More than 100 healthcare professionals from all over the country attended Rennie Grove Hospice Care’s annual conference on Wednesday (19 October). Focusing on how to achieve individualised care through collaboration and partnerships, the theme this year reflected the government’s recent commitment to ensure that people receive personalised care tailored to their specific needs as they approach the end of life.
Jo Clarke, Education Lead for Rennie Grove, explains: “It’s a subject which goes to the heart of our ethos. We aim to give patients with cancer and other life-limiting illnesses the choice about where to receive care and where to spend their final days, working with other providers as necessary to provide seamless care tailored specifically to each individual’s needs.”
Launched almost 20 years ago, the conference is a popular means for the charity’s own clinicians and other healthcare professionals with an interest in palliative and end-of-life care to network, share best practice and hear from experts in that field working in national and local settings.
Chaired by Marie Cooper, Practice Development Lead at Hospice UK, the 2016 conference explored how healthcare providers can work together to provide a service of the highest quality, tailored to individuals and their changing needs. Keynote speaker, Anita Hayes, from the National Council for Palliative Care (NCPC) explained how the ‘Building on the Best’ partnership she leads aims to support hospitals to deliver better end-of-life care. While studies show that up to 87% of people would prefer to spend their final days at home, around 285,000 people die in hospital.
Rennie Grove Head of Education, Jo Clarke, explained: “Anita identified that the challenge for those working in end-of-life care is how to achieve individualised care for an increasing number of people, many of whom will be living alone. At Rennie Grove one of the ways in which we’ve begun to address this is by employing Healthcare Assistants (HCAs) to offer additional support, but the growing number of referrals is an ongoing challenge.”
HCAs support the charity’s specialist nurses by providing personal care for patients who need additional help. They can make the difference between a patient being able to come home where they can access Rennie Grove’s 24/7 responsive nursing care - or having to stay in hospital because they don’t have sufficient support. If a patient doesn’t yet need - or is nervous of signing up to - an agency care package, HCAs provide a stop gap and their weekly visits can give patients the confidence, either to live independently, or to take on a complete care package if their condition deteriorates. By working together, the charity’s clinicians enable 69% of patients to spend their final days at home – with around 95% able to die in the place of their choice.
Dr Neil Pender, Consultant in Palliative Medicine at Rennie Grove Hospice Care and the Hospice of St Francis, focused on ‘Just in Case’ (JIC) medication, a crucial part of enabling a patient to remain at home as their condition deteriorates. He challenged the accepted definition of JIC medication as end-of-life treatments only, arguing that it can also include drugs for symptom control and crisis management for various stages of a patient’s illness.
Dr Pender was joined by other local palliative care specialists such as Dr Helen Pegrum and Jane Naismith from Buckinghamshire Healthcare NHS Trust, who presented on Individualised Care Plans. Working towards a standardised tool to ensure the best possible personalised palliative care for every patient in Bucks, they discussed the need to understand the patient’s needs and wishes before obtaining a medical history. The resulting notes should be held by the patient in a similar way to maternity notes and transfer with them wherever they may be receiving their care.
Debbie Kelly, Interim Service Manager for Children’s Services in Hertfordshire Community NHS Trust, considered individualised care from the perspective of teenagers undergoing the difficult transition from children’s to adult’s services. Debbie highlighted the many differences in the ways the services are delivered, for example, GPs lead on most treatments for adults but are not typically involved in children’s services.
To transition successfully, children need to become experts in their own condition and decision-makers in their treatment, but they could be better supported in this by more advanced planning and joint visits with adult colleagues.
Sarah Burnard, Community Engagement Manager at St Joseph’s Hospice led a session on Community Engagement and Partnerships in ethnically diverse East London. She advocated widening horizons and thinking beyond the patient and carer in order to deliver individualised care, quoting as an example a core group of supporters who have over the years become experts in end-of-life care and spread the word in the community groups of which they are members.
She also described a project run in conjunction with the Hope for Home charity which, in a world-first, saw over 90 trained volunteers delivering 800 sessions in dementia patients’ homes. The Namaste approach to care involves all five senses and incudes hand massage, singing, dancing and reminiscence and has been so successful that the carers of patients are now requesting sessions for themselves.
The final session of the day was something a little bit different: palliative care theatre-in-education group, Stories that Speak, acted out stories to highlight the complexities of dealing with dementia patients. Using two powerful and thought-provoking stories about dementia patients, the group of experienced palliative care professionals set out to help delegates understand the patient experience as well as giving them the opportunity to appreciate the complexities involved in patient-family-professional interactions.