiting list. Ironic really because EDS is so very rare...
It's not easy waiting, especially when you need treatment for a condition that causes daily pain and is difficult to cope with.
Last May when I developed severe and very painful muscle spasms in my neck I was referred to phsyio. The local clinic were not experienced enough to deal with a zebra like me so they passed me onto the local hospital. The hospital wrote to me with an appointment and then telephoned me to cancel it as I needed to see a rheumatology physio, not just an ordinary physio. They said they would make me a new appointment with the right person. I waited four weeks but heard nothing so I phoned them up. There was no record of me being passed onto the rheumatology physio. I was waiting for an appointment that was never going to be made. It's a good job I'm impatient otherwise I'd still be waiting!
Unfortunately the physio couldn't help me, she didn't even examine my neck, she just gave me vague advice about fitness and offered hydrotherapy. The problem got worse until the pain was unbearable and I lost sensation in my hands. I was put on morphine but it didn't help much. My GP was at a loss and all I could do was wait for my appointment at Stanmore, if it ever came.
I had an MRI but it was 'normal' and I begged my GP for a referral to neurology. She wrote to the Royal Hallamshire in Sheffield asking someone to see me. I received a letter in November informing me they had received my referral and they would contact me with an appointment in due course. It's been two months and I'm still waiting.
So I had a few bad experiences. Unfortunately they are not isolated cases. No-one likes to wait but waiting while you are ill and in pain it's even more difficult. It can also be expensive. In 2009 I was admitted to hospital with severe joint pain and I was diagnosed with Reactive Arthritis. The consultant prescribed a steroid injection, which I was to have before being discharged home.
The steroid injection was ordered, it was in stock at the hospital pharmacy, it just needed someone to deliver it to the ward and a nurse to administer it. Simple, yes? No. The injection didn't come to the ward with the pharmacy delivery and the pharmacy had closed so no-one else could go and get it.
The nurse explained I would have to spend another night in hospital, away from my young family. I was devastated. I was all ready to go home and I had to spend another night on the ward, taking up a bed I didn't need at unnecessary cost to the NHS.
That wasn't the only thing. The nurse told me even if the injection had arrived with the delivery, she couldn't have given it to me because the doctor hadn't signed it off properly on the computer. Oh the irony!
My experiences have been very frustrating but thankfully the rest of the world is a little more efficient.
I didn't fancy waiting 22 weeks for a diagnosis on the NHS so I went private. My parents kindly offered to pay the fees and I telephoned The Hypermobility Unit at St John and St Elizabeth's in London for an appointment. Professor Grahame, the UK's leading expert, was booked up for the next few weeks but I could see another highly respected doctor, Dr Hakim. How long would I have to wait?
It was the best medical consultation I have ever had. I was treated with respect and I was listened to. Dr Hakim explained everything in a way that I could understand, I was diagnosed with Joint Hypermobility Syndrome, I was prescribed medication for the muscle spasms in my neck and the doctor said he would consult his colleagues and find me a physiotherapist to help improve and manage my condition.
I wish I'd done it sooner. I could have saved myself six months of severe pain and suffering all for the price of £300.
I still want to see the consultant at Stanmore, my condition is complicated and she might be able to fit the final pieces of the jigsaw together. Unfortunately she doesn't have a private clinic so I guess I'll just have to wait...