An open letter to Gervase Chaney

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Bede’s like… “really?! you fools still carrying on like this?”

To Gervase Chaney (Chairman of the Paediatric Medicine Clinical Care Unit at Princess Margaret Hospital for Children),

It was very interesting meeting you in our impromptu meeting yesterday during which time you informed us that the hospital would not be offering the Hospital In The Home (HITH) service to our young and precious son Bede. A decision which for the moment, as we told you, has a great affect on my husbands employment, my older son’s general well being and Bede’s enjoyment of whatever life he has left. I know certainly it has a great affect on my own well being and enjoyment of my son’s life.

I think most interesting, given our family’s history within this hospital, not least of which was Bede wasting away on 8A, becoming increasingly emaciated and distressed while the scans we were transferred to PMH for were denied to us because “his brain is fine” despite our constant advocating to have his brain checked while ultimately his cancer was growing and spreading throughout his body, most interesting is that the first time we have met you is in denying services to Bede that greatly effect his quality of life because you don’t like the way we have handled ourselves. Let us let that sink in for a minute …. you don’t like the way we have handled ourselves.

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This is a photo of Bede the day our private hospital transferred us to PMH for a brain scan.

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This is Bede, still weeks away from your staff agreeing to scan. The photos that came weeks after this are too graphic to publish. 
In hindsight the only thing I didn’t do during this time as I repeatedly advocated for Bede was raise my voice.

In fact we both know the context here is extensive. Lets consider it.

In denying the HITH service to our son you said that staff are intimidated of me because in the past I have raised my voice while advocating for him. Not that I have ever threatened any one, not that any one would ever suggest that I have been physically aggressive, not that I’m a nasty person, not that I have personally attacked or pose any threat to your staff, not that your decision is based on any documented complaints or incidences just that I have raised my voice while advocating for him. In fact it is acknowledged that it is some kind of “perceived intimidation” rather than any actual intimidation having occurred.You told me that you would within 24 hours provide me with details of the staff’s recorded incidences for the time period on which you are making your decision. Considering you have not done so I assume as you suspected none exist and there are no solid grounds for you denying this service to Bede. Sorry, I should say no solid ground other than that before Bede’s diagnosis I was a law student and my father who I do not have a close relationship was once upon a time lawyer and as your staff have said we apparently work in a fictional lawfirm no doubt spending our time plotting against PMH. This contrivance is so far beyond me and even if I were still a student that is no reason to deny services to Bede.

I want to look at the context in the hope of achieving for you some balance.
Let me be clear and honest and accountable. I have indeed raised my voice. I have raised it and I have said “this is not acceptable for my son”. It is a decision our family has been forced to make too many times. As one or two parents among a ward full of staff who are supported on multiple levels but do not listen to the sometimes hours or days of quiet, polite, repeated requests I have raised my voice to be heard. Bede has no voice of his own and too often when I do not raise my voice my own is ignored.

The HITH service is now being withheld from Bede because in the past I have raised my voice and staff members find that intimidating.
Here’s the context :
These are the same staff members who ‘forgot’ to provide Bede with IV antibiotics when his brain shunt was infected despite repeated reminders from our family, despite them telling us they had been administered they simply forgot and then did not comply with hospital policy in regards to lodging an incident and said “oh well”.

Who despite me reminding them Bede needed his steroids, despite the staff reassuring us they had administered them and despite Bede being left screaming with high pitched irritation for hours the staff later remembered they actually hadn’t given Bede his medication. They then fudged the notes.

The staff who during a 48 hour period gave his four hourly morphine between anywhere from 1 to 7 hours apart because they were too busy to administer it on time, because we are not the only children in the hospital or left him vomiting and screaming in pain because they forgot his morphine all together and it was our fault for not ringing the nurse call bell more often.

The staff that left my severely immuno-suppressed, neutropenic son sitting in a dirty infectious room with a second hand oxygen mask and a container full of the last patient’s secretions while they went for their lunch break after hours of us quietly advocating for Bede to be moved to room that did not pose a risk to him.

The staff that chose not to listen yet again while Bede’s condition worstened.

