16 August 2019


Toolkit on progressive neurological conditions published


People with progressive neurological conditions too often experience delays in diagnosis and treatment, fragmented and uncoordinated services, limited availability of neurospecialist rehab and reablement and a lack of psychosocial support. NHS RightCare have published a progressive neurological conditions toolkit aiming to help address these issues for people with:

  • multiple sclerosis
  • motor neurone disease
  • Parkinson’s disease
  • multiple system atrophy
  • progressive supranuclear palsy
  • corticobasal degeneration.


The toolkit is aimed at local health systems, and provides a set of resources to support them to concentrate their neurology improvement efforts. It provides a national case for change, outlining both the challenges to improving care, and the opportunities in doing so. These include improved care for people with neurological conditions,and savings to the NHS.


For each topic included, toolkits aim to provide health systems with:

  • a high-level overarching national case for change
  • priorities for improvement and key high impact interventions along a pathway
  • underpinning guidance and evidence
  • implementation resources to help make change on the ground; and
  • practice examples that show the potential in population health approaches.


If implemented successfully, the toolkit should help support people with neurological conditions to be managed closer to home and ensure that people get the right care at the right time. It should also help to reduce variation – the post code lottery whereby care is significantly better in some areas than others.


Through our recent survey of people with neurological conditions, published in our Neuro Patience report, The Neurological Alliance recognises many of the challenges outlined in the toolkit. Sarah Vibert, Chief Executive of the Alliance, said:

“We have high hopes that this toolkit will enable local health economies to begin to make the difference needed for people with the conditions named, and urge them to refer to it regularly. We’re pleased that the toolkit has been jointly produced by NHS RightCare and a number of our member organisations working in partnership. While it doesn’t address all progressive neurological conditions, we hope that it will be extended in the future, and will work to influence this as the opportunity arises.”


Similarly, the toolkit was welcomed by the Neurological Alliance’s member organisations.


Sally Light, Chief Executive and of the Motor Neurone Disease Association and Vice-Chair of The Neurological Alliance, said: “We welcome the launch of the new Rightcare Progressive Neurology Toolkit. We hope it will prove to be an important and valuable resource to help commissioners improve pathways of care, and deliver the best possible outcomes for people living with MND and other progressive neurological conditions.”


According to Val Buxton, Director of Strategic Intelligence and Excellence at Parkinson’s UK and a Neurological Alliance Trustee, “It’s crucial the toolkit is used to secure much needed improvements in progressive neurology services. Far greater attention needs to be focused on gaps in expert multi-disciplinary care and psycho-social support that a have such an impact on the lives of people affected.”