Memorandum by the Association of Directors
of Social Services (PC 57)
The Association of Directors of Social Services
(ADSS) is a registered Charity. It represents the 187 Directors
of Social Services in England, Wales and Northern Ireland. It
has 11 Regional Branches and 6 Policy Committees.
The Association is able to bring together tremendous
breadth, depth and accumulated experience on all issues concerning
managerial policy and professional activities of social services
Directors of Social Services are jointly responsible
through the activities of their departments for the wellbeing,
protection and care of many thousands of elderly, disabled and
young people as well as children throughout the country. They
are also responsible for the promotion of that wellbeing and protection
through the provision of direct services as well as joint partnerships
with voluntary agencies and other bodies.
The ADSS welcomes the review of the Health Committee
into palliative care and is keen to attend to provide oral evidence.
The written evidence below outlines the ADSS position for adults
and includes a separate paragraph regarding palliative care for
2. THE PROVISION
The provision of palliative care in the UK is
narrowly defined being currently available almost exclusively
to people who are suffering from cancer. Adults and older people
who are dying from conditions other than cancer, for example those
in the later stages of progressive neurological conditions, often
receive no palliative care at all. Ongoing involvement with the
NHS can be minimal, with much of any ongoing care being provided
by local authority commissioned care staff either in the community
or residential care settings who have little specialist knowledge
of, or training in, palliative care.
This may partly be due to the fact that people
suffering from terminal cancer will have had some recent intensive
treatment from the NHS and, therefore, remain within and are viewed
as (validly) within the remit overall of NHS responsibility. People
with neurological and other chronic conditions that will lead
to death have often not been the subject of intensive NHS treatment
and are, consequently, not viewed as ill in the same way even
though their day to day functioning and level of dependency may
be similar or worse than that of a patient with late stage cancer.
People with neurological conditions may not
have had any active treatment for many years and NHS services
have typically not been organised in an ongoing way to support
and care for them. Responsibility normally falls on Local Authorities'
Social Services Departments to provide this care either in the
community setting or via nursing and residential home placements
and, consequently, ongoing connection to NHS care is often weak.
A common consequence of the absence of NHS palliative
care services to this group of people is generally admission to
nursing home care for the great majority as they reach the more
advanced stages of progressive neurological illness. However,
thereas in their own homesspecialist palliative
care services remain absent. A similar picture can be seen for
many older people dying from a wide range of conditions.
3. FUNDING OF
The disparity between cancer sufferers and people
with long term neurological conditions is also underpinned by
the current operation of NHS Continuing Care Criteria across the
country. In most cases people in later stages of progressive neurological
conditions are not recognised as entitled to full NHS Continuing
Care. Consequently, many of their support and care services (eg
someone popping to keep an eye on them during the day, assisting
with feeding, sitting services etc) are provided by Social Services
and, therefore, chargeable via a means testing arrangement. Likewise,
people going into residential or nursing home care on a permanent
or respite basis will also pay for this via a means test.
A cancer sufferer cared for at home, therefore,
may be washed, assisted with toiletting, fed and generally have
their care supervised by NHS funded staff and receive such care
free of charge. Someone with a neurological condition is more
likely to receive such care via a Social Services arrangement.
If, for example, this was for two hours a day (14 hours per week)
it could, in many parts of the country, cost them £100 per
week if they had savings of £18,000 or a reasonable level
of income. This would be on top of any other care services they
needed to pay for (which for a very seriously ill person would
probably be many times that level of care). For someone who needed
to go into residential or nursing home care the situation would
be much more expensive, a self-funder could often pay £30,000
a year on the basis of having owned a house.
This is often that case even if an individual's
condition is that they are totally paralysed, cannot speak, swallow
effectively and are, therefore, tube fed, and are dying. If such
a person was deemed as meeting NHS Continuing Care criteria they
would, of course, pay nothing if they went into a nursing home
or had all their care delivered at home. This inequity is particularly
concerning when compared to someone with a more "recognised"
illness. Additionally, sufferers from CJD appear to receive all
of their services free from the NHSie they are considered
as eligible for Continuing NHS Care whilst most other people with
neurological conditions are not. It appears that the route a person
comes down, either primarily an NHS one or a social care one,
heavily influences their access/eligibility to NHS provision including
In order to ensure equity, it is crucial that
continuing health care is provided according to need and not disease
label, age of the patient or their history of NHS involvement.
