Friday 2 November 2007

Intervention

I've had this one on ice for a while, because I couldn't decide if it made me sad or angry.

One Saturday in the summer, I was out shopping and called in to a cafe (it has 'restaurant' in it's title, but it really isn't) for a sneaky sausage and egg concoction.

As I find my table I notice a guy in the corner. He has the 'unwell' look of someone who maybe drinks too much, and doesn't have a permanent residence. His clothes are unkempt and he is unshaven, hair unwashed for a while, but with that suggestion that he's not all that dirty, so not a street drinker or rough sleeper.

He has his head down but his eyes are darting up frequently, scanning everything going on around him. His shoulders are rolled forward and he is repeatedly rearranging the items in front of him. My 'menatalhealth-ometer' pings.

I sit down, eat, drink, read the paper. As I'm finishing, two girls sit down behind me. Giggly teenagers in their best gear, lovely and hopeful for the day.

Second pass. There is a blur in my peripheral vision, a scream and chairs crashing. As I turn, I see two girls, mouths open after the initial scream, hot coffee covering them and their table, they are beginning to shake visibly with the onset of shock.

The man is a few strides away - but he's coming back, shouting.

"Don't look at me. That's what you get for looking at me..." becoming incoherent with rage. I put myself between him and the girls, arms outstretched, facing the girls telling them he won't come near them. Behind me, a man has got up and is restraining the shouter gently, calming him, talking soothingly.

Restraining guy begins to move the man away from the girls, who are now backed up to the window, crying and crouched. I speak to them, try to get them away from the window - a crowd of onlookers is gathering in the street outside, enjoying the morning show.

The manager makes his way over. As I get the girls sat down, the man is ejected.

The police and paramedics are called. They take over - they are good at their job, and after leaving my details, I go outside and take some deep breaths, have a fag, calm down.

I remember it all clearly, which is good, because two months later, the police call me to ask me to give a statement.

And what I remember, above all, is this.

The three big young guys at the table across from me haven't moved. Neither have any of the staff who are only feet away. The group of twentysomethings two tables away haven't moved.

The two people who have are me, five foot nothing and eight stone, and a guy of sixty two.

Tuesday 30 October 2007

Hospital Pharmacy (1)

The hospital pharmacy is interesting. For the past two years, one of the chairs in the waiting area has had a notice tied to it with a bit of string. The notice says 'Do not sit on this chair'. None of us do. I only think about this later, and resolve, on my next visit, to push the bounds of Englishness and disobey the notice. Now there's something to look forward to...

You arrive at the counter, avoiding the gaze of the waiting people, some of whom have been waiting for so long that they have begun to turn the same colour as the jaundiced walls owing to the lack of natural light. Most of the others are folk that you wouldn't want to sit next to if they were beside the only vacant seat on the last rocket off the terminally burning Earth. And there is always an angry middle class woman, usually in a royal blue suit who is on her mobile loudly complaining that she is STILL waiting after 4 minutes*.

Seasoned NHS patients like me are easy to spot, as we always have a book with us, sometimes a flask and sandwiches. Most of us are used to waiting, and don't mind, because we know that we are about to get hundreds of pounds worth of medication for either a fraction of the true price, or, if you're an official cripple like me, nothing at all.

Not blue suit woman, who is now building up a real head of steam about 'going private' 'never again' 'bloody farce' 'late for meeting' and finishing off with 'well, I don't mind telling you Colin, it's like the third bloody world. We're going private. We'll sell one of the children's ponies'.

By the shouting, agitiated pacing and arm waving, I make a laymans diagnosis that there probably isn't much wrong with her. She is what Dr Crippen calls 'the worried well' (15th October Post)

NHS Blog Doctor: The Crippen Diaries 2007 (Week 42)

But when her demanding nature, internal stress, arguments with Colin and two bottles of chardonnay a night habit cause her chest pains at 2am, I hope she rings her private hospital. They will tell her to ring the (NHS) emergency ambulance. The (NHS) paramedics will then convey her to an (NHS) hospital in an (NHS) ambulance where (NHS) staff will tend to her and give her the medication she needs, all without a flourish of the gold card in her wallet. Her private hospital will tell her to ring the NHS, because they don't have a defibrillator or a resident heart specialist or experience in dealing with emergencies. Nope, they chopper all serious cases to the (NHS) hospital up the road.

