The distress of uncontrolled pain and symptoms for dying people can’t wait for ‘opening hours’. But there is hope.
There's a long way to go towards making sure people at the end of life get the right care, no matter the time of day or night. But the good news is there's some excellent innovation happening across the UK which is helping to fix the problem.
Why is out of hours care so important?
When someone's in the final weeks, days and hours of life, they need expert care, and they need it now. No one should have to wait for hours overnight or over the weekend in order to get the treatment they need – whether they're in pain, or have symptoms which need to be managed to make them comfortable.
Where the services to help these people don't exist, they often have no choice but to go into an acute setting. That means being rushed into a busy emergency department by ambulance, where the specialist palliative care they need is not the focus.
We're already seeing some excellent examples of how closer working across services can dramatically improve what's available to people in their hour of need.
The current picture
NICE guidance says we should have out of hours palliative care support everywhere in the UK. But last year, Marie Curie's Better End of Life report highlighted the reality – that it's patchy. Only 32% of palliative care leaders surveyed said there was a designated out-of-hours telephone advice line for palliative and end of life patients in their area.
This lack of timely care affects some groups more than others, perpetuating the inequities in our society. The report found people who live in the most deprived areas are more likely to attend emergency departments in their last year of life.
Even in areas where some sort of service exists, the administration of medicines will often fall to district nurses, who are already overstretched. There's often a skeleton staff at night so they may not be able to respond as quickly as they would like to.
Where families can't get the care they need, the emotional and practical labour of having to try and plug the gap can be incredibly scary, exhausting and frustrating.
It's my hope that we can fix the out of hours issue with palliative care services across the UK.
The good news
However, this problem isn't insurmountable, and we're already seeing some excellent examples of how closer working across services can dramatically improve what's available to people in their hour of need.
One example is the REACT service in Bradford. Palliative specialists work in the emergency department of the hospital to proactively identify and support people coming in with palliative care needs. They will then set them up with the right care at home or support them to be admitted to hospital if that's the best option for them.
There's still analysis to do, but the data we have shows that the average number of days people with palliative care needs spent in hospital in their last year of life went down from 38 to 17. Not only does this mean people feel better supported to spend their limited time at home, but it frees up beds in hospital for people who really need to be there.
Another example is the Cambridgeshire and Peterborough Palliative Care Hub. People who need out of hours care, or their loved ones, can call 111, press option 4 and be put directly through to the service. It's staffed by Clinical Nurse Specialists who offer advice, support and information. They work collaboratively with other local services including the ambulance service and district nursing teams to support people in the best way for them.
So far, the hub has received lots of positive feedback from the people who used it, helped avoid 410 unnecessary admissions to hospital and reduced the number of calls to out of hours GP by 62%.
More to be done
These are just a couple of examples, but there are more. It's my hope that we can fix the out of hours issue with palliative care services across the UK, and this will have a hugely beneficial impact for people at the end of life, their families and friends. Not only this, but it will help the acute services needed for people with other healthcare needs to focus on what they're best at.
The key things are that we work together across disciplines and organisations, and together with people who have lived experience of terminal illness, to co-design services which are truly collaborative and fit for the populations we serve.
Ahead of the next general election, we're calling on all political parties to close the gap in end of life care and ensure that everyone receives the best possible care and support, no matter the illness. Read Marie Curie's manifesto for better end of life care.
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