Transcript NHS England Presentation Template

Why are we
here today?
A patient and carer
perspective
05/02/2015
Jay Sanchania, Worcestershire Association of Carers
Kate Branchett WMSCNS PV&I Lead
www.england.nhs.uk
Hi my name is Jay…
And I am a Carer…
www.england.nhs.uk
Hi my name is Jay…
• GP Carer Support Adviser
for End of Life
• Employed by
Worcestershire
Association of Carers
An independent source of
information and support for all
informal adult
carers across Worcestershire
www.england.nhs.uk
Intended Outcomes
• Improved carer confidence to manage supporting a dying
patient
• Improved health and wellbeing of carer
• Admission avoidance and reducing unwanted and reducing
length of hospital stays
• Support for contingency plans for legal and financial matters
• Use of/access to
on-going emotional
and practical
coping strategies
• Enable carers to
be equipped to
have meaningful,
www.england.nhs.uk
frank and open
Scene setting
• The patient and those significant others around them
are the only constant in their journey through a
sometimes fragmented health and social care system
• ‘One Chance to Get It Right’ and the 5 Priorities for
Care are rooted in the research and evaluation of
reported patient, carer and family experience from
many sources
• Focus of One Chance to Get It Right is rightly the last
days and hours of life
• However, ‘getting it right’ starts in the days, weeks,
months and even years before someone dies.
www.england.nhs.uk
“One of the barriers to improving care is a lack of
feedback from patients and their families about their
experiences and outcomes of care. Without this
information the NHS cannot properly plan great care
for all people who are terminally ill. Real-time,
electronic feedback, where it is possible, is a
powerful tool and needs to be used extensively in
hospitals, hospices, care home and care at home
services – this should be in place and used to drive
improvement across the whole of the UK”
Hospice UK, Briefing Paper: The crisis facing terminally ill people
and their families, September 2014
www.england.nhs.uk
Improve data to improve care
One Chance to Get It Right (2014)
Annex B: Responses to Individual Panel Recommendations – Recommendation 6 pp49-50
“The National Institute for Health Research fund should
fund research into the experience of dying. Research
priorities must extend also to systematic, qualitative and
mixed methods research into communication in the
patient and relative or carer experience.”
Still being considered.
Annex B: Responses to Individual Panel Recommendations – Recommendation 41
www.england.nhs.uk
Consistency of [data] collection was identified as an issue, both in social
care and specialist palliative care. Particularly in the voluntary sector, for
understandable reasons, priority has been given to investing in frontline
services not back-office functions. However, in the new environment,
services providing end of life care need to be able to evidence the value
of the services they provide in terms of measuring the benefits to people
in a cost-effective way. Currently much of the data collected in relation to
end of life care is about inputs and outputs. A vital challenge is the lack of
a universally recognised outcome measure, to enable an individual’s
quality and experience of care to be assessed and understood. This
would make it possible to tell whether people had a good experience and
benchmark services and localities accordingly. It could have a
transformative effect on the planning and commissioning of future
services, as well as on people’s quality of care.
http://spcare.bmj.com/content/early/2012/09/20/bmjspcare-2011-000055.abstractBMJ Support Palliat Care
doi:10.1136/bmjspcare-2011-000055 Research Measuring patients’ experiences with palliative care: the
Consumer Quality Index Palliative Care
www.england.nhs.uk
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Useful References
Hospice UK, Briefing Paper: The crisis facing terminally ill people and their families, September 2014
National Survey of Bereaved People (VOICES) 2013 – third survey results to be reported at Area Team level in
February 2015
http://www.palliativecareggc.org.uk/uploads/file/guidelines/SMoSH%20&%20Glasgow%20University%20Find%20a%20
Solution%20Audit%20Report%20-%20Living%20&%20Dying%20Well.pdf (Non-specialist provision)
http://www.newcastle-hospitals.org.uk/downloads/memberscouncil/MC%20Documents%20July%2011/11i_palliative_care_-_patient_and_carer_satisfaction_survey.pdf (Specialist
provision)
Gomes. B., and Higginson. I. “Where people die 1974-2030: past trends, future projections and implications for care”
Palliat Med 2008 22: 33 http://pmj.sagepub.com/cgi/content/abstract/22/1/33
More Care, Less Pathway: a review of the Liverpool Care Pathway
