APPENDIX 30
Memorandum by National Care Standards
Commission (PC 40)
INTRODUCTION
1. The National Care Standards Commission
(NCSC) is an independent public body set up under the Care Standards
Act 2000 to regulate social care and private and voluntary health
care services throughout England. Its aim is to improve the quality
of the service provided and the standard of living for the people
using the service. The Commission regulates a broad range of palliative
care providers from hospices, care homes to domiciliary agencies
against Regulations and a series of National Minimum Standards
set by Government.
2. The NCSC welcomes the Committee's inquiry
into palliative care, especially the focus on the "needs
and wishes of patients of different ages". Although the Commission
does not as yet have evidence related to many of the points specifically
raised in the terms of reference of the inquiry, our work has
identified a number of important issues in palliative care provision
in the services that we regulate.
THE REGULATION
OF PALLIATIVE
CARE SERVICES
3. The NCSC regulates palliative care services
provided in three different regulatory settings:
— Hospices and Independent Hospitals.
— "Hospice-at-home" (care
in the home).
4. The current regulatory system means that
care homes, hospices and stand-alone services that that offer
hospice-at-home provision are all regulated under different Regulations
(established by Statutory Instrument) and associated National
Minimum Standards (NMS).
5. The NMS for Independent Health Care,
which cover hospices, do not cover stand-alone hospice provision
in people's own homes ("Hospice-at-home"). Instead,
these services are registered as Nursing Agencies and/or Domiciliary
Care Agencies. This means that stand-alone hospice providers and
their outreach colleagues are registered within different directorates
of the regulator and assessed by different standards yet, in many
cases, they offer identical service provision. In addition, this
differential regulation can mean that commissioners of care look
differently at these services.
6. From 1 April 2004 this situation will
be complicated further, as the Private and Voluntary Healthcare
(PVH) Directorate of the NCSC that regulates stand-alone hospices
(covered by the NMS for Independent Health Care), transfers to
the Commission for Healthcare Audit and Inspection (CHAI), while
the Adult Services Directorate that regulates their outreach colleagues
transfers to the Commission for Social Care Inspection (CSCI).
7. Care homes are registered under separate
standards depending on the care services they are registered to
offer (ie those with mental health and or learning disabilities
as well as dementia). Palliative care issues are also found in
all of these categories.
8. Care homes are a significant place of
death for the older population, 21% of the population aged 65
years and older die in care homes. (Office for National Statistics
2000)
THE PROVISION
OF PALLIATIVE
CARE SERVICES
9. The NCSC collects information on the
registered services that provide palliative care across England.
This information is gathered in a different way (and by different
regional boundaries) depending on the regulatory framework for
each type of service.
Table 1
REGISTERED HOSPICES BY PVH REGION
PVH Region
|
| North East
| North West | North South East
| London and South South East
| South West |
|
| Adults | 32 |
25 | 29
| 34 | 31
|
| Children | 3
| 6 | 6
| 4 | 5
|
|
Table 2
CARE HOMES BY CATEGORY AND REGION—OLDER ADULTS
Category
|
| DE(E)
| LD(E) | OP & E
| PD(E) | SI(E)
| TI(E) |
|
| North East | 178
| 95 | 365
| 74 | 27
| 1 |
| East Midlands | 218
| 62 | 710
| 135 | 37
| 0 |
| South West | 369
| 204 | 1,090
| 214 | 9
| 0 |
| West Midlands | 280
| 111 | 736
| 261 | 5
| 0 |
| North West | 261
| 72 | 1,091
| 126 | 39
| 0 |
| London | 119
| 90 | 504
| 47 | 1
| 0 |
| South East | 524
| 250 | 1,299
| 227 | 29
| 0 |
| Eastern | 287
| 138 | 769
| 136 | 7
| 0 |
| Yorks & Humberside | 284
| 57 | 774
| 85 | 3
| 1 |
| TOTAL | 2,520
| 1,079 | 7,338
| 1,305 | 157
| 2 |
|
Categories of care home
E—Service Users who are over 65 years of age but do
not fall within the category of old age
DE—Dementia
LD—Learning Disabilities
PD—Physical Disability
SI—Sensory Impairment
TI—Terminally Ill
OP—Old Age, not falling within any other category
DELAYED DISCHARGES
FROM HOSPICES
10. Hospices, unlike NHS Hospitals, are excluded under
section 3(3) of the Community Care (Delayed Discharge) Act 2003.
