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People living with Essential Tremor Face Long Waiting Lists

Highlands and Islands Labour MSP Rhoda Grant has commented on the lack of progress on improvements to care for people requiring treatment with essential tremor.

Essential tremor (ET) is a neurological disorder that causes your hands, head, trunk, voice or legs to shake rhythmically. It is often confused with Parkinson’s disease.

Essential Tremor Disorder

The Essential Tremor treatment in Scotland petition came before the Scottish Parliament’s Citizen Participation and Public Petitions Committee on Wednesday 20th of April.  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.

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 England, in London, and in various countries around the world.  Yet, in Scotland it is currently not considered part of ‘standard care’ for Essential Tremor.  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.  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.

Rhoda 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 National Special Services Committee 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 National Special Services Committee.  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.”

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