About Julia Sutton
Julia has raised a child with a chronic pain condition. Her daughter was regularly a patient at Princess Margaret Hospital. Since 2009 Julia has set up and edited a website jointpainrelief.com.au for parents of children with chronic pain in Western Australia. Julia is keen to address the gap in pain services for children and teenagers in Western Australia.
This is a speech delivered to the Board of Directors of the Health Consumer Council WA on 15 February 2012.
Julia Sutton: Thank you for the opportunity to speak with you this afternoon.
Right now I am going to tell you about three things. First I’m going to identify a gap in pain services for children and teenagers in WA. Secondly I’m going to talk about a logical set of things that will fill that gap. Lastly I’m going to ask you to make working to help solve this gap a strategic priority for this Board.
Come and stand with me as I take you back a while. My daughter has asked me to collect some take home medication at the pharmacy counter at PMH. I’m guessing a couple of you have been there before. My daughter who had just turned 16 has had spinal fusion surgery for the full length of her spine. Her surgeon opened up her back, embedded titanium rods and grafted donated bone tissue to hopefully grow back over the rods. After a few days in intensive care and then longer on the wards, I’d been told she would be in severe pain for at least six weeks. As she has several other complications we had also been warned the pain could last longer. There is no guarantee the pain will go away. The pharmacist approached me with a brown paper bag the size of a shoebox. It was full of Oxycodone and Oxynorm – these are fast and slow release medications. To give you some idea of the strength of these medications Oxycodone is approximately 1.5–2 times as potent as morphine. As the pharmacist slides the package across the counter he raises an eyebrow and nods his head. He says only one word. “Pain”. I understand I am looking at a serious level of medication, serious even for the chemist who deals with medications every day.
I turn around and walk out of the hospital with an appointment card in my pocket. In a week I will come back for a quick consult with the rostered anesthetist to review post operation medications. In terms of information about pain that’s it. Now I’ve had lots of experiences in my life but I have to tell you that walking out of that hospital was one of the loneliest and most frightening experiences I’ve felt in my life. I was utterly unprepared and I knew it. But I’ll come back to this…
Before we go any further I’d like to pause and say how grateful I am for the support we’ve received from the medical community. I want to talk about gaps in services and systems but I don’t want to imply criticism of hard working individuals. I’m here to help solve a problem not to show disrespect to anyone.
Now let’s go back to those take home medications. There was no training in how to nurse a teenager in severe pain – both the physical and psychological challenges. There was no briefing about the medications I was administering or how to counter act their side effects. No one asked how I might manage this caring role and other work and family responsibilities. No one called me to ask about what was happening in our home. And later, I would be shocked when the issues associated with dependence – or addiction, to use the common phrase – on Oxycodone became apparent.
Down the track my daughter had her surgical wound reviewed by a surgeon. No one reviewed whether we carers understood the important issues of post surgery recovery and pain management. So this taught me that even in times of severe post surgery pain there is little information or support in caring for children in pain at home. I described this experience to pain specialist Dr Stephanie Davies and she put her head in her hands and shook her head and said, “No no no.” I took this to mean that maybe things could or should be done differently.
It is not just in the home where there are gaps in the delivery of pain services. Let me give you a surprising example. At the 2010 Pain Summit in Canberra to launch the National Pain Strategy Professor Michael Cousins quoted a study published in the Medical Journal of Australia. This study reviewed the pain management for children with cancer in the last month of life at the Royal Children’s Hospital in Melbourne.
So how good is the pain service given to children in the weeks before they die? According to the study 46% of children receive inadequate pain medication during that period. Almost half. This is strange isn’t it? I’ve personally known several adults dying of cancer and their pain management was excellent. What’s going on here?
I think the problem has historical roots. I don’t believe children’s pain has been considered valid or real. It isn’t so ago long circumcision was done without pain medication. I personally experienced an example of this with my other daughter, five days old, when she was given three failed lumbar punctures over a couple of hours. After the third she was so distressed she had to be sedated. It seems fair to wonder why she wasn’t sedated before the distressing and painful procedure rather than after it.
I asked Dr Davies about how many children suffer from chronic pain from any cause. She said 20% of adults, 15% of teenagers and there is far less published research data on how many children. She guessed around 15%. Again interesting that there is no data on how many children. Why not?
So I’ve given you an example how children and their parents struggle to get adequate supervision of medication in both cancer and postoperative circumstances. Let’s go further down the chain to children with chronic pain conditions who are the poor cousins in terms of medical priority. PMH does not have a dedicated co-ordinated pain unit as do some other children’s hospitals in the world. The responsibility for this area is shared between rheumatologist Dr Kevin Murray, physician Dr Donald Payne and two other anesthetists. I’m certain these doctors would be the first to agree there is a real need for a co-ordinated pain unit led by a paediatric pain specialist.
The current lack of this unit means that if your child is diagnosed with a chronic pain condition your sole support is the short clinic appointments with a medical specialist. If your condition is undiagnosed you don’t have any assistance with case management or pain management. In fact the phrase parents say to me over and over is “we feel like we are on our own” – “we don’t know who to turn to”.
