Tuesday, September 1, 2009

WE'LL ALL BE OLD SOMEDAY

AN OPEN LETTER TO THE QUEENSLAND PREMIER ANNA BLIGH

Today was the low point in my mother’s Queensland Hospital Experience.

Today she was let down by Queensland Health.

My Mum, not three weeks ago was living a normal life. Unbelievable as it sounds, my 75 year old mother, apart from having limited sight due to Macular Degeneration, has barely had a sick day – she was as happy and healthy as a clam.

Then she lost strength in her hand. The grim news of a secondary tumour in her brain that had spread from cancer in the colon, liver and lungs caught us all by surprise

The speed of admission into hospital was to be admired. It was immediate. What a great start to our Queensland Health experience.

Please know from the outset, this is not a letter of criticism about the nurses, the doctors or support staff. This is a plea to you, the politician, who in all honesty will never experience a day as a patient in a public hospital, to listen and to fix the overcomplicated system.

A hypothetical if you will...

Imagine your mum, being 75, gets the most devastating news of her life. In lightening speed her normal old life of hanging out at home babysitting her grandson once a week and going down to the local shops, is no longer a reality.

Instead she is incredibly frightened and fearful for her future. Imagine now she is given no details regarding the course of action that is imminent. Instead, she is admitted to a hospital ward, fed 3 meals a day, shares a ward with not one but two violent junkies and sits around and waits.

With me Anna? Next, imagine, you as her family, after repeated requests to be kept in the loop, hear nothing.


Next imagine Anna your mother is advised she requires a major brain operation to remove a large tumour. You as her family, as her child have still been told NOTHING. You are not even allowed to stay with her the hour before her operation. The operation she is, to be blunt, scared out of her fucking mind about. Think about it Anna, this might be the last time you may speak to your mother or she to you, ever again.

So now imagine your mother has come out the other side, is in ICU and finally, the surgeon is telling you that you will now be supplied with a meeting with all specialist doctors involved to discuss the future and what services will be available. Imagine your relief that you are finally getting some answers and that you mother is alive and relatively well.

I need to you concentrate now Anna because this is where the system that is QLD Health is redundant.


Imagine now, your mother goes back to the general ward and she is seeing a doctor daily. Fantastic you think. Not so. See, being the recipient of a major brain operation, she cannot retain the information that is being delivered to her. You, as her child, still cannot make sense of what the outcome of her operation is nor what her future holds, because no one will tell you anything.

Imagine then Anna, your mother wakes up during the night, two days after having her operation and she cannot stop crying. She can’t tell you why. A rational person Anna, understands this is depression and is perfectly normal. Imagine then Anna, being her daughter arriving to visit and your mother sobbing and not being able to stop and your hopelessness at the whole situation. Imagine your frustration after 3 repeated requests for a social worker to see your mother, she still is being left alone to sob at night.

The worst though is still to come. See today the rehabilitation worker comes. Something your mum is looking forward to as she is expecting to receive some exercises instructing her how to improve that hand that has regressed since the surgery. Imagine now, how she feels after the rehab worker tells your mother, alone, with no support to understand her words, that there is “no point” working on her hand and basically giving her no hope.

Thirty minutes later, your mother is addressed by the oncologist.

Keeping in mind, your mother is almost blind, cannot now move by herself and has been basically told to give up and is sobbing, once again alone. At this point she is told she will have to have a colonoscopy and could she "possibly" tell her usual doctor next time she sees him?

So a 75 year neurologically compromised patient of QLD Health who is basically blind is being told to pass on a message, she may not remember, to a doctor she cannot see . A very important message that will ultimately make a huge difference in her cancer treatment.

Did I mention your mother is still crying at the drop of hat, has been given zero incentive to be positive and was given the devastating news of possible life expectancy ALONE due to a lack of a simple phone call to you, her only family?

I’m well aware the hypothetical above means nothing to you. You would get the best care. You would not be dicked around with bureaucracy and the hierarchy of a public hospital.


But see, our frustrations stem from the lack of communication. The lack of courtesy. We are not numbers. Our mother is not simply nothing just because she is older and has advanced cancer. Your duty of care is to do the very best you can. You are failing.

If Queensland Health were my own personal business and it was consistently failing to provide the services I was offering and the complaints were outweighing the praise, I would either be arrogant, ignorant or just plain stupid to not try and find the fundamental faults in my system and change these.


When you read this Anna, I expect your first reaction will be to fob this off to your Health Minister and his general area. I don’t know his or her name and I don’t care. I expect there will be a generic response generated that generally appeases the minions.

But see when you put your hand up to be Premier of Queensland; you took the healthcare of all Queenslanders in your hands. If you think of it any other way, then you shouldn’t be the Premier of Queensland.