The ADSS would welcome national guidance on continuing care funding.
Palliative care should clearly be a continuing
health care responsibility in respect of provision of free health
and social care for a defined period.
The policy position in the UK whereby palliative
care is frequently funded through charitable providers is limiting
and a stronger public policy for mainstream NHS and social care
providers would provide a greater degree of public confidence
in access to care at the end of life.
4. ISSUES OF
There are often major limitations in the choice
and range of palliative care services provided. People requiring
palliative care often need assistance at night, however, there
is an overall shortage of night sitting and night care cover available
to people in their own homes which causes huge problems for carers.
Provision of 27/7 unit based health and social care services remain
limited and this impacts on the choice of people at the terminal
stages of life.
5. QUALITY OF
The quality of specialist palliative services
is often high but the volume of provision and the type of service
provided is often limited.
6. TRAINING OF
Given the age of the population, the care of
people at the end of life should be part of the mainstream training
for staff working across the health and social care sectors.
7. IMPACT OF
The NSF for older people does not deal with
the issues of care at the end of life apart from the position
of supporting the development of person centred care. This is
a major limitation, particularly in light of the high number of
deaths as a result of strokes and the often different range of
choice available to dying people who also have Alzheimer's.
As more successful medical interventions are
developed for children with life threatening conditions, so more
of these children are surviving into the teenage years. It is
now apparent that difficulties are arising in the provision of
palliative care and services as children progress from childhood
The Director of Social Services from Stockton-on-Tees
has provided details of an inter-agency collaborative approach
involving three PCTs (North Tees, Hartlepool and Easington) and
their respective partners in the Local Authority Education and
Social Care services who have made a successful bid to the New
Gaps were identified in the provision of transitional
care due to may issues such as: lack of clarity regarding the
end of childhood; these young people were an emerging "new"
client group; often the survivors of chronic childhood illnesses;
the ever increasing complexities of multi-disciplinary working;
the management of the ever increasing and demanding budget pressures;
the lack of access and quality in some of the available services.
A major problem was the lack of knowledge around
this group as there had been no collaborative approach to the
collection of information across all of the agencies.
The project will establish a team of three Transitional
Care Co-ordinators who will work across all of the areas of Health,
Social Care and Education to establish a holistic approach to
They will look to develop a comprehensive client
database which will then lead to extensive mapping and review
of existing services to enable the exploration of new models of
service provision which more accurately reflect the individual
needs of the young people involved.
A model of training is also being developed
which will be tailored to support those involved in the delivery
of Palliative Care Services.
The model will be accredited and delivered by
the University of Teesside and the aim of this will be to:
promote the practice effectiveness;
develop multi-disciplinary education;
provide a flexible framework for
provide option modules according
to the level of service in which the practitioner/professional
is working; and
support the development of practitioners/professionals
who are fit for purpose.
Some of the elements of training offered in
the various modules include: nature of transition; proactive planning;
health care economics; early intervention strategies; collaborative
communication; contemporary health care policy; social policy;
ethics; holistic care; promoting client potential; physical disease
process; non-categorical approach to care transition; personal
development plans. It is still early stages for the initiative
but work has begun.
The ADSS, in partnership, with the Council for
Disabled Children, runs a national network of managers, policy
makers and professionals concerned with improving services and
opportunities for disabled children and their families. The CDC
is submitting separate written evidence to the Health Committee.
ADSS and CDC would be pleased to work together to assist the Committee
in considering the extent to which palliative care services meet
the needs of children and their families.
ADSS hopes that the evidence above is of use
to the Health Committee and is keen to provide oral evidence regarding
palliative care for both adults and children.