When, in 1992, I entered the world of hospice care, the NHS and Community Care Act (1990) was just beginning to be implemented. This act effectively split the role of health authorities and local authorities so that local authority departments became responsible for assessing the care needs of the local population and for purchasing the necessary services from ‘providers’ (a split we have been wrestling with ever since).
The aim of the act was to ensure that people in need of long-term care were able to live either in their own home, with adequate support, or in a residential or care home setting. As a newly-qualified, singleton social worker, it took some time to develop the necessary relationships with local social work teams which would facilitate the timely discharge of hospice patients home or to an alternative placement of their choosing. Often at times it felt that our patients, despite their shortened lifespan, were low priority, presenting a lower ‘risk’ for social work departments to respond to than similar patients living alone in the community.
The same year Disability Living Allowance was introduced to extend Attendance Allowance benefit (introduced in 1971) to under 65 year olds. This was an important development in keeping with the evolution towards a more social model of disability which envisaged that recipients of the benefit would be empowered to develop and pay for their own care solutions. However, until the development of the ‘special rules’ for terminal illness (which palliative care social workers campaigned for) there were significant numbers of people who applied for either benefit and were refused and I remember spending many hours drafting impassioned appeals on behalf of terminally ill patients or their subsequently bereaved relatives.
So much has changed since the early 1990s and yet many of the issues we are dealing with today are similar to those two decades ago. The perpetually shifting boundary between health and social care and the problematic of securing funding speedily to achieve the best (person-centred) outcomes for people at the end of their lives and their families whose bereavement experience is largely shaped by how their loved ones needs are met in these final days.
What this series of social-care articles has shown however, is that much has changed in the way that hospices operate, how politically ‘savvy’ they have become and how, light of foot, they have continually evolved to meet the needs of their service users by forging new partnerships, developing new services and, where necessary, new structures such as social enterprises to deliver the social/non-medical, aspects of care. Over the days since the series began we have read numerous examples of how hospices have risen to the challenge of upskilling their communities (professional and lay) to enable choice for their service users not only in how they die but where they die. In this sense hospices have led the way.
What has also changed is the level of cooperation between the large charitable organisations, once seen as competitors, now partners, eg in challenging the government in the recent campaign for free social care for everyone in their last year of life. The times that we operate in are complex, our decisions are made not in a vacuum but in inter-related webs of communities and individuals with numerous and, at times, competing needs; hospices therefore require great wisdom as to how best to meet the needs of their service users in the contexts in which they are set whilst being able to mobilise and contribute to national action through their representative bodies.
In Scotland, where I am presently based, the call for free social care is not so relevant; we have had free personal and nursing care for the over 65s since 2002. This, alongside other universal benefits such as free prescriptions and free travel for pensioners, has been a hallmark of the Scottish parliament. Given the current financial constraints, these benefits are beginning to be questioned although, when polled, the Scottish electorate have consistently affirmed their support of free nursing and personal care even it if means an increase in income tax. This is the gold standard of societal care and something of which the Scottish nation is rightly proud. It is the right thing to do and certainly it reduces intense worry of older patients and their family members.
However in Scotland this benefit is not automatically extended to those under the age of 65, even when terminally ill. For these younger patients and their families the situation is often very difficult as both the patient and their spousal carer are likely to have lost their jobs or to have had their earnings decreased whilst facing all the normal expenditure of family life alongside the inevitable costs of being ill. The sense of injustice that in engendered in patients is perhaps exacerbated by the fact that if they were older some of the worry would be taken away by being assured of personal care, the cost of which would not further impoverish the family.
As a new palliative care social worker I spent a lot of energy trying to achieve good outcomes for my clients, sometimes that could be characterised as an ‘effective use of self’ at other times it shaded into ‘working the system’. Whilst all in good faith, the former was clearly beneficial for the individual service user but the the latter perhaps further disadvantaged those who did not have a similar advocate to work the system on their behalf. Had the association of palliative care social workers not campaigned en mass, with others, the special rules might well not have been introduced and therefore the inequity perpetuated, to say nothing of the burn out of those many advocates working individually on their clients’ behalf.
It seems therefore, in complex times, that dialogues with the individual context and the societal context both need to be maintained. We need to be concerned with serving our own context but supporting the wider context through national action and organisations such as Help the Hospices. In this sense we need to enable the patients in our area to have their medical and social care needs met whilst joining with the national call for free social care for the terminally ill, we seek to find local funds to help the individual mourner to pay funeral costs whilst campaigning, with others, nationally against funeral poverty. Certainly if we are extending our services to cover social care we need to be sure, by way of equality analysis, that our services are truly open to everyone they should be and that we are not inadvertently widening the gap between one group of disadvantaged and another.
In my recently appointed role of seconded social care lead for Help the Hospices national care strategy and support team, I hope to become involved in both these aspects of action on behalf of service users and the hospices that serve them. Linking with colleagues in the professional associations I hope to be part of developing innovative solutions to address the difficulties of providing best care in the current context. As a palliative care social worker, managing a family support services team and with a commitment to widening access and ensuring equitable service, I hope to be a support to those developing projects with a social care focus and to advocate a psychosocial perspective in projects which have a more traditional medical or nursing focus. Mostly I look forward to learning from the hospice community and of being a conduit of that learning for others. I welcome contact from anyone who would want to utilise my role or who would like to share current good practice with the care strategy and support team.
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