On grief and why end of life care matters.

I visited St Teresa's Hospice today to place my father’s name on its Christmas tree, in memory of those who left us in 2024.

Dad died of kidney failure in January, following a stroke four months beforehand. This is my first Christmas without him. He spent his last Christmas Day in hospital while he was waiting to be discharged (I was arguing against this, knowing something was wrong) Dad was discharged the first week of January, against my wishes, and dead two weeks later.

I consider myself a resilient person, but grief has had other plans for me this Christmas. I’ve found myself wobbling putting the tree up, welling up having a laugh and a joke with an older gent in M&S and surprise crying over the washing up when I was trying to work out who was missing from the annual who-buys-who-what for Christmas routine, when I remembered it was because my Dad has gone. Grief comes to bite you when you least expect it, but I’ve learned to lean into it and give it its moment.

Dad and I spent four months in a system of chaos before he died. Hospitals. Respite care; we thought he’d recover. He didn’t. He went downhill with terrifying speed. Back into hospital, moved to another hospital. I won’t talk about the issues we encountered overall as I am going through a process with my local NHS Trust about care received, which it has already acknowledged was below the standard expected.

Dad chose to come home with me to die at the end. Neither he or I wanted him to die in hospital. I spent his last days in hospital preventing them from moving him from A&E where he was dying in a bed for two days (it was winter) to a ward full of people. Have you been on a hospital ward recently? They’re not calm places where you want your loved ones to die. I left my Dad’s side for 15 minutes to get a sandwich and staff moved him anyway while I was gone. My friend (I will be forever grateful for this) told me to say palliative care and arrangements were soon made for Dad to come home with me, to be looked after by me and the rapid response team from St Teresa’s Hospice. By this time, the risk was increasing that Dad would die in hospital and I was told not to leave. We were told at 10am that a specialist palliative care ambulance would arrive in an hour, as was usual for dying patients. The ambulance service arrived over nine hours later - 8.45pm - at a point where I was five minutes away from wheeling my father out of hospital and ten minutes down the main road to my house on a trolley, desperate to get him back to where he had chosen to die.

Instead, the ambulance service transported my dying, distressed and in pain father (who was begging for help at this point) back to my house with all the grace of handling a sack of potatoes. The ambulance driver complained because there was a step to our front door, then complained because we had to negotiate a corner to get Dad into the room where his bed was. It was inconvenient. Both ambulance staff refused to move my dying father from a trolley into his bed saying "not my job", so my husband and I gently lifted Dad and all his attached medical equipment on a sheet into a bed. My husband remains angry about this nearly a year later.

One hour later, the rapid response team from St Teresa’s arrived and everything changed. I’d heard that hospice staff were angels and I can confirm - they are. They came back the next morning (and subsequently twice a day, also more when I needed help) and Dad was made comfortable and given his dignity. I watched him visibly relax. Everyone thought he would die straightaway, but he took five days and those five, precious days where I got to give my father the good death of his choice, where he wanted and with who he wanted to be with, were invaluable to me. They have helped me to repair following his loss. This was only possible with support from the rapid response hospice care at home team. My father died peacefully on January 17th 2024, holding my hand as he had asked. St Teresa's has his name documented in a beautiful book featuring artist illustrations - I wasn't expecting to see it and I cried when I did.

Why am I writing about this? Grief affects us all and so does end of life care. When I read that St Teresa’s Hospice had lost the contract for its 24/7 rapid response service to County Durham and Darlington FT, I was so horrified I contacted my local MP Lola McEvoy . The quality of the hospice care we received outstripped that of any other. Based on our experience, I am confident we would not have received this exemplary care, care which provided comfort for my family as well as my Dad in his last days, from my local hospital trust.

Hospices need proper funding. They are a vital part of communities and if it wasn’t for my local hospice team and the wonderful care we received once we’d left hospital, I would have been rendered utterly traumatised by this experience. We will all go through end of life care with loved ones, if you haven't already. I will be watching closely to see what the government is doing to prevent further cuts and offer funding packages in a time where we are hearing about the increasing financial pressure hospice teams are under. Hospices provide a community service which cannot be replaced. To allow this to be reduced in any way is catastrophic and not in the best interests of local communities.

Support your local hospice. They need you.