NZORD Newsletter 2004 #10 - 7 October 2004

Hello everyone,

In this issue:
1 - Meningococcal B Immunisation Programme strongly supported by families.
2 - Whooping cough now epidemic - parents advised to immunise.
3 - Dental care of those with complex and chronic conditions.
4 - Regulation of human tissue and tissue-based therapies.
5 - Consultation on mental health information strategy.
6 - New Health Research Council portfolio for disability research.
7 - Reference group consultation for Office for Disability Issues.
8 - Reminder - Draft Guidelines on PGD.
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1 - Meningococcal B Immunisation Programme strongly supported by families.
Rapid progress in this immunisation campaign has seen the 100,000 milestone passed and over 27,000 receiving the second jab, with good responses by all communities. Click here for more news from the Ministry’s Meningococcal team.

2 - Whooping cough now epidemic - parents advised to immunise.
The Ministry of Health has alerted families to a rising epidemic of whooping cough and is urging parents to ensure their children are immunised. Cyclical epidemics of this do occur and young children are at particular risk. NZORD especially encourages those whose children have rare and complex conditions to discuss immunisation with their doctor. Click here for the Ministry’s alert on this topic.

3 - Dental care of those with complex and chronic conditions.
District Health Boards are currently reviewing the provision of school dental services. Click here for more information [Link no longer active] from the Ministry. Did you know that dental services are free to pre-schoolers? And do you share NZORD’s concerns about adequate treatment of dental problems for those with complex conditions and significant disabilities? What we hear leaves us worried that access to services is not as good as it should be, and that particular problems exist regarding treatments where general anaesthetic is required. Please email us with a summary of experiences for your condition.

4 - Regulation of human tissue and tissue-based therapies.
Extensive consultation by the Ministry of Health has identified a wide range of public attitudes and topics to be addressed. The Ministry has produced a summary of submissions received and the full document, and links to other background material, can be found by clicking here. The next step will be drafting of legislation on this topic and an opportunity to comment on that to the select committee.

5 - Consultation on mental health information strategy.
And another consultation document designed to improve the availability and quality of information in the mental health system. Click here for the introduction and links to the full discussion document.

6 - New Health Research Council portfolio for disability research.
The Health Research Council recently reviewed it criteria for research on disability and NZORD made a written submission and an oral presentation to the Council’s Research Advisory Committee. We argued for a wider perspective on disability that includes prevention, early diagnosis, interventions and treatments, and rehabilitation, as well as the very important aspect of the reality of the lives of disabled people in our society. We were concerned that existing criteria seems narrowly focussed on the latter topic. We are pleased to note the HRC has drafted a new portfolio for a wide scan of Injury, Impairment, Rehabilitation and Disability issues. The new document makes it clear that a comprehensive approach to disability research would be considered under this new portfolio, or other existing portfolios. Click here to read our submission, and also go to this link for the text of the new policy on the HRC’s website.

7 - Reference group consultation for Office for Disability Issues.
The Office for Disability Issues proposes to set up a group to give regular advice and feedback on implementation of the NZ Disability Strategy. You can find the consultation document by clicking here. Responses are due by 29 October.

8 - Reminder - Draft Guidelines on PGD.
This is one of the most significant steps for many years in the control of severe disease and disability in newborn babies. The advisory committee wishes to get feedback on these and will be receiving submissions up to Friday 12 November. Click here for details [now closed and finalised. See the website of the Ethics Committee on Assisted Reproductive Technology] of the report to the Minister, the draft guidelines and submission process, on the NECAHR website. Click here for more comment from NZORD……….

Regards, John

John Forman
Executive Director