Memorandum submitted by The Association
of Hospital and Specialist Palliative Care Social Workers (AHSPCSW)
The Association of Hospice and Specialist Palliative
Care Social Workers is a national organisation made up of over
240 members, working within specialist palliative care settings
for adults and children, in the voluntary and statutory sector
across the UK.
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
Specialist palliative care social workers generally
work with those who have a terminal illness, for example cancer,
or those living with a life threatening illness such as HIV/AIDS.
Unlike many fields of social work, specialist palliative care
social work is potentially a generic service and we are used to
working with adults and children, disabled people and those who
have long term mental health problems or learning difficulties.
We work with people both as in-patients while in hospice or palliative
care centre or in their own homes.
Our members offer a wide range of support to
patients and families. This includes individual counselling and
group work, advocacy and help with accessing other services through
to practical help and advice around income maintenance and debt
counselling. We see first hand the effects of chronic and life
threatening illnesses, and the consequent financial difficulties
that often accompany that, on many of the patients and families
with whom we work.
The comments from the Association relate particularly
to Chapter 4 "Supporting people with health conditions and
disabilities". We welcome the emphasis, in this chapter,
on the support that people with disabilities need to return to
work. We recognize that because of lack of support and discrimination
in the workplace many disabled people who would like to work are
not able to do so. However, our concern is for the great majority
of our service users who are unable to work through advanced illness
or disability. Many are very vulnerable due to the nature of the
illness with which they are living and we would raise the following
How will the "most severe health
conditions" be defined and by whom?
Will users of palliative care services
automatically be exempted from a Personal Capability Assessment
and a Work Focused Interview? At present "terminally ill"
claimants are meant to be exempt from work focused interviews,
but this does not always work smoothly in practice. If someone
has claimed disability benefits under the "special rules"
will this allow them to be exempt for interview?
Many patients may not know that their
claim for Disability Living Allowance has been done under the
Special Rules for terminal illness. There will be a need for Department
of Work and Pensions to communicate sensitively with those claimants.
It will be important for the system to link those patients claiming
under the Special Rules, with any new claim for Incapacity Benefit,
and for the interview requirement to be waived at that stage.
What will happen to those claimants
who may be extremely ill when they apply for benefit, but who
do not immediately qualify under the Special Rules for disability
benefits? Will they also be required to attend an interview? Such
patients may be undergoing a debilitating course of radio or chemotherapy,
so that the prognostication of a terminal illness may be delayed.
Many of our members work with patients
suffering very high levels of anxiety and depression as a result
of their diagnosis with a terminal illness and those who may also
have serious long term mental health problems. We are very concerned
at the effect of the proposed changes on these people. What level
of support will there be for those attending a Work Focused Interview?
Generally for all those claiming
Incapacity Benefit the initial holding rate is very low and would
cause considerable financial hardship. It seems inappropriate
that any claimant, who has paid for this benefit through National
Insurance Contributions, should expect to receive such a low amount.
30 September 2005