PMH – Important Questions Parents Are Asking About The New Pain Service

It’s five months since the announcement that PMH would be funded to establish a Pain Service.

I’ve been waiting to hear news about when the service is likely to commence.

It’s hard to be patient when you know that the absence of this clinic represents real suffering for a very vulnerable group.

It’s not just the kids, it’s also parents that I think about.

I’ve walked in your shoes, I’ve stood in those hallways.  I remember thinking – “This can’t be it.  There’s got to be some more help here.”

It took me a very long time to finally accept that, no, the resources really weren’t there.

This incredible hospital with it’s hardworking dedicated staff just did not have the funding to have it’s own Pain Service.

It’s still feels weird to write that.

But that’s behind us now, or is it?  Today there still is no dedicated Pain Service at PMH.

No one seems to know exactly when it might happen.

I’m not ok with that.  

A lot of parents are not ok with that.

So on behalf of parents of kids with chronic pain in WA, these are the questions we’d like answered.

  • Where is the PMH Pain Service planning up to?
  • When might parents expect to gain access to this service?
  • Will parents be consulted about how these services might operate?
  • How does the PMH Pain Service funding compare to the Pain Unit at Fremantle Hospital?
  • Parents want PMH to deliver WA children the same standard of pain service that adults have access to at Fremantle Hospital – what additional resources would be needed to achieve equity in this type of service delivery?
  • To quote pain specialist Professor Cousins – “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.”
  • Does planning include provision for a dedicated interdisciplinary team?
  • Will the proposed pain service be led by a specialist in children and complex pain?
  • Can people in remote areas arrange to consult with the Pain Service via Skype?
  • Children with a chronic condition miss a lot of school because of the need to attend appointments and stay home on sick days. This can also have a big impact on parents employment. Will there be any early morning, evening or week-end appointments to assist with issues of school attendance and parents ability to work?
  • Teenagers with chronic pain can become isolated, are there any plans for group sessions to bring these young people together?
  • Parents play a key role in supporting young people with chronic pain. At the moment there is no training in how they might fulfill this critical role. Is there any plan to educate and support parents to better understand what they can do to promote a good outcome for their child?

Have I missed anything?  Please let me know if there is any other questions I should be asking.