lizziec: (Frazer-doomed)
I've written to my MP about the Health and Social Care Bill that's currently wending its way through parliament. I do not hold out high hopes that he will vote against it, as he's a Conservative MP who tends to vote with the whip, but I'm hoping he'll take notice. I've tried to be respectful and outline clearly and concisely why I disagree with the bill. At least he can't ignore me because I was rude or using a form letter.

If you're in the UK and disagree with the H&SC bill, which will lead to greater private involvement in the NHS and could possibly lead to the end of the NHS, then please please please take the time to let your MP know how you feel about it using Write to Them. If you need to (lack of spoons/whatever) then please feel free to adapt my letter to your own views.

--

Dear Mr Brazier,

As a constituent, I would like to express my concern about the Health and Social Care bill currently moving through Parliament, and respectfully ask that you vote against it. If you do not feel that you can do this, I would very much appreciate it if you would please delay voting for it until after the Risk Register has been released and all the information available about the possible consequences of the Health and Social Care bill is available. I would also appreciate it if you would put pressure on the Government to release the Risk Register, in accordance with the recent ruling by the Information Commissioner, which was upheld on appeal. Unless this available for everyone to view before the legislation is passed I will not be reassured that all possible information was available for a properly informed choice to be made before the bill is passed into law.

All the reasons I disagree are outlined in here )

This entry was originally posted at http://lizziec.dreamwidth.org/434121.html. There are currently comment count unavailable comments on the original entry.
lizziec: (Frazer-doomed)
I've written to my MP about the Health and Social Care Bill that's currently wending its way through parliament. I do not hold out high hopes that he will vote against it, as he's a Conservative MP who tends to vote with the whip, but I'm hoping he'll take notice. I've tried to be respectful and outline clearly and concisely why I disagree with the bill. At least he can't ignore me because I was rude or using a form letter.

If you're in the UK and disagree with the H&SC bill, which will lead to greater private involvement in the NHS and could possibly lead to the end of the NHS, then please please please take the time to let your MP know how you feel about it using Write to Them. If you need to (lack of spoons/whatever) then please feel free to adapt my letter to your own views.

--

Dear Mr Brazier,

As a constituent, I would like to express my concern about the Health and Social Care bill currently moving through Parliament, and respectfully ask that you vote against it. If you do not feel that you can do this, I would very much appreciate it if you would please delay voting for it until after the Risk Register has been released and all the information available about the possible consequences of the Health and Social Care bill is available. I would also appreciate it if you would put pressure on the Government to release the Risk Register, in accordance with the recent ruling by the Information Commissioner, which was upheld on appeal. Unless this available for everyone to view before the legislation is passed I will not be reassured that all possible information was available for a properly informed choice to be made before the bill is passed into law.

All the reasons I disagree are outlined in here )
lizziec: (cartoon penguins stealing sanity)
First things first, Phil's first driving lesson sounds like it went ok. Most of what he describes pretty much sums up my first lesson, so I'm not overly worried. He's on mum's insurance now, so I'll be taking him out (in her car) for some practicing Real Soon Now.

Apologies if you have read this somewhere else. Mum copy pasted an email I sent out about this to her friends list on LJ and facebook, so I will be repeating a lot of it. It's rather long, please bare bear stay with me.

rambling )

We were seen quickly by a consultant Mr Williamson who was utterly lovely and spent a good half hour with us, telling us actually very little in terms of hard fact, but making us feel better anyway )

Each hospital has its downsides.

In which I wibble prematurely about the logistics of various hospitals )

So anyway, the registrar is chasing down mum's results and then we should have a plan. A follow up appointment has been booked for the same clinic next week, though tomorrow (Friday) will tell us whether or not we'll make it to that appointment. Basically, when they get the results tomorrow, if it turns out to be one of a list of uber bad (as opposed to just really bad) (he didn't tell us what was on that list) then we'll get a call in the morning telling us to get to a hospital (the Marsden or St Georges) ASAP to start treatment immediately... which is pretty damn scary to contemplate. If that happens then we won't need to make the appointment next Thursday.

Long brain dump so far, sorry. There's still some to go.

Macmillan nurse and dietician )

Came back, and in between making a nusance of myself by making mum eat every two hours, I've made all the phonecalls to tell people how she is, written emails for other people, shopped and cooked. Now I'm very tired and grumpy, and still rather worried actually. Mum's feeling a bit better today in that she was convinced they'd tell her she would die tomorrow, which they didn't. Not in the physical sense though, as she's been hugely sick tonight (she thinks it's caused by the new painkillers, which were subbed for the co-codomol which was giving her nightmares). Hopefully we'll get the GP (who we're seeing tomorrow) to give us yet another prescription for painkillers and we can find something that works without making mum too sleepy or sick. And hopefully she got some nutrition out of the food I made her eat before she threw it all up again.

Up early for GP tomorrow, and then if there's no urgent "get here now" call by lunchtime I'll meander back to Canterbury for two days of R&R (and things that actually need to be done) before coming back here again.

Feeling pretty low and tired right now. Hopefully some sleep and time in Canterbury will help with that. And if we get the urgent call, then I'll be seeing ben regardless and that may help too.

ETA: I appear to be addicted to parentheses. Wonder if I should be concerned.

ETA2: Oops. Entry 1700 words. I've written actual academic essays shorter.

ETA3: Have a cold. Most unimpressed.

ETA: 12/07/11 No longer filtered
lizziec: (cartoon penguins stealing sanity)
First things first, Phil's first driving lesson sounds like it went ok. Most of what he describes pretty much sums up my first lesson, so I'm not overly worried. He's on mum's insurance now, so I'll be taking him out (in her car) for some practicing Real Soon Now.

Apologies if you have read this somewhere else. Mum copy pasted an email I sent out about this to her friends list on LJ and facebook, so I will be repeating a lot of it. It's rather long, please bare bear stay with me.

rambling )

We were seen quickly by a consultant Mr Williamson who was utterly lovely and spent a good half hour with us, telling us actually very little in terms of hard fact, but making us feel better anyway )

Each hospital has its downsides.