What I do expect as a federal and state and local tax and medicare levy payer is for you to organise and delegate qualified staff to fix the Health Care and its archaic systems

Myself, my family and my mother have the right to this “free” service. At no time should we feel as if we are mooching off a system because we, the people of Queensland deserve equal service for what we have paid for indirectly for all of our working years.


A system needs to be set up that informs patients and family of vital information. Information to resources and available services both in and outside of the hospital.

At the end of the day, what I want for you is to stop the bullshit.

Create a system where the mountain of red tape is removed. A system that creates a circle of care.

A system where I can ask once and I get a response to my request. At the very least.

I know your answer will be that the hospitals are understaffed and under resourced. FIX IT. I would rather our sinking ship of a state be in debt due to you fully subsidising the education of nurses and health professionals than a new footbridge or another motorcar race.


Bernadette Morley

31 comments:

@sherod said...

The same level of communication occurs in Private healthcare.

My 80 yr old Grandfather has a leg operation, it became infected, it took my father, an employee of the hospital, to take digital photos of his wound to the Head of Nursing before the issues with wound treatment were dealt with.

When my father was in ICU, we too suffered from contraditory information, partial communication and long periods of silence, there is a real issue with medical establishment working together to give a consistent message to patients.

It's not that hard if they wanted to, but I think it gets overlooked, you can't have 10 people working independently to make something complex happen, passing notes at the end of the bed.

And I think that is what is wrong.

I agree with everything you've said.

Leonie said...

I hope she reads that & is as moved by it as I was. My heart goes out to you.

Thea Smith said...

Oh Bern...you must have such a heavy heart. You've expressed so beautifully the faults...why doesn't someone listen??? You're right, because it's not happening to their family. I pray that someone will hear you. xxx

Anonymous said...

I cried when I read your post - my dad died of a secondary brain tumor here in British Columbia,Canada, and our experience as a family was so different. Granted the specialist he had an indifferent beside manner that a lot of oncologist/neurologist have, but as a family we were permitted/encouraged to participate in his treatments. We only have public hospitals and everyone is treated the same as money does not come into it. Stay firm and insistant, you are a supportive daughter and it is your (and your mom's right) to walk this path together.

Cate Bolt said...

Bern, what can I say. This is just crap...nothing short of complete crap. Unfortunately, whilst you would expect that the medical community might have a higher sense of duty and understanding how these actions impact on their patients and their families.. I think the problem comes back to the state of humanity in general. Humans are evolving into self-absorbed, heartless bastards - to be frank.

Anna Bligh won't be concerned with the details of your mother, as you suggested it will get passed on to someone else and you'll get some sort of self-serving political bullshit response, if in fact you get one at all.

This is a lesson to everyone, that we ALL need to live with compassion and take a moment to think about how our actions at every stage throughout the day are impacting someone, either directly or indirectly and actually make a commitment to ourselves to change.

It really is time to put the "care" back in healthcare.

Anonymous said...

Bern, I am in tears. Health services in this country are a joke.

We had similar experiences with our mother, but she was a patient in a well known private hospital in Brisbane. Believe me, the private system is just as bad. Mum was told by a dietitian -who was responsible only for the TPN drip she was having because her oesophagus was inflammed from radiotherapy and she was unable to eat- that she needed to tell the people who were looking after her that they need to stop wasting resources, she wasn't going to get better. When Mum told me this I told the nursing staff and then the next visit she had was from a Palliative Care doctor she had never seen before discussing how long she had to live. I just happened to be with Mum at the time, but if I hadn't been, there was no notice that this person was coming so she could have just as easily been alone.

I could fill a book with experiences similar to yours- I feel for you and your Mum. All I can say is make a noise. Keep asking questions and don't stop til you get answers.

Whilst I believe for the most part health professionals are hardworking, overworked and under resourced, I do believe the standard of care at the coalface has dropped below acceptable standards and those reasons don't cut it.

I am a registered nurse who no longer works in hospitals and I can tell you patient care was vastly superior 30 years ago.

Gabbie Smith said...

Bern, stand strong. As hopeless as it may feel at times, speaking in a loud clear voice about not taking this shit anymore surely has to be heard by someone somehwere. Like someone else said here, we are living in times where compassion is no longer considered a virtue worth striving for and that is the basis for the decay in the world today methinks. If just one doctor stopped and thought about the family and feelings of the fellow human being lying in the bed in front of them, it would be a step in the right direction again.
Good luck and I hope someone listens.
Gabbie

Aneets said...

I'm so sorry for what you're going through.

Thankfully I have only had good experiences with the health system in NSW (I know, I'm shocked too!) and I hope things improve for you!

h&b said...

This is so awful - I am forever reading about Qld Health here in VIC ( perhaps to take Victorians feel better about our own health problems - 'Hey, at least we're not in the Qld System!'.

