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Motor neuron disease (MND) is a devastating and debilitating disease with poor prognosis; most patients die from progressive respiratory failure within three years of onset. A randomised controlled trial conducted in Newcastle provided robust evidence that non-invasive ventilation for patients with MND can significantly improve quality of life and increase survival (216 days with non-invasive ventilation compared to 11 days without). Findings from this trial underpinned recommendations concerning the use of non-invasive ventilation in MND in clinical guidelines internationally, and use in clinical practice has increased in the UK, across Europe, and in the US and Australasia. In the UK, the number of MND patients successfully established on non-invasive ventilation in 2009 had increased 3.4-fold since 2000 and since 2009 has further increased almost two-fold.
Duchenne muscular dystrophy (DMD) is the commonest muscular dystrophy, affecting 1 in 3600 male births and 0.02% of the population. Ventilatory failure is an inevitable consequence; if untreated median survival is 20 years of age. Once a raised daytime arterial carbon dioxide level (hypercapnia) occurs, only 10% of patients survive one year. Imperial College researchers found that the introduction of non-invasive ventilation (NIV) when hypercapnia ensues extended one and five year survival to 85% and 73% respectively. Further, an Imperial-led randomised controlled trial showed NIV initiated at the time of nocturnal hypoventilation, before daytime hypercapnia, improves physiological outcomes. This management is now standard practice worldwide.
A decade of research at the University of Southampton has given thousands of people around the world suffering from dizziness and balance disorders access to a self-management resource that can alleviate their symptoms. Professor Lucy Yardley has pioneered the use of a Balance Retraining (BR) booklet to transform the means of delivering cost-effective, life-changing treatment previously offered to less than one in ten UK patients. The booklet, translated into several languages, has been distributed to patients and practitioners as far afield as China and Japan. Yardley's findings have contributed the bulk of good quality evidence to the Cochrane Review on vestibular rehabilitation.
We have developed the first ever physiotherapy guidelines (2008-) for contracted (frozen) shoulder (CFS). CFS is painful and disabling, affects c.9% of the UK working-age population,1 and costs the NHS > £13.5 million annually.2 Appropriate physiotherapy could improve outcomes and reduce costs by up to £2,000 per case.b
Endorsed by the Chartered Society of Physiotherapy (CSP), the guidelines have generated great interest and already influenced practice and will improve the quality and cost-effectiveness of clinical management, as well as patients' experiences. They will also provide a better framework for research into the condition and, as a `live', electronic document, will evolve with future research.
UCL research into end-of-life care has informed policy on palliative care for dementia patients and influenced NICE quality standards for end-of-life care in three areas: spirituality, psychological assessment, and advance care planning. The research has also been used by the charity St Mungo's to develop educational resources for services working with homeless people with advanced liver disease. Evidence collated by UCL on the importance of palliative care in heart failure has formed the basis of Caring Together, a £5m investment by Marie Curie Cancer Care and the British Heart Foundation to improve end-of-life care in heart failure. A review of the effectiveness of hospice care is being used to support commissioning bids for end-of-life care services.
The University of Nottingham's Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care has enhanced the understanding, implementation and uptake of advance care planning for end of life care. Its work has shaped public policy and influenced national initiatives that have improved quality of life and reduced the number of deaths in hospitals. The research has been cited as an exemplar by the World Health Organisation and has helped inform policymaking at European level. It has guided professional practice, educated care staff and contributed to a more positive public attitude towards talking about end of life issues.
Research carried out in the International Observatory on End of Life Care (IOELC) at Lancaster University led by Professor Payne has played a major role in influencing the strategic direction of service and policy development globally. IOELC initiated the systematic collation of development data and delivered the first research-based international analysis of the development of palliative care. For example, research on access to opioids in 12 resource poor countries in central and eastern Europe via the ATOME project has delivered major impact, leading to significant changes in legislation and policy and improved access to pain medication, and palliative and end of life care for millions of people around the world.
Congenital myasthenic syndromes (CMS) are inherited neuromuscular disorders caused by defects at neuromuscular junctions, which are often a result of acetylcholine receptor gene mutations. A subset of CMS patients (around 14% in the US and Europe) have limb-girdle myasthenia (LGM). This disease can be highly disabling with symptoms including increasing weakness of skeletal muscles. As a result of collaborative work between Newcastle and Oxford, it was determined that many LGM patients have a mutation of the Dok-7 gene (unrelated to the acetylholine receptor), and do not, therefore, respond to standard CMS treatments. Since then, a number of additional mutations have been discovered, and genetic testing is now available for the majority of known LGM-causative genes. Crucially, Dok-7 patients, and those with other non-receptor related mutations, can now be diagnosed accurately and treated effectively, with ephedrine and salbutamol (in the US, albuterol). This significantly improves these patients' quality of life by enabling them to walk and breathe unassisted.
The emergency care team at Warwick Medical School has a strong track record of high-quality health sciences research encompassing evidence synthesis, health-services research and clinical trials. Our trials of a 03b2-agonist (salbutamol) in acute respiratory distress syndrome (ARDS) have influenced therapeutic recommendations in the International Sepsis Guidelines (2013), reducing the use of this potentially detrimental therapy. Our cardiac arrest research informed the 2010 international guidelines on cardiopulmonary resuscitation (CPR) led to the generation of new intellectual property, and prompted industrial collaborations to build new technologies, such as TrueCPRTM (2013). These have led to improved CPR practice and improved patient survival. Furthermore, our research has led to major policy changes and to a redesign of UK emergency healthcare, improving cost efficiency, the patient experience and clinical outcomes (e.g. 95% of patients were treated within 4 hours - up from 65%; and people leaving without been seen reduced to less than 5%).
There are an increasing numbers of people living into very old age. At the same time there is a drive to enable people to live within their own homes for as long as possible. Consequently, health and social care services that previously would have experienced very few people with dementia now have this as part of their core function. Yet there is no tradition in these services of supporting people with dementia and there are many reports of inadequate care. For example, Valleley reports that over half of people living in extra-care housing with dementia were admitted to other care settings during the first two years due to challenging behaviour, conflicts with staff and other residents, and distress on the part of the person with dementia.i Similarly, hospital patients with acute and chronic medical conditions concomitant with dementia are consistently reported to experience poorer quality outcomes than patients with similar conditions without dementia.ii The research described below has had significant benefits for those living with dementia both in extra-care housing and in hospital settings, primarily at the national level but also internationally. It has enhanced quality of life for individuals living with dementia, improved the practice of professionals working with people with dementia and had economic benefits.