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Tag Archives: Hereditary Spherocytosis

An open letter to Colin Barnett

Dear Mr Barnett,

You must be proud of your state. Western Australia has so much going for it. Per head of population it is the wealthiest state in Australia and is rapidly becoming one of the wealthiest states in the world with more than $170 billion worth of mining related projects still in the planning stages. No wonder you boasted the state “is doing pretty well” and saw fit to travel to China recently promoting WA’s strong economic relationship with the Asian superpower. It is without argument that no other state in Australia would benefit from Tony Abbott’s planned free trade agreement with China than your state.

Yes, Western Australia certainly is doing pretty well, as the above links testify. It’s a healthy state and it is about the grow even healthier over the next couple of years. And right now they are having money thrown at them:

Taxpayers will be stung with a hefty bill to fly WA-based ministers and Liberal MPs, spouses and children to Canberra on a luxury RAAF jet for next week’s opening of Parliament.

It’s nice that they can send the kids too. All that money with nothing better to spend it on, than to spend it on luxuries. But what about kids back home in hospital? Isn’t that a bit of a shame? Surely they could do with some help. Some families get treated to luxuries by your government whereas other kids and other families are subjected to the razor gang which your government sent in last year. Two of Perth’s largest hospitals were advised to cut $28 million worth of services despite the warning this had the potential to have a “disastrous” impact on patient care and clinical standards whilst another had been advised to shed 200 full-time jobs, including those of doctors and nurses. Again, it was warned that this would put patients at risk.

I’ve searched the internet and uncovered numerous press releases about cuts, warnings and risks over the last 12 months. You’re probably aware of the criticism. But there are some stories that don’t make it into the public domain. Those are the stories of children suffering and dying in a state that is “doing pretty well”. In a state, that with all its wealth and resources, takes money away from its hospitals.

Yes, people have suffered because of your cuts. I doubt you’ve heard from them. We have, and here is what they had to say:

From Kate

The scandal surrounding the new children’s hospital in Perth is beyond a joke. They have already cut 100 beds. The health care for children in WA shocking. Young children having chemo in corridors because there isn’t enough beds or chairs in outpatients. Children admitted for blood transfusions because of severe infections and then put coughing and spluttering into a cancer ward with kids undergoing chemo. Parents of the cancer kids pleading that the mother of the child needing the blood transfusion, stop her child coughing. Again because there are no beds. Kids getting shipped interstate because we don’t have enough specialists and equipment in WA. Emergency surgeries canceled because of no beds. Long waiting times. Yet we live in a so called rich mining state. My own son has been in and out the children’s hospital for 4 yrs. We are in crisis where pediatric health is concerned. Yet the WA government sees fit to give a $35 million discount on a piece of land that was sold by the state to Mr Packer, as just one example. So much money misspent or squandered. Yet much essential equipment for the hospital is provided by parents fund-raising. It is a scandal of epic proportion when you start to read what is happening to sick WA children.

There was another case today, poor 7 yr old girl has been fasted every day since Thursday for her PICC lines to go in and it has been canceled every day. So she has been without food and stressed waiting for the procedure only to have it repeatedly canceled. Everyday she is in a hospital bed means somebody else turned away. It’s shocking.

Wow, is that right about Mr Packer? He sure must be short of a few bucks for you to help him out to the tune of $35 million. Sorry, for the state’s tax payers to help him out.

Anyway, we continue:

From Clare

I am pro-extra beds for PCH as a concerned parent of a child with a life long blood disorder. Ellie was diagnosed at 2 1/2 with Hereditary Spherocytosis. We rocked up to Emergency after the GP didn’t like the urine sample we’d taken in but, after a barrage of blood tests and lots of serious doctor faces we were admitted to Ward 3B. No formal diagnosis was made until 2 days later. Ellie’s red blood cells are extremely fragile and the wrong shape so they break down in her body much quicker than normal. The byproducts of this cause her to ‘yellow’ – jaundice, become lethargic, dark yellow/orangey urine, swollen spleen and sore tummy. On that occasion we escaped a transfusion but when Ellie next got a virus her body went into overtime breaking down her red blood cells at an even faster rate. She was admitted and we went through the first transfusion – a traumatic experience for all. Suffice it to say that each time Ellie gets sick with a cough, cold, virus or infection she is likely to need a new influx of blood to helper body recover. The concerning flip side is that the beds we need to use are in Haemotology which share its beds with Oncology- the children receiving chemo – ward 3B. Dilemma – is Ellie sick enough to warrant us exposing all those immuno suppressed chemo kids for whom a cough cold or virus could, and do, kill them!!! Ellie got pneumonia in March and on our overnight stay were in a shared room with 3 kids having chemo. I will never forget the look of pleading in the eyes of a tired mum of a very ill child next to us receiving chemo, asking us to please stop Ellie from coughing. If only we could! Staff always try to get us in isolation rooms but only 1 visit in 4 has one been available. My husband and I have spent nights on the ward in sit up kitchen type chairs in order to stay with our toddler as even chairs are often all being used. We are in dire trouble if the same amount of beds are provided as the numbers of children are increasing on both sides of the ward. I find it unacceptable that I have to delay going and getting treatment for Ellie’s lifelong battle to be well because of the effect it may have on other children. Overcrowding at its best.

From Chris

We are working with a small group who are trying to raise awareness about the importance of including more mental health beds at the new PCH. You may be aware that there are only going to be 20 psychiatric beds available at the hospital, and it will become the only hospital that admits adolescent psychiatric patients. A number of these beds will be in a secure ward – so less than 20 beds available to our young people who are in desperate need. The most recent statistics I have been able to find tell us that 23% of the total burden of disease and injury experienced by Australian children and young people aged 0 – 14 years was due to mental disorders, the largest burden of disease for this age group. We also know suicide is the leading cause of death in people under 25. Twenty beds is not enough.