I know I do moan about the NHS, but I genuinely believe that this large, unwieldy public organisation does a damn good job, despite the constraints put in place by clueless, faceless 'managers'.


*As far as the '4 minutes', it's worth remembering that this is the only pharmamcy in a hospital that seves a city of just under 1 million people. It dispenses all the prescripitions required by over thirty in-patient wards and also serves over a thousand out-patients per day. There are eight staff - not all on shift at the same time.

High Noon

Good news. After an emergency appointment with my lovely specialist yesterday, I have new drugs.
I explained the whole work thing, how I am constantly tired and so on. I got a little bit emotional but managed to wheel out the stiff upper lip.

Me: I never wanted to go round the world on a skateboard before I had Crohn's, and I still don't, but I do expect to be able to go to work and not have to go to bed at 8pm.
Him: Not unreasonable
M:To give you an idea of how crap things are, I did two loads of washing yesterday and washed up - then had to have a lie down
H: So you would describe your life as?
M: In all honesty, crap. If this is to be my life, I'm not sure I want it.

Dr looks through huge file on me, being careful to keep a firm hold on it lest it slip off the desk and render the 2ft tall nurse unconscious.

H: Hmmm. Yup, your recent bloods suggest that you are indeed feeling like crap, physically. And I'm not surprised you are at the end of your tether with work.

I know he believes me, as under todays date in the file he writes ' X is feeling crap, employers being ridiculous.'

Here somes the sticking point. We both know that a steriod called Prednisolone will fix me up straight off. But we also both know that I will have to be off work to take the initial big doses and that eventually, steroids will make my arms and legs fall off.

There is an audible bing - followed by more leafing through the file - and a lightbulb goes on...

H: I've never given you Budesonide, have I?
M: No, but I have read about it
H: So you'll know it's a steroid, but with far fewer side effects than Pred?
M: Yes
H: How have I never given you this before? Humph

Dr tuts at hinself for a bit.

A shaft of sunlight enters the room accompanied by a choir of angels.

H: Right, lets do that then. You should feel better in about a week.

And just before I fall to my knees to give thanks that there is hope,and that there will be no hospital admission, he also says:

H: And if your enployers give you any more problems, refer them to me. You've been through a hell of a time in the last few years. I'll either speak to them or write to them, the idiots. Pfft.

And off I trot the hospital pharmacy to pick up my new drugs.

Friday 26 October 2007

Sucker punch

After yesterdays little moan, I thought I'd re-read the maternity policy when I got into work. Beware, here comes a really big moan.

Ususal policy for all and sundry is that time taken for medical appointments must be made up or taken as holiday. I take holiday, because I've got no chance of making up the 60-70 hours a year I spend on appointments. So I use around nine days a year on appointments.

However, if I was optionally in need of appointments, i.e. ante/post natal, guess what? I would not be required to make up any time at all or to use holiday, and it would be fine for me to have these during standard working hours. I'd also get a £200 bung from the government for pro-creating successfully. Along with free dental and optical care for a year.

Trying to finish early to get to an appointment that HAS to fall in work time as hospitals are a 9-5 thing? Better have worked over or make the time up. Finishing at lunchtime to go to a room where somebody will teach you how to breathe correctly (somthing you really should have cracked by now to reach the age you are) - off you go.

And then we get the colleague who is on her third preganancy in four years.

That's 52 weeks at five days per week x 4 = 208 weeks
Say, nine months per prenancy on maternity leave = 36 weeks x 3 = 96 weeks
Lets posit an average of 10 days per pregnancy for appointments, morning sickeness, being knackered because you're carrying another human being around 24hrs a day = 6 weeks
Plus the minimum holiday leave each year of 22 days x 4 = 17 weeks (ish)

96+ 6 + 17 = 119 weeks over four years.
Thats 89 weeks AT work, and 119 weeks NOT at work over four years.

