The Royal Hospital for Neuro-Disability (RHN) in Putney, London, delivered their first International Brain Injury Symposium on March 27 & 28th 2014, at The Royal Overseas League, London. It was specifically aimed at Healthcare Professionals and those involved in the rehabilitation of complex disability arising from severe and profound brain injury, reflecting ‘Putney’s’ expertise in this field.
The theme for day one was ‘How to navigate the Rehabilitation Pathway’. Dr Sophie Duport, Associate Director of Research at the RHN, presented and interpreted the limited data available on brain injury in Europe. The shape of the data was similar in the UK, France, Germany, Spain and Italy; the responses (and outcomes) however were different. The cost per capita and per million populations was excessive in the UK. These costs included direct medical and non-medical healthcare, with significant indirect medical costs, largely due to not getting people back to work and productivity. A significant shortfall in inpatient beds for specialist rehabilitation and a low Consultant to patient ratio were contributory.
The keynote speaker for the day was Dr David Ripley, Medical Director, Brain Injury Medicine and Rehabilitation, Rehabilitation Institute of Chicago, who delivered a North American (although this differed, State by State) perspective on specialist rehabilitation. The USA spends 17.6% of GDP on Health vs. the UK’s 9.6%. He described his clinical practice in the assessment, intervention and outcome measurement for patients with severe brain injury, emphasising the need to return to the neurology of the injury and the type of brain that was injured (‘whose brain is it?’) to explain the presentation and prognosis. Early acute rehabilitation in critical care settings happened for the first 2-3 weeks with an average length of stay of 24 days, after which the majority were discharged home. The availability of Long Term Acute Care Hospitals (LTACH) accommodating patients who were still medically unstable, requiring longer ventilation, and not ‘rehab ready’, facilitated this transfer out of acute hospitals.
Two well researched lectures were delivered by Dr Diane Playford, Director, Institute of Neuropalliative Rehabilitation, RHN, and Dr Carolyn Dunford, Head of Research, The Children’s Trust, on the medical management of adults and children after severe brain injury, respectively.
Legal (and practical) matters arising at, during and after brain injury were discussed jointly by Mr Warren Collins, Catastrophic Injuries Lawyer, and Mr Francis Lacey Scott. A Legal Clinic started at Southampton University Hospitals NHS Foundation Trust was highlighted as an example of a collaborative approach.
Professor Lindsay McClellan, Emeritus Professor of Neuro Rehabilitation, University of Southampton, spoke on ‘The importance of rehabilitation – what can we learn from patients and their relatives’. He spoke on the ‘view of the injured person’, the image of the ideal self, the need to invoke compassionate self-thought and of leaving an old ‘self’ behind and ‘making the best use’ of the one that is. He exhorted us to keep an open mind and be willing to be surprised by outcomes, and practice with ‘intelligent kindness’.
The afternoon session had three inspiring speakers from the RHN, Mr Gary Derwent Joint Head of Compass Assistive Technology Service, Mr Marc Viera Occupational Therapy Technical Instructor, and Mrs Karen Marshall Wheelchair and Seating Manager, who focussed on rehabilitative technologies – helping patients take back an element of control in specific aspects of their lives, reducing carer and social involvement. Commissioning for these technologies was also important not just during rehabilitation, but beyond.
The second day of the symposium dealt with the new Royal College of Physicians (RCP) National Clinical Guidelines on Prolonged Disorders of Consciousness (DOC) and the issues of thorough assessment, careful diagnosis and lifelong management. It included the legal implications a DOC creates and the ethical considerations of our views on life and living as well as death and dying.
Dr Judith Allanson, Evelyn Trust Consultant in Neuro-rehabilitation, Cambridge University Hospitals NHS Foundation Trust, described recent research advances in assessment and diagnosis and the absence of an internationally agreed term to describe these patients. Keynote speaker, Professor Lynne Turner-Stokes, Director, Regional Rehabilitation Unit, Northwick Park Hospital, provided an overview of the recently published RCP guidelines.
The guidelines advise on the assessment and management of people with DOC and Helen Gill-Thwaites, Smart Consultant and Developer, RHN, discussed that although a number of tools are available to aid in assessment, people with prolonged DOC require professionals with real skill and familiarity with their unique issues.
Dr Kudret Yelden and Jo Samantha highlighted the bioethics that arise within DOC and how there are multiple decision points within a patient’s journey where these come into play.
Usefully, for the first time the guidance has begun to address how professionals can practically support family members too. Professor Jenny Kitzinger, Professor of Communication Research, Cardiff University, talked about the confusion that many families report and how practical informative leaflets appendiced to the guidance can be offered to help them grapple with all the many new things that having a family member with a DOC creates.
The legal aspects of decision making about medical interventions commonly appeared to have been confusing to families and Fenella Morris QC attempted to guide all through the Mental Capacity Act options of advance directives and lasting powers of attorney for health and welfare decisions.
Inevitably prolonged DOCs raise questions about quality of life and the end of life care needs of this patient group were considered within the guidelines and importantly how to best support people when artificial nutrition and hydration is withdrawn.
Dr Petra de Jong, CEO, Right to Die Society, contrasted the Netherlands experience, where fewer patients exist with DOC, preferring to end medical interventions that may prolong life but are not necessarily thought to have any impact on improving the patient’s recovery from brain injury. This was contrasted by the sanctity of life and right to life in any circumstance view provided by Dr David Jones, Director, The Anscombe Bioethics Centre.
The day highlighted how the special needs of this patient group and their families are increasingly being carefully and thoughtfully considered as well as the responsibilities of health care professionals to serve this group optimally.
ACNR 2014: V14;I4
Published online 09/9/14