The Neurological Alliance has consistently heard the same messages about what people with neurological conditions want from their care: a timely, accurate and well communicated diagnosis, information and support throughout the process enabling individuals to be involved in decisions about their care, and for professionals providing care to work together. Our latest research, published today, involved over 7,000 neurology patients. It reveals that not only is patient experience of care consistently not matching up to patient expectations, but that experience of care has got worse across all key measures since our inaugural patient experience survey in 2014.
Perhaps the most startling statistic is that 42% of neurology patients surveyed saw their GP five or more times before being referred to a neurological specialist. This is up from 31.5% in 2014. Early diagnosis of neurological conditions is critical; it can slow down neurological damage and the rate of disease progression, it can also improve survival rates and quality of life. Given the stakes are so high in terms of patient outcomes, I believe it is unacceptable that delays are experienced at every stage in the pathway to diagnosis of a neurological condition. Almost 20% of patients waited 12 months or more to see a neurological specialist, 22% waited more than six months for a diagnosis after seeing a specialist and almost 10% waited a further 12 months or more to begin treatment after diagnosis.
Another issue our research highlighted is that the way in which diagnosis is communicated, and the quality of the communication between patient and health care professional, is an important factor in overall experience of health care. Just 52% of patients surveyed believe that their diagnosis was communicated appropriately, this is down from 57% in 2014. A common theme was that patients were told their - often life changing - diagnosis in a letter or a brief phone conversation. This poor communication is compounded by a lack of information and support following diagnosis. 46% of patients surveyed said they were dissatisfied with information they have received from professionals about their care and treatment options. It is perhaps no wonder that patients tell us they are increasingly turning to Dr Google for information. Furthermore, 53% of patients were dissatisfied with signposting they had received from health care professionals to sources of voluntary sector support. I find this last statistic most frustrating given the high quality of literature produced by Neurological Alliance members aimed to support patients at every step along their health care journey.
Care and support planning is a critical component of person centred care, championed by National Voices and its members. The impact of a neurological condition can vary widely; the same condition can affect one individual differently from the next, and a condition can impact differently on the same individual differently over time. Furthermore, more, 53% of patients surveyed reported living with at least one other co-morbid condition. Given the individualised nature of neurological conditions, it is difficult to see how neurology patients can be at the centre of their care if 85% of patients have not been offered a care plan. This is up from 72% of patients in 2014. Our research also revealed that only 56% of patients feel their health and care professionals work well together at least some of the time, this is down from 67% in 2014.
With resources becoming tighter, it's clear that the system is struggling more than ever to provide the timely support needed to ensure the best possible outcomes for people living with neurological. There is hope on the horizon with a number of positive initiatives in the early stages including the establishment of a new National Neuro Advisory Group, a commitment to develop new commissioning guidance and pathways for neurology, the dissemination of Right Care Neurology Focus Packs to CCGs and the development of a new NICE guideline for the management of suspected neurological conditions in primary care. These new opportunities will take time to deliver results; particularly given neurology is starting from such a low baseline in terms of the need for improvement. Patients must not wait much longer to see these initiatives translate to change on the ground. In our new report we are therefore setting out a number of recommendations, challenging the whole system to work together to ensure that by 2018 we can report a turnaround in patient experience, with all people with neurological conditions accessing the care they need and deserve.