‘Lottery’ Of Care For Dying Patients Revealed

Terminally-ill patients are experiencing a lottery in care with wide variations across Scotland in home support in their final months.

{mosimage}Some health boards offer patients an average of 140 hours with specially trained nurses, while those in other parts of the country receive only an average of 40 hours.

The figures from Marie Curie Cancer Care, the first time the charity has released them publicly, also show that demand for its home care nurses often bursts the budget agreed by NHS managers.

Research has shown that 75% of the public would choose to die at home, but only 23% of people are able to fulfil this aim.

Aileen Eland, Scotland nurse manager for the charity, indicated cash shortages and the low priority given to end-of-life care were behind the problem.

She said: “Every manager I meet with wants to have the best for their patients, there is absolutely no doubt in my mind about that, but they are constrained. What they would like to do and what they can do are two different things.”

Marie Curie staff provide patients and relatives with physical, emotional and practical help across the whole range of terminal illnesses.

In response to a survey, conducted by The Herald ahead of a major conference in Edinburgh this week, nearly two-thirds of back-bench MSPs who responded said not enough care was provided.

Labour MSP Ken McIntosh said: “Despite everything that has been done in recent years we still find death difficult to talk about. The services around the country are patchy. The end part of palliative care is still not very well planned because all the wrong things can happen.”

Mrs Eland said that her own mother, Evelyn, died at home. She was fortunate enough to be in a health board area offering relatively high levels of assistance from Marie Curie.

Mrs Eland said: “It just made life so much better. It allowed me to get a night’s sleep or get out for a little while and just be able to survive, because it is so difficult.

“If we had not had that care, I would have had to give up my job much earlier. I would not have been able to work for several months. I would have been very exhausted and very isolated.”

If her mother had lived in an area offering the lowest levels of support, Mrs Eland said, most of this help would not have been available. Instead, she said, her mother would have qualified for support only days before she died.

When the NHS asks Marie Curie to look after patients, it pays 50% of the costs and the charity meets the rest of the bill.

At the moment NHS Scotland is paying £1.5m toward the home nursing service and there are innovative schemes improving services. In Tayside, an ambulance to provide terminally-ill patients with transport home from hospital has been launched.

In Dumbarton, a system is in place which identifies people who are dying and brings doctors and carers together to agree a plan for their care.

A Scottish Government spokesman said: “We believe that palliative care should be available to anyone suffering from any life-threatening illness from the time of diagnosis onwards and expect NHS boards to ensure people’s needs are met through a range of services including hospice and home care.”