Medical professionals and communication

WARNING ! HEAVY RANT AND WHINE ZONE. TOTAL EXASPERATION.

YOU DO NOT NEED TO READ THIS BUT I NEEDED TO WRITE IT AND GET IT OUT OF MY SYSTEM !!!!! ;O)

Is it me or are most people in the dental profession incapable of sympathetic, clear and precise communication ?

Those of you who follow this blog will know that my dental saga re. removal of a lower seventh and a wisdom tooth has been going on for over a year. Suffice to say that the extraction process is complicated by the fact that I am not at all keen on having the blighters removed whilst I am conscious but the sedation option now seems to be too difficult because
a) you need to fast beforehand (and the length of time you need to fast varies according to which dentist or oral surgeon I speak to: it is anything between 1 and 8 hours)
and b) the drug of choice is for CS Midazolam which is part of the same family as diazepam to which I have a very nasty reaction.

My dentist referred me to the hospital for the extraction in Feb 2009, having become exasperated by my inability to cope with certain drugs and me having to cancel twice because of my relapse...even after I had told her I had M.E., and explained my 'unreliability' at being able to attend pre-arranged appointments because of the 'nature of The Beast.'

I have now had three pre-op visits to the hospital: each time meeting someone other than the oral surgeon and each time asking about the exact nature of the procedure and the anaesthetics/fasting time they intend to use. I have done so in order to try and secure the best possible outcome for myself as someone with M.E. and with a dental phobia. I have written letters to the surgeon expressing my concerns and asking for a 5 minute conversation over the phone since he has been trying to direct/deflect my questions w through his (very sweet) secretary who reads out his unhelpful response to my letter so that I then I ask another question and she says 'I don't know. I'll get back to you'. It is like playing ping pong with an opponent hiding behind a screen.

In exasperation, two months ago I went back to another dentist ---- a private dentist who was human and treated me as if I had genuine concerns and spoke to me as one intelligent adult to another. I was almost on tears with relief. Here was someone who did not treat me like a freak, a wimp ,a nuisance: yes I could have conscious sedation, yes the fasting time could be as short as 2 hours (do-able for me...just) and it would be fine. I then spoke to their Oral surgeon and all went well until we discussed my bad reaction to midazolam at which point I got referred back to the hospital having been told by the dentist's Oral Surgeon that it was not unreasonable for me to ask for a face to face consultation with the hospital oral surgeon and anaesthetist about alternatives to Midazolam i.e that I wasn't just being a nuisance and unreasonable.

I wrote another letter an yesterday was the big day...I would finally meet the man himself, spend a quality 5 minutes sorting out how they would perform the extraction and the anaesthetic they would use in order to secure a best possible outcome ......and then get on with it. I just want this over and done with.


This is not how the NHS works. I went for the appointment and was about to be directed down the pre-op 'X ray and more blood tests route' again until I said quite emphatically that I'd already done all that and had just come to talk about etc etc.

I wait in a crowded, hot waiting room amongst a group of tired, irritated people who had had a enough of being shoved around (when I did go for the pre-op blood and X-rays last September it took 4 hours !). There were people with tales of being there since 9 a.m. ( this was at nearly 1 p.m.), tales of an elderly woman whose notes had been lost and was distressed and wanted to get back to bed on the ward, tales of people who had an elderly father in day care across the hospital site and a disabled son at home with a respite carer who had to leave by 1.45 and yet his mother had still not been seen by 1.15 p.m....and the hospital knew her situation.

Eventually I am called. At least we can have a proper adult discussion and sort everything out. I want this over as much as anybody. I walk in the room expecting to see the Oral Surgeon ( I know what he looks like). I am met with a very tired, disgruntled woman about 28.

'What was it you wanted then ? Something about anaesthetics ?' ..she asks as if I she is speaking to a piece of sh*t on her shoe.

I explain, again, about my concerns (for it is obvious she has not really read the correspondence and nobody seems to take a few minutes to read your notes before you enter the room)

'Well, you can't have Midazolam because of your reaction to diazepam, they're part of the same family of drugs' (yes I know that ...I told you)

'The only way is to have a local...be a five minute job.'