My personal connection with this issue began when my daughter was sent home from PMH due to lack of beds, and due to a ‘short stay’ policy – even though she clearly stated that she didn’t feel safe enough in her mental well being to return home. That night she took an overdose and we nearly lost her.

I have had experience personally with the state run mental health system. Unfortunately my daughter has needed admission on a number of occasions as she suffers PTSD, depression and anxiety.

She has been admitted to PMH adolescent psychiatric unit (ward 4H) and Bentley adolescent unit (BAU).

In our experience we have found staff committed and caring, but completely overwhelmed by the enormity of the mental health crisis that exists. We found that there were rarely the same staff members in consecutive admissions, so it is always a matter of repeating information to new nurses and doctors.

The 2 most distressing things that we have had to experience as a direct result of the mental health system are as follows:

Firstly, when my daughter was 13 there were no beds available in 4H so she was sent to BAU. BAU is a secure facility (so young people are locked in for their own safety) My daughter has no issue with drugs or alcohol, and her mental illness is a direct result from trauma. She is amazingly strong and resilient but has found great difficulty in coping with her distress at times. Being in BAU meant that my daughter was in secure care with males and females up to the age of 18 with serious psychological issues, as well as drug and alcohol issues. It is a terrifying experience, and my daughter was only exposed to this because there were no beds in 4H, which would have been an appropriate facility for her. During this time she saw many young people experiencing psychosis and saw a girl try to kill herself.

Secondly, on another occasion my daughter was sent home from 4H after clearly expressing that she didn’t feel safe and in control of her mental health. She asked that they allow her to stay but the doctor insisted she go home. There was no bed available. My daughter came home and shortly after took an overdose. We nearly lost her as a direct result of her being sent home.

I have had other young people share similar stories. A friend of our family lost their daughter after she was released from hospital, after clearly stating she was not safe to leave – the young girl left hospital, walked out and committed suicide by walking in front of a train.

Another young person has told me that she has friends who have been turned away from the hospitals, although they are in dire need, and others who have spent up to a week sleeping in the emergency department because there are no beds available (while I know personally of people who have not been admitted in times of need I don’t know anyone who has slept in ED for extended periods – I only have reported evidence of this).

Here are three other stories as told by parents

My brave little man Joshua fought Stage IV Neuroblastoma like a little warrior for two long and agonising years. During our time at PMH, Josh was waiting in outpatients, sharing rooms and being infected with other children’s bugs and moved around due to lack of space. During a mega dose chemotherapy and stem cell rescue Josh got too sick to open his eyes or speak to me. My Josh has since died.

My Julia was sent home from emergency 6 times after an undiagnosed stroke due to lack of availability for an MRI. The subsequent strokes stole her ability to walk and talk, and very nearly took her life as well.

Having spent 3 years as Aid Worker in the Romania Orphanages I find unbelievable that this is happening in Perth.

From A

I am a nurse who currently works at PMH and regularly experiences the vented frustration of parents of paediatric patients due to waiting time, theatre delays, etc. My ward should have been renovated just prior to the approval of the new Perth Children’s Hospital being given; but instead has had only minimal, cosmetic improvements made since the decision to build the new hospital came about. Let us not have missed out in vain, please!!

Our ward is amongst the busiest in the hospital and we regularly have to discharge our patients in a hurried manner, to quickly accommodate the next. This is mostly done flawlessly, however it puts an enormous amount of pressure on the amazing nursing staff – who are at the forefront of patient care and as previously mentioned, are often on the receiving end of parent and patient frustration as a result of the bed numbers available to the children of Perth currently.

It would be such a wasted opportunity to continue caring for Perth’s sick and injured kids in this fashion, (despite the aesthetically pleasing value of a new facility) when we do actually move.

As much as it is suggested that other floors may be added when the State Government’s budget allows, the inconvenience for all hospital staff involved, as well as the disruption to patient care during such an extension would be enormous!

Perth’s population is growing at a staggering rate and paediatric hospital admissions have increased accordingly.

It is utterly beyond comprehension how only an extra 27 beds are meant to accommodate such demand for treatment amongst the children of Western Australia.

You can read more stories here from parents fighting for better quality care for their children. Please brace yourself before reading these stories of young children dying in a state that’s doing pretty well. So well, that you can take money away from the services to treat them. This is Western Australia’s shame. It is your shame. I’m sure you’ll feel the same sadness in your heart when you read those stories as I did.

It is damning for you that people should take their plea to the internet over such an important issue and one that you appear to have ignored. How can you ignore sick, dying children in your own state? Change.org has also taken to the internet, petitioning you for 2 new floors and 100 more beds for the new WA Children’s Hospital. Here is what they say:

With the aging Princess Margaret Hospital already at capacity WA needs a new children’s hospital to serve our growing state.

But the Barnett Government is only delivering 27 new beds. Doctors and parents all agree that the new hospital needs 2 new floors and 100 more beds to serve our growing State.

Send Colin Barnett a message; our growing state needs a children’s hospital where doctors can properly treat our sick children now and in the future.

What’s the use of building a brand new children’s hospital without enough beds?

Let’s future proof our new Perth Children’s Hospital by adding two new floors.

Please listen to this. Please do something about it. Australia is watching.

And in the meantime … children are suffering. Mr Barnett, you have to power to do something.

Yours sincerely,

Michael Taylor

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