(no doubt this will be classified as an unfair) question to the cabinet about cystic fibrosis

So once again we see the provision of isolated (read, appropriate) beds for Cystic Fybrosis patients coming to the fore. The indefatiguable Orla Tinsley, CF patient, writer and social media exponent, has been hospitalised, and is telling her story.

In  nutshell, Ireland has the highest incidence of CF in the world. I have had family members (and friends) die from this so I dont pretend to be neutral on this one. Anyone who wants to know the appaling mess that is CF inpatient care in Ireland should follow her on twitter @orlatinsley The crux of the problem is that despite this highest incidence there are not enough, not nearly enough, appropriate inpatient beds for these patients. And now it seems that some of the isolation beds for CF are being appropriated for other, no doubt equally ill, patients, with CF patients being placed in mixed wards or sharing facilities. A feature of CF is appalling vulnerability to infection during an acute phase so shared facilities are not a good idea. Patients, desperately ill, are actually better off at home they feel, where at least they have built some immunity to the local environment.  

here are some of Orlas tweets 

  • The shared toilet with no disinfectant or wipes : https://twitter.com/orlatinsley/status/273684606996340736
  • bleeding lungs but no beds available https://twitter.com/orlatinsley/status/273435889865211904
  • a quadruple room (for a patient with compromised immune responses and infection vulnerability) https://twitter.com/orlatinsley/status/273473607257174018
  • CF patients in A&E (emergency room) as no beds available https://twitter.com/orlatinsley/status/273499709862195200

and so on. And this in a country which has a medical doctor as its minister for health

So, here is my question. Jim Reilly (health) and Leo Varadkar (minister for transport) are medical doctors and cabinet ministers. Medically, do they think this is acceptable? Would they be happy with their patients being so treated? Would they think it appropriate?

  If as one hopes the answer is no then we should never have to see this happening again and the full complement of CF beds will be opened and made available. Conversely, if we do so see it happening, then we need to think hard about the quality of our cabinet, medically, morally and politically. No doubt thats going to be cast as unfair. I’ll live with it. 

 

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