In which I wibble prematurely about the logistics of various hospitals )

So anyway, the registrar is chasing down mum's results and then we should have a plan. A follow up appointment has been booked for the same clinic next week, though tomorrow (Friday) will tell us whether or not we'll make it to that appointment. Basically, when they get the results tomorrow, if it turns out to be one of a list of uber bad (as opposed to just really bad) (he didn't tell us what was on that list) then we'll get a call in the morning telling us to get to a hospital (the Marsden or St Georges) ASAP to start treatment immediately... which is pretty damn scary to contemplate. If that happens then we won't need to make the appointment next Thursday.

Long brain dump so far, sorry. There's still some to go.

Macmillan nurse and dietician )

Came back, and in between making a nusance of myself by making mum eat every two hours, I've made all the phonecalls to tell people how she is, written emails for other people, shopped and cooked. Now I'm very tired and grumpy, and still rather worried actually. Mum's feeling a bit better today in that she was convinced they'd tell her she would die tomorrow, which they didn't. Not in the physical sense though, as she's been hugely sick tonight (she thinks it's caused by the new painkillers, which were subbed for the co-codomol which was giving her nightmares). Hopefully we'll get the GP (who we're seeing tomorrow) to give us yet another prescription for painkillers and we can find something that works without making mum too sleepy or sick. And hopefully she got some nutrition out of the food I made her eat before she threw it all up again.

Up early for GP tomorrow, and then if there's no urgent "get here now" call by lunchtime I'll meander back to Canterbury for two days of R&R (and things that actually need to be done) before coming back here again.

Feeling pretty low and tired right now. Hopefully some sleep and time in Canterbury will help with that. And if we get the urgent call, then I'll be seeing ben regardless and that may help too.

ETA: I appear to be addicted to parentheses. Wonder if I should be concerned.

ETA2: Oops. Entry 1700 words. I've written actual academic essays shorter.

ETA3: Have a cold. Most unimpressed.

ETA: 12/07/11 No longer filtered
lizziec: (animals - gerbil - stan eating)
I slept the clock around last night. I'd gone to bed at 1am on Sunday night and got up at 5:30 and was clearly shattered by the end of the day as I fell asleep at about 10pm and woke up at around 10am, feeling much better, though from there I've become progressively fed up, grumpy and down. I suppose it's just one of those days.

Mum was released from the Day Surgery Unit at around 2 or 3pm yesterday feeling "as if [she] could run a mile". I suppose that's uber hospital drugs for you. The doctor took several samples of the tumour and while he was there he cleared out a bunch of gunk (mostly pus as I understand it) from mum's sinuses, so she feels much less congested at least, though it hasn't helped with any of the major tumour symptoms (the numbness and muscle weakness in her face, eye, nose, mouth; difficulty eating; deafness in one ear; shaking [a newish symptom] etc), it has slowed the perma-nosebleed to almost nothing, which I think is a great relief to us. Mr Tesco delivered some supplies with the groceries (namely micropore and gauze) so if it starts again we can rig up our own nose sling in imitation of the one they rigged up for mum yesterday at the hospital.

Results of the biopsy are due Thursday and my aunt (who has worked at St Georges and still volunteers there) told me yesterday that she was arranging everything. She's scouted out the best dropping off place, is arranging for a wheelchair to meet us there in case mum's unsteady on her feet (she's needed a wheelchair the last two times we've been to hospital) and tracked down the medical receptionist/admin type person who deals with the specific clinic and they're making sure that everything that is needed is there as a favour to my aunt. I guess knowing someone really can make a difference, and let's be frank - having a medical receptionist/secretary/admin person on your side can make a real difference.

While mum was feeling good I managed to have a couple of conversations with her about stuff that needed to be done, people to see and phone calls to make. It was apparently the perfect time as she felt like listening and was also feeling pessmistic about her prognosis, which while not ideal, meant that she gave some of my ideas the thought they at least deserved.

Got a response from Careline (attached to Diabetes UK) today, who I contacted yesterday with a panicked enquiry about the stupid diabetic nurses' comments that all weight loss was good when it came to type 2. Careline basically agreed with Macmillan (and directed me to them) about how uncontrolled, cancer related weight loss is bad and mum should see about getting referred to a proper, specialist dietician as a priority. It's been added to a list of things to ask her GP about when she next sees him (along with asking for different/better anti-emetics as the ones she has don't seem to work well and make her very sleepy). Take that stupid diabetes nurse!

As I mentioned I seem to have spent a good deal of this afternoon getting wound up with various things and increasingly fed up. Not entirely sure why everything is getting to me today, but it's not helpful. At one point I had a long list of things I was annoyed and fed up about. Thankfully reeling the list off to [livejournal.com profile] benc over the phone and a lesser list to [livejournal.com profile] red_pill in person helped a little.

Pondering going home (Canterbury) on Thursday night, but it all depends on what happens on Thursday's ENT appointment. I'm finding it difficult to see past that at the moment, which I suppose (looking at it objectively) isn't helping my mood much.

Phil's first driving lesson tomorrow, which is rather scary. Coulsdon and Wallington, you have been warned. Stay off the roads :P

ETA: 12/07/11 No longer filtered
lizziec: (animals - gerbil - stan eating)
I slept the clock around last night. I'd gone to bed at 1am on Sunday night and got up at 5:30 and was clearly shattered by the end of the day as I fell asleep at about 10pm and woke up at around 10am, feeling much better, though from there I've become progressively fed up, grumpy and down. I suppose it's just one of those days.

Mum was released from the Day Surgery Unit at around 2 or 3pm yesterday feeling "as if [she] could run a mile". I suppose that's uber hospital drugs for you. The doctor took several samples of the tumour and while he was there he cleared out a bunch of gunk (mostly pus as I understand it) from mum's sinuses, so she feels much less congested at least, though it hasn't helped with any of the major tumour symptoms (the numbness and muscle weakness in her face, eye, nose, mouth; difficulty eating; deafness in one ear; shaking [a newish symptom] etc), it has slowed the perma-nosebleed to almost nothing, which I think is a great relief to us. Mr Tesco delivered some supplies with the groceries (namely micropore and gauze) so if it starts again we can rig up our own nose sling in imitation of the one they rigged up for mum yesterday at the hospital.

