Select Committee on Health Written Evidence


APPENDIX 46

Memorandum by Professor The Baroness Finlay of Llandaff (PC 67)

PALLIATIVE CARE IN WALES: A RESUME

BACKGROUND

  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 UK:

    —  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 Funding issues.

DEMOGRAPHY IN WALES

  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

PATIENTS' WISHES

  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.

Table 1

1998 MORTALITY STATISTICS WALES


Total Deaths for 1998 by Welsh Health Authority
Hospices
NHS Hospitals
Non-NHS Hospitals
At Home
Other Communal Establishments
In other private houses/other places

Bro Taf
M
4%
62%
4%
23%
3%
35
7,798
F
3%
60%
8%
17%
9.5%
2%
Dyfed Powys
M
0.2%
58%
4.5%
27%
5.5%
4%
5,973
F
0.3%
54%
8%
21%
14%
2%
Gwent
M
2%
61%
6%
25%
3%
3%
6,162
F
2%
58.5%
15%
17%
5%
2%
Morgannwg
M
0%
60%
6.5%
26%
2%
3%
5,915
F
0.1%
56%
14%
18%
7%
2%
North Wales
M
2%
59%
6%
24%
4%
4%
8,134
F
1%
55%
14%
16%
11%
2%

ADEQUACY OF SERVICE PROVISION IN WALES

  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' needs.

  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.

Table 2

SUMMARY OF THE RESPONSES TO THE BRIEF SURVEY OF PALLIATIVE SERVICES IN WALES 2001


Unmet
Partially Met
Don't
know
Adequately Met
Fully
Met

Symptom management
1.5%
27.9%
22.1%
39.7%
8.8%
Communication:
Professionals to Patient
1.5%
22.4%
22.4%
41.8%
11.9%
Communication:
Professionals to Family/Carer
31.7%
30.2%
28.6%
9.5%
Information to Children
11.7%
25%
43.3%
15%
5%
Collaboration and Communication with
other Agencies
8.8%
33.8%
13.2%
30.9%
13.2%
Family and Carer Support
3%
36.4%
19.7%
28.8%
12.1%
Bereavement Care and Support
11.3%
33.9%
22.6%
22.6%
9.7%
Education
7.7%
35.4%
32.1%
26.2%
7.7%
Integrated Care with other Services
16.7%
24.2%
27.3%
19.7%
12.1%
Specialist Palliative Care Team
14.4%
31.3%
20.9%
22.4%
11.9%
Information Transfer
14.1%
20.3%
23.4%
34.4%
7.8%
Out of Hours Care
22.6%
29%
17.7%
22.6%
8.1%

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 illustrated.

    "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.

DETERMINING STAFFING LEVELS

  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.

Table 3

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
1 WTE/
200,000 popn. in community
0.3-0.5
WTE/DGH service
Year 2000 Consultant WTE in Palliative Medicine currently in post
2001 Shortfalls
Bro Taf
732,500
236,152
3.5
1.2-2
3.7
1-1.8
Dyfed Powys
476,600
152,200
2.5
0.9-1.5
1
2.4-3
Gwent
556,200
172,052
3
0.6-1
0.6
3-3.4
Iechydd Morgannwg
499,800
166,600
2.5
1.2-2
3
0.7-1.5
North Wales
655,900
218,633
3.5
0.9-1.5
1
3.4-4
1997 Total population of Wales
2,921,000
945,641
9.3WTE=
10 post holders
10.5-13.7
WTE


  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 medicine consultant.

  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.

CONCLUSION

  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.

February 2004

REFERENCES

  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.



 
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