www.england.nhs.uk why are we here today? a patient and carer perspective 05/02/2015 jay sanchania,...
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www.england.nhs.uk
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
And I am a Carer…
Hi my name is Jay…
www.england.nhs.uk
• GP Carer Support Adviser for End of Life
• Employed by Worcestershire Association of Carers
Hi my name is Jay…
An independent source ofinformation and support for all
informal adultcarers 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, frank and open discussions relating to death
www.england.nhs.uk
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
Hospice UK, Briefing Paper: The crisis facing terminally ill people and their families, September 2014
“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”
www.england.nhs.uk
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
Improve data to improve care
www.england.nhs.uk
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
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.
www.england.nhs.uk
• 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%2
0Solution%20Audit%20Report%20-%20Living%20&%20Dying%20Well.pdf (Non-specialist provision)
• http://www.newcastle-hospitals.org.uk/downloads/members-council/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-bereavement-survey--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-matter-england%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/64-69.Userinvolvement.pdf
• http://www.palliativecareggc.org.uk/uploads/file/guidelines/SMoSH%20&%20Glasgow%20University%20Find%20a%20Solution%20Audit%20Report%20-%20Living%20&%20Dying%20Well.pdf
Useful References
www.england.nhs.uk
What does the data tell us?
www.england.nhs.uk
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
Patient reported quality of care
13%
31%
34%
14%
9%
Overall Quality of Care in the last 3 months
Outstanding
Excellent
Good
Fair
Poor
www.england.nhs.uk
• 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
Place of death
‘I find it incredible that, in my experience and in the 21st century, end of life isn’t dealt with well in hospitals.’
81%
8%2%
7% 2%
Preferred place of death
At home
In a hospice
In a hospital
In a care home
Somewhere else
Source: National Bereavement Survey (VOICES) 2012
www.england.nhs.uk
• Lack of knowledge• Fear• Demographics
• Some patients feel that they are not ‘allowed’ hospice care
• Lack of support
Source: Worcestershire Association of Carers SW CCG report 2014
What stands in the way?
91% of people caring for someone at the end of life who accessed the carer support service were White British
www.england.nhs.uk
‘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,
“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.”
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-skills-needed-by-informal-carers-to-look-after-terminally-ill-patients-at-home
www.england.nhs.uk
Diagnosis mattersNational Bereavement Survey (VOICES) 2012• Patients with a diagnosis of cancer are likely to report
more support and joined up care
51%38%
12%
Services worked well together (Cancer)
Yes, definitely
Yes, to some extent
No, they did not work well together
40%
45%
15%
Services worked well together (Other)
Yes, definitely
Yes, to some extent
No, they did not work well together
42%
45%
14%
Services worked well together (CVD)
Yes, definitely
Yes, to some extent
No, they did not work well together
Source: National Bereavement Survey (VOICES) 2012
www.england.nhs.ukAlways Mostly Sometimes Never0
10
20
30
40
50
60
70
80
90
By district and community nursesBy GPsStaff at the care homeHospital doctorsHospital nursesHospice doctorsHospice nurses
Source: National Bereavement Survey (VOICES) 2012
Were patients treated with respect and dig-nity?
Respect and dignity is variable
www.england.nhs.uk
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.
What else does the data tell us?
‘“…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
• 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.
Effect of bereavement on families and carers
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
1 in 5 carers give up work to
care
Carers are twice as likely
to suffer ill-health as those not
providing care86% of family carers are female
www.england.nhs.uk
• 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?”
What does the data tell us?
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
• Holistic, non-clinical issues are not always considered• BUT THESE ARE ESSENTIAL TO THE PATIENT
AND THEIR FAMILY
What stands in the way?
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 approachPatient perception of whether they had been asked by a healthcare professional how they were coping with their palliativeholistic (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 therePatient 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 Well based on Patient Experience of Non-Specialist Palliative Care, September 2012
www.england.nhs.uk
http://endoflifejournal.stchristophers.org.uk/research/knowledge-and-skills-needed-by-informal-carers-to-look-after-terminally-ill-patients-at-home
“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.”
www.england.nhs.uk
• 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
What stands in the way?
“……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
• Finances• Patient may be main breadwinner• Continuing Health Care• Who takes responsibility for information and support?
What stands in the way?
www.england.nhs.uk
• Links between health and social care
What stands in the way?
‘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 ourexpense) and arrange for return of same after my husband’s death’
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.
www.england.nhs.uk
• 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
Language and communication
‘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
• Multi-disciplinary community provision is not consistent
Annex B: Responses to Individual Panel Recommendations – Recommendation 11&12&13
Importance of a consistent multi-disciplinary approach in primary care
‘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’sbeen 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 Macmillannurses have been in touch’
www.england.nhs.uk
• Variation in GP Surgeries• Gold Standards Framework and implementationPatients’ 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
What stands in the way?
“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
• Advanced planning is patchy (if it is practiced, experiences are generally reported as more positive)
Annex B: Responses to Individual Panel Recommendations – Recommendation 38
What stands in the way?
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 provisionAnnex B: Responses to Individual Panel Recommendations – Recommendation 14 & 33
27%
38%
20%
15%
Standard of care when needed urgently in the evenings or weekends in the last
three months of life
Excellent
Good
Fair
Poor
‘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’
Source: National Bereavement Survey (VOICES) 2012
www.england.nhs.uk
• Lack of appropriate training, skills and knowledgeAnnex B: Responses to Individual Panel Recommendations – Recommendation 14 & 33
What stands in the way?
www.england.nhs.uk
Annex B: Responses to Individual Panel Recommendations – Recommendation 16 & 26 & 31
Transition from hospital to community care
‘‘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.”33%
36%
31%
Hospital services worked well together with GPs and other services outside of
the hospital
Yes, def-initely
Yes, to some extent
No, they did not work well together
Source: 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
www.england.nhs.uk
• 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
In conclusion
www.england.nhs.uk
Thank you for listening
Any questions?
@katebranchett
@wmscn
[email protected]@carersworcs.org.uk
@carersworcs