Annual Conference
The Iain Rennie Hospice at Home Annual Conference 2009
Preparing for the end - planning for the future?
Our 2009 Conference was held on 14th October 2009 at the Green Park Conference Centre, Aston Clinton. We had an excellent line-up of speakers addressing the subject "Preparing for the end - planning for the future?".
Karol Sikora , IRHH Patron and conference chair for the morning, set the scene by reminding the audience how society has changed in the last few decades. Religion plays a much smaller part in people's lives, illnesses have far more sophisticated treatments and survivorship is a much greater issue for cancer patients in particular than in previous decades. We have an ageing population and an NHS strapped for cash. Families have changed in pattern and location and in an ability to look after the elderly. More and increased services are therefore required to provide end of life care. Charities like IRHH fill the gap and provide a model of what is required.
Mark Roland provided some vivid examples of acute hospital care demonstrating this is often not what is needed, in particular for the elderly suffering from exacerbations of metastatic disease, and of the attempts in south central to improve end of life care in the acute sector via the Liverpool Care Pathway (intelligently applied). He also described the work nearing completion of a unified policy and documentation for DNAR to be launched in March 2010. He encouraged providers of end of life care to develop small incremental improvements in services in the context of PCTs in debt and unlikely to contribute further funds to end of life care.
Patrick White focused his talk on palliative care for patients suffering from chronic obstructive pulmonary disease (COPD) and the unmet needs of this group who have learnt to live with chronic levels of breathlessness. He shared how he has moved from a position that all such patients need end of life care to a belief that in fact they need to be recognised on Gold Standard registers and in the lack of precise prognostication should receive input from palliative care in relation to advance care planning, symptom control and info rmation about their disease.
Andrew Protheroe provided an overview of the role of palliative chemotherapy. What oncologists aim to achieve with it, the variability in responsiveness of different tumours and the side effects to look for in the community. He also discussed the difficulty of assessing fitness for treatment and acknowledged that harm could out-weigh benefits and the need for palliative care to be introduced at an earlier stage for many patients alongside oncology.
Beverly Barclay developed the case for specific care planning for the future of children moving into young adulthood and transiting from children's services to adult services. She outlined the necessity of joined up planning for this age-group with very specific needs as illustrated by a young man suffering from Duchenne muscular dystrophy and the challenge for adult teams of becoming involved in his care.
Sue Varvel , IRHH Director of Nursing and chair for the afternoon, briefly described the model of hospice care provided by the IRHH in response to many requests. She outlined how IRHH structures its 24 hour responsive care and the challenges of providing out of hours care, inter-agency working and trying to meet increasing demand.
Gail Ewing made the case with clarity from her research into carers needs that planning for the future for any patient must involve in assessing carers needs as they play a crucial part in achieving patient choice. She quotes other research where info rmal carers have been described as co-workers with health care professionals as their care forms the 24 hour bedrock enhanced by other services. 
She described a current pilot of a carers assessment which she hopes in the future will run alongside a patient assessment and enable carers to articulate their needs for info rmation, equipment, training, emotional support and/or respite.
Sarah Russell rounded off the day with a comprehensive overview of advance care planning including the legal status of advance directives and statements of preference. She highlighted some of the issues involved in such discussions, emphasising that while there is a national push for this process it must be voluntary for the patient and requires considerable communication skills, reminding the audience that this is a process which may span many conversations that may crop up in an unplanned way.
