Friday, November 20, 2009

The D Word

Nurses, doctors, medical staff. They do a tough, backbreaking, heartbreaking job. I couldn’t do it. Not at all. And I want to make that clear because there is a part of me that is just instinctively opposed to slating anyone in the medical profession.

But I can’t deny I am becoming more and more frustrated, disappointed and just let-down with the service my family is getting from the local hospital.

My grandfather is still in hospital. All week we’ve been getting reports from the staff on his ward that he is fine, that he is stable, that he is doing well. Yesterday morning we even got a fantastic report that he was doing very well indeed and was up and chirpy.

Then yesterday afternoon, out of the blue, a consultant advised us that actually he is doing very badly and is very poorly indeed. So much so my mother is rushing down from Sheffield tomorrow to see him. Things don’t look good.

I realize people can go downhill fast – especially when they’re old – but this really sounds like there has been a case of crosswires and misinformation. I sometimes wonder if the hospital staff are even talking about the right patient when they give us information about my grandfather.

There is also a massive and often very worrying omission of facts.

My grandfather has developed Clostridium difficile (C. diff) – not for the first time I hasten to add. It seems to be as a direct result of being admitted to hospital and pumped with antibiotics. He is very poorly with it and given his frailty the hospital has few options of how to treat it. Higher dose antibiotics could have an adverse effect and surgery to fix the resultant lump in his stomach / abdomen is off the cards because it is doubtful he’d survive an operation.

As C diff is very contagious it makes visiting him difficult – I have two young children and my parents both work with food and children; we need to be careful about not carrying any infection away from the hospital. Luckily my mother had tipped me off about his C diff diagnosis before my last visit and a good job too. The staff nurse, when told who I had come to see, merely waved me to his room and didn’t check to see if I knew of his condition or make any attempt to ensure that I took adequate precautions to prevent the spread of the disease. For all she knew I was just someone off the street who had no prior knowledge of his condition whatsoever.

This lackadaisical approach appals me. Again it comes down to poor communication and a reluctance to pass on necessary information. Surely this should all be part and parcel of the care package – keeping the next of kin fully and accurately informed?

Or, with the supremacy of the internet, should I be doing my own online Google research and Wikipedia-based prognoses? Or maybe checking the hospital’s Twitter account for updates on the state of my grandfather’s health?

My grandfather is dying. I shouldn’t have to bang my head against a brick wall to maintain a link that is already fading fast of its own accord.


35 comments:

-eve- said...

Oh Steve....
It's sad that he's dying. And visiting hours are so limited. Sometimes I really wonder if hospitals do any good - especially when I see the line of people arriving at the A & E. They have faith in hospitals - and I guess it's because from the days of cavemen, they had no other choice, no other hope of cure. If there's no cure, I'd say go home. If there is, one just has to trust the hospital, I guess. Hang in there, and keep standing up for him - it makes the difference :-)

Clippy Mat said...

your last paragraph is heartbreaking.
no you shouldn't. but this, sadly, is the world we seem to live in now.
you've done all you can. just be with him.
hugs :-)

Steve said...

Eve, Clippy Matt: thank you.

Mark said...

I guess your presence will be most important to him now.

We have found NHS full of misinformation too, but then that also happens in my organisation, and in our family, and at the paper shop...

Steve said...

Mark: I'm sure you're right. Misinformation is just endemic in the modern world... we just notice it more in times of crisis.

ArtSparker said...

My mother is on hospice at home, after being in and out of the hospital for a month. Runs my father ragged, but this seems to be the best choice for both of them. Doctors=authority, as in limited perception and prescribed pathways. The individual needs to advocate for his own health care, or have someone who isn't medical staff do that.

Steve said...

ArtSparker: unfortunately, given my grandfather's current condition, anything other than a hospital bed is just not an option... and we don't have the wherewithal to go private.

Trevor Gay said...

Hi Steve. Trevor here – as in Annie and Trevor :-)

Hope you are well. You have my sympathy and some understanding.

As you may know I worked for 35 years in management in the NHS and your story (sadly) doesn't surprise me. I keep telling myself things are much better than they used to be in the NHS. I’m sure that is correct compared with the days when I started. Patient expectations have quite rightly gone up and this expectation of the customer is driving standards up slowly ... and not fast enough as far as I'm concerned.

