My healthcare is... both inpatient and outpatient. It can take up to five days to get a bed in the public system when it is needed, and this will not be in an isolated en suite room which is the universally recognized best standard of care for people with CF. There is a queue for the isolated rooms in the National Referral Centre at St.Vincents and they are delegated on a list bases, so there is a period of sharing on an open ward with the constant threat of cross infection, detrimental to the health of someone with CF. Sometimes an entire 3 week stint will be spent in a shared ward where it is occasionally vital to clean other peoples urine or excrement off the toilet before use. In emergency situations access a room can be faster or sometimes you get lucky. Sharing rooms with very sick people is dangerous infection wise for physical and long term health. It is emotionally draining when your room mate is extremely confused and unwell and you feel compelled to calm them every few minutes. Likewise I disrupt them with coughing or other needs depending on the severity of my illness at the time. It's unfair to all parties. Often I, and other people I know, have gone for days without sleep or resorted to sleeping in the corridors of the hospital. It is particularly bad when someone is dying in the 6 bed because it is so public and only a mere curtain separates the person from entire ward. It is clear to me in these moments how horrifically unequal our system is. Although treatment for CF in the public system has improved slowly through consistent work and pressure from campaigning over the past five years people are still waiting for access to inpatient beds and getting sicker because of it. The current health system is still limiting life expectancy in CF because of lack of instant access across the country to isolation units, dangerous inclusion in open wards and sharing toilet facilities. The new unit in St Vincents opening this April and improvements regionally will help the situation, but it was slow and forced and it still leaves numerous issues unsolved. Campaigning started 7 years ago. Everyone should have immediate, equal access to the healthcare they need.
My healthcare fear is... being realized each time I hear of someone unable to get immediate treatment for their illness, whatever it may be. Or when I see people with CF afraid to go into hospital or move from a pediatric service that no longer suits their illness to an adult hospital because of fear of cross infection and conditions. This fear is shared by many long term patients, and not just those with CF. As a long term patient it is easier to see the cuts on the ground and how they affect people directly. These are vital components to tackling the illness. I also worry about getting a life saving double lung transplant in this country when I need one because of lack of donors and slow improvement of yearly transplant rates. While things are improving, my biggest fear is that my only option will be to go to another country which costs a lot of money, time and depends on a lot of luck.
Ireland’s healthcare is... like a bad jigsaw puzzle in which the pieces are abnormal sizes and very few slot together properly. We have some of the greatest people working within a system that frustrates and sometimes breaks them. We need a more defined, accessible model of care less top heavy with administration and more focused on the entire well being of the person regardless of their financial situation, illness, gender or physical, mental and spiritual needs.
My healthcare dream for Ireland... is a clear legal framework for action, implementation and accountability for universal, equal access to healthcare. And an understanding at local, hospital and government level that we are dealing with living, feeling, spiritual, thinking and empowered individuals with an illness, whether it is long term like mine or fleeting. A person with an illness that must be treated immediately, not an illness with a person attached.
I, Orla Tinsley, have signed the Healthcare Guaranteed petition and have asked the government to provide a legal guarantee of equal access to healthcare in Ireland. You should too.