This means that a patient with assessed need should receive a
timely supported discharge package from an NHS Hospital under
the terms of the Act. However, the same patient with the same
assessed need in a hospice may experience longer delays waiting
for such a package as the Act has no equivalent requirement for
hospices.
11. NCSC inspection reports identify that 75% of hospices
meet the standard which cover discharge arrangements (NMS for
Independent Healthcare standard H1) with a further 15% exceeding
this standard.
12. This NMS does not require assessment of the number
of discharges which were delayed due to external factors. Service
providers have informed us of cases where, although the service
users needs have been assessed and care packages identified, discharge
has been delayed due to inappropriate levels of home support (particularly
a lack of appropriate social care provision).
13. The following scenario, raised with the NCSC by a
care provider, gives an example of the existing situation in some
parts of the country:
An individual was admitted to a hospice for pain and symptom
management. Their explicit wish was that they remain in the hospice
for as short a time as was necessary to address their symptoms.
Their express wish was that they would then return home following
this treatment. The individual's symptoms were controlled within
five to six days.
There was a delay in the care planning meeting, which only
took place 17 days following admission, due to the problems with
the availability of participants. At this stage it was identified
that a special bed would be required—this took a further
six days. After this, the hospice were advised that carers (provided
by the local authority) would not be available for a further nine
days. The individual died eight days later—one day before
the planned discharge home.
Such situations potentially affect hospice discharge and
thereby also impact on their ability to admit individuals with
complex needs.
AGE LIMITS
AND THE
REGULATION OF
HOSPICE PROVISION
FOR CHILDREN
14. Under present legislation (Regulation 36 of the Private
and Voluntary Health Care Regulations) there is a requirement
that children are treated separately from adults. The improved
prognosis for certain conditions, such as muscular dystrophy,
has meant that more and more children are surviving into young
adulthood. The NCSC has received a number of requests from establishments
catering for children's hospices to be able to continue to care
for service users beyond the age of 18. This provides stability
and continuity of care for the individual, particularly if they
are not expected to live much beyond the age of 18.
15. The NCSC has identified a framework within which
such care may be delivered. This is based on assessment both of
the individual, risk assessment of other service users, the ability
of the service provider to meet the changing needs of the service
user, staff training, competencies and skills, appropriate separation
from other individuals, relevant child protection, and ensuring
that children's rights issues are addressed.
16. The NCSC has also identified appropriate additional
child protection and children's rights standards, which have been
submitted to the Department of Health for consideration when the
Independent Health Care standards are revised (see Appendix 1).
At the same time, the NCSC recommended improvements in the regulation
of welfare standards in children's hospices to bring these into
line with other children's services.
17. Children are also affected by the problems with delayed
discharges and the issues surrounding the different regulation
of hospice provision and stand alone hospice-at-home care. This
can make the move between inpatient hospice provision and hospice-at-home
care difficult.
DIFFICULTIES IN
ASSESSING PALLIATIVE
CARE WITHIN
NATIONAL MINIMUM
STANDARDS
18. The way the NMS for Care Homes are currently designed
means that it is not possible to extrapolate accurately how well
palliative care is being met within establishments. The standards
group many areas of assessment under one overall standard, and
compliance against the standards is measured against the overall
performance against these elements.
19. For example, The National Institute for Clinical
Excellence (NICE) Guidance on Supportive and Palliative Care (Draft
2003) emphasises the role of psychological support within palliative
care. Yet in the NMS for Care Homes for Older People, the requirement
for appropriate psychological care and support is one of the thirteen
elements of the healthcare standard (Standard 8) alongside a wide
range of other elements from the management of pressure sores
to the availability of sight and hearing tests. This means the
current system of inspecting services against the NMS does not
allow information to be gathered specifically about the standards
of palliative care provision across the country.
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