Results of the biopsy are due Thursday and my aunt (who has worked at St Georges and still volunteers there) told me yesterday that she was arranging everything. She's scouted out the best dropping off place, is arranging for a wheelchair to meet us there in case mum's unsteady on her feet (she's needed a wheelchair the last two times we've been to hospital) and tracked down the medical receptionist/admin type person who deals with the specific clinic and they're making sure that everything that is needed is there as a favour to my aunt. I guess knowing someone really can make a difference, and let's be frank - having a medical receptionist/secretary/admin person on your side can make a real difference.

While mum was feeling good I managed to have a couple of conversations with her about stuff that needed to be done, people to see and phone calls to make. It was apparently the perfect time as she felt like listening and was also feeling pessmistic about her prognosis, which while not ideal, meant that she gave some of my ideas the thought they at least deserved.

Got a response from Careline (attached to Diabetes UK) today, who I contacted yesterday with a panicked enquiry about the stupid diabetic nurses' comments that all weight loss was good when it came to type 2. Careline basically agreed with Macmillan (and directed me to them) about how uncontrolled, cancer related weight loss is bad and mum should see about getting referred to a proper, specialist dietician as a priority. It's been added to a list of things to ask her GP about when she next sees him (along with asking for different/better anti-emetics as the ones she has don't seem to work well and make her very sleepy). Take that stupid diabetes nurse!

As I mentioned I seem to have spent a good deal of this afternoon getting wound up with various things and increasingly fed up. Not entirely sure why everything is getting to me today, but it's not helpful. At one point I had a long list of things I was annoyed and fed up about. Thankfully reeling the list off to [livejournal.com profile] benc over the phone and a lesser list to [livejournal.com profile] red_pill in person helped a little.

Pondering going home (Canterbury) on Thursday night, but it all depends on what happens on Thursday's ENT appointment. I'm finding it difficult to see past that at the moment, which I suppose (looking at it objectively) isn't helping my mood much.

Phil's first driving lesson tomorrow, which is rather scary. Coulsdon and Wallington, you have been warned. Stay off the roads :P

ETA: 12/07/11 No longer filtered
lizziec: (Stargate SG1 Jack O'Neill (two l's ;)))
Currently hiding away in a Starbucks in Croydon while mum is having the biopsy done at the day surgery unit. I left her at about 9am when they took her through to pre-op, which was further than I was allowed to go, though apparently they didn't think she would actually be done until about 11ish.

Taking anti sickness pills didn't seem to work as this morning mum was sick on arriving at the hospital, though thankfully into the bowl I've been carring in the car rather than getting it on the car. Ended up taking her up to the DSU in a wheelchair though, as it left her very weak. Despite telling staff on Friday, and reminding them numerous times this morning that mum is mostly deaf in one ear now and telling them which side to speak to, they kept talking to her on her deaf side, with one nurse whispering her questions into that ear and then wondering why mum didn't respond. Gah.

They're going to use two anaesthetists, which worried me (and I think mum too - she said she wondered if they thought there was another tumour in her throat), though people on irc tell me it's actually quite usual, so I'm a bit more chilled than I was when I left her.

Found out today that the pretty useless diabetic nurse who I was annoyed at anyway told mum last week that all weight loss was good, which left me quite grrrry. It came up because I noticed when doing up mum's hospital gown that it was much looser than last time she had a biopsy. Last time it was fairly tight at the top on the loosest tie they had there, and didn't do up at the back. This time it was loose even on the tightest tie they had there and left no gap at the back. It was a really obvious sign to me of the speed at which she is losing weight at the moment, which is why I keep quietly and not so quietly wibbling about it.

I ended up calling Macmillan (thankfully calls to them are free on major mobile networks) when I got out to the car and wibbled at a cancer nurse there for half an hour. She said that while weight loss may be good from a diabetes pov "this (cancer/not eating/not keeping stuff down) is not how she should be losing weight" and agreed that she probably needs more calories than she's getting/keeping down. The Macmillan lady said I should push for mum to see a nutritionist, though she said that someone would probably refer mum anyway at some point. She also said to be realistic (because of mum's mouth problems she can't eat much veg, or fruit [down to soft fruits like bananas and raspberries, even strawberries are now too hard]) that mum wasn't going to get her five a day and I shouldn't worry about that too much, but to get her to eat what fruit and veg she could. She also said that I should give mum high fat (i.e. regular, rather than diet) food, and aim to keep the sugar in the food down, which sounds like good advice as far as getting calories into her but without messing up her blood sugar too much. At least, I hope it's good advice. It sounded it. Depending on what happens this week I'll try to get mum to her GP and explain (or get her to explain) I'm concerned about mum's eating and weight loss. Hopefully he'll be less blinkered by "losing weight good for type 2 diabetes" :/

ETA: 12/07/11 No longer filtered
lizziec: (Stargate SG1 Jack O'Neill (two l's ;)))
Currently hiding away in a Starbucks in Croydon while mum is having the biopsy done at the day surgery unit. I left her at about 9am when they took her through to pre-op, which was further than I was allowed to go, though apparently they didn't think she would actually be done until about 11ish.

Taking anti sickness pills didn't seem to work as this morning mum was sick on arriving at the hospital, though thankfully into the bowl I've been carring in the car rather than getting it on the car. Ended up taking her up to the DSU in a wheelchair though, as it left her very weak. Despite telling staff on Friday, and reminding them numerous times this morning that mum is mostly deaf in one ear now and telling them which side to speak to, they kept talking to her on her deaf side, with one nurse whispering her questions into that ear and then wondering why mum didn't respond. Gah.

They're going to use two anaesthetists, which worried me (and I think mum too - she said she wondered if they thought there was another tumour in her throat), though people on irc tell me it's actually quite usual, so I'm a bit more chilled than I was when I left her.

