Gathering views on general standards for neurological care and support
In September 2018, Healthcare Improvement Scotland published draft standards for neurological care and support. Healthcare Improvement Scotland carried out its own extensive consultation on the content of the draft standards, but also asked us to gather the lived experiences of people with a neurological condition – particularly those living in remote and rural areas, or who were part of a local community group or pain management group.
The standards apply to anyone living with a neurological condition in Scotland, and health and social care providers will use them to demonstrate that they are delivering high-quality services. The standards set out a level of care and support for all adults regardless of the neurological condition, geographical location or an individual’s personal circumstances.
Between October and December 2018, we heard from a total of 541 people across Scotland. 198 people took part in 24 discussion groups and a further 343 people completed an online survey or took part in a one-to-one interview.
This report summarises what people living with a neurological condition in Scotland told us. Many described positive experiences of diagnosis, compassionate support and ongoing care with specialist nurses. Others described a less positive experience, with delays, unnecessary tests, a lack of information and poor care planning.
We would like to thank everyone who shared their experiences, as well as the partner organisations who accommodated discussion groups, and provided practical support to make the engagement accessible and meaningful for all participants.
The feedback from participants was shared with colleagues in Healthcare Improvement Scotland and it helped to inform the final standards for neurological care and support, published on 28 March 2019.
The importance of family and carer support was a strong theme from the views gathered. This has been made more explicit throughout each of the seven standards.
Many people discussed mental health support. Additional criteria have been included within the standards, detailing appropriate access to emotional, cognitive, mental health and wellbeing support – as well as specialist interventions such as neuropsychology and neuropsychiatry.
Information about how to re-access services was important for people. A new criterion was added which requires that people are told who to contact for further advice and access to support and services throughout the course of their neurological care.