Believe me, my absence levels couldn't touch that. And remember, all the above is based on someone who doesn't take her full maternity leave allowance of 51 weeks per pregnancy, and doesn't take much time off compared to others I have worked with. At any given time we have at least 200 emplyees off on maternity leave.

And it's based on CHOICE. Which I don't have about my condition.

Now, I don't want you to think I believe my employer should just let me do as I please, I am aware that they are trying to run a business. I do agree that things like dental appointments and so on should be made out of working hours if possible or that time should be made up where necessary. I'm not a total idiot. However, my employer was aware of my condition and the cycle of hospital attendence when they employed me. Seven years ago. When I had six months off five years ago pre-and post op, I did volunteer for redundancy through ill health, but they declined.

So muttering threats at me now seems foolish at the very least.

It would be like buying a car with no brake pads and complaining that you keep hitting the garage door when trying to park up.

Thursday 25 October 2007

Working nine to five

Bugger.

I had a meeting at work to inform me I may be put onto the disciplinary process as a result of my absence.
I have been off quite a lot this year, I admit. I have always followed the appropriate procedure and obtained medical certification where required.

Here's the thing. My employer knew about my condition when they employed me. I was off for six months following surgery several years ago, and volunteered for redundancy through ill health. They declined.
I have seen company doctors and specialists, granted access to medical records, and complied with every request made of me. I have been sedated, intubated, injected and invaded.

What have I not done?

I have not made a choice to absent myself from my job voluntarily for 51 weeks, expected to be paid for at least half this time, and then demanded the right for flexible working on my return. Unlike any female employee who should choose to have a child.

Sunday 30 September 2007

Goodbye Kate?

I have been thinking about this one quite a lot lately.

There's an entry a while back about my friend Kate. At the time of this entry, it's been six months since I called her. She hasn't contacted me at all. I have had reason to speak to her husband to put some work his way, but from what he didn't say, it seems my absence has been totally unnoticed.

How to feel about this?

Disappointed, as it appears I am disposable. 18 months ago I was witness at their wedding, and now I am nobody.

Angry, because I worked very hard to include her in my life and to help her work thorugh a very tough situation.

And maybe even a little bit vindicated. I suspected that, as she only ever called me when she wanted something/needed to bitch about husband & family/was being ground down by work, I was being used. Looks like I was right.

So here's the thing. Their baby is due in five weeks. I will no doubt be notified of the arrival, probably by a mutual friend or text message. Do I send a card and gift, or do I just maintain radio silence?

Saturday 29 September 2007

Drug Abuse?

It's Saturday night and I'm staying in. It's cold and dark, I have an appointment with the specialist on Monday morning and I thought it might be nice to give him a set of blood samples that are less than 14% ABV.

And I'm in a tiny bit of pain. And I'm bored. But does this justify having a Tramadol?

For those who are not aware, Tramadol is an opiate based painkiller, that, as I understand it, works by increasing the flow of endorphins to either block the pain, or to make you not notice it. And by being an opiate, obviously.

Now, I'm a lucky odditity, as was discovered after my surgery a few years ago. I had the standard morphine push button drip wired up, but was still so stoned post-op that I had misheard almost everything the staff had told me, so thought I could get a hit about every 25 minutes, and jolly nice it was.

Sometimes I didn't need a hit for pain reasons, but took one from time to time as the ward was pretty chaotic and grim, so I guess you could say I used it for mental health reasons.
The days passed and the pain managment team turned up to assess me. And were very impressed by how little morphine I'd used.

Turns out I could have had some every five minutes. Bugger.

This and my reactions to other sedatives led to the conclusion that I have overdeveloped opiate receptors, which means any moderate dose of opiate painkiller works exceptionally well, and I also get all the good side effects - improved mood, a deep fascination with small things and generally have a very nice time.

Consequently, a single Tramadol would do nothing for most people, or at best might give them 3-4 hours pain relief, but leave me happy as a sandboy for about 8 hours.

