End of Life Care, which had sat in the Medical Directorate at NHS England (NHSE), has moved into the Personalised Care Group of Programmes which feels just right. We are failing as a sector if we don’t try to make sure people and their families receive personalised care at such a fundamental point in someone’s life. Choice is a thread running through their programme of work.
Professor Bee Wee took us through the overarching structure this group of Programmes is using. On a population basis the assumption is that around 5% of the population have the most complex needs and will need specialist input. Another 30% will need a targeted offer to meet their needs and the rest are likely to have their needs met by a universal offer. People must be able to move through these categories freely as needs change. This segmentation is an interesting way to look at end of life care and instinctively seemed to chime with what we see in our day to day work. Related to this was some discussion around evidence that earlier intervention saves money by reducing admissions. So targeting care and support for that middle 30% or so might have an impact on the proportion of deaths where there have been 3 emergency admissions in the last 90 days of life. How should the palliative care community respond to this?
So when we use this structure to consider end of life care what should the universal offer look like? Bee suggested 3 things. Firstly, that a person is recognised or identified as having end of life needs and/ or is deteriorating. Secondly that they and their family receive personalised support. Thirdly that they always experience good care, wherever it is delivered. Again I am sure no one would argue with this and of course it is just a slightly different way of describing the Ambitions Framework, which is good news!
Rightly NHSE need to be able to demonstrate progress in this area. It is likely that the measure for end of life care in the NHSE mandate is around increasing the number of people identified as being likely to be or are in the last year of their life. If we don’t identify people who are dying or are likely to die they won’t receive personalised care, according to their needs and preferences, or the support they need. We suggested it would be great to include identifying the needs of carers in the mandate. At Marie Curie we have recently funded some research into the needs and expectations of carers. Not surprisingly it showed that absence of carers or carers too exhausted to carry on will almost certainly trigger a hospital or hospice admission. Interestingly though the research also showed carers had unrealistic expectations of what was available to help them in terms of community and other services. Their expectations were based on, and set by, health professionals who perhaps found it difficult to be totally honest about the reality. This is clearly unhelpful for everyone not least the carers. And I imagine we would all agree that on the whole families and carers have realistic and modest expectations, unless they are led to believe that more is available.
Returning to personalised care there did seem to be some good news from National Voices in that people are reporting improved quality of communications by clinicians, improved involvement in decisions and to feeling more in control. All essential for personalised care. But there is little evidence of planning, coordination or support of families so still a way to go.
GP surgeries will now be able to display a ‘daffodil mark’ as a sign of commitment to improving end of life care, as part of a new partnership between the Royal College of GPs and the terminal illness charity Marie Curie.
The mark, synonymous with the charity, is based on a new set of criteria called the Daffodil Standards – a set of eight quality improvement statements designed to support primary care teams in delivering care to patients living with an advanced, serious illness or at the end of their lives, and their loved ones.
By adopting the Standards, GP practices commit to making improvements in at least three of eight core aspects of care each year, with the aim of having reviewed all of them after three years.
The eight Daffodil Standards are:
Professional and competent staff
Early identification of patients and carers
Carer support – before and after death
Seamless, planned, co-ordinated care
Assessment of unique needs of the patient
Quality care during the last days of life
Care after death
General practices being hubs within compassionate communities
To coincide with the launch, a new ComRes survey1 showed that 92% of GPs agree it is important for them to spend time caring for terminally ill or dying patients, and another 87% say that caring for terminally ill or dying patients is a rewarding part of their job.
However, it also revealed that more than four in five (85%) GPs say that they do not have as much time as they would like to care for terminally ill or dying patients because of their workload.
Three in five (62%) disagree that there are enough community resources to give families and carers of terminally ill or dying patients the emotional support that they need.
The Standards fall back on the fundamental values of general practice being hubs within ‘compassionate communities’, which includes considering staff emotional support needs after their patients die.
According to the survey, seven in ten (71%) GPs agree that there should be more resources available to help GPs and practice staff with the grief of losing patients, with just 2% saying their practice holds formal support sessions on dealing with grief and loss.
And three in five (59%) say that their practice does not organise ways for the staff to share stories or get support for dealing with grief and loss.
