Experts by experience

Neurology Academy exists to transform healthcare - in order to improve the lived experiences of people with neurological conditions.

Knowing about a condition, even learning how it can affect someone, is not the same as understanding what that means on a day to day basis. We believe that compassion is an essential component of optimising neurology care and that it can only come through engaging with those living with neurological conditions.

We do this in lots of different ways.

Expert speakers

We are proud to have invited some brilliant speakers to our national conferences who bring an incredibly rounded view of healthcare to the table - those with both expertise as a healthcare provider, and as someone living with a neurological condition. Caroline Wyatt, a broadcaster who lives with MS, addressed delegates at our Raising the Bar 2019 national meeting. Incredibly well received live, her talk has subsequently had over 800 views on-demand.

National sports personality and broadcaster Alastair Hignell, and chief executive of the Royal Free Caroline Clarke have both inspired previous conferences with their eloquent and experienced insights into living with MS and the healthcare system which supports them,

Our MasterClasses include a session where expert speakers living with a neurological condition bring a broad understanding of the lived reality of those conditions to our MasterClass delegates.

The sessions on our Parkinson's, MS and Neuropharmacy MasterClasses where people living with Parkinson's or MS talk about their experiences of diagnosis, daily living, the challenges they face and the way they overcome them, are often some of the highest rated sessions in the course.

Consultation on project work

Raising the Bar for MS is a national project to improve care and reduce unwarranted variance in MS services. National voluntary organisation Shift.ms, led by and comprising people living with MS, are a core member of the steering group, are leading on improving education and self-management through developing an online course, and support a number of the other workstreams on an ad hoc basis.

The Living well with MS workstream within Raising the Bar for MS has a number of people living with MS or other neurological conditions as part of their core working group, as well as a separate reference group of 26 people living with MS who are supporting development of a digital wellness questionnaire for use in clinical practice.

Bringing clinical practice to life

We know that understanding how working practice affects someone's life can be a powerful motivator for change. When we launched our recently developed spinal muscular atrophy (SMA) paediatric pathway, for example, interviews with Portia Thorman, parent to Ezra who was diagnosed with SMA type 1 as a baby, gave essential context to the pathway.

The importance of early detection, diagnosis and access to treatment is so much clearer when understood in the context of someone's life, and their daily reality. Ezra's own experiences bring a depth of understanding to the clinical pathway and ensure compassion is a key part of care.

Encouraging stakeholder involvement in local work

Often, local services are experienced very differently to the way we think that they are provided. We are always keen to see education lead to transformation, and our MasterClasses feature a workplace project. We are keen to encourage those projects to liaise with stakeholders in their services wherever appropriate, and to hear from people accessing their services more particularly.

Our recent Mild cognitive impairment (MCI) course offered an entire module on public and patient involvement led by Dr Sarah Fox and voluntary sector organisation Dementia United. By equipping healthcare professionals on the course with the tools they need to effectively involve those with MCI in their work, we hope this -and future quality improvement projects - will involve those directly receiving their services.

Resources directly for people living with neurological conditions

Whilst our main focus is education for healthcare practitioners, we are aware that our unique community of clinical experts can offer a helpful space for people with neurological conditions to seek support or information themselves.

During the coronavirus pandemic, we held a number of webinars for healthcare practitioners, and offered some sessions for those affected by neurological conditions as well. A session supporting mental health, 'An ask the experts in MS' which spilled into a second session to cover all of the questions asked, and a practical session for those caring for someone with dementia were all well received by those attending them. These were also helpful to the professionals in attendance, enabling them to understand some of the core concerns of those affected by MS or dementia at the time.