There are sooo many ways the NHS could be improved and I hope I can highlight some of them here.
All too often it seems as though those in charge of hospitals have had a total logic bypass.
I need to have an MRI scan before they can operate, to give the surgeon at least some idea of where the blockages are and how complex the op might be. Unfortunately, in the words of my doctor the MRI department are "being obstructive." Despite me being an in-patient, they don't consider me to be ill enough to schedule the test as urgent!!! By the time they do actually run the test, I'll have been in hospital for nearly 2 weeks! 12 days to be precise.
The only reason I'm in hospital at all, is because no GP in the world will prescribe strong opiates and anti-emetics in the doses required for someone like me. At home, if I'm lucky, the GP will allow me 1 or 2 doses a day but no more. The injection works for around four hours, so even with two a day, that leaves 16 hours when I'm in pain! 16 hours!! All I need at the moment is to be kept comfortable until it's all over.
So, for 12 days I will have sat in a hospital bed, wasting the space for someone who might need it all, just because the doctors can't get a test done! Every day I spend in hospital cost the taxpayer a fortune too - I've heard claims that it costs over £1000 per day to keep someone in hospital, which, if true means an unnecessary cost to the NHS of £12,000 before they've even started to treat me.
Meanwhile the MRI scanners sit empty during the night and at weekends. why on earth wouldn't the hospital implement a 24 hour shift plan allowing the scanners to run all day and all night? Out-patients could be dealt with during the day, leaving the evenings and weekends free for in-patients. Just think of the money they could save not to mention easing the frustration of patients stuck in hospital unnecessarily.
What on earth about that is too complicated for them to realise all by themselves?
Wednesday, 17 November 2010
Pain 3
I wrote a while ago about pain and how impossible it is to describe. http://diaryofabenefitscrounger.blogspot.com/2010/10/pain.html
I think the thing that really helped to convey it best was when hospitals started to allow patients to administer their own drugs. My bowel is usually so inefficient, that any medications I take orally might not have any effect, or they might work several hours after I've taken them, leaving me at risk of overdosing.
Over the years, I've learnt to give myself injections, either just under the skin (sub cut) or into a muscle (IM). When I have Crohn's pain, nothing matters but getting rid of it. I barely notice the bee-sting of the needle or the cramp as the liquid analgesia seeps deep into my muscle - the pain I'm already in means that I barely even notice.
When I started giving myself injections on the ward, without fail, the nurse who had bought it would tell me how brave I was. Despite 12 inch abscesses, perforated bowel, adhesions, obstructions and twisted guts, it was pushing a needle into my own flesh that they could empathise with. They could see it and imagine how it might feel.
Now, when they say I'm brave for giving myself injections, I just ask them to imagine how bad the pain in my gut must be if I'm willing to inject myself to get rid of it.
I think the thing that really helped to convey it best was when hospitals started to allow patients to administer their own drugs. My bowel is usually so inefficient, that any medications I take orally might not have any effect, or they might work several hours after I've taken them, leaving me at risk of overdosing.
Over the years, I've learnt to give myself injections, either just under the skin (sub cut) or into a muscle (IM). When I have Crohn's pain, nothing matters but getting rid of it. I barely notice the bee-sting of the needle or the cramp as the liquid analgesia seeps deep into my muscle - the pain I'm already in means that I barely even notice.
When I started giving myself injections on the ward, without fail, the nurse who had bought it would tell me how brave I was. Despite 12 inch abscesses, perforated bowel, adhesions, obstructions and twisted guts, it was pushing a needle into my own flesh that they could empathise with. They could see it and imagine how it might feel.
Now, when they say I'm brave for giving myself injections, I just ask them to imagine how bad the pain in my gut must be if I'm willing to inject myself to get rid of it.
Monday, 15 November 2010
Pulp Fiction
We've all seen one of those B movies where another species live unseen alongside humans. Sometimes they are aliens, sometimes they are angels, but the formula is always the same.
The grey, concrete buildings of Addenbrookes are crammed daily with enough staff and patients to populate a small town. The campus is vast and has it's own shopping centre, burger bar and coffee houses. On a rare good day, a patient could spend the day shopping, having lunch and pretending they're not really in hospital at all.
