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.

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

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.

—————————————————————————————————————————————————————————————

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