The staff that left Bede screaming in inconsolable distress, which started to induce oxygen drops, because everyone was too busy to administer his prescribed relief because there were “not enough staff”. I raised my voice, begging them to find the time to help him.

I find it hard to believe that in these situations the most intimidated person in the room was your staff.

These are some of the people we did raise our voices at saying “this is not good enough”. I wish these were the only problems we have had or even that they were the worst but we both know they are not. Who we didn’t raise our voices at was the HITH staff in our home who despite us telling them more than 24 hours in advance that Bede’s medication was about to expire ordered none because it was and I quote “too expensive” and left him with compromised antibiotic coverage while he fought life threatening meningitis and yet this service is being withdrawn.

I am sure your staff are intimidated by a family who are willing to point out where they’ve got it wrong. No one likes to be wrong. That does not mean we have done anything worthy of having our son denied services.

Indeed I often find all of this very intimidating. I find it intimidating that people could be so careless with Bede’s well being.That life saving antibiotics could be forgotten or “too expensive” to order. That schedule 8 narcotics could be administered so carelessly and recklessly that times aren’t even adjusted to preserve his respiratory drive. That neutropenic children are entering infectious rooms that have not been cleaned properly.

I find it incredibly intimidating that so often Bede’s care is really and tangibly affected by your lack of staff.

Most of all I find it intimidating that we can quietly and politely advocate for anywhere between hours and days and no one listens. That our family has no choice but to raise our voices to be heard, to minimize the effects of your hospital’s short comings on our son but that takes and has taken a huge toll on us.

I find intimidating that a man like you, can sit across from a family like us in a meeting, and reject that that is the only way for us to get results. I challenge you to show us one other way that we have not explored in the past with great failure. Indeed we have done everything the hospital have asked of us and you were unable to say you would have done differently.

Yet the hospital has no perspective. No ability to self examine and see what is going wrong, what effect these problems are having on Bede, and how we could minimize it happening in the future. Even more than intimidating I find it disrespectful of Bede and I resent that rather than addressing these issues the focus is firstly on covering your own behinds and then on the times we have been pushed to raise our voices in the hope of being heard as we say “this is not good enough for Bede”. My understanding is that staff who have neglected to give Bede vital medications haven’t even been counseled on the matter.

I find it intimidating that because our family dared to stand up and say ‘No, this is not good enough’ in the only way to which you would listen Bede is now denied a service that is vital to the enjoyment of his short life. I find it very intimidating that we have to choose between advocating for the best possible outcomes for Bede and him being punished for us doing so.

Of course it is important to remember that Bede has had life prolonging treatment at PMH.  We are acutely aware of the gift of time that the staff have afforded Bede and that a lot of times the staff are amazing. There are a number of staff at the hospital that are so much more than we could have ever hoped for for Bede and we are deeply thankful however, the gift of time does not excuse the carelssensess or needless pain or stress on Bede’s body and the need to advocate remains. In fact many times our advocating comes with the quiet but firm support of staff members and indeed has been encouraged by some staff for fear of where Bede would be or what he would have to endure without it.  Mostly that support comes from staff you may not have expected support to come from, nurses we’re not at all friendly with at times imploring us, urging us to go on. Acknowledging there is no choice. Whether they dare say it to the manager that tacitly enables these problems or not these same staff are dismayed by your current decision.

When your staff compromise Bede’s care in ways that will have real and negative impacts on our son’s enjoyment of his short life we will continue to advocate for him. He is worth it. We will continue to be intimidated by the fact that your staff’s negligence has endangered his life in the past and that you use our frustration as a means to deny him hospital services but we will continue to advocate in the face of that because despite our intimidation we are still obliged to do our job even if you are not compelled to do yours.

Really you should be thanking us, I suspect you would have had a lot bigger problems on your plate than a cross but controlled mother had we not advocated.

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Bede’s had enough and so have we.