But opiates can be habit forming (i.e. heroin), so must not be treated lightly. In theory I could take some paracetomol and hope for the best, but if I take some tramadol, I know it will work and also give me a good night being delighted with the thread count on my Egyptian cotton bedsheets....*

So I guess I'm wondering, where is the line between prescription drug use and prescription drug abuse?




*I spent a happy evening in bed after some tramadol pondering the egyptian cotton, thinking about the Nile tide irrigation system, the family that had grown it and how it had got from the cotton field to my bed and being generally grateful for the whole process.

Saturday 22 September 2007

Can I make an appointment to make an appointment?

It's been a few months I know, but I'm back at work and it's all been a bit special. Helped by the following turn of events....

I receive an appointment for my specialist on 19th October, bang in the middle of the day, so I duly book the day off work.

I then receive another letter saying that due to unforseen circumstances, the appointment is changed to 25th October. I suck my teeth a bit, but shove the letter on the pin board with the rest of the stuff I can't find a home for.

I get a third letter advising me that the appointment has been changed to December. This is meant to be a six monthly check, and December stretches it to nine months. I do not suck my teeth this time, this time I say a bad word quite loudly. And ring the hospital.

Kelly seems like a nice girl, but over the phone, I can her her tongue curling over the corner of her mouth as she attempts to enter my details into the computer with evenly spaced clunks. I am kind and patient, and explain that changing an appointment three times really isn't acceptable to me, and that my nice employers are struggling to keep up with the holiday chart.

She is polite, and explains there isn't anything she can do. I ask to speak to her supervisor, she says she will put me through. And the phone rings and rings......

I call back and ask for the supervisors' direct dial number, which I get, because I am kind and patient. I ring the supervisor. Natalie the supervisor is not kind or patient, and I begin to feel sorry for Kelly. Natalie says that appointments are cancelled because consultants 'just go off on holiday whenever they feel like it'. Although she doesn't say it, I think the next part of the sentence was probably 'and leave me to clear up the mess'. I explain that I must have an appointment in October. There is some thudding of keys and she says all clinics are cancelled at that time. I offer to call the Patient Liaison (wonderful people who get things done, and report to the Board). There is a pause, and then suddenly an appointment pops up on screen.

It is my original appointment on 19th October.

So why was it cancelled in the first place? The clinic is running, the consultant is not on holiday, and the NHS have wasted quite some money writing to me three times.

Thursday 14 June 2007

And...

Further to the below, work called at 1.30pm to say that, owing to transport problems, they couldn't come and would need to reschedule AGAIN.

So, next time I fancy a random day off, can I give them a call and say that I can't make it to work today because of transport problems?

Bah and double humbug.

Pick a number, any number...

The home visit from work (absence of over a month triggers a visit from HR) has been changed again. They haven't changed the day, but have changed the time.

My workplace are good. They haven't sacked me and pay me for several months when I'm ill, which I appreciate and am grateful for. But I've planned stuff today around the original time, and it would be nice if they could just stick to the plan.Inability to keep to arrangements is something that irks me. I find it inconsiderate at best and damn rude at worst.

Also, being geared up for a home visit puts me under a little pressure, and stress is not good for Crohn's. And it's just such a blah. There will be some small talk, then they will ask if there is anything at work they can do to help, or if anything has happened to make me ill. And, as in numerous return to work interviews, occupation health consultations and 'counselling' interviews, I will say no.

And I will explain that Crohn's disease is an auto immune condition that is chronic, and will continue to flare up on and off for the rest of my life. I'm one of the unlucky ones who has never managed to get into full remission. I've explained all this to the same people on *thinks for a moment* more than a dozen occasions. I've handed over literature, notes from specialists and web links.

I've gone to private consultations with a doctor of their choice in a town 20 miles away. Interestingly, he was quite bemused to see me in a nice but 'what do they expect me to do/say about it?' way. I've given them access to my medical notes, GP and specialist.

As I said, I'm grateful that I still have a job. However, I did make my condition known at interview stage, and it was their risk to employ me.

It's just that if I have to go through my medical history one more time, very slowly, so that it can be written down on another form, spelling out the names of my medication and explaining what it is and what it does, I might just loose the plot.

