Patient feedback around development of a Neuromuscular Complex Care Centre (NMCCC) in the North East

Survey aim: To better understand the unmet needs of patients with neuromuscular disorders and contribute towards the development of a Neuromuscular Complex Care Centre (NMCCC) in the northeast of England

Patients with neuromuscular disorders require complex care, typically attending multiple outpatient appointments over a 12-month period. Previous reports suggest that this disjointed care may lead to unnecessary and prolonged hospital admissions resulting in a stressful experience for patients.

In 2014, the UK’s first Neuromuscular Complex Care Centre was launched at Queens Square, UCL London with the aim to improve quality of care, provide better coordinated care, reduce the number of unplanned admissions, and ultimately reduce costs. Following the success of this unit, we are looking to establish a similar Neuromuscular Complex Care Centre in the North East. The proposed model suggests a day unit and will primarily focus on developing a one-stop shop coordinated care unit. The unit will be patient centred and bring together professionals from different areas as required and tailored to patient needs. The aim is to provide equitable, proactive and coordinated care to the more complex patients and reduce outpatient care and delays to accessing care.

As a key stakeholder we would like to invite you to provide your feedback to understand the unmet needs of patients and contribute towards the development of an NMCCC in the North East. By filling out this 10-minute anonymous survey you will help inform the design of a fit for purpose patient service.

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