This was such a heartfelt and desperate letter - I really hope Ms Blight reads it.

I'm retweeting, and i'll blogref it also - too important to ignore :(

Bec said...

I'm so sorry Bern :(

My mum was hit by a car in 2007. She was left in the ward for almost a week before her knee was operated on. Mean while she had to get in and out of bed--often by herself--to use the bathroom. The one day a nurse "helped" she left the door unlocked and another (male) patient walked in on her.

I hope you can get some help and information.

Kathy said...

Just terrible. Terrible. What a disgrace. I agree with the commenter above - in Victoria things can be ordinary, but rarely this shite. I only hope that something changes for your poor Mum.

Michelle said...

I'm sorry you and your mother are having to go through this. My Dad is in QLD and has had some bad experiences with the hospital system on the Gold Coast. Yet they are spending millions on new sports stadiums... not good enough.
I hope you can get some communication you need and deserve.

Leah said...

As a 2nd year nursing student, this makes me heart sink. That the system could fail you so much is horrifying to me. As students we are taught to be advocates for our patients- do nurses really forget this so quickly?
I hope that you and your mother get the support you so desperately need.
Also, dont forget to look after yourself, as this must surely be wrecking havok on your emotional health

Aussie-waffler said...

Oh Bern, what a horrible, horrible time for you and your family. I am so sorry to hear about what your poor mum has gone through, it's disgraceful. I really hope you get some answers and that things improve, as much as the can. We're all behind you in the Twitterverse. xx

So Now What? said...

Can I just say a massive thank you to all who have posted comments. Your stories amaze me and your support is SO appreciated. I am seeing the shitty side of the life and the fantastic side of people, all at the same time :)

Blomsters said...

Hey Bern,
We had cause to visit the hospital this time last week after an incident between my bf and a circular saw - after 24 hours of treatment i can completely understand what you are going through and am so sorry to hear the treatment is so woeful. I do hope Anna reads this - if she has time to compete on Masterchef she should have time to read this!
My thoughts are with you.
Wxx

Sparkly Tiara said...

Oh Bern, I am in tears. I am so very sorry to hear what your mother has been through, and outraged that she has been thus treated.

That's a fantastic letter, and if you don't get a decent response to it, then Anna Bligh has a heart of steel.

My thoughts and prayers are with you all.
STxxx

So Now What? said...

Once again, thanks so much for all the comments. Anna giving me some face time soon so any grievances or personal experiences, please let me know.

Jo Miles said...

Hi Bern,
I like everyone else had many tears in reading what you have written. I just want to say it breaks my heart as well as knowing your mum as a beautiful no fuss women who would NEVER ask for anything. I am so glad that YOU are her daughter and that you are there trying to fight for her rights. The Qld hospital system is a joke and I know that all the staff are doing there best but there bosses aren't. Shame on you Qld Health shame on you.

Kristieraeofsun said...

Stay strong and tough. YOU and your siblings are your mothers advocates FIGHT for that right, throw a tantrum in a ward at a DR or nurse if you have to. You must be an advocate for your mothers treatment & care...you must be informed now that she does not have the capabilities to retain important information.
You, your family & your mother have been treated poorly. It's time to get loud. Thank you for sharing your story which i'm sure is all too common.
You know how to put your foot down with your kids, you can do it with a Premier, you're a carer now, stick it to the man!! ;)

Bianca said...

Hi Bern, I really feel for you and the rest of the family. I know what you are going through as we went through a similar thing. But ours happened to be in Holland.

My mother had a brain tumor which was secondary which was inoperable. We got no information in regards to the outlook, were just told that she had to stay in hospital while they did more tests.

As I travelled overseas with my young son and left everything behind in Oz it was hard for me.

It came to a point where we threatened the staff that we were going to find the specialist in the hospital and would not leave untill he spoke to us as we were told he would speak to us in a week or two. Mind you this is after 4 weeks in hospital! After this we were then told he would give us 5 mins of his precious time! This was the meeting where we were told mum would have 1 year to live if she was lucky! They knew, but didnt tell us.

It was hard as mum could have been at home for at least 3 of those weeks enjoying the time she had left.

I know times have changed and money is short. I myself worked in the healthcare industry here and in Holland and got out as they just dont seem to care in Australia.

I applaud you for your courage and writing the letter. I also wish you, your mother and your family the strenght you will need for the future.

So Now What? said...

Thank you for sharing Bianca. I guess if enough "little" people starting making a noise, it might just turn into an unavoidable racket. Thanks again and I'm sorry Bern x

Anonymous said...

