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End of life services to be improved in Cambridgeshire after concerns about dying decisions in first wave of pandemic

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Better end of life care is planned for people in Cambridgeshire and Peterborough after a health watchdog intervened and called for action.

Improvements have been promised by the local NHS after health and care champions Healthwatch Cambridgeshire and Healthwatch Peterborough raised concerns and called for action.

It passed on feedback that some people's decisions about their care and treatment at the end of life were not listened to during the first wave of Covid in 2020.

Val Moore, chair of Healthwatch Cambridgeshire and Peterborough. (47141414)
Val Moore, chair of Healthwatch Cambridgeshire and Peterborough. (47141414)

And in December, it wrote to the Clinical Commissioning Group (CCG) which plans and pays for health services in our area, asking for:

 recognition of the need to improve end of life care

 more conversations with local people and clinicians to understand what matters most to people near the end of their life

 the ReSPECT form, developed by the Resuscitation Council UK, to be part of discussions with people

 better training and information for staff supporting those near the end of their life.

Now, the CCG has responded and confirmed a new group will also be set up to oversee and embed improvements.

This will include benchmarking the use of ReSPECT across Cambridgeshire and Peterborough, improving staff training and communication in care settings and raise awareness of people’s end of their life needs and wishes.

The group will include Val Moore, Chair of Healthwatch, which represents and helps patients and health and care service users to speak up and share their views.

What people told Healthwatch …

“The only time the GP has got in touch with my friend is to make her sign a DNR

(Do Not Resuscitate)."

"ReSPECT forms (Recommended Summary Plans for Emergency Care and Treatment) suddenly done on phone at start of pandemic wasn’t nice at all! Should have been sent a warning letter to prepare!"

In an emergency, people cannot always make decisions about their priorities for care, so talking in advance about what they would want to happen is important.

ReSPECT is a plan for a person’s emergency care and treatment. It looks at their personal preferences in terms of balancing decisions about saving their life against being comfortable.

Any decisions should be made in consultation with the individual, or an appropriate representative, taking into account their wishes and needs.

The CCG told Healthwatch that all providers of services, including GPs and care homes, did need to make sure that any ReSPECT or ‘do not resuscitate’ (DNR) decisions and wishes were in place, and up to date, at the start of the pandemic.

And that it worked with all their providers of services to raise awareness and provide training on ReSPECT. This was both before, and again at the very start, of the COVID-19 pandemic, to ensure that no blanket decisions ‘not to resuscitate’ were made by care providers.

However, good work in making sure people were involved in decisions about dying, dropped off during the first wave of the pandemic. This is because the use of ReSPECT was not properly embedded.

As a result, Healthwatch is worried that people affected by this will be older and disabled people from poorer communities and those without someone to speak up for them.

Val Moore said: “It is sobering to contemplate that the gap in health inequalities may get ever larger in times of emergency or end of life care if better decision making is not embedded.”

As part of raising its concerns, Healthwatch also contributed to a Care Quality Commission (CQC) review into the use of DNACPRs (Do Not Attempt Cardiopulmonary Resuscitation) decisions.

Our area was one of seven reviewed by the independent regulator.

The CQC’s report ‘Protect, respect, connect – decisions about living and dying well during COVID-19’, was published in February. And it found a worrying variation in people’s experiences of resuscitation decisions. The CCG’s new task group will also take action on findings from the CQC report.

Healthwatch says more needs to be done in care settings across Cambridgeshire and Peterborough to make sure people understand the choices they have and that their wishes are respected at the end of life.

Work was done to tackle poor practice last year, for example Cambridgeshire County Council and Peterborough City Council took supportive action with some care homes.

The new group is going to write a strategy that all health and care service providers sign up to.

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