Charity says thousands 'don't get the palliative care they need' in UK

New findings published today by leading charity Marie Curie show that there is limited understanding of what palliative care can do, who it benefits and when to introduce it. It reveals that professionals do not receive enough training in the area and often miss the opportunity to consider whether there is a palliative care need.

Consequently, the charity is calling for healthcare professionals to receive further training and development in palliative care to ensure that everyone with a terminal illness gets the care and support that they need.

In a just published report, ‘Triggers for Palliative Care’, the charity shows there is limited understanding of what palliative care can do, who it benefits and when to introduce it. It reveals that because of a lack of training professionals often miss the opportunity to consider whether there is a palliative care need.

Palliative care focuses on providing individuals with relief from pain and other debilitating symptoms and the stress associated with advanced progressive illnesses. The goal is to improve quality of life for both the patient and the family, and includes psychological, social and spiritual support. It can begin at any stage of an illness and can be provided alongside other curative therapies.

Identification signs

The report highlights the different signs that help to identify when someone needs palliative care, particularly people with conditions such as heart failure, chronic obstructive pulmonary disease, dementia, end-stage liver disease, motor neurone disease and conditions such as multiple sclerosis, Parkinson’s disease and stroke.

These people are currently less likely to receive palliative care than people with terminal cancer because their illnesses tend to be more unpredictable in their progression than cancer, which tends to involve a recognisable decline.

Many more could benefit

Dr Jane Collins, chief executive of Marie Curie, said: “Each year around 110,000 people in the UK don’t get the palliative care that they need. Many people who could benefit from palliative care earlier in their illness miss out because doctors, patients and their families do not realise when it is needed and incorrectly assume it is only for people who are in the final weeks or days of their lives.”

“Palliative care can benefit people with many different illnesses and at different times in those illnesses. Healthcare professionals simply don’t receive enough training to be able to recognise when someone needs palliative care or when someone is dying. Today’s findings and the recent Parliamentary Health Service Ombudsman report demonstrate that we need to change this.”

The need for more training is reinforced by the findings of a Marie Curie-commissioned survey of 500 UK clinical professionals in which more than a third (39 per cent) say that a lack of relevant experience amongst staff delivering care is a barrier to meeting the needs of terminally ill people and more than half (55 per cent) consider better identification of an illness as terminal to be highly important in improving the quality of patient care.

Joined up care needed

Professor Rob George, president of the Association for Palliative Medicine of GB & Ireland, said: "Adequate and expert care of people as they seek to live with life-limiting illness must be a priority in any civil society. Yet this important report joins a series of publications over recent months showing this not to be the case generally. Too often the person gets lost in medicine's preoccupation with treating their disease.

“It is not that we don't have the models and approaches to care, it's that the conversations are not joined up, and not just at the bedside, but between those needing care and those commissioning and providing it to design and deliver services and support that makes sense at that bedside. This report gives much needed factual contexts for such conversations across our society and health economy. As specialists on the front line, the Association for Palliative Medicine welcomes this whole-heartedly.”

George McNamara, head of policy and public affairs at Alzheimer’s Society, said: “Shamefully, palliative care has been overlooked for too long. Too often those at the end of life are being let down by a system that does not meet their needs. Dementia is the most common cause of death in women and many people living with the condition spend their final days in unfamiliar hospital surroundings rather than in their own home with loved ones. The system must change. Training must be seen as a necessity, not an optional extra.”

Powers of transformation

It’s a view that the National Council for Palliative care concurs with. Its chief executive Claire Henry, said: “Palliative care can transform the lives of people who are terminally ill, which is why it’s unacceptable that so many people who are approaching the end of life and who could benefit from it are not being given the chance to do so.

“People need to have meaningful choices about their end of life care, but this will only happen with a greater awareness of how palliative care can help across a range of conditions. Caring for all dying people must become a priority for policymakers, commissioners and service providers alike, and the healthcare workforce should be supported, including through mandatory training, to become better at discussing dying and identifying palliative care options. It is wrong and unfair that we have a ‘diagnosis lottery’ where the quality of care you receive depends on which illnesses you have.”

George McNamara, head of policy and public affairs at Alzheimer’s Society, said: “Shamefully, palliative care has been overlooked for too long. Too often those at the end of life are being let down by a system that does not meet their needs. Dementia is the most common cause of death in women and many people living with the condition spend their final days in unfamiliar hospital surroundings rather than in their own home with loved ones. The system must change. Training must be seen as a necessity, not an optional extra.”

Campaigning for change

To coincide with the publication of the report, Marie Curie has written to NHS medical and nursing directors around the UK, urging them to improve access to palliative care for everyone (both people with cancer and non-cancer conditions) in the hospitals that they run. This includes ensuring that all staff know how to access palliative care teams and that staff, patients and their families are provided with enough information.

Marie Curie is also campaigning for mandatory undergraduate and continuing professional development training for health and social care professionals in providing care to people who are dying.