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I have never posted the negatives of our journey on this blog before.
This is not even a handful of them.
We have instead sought to focus on the positives.That enables us to enjoy Bede and we are also mindful any negativity can impact upon other families.
The main reason I have never shared this information is because I did not want  it to detract from Bede’s shine but I suppose it is testament to Bede that he shines in spite of it.
Roy and I think it is important to share now. We think it is important that Bede’s reality is acknowledged. I hope those of you that come here to find out how Bede’s soul is travelling will bear with me for this one post.
I want to say publicly this is not good enough and I wanted to invite you to say it with us.
A proper Bede update is to follow. He is splitting his time between hospital and home and he is still with us and is of course shining.

 

  • EDIT: Comments have been disabled in this post.
    I think it is very important to advocate for Bede strongly and truthfully and demonstrate that while the bureaucrats have the power of the hospital behind them Bede’s power is in the love he can generate. It is a positive power and I think that is important. We have had nearly 1000 Facebook shares in around 24 hours. Please keep sharing the Bede love.
    We are indignant and we are humbled.
    Issy

65 thoughts on “An open letter to Gervase Chaney

  1. It is a testament to Bede and to you and your family that you get past such obstacles – no shine despite such obstacles. Thank you for sharing. I am disgusted and ashamed by the health system that allows this, but touched and, comforted – yes comforted – by the pictures of your amazing boy. Strange that he comforts me but that is the wonderful paradox that is Bede and his soul shines through in these pictures. Thank you.

  2. Nothing would ever distract from Bede’s beauty Is however I am outraged that a decision has been made that can result in a negative effect on Bede’s health and well being purely because his family is advocating on his behalf, so he/she is pretty much saying you should just sit back and let these incidents happen and not pull any of the staff up, wrong on so many levels, shame on you Gervase Chaney!! Bede boy this just shows me even more how precious your light is. If there is anything I can do please let me know ❤ to you all

  3. Isabella. I hope you forward this to the federal health minister, wa’s health minister an you local members both state and federal. You are right. This is not good enough.

    And Bede continues to shine on in the face of adversity.

    Hide it under a bush? Oh no!!
    I’m gonna let it shine!

  4. I am truly sorry for your struggles to have Bede treated as humanely as he should be. I would imagine there isn’t any parent out there who has found themselves in this overwhelming situation with their precious child, who hasn’t, at some point, raised their voice in frustration.
    Your words to Gervase Chaney remind me of a line from an old song…
    “My words but a whisper, your deafness a shout!”
    Very best wishes to your whole family.
    Renae.

  5. It is an indescribable shame what Bede had and has to endure. The worst is, this happens to someone who cannot raise his own voice to be heard!
    It fills me with joy that Bede shines on despite of all the struggle. Keep on young friend. I believe in you.

  6. Hi,
    I’ve just sent through an email, I’m hoping you get the chance to read it.
    Coming from a mum who’s been in the EXACT same position, I’m hoping I can help somehow.

  7. So sorry your family is facing yet another hurdle, As per Madonna’s comment, you should be passing this on to the health minister, what you have written is not acceptable. I hope Bede gets the treatment and respect he deserves.

  8. To the politicians that have let our children’s hospital come to this, to the bureaucrats in hospital in the home who will let egos get in the way of a child’s care, pray if you ever become seriously ill that you are fortunate to have someone like Isabella and Roy advocate for you. Pray that generosity of spirit in dealing with the months of mistakes that have impacted on your care and your family are not punished.
    When only a loud angry frustrated voice is used after some of the monumental errors that have been made in Bede’s care, see that as a tribute to all the wonderful nurses and doctors who have treated him under the most appalling conditions at Princess Margaret Hospital, not as an opportunity to deny Bede time in his own home with all his family.
    As for you Bede you just keep bop bop bopping along, your Mum and Dad are there, thank God..

  9. i remember bede’s older brother asking me last time he was in why the boss of the hospital didn’t see how important it was for families to stay together, that the siblings need their families to and the rules mean they don’t get parent time and why couldn’t he see it was unfair.

  10. this is why the WA health system fails to grow. Complicated cases must flee to other states to get treatment without all the crap but it means our doctors don’t get the experience of treating these rare cases. You’d think they would want to gain as much knowledge as possible but instead they drive people away

    • Mags so interesting you say this.
      I have had a number of messages from parents who have said just that and thanking me for saying it how it is. That really surprised me actually. Even a 3B family who used to live local to us reaching out and saying they have moved interstate for now. It’s not because the doctors and nurses aren’t great but like you say people are driven away.

