Here’s a case study from the Department of Health. Emily, a 28-year-old chiropodist, has a brain tumour. Most of the time she manages her medication herself; but when her condition deteriorates, she depends on her parents for care. This case study describes what happens to Emily over one particular weekend.
On Friday afternoon, district nurses from Emily’s GP practice arrive to set up a syringe driver for her. The next morning, a Macmillan nurse increases her dose of dexamethasone.
Emily’s condition continues to worsen, so her parents phone the out-of-hours on-call centre. Centre staff have no record of Emily. They contact her hospital, but the skeleton staff on duty at the weekend can’t provide any information.
In the afternoon, Emily becomes very distressed. An on-call duty doctor comes out to give her an injection of midozalam and a prescription for a further vial. He does not give Emily’s parents any information about her condition or arrange a follow-up visit, although he promises to brief the twilight nurses at the centre about her.
In the evening, Emily’s condition worsens again. Her parents call the on-call centre, but are told the doctors are changing shift. After a delay, it is agreed that Emily needs more midozalam, which takes over two hours to locate.
Emily’s father has to drive to a local hospice to collect the drug. He is kept waiting in a dark corridor where he can overhear staff talking about his daughter. After 30 minutes, he is told he is not authorised to carry drugs and sent home. Eventually, a doctor arrives with the medication in the early hours of Sunday morning.
Later, Emily’s parents, concerned that she will need more midozalam to tide her over until Monday, call the centre and ask for another prescription. They drive to collect it, and call several pharmacies to check that they are open and have the drug in stock. No single pharmacy can fulfil the whole prescription.
They get home in time for the weekend duty district nurses to administer an injection and recharge Emily’s syringe driver. Emily needs more pain relief but the nurses won’t increase her dose without authorisation. At midday on Sunday, her parents phone the on-call doctor to ask for a prescription for a higher dose.
Her father then drives to pick up the prescription, and drives on to another pharmacy to collect the medicine. The full amount is not available. He returns home and phones the on-call centre to ask for someone to come and administer pain relief. At 2pm, the duty doctor and district nurse return to administer an increased dose.
Mrs Grumble used to be a GP. Dr Grumble asked her how she would have managed such a patient all those years ago. She had no doubt how her practice would have done it. She and her partner would have ensured that one or other of them was available 24hrs a day – including at weekends. This is part of the vocational element of being a doctor. But it's not easy.
The Department of Health suggest that the solution is a care plan. But what might become the main problem in a dying patient like Emily cannot be predicted. It could be a fit, it could be an infection, it might be a pulmonary embolus or all sorts of other things. Whether to treat or how to treat is not a simple matter that can be laid out in advance. The management cannot be easily protocolised. These are not problems that can be solved with just care plans and motley staff who do not know the patient.
How can we ever get back the high quality out-of-hours service some of us used to have? If you have any ideas tell the Department of Health. You have until 5th January.
The document this case study comes from is called Direction of Travel for Urgent Care. Dr Grumble suggests a U turn.
This post was originally published on 31st December 2006. Unfortunately nobody took any notice and it is now being made public that general practice as we know it is coming to an end. Click the headline below for more details.