In 2014, UCLH Charity funded and partly project managed the implementation of the world’s first Neuromuscular Complex Care Centre for UCLH and since then UCLH has redefined a whole new service to this brand new population of patients, who would have previously died from their condition in late teens or early adulthood.
Dr Ros Quinlivan, consultant in neuromuscular disease says that clinical developments have extended the average life span for many neuromuscular patients. She observes that since improvements in care, such as the introduction of mask ventilation and improvements in cardiac care, many of these patients are living longer. In the 1960’s the average age that patient with Duchenne dystrophy died was fourteen. Now it is approximately thirty, with some patients living into their forties.
“Most of the conditions have no cure, so the goal of treatment is to improve symptoms, improve quality of life and lengthen life.” Ros says that medical developments that have lengthened life, and likewise aspects of care should enhance day to day life by offering care that is easy and accessible.
Ros explains that there are a wide range of different neuromuscular disorders; many are rare or even ultra-rare. People with neuromuscular disorders may experience a wide range of issues including heart function or ability to breathe meaning that some require home ventilation.
Other problems include chewing and swallowing difficulties, bowel dysfunction, renal and bladder dysfunction, endocrine problems, learning difficulties, autism, deafness and visual impairment. Muscle weakness and wasting together with joint contractures means that most people with a neuromuscular condition will struggle with mobility.
“What’s special about the neuromuscular complex care centre is that it applies a holistic approach to meet the complex needs of these patients.” Ros explains that it’s about providing a complete care package for the patient by offering an integrated approach to caring for patients who attend the NMCCC. This means that the centre offers specialist assessments in neurology, cardiology, gastroenterology, respiratory, clinical-psychology, physiotherapy, speech and language therapy, dietetics, palliative care etc.
The centre was designed by Llewelyn Davies, leading healthcare architect and the project was overseen by Peter Burroughs, development director for UCLH Charity. According to Peter, all design features were based on advice given by a young man with Duchenne muscular dystrophy and the business case was supported by data from an audit of unplanned admissions of neuromuscular patients across London and the South East coast by Professor Michael Hanna and Dr Fatima Jaffer.
The audit was based on 12 hospital trusts and totalled 395 unplanned admissions of neuromuscular patients, 10.9% of which were ICU admissions and 43% were determined avoidable. “These stats also indicated fragmented care, a lack of surveillance of the neuromuscular disorder and a lack of specialist services.” Ros adds that it has been estimated by MDUK charity that unplanned admissions on this scale we also costing the NHS an extra £81M per year, so the new model also saves money for the NHS.
The UCLH holistic model demonstrated a vast improvement in patient experience and outcomes after 12 months as highlighted by a patient survey which revealed that 79% of patients reported their care to have improved. 86% reported better coordination and 56% of those admitted more than once reported a reduction in acute hospital admissions since attending the NMCCC. These figures included 10% of patients who were newly diagnosed and so could not comment.
Philip Brading, Chief Executive of UCLH Charity says, “We were very pleased to provide grant funding for this centre. We continue to work with all stakeholders to encourage the adaption of this model of care across the UK.”
Ros comments, “For this truly Rolls Royce service the centre was nominated for a prestigious HSJ award and has sparked international interest with visitors from the USA and Europe.” She adds that essentially UCLH has set a new care model, and we hope that other institutions will follow.