Memorandum by the Association of Hospice
and Specialist Palliative Care Social Workers (PC 21)
SUMMARY
Our evidence highlights:
(1) The variable provision of palliative care services
across the UK, and inequitable access to palliative care social
work services in particular.
(2) The variable and inequitable provision of the domiciliary
and night care services necessary to support people in their own
homes.
(3) The inadequate provision of suitable housing.
(4) The variable and uncertain access to continuing care.
(5) The inequitable provision of palliative care for
those not diagnosed with cancer, and the inequitable provision
for some groups of people with cancer such as older people, or
people with learning disabilities or mental illness.
(6) The inequitable access to palliative care services
for people from ethnic minority communities.
(7) The shortage of nurses and home care workers.
(8) The focus on cancer of the new funding for palliative
care, and lack of funding to expand palliative care provision
for those with non-cancer illnesses.
(9) The different priorities—targets and performance
indicators—of health and social care providers which undermine
joint working.
EVIDENCE
The Association of Hospice and Specialist Palliative
Care Social Workers is a national organisation made up of over
260 members (all qualified social workers) working within specialist
palliative care settings for adults and children, in the voluntary
and statutory sector across the UK. Many of our members are employed
directly by the hospice in which they are working, others may
be employed by local authorities to work within specialist palliative
care teams and units.
The Association was formed in 1986. It seeks
to raise and represent the concerns and interests both of palliative
care social workers and of the patients and families with whom
they are working. In the 1980s it was members of the Association
who were instrumental in persuading the Government of the day
to introduce the fast track mechanism, the DS 1500 or doctor's
report, whereby terminally ill people could access Disability
Living Allowance and Attendance Allowance. Prior to that, many
terminally ill people died long before they could qualify for
disability benefits.
Social work is an integral part of the multi-disciplinary
team within palliative care, offering an holistic service to patients
and families. Unlike many fields of social work, specialist palliative
care social work is potentially a universal service and we are
used to working with a diverse range of people in terms of age,
diagnosis, class, ethnicity, sexual orientation, religion and
culture. Palliative care social work involves working with two
groups of people—direct service users with life threatening
or terminal conditions and those who are bereaved. Social workers
are skilled at balancing the different and sometimes competing
needs of the two groups.
Specialist palliative care social workers offer
a wide range of support to patients and families from practical
help and advice around income maintenance, debt counselling, help
with housing and accessing other services, through to advocacy,
individual counselling and group support. Key to specialist palliative
care social work is the desire and ability to see people as whole
people and not as a set of problems, to understand the connections
of their lives and to seek to act on, rather than ignore, the
constraints and discrimination they experience in society.
Issues of choice in the provision, location and
timeliness of palliative care services, including support to people
in their own homes
1. Our experience is that many patients
and families have little choice in their access to palliative
care services. This includes access to palliative care social
work. The problem seems to be twofold. Provision of palliative
care is patchy and not uniform or consistent across the country
and some palliative care services do not employ the services of
a social worker. Research has shown how much service users value
the help and support of palliative care social workers: they play
a crucial role in the way that service users had coped with illness,
impending death and bereavement. (The Involve Project, What Service
Users want from Specialist Palliative Care Social Work; forthcoming.)
2. Because we work with patients within
their social context we are able to see and advocate for the patient
within their family and community context, be sensitive to their
cultural and spiritual needs and to advocate for practical support
and services on their behalf. We form a link between the palliative
care team and the support services available from the local authority.
Additionally, specialist palliative care social workers are usually
skilled in counselling and family work. The combination of skills
offered by specialist palliative care social workers makes a unique
contribution to the psychological and social aspects of the multi-professional
team caring for patients, their families and carers.
3. A serious concern facing the Association
is that, with budget restraints, some specialist palliative care
services and hospices are choosing to cut the services of the
social worker, thus depriving patients, families and carers of
support which cannot be provided by other members of the multi-disciplinary
team and which is not available in the community.
4. We would like to draw attention to the
lack of provision available to support people in their own homes
when they are ill and should they wish to die at home. Provision
is frequently dictated by the financial circumstances of an individual
and not through choice and the provision is therefore very inequitable.
Night care is seldom available, except via the provision of Marie
Curie nurses on a strictly time limited basis. Many of our patients
require help at night and this is simply not available.
5. Again the quality of home care, provided
by local authorities for support during the day, is very variable.
These carers are normally provided through private agencies and
have no training in palliative care. Nationally there is a problem
of obtaining skilled, well trained carers who can offer a consistent
service enabling them to build up a relationship of trust with
services users. It is not uncommon for our patients to have a
different carer coming in every day. Some local authorities refuse
to provide any help with cleaning and housework, leaving very
sick people to live in dirty homes, or pay for a cleaner themselves.
6. The requirement for local authorities
to "contract out" services such as domiciliary care
to private agencies was based on a view that this ensures greater
flexibility and choice. In practice this seems over-optimistic.
Home helps provided directly by local authority social services
departments can provide a safe and responsive service covering
practical, social and personal help. With local authority provision,
it seems more likely that home care staff will receive training
and support.
Previously, district nurses and their assistants
would wash and dress patients in the community, supervise the
medication and give them a bath. Again, this worked better than
the current situation.
7. People can only exert a choice in their
access to palliative care and gain support to stay at home if
the services exist. This includes access to social work services,
adequate night care and proper provision of carers during the
day. Resources are necessary if the level of services are to be
improved so as to make choice a reality.
8. A separate, but related issue, is that
of access to suitable housing. It is virtually impossible for
terminally ill people to get appropriate housing transfers when
needed and thus many will not be able to die at home, even if
they want to, because their existing homes have become inaccessible
and unsuitable.
