OPTCARE Neuro

Long-term neurological conditions (LTNCs) are usually progressive conditions, although some have a sudden onset and affect approximately 10 million people in the UK. In the later or more advanced stages those affected can have profound symptoms and problems. Unfortunately, their care can be suboptimal. Palliative care has been suggested in NHS policy documents, such as the National Service Framework for LTNCs (quality standard 9), as a way to better help people severely affected by these illnesses. But it has not been rigorously tested, and various different models operate. Usually people only receive palliative care at the very end of life. An alternative to this is Short¬¨-term Integrated Palliative Care(SIPC), which does not require patients to be close to death or dying and yet offers short term personalised palliative care, integrated with neurology and rehabilitation services, to improve symptom management and promote patient and family strategies in managing the condition. This approach was tested in a phase II trial for people severely affected by multiple sclerosis. Although some services are starting to provide this type of support it has not been tested more widely. The purpose of this study is to examine the effectiveness and cost effectiveness of SIPC in improving symptoms and quality of life, and reducing hospital utilisation and caregiver burden for people severely affected by LTNCs. These will include Multiple Sclerosis (MS), Motor Neurone Disease (MND), Idiopathic Parkinson’s Disease, Progressive Supranuclear Palsy and Multiple System Atrophy. The study will determine whether an earlier referral to palliative care has an effect, whether this effect lessens over time and also when re¬¨ferral and or re assessment for palliative care needs should be undertaken. It will also help understand ways in which specialist neurological teams can work most effectively with their local specialist palliative care teams. This study is taking place in a number of sites throughout the UK. For further details about the study please contact the study co-ordinator nilay.n.hepgul@kcl.ac.uk