Found out today that the pretty useless diabetic nurse who I was annoyed at anyway told mum last week that all weight loss was good, which left me quite grrrry. It came up because I noticed when doing up mum's hospital gown that it was much looser than last time she had a biopsy. Last time it was fairly tight at the top on the loosest tie they had there, and didn't do up at the back. This time it was loose even on the tightest tie they had there and left no gap at the back. It was a really obvious sign to me of the speed at which she is losing weight at the moment, which is why I keep quietly and not so quietly wibbling about it.

I ended up calling Macmillan (thankfully calls to them are free on major mobile networks) when I got out to the car and wibbled at a cancer nurse there for half an hour. She said that while weight loss may be good from a diabetes pov "this (cancer/not eating/not keeping stuff down) is not how she should be losing weight" and agreed that she probably needs more calories than she's getting/keeping down. The Macmillan lady said I should push for mum to see a nutritionist, though she said that someone would probably refer mum anyway at some point. She also said to be realistic (because of mum's mouth problems she can't eat much veg, or fruit [down to soft fruits like bananas and raspberries, even strawberries are now too hard]) that mum wasn't going to get her five a day and I shouldn't worry about that too much, but to get her to eat what fruit and veg she could. She also said that I should give mum high fat (i.e. regular, rather than diet) food, and aim to keep the sugar in the food down, which sounds like good advice as far as getting calories into her but without messing up her blood sugar too much. At least, I hope it's good advice. It sounded it. Depending on what happens this week I'll try to get mum to her GP and explain (or get her to explain) I'm concerned about mum's eating and weight loss. Hopefully he'll be less blinkered by "losing weight good for type 2 diabetes" :/

ETA: 12/07/11 No longer filtered
lizziec: (NCIS gibbs abby protection)
Got to Mayday for the hastily arranged ENT appointment about half an hour early and were seen immediately by the doctor. I can't say I was overly impressed with his bedside manner, though it improved some way into the appointment where we reached a mutual understanding. A little more on that further in.

To start with the doctor was very brisk, and wanted to know mum's history with this problem starting from the beginning which upset and frustrated her, so I'm not sure he got a complete picture. Then without any prep time at all went to stick a camera up her nose to see what was going on up there, which completely understandably completely upset mum. She started to cry and said that she hadn't expected that - which was fair as we were just told to be there, no details more than that - and the doctor got kind of frustrated and said that he'd only been handed the case the evening before and had squeezed us into his clinic as a favour to the Neurologist that mum had seen before and was seeing lots more patients in clinic today than he had timeslots for. I guess that explains why we got seen as soon as we got there rather than at a specific time. After we understood he was rushed and he understood mum was scared and uninformed about what the appointment would involve he became much better bedside manner wise. It's a shame it took tears and stuff to get to that point.

He had a go at getting the camera up mum's left nostril, but it didn't go very far as he kept hitting something which I believe was the tumour (he got mum to have a go at blowing her nose, but the blockage didn't move at all), and the attempt looked like it hurt an awful lot (judging by the way mum gripped my hand). It went fine up the right nostril, and appeared to hurt mum much less.

He appeared rather concerned and disappeared for a bit to arrange some things, and then came back to his office to make calls to further arrange things while we were in there. It amused me to hear him sweet talking nurses in much the same way I sweet talk people when I need something.

Anyway, he'd thought that the tumour needed biopsying asap and managed to squeeze mum into his Monday morning list for a biopsy under a general anaesthetic. The rest of the time at the hospital involved heading to the day surgery ward to get pre-admitted and see an anaesthetist (though not the one who'll be doing mum tomorrow) to be checked anaesthetic wise. Was informed that the major risk is that it doesn't stop bleeding after the biopsy is taken and if that happens her nose (through which the biopsy is being taken) will be packed and she'll be sent from Mayday (in Croydon, where all the appointments so far have been, and where the biopsy will be done tomorrow) to St Georges (in Tooting) to be admitted. Really hope that won't happen, but am pondering putting a bag of jammies and washing supplies in the car tomorrow morning just in case, in the hope being prepared will ward off problems.

The follow up to the biopsy will be at St Georges, where the doctor is actually based. He told us how to get there by public transport as he explained that the parking situation (and traffic on the way) is pretty bad, even for him. It was good of him to explain the transport options but I really don't think that mum is up to public transport at the moment. She had a turn while at Mayday on Friday and needed a wheelchair to get her out to the car again. Managed to sort out alternative arrangements that don't involve public transport, thankfully. My auntie and uncle live very very close (a mile or so) to St Georges, and my auntie has worked there (and still volunteers there) so we'll be parking the car at their house and my uncle will drop us off and pick us up, avoiding, hopefully, the parking problems at the hospital without exhausting mum.

All told, it looks like we'll know by Thursday afternoon what the tumour is and some sort of prognosis. The doctor on Friday didn't tell us at all about the MRI and what it showed, though I know he had the report in mum's file, but I know that between inital diagnosis of the tumour and now she is much much worse. Her left eye is completely non-functional, the huge nosebleeds every couple of weeks have evolved into a continuous drip/dribble of blood, she's almost deaf in her left ear and eating has become more of a challenge. Almost the entirety of the left hand side of her face is numb and tingly now, and the nausea and vomiting is worse. The anaesthetist we saw on Friday suggested mum start taking the anti sick pills at night as a matter of course to hopefully ward off the worst of it.

Off to Coulsdon again soon. We have to be at the hospital for 7:30 am tomorrow, which is quite unholy. I decided I'd rather sleep at mum's and get up early than sleep here and get up in what is essentially the middle of the night and drive there then. I think tomorrow will be quite long enough without starting at 4am. All the same, leaving here for Coulsdon is getting harder each week, though I'm not sure whether it's because I'm eating into my mood/spoons reserves each time I spend a week there, or because the situation is getting harder in itself.

ETA: 12/07/11 No longer filtered
lizziec: (NCIS gibbs abby protection)
Got to Mayday for the hastily arranged ENT appointment about half an hour early and were seen immediately by the doctor. I can't say I was overly impressed with his bedside manner, though it improved some way into the appointment where we reached a mutual understanding. A little more on that further in.