If you were to walk through the doors into the vast concourse and stop to watch for a moment, you might think you've stumbled into the Ealing Studios.
The rainbow of staff, in their various uniforms or well tailored suits stride out with confidence across the marble floor. Their hair shines, their eyes glow, they are charged with determination. They stand tall with the restless air of those who have somewhere important to be. They don't see what you, the viewer can see, standing by the door.
You can see the others.
The others have loose flowing robes and strange machines. Their eyes look haunted and dull, their slow movements seem a lethargic parody of the bustle of the staff. They stoop and they shuffle, their hopes and dreams suspended indefinitely.
The two exist side by side but neither seem aware of the other at all.
The grey, concrete buildings of Addenbrookes are crammed daily with enough staff and patients to populate a small town. The campus is vast and has it's own shopping centre, burger bar and coffee houses. On a rare good day, a patient could spend the day shopping, having lunch and pretending they're not really in hospital at all.
If you were to walk through the doors into the vast concourse and stop to watch for a moment, you might think you've stumbled into the Ealing Studios.
The rainbow of staff, in their various uniforms or well tailored suits stride out with confidence across the marble floor. Their hair shines, their eyes glow, they are charged with determination. They stand tall with the restless air of those who have somewhere important to be. They don't see what you, the viewer can see, standing by the door.
You can see the others.
The others have loose flowing robes and strange machines. Their eyes look haunted and dull, their slow movements seem a lethargic parody of the bustle of the staff. They stoop and they shuffle, their hopes and dreams suspended indefinitely.
The two exist side by side but neither seem aware of the other at all.
Sunday, 14 November 2010
Pain 2
I have the most excruciating pain. It's in my chest and there's nothing they can do.
There are no drugs powerful enough to even take the edge off and no matter what position I sit in, whatever distractions I devise, it overshadows everything.
3 Hours ago, I stood outside the lift back to my ward and said goodbye to my husband and my babies. The 6 year old was devastated, crying and clinging to me and begging me to come home with them. Like the grown up I supposedly am, I had to gently prise his little arms off my leg and smile and tell him everything would be fine and I'd be home before he knew it.
By the time I stepped into the lift, I crumpled, but sod's law made the doors open up again and there was his little face, looking hopeful that I'd changed my mind. I dredged up one last beaming smile and then played hide and seek as the door slowly shut us away from one another.
There are no drugs powerful enough to even take the edge off and no matter what position I sit in, whatever distractions I devise, it overshadows everything.
3 Hours ago, I stood outside the lift back to my ward and said goodbye to my husband and my babies. The 6 year old was devastated, crying and clinging to me and begging me to come home with them. Like the grown up I supposedly am, I had to gently prise his little arms off my leg and smile and tell him everything would be fine and I'd be home before he knew it.
By the time I stepped into the lift, I crumpled, but sod's law made the doors open up again and there was his little face, looking hopeful that I'd changed my mind. I dredged up one last beaming smile and then played hide and seek as the door slowly shut us away from one another.
Secret Garden
I have a secret garden.
It's tucked away, behind the hospital, only reached by a maze of corridors. It's a long walk. By the time I get to the door and open it onto the real world I'm tired, but the second I feel the cold night air on my skin, carrying away the hospital-stench of sickness and decay, I relax.
It's quiet. The whirrs and beeps and shouts and buzzers all left far behind. There are benches around a beautiful statue and the borders are planted with rosemary, sage, roses, violets and bay. The trees give shade and remind me that they will still be here long after I've gone. As the buds start to form in spring I will be well again and Addenbrookes will be long forgotten.
No-one seems to remember it's there. It gives me the one thing no hospital can. Peace.
I always sit alone, relieved and grateful for the solitude, for the rare moments of escape and it's crossed my mind that maybe it doesn't really exist at all. Maybe, it's all in my mind.
It's tucked away, behind the hospital, only reached by a maze of corridors. It's a long walk. By the time I get to the door and open it onto the real world I'm tired, but the second I feel the cold night air on my skin, carrying away the hospital-stench of sickness and decay, I relax.
