Wednesday’s parliamentary & health service ombudsman (PHSO) report is a stark reminder of how terrible the impact can be on people with a terminal illness and their families when care goes wrong. It would be a mistake to think that these cases are extremely rare. We encounter many people who have been let down by the health and social care system and we know that in England alone around 92,000 people who need palliative care support each year are not getting this vital care. We also know that around 50% of people in the UK die in hospital – often with no clinical need for hospital care – despite fewer than 5% of us saying we would want to be in hospital at the end of our lives.
This suggests that our health and social care system is struggling to provide the right kind of care to people with a terminal illness. And the situation could get worse. By 2040, there will be about 100,000 more deaths per year, and with people dying of complex illnesses, there will be more demand for high quality palliative care.
The government must act swiftly. Investment in community-based palliative care services is a must, as this will allow people to avoid expensive and prolonged stays in hospital. Availability of specialist palliative care is also a key issue – only 19% of NHS trusts offer specialist palliative care from nine to five, seven days a week. The PHSO report demonstrates that a lack of specialist palliative care out-of-hours can lead to crisis. Extra funding will help but we also need a larger and more flexible workforce providing palliative care support to people when they need it the most.
However, at the core of the problem is a lack of communication, whether between health and social care professionals or with people and their families. It is shocking to read of people and families being unaware of a terminal diagnosis, or of doctors who don’t know how to provide pain relief to someone who is dying. Health and social care professionals with a specialism other than palliative care support many people with a terminal illness during their careers but, sadly, very few of them receive training on how to provide palliative care – either while qualifying or on the job.
This is especially urgent for GPs and district nurses, who can refer people to community palliative care services like ours if they are confident enough to have the important conversations about death and dying.
Alongside greater investment in community care and greater availability of specialist care, the government must make training in care of the dying for all health and social care professionals a priority.
