Memorandum by Professor The Baroness Finlay
of Llandaff (PC 67)
PALLIATIVE CARE IN WALES: A RESUME
As the first part of the development of a strategy
for planning palliative care services in Wales, a resume of the
level of current unmet needs and current services was undertaken.
Although health is a devolved function, now the responsibility
of the National Assembly for Wales, the data collected has included
calculations of staffing numbers required and highlighted some
generic problems in service provision. These lessons are applicable
across the UK. Parts of the strategy document for Wales are therefore
being provided to the Select Committee on palliative care services.
There are some specific features about Wales,
which we believe are equally applicable to other parts of the
Increasing older section of the population.
Prevalence of cancer in older generations.
Shortfall in palliative medicine
consultants per head of population.
Inequity of access to specialist
palliative care services.
Core NHS Funding versus Charitable
The largest cause of death in Wales is ischaemic
heart disease with the second largest cause of death in Wales
being cancer, the most prevalent being lung cancer. Respiratory
illness is also an important cause of death in Wales, for both
cancer and respiratory illness Wales has one of the highest premature
mortality rates in Europe.1
The population of Wales is increasing, mid-year
population estimates (rounded to the nearest hundred by age) place
the population at 2,873,000 in 1999 rising to 2,885,500 in 2002.
The proportion of the elderly within the Welsh
population is also rising, in 1999 there were an estimated 127,800
people in Wales aged 70-74 years rising to 135,900 in 2002 for
the same age group. Similar figures show an increase in the older
age groups, age 80-84 years 64,900 in 1999 rising to 68,400 in
2002 and aged 85 and over 45,100 in 1999 rising to 53,700 in 2002.2
In 1999 28,892 registered deaths in Wales carried
a diagnosis of cancer.3
The incidence of cancer in the older age groups
is quite marked. Cancers are responsible for a higher proportion
of all causes of death among older age groups for example, 41%
of all deaths in the 55-64 age group (per 10,000 head of population)
are due to cancer. Compared to the younger age group of 35 years
and below where only 7.5% of all deaths are due to cancer.4
There is a lot of valuable work being undertaken
in England with respect to the patient's preferred place of death.5
Current national statistics on preferred place of death for patients
dying in Wales were unavailable at the time of preparing this
resume however data were available from Office of National Statistics
(ONS) 1998 showing that the majority of deaths occurred in NHS
hospitals. See Table 1 below.
1998 MORTALITY STATISTICS WALES
|Total Deaths for 1998 by Welsh Health Authority
||NHS Hospitals||Non-NHS Hospitals
||At Home||Other Communal Establishments
||In other private houses/other places
A brief postal survey of palliative services in Wales was
undertaken in January 2001. The survey was sent to health authority
nominated cancer leads, Local Health Group cancer leads, Community
Health Council cancer leads, Trust lead cancer clinicians, chief
pharmacists, hospices (inc. Hereford & Shrewsbury as it serves
parts of Mid-Wales), the Marie Curie Regional Manager, Macmillan
Wales advisors, Local Health Group nursing representatives and
Local Health Group pharmacy representatives.
The survey asked about the adequacy of services to meet the
needs of the terminally ill patients in the population group for
whom the respondent had responsibility. The topics covered were
those deemed to be key to the establishment of standards of good
practice in care of the terminally ill and to ensuring effective
functioning of professionals with good information transfer and
that education was available to meet the health care professionals'
There was a 30% response rate, which is in line with the
return rates for postal surveys reported in the literature.6
Table 2 outlines the responses to the survey.
SUMMARY OF THE RESPONSES TO THE BRIEF SURVEY OF PALLIATIVE
SERVICES IN WALES 2001
|Symptom management|| 1.5%
Professionals to Patient
Professionals to Family/Carer
|Information to Children||11.7%
|Collaboration and Communication with
|Family and Carer Support|| 3%
|Bereavement Care and Support||11.3%
|Integrated Care with other Services||16.7%
|Specialist Palliative Care Team||14.4%
|Out of Hours Care||22.6%
|The quantitative responses to the survey indicated a need for more palliative care consultants and specialist nurses in the community and in the district general hospitals throughout Wales.
