“I felt almost abandoned until Marie Curie came along”

In our recent report – Triggers for palliative care – we call on health professionals to improve access to palliative care for people with all terminal conditions. We’ve identified a number of ‘triggers’ to show when a person needs palliative care. For some conditions, such as motor neurone disease, this should be at the time of diagnosis.

Ena McKnight was diagnosed with motor neurone disease in August 2011. She received care in the Marie Curie Hospice, Belfast, which enabled her to go home to die in June 2012. But before she was referred to Marie Curie, Ena’s husband Denis struggled to get the care they needed.

Denis says: “It was a difficult illness to nurse. I felt almost abandoned until Marie Curie came along and I saw what real care was all about. Ena had been very ill for about nine months. I was constantly caring by myself. She had a PEG [feeding tube] fitted in September 2011. The only contact I had from the NHS, from the nursing side, was once a week to change the water in the holder in the PEG.

Lack of support

“I found the district nursing staff really, really poor. There were times I thought they really didn’t care. One nurse who called every week, I called her Flash Gordon. At three minutes past nine she came and at five minutes past nine she was gone.

“There was a physiotherapist calling once a month. There was a dietitian and speech therapist. But we saw them once a month, for half an hour.

“Then the social worker said she could ask Marie Curie to do an assessment to see if I could get support from the sitting service. I found it extremely difficult to get out, to go shopping. After the assessment they started to set up visits for the afternoon and overnight.

Respite care

Our report shows that palliative care can help people living with motor neurone disease and other progressive conditions. One of the Marie Curie Nurses who was visiting Ena recognised that she would benefit from a stay in the hospice and that Denis needed some respite care to help him cope.

“She organised on that same day for Ena to go to the hospice,” says Denis. “They were absolute angels. The consultant and the day staff waited on to see her in the evening and do an immediate assessment and get her settled.

“There was one nurse in particular, called Jane. She took Ena around the hospice the following morning in the wheelchair. She was saying: ‘You’re in here to get a bit of comfort, not to die. We know you’ve got a bad diagnosis; we want you to be really comfortable.’ Ena hadn’t had her hair washed for a month because I wasn’t able to get her in the bathroom. Nurse Jane organised for her hair to be done. It lifted Ena’s spirits enormously.

“The objective was to get Ena in there and to get her completely stabilised, and then get her home again, which is what happened. I feel sorry for those who don’t receive the support we did.”

We want to make sure that people with any terminal illness can access palliative care, when they need it. For some conditions, including motor neurone disease, people can benefit from palliative care from the time they are diagnosed. Please join our campaign by asking your local politician to prioritise care for people with all terminal illnesses.