By Royal Appointment II
As NHS hospitals go, I'm a fan of the Royal Free. I've been going there regularly since last July about this swelling in my neck and I'm usually pretty impressed: I've always been seen within ten minutes of my scheduled appointment, the facilities and equipment are high-grade, the staff have always been kind, and, on a medical level, clearly at the top of their field. It's a bit of a trek over there from Crouch End - a 20 minute walk to Crouch Hill station for the half-hourly service to Gospel Oak, and a connecting service from there on to Hampstead Heath. Door to door, it takes an hour to travel a distance of just a few miles, though after a few weary years in the capital, I've grown to accept that as the norm getting around in London.
The auto-immune disease I have is not serious in the grand scale of things and it's supposed to just take care of itself, given a few years, and regular blood tests and scans. I usually feel perfectly OK while making those long journeys - an afternoon off work and the chance to catch up on some reading are the biggest disruptions. What I want to write about today is an extension of what Dave discussed yesterday and how the hospital appointments system operates if you are in fact suffering from the worst illness in the world.
My mother died of breast cancer on April 2nd, 2005. She was 58 years old. Her cancer wasn't detected until it had metastasised to her liver and her left eye, and was subsequently found to be in her bones as well. The delay and frustration of the process of even coming to this devastating diagnosis must still be written about; there's only so much you can mention in a single sitting and when it's all still so unbearably raw.
I'm thinking particularly of an incident in January this year. Mum's eye had shown little response to chemotherapy and a referral to the country's top eye oncologist at Bart's hospital in London had resulted in a course of radiotherapy being prescribed. I went with her to see the radiotherapy consultant for her preliminary appointment. My parents had to travel 30 miles into London from Bishop's Stortford. Dad took the day off work to drive her into town as Mum's loss of vision meant she was no longer able to drive, and after four sessions of chemotherapy she was simply too ill to cope with a train journey. Thankfully Mum had a disabled badge for her car so they were able to park directly outside the hospital.
But then we had to sit and wait no less than TWO HOURS in a hot, stuffy and massively overcrowded waiting room before Mum was seen by the doctor. Every person in there presumably had cancer needing drastic treatment and so it was impossible to kick up a fuss and demand to be seen any sooner. When she finally did see the doctor, he said that before starting the radiotherapy, she would have to have another MRI scan to see if the cancer had also spread to her brain. Statistically this was extremely likely as it had by this point reached both eyes, though was only visibly affecting one. Mum then had to walk from the outpatients department to the MRI unit to make an appointment for an "urgent" scan, the doctor wanting it done within a week. Mum was anaemic, weak, breathless and exhausted. Bart's is a big place. We had to stop twice for rests around its central quadrangle; thankfully it is bordered by benches. I have no idea why the receptionist in outpatients couldn't have phoned the MRI department on Mum's behalf to make the appointment.
Once we finally got to the MRI unit, it turned out that the first appointment available for an "urgent scan" was in three weeks' time. There was absolutely nobody in the waiting room - I wanted to scream at them to switch the bloody machine on and do it there and then. I would have operated it myself if I could. But I didn't, and Mum and Dad began their long journey home. Mum wanted to go to the bathroom before they set off - but as the nearest toilet was 200 metres away and down another flight of stairs, it was simply too far for her to walk to so she had to wait until they got home.
As a footnote to all of this, when the time of the scan finally came around, Mum received a telephone call from Bart's the day before to say that the scanner had broken and that all appointments had therefore been cancelled. It was a further ten days before the machine was repaired - and Mum's scan did show that, yes, by now, her brain was also showing a patch of cancerous activity. Three weeks later, her radiotherapy finally started. Daily journeys up to London for two weeks, often waiting for hours before a machine became available for her 15 minutes of treatment. It was now the middle of February, and she'd seen the eye oncologist the previous November. In fact, the day her treatment started was the day of her follow-up appointment with the eye oncologist - he'd planned on the radiotherapy being finished with long before then. By the time her new follow-up appointment was sent, Mum would be dead.
The auto-immune disease I have is not serious in the grand scale of things and it's supposed to just take care of itself, given a few years, and regular blood tests and scans. I usually feel perfectly OK while making those long journeys - an afternoon off work and the chance to catch up on some reading are the biggest disruptions. What I want to write about today is an extension of what Dave discussed yesterday and how the hospital appointments system operates if you are in fact suffering from the worst illness in the world.
My mother died of breast cancer on April 2nd, 2005. She was 58 years old. Her cancer wasn't detected until it had metastasised to her liver and her left eye, and was subsequently found to be in her bones as well. The delay and frustration of the process of even coming to this devastating diagnosis must still be written about; there's only so much you can mention in a single sitting and when it's all still so unbearably raw.
I'm thinking particularly of an incident in January this year. Mum's eye had shown little response to chemotherapy and a referral to the country's top eye oncologist at Bart's hospital in London had resulted in a course of radiotherapy being prescribed. I went with her to see the radiotherapy consultant for her preliminary appointment. My parents had to travel 30 miles into London from Bishop's Stortford. Dad took the day off work to drive her into town as Mum's loss of vision meant she was no longer able to drive, and after four sessions of chemotherapy she was simply too ill to cope with a train journey. Thankfully Mum had a disabled badge for her car so they were able to park directly outside the hospital.
But then we had to sit and wait no less than TWO HOURS in a hot, stuffy and massively overcrowded waiting room before Mum was seen by the doctor. Every person in there presumably had cancer needing drastic treatment and so it was impossible to kick up a fuss and demand to be seen any sooner. When she finally did see the doctor, he said that before starting the radiotherapy, she would have to have another MRI scan to see if the cancer had also spread to her brain. Statistically this was extremely likely as it had by this point reached both eyes, though was only visibly affecting one. Mum then had to walk from the outpatients department to the MRI unit to make an appointment for an "urgent" scan, the doctor wanting it done within a week. Mum was anaemic, weak, breathless and exhausted. Bart's is a big place. We had to stop twice for rests around its central quadrangle; thankfully it is bordered by benches. I have no idea why the receptionist in outpatients couldn't have phoned the MRI department on Mum's behalf to make the appointment.
Once we finally got to the MRI unit, it turned out that the first appointment available for an "urgent scan" was in three weeks' time. There was absolutely nobody in the waiting room - I wanted to scream at them to switch the bloody machine on and do it there and then. I would have operated it myself if I could. But I didn't, and Mum and Dad began their long journey home. Mum wanted to go to the bathroom before they set off - but as the nearest toilet was 200 metres away and down another flight of stairs, it was simply too far for her to walk to so she had to wait until they got home.
As a footnote to all of this, when the time of the scan finally came around, Mum received a telephone call from Bart's the day before to say that the scanner had broken and that all appointments had therefore been cancelled. It was a further ten days before the machine was repaired - and Mum's scan did show that, yes, by now, her brain was also showing a patch of cancerous activity. Three weeks later, her radiotherapy finally started. Daily journeys up to London for two weeks, often waiting for hours before a machine became available for her 15 minutes of treatment. It was now the middle of February, and she'd seen the eye oncologist the previous November. In fact, the day her treatment started was the day of her follow-up appointment with the eye oncologist - he'd planned on the radiotherapy being finished with long before then. By the time her new follow-up appointment was sent, Mum would be dead.
posted by Rebecca Dodgson | 12:32 am
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