9. Access to continuing care is uncertain
and there are widely differing interpretations of the criteria
for accessing continuing care. This causes confusion amongst professionals,
let alone the public. The assessment system is not always rapid
enough. One social work team reports that a patient waited for
six weeks for his application for continuing care to be assessed
by the local PCT. Eventually funding was agreed but too late as
he was admitted to hospital as an emergency and died there.
Equity in the distribution of provision, both
geographical and between different groups
1. There are also serious inequities in
the provision of palliative care across different diagnoses and
between different groups. Generally, people dying of a disease
other than cancer will not have access to palliative care and
older people, even if they have cancer, do not access palliative
care in the same way as those who are younger. Members of our
Association working in inpatient settings report that respite
care is offered much more frequently to younger patients and there
is always pressure to discharge older people to nursing homes,
if they cannot return home. There is little provision for people
with long term needs such as those with brain tumours, dementia,
or end stage heart disease.
2. Members of the Association have raised
the issue that people with learning difficulties and those with
a mental health diagnosis are generally not having their palliative
care needs met and do not access hospice and specialist palliative
care services. There are inequities in the provision of palliative
care across the country. A post-code lottery operates in terms
of whether people will gain access to hospice care and the same
is true of specialist palliative care services. Palliative care
provision for those who do not have cancer, motor neurone disease
or HIV/AIDS is almost non-existent.
Communication between clinicians and patients;
the balance between people's wishes and those of carers, families
and friends; the extent to which service provision meets the needs
of different cultures and beliefs
1. As an Association we have pressed for
recognition of the needs of people from different cultures and
beliefs. Many hospices make strenuous efforts to make their services
accessible to different groups and faiths, some, however, have
not adequately addressed this issue and there is evidence to show
that GPs and hospital doctors do not always refer people from
ethnic minority groups to preferred service. Even where patients
and families from different cultures and beliefs are accessing
hospices and specialist palliative care services, there are often
a complete lack of other services available to them in the community
in order to support them at home; for example carers who speak
their language, access to interpreters, day-centres geared to
the needs of minority ethnic groups and so on.
Workforce issues including the supply and retention
of staff and the quality and adequacy of training programmes
1. There is an acute shortage of nursing
staff in palliative care. Generally, work within hospices and
specialist palliative care units is demanding, challenging and
of a fast pace. However there is often no career structure, little
opportunity for promotion and in some hospices lack of parity
with the NHS in terms of pay and conditions and inequalities in
training opportunities. The Government has encouraged the setting
up of a range of specialist nursing posts, but this leaves untouched
the main issue that general nurses, doing the vast body of work,
are underpaid and feel undervalued and disempowered.
2. We have already referred to the problem
of recruiting good home care workers. This reflects the low value
placed on such work demonstrated by low pay, lack of training
and education opportunities, and few routes to promotion.
Financing, including the adequacy of NHS and charitable
funding and their respective contributions and boundaries
1. The recognition of palliative care needs
within the National Service Frameworks for older people, and for
those with coronary heart disease reinforces the Department of
Health's acknowledgement that palliative care should be available
on the basis of need, not diagnosis. Resources are needed to make
this a reality; current palliative care funding is linked to a
cancer diagnosis.
2. Social care is predominantly provided
or purchased by local authorities. They have comparatively small
budgets and numerous competing demands. Their performance indicators
and statutory duties can lead to different priorities from the
health service. Adequate funding is necessary to enable local
authorities to respond flexibly to the palliative care needs of
their residents.
3. The social care provided via local authorities
is predominantly a residual service, and not a universal service
such as the health service. There are eligibility criteria to
receive a service, very variable between authorities and variable
over time within any one authority, depending on budgets. This
does not result in equitable provision of social care.
4. Unlike health care, local authority social
care is not free at the point of receipt. It is means-tested.
The boundaries between health and social care are blurred within
palliative care, and frequently contested. The different service
boundaries, which may or may not result in a free service depending
on whether the service is provided by the voluntary sector, a
private agency, the health service or the local authority causes
confusion and inequity for service users.
The impact and effectiveness of Government policy
including the National Service Frameworks, the Cancer Plan and
NICE recommendations
1. The Association submitted comments on
the NICE guidelines. We expressed our disappointment that they
included comparatively slight acknowledgement of the role of the
specialist palliative care social worker who works at the interface
of health and social care. We felt the NICE guidelines glossed
over the interconnectedness of the issues affecting patients and
how social problems may lead to great psychological distress.
2. The guidelines did not adequately address
issues of social inequality and how the experience of cancer may
differ due to social inequalities. There was no reference to the
difficulties experienced by marginalised groups. The provision
of support to such groups is much more complex than the document
suggests and we would argue what is needed is workers, such as
social workers, who understand the social impact of cancer in
the context of a person's cultural, social and ethnic background.
It seems clear to us that these omissions in the guidelines will
have ramifications for the kind of services that will be provided
and that it is likely that many service providers will seek to
omit the services of palliative care social workers on cost grounds.
3. The Delayed Discharge Bill means that
increasingly the resources of local authorities are being skewed
towards hospital discharge and that other services such as home
care and day-centre care are increasingly being withdrawn, particularly
from elderly people. This affects many of the patients and families
with whom we are working. Many of our patients cannot leave hospice
care because the local authority services that they need are simply
not available. Some patients are being discharged from hospital
to respite in a hospice as a means of delaying the issue of discharge,
resulting in inappropriate use of hospice services.
4. An additional negative consequence of
the delayed discharge legislation is that disputes between PCTs
and social services departments about prognosis are much more
likely because of the financial penalties placed on social services
departments forced to prioritise care for acute hospital patients
over care for patients from hospices and other non-acute hospitals.
February 2004
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