To start with the doctor was very brisk, and wanted to know mum's history with this problem starting from the beginning which upset and frustrated her, so I'm not sure he got a complete picture. Then without any prep time at all went to stick a camera up her nose to see what was going on up there, which completely understandably completely upset mum. She started to cry and said that she hadn't expected that - which was fair as we were just told to be there, no details more than that - and the doctor got kind of frustrated and said that he'd only been handed the case the evening before and had squeezed us into his clinic as a favour to the Neurologist that mum had seen before and was seeing lots more patients in clinic today than he had timeslots for. I guess that explains why we got seen as soon as we got there rather than at a specific time. After we understood he was rushed and he understood mum was scared and uninformed about what the appointment would involve he became much better bedside manner wise. It's a shame it took tears and stuff to get to that point.

He had a go at getting the camera up mum's left nostril, but it didn't go very far as he kept hitting something which I believe was the tumour (he got mum to have a go at blowing her nose, but the blockage didn't move at all), and the attempt looked like it hurt an awful lot (judging by the way mum gripped my hand). It went fine up the right nostril, and appeared to hurt mum much less.

He appeared rather concerned and disappeared for a bit to arrange some things, and then came back to his office to make calls to further arrange things while we were in there. It amused me to hear him sweet talking nurses in much the same way I sweet talk people when I need something.

Anyway, he'd thought that the tumour needed biopsying asap and managed to squeeze mum into his Monday morning list for a biopsy under a general anaesthetic. The rest of the time at the hospital involved heading to the day surgery ward to get pre-admitted and see an anaesthetist (though not the one who'll be doing mum tomorrow) to be checked anaesthetic wise. Was informed that the major risk is that it doesn't stop bleeding after the biopsy is taken and if that happens her nose (through which the biopsy is being taken) will be packed and she'll be sent from Mayday (in Croydon, where all the appointments so far have been, and where the biopsy will be done tomorrow) to St Georges (in Tooting) to be admitted. Really hope that won't happen, but am pondering putting a bag of jammies and washing supplies in the car tomorrow morning just in case, in the hope being prepared will ward off problems.

The follow up to the biopsy will be at St Georges, where the doctor is actually based. He told us how to get there by public transport as he explained that the parking situation (and traffic on the way) is pretty bad, even for him. It was good of him to explain the transport options but I really don't think that mum is up to public transport at the moment. She had a turn while at Mayday on Friday and needed a wheelchair to get her out to the car again. Managed to sort out alternative arrangements that don't involve public transport, thankfully. My auntie and uncle live very very close (a mile or so) to St Georges, and my auntie has worked there (and still volunteers there) so we'll be parking the car at their house and my uncle will drop us off and pick us up, avoiding, hopefully, the parking problems at the hospital without exhausting mum.

All told, it looks like we'll know by Thursday afternoon what the tumour is and some sort of prognosis. The doctor on Friday didn't tell us at all about the MRI and what it showed, though I know he had the report in mum's file, but I know that between inital diagnosis of the tumour and now she is much much worse. Her left eye is completely non-functional, the huge nosebleeds every couple of weeks have evolved into a continuous drip/dribble of blood, she's almost deaf in her left ear and eating has become more of a challenge. Almost the entirety of the left hand side of her face is numb and tingly now, and the nausea and vomiting is worse. The anaesthetist we saw on Friday suggested mum start taking the anti sick pills at night as a matter of course to hopefully ward off the worst of it.

Off to Coulsdon again soon. We have to be at the hospital for 7:30 am tomorrow, which is quite unholy. I decided I'd rather sleep at mum's and get up early than sleep here and get up in what is essentially the middle of the night and drive there then. I think tomorrow will be quite long enough without starting at 4am. All the same, leaving here for Coulsdon is getting harder each week, though I'm not sure whether it's because I'm eating into my mood/spoons reserves each time I spend a week there, or because the situation is getting harder in itself.

ETA: 12/07/11 No longer filtered
lizziec: (animals - duckling-bum)
Not updated this for a few days (a week?), owing to being very busy indeed. Ben arrived on Wednesday night and took me out to dinner (and was generally fabulous the entire time he was here), and we spent most of Thursday and Friday sorting stuff out for mum's birthday, doing various errands and helping mum celebrate her birthday, before getting back to Canterbury late on Friday night for the rest of our weekend. Mum had a passable few days that week, though had a huge headache on Friday night that necessitated calling the doctor for some stronger painkillers than she had been taking (uber co-codamol, as the Tramadol the hospital gave her makes her feel sick). The headache thing worried me a bit as it brought to the forefront of my mind my worries about what a highly aggressive tumour (the drs at the hospital said it was because of the speed it had caused symptoms and degeneration in function in her face, though as of yet, we still don't know what it is) has been doing in the weeks between the first diagnosis of a tumour and now. I keep worrying that the gap between then and now will mean that a treatable tumour will have become terminal in the meantime. Which is silly, because I'm worrying about things that a) I have no control over and b) haven't even come to pass yet.

The MRI is scheduled for today at 12:15 and I'm hoping I can get mum to the hospital and back without her being sick. Attacks of sickness and nausea are becoming more frequent and I think they may be related to the tumour(s). Of all the symptoms mum has, this is the one I struggle with most. I hate vomit. It makes me want to vomit. Yesterday mum was sick several times and it took me 10 mins and nearly losing the contents of my own stomach 5 or 6 times before I got it from the bowl into the loo. It was ok so long as I wasn't looking at it. No nausea or retching as long as I had my eyes shut or it in a different room, but it's hardly a valid strategy for anything other than getting vomit over the floor between the living room and downstairs loo. Once the bowl was cleared of vomit it was fine - no retching or anything while I cleaned it out with water and then dettol'd it. I know there's probably a good deal more vomit in my future and it's one of the things that worries me a lot. Rather pathetic I know. In the great scheme of things it's not really that bad, but I really can't deal with it. I assume that I will get better at dealing with it. I hope I do, for mum's sake anyway.

