The forgotten millions

The Forgotten Millions: reforming social care services for people living with neurological conditions

A new report by Sue Ryder, The Forgotten Millions: reforming social care services for people living with neurological conditions, presents an in-depth analysis of the strengths and weaknesses of local authority neurological care provision.

Freedom of Information requests were issued to local authorities in England to determine if there are sufficient strategies, resource allocation and data collection processes in place to plan appropriate services for people with neurological conditions. 


Key findings

  • Only 5% of 131 responding Local Authorities know how many individuals with any neurological condition they care for (152 local Authorities commission social care services in England in total)

  • Despite necessitating different care requirements, only 6% of Local Authorities categorise all specific neurological conditions (including motor neurone disease, Parkinson’s, multiple sclerosis and cerebral palsy)

  • Only 10% of Local Authorities have an agreed commissioning strategy for people with neurological conditions 

Key recommendations

Strong leadership

  • There should be greater leadership for neurology at a national level. In addition, the NHS Commissioning Board should develop an integrated strategy for people with neurological conditions.
  • Health and Wellbeing Boards should ensure that a section of their Joint Health and Wellbeing Strategy is devoted to scoping services specifically for people with neurological conditions.

Robust data collection

  • Local authorities should collect and record information about an individual’s condition when they are conducting assessments. 
  • Local authorities should amalgamate this data to produce detailed condition – specific data about the number of people with neurological conditions for whom they provide services. This should be placed in the Joint Strategic Needs Assessment. 
  • This data, alongside other information about local demographics, should be used to develop the Health and Wellbeing Boards’ Joint Health and Wellbeing Strategy, the local authority’s Market Position Statement and Clinical Commissioning Group’s plans.  

End the postcode lottery

  • The government must ensure that the draft Care and Support Bill enshrines not only consistency in assessment, but also consistency in approach to allocating resources and services. 
  • A care calculator should be developed for people living with neurological conditions. 

Recognised standards

  • There must be improved choice for those living with neurological services they receive. These should cater for diagnosis and needs in order to help people create a personalised care plan. 
  • Local authorities should be expected to provide transparent, accessible information and advice, and should be held to account by a ‘kitemark’ scheme.
  • Local information services should be provided in an integrated way by working with health services and where possible including a broader range of information. 

Read the full report

You can download the full report here: The forgotten millions (pdf)

For more information on the report contact the Sue Ryder policy team - email charlotte.good@sueryder.org