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www.hospiscare.co.uk
Hospiscare Response to Your Future Care Consultation
Executive Summary
Hospiscare urges North East and West Devon Clinical Commissioning
Group to explicitly address end of life care in the proposed model of care
as required by The Government Response to the Review of Choice in End of Life
Care. Department of Health, 2016.
Hospiscare supports the CCG’s ambition to care for more people closer to
home provided this is supported by:
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Early palliative care assessment as part of the comprehensive assessment
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Co-ordinated care, including a single point of access, for patients identified as
being in the last year of life
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Robust, responsive and reliable nursing care at home, available 24/7, that
includes palliative care expertise
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Robust, responsive and secure domiciliary personal care at home that has
access to palliative care expertise
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Sufficient community hospital beds in the eastern locality for those who need
them at end of life. Hospiscare does not take a view on where those beds
should be located.
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Sufficient care home beds in the eastern locality for those who need them at
end of life.
Hospiscare urges the CCG to explore commissioning hospice at home
services to enable more patients to die at home and achieve their preferred place
of care and death.
Hospiscare urges the CCG to test the resilience of domiciliary social care
and care home capacity to respond to the new model, as part of the quality
assurance transition process.
Hospiscare and the CCG recognise that there will be some people who will
require in-patient care at the end of their lives. Hospiscare requests that
their needs are explicitly considered in the ‘gateway’ process referred to in the pre
consultation business case.
Hospiscare is a local charity that provided end of life care to 2,400 people last
year. Hospiscare raises 83% of the cost of its services from the local community.
1.
Hospiscare Response to the Your Future Care Consultation
In 2013 Hospiscare comprehensively reviewed its model of care. Patients and
supporters told us they would prefer to be cared for, and die, at home if
circumstances allowed this.
People told us that their priorities for a good care at the end of their lives were:
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Access to expert palliative care when they needed it
Care for their carers – including bereavement support
Hands on nursing in their own home
Practical help in their own home
Consequently, Hospiscare supports the principle of care closer to home but wishes
to make the following observations and suggestions.
1.1 There is no reference in the consultation document to the fact that
a proportion of the patients will be in the last year of their life.
In 2016 the government made the commitment to “ensure (that) end of life care
is part of all the major programmes to transform the NHS.”1 We urge the CCG
to explicitly address end of life care in the proposed model.
In 2013, 3933 people died in the East Devon2 locality.
It is estimated that 75% of deaths would benefit from palliative care input. 3
Another study estimates that between 69% and 82% of all those who die need
palliative care support.4
In the Eastern locality this corresponds to up to 3,225 people based on 2013
figures.
1.2 Hospiscare appreciates the financial constraints the CCG is addressing and
recognises, from its own experience, that care closer to home can be economically
efficient as well as effective.
Hospiscare recommends that the CCG’s proposed model of care should include the
following elements for people who have been identified as being in the last year
of life:
1
Our Commitment to you for end of life care. The Government Response to the Review of Choice in End of Life Care. Department of Health, 2016 2
NEW Devon CCG website: http://www.newdevonccg.nhs.uk/your‐ccg/eastern‐devon/100051 3
Palliative Care Funding Review, July 2011 https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/215107/dh_133105.pdf 4
Murtagh et al (2013) How many people need palliative care? A study developing and comparing methods for population based estimates. Palliat Med 2014 (1) 49‐58 
A palliative care assessment should be part of the comprehensive
assessment. There is evidence that early palliative care assessment improves
life expectancy and improves quality of life in patients with cancer.5 6
Early palliative care assessment enables more people with non-malignant disease
to access palliative care. Evidence suggests that patients with advanced
respiratory disease can also be supported by early palliative care interventions to
improve symptoms.7 Over 90% of people diagnosed with end stage cancer are
referred to Hospiscare but we estimate there to be a further 1,700 people per
annum in the eastern locality who could benefit from palliative care input.8
Early palliative care assessment enables advance care planning to be undertaken
in a patient centred way– rather than as a less considered exercise which can
leave patients and families excluded and lacking key information. Advance care
plans enable people to express preferences about their future care and reduce
unwanted interventions and admissions to acute care.
Early assessment can also include rehabilitative approaches as part of an
individual’s palliative care plans which help them maintain their independence and
be in control of their care for as long as possible.
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People at the end of life should receive a seamless and co-ordinated
response.9 The proposed single point of access must be aligned with the
Electronic Palliative Care Co-ordination System (EPaCCS) - Devon’s end of life care
register held by Devon Doctors On Call. People should be able to access palliative
care support via the single point of access without delay.
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Community nursing and personal care services, for people identified
as being in the last year of life, should include or be able to access,
rapidly, palliative care expertise. Patients referred to Hospiscare services are
more likely to achieve their preferred place of care and death – which for the
majority of people is home.
o
When patients are referred to Hospiscare’s community specialist
palliative care nursing service (clinical nurse specialists)
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42% died in their own homes.10
o
Where patients are referred to Hospiscare’s ‘hands on’ hospice at home
nursing service (Seaton only at present, first year of operation);
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58% died in their own homes
5
Temel, J.S, Greer, J.A, Muzikansy, M.A, Gallagher, E.R, Admane, M.B, et al (2010) Early Palliative Care for Patients with Metastatic Non‐Small‐Cell Lung Cancer. N Engl J Med 2010; 363:733‐42 6
Bakitas, M.A. (2015) Palliative and Supportive Care: Early versus delayed initiation of concurrent Palliative Oncology Care. Patient Outcomes in the ENABLE III Randomized Controlled Trial. J Clin Onc 1438‐1445 7
https://www.ncbi.nlm.nih.gov/pubmed/25465642?dopt=Abstract 8
Hospiscare Model of Care Review, 2013 9
Ambitions for Palliative and End of Life Care: A national framework for local action 2015‐2020. National Palliative and End of Life Care Partnership, 2015. 10
Hospiscare Annual Quality Account, 2016/17 
Average cost per patient cared for £1,443 per annum
This model, a test of change funded by Seaton Hospital League of Friends,
provides outstanding care for people in the last year of life; keeps them at home
and is value for money compared to hospital costs per person in the last year of
life of £6,644. 11
We urge the CCG to explore commissioning hospice at home services in
the eastern locality.
