Harry’s Story – A Letter from Tracie to PMH

We are currently campaigning for a new dedicated pain unit at PMH.  Here is a letter written by Harry’s Mum Tracie to PMH.

Having a child who suffers chronic pain I wanted to draw your attention to an area of PMH which I believe is lacking in services, and to the children, parents and caregivers who are in desperate need of support.

I feel very strongly about the chronic pain suffered by our children and the need for a dedicated pain unit at PMH.  I’ll try and tell you about this and not allow too much of my emotion creep in and diminish the importance of what I would like to say to you.

I should introduce you to my son Harry, invite you into his world, and ask you to form your own opinion of the need for a paediatric chronic pain specialist and dedicated pain management service at PMH. Here goes…

My son looks like he is resting comfortably, but it’s 10am and he’s 9 years old. No, he’s no resting, he has withdrawn into his own world, and his eyes are open, glassy.

His face is white, with a pale tinge of blue around his mouth and his breathing is shallow and there he lies very, very still as he tries to manage the pain he is suffering.

Try to get him up?  Wanting to comply, he struggles to get out of bed but he’s unable to stand independently.  He’s hunched over, can’t eat or drink and is unable to focus on what’s happening around him.  Worse, he starts to lose control of that pain. He hits, scratches, bites himself and others, tears his skin until it bleeds and starts sobbing uncontrollably.

This is bad enough but imagine, Harry already takes 80mg of MS Contin a day, 12.5mg up to 2 hourly for breakthrough pain and there is no pain service to call.  He will need to present at PMH ED for a fentanyl infusion but we know how that course of events will unfold so we hesitate, sometimes this may only last for 48 hours until the pain becomes controlled again….will we, won’t we?  We juggle the drugs (we have had to learn by ourselves), use alternative therapies but we aren’t winning.  With tears in our eyes we make the call, please expect Harry in approximately 1 hour, they know he is coming.

PMH should be his sanctuary; there are qualified people there who can help him, the necessary drugs, ability to control the pain and give Harry some relief.  However, at hospital he can’t access the pain team without first having a referral made by a medical team, which needs to be requested by the doctor, which needs Harry to have an initial assessment by a nurse who can’t get near to him because by this time he is thrashing around wildly, sobbing and tearing himself and anyone close by to pieces.

The process seems to take such a long time, perhaps because Harry doesn’t have a diagnosis.  Who is he being admitted under? Is the pain related to a new specific cause?  Please, please ask the pain team to come; even then we appreciate their dilemma.

It gets worse; the pain is one of his triggers for seizure. He’s treated immediately and recovers but it happens again, his eyes show the fear as he desperately tries to cling on to some form of contact with us.   This time he can’t stop fitting, he loses consciousness, and he goes into status.

Several hours later and after a myriad of drugs it is decided that Harry should be intubated.  We’ve been here before, and I’m relieved he will finally be asleep and comfortable but we also know that this isn’t the end…… 48 hours later on waking after intubation, Harry can’t move, he has tears in his eyes and makes little whimpering sounds.  His MS Contin (80mg a day) was stopped two days earlier and we plead with intensive care staff to contact the pain team…

I need to stop a moment, there is something I didn’t tell you at the beginning, it shouldn’t make a difference but it does. Harry can’t talk, he can’t verbally tell us the pain he is suffering or the fear he is feeling worse, he can’t be reassured that “it will be ok” – Perhaps you could re-read the above knowing Harry doesn’t have the ability to tell us what he’s experiencing.

I could go on with stories about incidents of suffering that would make you cringe with horror and bring tears to your eyes.  This isn’t however intended as a criticism of the care given rather, a reflection of the current systems and lack of services in place to prevent children suffering unnecessarily.

I understand that paediatric chronic pain is not a well-researched area and especially so in those children who can’t verbally describe what they are experiencing.  Moreover with such limited research and the very nature of the opiate treatment there are bound to be many different and conflicting opinions on how the pain is assessed and treated.

I have been very fortunate with my dealings with the pain team at PMH and found them very helpful however, they don’t specialise in chronic pain and, as purely a consulting team, (as I see it) weren’t in a position to manage Harry’s medication and care.

Ultimately, as Harry’s tolerance to opiates grew so did my ability to find a doctor who could treat him.  He had “outgrown” the service that was offered at PMH yet he was only 8 years old.

I consider myself one of the lucky ones, I am fortunate enough to have the means to explore other alternatives and eventually came in contact with David Champion from the Eastern States who supplied me with some valuable information and resource tools.

David helped me realise that what I was asking for, pain relief for my child, was not unreasonable and that there were people out there with experience in this field who would understand the difficulties we were experiencing and could help us.

I did find somebody, a great doctor with paediatric chronic pain experience who is currently in Perth.  However, Harry can’t see this doctor at PMH and therefore his care is compromised; should he need to be admitted to hospital for pain, who is he admitted under and who oversees pain management?

Moreover, perhaps a paediatric chronic pain specialist and dedicated department could help identify those children who are non-verbal thus treating and alleviating the considerable pain they go through – Harry was believed to have behavioural issues until a routine blood test enabled a diagnosis of pancreatitis to be made – It still makes me cry thinking of the pain and suffering he must have gone through.

Pain specialists might disagree but I believe paediatric chronic pain, as opposed to acute pain (even paediatric acute pain) brings a whole new range of variables to the concept of pain management.

As a civilised society, we like to think we are doing the best for our children, without a paediatric pain specialist who can pass on their knowledge to caregivers and develop individual, appropriate care plans, our children are isolated in that their pain is not always recognised or treated appropriately.

Again, I would like stress that this letter is not intended to criticise in any way the fantastic work carried out every day in PMH by its dedicated staff rather, draw to your attention an area of care that surely should be considered a priority and ask your help, as stated in CAHS’s vision statement to “improve and protect” the lives of our children who suffer chronic pain.

Thank you for taking the time to read this letter and whilst I realise there must be many areas in need of services I hope you will consider this one as a priority.

Editor’s Note: If you’d like to help us there are full details at PMH Needs A Dedicated Pain Unit – Here’s How You Can Help Make It Happen.