Bern, it breaks my heart to know what our dear Aunty Betty is going through. She has been such an inspiration to me and many others. NO BODY deserves to go through the treatment or lack there of.
Anna you really need to do something about our hospitals and the well being of our patients- if you only knew this woman you would ACT on this immediately.
PLEASE DO SOMETHING- this is criminal!! My Aunty Betty is the most incredible woman who has been through so much- yet would never ask for anything. Don't take away her dignity- give her and her family the care and information they deserve.

Fiona Dixon said...

Well Said!
Im sure your Mum and the rest of Queensland will be ever greatful for you standing up and sayin something.

Anonymous said...

Hi Bern.

I am so sorry about your mum... I would like to tell you my story well my son's really..

Last year I went to pick my 8 year old son up from his fathers after he was there for the school holidays, when his father informed me that my son was hearing voices telling him to kill himself now as a mother i was quite upset by this so i went to my local GP by myself as I did not want my son to think something was wrong.

I asked for a referral to a specialist my GP referred us to Child and Youth Mental Health (CYMHS) I asked his father and partner to come for the assessment... they spent 20 minutes with us then spoke to my son for a further 20 minutes after this they said they would be in contact...The lady that did the assessment was a psychologist

A few days later I received a phone call from the same lady saying that they had discussed my sons case and decided that he had social issues and an over active imagination and referred us back to the school guideance councillor.

The councillor spent 45minutes with my son and myself and said that he saw Apergers traits and that I would need to go to a paediatrician as I live 6 hours from Brisbane I was having to try and get into the local doctors but it was a 4 month waiting list so I rang every doctor in Brisbane and finally got him in to a doctor and got the diagnoisis of Apergers...

but still the voices continued and were getting to the point of they wanted me hurt and by this stage he was 9 years old and he was getting very distressed that he was going to die and that it was going to be soon......

I went back to my local GP and demanded a referral to a psychiatrist and that i wanted to go to Brisbane as I did not want to go back to Queensland healths CYMHS...

I got into a doctor in Brisbane and she was extremely concerned about my sons condition and ordered lots of tests to eliminate organic diseases. We had the test done and found there were no tumors no epilepsy all his blood work was clear..

We then went back to Brisbane and his doctor made the diagnosis of psychosis this was a relief and such a heart breaking moment cause I thought back to when he was first seen by CYMHS and they said it was an over active imagination I was so angry....

since then we have been travelling back to Brisbane at least once a month although I use the patient Travel scheme to pay for the flights cause being a single mum I could not afford the travel...

On one of our trips to Brisbane my sons doctor changed his medication and within 3 days my son was hullucinating and did not sleep for 24 hours I went to our local hospital at 3 am and sat there till 6am and was then informed they would not call the doctor in as he was not life threatening... I then decided to go home I rang my sons doctor and she wanted him to go to a larger hospital which was 45 minutes away but wanted him admitted and to have a mental Health assessment...

I arrived at the hospital and was seated with everyone else while my son saw and heard things that were not there I was tired and upse... we saw a doctor and then he was going to contact the mental health unit...

The psychiatric Registra turned up spent not even 10 minutes with us and then told me he had to go back to another patient and would be back in half an hour and an hour later he returned and told us to go home that they could do nothing I explained that his doctor wanted him admitted and that i didnt think i could stay awake for another night he then told me to find someone else to look after him this being the second time that they had not helped me when I needed it.....

I have since been back to my sons doctor in Brisbane and we have agreed that we can not rely on the local health system and if it is ever to happen again I will have to take him the 6 hours to Brisbane

Life In A Pink Fibro said...

Fuck Bern - my heart breaks for you and your family. What happened next?

Thanks for Rewinding at the Fibro.

Susan @ Reading Upside Down said...

I'm so sorry that you had that experience with your mother. How awful for her and you.

The issue isn't limited to Queensland. My grandmother was in and out of hospital for several years in her mid-80s. We had nothing but trouble trying to get the hospital staff to pass information on to my mother or my aunt.

In addition, information that was on my grandmother's chart was repeatedly ignored as new registrars treated her in emergency and assumed that they knew more than previous doctors and my mother and aunt who repeatedly stressed that a particular medication was NOT to be changed.

It is so disappointing (not a strong enough word really), having my grandmother treated so dismissively at a time when she most needed to be cared for and supported.

The health system is in urgent need of improvements Australia wide.

Lucy said...

Oh Bern. This is terrifying. And it echoes a lot of what is happening in my world at the moment (within the pulic and private health system.)

You are one of the most articulate chicks I know, who blogs so beautifully about really vile and horrible stuff.

I am so sorry. xxxx

Anonymous said...

So you want to blame Anna Bligh for your troubles? Maybe you can get a Liberal government like we have in WA. Then you will really understand what it means to rip the guts out of health care.

Being Me said...

What an absolutely desperate situation. Are there any posts you can point us towards about the outcome? Was there that face time with Anna? Did ANYTHING change? What happened with your dear Mum? xxx

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