As part of Essential Tremor Awareness Month in March, there is an urgent need to raise awareness around the fact that more than 1 million of people in the UK are affected by essential tremor1 and over 4000 patients currently live with essential tremor in Scotland.

Edinburgh
L-R: Campaigner Mary Ramsey
 and NTF Support Groups Coordinator Jackie Farrell

On the 16th of March, Mary Ramsey, a petitioner from Inverness has taken her 'Essential Tremor' campaign to the Scottish Parliament accompanied by the National Tremor Foundation, clinicians, and fellow patients. The campaign raises awareness on the need for better treatment, and to highlight the potential of magnetic resonance-guided focused ultrasound (MRgFUS) becoming available on NHS Scotland. MSPs heard from patients who have successfully reduced their tremor, and from clinicians who delivered MRgFUS treatment. Mary Ramsey, who also has essential tremor herself has campaigned for disability rights and equality for more than 40 years. 

“I have lived with tremors all my life and it has made an impact on all my daily life activities. Those of us with essential tremor deserve a better solution. Since I have started my campaign in Scotland, England has two centres which now use MRgFUS whereas Scotland does not. With long waiting lists, patients must wait months and travel 100s of miles to get treatment,” said Mary Ramsey, “That’s why I am hoping that the campaign will highlight just how much of an impact MRgFUS has on patients and will assist the Scottish Government in making decisions to improve thousands of lives. I really encourage those with tremor to speak to your GP about it and talk to others to raise awareness around this condition.”

MRgFUS offers effective non-surgical treatment as a day-case procedure and avoids permanently implanted electrodes and a programmer, enabling patients to quickly return to work and daily life – making a significant improvement on people’s lives. Newly released data from 10,000 patients and 5 years of MRgFUS treatment shows that 73% postural tremor reduction in patients remained for up to 5 years2. MRgFUS is currently funded via NHS England for the treatment of medication-refractory Essential Tremor and is currently only available on the NHS at St Marys hospital in London and The Walton Centre in Liverpool. MRgFUS is also available privately at Queen Square, London and at Ninewells Hospital, University of Dundee. Implementation of a treatment site in Scotland by the NHS, will ensure patients have access to innovative, life-changing treatment. 

Despite Essential Tremor Awareness Month coming to an end, the fight to bring awareness doesn’t stop here. It has been an absolute privilege to help support Mary in her campaign and we are excited to see how we can work with the NHS to get this treatment off the ground in Scotland! We would like to share our gratitude and thank all of the MSPs, clinicians, guests and teams involved in organising the Essential Tremor Scottish Parliamentary event, and a special thank you to our hosts Rhoda Grant MSP and Jeremy Balfour MSP

Further reading