New cystic fibrosis unit won't help enough patients
THE LONG-AWAITED cystic fibrosis unit in St Vincent’s Hospital in Dublin is due to open next month, as announced in the Dáil by the Minister for Health last February.
The unit, designed to serve not just those with CF but groups including oncology patients and other immune-suppressed people, now looks like it will take some unspecified amount of time to kit out, despite the June date. There are also more complex immediate issues that need to be addressed.
After the seven years of campaigning it has taken for the unit to be built, if the finer details are forgotten in the midst of such a triumphant achievement, people with CF in Ireland stand to lose out immeasurably.
The persistent issue frustrating both patients and staff alike since April of last year, when a contract was drawn up between St Vincent’s hospital, the Health Service Executive, CF consultants and the Cystic Fibrosis Association of Ireland, is the number of beds allocated for those with CF.
Instead of 34 inpatient beds and an outpatient department, we are being given 20 inpatient and 10 outpatient beds. The official policy is that the numbers can “vary” and that “20 beds is a minimum and not a maximum”, but the new CF ward is built and there are only 20 beds on its floor. Where will other people with CF be accommodated once the 20 beds are full? The new ward block, the Nutley Wing, will surely not have large amounts of beds lying idle.
The idea was that two extra beds would always be free for people with CF and then two more would be made available as needed. In the winter months there can be up to 40 people with CF, while in the summer it is significantly lower. It’s a year since this contract was drawn up and last month a CF consultant said on an afternoon television show that our “34-bed unit” was opening this year.
There was that defined figure popping up again as if it had never left. But there are 20 beds on the allocated CF ward. The 10 outpatient beds are not on the same floor as the ward, are not suitable cubicles and are not staffed at night. They are not fit for purpose.
CF requires immediate access to isolation rooms with specialist staff trained to deal with the intravenous drugs, nebulisers, CF-related diabetes and arthritis to name but a few issues.
Having spent so long without cubicles in rooms where our lives are at risk and after watching friends die in six-bed rooms, denied the dignity of silence and peace in their final hours, there is no going back. The eight single rooms that were opened in 2008 barely sustained the more than 300 patients that attended St Vincent’s over the past four years as the unit was squabbled over and we waited on a list in mixed wards in the hopes of getting a glimpse at a cubicle.
Things have improved immensely, but the battle for equality of treatment was being pursued by other people with CF long before I started writing about it. A friend who died in 2005 remembered being asked in pyjamas to stand in a photograph with a hospital official on the site where the CF unit would be in 2001. That unit never came and she did not live to see the massive 100-bed building now standing between the morgue, the main hospital and the golf course today.
So there the new unit stands in its magnificent glory. It lives and we should be proud of the love, strength, persistence and massive relentless support that has gone into it from all corners. But we should also be careful not to let this good work slip at the last hurdle.
Last week a CF advocate in the US posted on her Facebook page about how the new revolutionary drug in the US nicknamed “Blue Lightening”, the first in history to treat the root cause of CF in people with a particular mutation, has improved the health of three people with CF so much they had been taken off lung transplant lists.
This week, in a new development, the company that made “Blue Lightening” said that phase two trials of it combined with another drug, being used to treat the most common mutation of CF, the one I have, has show astounding results. The “significant improvement” in lung function in people using it means people with CF can now maybe start believing in the idea that a simple little pill, taken twice daily, could one day erase or reduce the need for hours worth of nebulisers, drugs and treatments every day.
The idea of going on holidays with one set of pills rather than a back pack with nebuliser machine and a mini pharmacy looks like it might become a reality in the future. It is nothing short of a miracle. This won’t just be a treatment, this small tablet gets to the root cause of CF and looks like it improves quality of life. Of course the next step, once it is approved, will be getting access to it in Ireland.
There is no time to waste squabbling over the basics of units and buildings, nor the cost of drugs that will save lives. There is no point in continuously telling the sad tale of what happens when real facilities are not provided, of the very real physical, emotional and life-zapping wounds that are inflicted over long periods of waiting for the correct international standard of care and treatment that will keep the older and younger generations alive.
We need to stay well enough so that when these miracles come along we can grasp them and benefit from them. We are this far, seven years later, with belief in humanity and with everything to live for. Let’s get it right the first time.