59,864 NSW Citizens but does the Media Care?

Just a short post (I think).
The amazing work of Yvonne McMaster and her helpers / supporters resulted in 59,864 signatures collected  on a petition calling for more resourcing for Palliative Care in this state (see previous post).
The Hansard record is here

This was a record for a petition presented to the NSW Parliament, a matter noted by a number of speakers.
How did the main media in NSW respond?
No mention on the NSW ABC News site.
No mention in the Sydney Morning Herald (once called the journal of record but now sadly very much not so).
Little other pick up.  Instead we were treated to stories about Bert Newton's pending cardiac procedure and news of a clinical trial underway to look at the use of cannabis for pain management. At least the second one was palliative in effect.

The media struggles with  reporting on Palliative Care in general, that is understood.  However, to ignore a record petition, to not ask what is wrong that all these people are concerned, to not put the government's response under the microscope.  Sad, and possibly a failure.

The Palliative Care community also struggles with the media, and the politics of health funding.  Despite the bad deaths and poor end of life practices we encounter every week we do not play sensationalist shock / horror headlines.  The reason is that Palliative Care clinicians, perhaps more than any others, recognise that there are people in deep grief who do not deserve to be imposed on, despite what we might think about the sub-optimal care their loved one received.  It is the personal nature of the dying context that restricts us.

Thank you Yvonne, and thank you to whichever of our politicians are listening.
There is still so much to do, so much lost time to make up.

NSW Parliament Debate November 2012

Today the NSW Parliament will debate Palliative Care provision in response to a petition that, at the time of writing, had collected more than 58,000 signatures across the state.  Not quick clicks on an advocacy website but real signatures from concerned citizens.  The Minister for Health is expected to respond positively and speak to the newly released NSW Government plan to increase access to palliative care 2012-2016 and also point to the extra $35million that has been promised over four years.  On the face of it, this must be evidence of a government listening to its people and responding.  Surely the Palliative Care Community will be pleased with this.

The exact use of this “new” money is yet to be seen, with the closing date for proposals being early January.  However, the language around this funding has centred on filling gaps in community palliative care provision, and especially initiatives that will support home deaths.  Like several other Health initiatives of recent years, hospital avoidance is a key theme.  Again, this cannot be lightly dismissed as there are certainly inadequate resources committed to this purpose and the community will rightly applaud such an initiative. 

Of course, this sets up problems for clinicians, peak bodies and advocates who may wish to discuss uncertainties and even deficiencies in the government’s response, for here is a health minister who is more engaged with this issue than many of her predecessors.  Yet, at the risk of seeming ungrateful, words of caution and uncertainty must be spoken for there is a deep concern that the Government’s response is at best incomplete, and at worst a risk to Palliative Care itself.

NSW Specialist Palliative Care services have been historically underfunded .  Specialist clinician numbers are well below national averages, and Specialist Palliative Medicine physicians are very rare outside of the Newcastle to Wollongong corridor.  The Australian Institute of Health andWelfare reports that NSW has the lowest ratio of specialist palliative care physicians per 100,000 population of the mainland states and has reduced the number of hospice (palliative) care unit in public acute hospitals from 47 in 2008/9 to 40 in 2009/10.  NSW has a lower ratio of palliative care nurses per 100,000 population than many other jurisdictions.  These figures indicate that in 2009/10 NSW would have needed an additional 22 FTE palliative care physicians and more than 200 additional palliative care nurses to be on an average national playing field , and that is before the particular demographic and health infrastructural challenges in NSW are considered.  The demand for Specialist Palliative Care input for persons with non-cancer end stage conditions is estimated to be up to 40% of all referrals, yet the cancer based funding model for Palliative Care services has not been amended to enable this to be addressed.  A consequence of “advances” in treatment options for cancer and other conditions has also seen an increase the complexity of end of life symptom management for many, and again, palliative care funding models have not adequately responded to this.

In addition to this, more than 40 palliative care positions are scheduled to be lost across the state on July 1^st 2013 when one particular stream of sub-acute funding under the National Partnerships Agreement between the Commonwealth and NSW runs out.  The NSW Ministry for Heath has made clear that the new “$35 million” will not be used to address this gap.  Further, new Cancer / Radiotherapy centres are opening up in regional NSW and there are reports of Treasury declining to fund additional Palliative Care staff to provide service within and to these Commonwealth / State funded initiatives.

It is against this past and present reality that this petition has been achieved, and the concern for many is that the government is overplaying the death at home factor, while not addressing the role Specialist Palliative Care also plays across the NSW public hospital system (where more than 55% of NSW citizens currently die) nor addressing the funding shortfalls for those services in relation to the work they already seek to do in community settings.

By not showing how these needs will be met the government runs the risk of short circuiting its own initiative, as it is a requirement that these new community proposals will have formal links with Specialist Palliative Care Services, the very services that are struggling to meet existing demand and to provide a just level of equitable access to their care, support and expertise.  To attempt to leverage off a crumbling fulcrum is to risk clinical harm and/or service collapse. 

So, while the Palliative Care community cautiously welcomes the intent of this new funding as it waits to see the reality of it, we must also ask when the existing Palliative Care Services and clinicians will be resourced to address the unmet and upward demand that the petitioners have responded to.