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Digital records ‘to transform end of life’

Digital records ‘to transform end of life’

Compassion in Dying | Compassion in Dying

3 min read Partner content

Norman Lamb has said the NHS must deliver “high quality personalised care” at the end of life.

The minister for care and support was speaking at the launch of Compassion in Dying’s project ‘My Life, My Decision’.

Compassion in Dyingis a national charity that supports people at the end of life to have what they consider to be a good death by providing information and support around their rights and choices.

It is leading provider of free Advance Decisions in the UK and conducts and reviews research into rights and choices in end-of-life care.

Lamb said the new Electronic Palliative Care Co-ordination Systems (EPaCCS) which is being rolled out across the country will transform the way people can record their end of life care choices, such as whether they want to be resuscitated.

The new system will be used by 70% of Clinical Commissioning Groups by April, the minister said, but he wants the rollout to continue beyond that.

Electronic records of end of life care should stop “awful mistakes” where people have been treated against their wishes by NHS staff. The electronic records will allow a range of NHS professionals across the country to see what someone’s palliative care choices are.

“The NHS constitution says patients should be involved in all discussions and decisions including at the end of life,” Lamb said.

“We can and we must create a culture where decisions about care are made in accordance with a person’s need.

“We must be sensitive when talking to a person who is dying and their loved ones.

“It is our collective responsibility - all of us - to make it possible for people who may no longer be able to make their wishes known to still receive high quality individualised care delivered with compassion and respect.”

Lamb also touched on the Mental Capacity Act in his speech, which was reviewed by a Lords committee earlier this year.

The minister said he was “mindful” of the committee’s concerns, such as that the empowering ethos of the Act has not been widely implemented and capacity is not always assumed when it should be.

“Deprivation of liberty safeguard assessments can lead to a less restricted more person-centred care,” he said.

“There is a real concern around the bureaucracy.”

Compassion in Dying’s ‘My Life, My Decision’ supports older people to ensure their wishes for treatment and care are known and respected. The project is funded by the Big Lottery Silver Dreams Fund.

It provides one-to-one support to help explore their options to plan ahead and to complete the necessary paperwork with local Age UK partners in East London, Hillingdon, Oxfordshire, Lancashire, South Lakeland, South Tyneside and Trafford.

The project aims to raise awareness of end of life rights amongst older people and their communities and deliver accredited training to professionals, volunteers and community groups.


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