Mum saw the diabetic nurse yesterday for a routine review and asked some questions I'd asked her to ask and it seems that the diabetic nurse was about as much use as a chocolate teapot. Mum was diagnosed with type 2 just before the symptoms of the tumour became apparent, so the treatment of the type 2 features in the complicated mess of trying to get some calories in to mum. I've probably mentioned before that the tumour on her cheekbone makes it hard for her to eat, especially anything hard, and makes eating extremely slow and hard work. On top of this, which makes her disinclined to eat, is the nausea and vomiting, which makes it extremely difficult to tempt her appetite. She's losing a lot of weight, which I suppose is good from the type 2 diabetes POV but I don't think she's losing it in the right way. She's barely eating, sometimes not keeping down what she does eat and so it's just melting off her. I'm worried that she won't have the energy to deal with whatever treatment she has for the cancer and that she will get malnourished. Sometimes when she's been sick the only thing she feels like eating(or that she can eat) is something that is bad from a diabetes POV like carrot cake, which then gives her the energy to eat something better for her. The only fruit she can manage is raspberries, grapes and blueberries. It's not really ideal.

The diabetic nurse said that if that was all she could manage (the carrot cake type thing) then she should eat that, but it was better if she could manage something like soup and bread. Which is what we were doing, but I feel as much in the dark as to how to deal with mum's nutrition problems as I did before, and I'm angry and upset about that. I got more help from my Auntie Pat (type 2 for years and years) who said that mum was eating so little the sugars issue didn't really feature too high and I should just get calories in to her where and when I could. Really I shouldn't be getting more helpful and less wishy washy advice from my aunt, who is not a medical professional than from a nurse with a speciality in that area.

Gah, it's all so complicated :(

ETA: 12/07/11 No longer filtered
lizziec: (animals - duckling-bum)
Not updated this for a few days (a week?), owing to being very busy indeed. Ben arrived on Wednesday night and took me out to dinner (and was generally fabulous the entire time he was here), and we spent most of Thursday and Friday sorting stuff out for mum's birthday, doing various errands and helping mum celebrate her birthday, before getting back to Canterbury late on Friday night for the rest of our weekend. Mum had a passable few days that week, though had a huge headache on Friday night that necessitated calling the doctor for some stronger painkillers than she had been taking (uber co-codamol, as the Tramadol the hospital gave her makes her feel sick). The headache thing worried me a bit as it brought to the forefront of my mind my worries about what a highly aggressive tumour (the drs at the hospital said it was because of the speed it had caused symptoms and degeneration in function in her face, though as of yet, we still don't know what it is) has been doing in the weeks between the first diagnosis of a tumour and now. I keep worrying that the gap between then and now will mean that a treatable tumour will have become terminal in the meantime. Which is silly, because I'm worrying about things that a) I have no control over and b) haven't even come to pass yet.

The MRI is scheduled for today at 12:15 and I'm hoping I can get mum to the hospital and back without her being sick. Attacks of sickness and nausea are becoming more frequent and I think they may be related to the tumour(s). Of all the symptoms mum has, this is the one I struggle with most. I hate vomit. It makes me want to vomit. Yesterday mum was sick several times and it took me 10 mins and nearly losing the contents of my own stomach 5 or 6 times before I got it from the bowl into the loo. It was ok so long as I wasn't looking at it. No nausea or retching as long as I had my eyes shut or it in a different room, but it's hardly a valid strategy for anything other than getting vomit over the floor between the living room and downstairs loo. Once the bowl was cleared of vomit it was fine - no retching or anything while I cleaned it out with water and then dettol'd it. I know there's probably a good deal more vomit in my future and it's one of the things that worries me a lot. Rather pathetic I know. In the great scheme of things it's not really that bad, but I really can't deal with it. I assume that I will get better at dealing with it. I hope I do, for mum's sake anyway.

Mum saw the diabetic nurse yesterday for a routine review and asked some questions I'd asked her to ask and it seems that the diabetic nurse was about as much use as a chocolate teapot. Mum was diagnosed with type 2 just before the symptoms of the tumour became apparent, so the treatment of the type 2 features in the complicated mess of trying to get some calories in to mum. I've probably mentioned before that the tumour on her cheekbone makes it hard for her to eat, especially anything hard, and makes eating extremely slow and hard work. On top of this, which makes her disinclined to eat, is the nausea and vomiting, which makes it extremely difficult to tempt her appetite. She's losing a lot of weight, which I suppose is good from the type 2 diabetes POV but I don't think she's losing it in the right way. She's barely eating, sometimes not keeping down what she does eat and so it's just melting off her. I'm worried that she won't have the energy to deal with whatever treatment she has for the cancer and that she will get malnourished. Sometimes when she's been sick the only thing she feels like eating(or that she can eat) is something that is bad from a diabetes POV like carrot cake, which then gives her the energy to eat something better for her. The only fruit she can manage is raspberries, grapes and blueberries. It's not really ideal.

The diabetic nurse said that if that was all she could manage (the carrot cake type thing) then she should eat that, but it was better if she could manage something like soup and bread. Which is what we were doing, but I feel as much in the dark as to how to deal with mum's nutrition problems as I did before, and I'm angry and upset about that. I got more help from my Auntie Pat (type 2 for years and years) who said that mum was eating so little the sugars issue didn't really feature too high and I should just get calories in to her where and when I could. Really I shouldn't be getting more helpful and less wishy washy advice from my aunt, who is not a medical professional than from a nurse with a speciality in that area.

Gah, it's all so complicated :(

ETA: 12/07/11 No longer filtered
lizziec: (acid)
Today the NHS turns 60, and I want to wish it a very happy birthday and wish it well for the next 60. I know there are plenty of problems with it, I am not blinkered enough to say that there could not be improvements, but I believe that it is one of the greatest achievements of this country, especially in the post-World War II period. Here's why.

In 1900 (that's only 108 years ago) in this country:
* Life expectancy was below 50 years
* 163 out of every 1000 babies born died before they reached the age of 1 (that's 16.3%)
* The majority of families could not afford to see a doctor

The government refused to interfere as the emphasis at this point in time was on a "laissez-faire" country, meaning that things should be left to take their own course. It was believed that interference by the Government would strangle the economy, so generally people were left to sink or swim as they could. During the latter years of the 19th Century, and the early years of the 20th Century many reports began to come out which drew attention to the plight of the poor, which was reinforced by something of a recruitment crisis for the army during the Boer War. Of those who volunteered 35% (over a third) were rejected as medically unfit, generally because of problems related to poverty.

