2013 was a year of a great amount of work behind the scenes and small steps forward on the ground for palliative care in NSW.
2013 was the first year of the new Palliative Care Network within the ACI (Agency for Clinical Innovation). Having this network, is itself an achievement. The Network Management and Executive have worked painstakingly on a new Model of Care for Palliative Care, as the ACI has its own way to do these things and goes through a series of careful, methodical steps.
This year the process involved 955 consultations all over NSW with patients, families and carers, palliative care workers, Local Health Districts (LHDs), GPs, residential aged care staff, medical specialists, hospital staff, community nurses, aboriginal health workers. This “Diagnostic Phase” is to establish where the gaps are and how the whole system works.
Now we are almost at the point of being able to start planning the Model of Care, and following that, the implementation, which is what we are all eagerly waiting for – the start of palliative care services being delivered to everyone who needs them in NSW when and where they are needed.
Meanwhile, we have to make sure that the government is prepared to fund the new system. The first action was the preparation of the Business Case for Palliative Care, drawn up by Dr Tony Ireland, palliative specialist physician and data analyst. Tony, Peter Cleasby and I took this to Mike Baird on 20 February 2013. It was well received – Mike ‘gets’ pall care.
With this in mind though, it was disappointing when the 2013 State Budget only had an additional $3M for 30 additional palliative care nurses, divided up between the 15 LHDs, equating roughly to 2 nurses each. As always, each LHD has been slow in implementing this positive advance.
On September 12 we gathered in Parliament House to be told about how the $35M (over 4 years) for palliative care would be allocated (read the media release here), and again we met on October 30 for the PCNSW forum, “Palliative Care: Where to from here?” to give the government our feedback (read or watch a summary of this forum).
Care has already been delivered to a number of patients enabling them to die comfortably at home. The whole thing is taking a long time to roll out but will give much needed help in the last days of life. The new packages, provided by community workers or nurses, specially trained for the task, are designed to support existing specialist medical and nursing services and work as part of the Specialist Palliative Care multidisciplinary team in each LHD. It may involve these helpers being able stay the night to support carers.
On 20 September we had a segment on palliative care needs on TV – the 7.30 Report in NSW. Another programme on SBS Insight on 19 November explored issues about telling dying patients the truth. PC specialist, Richard Chye was one of the participants and what he said was much admired. Both programs have created some very favourable reactions, which has persuaded me to get palliative care into the media spotlight much more in 2014.
The Northern Sydney Branch of the Sydney Alliance has taken palliative care up as one of its issues for this year. It may be possible to persuade other branches to do likewise.
This year I have had the help of Michael and Mark, who have been diligently formatting the newsletters, helping with Facebook and other social media, as well as dreaming up and running the Living Album, a photo album showcasing the moments palliative care creates, for the Health Minister, Premier, Treasurer and general public.
And our petition now has 70,260 signatures, 10,396 of which are from 2013. This will undoubtedly continue in the new year.
Other plans for 2014 include more visits to rural LHDs promoting palliative care to the CEOs, showing them how much they can save if they properly fund palliative care, as well as other projects focused on different areas of pall care provision – Western Sydney, Northern Sydney, a hospice for Western Sydney and in-reach into aged care facilities.
Then the big project is to air all this in the media and to be utterly dogged in that. 2015 is an election year. I want to be sure that the State Government knows that palliative care is important to all the citizens of NSW.
Here’s to all the hard work done in the past year, and too to the work that still needs to be done in 2014!