Newcastle North MP challenges Government on end of life care

Catherine McKinnell, MP for Newcastle North and Co-Chair of the All-Party Parliamentary Group (APPG) on Children Who Need Palliative Care, has today challenged the Government on the lack of progress made being made on improving end of life care, for both children and adults.

In July 2016, the Government published its national commitment on end of life care, setting out that – by 2020 – ‘as you approach the end of life, you should be given the opportunity and support to:

  • have honest discussions about your needs and preferences for your physical, mental and spiritual wellbeing, so that you can live well until you die;
  • make informed choices about your care, supported by clear and accessible published information on quality and choice in end of life care; this includes listening to the voices of children and young people about their own needs in end of life care, and not just the voices of their carers, parents and families;
  • develop and document a personalised care plan, based on what matters to you and your needs and preferences, including any advance decisions and your views about where you want to be cared for and where you want to die, and to review and revise this plan throughout the duration of your illness;
  • share your personalised care plan with your care professionals, enabling them to take account of your wishes and choices in the care and support they provide, and be able to provide feedback to improve care;
  • involve, to the extent that you wish, your family, carers and those important to you in discussions about, and the delivery of, your care, and to give them the opportunity to provide feedback about your care; and
  • know who to contact if you need help and advice at any time, helping to ensure that your personalised care is delivered in a seamless way.’

However, one year after the publication of this commitment, a number of leading health charities have raised their serious concerns about the ‘disappointing lack of progress’ made on achieving the commitment; on the continued underfunding of services essential to supporting patient choice at the end of life; and regarding the postcode lottery in end of life care still faced by thousands of people, and their families, across the country.

Speaking during questions to Health Ministers in the Commons this morning, Catherine said:

‘The End of Life Care Coalition have said they remain deeply concerned about the enduring gap in resources for community-based health and social care services.

‘Meanwhile, Together for Short Lives continue to highlight the unacceptable postcode lottery faced by the 40,000 children in England with life-limiting conditions.

‘So what is the Minister doing to ensure that all CCGs (Clinical Commissioning Groups) and STPs (Sustainability and Transformation Plans) will meet the requirements of the Government in full – for both children and adults – by 2020?’

Commenting afterwards, Catherine stated:

‘We all want to think that, as we – and our loved ones – reach the end of our lives, we will have the right care and support available to enable us to die in the place of our choosing.

‘Yet, it’s estimated that since the Government published its commitment on improving end of life care, some 230,000 people have died in hospital – many of whom without wanting to do so, or having a medical need to be there.

‘Good end of life and palliative care helps to ensure that people’s quality of life is the best it can be in its final stages. Fortunately, many people will experience this and that’s often due to the vital services provided by charities like Marie Curie, Macmillan and local hospices.

‘However, far too many people do not receive the care and support they need simply because of where they live, and the Government must step up progress towards achieving its commitments on this issue.’

As well as being a member of the APPG, Catherine’s question today follows her ongoing work with the charity Marie Curie including a debate she led on palliative care for people with terminal illness towards the end of last year.