This changed in 1906 when the Liberal Party was elected, with David Lloyd George as their Chancellor of the Exchequor, and what followed was a package of reforms that ultimately led to a constitutional crisis. The reforms included the setting up of Old Age Pensions, free school meals (which went quite some way to tackling malnutrition among the poor), slum clearance programmes and Labour Exchanges (see here for more information).

The most pertinent reform to what I'm discussing today was the 1911 National Health Insurance act, which brought in various safeguards for those in employment who could afford to contribute to a scheme, which would then pay for them to go see a doctor if ill, and pay a small sum every week if the contributor were unemployed or unable to work. The government paid a sum to the scheme, as did the employer. The limitations of this scheme were numerous. It only covered those able to work, which at this period were mostly men, and even then the only hospitalisation it payed for was sanitorium treatment for TB. It did not cover those earning too little to be able to afford to contribute, children, the elderly, women, and those who were chronically and mentally ill. As a result, many still relied on the quack remedies that they had done before the scheme came in to force. The sad truth was that despite the advances in Medicine that had taken place, most people could not access it. The major problems with NHI showed themselves in the 1930s during the Great Depression when so many were out of work, and so many accounts in arrears (upwards of 4 million) that the companies running the schemes made no profit, which was compounded when the government reduced its contribution.

The turning point came with the Second World War. The Government were in possession of some rather terrifying figures about expected casualty rates as a result of any enemy bombing action, which thankfully never came to pass, though the Government did not know this at the start of the war. Expected Casualties (because I found this during my dissertation research and I think it's really interesting) ) As a result the Government planned various strategies to deal with the expected casualties (including a stockpile of cardboard coffins). The one relevant to this "History of the NHS", is the Emergency Hospital Scheme, which was funded and run by the Government and was "designed to serve the purpose of a moment" - to look after those injured in the war, especially bombing victims. Under this scheme any treatment needed, including hospitalisation, was free. It was during this period, in 1942, the the Beveridge Report was published which proposed a "free national health service" as a way of combating the five 'Giant Evils' of Want, Disease, Ignorance, Squalor and Idleness. The Conservatives, who nominally had the majority in the Commons at this time (though there was actually a "Government of National Unity" in power) refused to commit to putting in place the reforms, which was one of the reasons why they were beaten so comprehensively by the Labour party in the 1945 General Election. One of their first acts when they got in to power was the 1946 National Health Service Act, which provided in law for a free and comprehensive health care system.

The first day of this National Health Service was to be 5th July 1948 but there was an enormous amount of work that had to take place before it could start, including the nationalisation of Hospitals, the creation of health centres, the better/fairer distribution of doctors around the country and the creation of a new salary structure. On top of all this work, there was a huge amount of opposition (as with any large and sudden change). Most Local Authorities and Charitable Organisations who had previously run hospitals were opposed, as were doctors, who did not want to be employed by the government, or told where to work. In fact, at the beginning of 1948 90% of doctors said that they would not co-operate with the NHS. There was also opposition from many who were scared by the huge costs involved, but Aneurin Bevan who was Minister for Health at this time argued that Britain could afford it, and had to afford it. Bevan worked extremely hard to ensure the creation of the NHS, and by hook or by crook (he allowed doctors to work for the NHS and keep private patients while getting the public to sign up with doctors for the NHS - if a doctor didn't sign the form, he risked losing the patient [and the funding that came with them] to a doctor who would), made sure that over 90% of doctors had signed up by the opening day.

The benefits of the NHS were visible very quickly, especially in those groups which had not been covered until its creation. Maternal and infant mortality levels fell very quickly and life expectancy rose, especially as the new techniques and drugs (such as Penicillin) became available at no cost to people who would have died for want of them.

In 2008 we're looking at:
* An average life expectancy of 77 years, with more and more living until 100.
* An average of 5.2 out of every 1000 babies dying before the age of 1 (0.52%) [figures from 2006]
* Everyone can see a doctor, irrespective of whether they can pay

What I'm trying to say in an incredibly long winded way is that the NHS may not be perfect, but in comparison to what we have had before it is amazing, and I sometimes think we lose sight of just how brilliant it is amongst all the complaining about the things that are wrong and the compromises that sometimes have to be made.

My dad was chronically ill with Type 1 Diabetes most of his life, and we did not have to pay towards his care. His final illness and the two weeks spent in intensive care did not bankrupt us. My sister was born 15 weeks prematurely and spent her 16 hours of life receiving the best care available in 1982, and my parents were not left with a crippling bill as well as a dead daughter. When my mum hurt her back and she was in bed for 6 weeks her care (a physio, home help twice a day, doctors visits, nurse visits) did not cost us. When my mum was pregnant with me and was kept in hospital for most of those 9 months my parents did not have to check her out because they were worried about the cost, nor did they have to worry about the bill they were getting at the end. When I was ill with depression I did not have to worry about the cost of my prescriptions or my counselling. The times Phil has injured himself we have not had to worry about the bill from the Hospital for getting him checked out. Ben and I have not had to worry that while I've been off work I've been without coverage for my health (or traded electricity/food/rent for insurance coverage).

I think there's a lot to be said for that. So Happy Birthday NHS, here's to many many more.

ETA: Pretty much 1500 words. I wrote as much as that in some of my degree essays. Sorry guys!

ETA2 (2011): Since I wrote this my mum died from a rare form of Cancer. Her care was second to none and nothing was denied her on grounds of cost. We were not left with crippling bills, and not having to worry about finding money for her care made her last weeks and days easier for everyone.

lizziec: (acid)
Today the NHS turns 60, and I want to wish it a very happy birthday and wish it well for the next 60. I know there are plenty of problems with it, I am not blinkered enough to say that there could not be improvements, but I believe that it is one of the greatest achievements of this country, especially in the post-World War II period. Here's why.

