Select Committee on Work and Pensions Written Evidence

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 disability benefits.

  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 concerns:

    —  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.

Suzy Croft

30 September 2005

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