Collecting signatures PE1952: Specialist services for patients with autonomic dysfunction
Calling on the Scottish Parliament to urge the Scottish Government to instruct Scotland’s NHS to form specialist services, training resources and a clinical pathway for the diagnosis and treatment of patients exhibiting symptoms of autonomic nervous system dysfunction (dysautonomia).
Previous action taken
I have spoken with Mr Daniel Johnson MSP on 09/05/22 regarding the current gaps in NHS services for dysautonomia. Mr Johnson offered to submit a motion for a members’ debate and to table written parliamentary questions.
Others have raised questions within Scottish Parliament and Westminster. On 1, 4 and 21 Jun 2016, MSP Ms Aileen Campbell’s responses to parliamentary questions revealed existing national gaps in diagnosing and treating autonomic dysfunction’s many conditions.
Autonomic nervous system disorders are common. Some cause mild symptoms, but many severely impact upon quality of life or significantly reduce life expectancy. Despite this, Scotland has no clinical pathway for dysautonomia and no specialist hub to diagnose and treat patients. Dysautonomia is a common complication of Long COVID.
With no autonomic clinics in Scotland, most patients do not have access to local or regional healthcare. A fortunate few may be referred to specialists via NHS England, but many are declined referral despite clinical need. Diagnosed patients returning to Scotland can find themselves unable to access necessary medication or follow-up. Treatment may be delayed for years, leaving sufferers unable to work or attend education. It is especially difficult for children to access dysautonomia healthcare.
As many doctors are untrained to recognise and manage symptoms of autonomic dysfunction, dedicated training resources are also needed.
The aims of this petition align with the commitments of the Neurological Care & Support Framework & the UK Rare Disease Strategy.
Further key info: https://dysautonomiapetition.wordpress.com/
What happens next?