Furthermore, the need to develop and consolidate a specialist
palliative service for normal working hours and out of hours,
providing for all the people of Wales regardless of location was
"We need more specialist nurses in the community and,
more benchmarking in the community currently, there is one nurse
dealing with complex caseloads no psychological support, at very
least we need a 1.5 WTE Consultant in the Trust and in the community."
"Emotional, social and practical support is patchy and
illogically delivered, those that least need/want it seem to receive
it whilst those most in need go without."
The patchy and apparently random provision of palliative
care throughout the principality has resulted in massive inequity
of access for people with progressive life limiting disease. There
is a widespread shortage of consultants in palliative medicine
across Wales. Some areas do not have access to a consultant in
palliative medicine; in others one consultant is obliged to manage
a huge area.
Following the Calman Hine report on cancer services in England
and Wales, an implementation group was established in Wales, chaired
by Prof. Ian Cameron. Recommendations in the Cameron Report (1996)
7 indicate that for a population base of 200,000 the following
is required as minimum for the community alone (it does not include
hospital advisory services):
1WTE Consultant in Palliative Medicine
3WTE Specialist Nurses ( Community)
In addition, the staff required for advisory teams in Cancer
Unit Hospitals were estimated to be:
3-5 sessions Consultant Palliative Medicine Time
Plus one specialist Nurse.
A community of approximately 200,000 will also require:
0.5WTE dedicated social work input.
Physiotherapy and Occupational Therapy should be available
on approximately one session a week minimum to be attached to
the palliative care team.
Table 3 below shows the Cameron recommendations against the
current provision detailing the shortfall.
CAMERON RECOMMENDATIONS AND SHORTFALL IN WALES 2001
|Recommended in Cameron 1996: Cons in Palliative Medicine for Cancer Services
|1997 Popn by Health Authority
||Standard Incidence Rate of cancer 1:3
200,000 popn. in community
|Year 2000 Consultant WTE in Palliative Medicine currently in post
|1997 Total population of Wales||2,921,000
10 post holders
An alternative model of calculation can be derived from the
figures presented to the Royal College of Physicians8 suggest
that a resident population of 80,000 would require 0.51 WTE palliative
Utilising this Royal College formula indicates that a requirement
of 22 WTE palliative medicine consultants would be necessary for
optimum palliative care service in Wales. This corresponds closely
with the calculations arising from the Cameron report but neither
method allows for the rural nature of Wales or for areas of poor
social deprivation. The Jarman index of deprivation has been linked
to funding issues. If the Barnet formula is viewed as a balanced
representation of the deficit of resources as a result of deprivation,
this can be used to calculate need. This suggests that the true
shortfall of palliative medicine consultants in Wales may be as
high as 17 WTE Consultants.
If the requirement for consultants in palliative medicine
is calculated for Wales, which has a population of almost 3 million,
then 19-22 (RCP estimate) or 19.8-23 (Cameron report) Whole Time
Equivalents Consultant in palliative medicine are required to
ensure adequacy of care. This can be approximately translated
as 6-7 WTE consultants per million population, a figure that may
be useful in determining service planning and commissioning.
Each consultant will be responsible for training junior medical
staff at all grades and should also undertake research and teaching.
They will also work with specialist nurses and physiotherapists,
social workers and occupational therapists who have developed
specialised skills in care of the terminally ill, with adequate
secretarial support to the multiprofessional team.
1. "Access & Excellence" Acute Health Services
in Wales July 200X NHS Wales Corporate Strategy Project.
2. Welsh Assembly Government Statistical Directorate.
3. Office of National Statistics (ONS) Hampshire UK.
4. Office of National Statistics (ONS) Hampshire UK.
5. Storey L., Pemberton C., Howard A. & O'Donnell L.
(2003). "Place of Death: Hobson's Choice or Patient Choice?".
Cancer Nursing Practice Vol 2 No 4 p33-38.
6. Robson C 1998. "Real world Research" Blackwell
Oxford UK & Cambridge USA.
7. "Cancer Services in Wales" report for Cancer
Services Co-ordinating Group. (1996) Chairman J Cameron NHS Wales.
8. A Naysmith in a letter to Sir George Alberti 21 February
2000 on behalf of the Association for Palliative Medicine for
Great Britain and Ireland.