  11. I felt sick to my stomach reading what Bede and your family has endured. Why do we have to stamp our feet and express our sheer frustration before our kids are treated with the respect they deserve. Keep fighting and let them hear mumma roar!

  12. I find it deplorable that despite no evidentiary grounds for doing so Bede and his family have been denied services for hospital in the home. I have witnessed the wonderful rapport you have with PMH staff and without a doubt the instances in which you have advocated for Bede have been vital. In fact, I doubt anyone with ethical reasoning capability (nay, a brain!) could deny the importance of advocating for Bede in the instances you have described.

    I maintain that without yourself and Roy as Bede’s main advocates, Bede would not be where he is today, shining like no one thought possible.

    As Australian citizens we are afforded the right to a standard of care. An 11 month old infant cannot be expected to demand standard of care when it has been compromised. Yourself and Roy have done the very best in ensuring Bede’s standard of care is maintained, that for the precious time Bede has with his family, his health and well being is prioritised. For this you cannot be faulted.

    This maleficent decision is unacceptable. I call for justice Gervase Chaney!

  13. This is a little boys life we are talking about here, we all need to grow up and do what is right for him. This decision is absolutely ridiculous! Another failed case of the WA Health System.

  14. I am appalled and disgusted by Bede’s lack of treatment and the pig headedness of Gervase Chaney. Anyone reading this blog, please email Kim Hames Health Minister of WA on kim.hames@mp.wa.gov.au and the customer liaison officer at PMH attention the email to Mr Gervase Chaney and also to Mr Roger Cook, shadow health minister of WA kwinana@mp.wa.gov.au Show your outrage!! Let’s help get Bede the treatment he needs and the time he deserves spent in his own surroundings with his family

  15. I can’t believe our healthcare system is in such a terrible state :(. How could you not raise your voice when you are advocating for your sick child against such a broken system?

    Wishing you strength to carry on.

  16. Thank you for your email ,and being the voice for bede and for other babies that we will never meet.
    Love you all
    Uncle Chriso

  17. It appalls and sickens me that such a decision can be made, one that affects so many innocent people. And all because they don’t ‘like the way you handle yourself’? I don’t know you or your family but I have been following your journey and I am constantly inspired by your grace, dignity and courage. You have shown yourself to be a much bigger person than Gervase Chaney could ever hope to be.
    I hope that the Health Minister is made aware of your situation. Perhaps an email from people following this blog would be a start?
    Thinking of you all.

  18. This is utterly disgraceful. I feel so much for this family, who I have never even met, the health minister should be ashamed this is happening to out children in our hospitals. Shame on you gervase-chaney😡 my thoughts are with you Bede and family❤️

  19. Isabelle – Bede Is shining and would be SO proud of you being his voice and advocating for him !
    Your story is devastating, the treatment you have received from gervase Chaney is disgusting !!!
    Gervase – This is obviously a personal attack rather than you making a decision based on bede a patient at YOUR hospital . SHAME on you ! Have some empathy, imagine this was YOUR son or daughter ? What would you do ! Sit back and watch and not say anything when your baby was being neglected because of incompetent staff ? Surely not !! Take the time to investigate this neglect by your staff and stop making decisions without having all the facts . You should be ashamed of yourself !

    Isabelle I hope you have escalated this to the highest possible person .. Big hugs to you and good on you for being bedes voice and making sure you’re heard, you’re just doing what any parent would do if they witnessed the above neglect from hospital staff ! Xxoo

    Keeping shining baby boy !

