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October 21, 2010

Genomics News
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» Equity of access to genetic services – international perspectives

The 23rd annual conference of the International Society of Nurses in Genetics is being held in Dallas, Texas this week.  I’m attending to present a paper on our Fit for Practice in the Genetics/Genomics Era work and present a poster about the British Heart Foundation evaluation of the Cardiac Genetics Nurses initiative. 

I’ve also chaired (and presented) a plenary panel of international speakers, each considering the issues around equity of access to genetics services in their country/region.  Countries represented included Brazil, Israel, Japan and the U.S. Visiting Professor Heather Skirton provided a European perspective.  This was a really stimulating session that generated a good discussion.  In my overview, I set out the factors that influence access to health services, and commented on the disparities both within and between countries.  There are clearly issues common to all countries, but it was interesting to hear about the more specific issues.  In Brazil for example, there is a very uneven distribution of health services by location, with marked inequity in access to public services, and concern about ethical practice in relation to commercial interests. In Israel, with a small population of just 7 million, inequities exist in relation to religion, location and socioeconomic status.  Japan is challenged by its demographics with an ageing population and low birth-rate and a scarcity of health professionals. The sheer size of the USA brings its problems too, whilst across Europe there is huge variation in access to services across just about every parameter!

June 19, 2009

Genomics News
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» Heart to Heart report launched: more specialist pleading?

NHS Improvement hosted the launch of the PHG Foundation’s report on Inherited Cardiovascular Conditions Services. Held on Monday 15th June in London, this attracted a large audience of cardiac network stakeholders and members of the cardiac genetics communities. The report itself is comprehensive and thorough and makes a series of sound recommendations about the establishment and effective running of ICC services.

The launch included an excellent programme of presentations, led by Roger Boyle (National Director for Heart Disease and Stroke). In outlining the report, project lead Dr Hilary Burton reminded the audience that the (conservatively) estimated UK prevalence for inherited cardiac conditions including familial hypercholesterolaemia (FH), is between 306,629-380,258. It is thought that about 75-90% of at risk individuals for FH are unaware of their risk.

One interesting session was an outline of the quality markers of a good ICC service, where we heard the views from a range of experts, including from paediatrics, an ICC Nurse and a patient representative. There was clearly common ground here – coordination, communication and continuity, as well as multidisciplinary and interprofessional working, and family-centred evidence-based care.

I came away from the day (rather exhausted after a 4.15am start!) with the feeling that there is consensus on the need for ICC services to serve the needs of the UK population – and to avert the sudden deaths that can result when risk goes undetected, as we heard about in some of the presentations . One of the challenges is, as ever, raising awareness, amongst the general public, but also amongst health professionals many of whom still take the view that genetics is ‘just another case of specialist pleading’.