End of life and palliative care in Wales – where are we now?

by Natasha Wynne
Policy and Public Affairs Assistant, Wales

Natasha Wynne, Policy and Public Affairs Assistant, Wales

This week, the Welsh Government published its first all-Wales End of Life Care Delivery Plan Annual Report, which tracks how well it is doing against outcomes set out in the delivery plan published in April 2013. The report brings together national and local level information about end of life services and will play an important role in driving forward future improvements.

As the report shows, there are some great examples of best practice in Wales: Families and patients who have used the iWantGreatCare survey to feedback on the specialist palliative care they receive rate this care very positively, there is important work taking place around Advanced Care Planning and the recent launch of Byw Nawr – the sister initiative to Dying Matters in England – provides a real opportunity to help people plan and have open conversations about their wishes at the end of life.

A long way to go

However, we still have a long way to go before we are close to achieving the Welsh Government’s aim for palliative and end of life care, which is that People who are dying in Wales should have access to high-quality care wherever they live and die, whatever their underlying disease or disability.”  

The report identifies a number of areas which require improvement. These include:

  • Earlier idenitification of patients who are probably in their last year of life so that they can receive earlier support from primary care teams

  • Ensuring that systems are in place to allow more people to receive care and die in the place of their choice

  • Reducing unnecessary emergency admissions for those at the end of their lives through effective advanced care planning

One problem we have in Wales is that we just don’t have enough of the right data and information to understand the needs and experiences of people at the end of life. iWantGreatCare surveys can only tell us so much. Moreover, they only tell us about those who are in receipt of specialist palliative care services. Although 75% of the 32,000 people who die in Wales each year will have palliative care needs, the report confirms that only a fraction of that number receive this care. In particular, people with a terminal condition other than cancer are not accessing the services they need. We also know that more people are dying in hospitals than want or need to be there.

A better understanding of people's experiences

To really understand people’s experience at both an individual and national level we need to use a variety of methods, as the Welsh Government sets out in its Framework for Assuring Service User Experience (2013). This is why Marie Curie has called for the introduction of a VOICES-style survey of the bereaved, which is currently being used in England to help improve services across geographical areas and across different personal characteristics.

Everyone involved in providing care and support for terminally ill people and their families in Wales must build on the information gathered in the report and continue to develop a strong national evidence base so we can identify the gaps in current provision and make services truly person-centred. It is also essential that the NHS and local authorities work effectively with the voluntary sector and other partners from different sectors to ensure people get the care that’s right for them, at the right time, in the right place.