Dying Matters Awareness Week

May 3, 2022

Communities across the country will come together this week to talk about death, dying and grief, in recognition of Dying Matters Awareness Week.

Since the start of the pandemic, it is estimated that almost 67,000 people have died at home without access to specialist care. Hospice UK and Dying Matters have been calling for the Government to give end of life care ‘the attention it deserves.’

Maureen, whose parents both died at home during the pandemic, tells her story in the official campaign film and explains why she's taking action this Dying Matters Awareness Week.

In the summer of 2020, Maureen moved from London to Birmingham to care for her parents as they were discharged from hospital to die. ‘It seems very old fashioned, but we had them in the living room,’ said Maureen.

Hospice UK said that for many, dying at home is seen as a preferable choice. But the health system is struggling to keep up, and we know that many thousands of people, like Maureen’s parents, may have been at home without the pain relief, symptom management, emotional and practical support they need. ‘There is inconsistent community support from the NHS and the care agency,’ she explains. ‘We read on the discharge letter that mum was end of life - no one told us despite speaking to the hospital every day whilst she was there. She wasn’t sent home with any end of life medication. There were no incontinence pads, there was no food.’

Hospice UK says people are dying without the emotional and practical support they need but acknowledge that health and social care staff are doing their absolute best in the hardest of circumstances, but often finding themselves without the specialist knowledge or capacity to look after a dying patient, and their family. The charity is urging people to:

  • Help us make sure that the health and care system is properly set up to support people at the end of their lives.
  • Help us show political and healthcare leaders what is needed to make our end of life care system work for families across the UK.
  • Help us get the UK talking about and planning for end of life.

This year, Hospice UK is continuing its work on being #InAGoodPlace when you die and is urging people use the hashtag and to write to their MP.

On 6th April, a cross party group of Members of Parliament and the Senedd, including Baroness Finlay of Llandaff, Paul Maynard MP, Robert Halfon MP and Rachael Maskell MP and charities such as Marie Curie, Age UK and the Alzheimer’s Society backed Hospice UK’s called for the terms of reference to be amended in a letter to the inquiry’s chair, Baroness Hallett.

Dominic Carter, Head of Policy at Hospice UK, said, ‘The numbers of people dying at home presents a very real challenge for our health and care system. Through our Dying Matters campaign, we’ve heard stories of very poor care and quite distressing experiences. We know how hard staff have worked, and we applaud their dedication and compassion – but we believe they need better support.

Adding, ‘The Inquiry is an opportunity not just to examine what has happened in the past two years, but to help find solutions to a challenge that is not going away. Our ageing population and increasing complexity of illnesses mean that many more people will die at home in the future. It’s therefore vital to make sure the right support is in place in the community, and that staff have the right skills to support people with pain relief, symptom management, emotional and practical support.’

48 MPs, Peers and Members of the Senedd have supported Hospice UK’s call, along with 31 charities and other institutions.

Talking about death and dying can be tough. Hospice UK’s resources may help you, your family and friends to start the conversation.

In other news, the National Care Forum (NCF) is launching dedicated resources to help social care providers prepare for Integrated Care Systems (ICS).

 


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