Published: 18/03/2018 19:00 - Updated: 18/03/2018 19:20

NHS urged to invest in scanner to combat tremor condition

Written byIain Ramage

 

Mary Ramsay
Mary Ramsay.

AN Inverness grandmother with a rare condition that gives her the shakes and fear of ridicule from insensitive strangers is urging health chiefs to invest in special equipment to help sufferers.

She is reluctant to venture out for risk of taunts – and believes many other people suffer the same torment.

Mary Ramsay (61) has an incurable nerve disorder. As a last resort, she opted to have battery-powered electrodes implanted in her brain to lessen her tremor.

While she considers it "a Godsend", the treatment may be too invasive for others.

It also meant a 560-mile round trip to a Newcastle hospital because the procedure is not available in Scotland. And despite being on benefits she had to stump up part of the travel costs.

Mrs Ramsay has suffered Essential Tremor, which causes uncontrollable shaking, since birth.

Now dependent on a wheelchair, she plucked up the courage for the emergency procedure in 2004 because of worsening ridicule about her shaking. At her lowest ebb, it left her contemplating suicide.

A parliamentary motion lodged by north Labour MSP Rhoda Grant urges NHS Scotland to find £1.5 million for ultrasound equipment that would benefit patients in Scotland with a non-invasive alternative procedure.

Mrs Grant is seeking the necessary cross-party support to guarantee a parliamentary debate on the issue.

The specialist technology can be used in conjunction with existing MRI scanning equipment to allow surgeons to perform incisions in the brain using ultrasound beams.

It may benefit people with Parkinson’s disease and possibly multiple sclerosis patients.

There is only one ultrasound device of its type in the UK. The waiting list for its use, at St Mary’s Hospital in London, is up to four years.

Mrs Ramsay, who helps with online charity work to further the cause, believes the funding process would speed up if politicians witnessed the effects of tremor on sufferers.

"I work for the Scottish Tremor site online and I’ve had phone calls from almost 40 people across Scotland desperate for this treatment," she said.

"People don’t want to go down the route I did, with a treatment known as deep brain stimulation. They won’t have someone poking about their brain.

"If the politicians would like to meet me for more information I’m willing to do that. If they see first-hand what tremor is like they’d understand."

Mrs Ramsay, whose mobility and energy levels are limited, has found there is a distinct lack of knowledge about her condition even among professionals.

"A lot of people with the condition don’t want to go out because people stare," Mrs Ramsay said.

Rhoda Grant said: "Folk in the Highlands are used to travelling distances for health care but shouldn’t have to go to another country to access it.

"To have this facility in Scotland would still mean some disruption for patients, but it would definitely benefit the whole of the country.

"Mary remains undaunted and I have such a great admiration for her."

According to the charity, the National Tremor Foundation, the recent development of "ultrasound thalamotomy" is a lifeline for patients with medication-resistant Essential Tremor.

Under the procedure, a predefined small volume of brain tissue containing nerve cells causing the tremor is destroyed.

 It is performed while the patient is awake and without anaesthetic.

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