1.3
We are concerned about the fragility of social care provision.
The CQC recently reported that a tipping point had been reached in the capacity
of the adult social care market to meet increasing demand in the UK.12 We are
experiencing regular breakdowns in care packages in the community which often
result in a patient being admitted to acute care or to the hospice when they do
not need that intensity of care.
During 2015 Hospiscare reported 58 incidents to the CCG where the breakdown
of social care packages for people at end of life had caused distress. All of these
people wanted to be cared for at home. 20 people (34%) were admitted to bed
based care; for 22 (38%) relatives became the carer and for 16 (28%) the care
package was resolved.
We urge the CCG to test the capacity of social care market to respond to the new
model before fully implementing it.
1.4 We would like to be assured that in-patient care will still be
available for dying patients who cannot be managed at home because of
complexity or carer breakdown or because they choose not to die at
home.
In 2015/16
120 Hospiscare patients died in community hospital beds
292 died in the acute hospital
171 died in care homes
293 died at Exeter hospice
478 died at home
8 other
(Total 1362, all patients registered with Hospiscare, including those seen by
Hospiscare’s Hospital Support Team at the Royal Devon and Exeter Hospital)
11
What we know now 2013. New information collated by the National End of Life Care Intelligence Network. Public Health England. 12
The state of health care and adult social care in England. 2015/16 Care Quality Commission We would like to be assured that the needs of dying patients for in-patient care
have been considered when calculating the number and location of community
hospital beds required in the eastern locality. We note that a formal ‘gateway
process’ will be applied following the consultation and we request that the needs
of patients at the end of life are formally considered as part of this process.
“A formal local gateway process has been developed by clinicians and will be
refined over the coming months, taking into account learnings from consultation
and pre-engagement work. This process will be used by the wider system to assure
itself that the transition to the new model of care is safe …” 13
We are concerned that there is an assumption in the pre consultation business
case that there is capacity for people to be cared for in care homes rather than in
hospital – if they can’t stay at home. We have experienced unprecedented
difficulties in arranging placements in care homes this year. As a result Hospiscare
has seen an unusual number of delayed discharges from its in-patient unit during
2015/1614
During the period February to July 2015, all discharges from Hospiscare’s inpatient
unit were assessed. 58% (25/43) of those referred for discharge planning were
discharged within 7 days, but 30% (13/43) took over 10 days. The average time
taken to discharge to a nursing home was 16 days.
Preliminary figures for 2016 suggest a worsening of delays in discharge. The yearly
average for length of stay in an inpatient unit bed has been 10 days. However,
during the summer of 2016 the average length of stay peaked in August to almost
25 days per patient because of the difficulty in finding care home beds for people
who had stabilised. 15
During 2016/17 the percentage of successful discharges reduced from 31% to
24% and the average time to discharge increased from 7 days to 10 days.
2.
Hospiscare
Hospiscare is a local charity that provides palliative care in Exeter, mid and east
Devon to the population of the Eastern Locality – 380,800. It has been operating
for 35 years. In 2016 it was rated as Outstanding by the Care Quality Commission
(CQC).
13
http://www.newdevonccg.nhs.uk/file/?rid=111317&download=true (page 32) 14
Hayes, J et al (2015) “How do shortages in community care impact on admissions to a hospice inpatient unit?” Published as an abstract: BMJ Support Palliative Care 2015;5:A12. 15
Unpublished data collected by Baines B and Hayward R October 2016.
Hospiscare is the sole provider of specialist palliative care in the eastern locality;
providing services in all settings including:
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12 bed in-patient unit in Exeter, 24/7 admission
3 centres in Exeter, Honiton and Tiverton offering a range of day services
including volunteer care navigator services and specialist services for people
with dementia.
Hospital Support team at the RD&E (doctors and clinical nurse specialists)
5 community specialist palliative care nursing teams, working 7/7, (36 nurses,
26 wte) - Exeter, Mid Devon, East Devon, Exmouth & Budleigh, Sidmouth.
A 24/7 hospice at home service in Seaton, 7 nurses, 5.7wte (funded by Seaton
Hospital League of Friends)
24/7 telephone advice for patients, families and professionals
Supportive care services including spiritual support, complementary therapies,
bereavement support.
Education services for health and social care professionals, including education
events for care homes and domiciliary care providers.
Hospiscare can demonstrate;
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proven models of care that enable people to be cared for and die at home,
when that is their wish
established integrated working with NHS community services, primary care,
the acute sector and local community organisations
ability to reduce admissions to acute care and facilitate discharge from acute
care
ability to mobilise voluntary effort and funds
During 2015/16 Hospiscare supported 2,401 patients. 1362 of these people died
during the year.
Hospiscare is grant aided by NEW Devon CCG. This grant meets 17% of our
costs. We raise the remaining 83% from the local community.
Hospiscare funded clinical services to the value of £4.2 million (net) to the
local health economy in 2015/16.
Hospiscare
December 2016