12th January 2015

The Invisible Patients: Revealing the state of neurology services

The Neurological Alliance is delighted to announce the launch of its new report, The Invisible Patients: Revealing the state of neurology services . Bringing together the findings of the Neurological Alliance’s inaugural quality of commissioning audit and neurological patient experience survey, the report identifies significant variation in the quality of the commissioning of neurological services among clinical commissioning groups (CCGs). Findings include:

  • Only 14.7% of CCGs have assessed local costs relating to the provision of neurology services
  • Only 20.4% and 26.2% of CCGs respectively have assessed the number of people using neurological services and the prevalence of neurological conditions within their area
  • Only 33% of CCGs obtain vital feedback from patients in regards to the neurological services they commission
  • These issues have a significant impact on patients’ care, with 58.1% of patients having experienced problems in accessing the services or treatment they need.

In response, The Invisible Patients sets out a number of recommendations including:

  • Every CCG should collate up to date and accurate local neurology data, underpinned by routine and rigorous assessments of the prevalence of neurological conditions and of the number of people using neurological services locally
  • All CCGs should ensure that mechanisms are put in place to encourage and capture patient feedback and input in regards to the quality and development of local neurology services
  • CCGs should work in partnership to identify clinical and research trial opportunities locally and support the appropriate sharing of information on such opportunities with patients

Commenting on the report, the Neurological Alliance’s Chief Executive, Arlene Wilkie, said:

“For too long, people living with neurological conditions have been the ‘invisible patients’, often marginalised by a system that doesn’t understand their conditions or their needs. This has to change. I am delighted that this report provides a vital first step in exposing the true state of neurological services today. It is time for the health and care system to open its eyes to the needs of the millions of people who live with these complex and challenging conditions. They must be invisible no longer.”

Making the data available

The neurological patient experience survey and quality of commissioning audit underpinning ‘The Invisible Patients’ produced a wealth of data which we are committed to sharing with the neurological community, in order to support better understanding of neurological services throughout the country.

In order that we were able to ensure the data captured during the report was made publically available, we made extensive efforts to ensure the data we collated was entirely anonymised. First, we removed identifiable fields from the patient experience survey, such as elements of a respondent’s demographic and free text boxes.

Second, we removed conditions where no prevalence figure was available and redacted responses for these conditions. Even where incidence figures are known for a condition, we felt it important that people could only access information where it is stated with certainty that there is a large enough patient population within each area to avoid identification.

The removal of free text boxes and of data for certain conditions, replaced with a statement, ensures that specific clinicians, providers or timeframes are not mentioned, which could otherwise lead to the identification of a particular respondent. Whilst we have retained geographic location within the dataset, these are based on very broad regions such as ‘London’ and ‘Cheshire and Mersey’ which, coupled with the response rate overall, removes ways to identify a specific patient from the data.

These steps led to the removal of 795 responses from the database, which means the vast majority of information is publically available. For those conditions where information has been redacted we will discuss with the relevant associations how they may have access to the data, if they wish to, and will make arrangement for appropriate guarantees of confidentiality.

Neurological patient experience survey dataset available here

The neurological patient experience survey was hosted online using the survey development programme, SurveyMonkey, and opened on 30 June 2014 until 17 September 2014, receiving 6,916 responses in total.

The manner in which the data has been collated means a wealth of analysis can be undertaken across the patient pathway on both a condition specific and regional level in particular.

In a number of instances, individuals have identified as being diagnosed with a number of neurological conditions, reflecting their often complex, unpredictable and indiscriminate nature.

Quality of commissioning audit CCG dataset available here

The quality of neurology commissioning audit was submitted to all CCGs and NHS England in June 2014. With a 91% response rate, this dataset presents an opportunity to understand the quality of, and variation in, neurology commissioning across the country.

Back to top