Inverness woman's petition calling for improved Essential Tremor treatment is considered again
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AN Inverness woman's petition for improved treatment for the medical condition essential tremor, has again been before a Scottish Parliament committee.
The petition was lodged by Inverness resident Mary Ramsay calling for the provision of magnetic resonance-guides focused ultrasound (MRgFUS) technology to be made available through the NHS in Scotland.
The Scottish Parliament Citizen Participation and Public Petitions Committee today (Wednesday April 20) considered the petition.
Mrs Ramsay, the chair of the Scottish Tremor Society, has been fighting for the improvement of care to the 100,000 people in Scotland who are living with essential tremor.
However, few patients are able to access the transformative deep brain ultrasound treatment which could be available in Scotland after a University of Dundee fundraising campaign. The treatment uses sound waves to help destroy tissue that can prompt unwanted movements experienced by those with the condition.
The treatment is currently available under the NHS in London, and in various countries around the world.
In Scotland it is currently not considered part of "standard care" for essential tremor said Labour's Rhoda Grant.
People living with essential tremor face having to travel to London for assessment and treatment. The waiting lists south of the border are so long that NHS England have been looking to create another centre to cope with demand.
Patients are currently waiting for the National Special Services Committee (NSSC) and health bodies to evaluate MRgFUS treatment to allow it to be granted "standard care" status in Scotland allowing them to access the equipment available in Dundee.
The Citizen Participation and Public Petitions Committee confirmed that they are still waiting for critical information from the NSSC.
It has transpired that the NSSC are expected to resume applications later this month.
Ms Grant, Scottish Labour MSP for the Highlands and Islands said the Scottish government have yet to commit to funding any MRgFUS treatment.
The committee have agreed to once again write to the NSSC to ask for details regarding timescales and the decision-making process should an application be successful.
Commenting on the hearing today Ms Grant said: “The lack of progress in the response from the Scottish Government is disappointing. We hope to hear some more positive movement from the NSSC this summer.
“People living with essential tremor have been waiting a long time for improved access to treatment and care. They face long waiting lists and often long journeys to London for treatment that should and could be available here in Scotland. We have the equipment and knowledge here in Scotland.
“It is vital to keep this petition open whilst we wait to hear what outcome is made by the NSSC. It is frustrating that patients are continuing to be let down by the Scottish Government’s inability to make critical decisions to improve patient care and treatment.”
A Scottish Government spokesperson said: “Trial work has been done by the University of Dundee and Ninewells Hospital for nearly a year which will help inform the evidence base for treating essential tremor.
“Since it has been established, the Transcranial Magnetic Resonance Guided Focused Ultrasound service has screened a number of patients who have been offered formal assessments with a view to treatment. Following assessment, the patients are discussed in conjunction with the National Deep Brain Stimulation service in Glasgow to ensure the treatment proposed is likely to offer benefit. The service has now treated a number of patients and continues to do so.
“National Services Division continues to engage with the clinical team in Tayside with a view to the refreshing the previous application for a national designated service in Scotland with potential submission this financial year.
“In the meantime, NHS Scotland is engaging with both the clinicians in Dundee and colleagues in NHS England on how treatment might be made available more widely to eligible Scottish patients.”