In 1900 (that's only 108 years ago) in this country:
* Life expectancy was below 50 years
* 163 out of every 1000 babies born died before they reached the age of 1 (that's 16.3%)
* The majority of families could not afford to see a doctor

The government refused to interfere as the emphasis at this point in time was on a "laissez-faire" country, meaning that things should be left to take their own course. It was believed that interference by the Government would strangle the economy, so generally people were left to sink or swim as they could. During the latter years of the 19th Century, and the early years of the 20th Century many reports began to come out which drew attention to the plight of the poor, which was reinforced by something of a recruitment crisis for the army during the Boer War. Of those who volunteered 35% (over a third) were rejected as medically unfit, generally because of problems related to poverty.

This changed in 1906 when the Liberal Party was elected, with David Lloyd George as their Chancellor of the Exchequor, and what followed was a package of reforms that ultimately led to a constitutional crisis. The reforms included the setting up of Old Age Pensions, free school meals (which went quite some way to tackling malnutrition among the poor), slum clearance programmes and Labour Exchanges (see here for more information).

The most pertinent reform to what I'm discussing today was the 1911 National Health Insurance act, which brought in various safeguards for those in employment who could afford to contribute to a scheme, which would then pay for them to go see a doctor if ill, and pay a small sum every week if the contributor were unemployed or unable to work. The government paid a sum to the scheme, as did the employer. The limitations of this scheme were numerous. It only covered those able to work, which at this period were mostly men, and even then the only hospitalisation it payed for was sanitorium treatment for TB. It did not cover those earning too little to be able to afford to contribute, children, the elderly, women, and those who were chronically and mentally ill. As a result, many still relied on the quack remedies that they had done before the scheme came in to force. The sad truth was that despite the advances in Medicine that had taken place, most people could not access it. The major problems with NHI showed themselves in the 1930s during the Great Depression when so many were out of work, and so many accounts in arrears (upwards of 4 million) that the companies running the schemes made no profit, which was compounded when the government reduced its contribution.

The turning point came with the Second World War. The Government were in possession of some rather terrifying figures about expected casualty rates as a result of any enemy bombing action, which thankfully never came to pass, though the Government did not know this at the start of the war. Expected Casualties (because I found this during my dissertation research and I think it's really interesting) ) As a result the Government planned various strategies to deal with the expected casualties (including a stockpile of cardboard coffins). The one relevant to this "History of the NHS", is the Emergency Hospital Scheme, which was funded and run by the Government and was "designed to serve the purpose of a moment" - to look after those injured in the war, especially bombing victims. Under this scheme any treatment needed, including hospitalisation, was free. It was during this period, in 1942, the the Beveridge Report was published which proposed a "free national health service" as a way of combating the five 'Giant Evils' of Want, Disease, Ignorance, Squalor and Idleness. The Conservatives, who nominally had the majority in the Commons at this time (though there was actually a "Government of National Unity" in power) refused to commit to putting in place the reforms, which was one of the reasons why they were beaten so comprehensively by the Labour party in the 1945 General Election. One of their first acts when they got in to power was the 1946 National Health Service Act, which provided in law for a free and comprehensive health care system.

The first day of this National Health Service was to be 5th July 1948 but there was an enormous amount of work that had to take place before it could start, including the nationalisation of Hospitals, the creation of health centres, the better/fairer distribution of doctors around the country and the creation of a new salary structure. On top of all this work, there was a huge amount of opposition (as with any large and sudden change). Most Local Authorities and Charitable Organisations who had previously run hospitals were opposed, as were doctors, who did not want to be employed by the government, or told where to work. In fact, at the beginning of 1948 90% of doctors said that they would not co-operate with the NHS. There was also opposition from many who were scared by the huge costs involved, but Aneurin Bevan who was Minister for Health at this time argued that Britain could afford it, and had to afford it. Bevan worked extremely hard to ensure the creation of the NHS, and by hook or by crook (he allowed doctors to work for the NHS and keep private patients while getting the public to sign up with doctors for the NHS - if a doctor didn't sign the form, he risked losing the patient [and the funding that came with them] to a doctor who would), made sure that over 90% of doctors had signed up by the opening day.

The benefits of the NHS were visible very quickly, especially in those groups which had not been covered until its creation. Maternal and infant mortality levels fell very quickly and life expectancy rose, especially as the new techniques and drugs (such as Penicillin) became available at no cost to people who would have died for want of them.

In 2008 we're looking at:
* An average life expectancy of 77 years, with more and more living until 100.
* An average of 5.2 out of every 1000 babies dying before the age of 1 (0.52%) [figures from 2006]
* Everyone can see a doctor, irrespective of whether they can pay

What I'm trying to say in an incredibly long winded way is that the NHS may not be perfect, but in comparison to what we have had before it is amazing, and I sometimes think we lose sight of just how brilliant it is amongst all the complaining about the things that are wrong and the compromises that sometimes have to be made.

My dad was chronically ill with Type 1 Diabetes most of his life, and we did not have to pay towards his care. His final illness and the two weeks spent in intensive care did not bankrupt us. My sister was born 15 weeks prematurely and spent her 16 hours of life receiving the best care available in 1982, and my parents were not left with a crippling bill as well as a dead daughter. When my mum hurt her back and she was in bed for 6 weeks her care (a physio, home help twice a day, doctors visits, nurse visits) did not cost us. When my mum was pregnant with me and was kept in hospital for most of those 9 months my parents did not have to check her out because they were worried about the cost, nor did they have to worry about the bill they were getting at the end. When I was ill with depression I did not have to worry about the cost of my prescriptions or my counselling. The times Phil has injured himself we have not had to worry about the bill from the Hospital for getting him checked out. Ben and I have not had to worry that while I've been off work I've been without coverage for my health (or traded electricity/food/rent for insurance coverage).

I think there's a lot to be said for that. So Happy Birthday NHS, here's to many many more.

ETA: Pretty much 1500 words. I wrote as much as that in some of my degree essays. Sorry guys!

ETA2 (2011): Since I wrote this my mum died from a rare form of Cancer. Her care was second to none and nothing was denied her on grounds of cost. We were not left with crippling bills, and not having to worry about finding money for her care made her last weeks and days easier for everyone.

March 2012

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