It's quiet. The whirrs and beeps and shouts and buzzers all left far behind. There are benches around a beautiful statue and the borders are planted with rosemary, sage, roses, violets and bay. The trees give shade and remind me that they will still be here long after I've gone. As the buds start to form in spring I will be well again and Addenbrookes will be long forgotten.
No-one seems to remember it's there. It gives me the one thing no hospital can. Peace.
I always sit alone, relieved and grateful for the solitude, for the rare moments of escape and it's crossed my mind that maybe it doesn't really exist at all. Maybe, it's all in my mind.
Saturday, 13 November 2010
Spoon Theory
Last night, I came across the most extraordinary article.
It came from the blog of Christine Miserandino and it is the best explanation I've ever read of the sort of lives us sickies live.
I also think she writes beautifully and there are lots of bits and pieces at this site worth a read.
If you are one of my sick or disabled readers, you might even have come across it already - I don't know how I could possibly have missed it until now. There are now thousands of "spoonies" and I've already used the phrase "running out of spoons" about 4 times today.
Hopefully, it might help some of us to finally be able to put into words how different our lives are.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
It came from the blog of Christine Miserandino and it is the best explanation I've ever read of the sort of lives us sickies live.
I also think she writes beautifully and there are lots of bits and pieces at this site worth a read.
If you are one of my sick or disabled readers, you might even have come across it already - I don't know how I could possibly have missed it until now. There are now thousands of "spoonies" and I've already used the phrase "running out of spoons" about 4 times today.
Hopefully, it might help some of us to finally be able to put into words how different our lives are.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
Friday, 12 November 2010
Liberty
What a strange thing it is to be a patient.
Here we are in my little bay on ward C6, four ordinary women, various ages, various professions, various symptoms.
Just a few days ago we were free. We chose when to eat, when to sleep, what to wear. We never stopped to think about our freedom, it was just a part of the chilly autumn mornings like the frost and falling leaves.
Now we are here. Incarcerated , observed and restricted. We can't leave. We can't get a nice chilled glass of Chardonnay as we normally might. We can't boil a kettle in case we scald ourselves. We can't sleep in in the mornings and we can't stay up late at night. (Lights go off at 11pm.) We can't keep our own meds in our own bags and we can't make a cup of tea when we fancy one. We can't see our friends or our family at a whim - we have to arrange "visits."
We can't smoke, though of course we all do. Like a scene from The Night of the Living Dead, we huddle together in a drafty bus stop, our various bleeping machines supporting life through tubes and pumps. We are a motley crew, us lawyers and teachers and bin men and alcoholics, anonymous yet resplendent in embarrassing pyjamas and novelty slippers. We are levelled by our shared horrors, united by fear.
Our hairstyles, moustaches and beards reach levels of neglect, that, frankly, would not be acceptable in the outside world, but we are beyond noticing, pre-occupied as we are, with survival . We get surprisingly attached to one another, become intimate through our shared dependency.
Here we are in my little bay on ward C6, four ordinary women, various ages, various professions, various symptoms.
Just a few days ago we were free. We chose when to eat, when to sleep, what to wear. We never stopped to think about our freedom, it was just a part of the chilly autumn mornings like the frost and falling leaves.
Now we are here. Incarcerated , observed and restricted. We can't leave. We can't get a nice chilled glass of Chardonnay as we normally might. We can't boil a kettle in case we scald ourselves. We can't sleep in in the mornings and we can't stay up late at night. (Lights go off at 11pm.) We can't keep our own meds in our own bags and we can't make a cup of tea when we fancy one. We can't see our friends or our family at a whim - we have to arrange "visits."
We can't smoke, though of course we all do. Like a scene from The Night of the Living Dead, we huddle together in a drafty bus stop, our various bleeping machines supporting life through tubes and pumps. We are a motley crew, us lawyers and teachers and bin men and alcoholics, anonymous yet resplendent in embarrassing pyjamas and novelty slippers. We are levelled by our shared horrors, united by fear.
Our hairstyles, moustaches and beards reach levels of neglect, that, frankly, would not be acceptable in the outside world, but we are beyond noticing, pre-occupied as we are, with survival . We get surprisingly attached to one another, become intimate through our shared dependency.
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