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13 May 2007 @ 03:54 pm
Sick Waiting  
Cystic Fibrosis Association of Ireland is looking for decent services for people with Cystic Fibrosis. Please ask your candidates* what they plan do to.

Ireland has one of the highest incidences of CF in the world. The life expectancy in the Republic is about 10 years lower than in the north (early 20s rather than early 30s). As we'd have similar populations, the difference is likely due to the quality of care.
People with CF are very susceptible to lung infections. No one should have to wait for days on a trolley in A&E, but in particular, people with CF should not be exposed to the risk of infection.

The association is looking for eight actions:

  • The recommendations of the HSE CF Working Group should be released and implemented without any further delay.

  • An adult centre for people with CF in Dublin at St Vincent’s University Hospital must be built immediately.
  • A Centre of Excellence for CF patients must be provided at Cork University Hospital.
  • The construction of a new CF unit (adult and paediatric) at University Hospital Galway needs to begin by the end of this year.
  • Inpatient and outpatient facilities at the three Dublin Children’s Hospitals must be upgraded.
  • All the CF centres designated by the CF Working Group need significant development in physical and human resources

  • The process of recruiting specialist medical staff for all the major CF centres must continue. The minimum internationally recommended specialist medical staff levels need to be reached by 2008.

  • A Neonatal Screening Programme should be established following the establishment of a logical pattern of joint child/adult CF centres. Such a programme would maximise the potential benefits of screening.

For more information about the Sick Waiting campaign, see http://www.cfireland.ie/press.php/news/_press_releases/showrelease/49

Other things you can do:
Carry a donor card, and most importantly tell your next of kin. The Mater is now capable of lung transplants, but there have been none in Ireland yet, as there have been no donors.
Money donations are always welcome too: https://www.cfireland.ie/donate.php/fundraising/donate

For more information about Cystic Fibrosis, see http://en.wikipedia.org/wiki/Cystic_fibrosis

* There's a general election this month in Ireland.
lizmopuddy: Donorlizmopuddy on May 13th, 2007 05:10 pm (UTC)
All my family of age, give blood (except Niall who can't anymore because of meds) and carry donor cards.

We carry spare cards in work, remind me, I'll bring a handful to the next meet up, and more pretty purple boxes as a prize for taking one :-)
a very caring potatomollydot on May 14th, 2007 07:21 pm (UTC)
Thank you.

That'd be great. I'll nab one. I've downloaded one from the internet, but it's just two bits of paper. A proper one would be better.
Siljasilja on May 13th, 2007 06:31 pm (UTC)
I agree with you that something needs to be done, but I have two questions:
- how do you/ the people who advocate the above suggest we get lots more qualified specialists by 2008, barely half a year away?
- How will we fund the increase in services for CF patients?
a very caring potatomollydot on May 14th, 2007 08:54 pm (UTC)
- It looks like the staffing is already underway. From a little over half way down the press release:
Understaffing was one of the deficiencies identified in the Pollock report. Early in 2006, the HSE Cystic Fibrosis Working Group identified about 56 critically needed medical posts which were specifically ring-fenced for CF services. Once these positions were in place, it would mean that only 55% of the basic staffing levels recommended by Dr Pollock would be attained. In January 2007, one year later, only 11 positions were in place. The majority of approved positions have now been advertised, but these delays have been unnecessary.

I guess it's a matter of making sure there's no more delays.

- Where does the money for anything come from? We could spend a little less on roads - there's 1.53 billion budgeted to spend roads this year. Or take some from the nearly €60 million allocated to horse racing this year - an industry from which, AFAIK, we don't make any tax.

If some of this had been in place already, specifically the adult centre in Dublin, my friend might still be alive today.
Siljasilja on May 14th, 2007 09:10 pm (UTC)
Good points; we could start more toll roads, which will pay for themselves (and hopefully cut down on traffic, too!).
 dudi killimengrikillimengri on May 13th, 2007 09:37 pm (UTC)
I'm not allowed to give blood because I lived in the UK, does this aply to organ donation too? In England, my details were held on an organ donation database saying that I'm agreeable for anything that can be used, can be used in the event of my death. Not heard of anything like that in Ireland.
a very caring potatomollydot on May 14th, 2007 09:10 pm (UTC)
I don't know... <google, google, google>
I haven't found a specific answer to that, but I have found this:

On 21 January 2004 donations at the Eye Bank Register ceased. (This is due to the theoretical risk that nvCJD could be transmitted in transplanted corneas. Until the risk of nvCJD is lifted, the Eye Bank Register will remain closed).

AFAIK, the reason you can't give blood is the risk of CJD. It seems they're only worried about eyes and not other organs, therefore you can.

More googling indicates that there isn't a database. As far as I'm aware, the most important thing is to tell your next of kin, because they are the ones who actually get to decide. The card is an indicator of your wishes, but means nothing with out relatives' consent. I think they can also override your wishes if you don't want to donate.
 dudi killimengrikillimengri on May 16th, 2007 01:21 pm (UTC)
So my blood is banned, but other bits, fed on my blood are fine ~ seems strange :) Thanks for looking it up for me, I'll go hunting for a donor card
a very caring potatomollydot on May 16th, 2007 01:25 pm (UTC)
It is a bit odd!
(Deleted comment)
a very caring potatomollydot on May 14th, 2007 09:11 pm (UTC)
Thank you.

I must get my rants together. That's my biggie, but there's other things I want answers on.