Forwards into 2021.


Since the start of the year we have been discussing our priorities as a team for the Alliance and setting objectives for 2021. At the beginning of January we welcomed back Katharine McIntosh as our policy manager and said farewell to Judy who worked so hard during 2020 to cover for Katharine and much more including producing the report ‘Out of the shadows: what needs to change for people with rare neurological conditions’.

Our priorities

People with neurological conditions, their friends and families, healthcare professionals and patient groups continue to be hit hard by the impacts of COVID-19.

At the same time, fundamental changes to how neurological services are commissioned will be further explored throughout the year. Our priorities are therefore:

  1. Understanding and trying to reduce the impact of the pandemic on people with neurological conditions. We will do that by gathering evidence of how people are being impacted, and presenting it to key decision-makers in NHSE/I and beyond.
  2. Launching the fourth national neuro patient experience survey
  3. Ensuring changes to commissioning reflect the needs of people with neurological conditions, by engaging with processes to legislate and establish Integrated Care Systems (ICS) across England

The team’s focus

As individuals we are focussing on the following;

Georgina is committed to redoubling our efforts to improve neurological care. We can no longer deem neurology less of a priority, or ‘too hard’ to improve. The evidence is clear – services have been hit hard by this pandemic, and many people with a neurological condition have experienced delays or cancellations to care. Services are also being provided differently, for example how people with suspected neurological conditions are referred for support. We need to learn from those areas of change which have proved beneficial and adopt them at scale. Crucially the roll out of new models of care is equitable, so that no person with a neurological condition is left behind.

Caroline will continue to work quietly behind the scenes as our administrator. She is hoping  to build on the success of last year’s NeuroFest by organising events to give people in our member charities the chance to discuss key issues, network and to support each other.

Katharine is looking forward to further strengthening our evidence base this year, including the next iteration of our patient experience survey, and a workforce gap analysis. Also, to some of the influencing work we have in the pipeline, including developing ‘top tips’ for engaging with ICSs.