' Are you sure ?' (Really incurring wrath now.....questioning the expert !) ' Only my dentist extracted the lower 7th of the other side and it took about 20 minutes (of torture....but I didn't say that last bit).

'No it'll be easy....it's all I do all the time. ( no wonder she looks so bloody grim ) We'll just pop them out.'

(I didn't tell her that the oral surgeon at the private dentist said, when I asked him if I might just as well go for a local and tough it out, 'Oh God know...I wouldn't want it out with a local...there'll be stitches and everything and it'll be nasty.)

I was flummoxed. I didn't know what to say. I was tired and exhausted and thinking about the 30 minute drive home.

'That do you then ?' she says.

'Yes, I suppose so...' I find myself answering.

So that's it...out with a local.

Why is it then in such situations I always come to a point, no matter how much I rehearse my attitude and responses, where I feel like I'm at school and must do as I'm told: that I'm standing the in my nice grammar school uniform waiting to have whatever someone else thinks is good for me, done to or metered out to me ? I hate that feeling and hate myself for having that feeling 36 years after I have left school.

What makes me really angry is that all I've ever asked for from the original dentist and the hospital is a a very little time and a proper reading and addressing of my questions,. When I sent similar letters to the original dentist her response was
'Well, none of my other patients make this much fuss....but then...we've got a receptionist with M.E...she's never here. Always depressed...she's gone down that route' (make you own minds up about her attitude to PWME...anyone hear a little voice saying 'waste of space, wimps, malingerers ???)

Yesterday was hell anyway with builders banging constantly, daughter's birthday coming up, cake to be made, presents to be wrapped, son also at same hospital for another appointment. It took all I had to get to the hospital yesterday and our conversation could have been held over the phone: no journey for me, no waiting, no taking up valuable time of surgeons, secretaries, getting in the way of patients who also had busy lives but who really needed to see a dentist in person.

Why will nobody listen to me ? Is it too much to ask ? and what do I do with this latest fobbing off about having a lower seventh and a wisdom tooth out with only a local ?

Rant over ....well nearly....

* Having said all that I recognise that there is something else going on here and it probably has something to do with my whole attitude to authority and, in particular, to the medical profession.

Don't get me wrong: without the NHS my son would probably not be alive and even if he was he would be in much worse health than he is. In a crisis and where children are involved, the NHS works miracles.

On the other hand, I have seen other relatives go through hell, placed inappropriately, doctors playing God, expecting to be treated like God, being unreasonable (when my mother had terminal cancer she fell and had suspected fractured hip and the A&E doctor wanted to send her home. It was only because my partner and myself physically stood on front of him and told him if he sent her home we'd report him that she stayed in hospital...and even then she ended up on the wrong sort of ward, where all her drugs were messed up , she was not fed or changed and she stayed there until I begged the local hospice to provide a bed.) and at the same time I have worked in the NHS and seen the disorder and waste first hand. I know for a fact that yesterday's oral surgery clinic (every Tuesday 9- about 1.30) had 29 people to see and that is a 'light' day...usually it is around 37. How in God's name can anybody --even the grumpy 28 year old..be expected to process 29, let alone 37 people in about 4+ hours ? The whole system needs an overhaul with patients and staff treated like human beings who need and deserve proper (not begrudged) respect.


Can you tell I'm very angry ? ;o)

'It's all we've got' he says.

Why is it that there seem to be so few doctors who will a) look at the whole picture b) enable patients to try treatments other than those which they (the doctors) specifically agree with ?

These questions and others are the result of the first appointment I have had with my GP for eight months.

As I've said before he is a lovely chap: quiet, sensitive, (appears to be) listening, calm and friendly BUT he is not pro-active.