  20. I am so sad to hear the treatment you have received by some staff at our wonderful PMH which is supposed to be a model childrens hospital around Australia!! I cannot and will not understand how this man could deny such a beautiful boy the best of life. I wonder have you thought of Silver Chain I am wondering if they can help you please if you haven’t enquired do so. I do wish you the absolute best xxx

  21. You are an amazing family that will always look at all the positives in life. With beautiful Bede facing so many obstacles you need the only people that can help him, the hospital to be giving their all. If they are not giving 100% then you have every right to tell them and not become just a number in their day. Sending all our support. xx

  22. I’ve never met you and I don’t really know what the service is that they are denying, but I am scared that one day I may be left to fight for a family member in a hospital where staff act without compassion. Good on you for fighting all along and continuing to fight now. I hope that you get everything that you need to make Bede’s life everything that he deserves. Shame on Gervase Chaney!

  23. Anger and dismay overwhelm me at this time but also of hope, Bede has been subjected to such horrors and has pulled through as have you, Roy and Gus. My prayers and healing for you will be eternal and I will also send healing light to all those who have done wrong, so that they see truth, love and the reasons they chose to become doctors and nurses.

    Angel blessing

    Constance

  24. I felt sick reading this. It is horrifying that Bede has had to suffer needlessly because no one would give him the medication on time. Keep on shining Bede and I hope you get the home care because you and your wonderful family need it.

  25. I am appalled, shocked and saddened at the decision to deny Bede at home hospital care. Where is the duty of care to look after this very sick little boy and support his family? Bede needs should come first before anything else. If parents can’t speak up for their sick baby who will! Of course you have raised your voice, who wouldn’t under the same circumstances, you are fighting for your child’s life. Issy, you are a tower of strength and show grace, love and positivity during the most awful time of your life. We are behind you 100% and hope someone in the hospital hierarchy sees sense and does their job, to look after the needs of Bede.

    Love and prayers xxxxx

  26. Gervase – why does Bede has to pay the price for his mum raising her voice?
    Or will you now change the hospital policy to only admit patients whose family members are mute , or have lost their voice? Cause God forbid they might make a sound?
    Perhaps it would be wise of you to review the actual facts again!
    Bede is a patient at YOUR hospital. You should be ashamed of yourself ! GIVE HIM THE CARE HE NEEDS, if you can not extend his time with us, at very least help it’s quality.

    Darling Bede, fight on! After a hurricane comes a rainbow

  27. This is not good enough! Isabella you are an incredible mother advocating for your son.
    I can’t believe that the hospital has been so neglectful in caring for a baby as sick as Bede and now they are preventing sonethkh that would make his little life better.

    Bede, you beautiful, incredible boy. Keep fighting. We have your back and we will support your parents fighting for your rights !

    xx Team Bede xx

    With so much love,
    Sarah, Brad and Knox

  28. I’m so sorry for what u have gone through. It’s hard to believe the neglect poor Bede has had to endure during his time there. I’m disgusted!! He deserves so much more. No one can blame u for being frustrated. We support u & the family more than words can express. Hang in there & keep fighting!! Christine & family xo

  29. Just keep advocating for your son, focus on the positive don’t forget the effects off the negative. Take time and give time to your son and to yourselfs. I hope everything works out for the best. And my hope goes out to Bede that his life is a good life how long it may be.

  30. This is entirely unfair. Bede is doing everything he can to live and someone would be cruel enough to deny him the chance to spend time at home with his family. Stunned doesn’t even come close to the horror of knowing someone could do something to help Bede but won’t.

  31. Poor show from the health department here. No living thing deserves to go through these atrocities in life. I challenge anyone to not become upset or “raise their voice” when advocating for someone they love who can’t. My previous job was to advocate for those with mental health issues. If I had not stood up for them by causing a stink nothing would get done. Needs be. Don’t judge.

  32. I find it shocking that you are having to go through this as well as dealing with a gravely ill little boy. You should be enjoying your time together in peace, not having to fight so that Bede gets the care he deserves. He’s a lucky boy having such a determined advocate.

  33. It absolutely sickens me that this family has to go through this, on top of everything else that comes with having a child who requires such a high level of medical care. Shame on the people that have the power to ease some of the strain yet are too caught up in jeuvenille stubborn actions. You advocate for your child, when it has been absolutely nessecary. Why you are being reprimanded for this, why BEDE is being reprimanded for this is beyond comprehension and needs to be rectified immediately.