I am however still passionately in favour of a National Health Service and will always defend preservation of our NHS over a private healthcare service for many reasons I haven't got time to go into here and anyway you would probably lose the will to live if I went on too long!

I know there is a very long way to go to make the NHS work more effectively for all patients. That depends to a large degree on the skills of the individuals involved in the care of the patient. Effective communication is at the root of that. People of course, are people ... and people don’t always get communication right.

The vast majority of the public of this country rate the NHS very highly and when compared with healthcare systems in most other modern countries, our NHS always comes out favourably.

'Customer Care' training in the NHS is something I do a great deal of nowadays. Annie and I also do various workshops together around customer care. There is a long way to go and you are so right Steve to express your views forcibly. Please keep doing that.

I’ve worked with hundreds – probably thousands actually - of doctors during my career and many more nurses. The huge overwhelming majority want to do a great job for the patient. They are caring people, professional and conscientious. Sadly it does not happen 100% of the time.

Keep smiling and I wish you well Sir .... and of course please accept my very best wishes and prayers for your beloved Grandad.

Steve said...

Trevor: thank you immensely for your insider perspectives, it's good to have the issues fleshed out a little more. As I said in my post I am still reluctant to slag off the NHS - I think the concept of it is still something to be proud of. Like you say, people are only human and fallible. Despite the shortcomings I know things would be a lot worse in other countries.

KAZ said...

I found myself waiting in a hospital ward last week. The staff were knowledgeable and lovely but chaos ruled.
All the visitors, taxi drivers, casualties and patients in the beds were using the same loo on the corridor.
That can't be right can it?

Steve said...

Kaz: that sounds truly appalling. It's not right. It's not right at all.

Tenon_Saw said...

I seem to remember a Patients' Charter arriving on my door mat - what - 10 years ago, maybe more. What you describe is truly dreadful and your concern about C.Diff and your children quite wise.
It would be worth - IMHO - either alerting the hospital management to the situation, or you MP, or anybody. I recall that TV undercover investigation of hospital hygiene; not good.

You are too English. You need to DEMAND better care for your relative; easily said (typed) I know.
My thoughts are with you.

missbehaving said...

I'm sorry you, your family, your Grandfather are having to go through this, I am with -eve- on this, being there, satnding up for him makes a difference.
All the best.

French Fancy said...

I'm so sorry to read this because it sadly reminds me of what I experienced with the Royal Free in London when my father died there. His notes were muddled with someone else and it got worse and worse - so much so thay I involved Glenda Jackson, the MP for Hampstead. All got resolved and the hospital put new measures in place.

However that doesn't help your grandad or the family.Grief however has propelled your writing to another dimension.

I'm really sorry this is all happening and hope that the end will be quick - it's so much better than someone just hanging hopelessly on.

Steve said...

Thank you all. Heard last night that my grandfather is on morphine. Even without any real medical knowledge I know that that isn't a good sign. I'm going to see him later today.

Gypsy said...

I am terribly saddened to hear of your Grandad's plight. Surely he and your family deserve better than this. We're talking about quality of life here and it seems your Grandad doesn't have too much of that.

I am truly heartbroken for you Steve as your love for your Grandad is a shining thing and shouldn't be tarnished in this way.

Steve said...

Gypsy: thank you. In terms of care my grandfather has little complain about - it's just the lack of communication and all the confused paperwork that is driving me and the family mad!

French Fancy said...

can I ask a quick favour - I've been trying to access justme's blog but she has made it private. When you next go in there - if you still do - can you please ask her to leave a message on my blog. I don't want to lose touch with her - thanks Steve
Julie

Gina said...

Big hugs, Steve.

I kind of wish we were back in the old days where people weren't kept alive so long and could just die at home when they were ready. That is what I would prefer for myself (not now, obviously).

I think the NHS is great for crisis care and for the big treatments and operations but not great for dealing with the elderly and situations where care is ongoing and less specific. Like you say, there are too many people involved and they don't talk to each other or to you.

But I hope your grandfather either rallies quickly or passes away quietly. I suspect he would prefer the latter going by what you have said before.

The Crow said...

This is one of those times when all the words in all the languages in the world will do little to make the situation better. I hope your knowing that so many people are thinking of you and your family, holding you in the Light, so to speak, will help in some way.

Martha

Steve said...