www.gov.uk/government/uploads/system/uploads/attachment_data/file/212450/Liverpool_Care_Pathway.pdf
National Bereavement Survey (VOICES), 2012 www.ons.gov.uk/ons/rel/subnational-health1/national-bereavementsurvey--voices-/2012/stb---national-bereavement-survey-2012.html
NICE, End of life care for adults http://guidance.nice.org.uk/QS13
Life after death: six steps to improve support in bereavement, NCPC, 2014
Does dying matter to England’s new Health and Wellbeing Boards?: Mapping England’s Health & Wellbeing Boards’
vision for people at the end of life, NCPC, 2012 and 2013 www.ncpc.org.uk/publication/does-dying-matterengland%E2%80%99s-new-health-and-wellbeing-boards
http://spcare.bmj.com/content/early/2012/09/20/bmjspcare-2011-000055.abstract BMJ Support Palliat Care
doi:10.1136/bmjspcare-2011-000055 Research Measuring patients’ experiences with palliative care: the
Consumer Quality Index Palliative Care Susanne J J Claessen1,2, Anneke L Francke1,2, Herman J Sixma2, Anke J
E de Veer2 and Luc Deliens1,3 BMJ Support Palliat Care doi:10.1136/bmjspcare-2013-000551 Research The practice
of palliative care from the perspective of patients and carers Cathy Sampson1, Ilora Finlay2, Anthony Byrne1,
Veronica Snow3 and Annmarie Nelson1” User involvement in EoLC: how involved can patients/carers be? Joanna
Black End of Life Care, 2008, Vol 2, No 4 http://endoflifejournal.stchristophers.org.uk/sites/default/files/articles/6469.Userinvolvement.pdf
http://www.palliativecareggc.org.uk/uploads/file/guidelines/SMoSH%20&%20Glasgow%20University%20Find%20a%20
www.england.nhs.uk
Solution%20Audit%20Report%20-%20Living%20&%20Dying%20Well.pdf
What does
the data
tell us?
www.england.nhs.uk
Patient reported quality of care
National Bereavement Survey (VOICES) 2012
•
The overall quality of care across all services in the last three months of life was
rated by 44% of respondents as outstanding or excellent
Overall Quality of Care in the last 3 months
9%
13%
14%
31%
Outstanding
Excellent
33%
Good
Fair
Poor
www.england.nhs.uk
Place of death
•
50% of people in the UK die in hospital
• Less than 5% say they want to die in hospital
Source: Hospice UK, Briefing Paper: The crisis facing terminally ill people and their families, September 2014
Preferred place of death
At home
8%
2%
7% 2%
In a hospice
In a hospital
81%
In a care home
Somewhere else
Source: National Bereavement Survey
(VOICES) 2012
‘I find it incredible that, in my experience and in the 21st century,
end
of life isn’t dealt with well in hospitals.’
www.england.nhs.uk
What stands in the way?
• Lack of knowledge
• Fear
• Demographics
• Some patients feel that they are not ‘allowed’ hospice care
• Lack of support
91% of people caring for someone at the end of life who
accessed the carer support service were White British
Source: Worcestershire Association of Carers SW CCG report 2014
www.england.nhs.uk
“In this Asian Hindu study, participants expressed a
universal preference for care at home, but had no
knowledge of palliative care services that could assist
them to achieve this preference. Despite a cultural
reluctance to ask for help, there was a remarkable
acceptance in principle of medical, practical and financial
help. It is imperative to recognise that in modern-day
western society this group may…need more from
palliative care and statutory services in the future, to
enable more people who wish to die at home to do so.”
‘End-of-life care for the British Asian Hindu community: preferences and solutions’, Sarah Frearson and Jane
Henderson with Bharti Raval, Charles Daniels, Geraldine Burke, Jonathan Koffman, End of Life Journal,
2013, Vol 3, No 3,
www.england.nhs.uk
‘The sustainability of home care is fragile
as spousal carers are of similar age as
the terminally ill care recipient and often
have their own health issues, which may
be exacerbated by the burden of their
caring responsibilities. Adult children who
are carers often have work commitments
and family responsibilities, which can
make the caregiving role a very stressful
experience.’
http://endoflifejournal.stchristophers.org.uk/research/knowledge-and-skillsneeded-by-informal-carers-to-look-after-terminally-ill-patients-at-home
www.england.nhs.uk
Diagnosis matters
National Bereavement Survey (VOICES) 2012
• Patients with a diagnosis of cancer are likely to report
more support and joined up care
Services worked well together (Other)
Services worked well together
(Cancer)
15%
40%
Yes, definitely
Yes, to some extent
45%
11%
Yes, definitely
38%
No, they did not work
well together
51%
Yes, to some extent
No, they did not work
well together
Services worked well together (CVD)
14%
41%
45%
Source: National Bereavement Survey (VOICES) 2012
www.england.nhs.uk
Yes, definitely
Yes, to some extent
No, they did not work
well together
Respect and dignity is variable
90
Were patients treated with respect and
dignity?
