Andrew Lansley last night revealed his personal difficulties navigating the NHS’s palliative care services when his father died last year.
Speaking at an event to commemorate the 20th anniversary of the National Council for Palliative Care, the health secretary gave a frank account of the death of his father, Thomas, six months ago.
Lansley said that his father, who had suffered from cancer, eventually had a “good death”, but he also described his confusion over who was in charge of his treatment and how his father had to remain in an observation bay for several days because no other bed was available.
“Those six months leading up to his death were very difficult,” Lansley said.
“I may have been secretary of state at the time but I still had a Sunday evening where I was trying to find him in the hospital that he had been taken to by an ambulance, and that took me about an hour and a half.
“He was still in the observation bay next to the Accident and Emergency department for three or four days because they had no bed where he could be transferred to.
“I still had the moment where he was in an inpatient bed in a community hospital and he discharged himself, because he thought ‘nothing’s going on here’.
“It was difficult – I’m the secretary of state, for goodness sake – trying to work out, at any given moment, who was in charge. Was it the GP… or was it at that moment the oncologist, was it the palliative care consultant, was it the hospice?”
But at the end of his father’s life, he continued, “things at the end did get joined up, and we did know who was in charge, and palliative care was good”.
He concluded: “It’s very difficult to say because he got to the point where we couldn’t have a conversation, it was just a case of him squeezing my hand, but frankly… at the end I don’t think he would have felt there was more he would have wanted.
“When we talk about what does a good death look like, I have had a chance to see it.”
Mr Lansley also told the gathering that a survey of bereaved carers should become part of the NHS’s new performance management system.
The health secretary said he hoped an indicator based on the survey, which is currently being developed by the Department of Health, would become an “important” national outcome measure for the health service.
The 2011-12 outcomes framework included a “placeholder” for a measure based on people’s experiences of end-of-life care, but the survey had not yet been developed. It anticipated that “an indicator will be available drawing on a nationally co-ordinated survey from 2012-13”.
Professor Sir Mike Richards, the government’s cancer czar, last night told the NCPC audience: “I was particularly glad to hear the secretary of state mention the survey of bereaved relatives, because you heard it, I heard it, so that means we will get it.”