The Standards, which have already been recognised by the new Quality and Outcomes Framework (QOF)2 on end of life care and the CQC3, have been piloted by a number of surgeries across the UK, and each Standard comes with its own evidence-based tools, exercises and quality improvement steps.
Dr Catherine Millington-Sanders, End of Life Care Lead at RCGP and Marie Curie, said: “GPs are central to providing excellent end of life care, and we know how much patients and their families value being able to have an open conversation with their doctor about what lies ahead.
“Our colleagues are already working hard to provide this level of care, but pressures on our system and a lack of resources in the community can sometimes make going the extra mile that bit harder, which can be incredibly frustrating for us and our teams.
“That’s why the RCGP and Marie Curie have developed these Standards. Most importantly, they are there to ensure that when patients see the ‘daffodil mark’ in our window or on the wall in our waiting rooms, they know we are committed to providing the care and support they need and deserve.”
Professor Helen Stokes-Lampard, Chair of the Royal College of GPs, added: “Making sure that patients and their families feel supported at the end of life is an essential part of what we do, and in many ways, one of the most privileged aspects of our role.
“The demand on GPs and their teams to provide high-quality palliative care is only set to rise as our population continues to age and we begin to see more patients present with more complex, long-term conditions.
“We’re delighted to be able to launch these Standards with Marie Curie and hope they go a long way in supporting GPs, their teams, and, of course, our patients, but current pressures on our service and the effects they are having on our ability to consistently provide high-quality palliative care cannot be ignored.
“That’s why it’s essential that the pledges for more investment for general practice and for more GPs and practice staff, made in NHS England’s GP Forward View and the NHS long-term plan are delivered urgently and in full.”
Dr Jane Collins, Chief Executive of Marie Curie, said: “From talking to families we know that GPs and practice staff make such a difference to how patients and families experience end of life care. Having someone they can go to who they know well, trust, and help them prepare for the future, is vitally important at such a difficult time. It is also clear from the survey findings that GPs recognise how important their role is and how rewarding they find this part of their work.
“The new Standards will play a key role in excellent end of life care and ensure that busy GPs and practice staff have the support they need to improve the quality of care provided. It has been a real privilege working with the RCGP on the development of the Daffodil Standards.”
1 ComRes interviewed 1,005 GPs online between 14th – 31st January 2019. Data were weighted to be demographically representative of all GPs by former SHA region. ComRes is a member of the British Polling Council and abides by its rules. More information on the survey can be found on ComRes’ website in the published polls section.
2The QOF is a voluntary reward and incentive programme. It rewards GP practices, in England for the quality of care they provide to their patients and helps standardise improvements in the delivery of primary care.
3 The CQC welcomes the Daffodil Standards in providing a framework for evidence collection which practices will be able to use to demonstrate the quality of end of life care that they provide.
For the RCGP press office, please call 020 3188 7633/7574/7575 or email [email protected] Out of hours: 0203 188 7659
The Royal College of General Practitioners is a network of more than 52,000 family doctors working to improve care for patients. We work to encourage and maintain the highest standards of general medical practice and act as the voice of GPs on education, training, research and clinical standards.
For the Marie Curie press office, please contact Tracy Barrett on 07794 637761 or at [email protected]
Please note – we are now called ‘Marie Curie’ (not Marie Curie Cancer Care)
Marie Curie is the UK’s leading charity for people with any terminal illness. The charity helps people living with a terminal illness and their families make the most of the time they have together by delivering expert hands-on care, emotional support, research and guidance. Marie Curie employs more than 2,700 nurses, doctors and other healthcare professionals, and with its nine hospices around the UK, is the largest provider of hospice beds outside the NHS.
If you are in need of support, or have any questions about any aspect of terminal illness, call the Marie Curie Information & Support Line free on 0800 090 2309 or visit www.mariecurie.org.uk/help
National framework for action urges local leadership to be at forefront of improvement in end of life care.
The National Palliative and End of Life Care Partnership, made up of statutory bodies including NHS England, the Association of Adult Social Services, charities and groups representing patients and professionals has developed a framework for action in making palliative and end of life care a priority at local level.