Our family found out the hard way that, for many people, out-of-hours palliative care is an accident waiting to happen.
When my father-in-law was diagnosed with terminal cancer my wife's first response was that she wanted him to die peacefully at home. He did die at home, but his last hours were anything but peaceful.
As the end neared he became more distressed, and on the morning of the Sunday he died, the decision was taken to set up a syringe driver. Then the problems began.
The Macmillan nurse is not on duty at the weekend. Locally, on-call doctors do not carry controlled drugs. The out-of-hours service had a list of on-call pharmacists, but this is a voluntary service and most could not be contacted.
Even worse, no single pharmacy stocked all the drugs needed. After a considerable delay the out-of-hours team eventually sourced half the medication from a pharmacy in Bedford (eight miles north) and the rest from Luton (12 miles south).
I was worried in case a minor irregularity with the controlled drugs prescriptions (such as the prescribed ampoule size needed not available) led to more delay. So at a time when I wanted to be with my family, I decided to collect the controlled drugs from Luton. If that failed I could write an emergency prescription.
I was right to be concerned. Our family nearly did not receive the glycopyrrolate coming from Bedford because the on-call doctor had not initialed a minor amendment to the prescription.
The pharmacist was reluctant to part with the medication and only gave in when it became obvious that my daughter, who by then had the drugs in her hand, would not let go of them.
It took four and a half hours to acquire all the drugs. By the time I returned from Luton my father-in-law had been dead for 30 minutes. He never received the sedation he needed and I was unable to be with him at the end. Since that weekend we have learned that our experience is by no means unique.
One of our close friends who is a Macmillan nurse had to give her own terminally ill father an injection of diamorphine for sudden, overwhelming pain because on a Saturday night (in a different PCT area) no district nurse was near enough to come urgently to administer it.
He died half an hour later leaving our friend feeling that she had killed her own father.
What should have been a sad, intimate and personal time of bereavement for her turned into a guilt trip that interrupted the grieving process enormously.
Terminal care should not be like this. We cannot have families less well supported in the community than they would be in hospitals or hospices, especially as the NHS wants to increase the care carried out at home.
Professional help for terminal care is not always available out of hours, and out of hours covers a longer period than 'in hours'. There is a greater than 50 per cent chance that urgent assistance will be needed when few professionals are on duty.
The controlled drugs regulations, intended to prevent illegal access to drugs of addiction, make it harder for those who need the drugs to get them urgently, especially if there is a minor mistake on the scrip, or a pharmacy cannot supply all the drugs on one prescription.
What needs to change? Primary care organisations must recognise that crises in terminal care are more likely to occur out of hours than in hours and arrange for staff, equipment and drugs to be available urgently.
This does not mean depending on individual (often distant) on-call pharmacies to supply medication, but on creating local caches of terminal care drugs, available within 20 minutes. The national regulations for controlled drugs need to be relaxed to meet terminally-ill patients' needs. It should be possible to arrange an amendment to an urgent prescription (even for a controlled drug) over the telephone.
Expert advice about terminal care medication in should be available in five minutes. We need a national service on the lines of Guy's and St Thomas' Poisons Units where any doctor can obtain immediate advice on terminal care medication.
Medical and nursing staff do sterling work in the UK (and I pay tribute to the professionals who attended my father-in-law), but the system needs tightening up. I am glad to report that our PCT (Bedfordshire) has responded to this challenge. I hope that by writing this, my father-in-law's painful last hours were not in vain.
- Dr Lockley is a GP in Bedfordshire.
WHAT NEEDS TO HAPPEN
- Expert advice about terminal care drugs should be available in 5 minutes via a national service.
- Terminal care crises are more likely to occur out of hours so primary care organisations must arrange for staff, equipment and medicines to be available urgently.
- The current controlled drugs regulations need to speed up access to them by those who genuinely and urgently need them.
- There should be local, secure caches of terminal care drugs, available within 20 minutes.