In all honesty I only went to see him because my Pensions Company have sent me the usual 6 monthly 'greeting card' asking how I'm getting on, will I return to work soon ? have I done any trampolining/ sky diving/ pot-holing ? do I intend to make a trip anytime soon to any part of Africa on a mercy mission for a charity and transporting myself there on a unicycle ? The answer to all the above is, of course, 'No.....I have not , cannot and its very unlikely I shall be involved in any such activities for the foreseeable future.' Still they have to ask and then when they have asked they double check that I'm not capable of work etc. etc. by asking my GP and asking him to complete another form --- which, if I ask ever so nicely, I can see before he sends it off....so I do because I want to know what's being said about me. Except that for the past 7 or 8 months I haven't bothered to see him because he's ineffectual and in the past 6 months I've felt like death so haven't been able to get to the surgery: all our conversations have been by phone. Every symptom I've had has been put down to M.E. or fatigue or anxiety.

Four days ago I finally went to see him and the form. I felt like death warmed up but I had to go no matter what (the form was going to be sent off the next day whatever happened). The form was fine(ish) ..he hates them as much as me and puts as little information as possible. The meeting was warm and friendly as usual but nothing ever shifts. We never move beyond the third place on the game's board. That's why I rarely see him. It's like a stale relationship where there's nothing left to say.

I went through the past 6 months -- so he knew what its really been like and can put it on the form --- and told him all the gory details. I asked him about the recommendations of Dr Myhill (B12 injections, more thyroid tests), the hypoglycemia ---which he insists is not hypoglycemia but fatigue and weakness --- the upset stomach and about all the talk about M.E. maybe being related to health of the gut and the place of probiotics.

Everything was met with a negative response: 'No', 'It's not been proven', 'etc. etc..
All I was offered was SSRIs (anti-depressants) - the same ones I weaned myself off last year.
I was offered (and reluctanatly accepted) them eight years ago and I'm being offered them again now because they apparently help with IBS, sleep patterns, anxiety: so not especially because of any depression. Although it has to be said that after the past 6 months I've got a bloody right o be depressed ---well more pissed off really and angry and frustrated. Still the pills are his answer --- to everything.

'It's all we've got' he says.

It's all we've got. Is it ? What about all the other stuff I just mentioned that you've just dismissed ? What about taking a chance to see if any of them might make me a bit better. I can't access any of those treatments without a GP's agreement so I'm stuck ......and I'm sick of it.

The last six months have been a total wash out. I'm nearly as far back as I was eight years ago.
Every day is a struggle and when I try to get out and about it's hell. Every trip, every journey is torture because moving and traveling is so hard for me. My memory is shot. My ability to talk for any length of time, to be creative (even if it's only bloody sock monkeys and fairy cakes) is gone and the blood sugar problems , orthostatic intolerance, fatigue, problems with sight and hearing continue and I'm sick of it. I'm even too unwell to get to my Reiki healer or to the osteopath. I've given up so much these past eight years and spent so much money on vitamins, herbs, consultations and I'm still stuck here ploughing on with no real medical support. It's all hit and miss.

Maybe the slow decline over the past nine months is down to lack of Sertraline. Maybe if I start taking them again it'll all come right (yeah right !!!) or maybe it's coincidence and I'll stay the same as I am until fate decides I should get a bit better and then I'll be on bloody anti-depressants as well.......but what other option do I have when there are no other doctors about who have a more adventurous approach. I've asked around about other GPs in the practice and other surgeries too and nobody knows of anyone better. So it's better the devil.......and I fell I should just roll over and take the tablets like a good patient. Maybe he's right


In the meantime there is talk that there is a specific probiotic which may be very helpful to people with M.E. (see links in last post) : only available in America but, as it's my birthday soon, I have decided to spend $77 on myself and have some shipped over in the hope that it may move things on a tad.

Despair and anger

Sometimes I despair of humankind and how we deal with each other and look out for each other. It's always been the same. I've always felt like this --- even as a child. Now I'm a 'grown up' my despair has broadened when I see how we attempt to care for each other through the various services that we have set up as a society --- the NHS, Social Services, Education, Mental Health, Crime and Policing. I despair, not because I think the people 'on the ground' --- who do the actual face-to-face work, are inept but because all the well meaning procedures, paperwork and planning gets in the way of proper, responsive, person-to-person caring.

