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Dying Matters Awareness Week

Policy and Insight Officer

This week (8-14 May) is Dying Matters Awareness Week, a week of events and campaigns, led by the Dying Matters Coalition. It aims to place the importance of talking about dying, death and bereavement firmly on the national agenda.

This year the theme for the week is "What can you do?" and Dying Matters asks us to think about how we can make the end of life experience better, both for those dying and for their loved ones. The findings from our Dying without Dignity report can help answer this.

Dying without Dignity: Failings in end of life care

Poor end of life care is, sadly, a recurring and consistent theme in our casework.

Two years ago we published the Dying without Dignity report which identified six areas where end of life care was failing in England:

  1. Not recognising that people are dying, and not responding to their needs.

  2. Poor symptom control.

  3. Poor communication.

  4. Inadequate out-of-hours services.

  5. Poor care planning.

  6. Delays in diagnosis and referrals for treatment.

Progress towards improving end of life care

Since we published the report, there has been increasing support from charities, academics and the Government to improve end of life care.

In June 2015 Baroness Finlay of Llandaff introduced the Access to Palliative Care Bill which makes provision for equitable access to palliative care services. It also provides for advancing education, training and research in palliative care. The Bill received overwhelming support in the House of Lords,and we hope it will continue to progress through Parliament.

In July 2016, the Government published their report, Our commitment to you for end of life care. The report makes six commitments to end variation in palliative care provision across the health system by 2020, by supporting people approaching the end of their lives to:

  • have honest discussions with care professionals about their needs and preferences

  • make informed choices about their care

  • develop and document a personalised care plan

  • discuss their personalised care plans with care professionals

  • involve their family, carers and those important to them in all aspects of their care as much as they want

  • know who to contact for help and advice at any time.

With the upcoming general election, the progress of this commitment is somewhat uncertain. Nevertheless, it marks a significant step towards nationwide improvement in end of life care.

End of life care remains a postcode lottery

More recently, in February 2017 the British Medical Journal Supportive and Palliative Care published new research on end of life care. The research revealed that Clinical Commissioning Groups (CCGs) are not using standardised information about their population to commission services and that there is confusion about who is responsible for service provision. This means patient choice at the end of life cannot always be honoured, creating a ‘postcode lottery’.

A subsequent debate in the House of Lords on 1 March called for the Government to keep moving forward with its commitment, and to ensure that end of life care remains central to national and local health planning.

Why is Dying Matters Awareness week so important?

Since the publication of the Dying without Dignity report, in 2016 we upheld 83 complaints on end of life care. This compares to 74 complaints in 2015 and 71 in 2014. It is evident that variation in the quality of end of life care still exists, and it is vital that charities, parliamentarians and arms-length bodies continue to keep improved end of life care on the agenda, and hold Government to account for its commitment.

Dying Matters Awareness Week is important because it encourages people to talk about their wishes towards the end of their lives, including where they want to die and how they would like to be cared for. These conversations can help improve the quality and range of support and care services available to people, and increase the support network for those bereaved.

Visit the Dying Matters website for ideas of what you can do now to improve end of life care. You can also follow what’s going on during Dying Matters Awareness week on Twitter using the hashtag #WhatCanYouDo.