Should I just type it all up and have twenty copies run off and laminated for future use?

Friday 8 June 2007

The procedures went well, nothing unexpected turned up, and I go back to the specialist in two weeks for biopsy results. The sedation was unparralled. I will blog more about this another time. In the meantime "Keep on taking the tablets".

I'm entering the state of suspended animation that comes with a long term absence from work and social life. I've been here before, and I'm doing my best, but I'm having extreme mood swings, sometimes affected by outside influences. The swings vary from happiness to utter despair.

The despair end of the spectrum is facilitated by the utter selfishness of two of my 'friends'.

One, we'll call her Kate, has always been fairly useless at being proactive in friendship. You know, the sort of person you speak to regularly as long as you ring them. She married one of my friends, moving from a different area, so we became friends by default I guess, but over the years, I thought we'd become quite close. In the last six months, I have become increasingly resentful of making all the running and have significantly cut down on the amount of times I call her. Result? I've heard nothing from her for weeks, since I last called. I know, with friends like this.....but I also know that when a crisis hits her, my phone will start ringing.

So how do I deal with this? In one respect, I'd like to let her know how much her disregard of me hurts, and say that this is why she has lost touch with friends from university (they got fed up of always being the ones to contact/make arrangements) and that this is why she has no other friends (she's been introduced to lots of people, who later on, have said to me in passing 'Kate never rings me/rings me back. Can't be bothered with that. Shame really, I quite liked her'). In another, I know I should just leave it and be unavailable when the inevitable occurs.
Which will be hard, as I've know her husband for 15 years, and If I ditch her, I ditch him.

The second is more hurtful, because the behaviour is out of character. I can only assume I have done something to offend (brain racked, nothing found) or that he just can't be bothered.

I know all the above will be magnified by the fact that I'm a bit ill at the moment and that I'm stuck at home a lot. I'm trying hard not to sink into a depression, but some days it's just really difficult. But I have other excellent friends who are good at giving me a swift kick in the pants when required. I think it's time to book a foot/butt contact and get myself together.

I had a doctors appointment on Wednesday. The usual receptionist was back in place.

Me: Hi, I have an appointment with Dr Raj at 4.10?
Her:(smiles)Hello, is it name?
Me: It is.
Her: Would you like to go straight in?
Me: Thank you.

And it's that easy.

Also on the postitive side, the conversion of the derelict building next door is going well, judging by the amount of noise created. I'd especially like to commend the chap who was cutting new stone with an angle grinder/stillsaw at 5.30am yesterday morining.

Thursday 31 May 2007

Where the sun don't shine

I have known my Crohn's specialist for longer than my husband. We have a good relationship, I understand my condition, and he respects my opinions and decisions. I appreciate the constraints he works under. We have ridden the test/prescription/funding/admission merry go round many times.
I had an appointment yesterday morning to sort out some drugs and discuss the strategy for the tests I'm having tomorrow. Becuase he knows I will answer questions with more than a grunt, he occasionally throws me a medical student to play with a junior doctor on rotation. This mornings was a very professional and earnest young chap with an African accent. We discuss various things. After a few minutes, my consultant enters. I tell him that the letter about my procedure took several weeks to arrive, so in the interim, I rang the Gastro unit myself and booked a slot.

Him: So, 1.30 on Friday then..I'll ensure the red carpet is out.
Me: If you could. And I'd prefer the string quartet in the corner this time.
Hin: Fine. And the potted palms?
Me: Oh, as before

The junior doctor looks a little confused, but relaxes as we discuss the nitty gritty of canulas and sedation.So this time tomorrow, I will be sleeping off the finest Class A drugs the NHS has to offer, and hopefully be a bit further forward with the latest round of treatment.

Secretly, I'm a bit scared. I'm having an ileoscopy (camera in stoma) colonoscopy (camera up the bum) and endoscopy (camera down the throat into stomach). The first two don't bother me at all. I've had them before, and while I wouldn't recommend them for a fun night out, they are ok. It's the third one. I'm just not keen on something down my throat. At all.