In the last few days there have been incredible, painful, stories about the attempts of local and national services to provide care for vulnerable children. They have been found severely lacking (an understatement). If common sense had been allowed to prevail a child might be alive today and being cared for by people who are capable of such love and nurturing

In the last few days I have met a friend who's mother has terminal cancer. My friend is beside herself because she is bringing up two children alone and lives 40 miles from her mother. She has tried and tried to access services to support her mother as she dies and found no help at all -- not from Social Services, not from the GP, not from Macmillan. No one seems interested in offering this dying woman the support she needs just in terms of personal care and help with the domestic routine. Apparently her mother doesn't fit into the right boxes. She slips between the 'safety net' of Services. Last week my friend and her brother were so desperate that they resorted to taking their mother to Casualty and begging for help. None was forthcoming.

When my own father was declining into that troubled ocean called Alzheimer's he only got some of the help he needed because I had worked within such Services and knew where to go, who to ask. He only got other help because my partner works in a similar area of work and knows how to use the system. When my mother was dying of cancer she only got what she needed because my partner and I worked tirelessly and doggedly to get her the help she needed. We begged and harassed and became a bloody nuisance until people responded. It shouldn't have to be like that.

In the last few days, the parent of a child in one of my children's class has been convicted. That child's family live on the 'wrong side of town'. They are a loving family but vulnerable -- very vulnerable. They were always vulnerable ---- even before this latest event. They are not bad people. They are troubled, unwell, uneducated, lost. The parent who is now left alone is incapable of managing alone for a whole variety of reasons. The Court made it clear that imprisonment would make things worse for the family but they convicted anyway and now they have moved that convicted parent to an Institution 60 miles away to a place where access via public transport is very difficult. There appears to be no support from Social Services and none from the mental health team. If appropriate support had been put in place before the 'incident' occurred that parent may never have reached a point where they would be involved in a criminal action. The family and the extended family is in disarray. They are falling apart and everyone knows about the whole sorry business because it was reported in detail with addresses and names in the local paper.

In the last few days our elderly neighbour fell and broke his pelvis. He had been having terrible pains in his spine and other joints but our doctor (for we share the same GP) had decided these were just to do with 'old age' and declined to do any tests. It now turns out our neighbour has osteoporosis which explains his pain prior to the fall and also explains, in part, why the break was so severe. Our GP could have investigated the neighbour's pain more conscientiously. He could have prescribed medication to prevent further deterioration (this has been going on for 3 years) but he declined to do so. There wasn't time and it's easier to put everything down to old age. If the GP had known about the osteoporosis he could have put in various aids about the house so my neighbour was less prone to falling...but he didn't. Now the neighbour's in hospital and the nursing staff are regularly forgetting to give him/help him with his hearing aid and so have resorted to shouting at him or getting cross when he doesn't seem to respond to their questions or requests. They've been telling him he'll have to wait when he needs the lavatory. They are overworked and understaffed. So far he has had two 'accidents' and is ashamed and embarrassed. It's nothing new. When I worked in a hospital for people with learning disabilities over 25 years ago it was well known that a certain member of staff would deliberately leave one old lady in her wheelchair right near the entrance to the lavatory but pretend to not hear her cries for help in getting to the loo.....so she would wet herself and he could come over and shout at her. He could have the power and enjoy her humiliation. Everyone knew. We just needed him to be caught....and he was......just desserts. But where does that kind of cruelty come from ?

I have no answers for all this. I only feel despair and anger: despair and anger at individuals within these Services who seem either to work without compassion and should never have been employed or are made to work to strict guidelines and procedures which don't allow for or recognize common sense and gut feeling.

Procedures, procedures....always the paperwork, the forms, the meetings and the middle management --- never the common sense. There are people at the 'coalface' who see the families, see the children, see the old people and their despair and pain and needs and KNOW how to respond because the relationship is based upon one human being to another without the wall of bureaucracy and the constant reflection back to budgets, timescales, productivity, certificates and more bits of bloody paper. Most people in the 'caring professions' are there because, by nature, they care. They are blessed with an innate ability to respond to others' needs and know what they have to do. If their voice was heard and they were allowed to act upon their common sense, I am convinced that lives would be happier, that lives could even be saved.