Memorandum by Dr M Cusden (PC 68)
I am the Medical Director of an 18-bed independent
Hospice, which is part of the Mid Anglia Cancer Network. I am
also Chairman of the Network Palliative Care Strategy Group.
There have been a number of recurrent issues
affecting both our Hospice and the Cancer Network in general.
All three Hospices within our Cancer Network
are independent Hospices, and do have a certain amount of control
over palliative care development, albeit within the available
funds. However, a number of issues are completely outside our
control, but are extremely important for our patients.
There appears to be a serious crisis in the
provision of social care. Patients at home, in Hospices and in
Hospitals are waiting for unacceptable periods both for Social
Services assessments and for a placement of carers within their
homes. These delays can be several weeks and, where patients have
a very short prognosis, such delays are unacceptable as they often
prevent the patient being discharged home or may lead to unnecessary
admission. For those patients who are in the very terminal phase,
(prognosis one to two weeks), healthcare staff will "pull
out all the stops" in order to supplement the social care.
Primary Care Services are already stretched considerably, and
their resources would not allow them to provide these exceptional
levels of care for more than a week or so at a time.
The underlying reasons for difficulties in accessing
care at home are many. There is clearly both a staffing and funding
crisis within Social Services, and this has been the experience
throughout our Cancer Network. There are serious problems in recruiting
carers, partly because of the poor remuneration, but also because
of poor conditions of service including lack of travel expenses.
Within our Cancer Network, we are trying to
overcome some of these difficulties by instituting carer schemes.
In the East Suffolk area, we are planning to make more use of
Marie Curie Nursing Services, and other areas within the Network
have set up different schemes.
This of course adds to fragmentation of services
and may be diverting charitable funds to services which should
be statutorily provided.
I am also concerned about the large numbers
of patients who are not linked in with specialist palliative care
services, who suffer from strokes and other medical conditions
requiring high levels of care at home, who are unlikely to benefit
from local palliative care initiatives.
The second major deficit in care which is outside
the control of specialist palliative care, is that of long-term
institutional care. With the increasing age of the population,
longer survival with cancer and changes in family size and structure,
there will always be a substantial minority of patients who will
require long-term institutional care because of their medical
condition, whether this be cancer or other diseases. The NHS has
a responsibility to provide continuing care for patients whose
health needs are judged to require it, but provision of continuing
care is very patchy throughout the Country, and criteria vary
widely. In East Suffolk, there are no designated continuing care
beds for palliative care. We can occasionally access Care of the
Elderly continuing care beds. As a result, either patients have
to pay for Nursing Home care when they should not have to do so,
or they cannot get a long-term care bed and may have to stay in
Hospital or in a Hospice. The situation has been exacerbated by
nursing home closures and lack of Social Services funding. There
is a particular problem for those patients who are young and unable
to be looked after at home. Most Nursing Homes are registered
for care of the elderly rather than palliative care, which is
generally more expensive to provide in terms of staffing and equipment
Workforce remains a large problem within palliative
care. The number of trainees qualified to be Consultants in palliative
medicine will not meet demand for several years. Although central
funding was made available for specialist Registrars through the
Deaneries, because of increasing demand, the situation has partially
reverted to what was happening before, ie training numbers are
being made available, but without any funding. For charitable
Hospices to provide funding for training posts, which are at least
theoretically supernumery, is not a good use of charitable funds.
There are supply and retention issues with many
other members of the workforce, including nursing and particularly
occupational therapists and physiotherapists. Many independent
Hospices, because they are small organisations in comparison with
Trusts, continue to provide terms and conditions for staff which
are very different from those available within NHS Trusts. For
example, many Hospices use different pay scales, and there are
many variations in entitlement to study leave, holiday leave,
sick pay and maternity leave. Also, the fact that independent
Hospices are outside the NHS, means that while staff entering
these Hospices from NHS posts can continue to contribute to the
NHS Superannuation Scheme, other Hospice staff need to make private
arrangements. All of these factors may contribute to the difficulties
in recruiting and retaining employees. Consultants who are employed
in the Voluntary Sector rather than by the NHS find it very difficult
to access discretionary points and distinction awards, as this
money is distributed through NHS Trusts and not available to non-NHS
employees, even though many of these Doctors spend all their time
treating NHS patients.
I am very pleased that progress has been made
in the area of information technology. Hospices are gradually
becoming part of the NHS net, although this has been quite a slow
process. However, the introduction of electronic patient records
seems as distant a prospect as ever.
The £50 million made available nationally
for specialist palliative care since last year has been very welcome
and has led to significant improvements in service development.
However, because of historical funding deficits, there is still
considerable inequity. The Hospice in which I work is fortunate
to receive approximately 40% funding, but one other Hospice within
our Network is still receiving less than 30%. Although I am not
directly involved with paediatric palliative care, I am very much
aware of the much smaller NHS funding contributions to Children's
Hospices, and I presume you will be receiving submissions from
Overall, it is my experiences that independent
Hospices are working much closer with the NHS than before the
introduction of the National Cancer Plan, Cancer Networks etc.
However, this often depends on local relationships rather than
any national framework and, inevitably, this will lead to inequities.
Working relationships with Social Services are severely hampered
mainly because of inadequate resourcing of Social Services and
the difficulties created by the artificial division between health
and social care.