How did I come to be standing in front of you today? I decided to come here because I am one of the lucky ones. I have many layers of advantage that others might not have. I am white and middle class and professional. I am married – so my husband and I faced challenges together. My husband and I have flexible work hours and financial security. We have extended family support. We lived ten minutes from PMH. We are both tough and resourceful people. The experience of raising a child in chronic pain has put our family under intense pressure. I remember one young PMH psychologist saying with surprise, “Oh so you are still married!”.
There are predictable pressures that hit a family assisting a child in chronic pain. So why is there no support and no education for parents facing that challenge? This is important because what parents do has a big impact on outcomes for children in chronic pain. There is even evidence in psychology studies that parental style influences how a child experiences pain. We need to get this information out of academic papers and into homes where real parents can be helped to put it into practice.
My other child was identified by PMH as being “at risk” because of the pressure on the family but again no training or support was put in place to explain what could be done about that. We felt on our own. Many times we looked for support and we could not find it. If we were doing it so tough what about other parents who live in rural or remote areas or live on one income. What about parents without flexible employment or family support? What about the fly in fly out families or the unemployed? I am standing in front of you because I am seriously worried about how other families are coping. My daughter is an adult now but I don’t want to walk away until this gap in services for WA children is fixed.
Besides a Pain Unit at PMH what other sort of services do families need?
They need age appropriate subsidized group hydrotherapy, which can
- help maintain mobility and
- reduce disability
- reduce levels of pain
- reduce feelings of isolation
I’d like to see subsidized hydro running parallel to parent training and support groups because it is unaffordable to many families.
There’s a need for early childhood support and training. We need playgroups for children with chronic pain conditions that run parallel to parent training and support.
Teenagers in chronic pain need better mental health services. We need
counselling and support groups specifically for teenagers with chronic pain.
We also need a residential respite facility for those teenagers. I would like to address the issue of teenagers with chronic pain who are often home alone. During pain flare-ups they need access to hydrotherapy and group counselling and educational support. There are risks in having struggling depressed teenagers in pain at home alone with large quantities of painkillers. Many parents have no other option.
We need pain management training delivered in video format. I want to see
support for the conversion of Dr Stephanie Davies STEPS pain management programme to a more accessible video format.
We need web-based pain resources. Imagine if in the future web-based diagnostic tools could be used in emergency departments so that a higher level of expertise in pain diagnosis and treatment is more broadly available.
Finally, there is a great need for research in the field of chronic pain and its origin in childhood. It can help guide services for children, plus provide potential for enormous impact in the adult population as well.
Now let’s go back to the story I started with here. Let’s remember that you can leave hospital in this city with a large box of dangerous medication and no training. Consider that studies in the US show that more people die from accidental overdose of opioids than heroin and cocaine combined. (1)
You can be sent home to a demanding nursing situation with no training or support. Consider that a 2011 study of twenty families given prescribed opioids by emergency department showed that none of those families stored the medications safely and only one family disposed of them properly. (2)
Let’s also remember that you can have medication reviewed by someone who has never previously met you or your child. There is no pain unit at PMH with its own dedicated pediatric pain specialist.
Professor Cousins argues that “to improve the current situation children’s hospitals and palliative care services need administratively co-ordinated dedicated interdisciplinary teams of health professionals, working together to allow equality of access to specialist expertise which includes palliative medicine and pain medicine specialists.”
I agree with Professor Cousins – “the costs of pain in children is very high – physical, psychological and financial. The impacts affect self-esteem, physical fitness and quality of life – this influences education and vocational potential. 30-45% of children with chronic pain will have this pain as adults. Childhood pain also has a major impact on families and parental employment.” (3)
Think about it, if you teach an adolescent better pain management strategies – they have the benefit of that knowledge and skill for their entire life-time, significantly increasing their chances of contributing in all ways to their community, including the workforce.
So Professor Cousins argues for better pain services. Other states already have dedicated paediatric pain units. The WA State Wide Pain Services forum listed both paediatric and women’s health as the biggest gaps in funded resources for pain services in WA in 2009 – and that is still the case.
I’ve given my personal evidence about the lack of resources here.
This board has the power to raise this important issue with people who decide resource priorities. Please lobby for a desperately needed and much overdue interdisciplinary pain unit at PMH. Let that unit by headed up by a paediatric pain specialist. Please support the innovative projects Dr Davies is working on. Please help co-ordinate integrated and practical support services for families supporting a child in chronic pain. Please help me to transform the experience of parents walking away from the pharmacy counter at PMH with their take-home meds. Let’s transform the experience of children in oncology.
Today I’ve told you about three things. I’ve identified a gap in pain services for children and teenagers in WA. I’ve outlined what we can do to fill that gap. Now I’m asking the Board to make the improvement of pain services your number one priority over the next two years.
Thank you for your attention. Would anyone like to ask any questions?
1. Live Science
2. Journal of Emergency Nursing
3. Proffessor Cousins reference
Too many children suffering unecessary pain (Thursday March 4, 2010)