80
70
By district and community
nurses
By GPs
60
Staff at the care home
50
Hospital doctors
40
Hospital nurses
30
Hospice doctors
20
Hospice nurses
10
0
Always
www.england.nhs.uk
Mostly
Sometimes
Never
Source: National Bereavement
Survey (VOICES) 2012
What else does the data tell us?
National Bereavement Survey (VOICES) 2012
• Respondents of those who died of cancer in their own
home rated the quality of care most highly (63%).
• Two-thirds of respondents (64%) reported that no
decisions had been made about care which the patient
would not have wanted. However, 17% of respondents
said yes to this question.
‘“…support and advice have made such a big difference to
my life …helped me to work through the guilt feelings that
have been tearing me apart for years. I now understand
that I have to think of myself in order to continue to care for
my mum, my life and my own self- esteem is very
important”
www.england.nhs.uk
Effect of bereavement on families
and carers
• 47% of people report being bereaved within the last 5 years
• The annual cost of hospital stays following the death of a spouse is
somewhere between £150 and £190 million DOES NOT INCLUDE
ANY OTHER RELATIONS
• Funeral poverty – average shortfall in the cost of a funeral is £1277
• In 2012 less than half of bereaved relatives who wanted to talk about
their feelings to someone from a health, social care or bereavement
service were able to do so
• Over 87% of british adults agreed that all employers should have a
compassionate employment policy including paid bereavement
leave…but there is no statutory entitlement. Almost a third who had
been bereaved in the past five years said they were not treated with
compassion by their employer
• Source: Life After Death – Six steps to improve support in
bereavement, National Council for Palliative Care, National
Bereavement Alliance, Dying Matters, January 2014.
www.england.nhs.uk
Some revealing statistics…
10% of the
average GP
practice
population will
be carers
Carers save the
government
£119 billion
per year
www.england.nhs.uk
86% of family carers
are female
Carers are
twice as likely
to suffer
ill-health as
those not
providing care
1 in 5 carers
give up work to
care
What does the data tell us?
• Support is necessary
Responses in answer to the question: “What was the main thing that had changed for you at the time
you were identified as having palliative needs?”
Source: St Margaret of Scotland Hospice & University of Clasgow Audit Report: Audit of Living and Dying
Well based on Patient Experience of Non-Specialist Palliative Care, September 2012
www.england.nhs.uk
What stands in the way?
• Holistic, non-clinical issues are not always considered
• BUT THESE ARE ESSENTIAL TO THE PATIENT
AND THEIR FAMILY
Poor communication by the community nurse and the GP meant
we, as a family, became emotionally strained. Mum’s condition
was obviously deteriorating. She was anxious and afraid, yet no
one attempted to manage her emotional or spiritual concerns as
part of her care. All the practitioners involved in Mum’s care
appeared fearful of difficult conversations.
www.england.nhs.uk
Lack of a holistic approach
Patient perception of
whether they had been
asked by a healthcare
professional how
they were coping with
their palliative
holistic (physical,
emotional, social,
environmental, spiritual
and financial) needs.
Source: St Margaret of Scotland Hospice & University of Clasgow Audit Report: Audit of Living and Dying
Well based on Patient Experience of Non-Specialist Palliative Care, September 2012
www.england.nhs.uk
Support is out there
Patient perception of
whether they received
enough help or advice
to meet their
palliative holistic
(physical, emotional,
social, environmental,
spiritual and financial)
needs
Source: St Margaret of Scotland Hospice & University of Clasgow Audit Report: Audit of Living and Dying
www.england.nhs.uk
Well
based on Patient Experience of Non-Specialist Palliative Care, September 2012
“Not all carers found accessing information and
support as straightforward as they thought it would
have been. They did not always know to whom to turn
when they needed advice or help as there was no
consistency with regard to the health professionals
who visited them. The carers felt that they would have
benefited from a specific contact to answer their
questions…The carers felt that an assessment of their
knowledge and skills was required at the outset of
their role, and that they would have benefited from a
review at pertinent or appropriate intervals.”
http://endoflifejournal.stchristophers.org.uk/research/knowledge-and-skillsneeded-by-informal-carers-to-look-after-terminally-ill-patients-at-home
www.england.nhs.uk
What stands in the way?
• Lack of a consistent, informed point of contact where
shared decisions can be discussed and recorded
• Lack of awareness of family dynamics
Annex B: Responses to Individual Panel Recommendations – Recommendation 16 & 26
“……To be able to converse with someone who understood
what I was going through. I cannot speak highly enough of all
the help I received…Asking for help and accessing support
services was the biggest turning point in my life as a carer.””
Source: Worcestershire Association of Carers, Evaluation of End of Life Carer Support Service, 2014
www.england.nhs.uk
What stands in the way?
• Finances
• Patient may be main breadwinner
• Continuing Health Care
• Who takes responsibility for information and support?
www.england.nhs.uk
What stands in the way?
