Memorandum by National Forum for Hospice
at Home (PC 33)
1. INTRODUCTION
The National Forum for Hospice at Home was established
in 2000 as an umbrella organisation to promote awareness of and
offer support to Hospice at Home services throughout the UK. To
date there are 82 member organisations providing care to over
20,000 patients and their families. These services provide a range
of specialist palliative care including specialist advice and
symptom control, respite and practical nursing support. Most provide
bereavement support and many services include complementary therapies
alongside the nursing care. Most services provide out of hours
support and a number are able to provide out of hours visits;
however, many hospice at home services do not have direct access
to "out of hours" specialist medical advice which is
key if patients are to remain at home.[1]
The Forum holds an annual conference looking
at issues of specific interest and concern to hospice at home
and this is over-subscribed each year.
Hospice care is not all about buildings . .
. Hospice at Home brings the hospice philosophy into people's
home.
2. SUMMARY
Specific items for Hospice at Home
— The National Forum for Hospice at
Home believes that a national debate on palliative care must focus
on where care is to be delivered and meeting patient choice. Home
is the choice of most people and hospice at home services can
address this need. So often hospice at home services are the invisible
service.
— Hospice at Home services have outstanding
issues around the current legislation around National Care Standards
registration. Many stand alone hospice at home services are providing
a full range of traditional hospice care in the home yet the law
has placed these services in a separate register from the hospices
with buildings.
— Hospice at Home services are very
vulnerable to the change in GPs out of hours contracts and will
be facing a considerable increase in calls on their services from
the public unless robust out of hours replacement medical cover
is arranged.
— Out-of-hours drugs access is an issue
for many Hospice at Home services, with difficulties being reported
in all areas at night and weekends.
3. ISSUES OF
CHOICE
Home is the choice of the majority of patients
and their families yet currently only 25% of people die at home.
Research has indicated that 70% of people would choose to die
at home if given adequate support.[2]
Greater investment in hospice at home services will directly contribute
to addressing this need. There needs to be greater awareness within
the NHS about the importance of choice of place of death to patients
and families.
A recently published report "Care of the
dying and the NHS" highlighted this problem. Amongst other
issues, participants spoke about problems around getting relatives
home—"we were trying to organise for her to go home
to die but we couldn't organise it. She was in a tiny room—she
never got out of casualty".[3]
Current Hospice at Home services are not available
in certain areas and it is vital that a needs assessment and gap
analysis is undertaken on a regional basis.
4. REGULATIONS
AND STANDARDS
The National Forum for Hospice at Home submitted
a response to the consultation process prior to the Care Standards
Act being drawn up. Despite this, a serious anomaly has arisen
within the interpretation of the Act. From 1 April, stand-alone
hospice at home services will have to register as Nurses Agencies
within CSCAI which puts these organisations in a different directorate
to other hospice at home services and the in-patient and day hospices
within CHAI. Whilst these Hospice at Home services will work towards
the same standards and quality levels as other hospice services,
the fact that they are outside CHAI may lead to disadvantages
in the future.
Inconsistency of registration has led to organisations
with the same range of services being registered in a different
way—eg one hospice at home is a Nurses Agency whereas a
very similar service is being forced to register as an Independent
Medical Agency, a Nurses Agency and a Domiciliary Care Agency
with three lots of fees and triple inspections and paperwork.
Discussions with the National Care Standards
Commission have been held over the last year but we are no closer
to resolving this issue. We urge the Department to review with
the NCSC the regulations to find some way of embracing all hospice
services within the same Directorate and overcome the need for
multi-registration.
5. FINANCING
The additional funding of £50 million in
the current year for specialist palliative care has been very
welcome but funding continues to be an issue for many services.
The National Forum for Hospice at Home members welcome the current
initiatives looking at national tariffs for specialist palliative
care services. Until the issue of funding the core services is
addressed very few hospice services can look at development and
growth.
The gap between core service expenditure and
statutory funding to meet these costs gets wider each year with
lower than inflationary increases to service agreements and other
forms of funding.
The financial implications of Agenda for Change
will be felt by all hospice services and there is general concern
that the independent sector will again be expected to bear the
costs which have arisen from an NHS initiative. We would urge
the Department to consider meeting the additional costs faced
from Agenda for Change.
NHS Electronic Records—It should be acknowledged
that for hospice services to be fully included in the future of
patient record processing, the financial investment they face
is substantial and mirrors the investment being put into the NHS
project. Some additional funding has been made available through
slippage monies arising from the £50 million, but again there
is no consistency of approach for this and no formal acknowledgement
of this additional cost.
6. WE RECOMMEND:
— That the current inconsistencies
and problems around National Care Standards registration are addressed
as a matter of urgency.
— That the provision of Hospice at
Home is taken up as a National Project within the palliative care
debate.
— Through partnerships between the
voluntary hospice sector and statutory bodies, the development
of hospice at home is under way. This initiative must be seen
to be encouraged by Government.
— That additional national work on
gap analysis and needs assessment around patient choice on place
of death is directed from the Centre.
— That the whole issue of financial
support within the wider hospice world, not just hospice at home,
continues to be given a high priority.
— That a Review of the law and regulations
around drugs dispensing to improve out of hours access is undertaken
urgently to improve patient care.
February 2004
1 Mapping exercise Sept 2003. National Forum for Hospice
at Home. Back
2
Professor Irene Higginson 1998. Back
3
"Care of the Dying and the NHS-some carers' views":
compiled by Jayne Thomas: St Christopher's Hospice, National Council
for Hospice and Palliative Care Services and The Nuffield Trust:
2003. Back
| 
