Thursday, October 21, 2010

Patient Power

This has been a big year for advocacy. In haematology, there are so many unfunded drugs, unfunded new technologies, services under pressure and other issues in haematology that directly impact patients.

We have written a document and circulated it widely to Ministry of Health, Cancer Control New Zealand and other relevant parties. We remain with the same theme, that we believe blood cancers are sitting well below the radar of practically everyone.

Everyone; from members of the public having low awareness, to the health agencies and DHBs who we don't think are placing enough priority on this, and to the media paying scant attention to these prevalent blood cancers.

Time for this to change.

As mentioned in my May posting, stem cell transplant facilities remain under extreme pressure. We are delighted to say that the issue is under serious consideration by the Ministry of Health and in Auckland by the DHB. The important thing here is that it be treated as a key priority and doesn’t slide to the bottom or completely off the list. It is clear new investment is needed and we will be keeping active on this.

Last weekend we held our first-ever Blood Cancer Patient Forum. The one day conference was so well attended by patients and families we are still in amazement.

We began planning for this 20 months ago when we learnt that the Australasian haematology meeting was to be held in Auckland. It was a superb opportunity to leverage the international and local expert speakers who would be coming to town.

We would have considered this a successful undertaking if 120 people had attended but with several registrations on the day there were around 220 people there. It was an ambitious undertaking with five different cancer-specific concurrent streams, advocacy and biology of blood sessions, all were well attended.

Most gratifying of all was to see that patients travelled from as far away as Christchurch to attend and from all corners of the North Island. It certainly highlights the need for this kind of meeting.

Don’t underestimate patient power.