Select Committee on Health Written Evidence


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 departments.

  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 children.


  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, there—as in their own homes—specialist palliative care services remain absent. A similar picture can be seen for many older people dying from a wide range of conditions.


  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 NHS—ie 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 palliative care.

  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.


  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.


  The quality of specialist palliative services is often high but the volume of provision and the type of service provided is often limited.


  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.


  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 to adulthood.

  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 Opportunities Fund.

  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 services.

  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 learning;

    —  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.

February 2004

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