I am a PhD researcher at the University of Dundee. I also have cerebral palsy quadriplegia. I was born prematurely at 27 weeks and sustained brain damage which affects the mobility in my arms and legs and as result of this, I use a powered wheelchair.
The care I experienced as a child was excellent, but unfortunately this was not the case in adulthood. I’m now 28, and I have had to navigate a complex system in order to access the care I need. Unfortunately, not everyone with a neurological condition is able to navigate the system. They can therefore slip off the radar which often results in people inappropriately self-managing their condition. A person living with a neurological condition can experience chronic pain, mobility difficulties, spasticity and a number of underlying secondary conditions, which all need professional input.
“I was nervous initially as this was the first time I had done anything like this, but I knew I had a lot of knowledge to share about living with a neurological condition. It was important to me that the new standards were accessible to people living with such conditions.”
Through my campaigning for NHS services and support for adults with cerebral palsy, I lodged a petition with the Public Petitions Committee at the Scottish Parliament calling for a change in services. As a result of this, and my subsequent work with the Scottish Government, I was asked to be a member of a development group for the new General Standards for Neurological Care and Support.
The group consisted of health, social care and third sector professionals with a specialist background in neurology, physicians, and people with lived experience of neurological conditions. I was nervous initially as this was the first time I had done anything like this, but I knew I had a lot of knowledge to share about living with a neurological condition. It was important to me that the new standards were accessible to people living with such conditions. The standards are aspirational, but have been developed to try to overcome the problems that people living with a neurological condition face, for example the lack of a key professional to talk to about your specific condition, navigating a convoluted referral system, problems with accessing specialised, person-centred support and lack of continuity of care and coordination between health specialities. This means the person or carers are left to organise and communicate their needs to each professional as well as negotiate difficult transitions between services.
In addition, the standards raise awareness of neurological conditions and call on health boards and local authorities to provide high quality education and training for future and current professionals so they can understand the challenges that people living with a neurological condition face.
Being on the development group was refreshing, as health, social care and third sector professionals and patient representatives could listen to each other’s experiences and work together to find solutions to the problems highlighted. The standards are based on a lot of feedback from people with lived experience and are not drafted solely by healthcare professionals. It is good to know that my experiences count and are being used to help shape neurological care in Scotland.
I would urge anyone with a neurological condition to read and use these standards to empower change across services in Scotland in order to improve the care they receive, and ultimately improve their quality of life.
To read more about my experiences of living with cerebral palsy read: https://healthunlocked.com/livingpositively
Read the standards:
Healthcare Improvement Scotland website
Rachael Wallace is a PhD researcher at the University of Dundee and was a member of the development group for the General Standards for Neurological Care and Support.