The part of my brain that is rational knows that these tests are necessary and sensible. They will give a clear idea of how my disease is behaving, and any added complications such as ulcers, which will afect the choice of treatment.

The part of my brain that is still four years old knows that I don't want to do this. I want to go to the seaside and eat chips.

The part of my brain that is a gobby socialist knows that if I was rich and living in London, I wouldn't be having anything put inside me. I would be having a scan.

And the part of my brain that gets me through everyday life knows that I will grin and bear it and try not to say 'F***' in front of my good doctor.

Tuesday 29 May 2007

A Polite Conversation

I arrive at the GP's surgery. It is quiet. And I mean quiet - there are two other people there. The receptionist is new. She isn't chewing gum in a slack jawed manner and wearing a tabard, but you get my point.

Me: Hello, I've come to pick up a repeat prescription and a sick note
Her: .................................
I notice her jaw slacken sightly. Does this mean she has heard me? As her eyes don't focus, I have another go.
Me: I've come to collect a repeat prescription and a sign off?
Her: Oh.
Very Long Pause
Her: So have you got one then? They take 48 hours you know.You can't just have one you know.
Me: Yes, I know. I rang up and ordered both on Tuesday. Today is Thursday.
The expression on her face leads me to suspect that the fact that today is Thursday is news to her.
Another V.L.P
Me: Would you like my name then?
Her:Er...............yeah
I give my name.A third V.L.P. She doesn't move. I can see the box with my repeat prescription and sign off. It is, at best guess, 12 cms from her left hand.She won't even need to stand up. I smile and nod encouragingly. Perhaps she thinks I am 'a wierdo'.After all, I am not wearing any gold, I am over thirty and do not have any children with me. I have all my teeth and no tattoos. I haven't sworn at her. I am not grey and shaking and demanding my 'script'.
A further V.L.P. She turns her back on me.
Her: Well, I'll have to look for it. Sighs. You'll have to wait.Sighs.Would you like to take a seat (this was not a request).
Now, this could have gone a number of ways, save for the floor to ceiling bulletproof screen and the fact I'm in quite a good mood.
Me: No, thank you. I would like you to look for my repeat prescription and my sick note and give it to me, now, please.
Her:.....................
The jaw slackens yet further in what I can best decribe as shock. Some doctors' receptionists' think they are on a par to God. I, however,think not.
After further heavy sighing, she drags herself along on her wheeled chair.And gets the repeat prescription and sick note. And hands them to me. Very slowly. The last person I saw moving that slowly was an in-paient on a zimmer frame.
Me. Thank you.
Her ...............sigh.

Some years ago, I had cause to go through a formal complaints procedure with my surgery. The were several problems, but the B12 was the last straw. I need weekly shot of B12. The surgery don't keep it.Methadone yes, vitamins....no.
I was told I'd need to make an appointment to be prescribed it. I would then need to collect the prescription, store it at home and make a second appointment to have it administered. Two appointments that would a) not be available to people who needed them and b) because of the distance I live from work, mean 6 hours off a week.
I was not a happy kipper.Things were eventually resolved, and I'd noticed a massive improvement in the surgery in the last 18 months. They've employed some additional GP's, who are excellent, and the appointments system has been over hauled.The phone lines open earlier, and there are a lot more clinics and longer opening hours. Trying to be fair and even handed, I was going to write to them. After all, I'd complained, so shouldn't I also give credit?

Then it took me 10 minutes to get a piece of paper to travel less than a foot.







Tuesday 22 May 2007

Sleep and Drugs and Bathroom Plugs

13 hours sleep. I feel good. This means I can:

Go collect the prescription and sign off that have been waiting at my GP since Tuesday.

See in single vision

Ring my boss to update her without sounding like an unemployable moron and remember what I said to her.

Shave my legs without having 999 on speed dial in case I lacerate something important.

Except for the last bit. Because I've just been to check on the progress of the bath I'm running.I obviously need another early night, becaue the big bath full of nice hot water I was imagining in my head was just a bath with a bit of damp in the bottom. So I've now put the damn plug in and started again. And I haven't even had any magic fairy dust today. Oh dear.