Unpaid carers say loved ones didn’t get care they needed

Marie Curie has warned that three out of four people who died at home during the pandemic may not have got all the health and social care they needed.

Carers surveyed by the end of life charity said their loved ones didn’t get all the help they needed with pain management (64%), personal care (61%) and out-of-hours support (65%) before they died at home.

While 78% said that the pandemic meant they took on more emotional burdens when caring for their dying loved one, and 76% of all respondents felt they were not offered all the care and support they needed as carers.

Susan Lowe, from the West Midlands, cared for her mother, Sheila, before she died in April last year with bowel cancer:

‘Caring for my mum in lockdown was hard. The support we had from nurses and our oncologist changed.

‘It wasn’t their fault, the system was just under so much pressure that we had to manage largely on our own. I struggled to get the palliative care drugs mum needed and I spent a lot of time trying to find the right pain killers for her by driving to lots of pharmacies.

‘It made me panic to think that mum would be in pain if I couldn’t find what she needed.

‘We were offered some appointments over the phone but they were often late and my mum was so ill that we needed people helping us in the home. My dad’s cancer is terminal now.

‘I’m really worried that I will have the same struggles. Caring for my mum was a privilege but families need support.

‘We know that there is a pandemic but terminal illness is still happening, people are dying at home as well as in hospital, and it’s a really difficult thing to manage in normal times, let alone now. It’s horrendous.’

The findings of the survey, conducted in partnership with data and insights provider Dynata, were released alongside the charity’s inaugural Better End of Life report.

The report takes a comprehensive look at dying, death and bereavement during the pandemic, produced by independent researchers at King’s College London, Hull York Medical School, the University of Hull and the University of Cambridge.

During the pandemic, there was a sustained increase in the number of deaths at home, even outside of pandemic peaks with 40% more people dying in private homes overall.

The report says that the quality of palliative and end of life care across the UK was compromised due to it not being recognised as a frontline, essential service. This meant that palliative care teams struggled to access personal protective equipment (PPE), essential medicines and medical equipment.

Marie Curie has said that the last year has been a stress-test for community-based palliative care in homes and care homes. People with terminal illness have stayed away from hospitals to help protect the NHS but have not been able to get the help they need in the community.

The report finds that urgent action is needed to ensure our health and social care system is ready for the increased number of people dying in future – 100,000 more people a year are expected to die in 20 years’ time as the UK population ages.

In light of the report, Marie Curie is calling for a long-term settlement to ensure end of life care is sustainably funded, with a particular emphasis on ensuring people dying at home always receive the support they need.

Matthew Reed, chief executive of Marie Curie, said: ‘Many people will not be able to forget the deaths we have experienced this last year and it is vital that the government, local health and social care leaders, and providers learn vital lessons from the pandemic.

‘It’s heartbreaking to see that people dying at home, and their carers, struggled behind closed doors.

‘The government must now ensure that end of life care is seen as essential and not a forgotten after-thought. How the dying spend their final days lives on in the memory of the people who love them.

‘It is true that most people would choose to die at home but no one should be allowed to die in pain and without the essential care they need.

‘Today, we are calling for a long-term settlement to make sure end of life care is sustainably funded, with a particular emphasis on ensuring people dying at home always receive the support they need.

‘The Better End of Life research programme has never been more needed. In coming years it will help national and local decision-makers across the UK have the evidence they need in order to improve end of life experience for all.’

Professor Katherine Sleeman, from King’s College London and lead researcher on the Better End of Life Report said: ‘For people living with serious illnesses and approaching the end of life, the Covid-19 pandemic has had profound impacts.

‘Lockdown and social distancing have caused isolation and loneliness during a phase of life where relationships and human contact are of utmost importance.

‘Although there has been an intense focus during the pandemic on the number of people who have died, the impact on the care needs of these people and those who have been bereaved has received little scrutiny.

‘There was a sustained increase in deaths at home during the Covid-19 pandemic. However, without adequate support and care, dying at home may not be a positive experience.

‘Our report highlights how primary care professionals managed increased volume and increased complexity of palliative care for people in the community.

‘At the same time, hospices and palliative care teams made rapid innovations, adapting their services to support more people in their homes and care homes, as well educating and training wider health and social care professionals.

‘However, these teams experienced shortages of essential medicines and equipment meaning they could not always provide the care that was needed.

‘Everyone approaching the end of their life deserves the best possible care. The need for palliative care in the UK will increase over the next decades because of population ageing. We must ensure that palliative care services are resourced appropriately.’

A government spokesperson said: ‘We are incredibly grateful to the hospice sector for their invaluable contribution throughout the pandemic, both in continuing to deliver end of life care in challenging circumstances and for supporting the NHS.

‘Exceptions to restrictions, including on social distancing, indoor gatherings and visiting, were made for those receiving end of life care so their loved ones could continue to see and support them.

‘As part of the covid response, national grant funding was temporarily put in place for hospices to secure and increase NHS capacity. We also provided additional testing and will continue to provide free PPE for all those working in end of life care until the end of March 2022.’

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