She was happy to be here

Pauline O’Neill’s mother, Emer McBride, became “very settled, very calm” once she was in the Macmillan Unit at Antrim Area Hospital. “She was happy to be here,” Pauline told Love Ballymena. “Mum found peace, which is what she wanted.”

That is not the picture most people carry when they hear the words palliative care. This week, from Sunday 6 September to Saturday 12 September, the All Ireland Institute of Hospice and Palliative Care is running its thirteenth Palliative Care Week. The theme is a correction: It’s Not What You Think.

Today the professionals gather in Newry. The All Island Practice Conference sits at the Canal Court Hotel, registration from half past nine. Northern Ireland’s health minister, Mike Nesbitt, is listed to speak. So are Dr Elizabeth Morrow of the Royal College of Surgeons in Ireland, on rehabilitative palliative care, and Dr Emma Lundy of Evora Hospice Care, on motor neurone disease. The day is free. It will not, on its own, get anyone a bed.

Karen Charnley, AIIHPC’s chief executive, put the misunderstanding in plain terms in July. “People often hear the words palliative care and assume it means someone is coming near to the end of their life. That misunderstanding means people with life-limiting conditions are missing out on the wide range of physical, social, spiritual and emotional supports available that could make their daily routines much more comfortable.”

Martina Donaghy, a palliative care facilitator at the Western Trust, said this week that the work is for people of any age, with many different illnesses, in hospitals, care homes and at home as well as in a hospice. Emma King, who manages the Trust’s Macmillan specialist team, added that support can start from diagnosis: help with symptoms, and with staying able to do what still matters. End of life care is one part of it, she said, usually when time is short. “Palliative care is not only about dying.”

Pauline’s list of who helped her mother is useful here, because it is not a consultant’s job description. Nurses, doctors, healthcare assistants. “The domestics who used to come in and talk to mum in the morning.” Everybody who works there, she said. “There wasn’t any need of mum’s that was unmet.”

The Macmillan Unit is twelve single rooms on the Antrim Area Hospital site, for adults with more complex needs. It opened in June 2011, a partnership between Macmillan Cancer Support and the Northern Trust. It takes people with advanced cancer, and also lung disease, motor neurone disease, kidney failure and heart failure. Each room has a bathroom and a way outside. A relative can stay overnight. Admission is by how urgently the care is needed, and when a bed is free. Priority goes to people who live in the Trust area. While they wait, hospital and community teams are supposed to keep going.

The Trust is using Pauline’s story, and others, to ask people who have been through this care — including after a death — to join a service user network. It wants the less good stories as well as the settled ones. Sharon Stewart, already in the group, said caring for her husband was a privilege and the hardest thing she had ever done. Sitting in those meetings, she said, was a relief: they heard her. Updating a booklet is not the same as being in the room at the end. It is still a kind of work.

If you want a map of what is actually on offer across the island, AIIHPC keeps The Palliative Care Hub for adults, children, carers and professionals.