Dear friends, members and clients,

On 8 December I wrote to the NSW Health Minister, Hon. Jillian Skinner MP, calling for an immediate, threefold increase in the funding of adult CF clinics. Severe staff shortages have been acknowledged for some years and the Clinic Directors have all made representations to their hospitals about the need for more staff because of the significant increase in the number of adults with CF. Very little, if anything, has changed.

The situation led Professor Peter Middleton at Westmead Hospital to advise that his clinic would have to stop taking new referrals. That was the catalyst for my letter to the Minister. In response, Westmead Hospital has now provided temporary funding for an additional part-time nurse and the clinic can continue to take referrals until 20 February.

This is good news in the short-term but the staff levels at all three adult clinics – John Hunter, Royal Prince Alfred and Westmead Hospital, is grossly inadequate. Together they treat over 500 patients a year. For that number of patients the CF Australian Standards of Care[i] recommend they should employ 68 staff including doctors, nurses, physiotherapists, social workers, dieticians etc. Together they employ less than 10 staff.

CF complications worsen as people get older and the Standards of Care reflect the fact that adults need more support.

The CF community has changed over the years and has specific needs.

  • The vast majority of children now transition and live happy, rewarding adult lives. They have a right to expect their care will be provided by appropriately resourced adult clinics.
  • The clinics are in different Local Health Districts[ii] and the Government must ensure that everyone with CF, irrespective of their age or the clinic they attend, has access to a specialist team with sufficient core funding to meet the Standards of Care[iii].
  • CF is far too complex to be primarily managed by GPs even though the family doctor has a very important role. The care needs to continue to be centrally co-ordinated and managed by the specialist teams at the clinics.
  • Although CF is considered a ‘disability’ very few people will be eligible for support from the NDIS. It will not replace the services provided by CFNSW or the hospitals.     
  • The CF community is very small. This means we have to work much harder than larger, more common and higher profile conditions to attract funding and resources. We need your help.

From late January we will need you to contact your local Member of Parliament and the Health Minister to lobby for an increase in services. Their job is to help the people in their electorates. They need to understand what CF is and why the clinics are so important. They need to hear your story.

We all know how lucky we are to have such great clinics staffed by incredibly skilled, caring professionals. But they need our help.

I wanted you to have the facts as you may see stories about this in the media. Please don’t hesitate to contact me if you have questions, ideas or concerns. I would also like to hear from anyone who is keen to be involved and willing to talk to the media. Please phone or email me on 8732-5700 or michele@cfnsw.org.au

Please sign and share this petition with your networks.

 

Yours sincerely,
Michele Adair
CEO NSW



[i] Thoracic Society of Australia and New Zealand (2008). The Standards of Care were developed and endorsed by the CF Centre Directors from across Australia. They provide guidelines on all aspects of clinical care from diagnosis, to treatment, transplantation, and community and outreach services. 

[ii] The NSW State Government funds Local Health Districts (LHD) and then they fund the individual hospitals in their Districts according to local needs and priorities. The number of hospitals in each District varies from four in the Sydney LHD, to five in Western Sydney LHD and 29 in the Hunter New England LHD. The small number of people with CF makes it very difficult for the clinics to attract funding.

[iii] There are two relatively new clinics at Canberra Hospital. They are funded by the ACT Government and must also be expected to meet the Standards of Care. They should also be able to provide services to people from southern NSW as this is a common occurrence with other conditions.