    Bede and and rest of the Darch family have touched hearts across the country, they have love and warmth coming at them from all over Australia and you better believe the very same people showering them with love can make as much noise in outrage at the actions of your hospital. This won’t go unnoticed.

    So much love Bede, darling. You mean so much more than this petty power struggle. I can only hope you get the care you need soon. It’s a sad day where this even needs to be said.

    Xxx

  34. Well said! We know the health system isn’t perfect, but to punish an innocent baby by denying care that will greatly enhance his and his family’s quality of life is horrible. I’m so sorry to hear you have experienced this, Bede deserves better!

  35. I am utterly disgusted in the way the hospital have handled themselves and intimidated and bullied you. Disgraceful! I have shared this on my own facebook to raise awareness of this.

    As always.. shine on little Bede. You are always in my heart. Xx

  36. So sad to see what the health system has got to this where they are denying such important services. There are just no words. This issue needs to be acknowledge and resolved not only for bede and his family but other families and children that are put in this situation that may not have such a strong voice as Bede’s family. Everyone has your back and will support you all the way until bede receives the support he is in titled to. Sending love xx

  37. As a mother and grandmother, I can only imagine the pain and suffering you have all endured.what parent wouldn’t raise their voice if their child was sick? The stress and pain knowing that your child’s life is not in your hands.knowing you have no control over the outcome.any mother would fight tooth and nail for the rights and life of their child. I send my love to you all and hope your child gets the care he so desperately needs.may your God,higher power or what ever your faith might be.enable you to find the strength to continue to fight for your sons well being.regardless of the ineptitude of those supposedly caring for your most beautiful child.x

  38. Simply unacceptable. I’m so sorry you have been subjected to such treatment at the hands of medical ‘professionals’. I think you have handled yourselves always with strength and integrity. Sending love and light to Bede x

  39. That is actually so heartbreaking to read iz! I honestly don’t understand how some people can sleep at night!! Of course you would raise your voice anyone would nobody has ever won a battle whispering oh my goodness, toughen up and take a leaf out of bedes book! I love you so much and sending my love to all of you always!!! Xoxoxoxoxoxoxoxoxoxoxoxoxo

  40. Passion: A Deep overwhelming emotion

    Did little Bede’s Mum raise her voice or did she speak with so much passion through the love, care and affection for her dying baby, in making sure he receives exactly what he deserves.

    Give me a minute to think about how Mr Chaney and some of the PMH staff have handled themselves. Let me recall the following parts of your open letter to Gervase Chaney:

    “becoming increasingly emaciated and distressed while the scans we were transferred to PMH for, were denied to us BECAUSE “his brain is fine” despite our constant advocating to have his brain checked”.

    So as I see it, there was the first wrong DENIAL. (I bet you didn’t meet Mr Chaney on that occasion).
    Skipping through all the other wrongly handled situations which caused much intimidation to Bede’s Mum & Dad we get to the last.

    “the hospital would NOT BE offering the Hospital In The Home (HITH) service to our young and precious son Bede”

    Here is the last wrong DENIAL.

    Mr Gervase Chaney, you need to review your decision and accept that it was totally wrong. You need to consider BEDE and nothing else; he is doing his bit, now you need to do yours!

    Mr Chaney, we all ask, HOW CAN YOU DENY HOME CARE to this precious boy?

    It’s Christmas and his family nearly lost Bede, two weeks ago, however, that little Angel decided he wanted to stay right here with his family and proved he’s capable of doing more than anyone has expected and is now in need of some loving, quiet and peaceful home time, to enable him to strengthen his little body away from the hospital in readiness of his next battle.

    Please don’t fail this precious boy and his family!

  41. This is a harrowing, and all to often told story of bureaucracy verses compassion.
    Surely compassion, and what is best for Bede and his family, must triumph over any cold, callous hospital considerations, especially when those considerations are seemingly based on over-reactions to a mother wanting and acting only to achieve the best for her child (isn’t that what every mother should do?)

    Bede is an incredibly strong person, reading this shows us all where he gets that strength from.
    My thoughts are with you all, and I can only hope you get the help and care you deserve.

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