Thank you all for your kind thoughts. Glad to say that although he is very poorly he's not as close to death's door as we were led to believe yesterday - yet another case of misinformation and crossedwires. It also seems that although he has indeed been prescribed morphine he hasn't actually been given any yet - it's just on "standby" in case he does. A big difference in interpretation I'm sure you'll agree. It does seem unlikely that he'll ever return home again as he needs 24 hour care... we're very much in the hands of fate. He could take weeks or months to recover or recover not at all...

FF: I'm also unablw to access Justme's private blog so if she's reading this I hope she gets in touch with us both with details of how to!

Valerie said...

Most of what I wanted to say has already been said, Steve. In your position I would be with your grandfather as much as you can, he deserves your presence at his side. However, at some point a strong letter should go to the Hospital Administrator or higher so that at least there is some knowledge of the way things are done or not done and rectified.

Steve said...

Thank you, Valerie, your support is appreciated.

Valerie said...

Apologies for the poor grammar!

A Write Blog said...

How sad.

I do wonder that our modern world is more prone to things like this happening.

The old fashioned disciplinarian attitude to hygene in hospitals would not be tolerated by the staff now.

But, unfortunately it is necesary to keep some of these infections at bay.

Steve said...

AWB: I couldn't agree more. Getting rid of the ward matrons was a big mistake.

Owen said...

Steve... sending wishes for strength and patience for you in dealing with this ordeal... the wheels of the universe are turning.

I often wonder if our "modern" way of life and the corporate "culture" within many organisations is perhaps producing more and more people who are only moderately comptetent and only partially involved in what they are doing in settings like this. Seems to me we face more and more miniature nightmares due to people or oganisations not doing what one would think they should do... and this is extremely frustrating and irritating.

I may have mentioned some time ago my daughter had a brush with death in England when while on a school trip to Manchester she came down sick, and was sent away twice by the hospital saying she just had a gastro that would pass in a day or two, when in fact she had acute appendicitis that had gone gangrenous by the time she was finally operated. How such a mis-diagnosis could happen left us mystified and angry, but there is no one to vent your anger at in a case like that, and it wouldn't do any good anyway I fear.

Onward through the fog ...

Steve said...

Owen: yours is a truly horrific nightmare - I'm so glad it ended well, but what a shake-up to your faith in modern medicine! I can't complain about the physical care my granddad is getting but all the periphery stuff is appalling - too much handing over to too many other people, few people with an overview and even fewer with sutained personal involvement... mistakes and confusion are bound to be rife.

The Poet Laura-eate said...

So sorry to hear of your grandfather's condition.

And appalled (if not surprised) that the hospital have to compound the situation (if not cause it in the first place) with their slacknes.

It seems that ever since antibiotics came along, basic hospital cleanliness and infection prevention measures have been in terminal decline (which of course used to be their only means of treating such).

All of which doesn't help your grandad - my thoughts are with you. I hope he is at least getting fed and hydrated sufficiently (yet another basic that seems to be going down the toilet at many hospitals). You might want to suggest a rota of family and friends to make sure. And yes, google everything you can - we can survive if you take a break from blogging. Needs must after all. All the best, Laura x

Steve said...

Laura: our reliance on antibiotics is beginning to bite us in the ass with the advent of such diseases as C diff - of course the medical world's answer is to come up with stronger antibiotics... wonder what nature will come up with in return, eh? My granddad isn't too bad. Stable if not well. Who knows what tomorrow will bring?

In the meantime, blogging is helping keep me sane...!

Joe Bloggs said...

D for Detour, drop in and give it go - cheers

Sorry to be so upbeat on a not-so-happy-post, but I just quit going for checkups on you-know-what, coz last time they took a blewit-test they gave me (another) infection. Time b4 that they could hardly give a hoot as I interrupted a chat to tell 'em me bedridden Gran had gone walkabout and broken a hip on the way - tryna get out, no doubt.

Steve said...

Joe Bloggs: thank you for the smile... glad you got the all clear.

Löst Jimmy said...

Hi Steve
Words fail me here, I can only wish your grandad a comfortable time from hereon in, my thoughts are with you

The Sagittarian said...

Steve, what a bugger for you all. Standing up for your Grand-dad and being there for him is probably all you can do in the short term, long term I would suggest a letter to the hospital or at least a meeting with them to go over all this. You're right, this kind of thing never seemed to happen when the Matron was in charge. Hugs to you all.

Steve said...

Löst Jimmy; Amanda: thank you both.