My own view on palliative care is that it’s not just about someone who is coming near the end of their life. I think palliative care should be available for people with life-limiting illnesses when those illnesses start to become serious; the one that I would have most experience of would be MS. So for instance when a person moves into progressive MS, I think that palliative care should be available to make their life, leading up to the, whatever number of years, it could be 15, 20, 25 years that they have left, but to make sure that those years are as comfortable as possible and they can live with their illness to the best of their ability. And to me that’s what palliative care is about; it’s not really about dying.
I gave up work 20 years before Marie died to look after her as her full time carer, on the basis that it wasn’t safe for her to be in the home on her own, there was just the two of us living in the house and I was working away most mid weeks either down the country in Ireland somewhere but mostly abroad. So Marie would be spending a lot of time on her own and just wasn’t safe for her because her mobility was going and literally just wasn’t able to look after herself. So I approached palliative care myself realising that Marie was I suppose, well, for want of a better term. They didn’t want to know. Palliative care just wasn’t available. I accept completely the resources, the limited resources that are there, just like hospice beds, that the limit of resources that are there and that those resources have to be used where they are needed.
The way that it came about, that we got access to palliative care or got even to speak to palliative care people, although I’d been trying and trying for years, was when Marie’s court case, when Marie’s case was in the High Court. Within a couple of weeks of that we were contacted by palliative care to find out what they could do because the papers reported it and that was how we came to have access to, or the access was very limited, in fact it was a visit from a doctor and a nurse to do an assessment and more or less the decision was made that palliative care didn’t play a part in Marie’s care at that time. Hospice beds here in Ireland are largely occupied by people with cancer, because again the time that they need them for is predictable, whereas with an MS person if, for instance, Marie went into a hospice the first time she got pneumonia and was supposed to die, she could have been there for five years and because the beds are very limited that wouldn’t be an economical way of using the resources that are there. So it suffers both ways, it’s not available; the resources aren’t there because the resources are only put into a limited number of people that should be accessing palliative care.