Neurological Alliance pleas for parity of priority in rare neuro conditions


13 Nov 2020

Neurological Alliance released a new report this month highlighting the need for parity of priority for those living with a rare neurological condition.

The comprehensive report, 'Out of the Shadows', outlines the current situation for those living with a rare neurological condition, highlighting that the world 'rare' may be misleading with one in 17 people experiencing a 'rare' condition at some point in their lives.

Digging into the current guidance available and the lived experiences of those the report then outlines 20 key recommendations for change across the trajectory of care from diagnosis onwards, and for mental, physical and social elements of care. It also provides an action plan.

The headline calls for change are:

  • Changed perceptions around rare neurological condition: just because they are complex does not mean they cannot be managed well, says the report. People with rare neurological conditions are entitled to equal access to care and treatment.
  • Speedier access to specialists and a diagnosis: 4 in 10 charities surveyed recently for the report said diagnosis of the people they represent takes, on average, 3-5 years. The report points out that there needs to be greater awareness of rare neurological conditions in primary care, so people are more quickly referred on for a specialist assessment when they have neurological symptoms – and they can benefit more quickly from available treatments and support.
  • Faster access to new treatments: the UK often lags behind other countries in Europe when it comes to approving and funding new treatments for rare neurological conditions. For example, the Batten Disease Family Association told the Alliance in our recent survey: “The NICE process takes literally years of upset and our families don’t have years; two children died waiting to access Brineura.” Spinal Muscular Atrophy UK also told the Alliance “The paediatric roll out of Spinraza has been quite good, but the treatment roll out for adults hasn’t progressed at all well.”
  • Improved mental health support: less than a third of people with rare neurological conditions feel they are getting the mental health care they need according to the Alliance’s 2019 Patient Experience Survey. Again, in our more recent survey of September 2020, all 10 charities who responded reported that the mental health needs of those they represent, were either ‘not being very well met’ or were ‘not being met at all’.
  • As a matter of course, information should be provided to people with rare neurological conditions and/or their families on diagnosis: again, the Alliance’s Patient Experience Survey 2019 found that just a third of people (or families) with rare neurological conditions are provided with written information about their condition at the time of diagnosis to help them understand more about their condition and care choices.
  • High quality social care and home adaptations are not just ‘add on extras’ for those that need them: the report points to recent research by the Motor Neurone Disease Association (MNDA) which found that some people with motor neurone disease do not always receive the home adaptations they need before they pass away, due to lengthy delays in service provision and the cost. People with rare neurological conditions, and their families, need proper well-funded support in the community.

To read the report in full, visit Neurological Alliance's website or find the pdf here.

(Quotes shown in the 2 figures are taken directly from the report, 'Out of the Shadows, Neurological Alliance, Nov 2020.)