2013 Conference Report

Nearly 120 delegates from right across the south and east of England came together for the annual Rennie Grove conference at Green Park Conference centre in Aston Clinton on Wednesday 17 October 2013.

Healthcare professionals from hospices, charities, GP surgeries and hospitals as far afield as Hampshire, Sussex and Peterborough heard from leading specialists in the field of palliative care about ‘The changing landscape of palliative care – learning from practice’.

Rennie Grove Chief Executive Jenny Provin chaired the conference and her opening remarks focussed on three aspects of palliative care to set the scene for the speakers’ presentations. She discussed the challenge faced by palliative care professionals due to a predicted rise in older people needing complex care and younger people living longer with life-limiting illness. She also talked about change: how hospice care has always been person-centred but now science is making more targeted and personalised treatments possible (such as tagging DNA). She also referenced choice and sustainability in terms of who gets what, where, when and how - and who pays for it?

Keynote speaker Dr Geoff Joliffe from Barrow-in-Furness talked about his role in Cumbria’s Commissioning Group, piloted by the PCT several years before it became national policy. He talked about what commissioners are looking for: they want care providers to avoid unacceptable variance (he quoted the statistic of an 18 year difference in life expectancy between places in the same region) and to help commissioners work with providers who are spending too much, whether on prescriptions, operations or unnecessary hospital admissions. He quoted the shocking statistic that an overnight stay in hospital could cost £600 and that in his area the average length of stay is 21 days. He also said the prescribing budget in his area varies by 200% between practices. He concluded by saying that more public consultation, using tools such as Gallup surveys and focus groups, was needed to help organisations provide evidence to their local commissioners.

Dr Sharon Chadwick, Macmillan Consultant in Palliative Medicine and Medical Director at the Hospice of St Francis, spoke about end of life developments in palliative care. Her presentation focussed on trust: how bad press and larger GP surgeries had led to an atmosphere of mistrust between the public and healthcare professionals. She posed the question whether being open and honest is more difficult in end of life care and asked delegates to consider a dilemma she was faced with during her ward rounds in a local hospital. A lesion was visible in a scan taken 12 months previously, but it had been missed at the time. This patient’s prognosis was now 2 to 3 months and the dilemma was whether he should be told about the lesion on the original scan being missed. The multi-disciplinary team and the ethics committee reviewed the case and ultimately consulted the MDA for objective advice. Their view was that the patient had the right to know. In the event, far from increasing his mistrust in the medical profession, he felt he could trust his healthcare team all the more because they had displayed honesty and integrity. Dr Chadwick went on to talk about person-centred care and gave examples of elderly patients who have multiple hospital visits that are challenging, distressing and unnecessary. Echoing both previous speakers, she challenged delegates to work across boundaries to ensure patients could access what they needed, when they needed it and where they wanted it. She finished with a quote from Michael Petrone, which highlighted the need for the personal touch in any healthcare provision: ‘Healing is brought about not just by medicine. It’s not just treatment which cures you, but all that encompasses the human touch.’ This concept led neatly onto the next speaker – Professor Rob George.

Trained in Respiratory and General Medicine, Professor George has a keen interest in ethics and his current research aims to understand the nature of suffering in postmodern culture. He talked about the need to move ‘from pathology back to personhood’ and stressed that healthcare providers must not take the humanity out of the process of providing care. He highlighted how the consumerism of our postmodern culture risks making us selfish and uncompromising and he echoed Dr Chadwick’s dilemma by stressing how important it is to contextualise decisions and think around problems. By using works of art he discussed how focussing on the specific can cause you to lose sight of the whole picture. He also demonstrated how death in Britain was a central social phenomenon until the middle of the twentieth century, but has now become clinicalised, whereas in many other countries it still maintains its connections with the community. He asked delegates to consider what suffering means and considered various definitions that shared the idea of being forced into something that threatened your sense of self. He noted that the etymological roots of the word ‘patient’ share this idea of passivity – ‘a person to whom things are done’. He urged delegates to recognise that using drugs to alleviate suffering won’t necessarily address the suffering, but simply hide the symptoms and that we need to engage with what’s happening rather than taking away the evidence. He provided a ‘suffering model’ with steps 1 through to 4: 1) conflict leading to suffering 2) chances 3) choices 4) change. He asserted it was the healthcare provider’s job to open up the space in parts 2 and 3 – the so-called ‘decision space’ - so that the patient has the time and opportunity to make choices and change.

Heather Richardson, National Clinical Lead for Help the Hospices and Strategy Advisor at St Joseph’s Hospice in East London, presented the idea that whilst hospice care must be person-centred, it must also consider the person within their population. As part of a needs’ assessment she and her colleagues realised there was a large gap between the demographic of the local population and the people being cared for at the hospice. She wanted to engage with different ethnic groups within the local population in order to understand their end of life care preferences. She appointed ‘bridge builders’ who were recognised and respected figures within their community. Their role was to consult within their communities and report back to St Joseph’s. As a result the hospice was able to engage in relevant ways, for example, through the medium of photographs, radio broadcasts to specific communities or by opening up a public area of the building for a specific community’s use. Next she appointed ‘health guides’, trained in palliative care, to liaise within their communities. In this way she was able to ensure that all local people who needed their service were able to access it in the way they wanted to.

Specialist Neurological Coordinator Liz Garrood addressed the conference about her role as Coordinator and Project Lead for Rare and Rapidly Progressing Neurological Conditions in Hertfordshire. Introduced as a new position two years ago, Liz started with a caseload of 31 patients from across Hertfordshire but by spreading the word about her role and her successful approach to partnership working this has now risen to over 200.

Liz spoke of the challenges faced by many of her patients who experience symptoms covering a wide variety of traditional medical disciplines which usually results in referrals to large numbers of different professionals who often work in isolation. Liz works with her patients to coordinate these different referrals, often encouraging fellow medical professionals to trust other agencies to pick up problems rather than requiring patients to make unnecessary and difficult hospital visits. She is a great advocate of referring her patients into palliative day care and recognised Rennie Grove as her champions in providing patients with support and social stimulation to help them live their lives rather than just living from one hospital appointment to the next. By ensuring that her patients have improved access to timely, responsive care from a range of different community provisions, Liz has vastly reduced hospital admission rates among her patients and has empowered them to make and communicate choices about their own care. This approach not only helps ensure patients have a better quality of life throughout their illness but also saves the NHS a large amount of money, which Liz would like to see re-invested to spread this good practice.

Ashley Morgan gave a very moving and insightful patient’s perspective on ‘facing death’, having been diagnosed with Motor Neurone Disease (MND) 10 years ago. She explained to delegates that 50% of people diagnosed with the condition die within two years but that the progression differs for everyone – there is no set pattern to the disease. Despite facing thoughtless attitudes, comments and bureaucracy from healthcare professionals and other service providers, Ashley is determined to live with MND rather than thinking of herself as dying from it. She has even managed to change her consultant’s views on MND and now he consults her on her care and she advises him on how to talk to newly-diagnosed patients. From personal experience she knows that hospices are so much more than places where you go to die and she is concerned that if palliative care services are fragmented or under threat then this is a real concern for the ‘dying’ - who just want to get on with living.

Focusing on the importance of consultation, person-centred care and partnership working to ensure patients have all-important choice about their care, the conference aimed to give delegates ideas to take back into their own practice.