• Links between health and social care
The carer states that the hospital team did not offer any follow-up
support in the community after her husband’s discharge, and she
is finding her husband’s attitude towards his diagnosis and
prognosis very difficult to cope with.
‘It was left to us, as a family, to request the loan of a medical
magnet from our local hospice. We had to make our own
arrangements for collection of this device (by taxi – at our
expense) and arrange for return of same after my husband’s
death’
www.england.nhs.uk
Language and communication
• The amount of information a patient or their family
wants to know will depend on the individual
•
•
Annex B: Responses to Individual Panel Recommendations – Recommendation 1 & 2 & 30
Annex B: Responses to Individual Panel Recommendations – Recommendation 8 & 9 & 11
PROGNOSIS and UNCERTAINTY
• Honest, layman’s terms
‘The doctor spoke to me and my brother in a way we could
understand. I felt like he actually got what was going on, you
know? He was kind and took the time to explain things, even
though he must have been really busy. His kind smile and gentle
way with us and my mum especially will stay with me forever.’
www.england.nhs.uk
Importance of a consistent multidisciplinary approach in primary care
• Multi-disciplinary community provision is not
consistent
Annex B: Responses to Individual Panel Recommendations – Recommendation
11&12&13
‘I’m in touch with loads of people, there’s the local GP, who I’ve
had a lot of contact with, he’s popped around a few times, he’s
been really, really good. There’s the district nurses that have
been popping in every day, I think I’ve met the whole team now.
There’s the physiotherapist who’s brilliant and gave me a lot of
confidence, I didn’t stand up until she came...and Macmillan
nurses have been in touch’
www.england.nhs.uk
What stands in the way?
• Variation in GP Surgeries
• Gold Standards Framework and implementation
Patients’ experience of receiving GSF-led primary palliative care Sarah Kelt, Daniel Munday,
Jeremy Dale, End of Life Care, 2008, Vol 2, No 4
• Record keeping
• Community teams – relationships and ways of working
“The role was extended very quickly and the End of Life Carer
Support Adviser was asked to attend the Palliative Care Meetings;
she became involved as this was her particular area of expertise.
Again we have had very positive feedback from patients and
clinicians.”
www.england.nhs.uk
What stands in the way?
• Advanced planning is patchy (if it is practiced, experiences are
generally reported as more positive)
Annex B: Responses to Individual Panel Recommendations –
Recommendation 38
Source: St Margaret of Scotland Hospice & University of Clasgow Audit Report: Audit of Living and Dying
Well based on Patient Experience of Non-Specialist Palliative Care, September 2012
www.england.nhs.uk
What stands in the way?
• Inadequate out of hours provision
Annex B: Responses to Individual Panel Recommendations – Recommendation 14 & 33
Standard of care when needed urgently in
the evenings or weekends in the last
three months of life
15%
27%
Excellent
20%
Good
38%
Fair
Poor
Source: National Bereavement Survey (VOICES) 2012
www.england.nhs.uk
‘We really want to bypass A&E,
basically, but the system doesn’t
allow you to do that. So we tried
the Clinical Nurse Specialist
thinking that this would enable us
to be fast tracked. But we went
into A&E and in actual fact it
happened in reverse although we
told the paramedics and the nurse
who was dealing with us when we
went into A&E. We weren’t treated
as a priority, we were treated less
of a priority than if we’d gone in
under a 999 call’
What stands in the way?
• Lack of appropriate training, skills and knowledge
Annex B: Responses to Individual Panel Recommendations – Recommendation 14 & 33
www.england.nhs.uk
Transition from hospital to
community care
Annex B: Responses to Individual Panel Recommendations – Recommendation 16 & 26 & 31
Hospital services worked well together
with GPs and other services outside of
the hospital
Yes,
definitely
31%
33%
Yes, to
some extent
36%
No, they did
not work
well
together
www.england.nhs.uk
‘‘However as it was by
now the weekend we
were informed that any
equipment required at
home could not be
provided until the
following Monday.”
Source: More Care, Less Pathway: a review of
the Liverpool Care Pathway
www.gov.uk/government/uploads/system/upload
s/attachment_data/file/212450/Liverpool_Care_
Pathway.pdf
In conclusion
• Data is key to improving services
• Networking and the sharing of best practice will help
to ensure that patients, families and carers across the
West Midlands receive the best possible care
• Focus of One Chance to Get It Right is rightly the last
days and hours of life
• However, ‘getting it right’ starts in the days, weeks,
months and even years before someone dies
• Helping families, carers and the patient themselves
to prepare is crucial to a positive experience
www.england.nhs.uk
Thank you for listening
Any questions?
[email protected]
@carersworcs
[email protected]
@katebranchett
@wmscn
www.england.nhs.uk