David Stewart

Campaign for Focus Ultrasound Device

16 May 2018

David's speech in the member's debate by Rhoda Grant MSP

Rhoda 's motion for debate reads :

Campaign for Focus Ultrasound Device

That the Parliament notes the support for Ninewells Hospital’s campaign to raise funds for the purchase of a £1.5 million focus ultrasound device, which it believes would benefit all patients in Scotland, including in the Highlands and Islands; notes that this piece of medical technology can be used with the existing MRI scanning facility to allow surgeons to perform very small incisions within the brain using ultrasound beams; considers that this can be useful for patients with essential tremor and Parkinson’s disease, and potentially for people with multiple sclerosis who have severe tremor, and understands that there is only one focused ultrasound device in the UK and that some patients will have to wait until 2022 for this treatment due to the significant waiting list at St Mary’s Hospital in London.

The text of David's speech reads :

I warmly congratulate Rhoda Grant on securing this evening’s debate and on her informative and well-researched speech, and I welcome Mary Ramsay to the public gallery.

Her bravery throughout her early life circumstances led to her setting up a Scottish support group with the National Tremor Foundation, providing advice, guidance and support to others with her condition.

The purpose and objective of this evening’s debate is to raise awareness of essential tremor and the need for developing treatment options in Scotland.

As the Mayo Clinic makes clear,

“Essential tremor is a ... neurological ... disorder that causes involuntary and rhythmic shaking. It can affect almost any part of your body, but the trembling occurs most often in your hands—especially when you do simple tasks, such as drinking from a glass or tying shoelaces.”

Although it is often confused with Parkinson’s disease, the conditions vary in key ways, such as the timing of the tremors and the associated conditions.

Parkinson’s is also linked with stooped posture, slow movement and shuffling gait.

The parts of the body affected can also differ.

Essential tremor mainly affects the hands, head and voice, while Parkinson’s starts in the hands and can go on to affect the legs, chin and other parts of the body.

Mary Ramsay could be described as a doughty fighter.

Her life has not been easy.

Imagine someone being told as a 20-year-old that they could not have children due to their condition?

Yet she now has three children and 10 grandchildren.

She has been campaigning for disability rights for about 40 years, but despite her long fight she is still frustrated by the gaps in service.

People with essential tremor regularly contact Mary and express their disappointment with available treatments.

For Mary, deep brain stimulation was a godsend, giving her courage to speak out on behalf of others with disabilities, not just tremor.

However, the surgery that Mary underwent is invasive and can have serious side effects, as we have heard from Rhoda Grant.

It is no surprise that many are reluctant to undergo such a daunting procedure.

MRI-guided focused ultrasound surgery is a new treatment that is utilised to alleviate tremor.

The incisionless treatment has the same immediate and long-term effect as invasive deep brain stimulation but, in contrast, it does not require permanent electrical hardware, or revision operations in the future.

As we have heard, however, that alternative procedure is currently available only in London, with long waiting lists.

I compliment the team at Ninewells hospital in Dundee, who have visited the London surgery team at Imperial College Healthcare NHS Trust in order to see the new surgery and the use of the high-intensity ultrasound device.

The London team have expressed support for the introduction of that novel technology to Scotland and have offered to visit the Ninewells team to guide them through the first few procedures.

Mr Selwyn Lucas, a 52-year old painter and decorator from St Austell in Cornwall, was one of the first people to receive the treatment as part of the trial in the UK.

For more than 20 years, he lived with a tremor in his right hand; it had grown progressively worse in the five years before he was treated.

Commenting on the trial he said:

“Since the treatment I have been able to write my own name for the first time in many years and taken my wife out for a lovely meal without fear of embarrassing myself.

"I will also be able to go back to using my right hand which will allow me to take on more painting and decorating jobs.”

As we have heard, £2.3 million is required to bring the new technology to Scotland, of which £1.5 million is to purchase a high-frequency machine for essential tremor treatment,
£500,000 is for a low-frequency machine to treat brain tumours, and £300,000 is for running costs up front.

So far, £400,000 has been raised by a robust fundraising campaign led by the University of Dundee, but the costs would be a crucial investment in Scottish healthcare.

Bringing the treatment to Dundee would be an opportunity for Scottish patients to receive state-of-the-art neurosurgery for some of the commonest types of tremor, including essential tremor, Parkinson’s and multiple sclerosis.

In addition, this is a chance to establish Scotland as one of only a handful of countries in Europe and worldwide that are using that technology for research into treatments for brain drug delivery and brain tumour surgery.

The chairman of the National Tremor Foundation, who himself lives with essential tremor, said :

“in my opinion the costs involved in setting up this equipment would be recouped many, many times over in years to come.
"The opportunity of assistance for people young and old to carry out their studies, work, pursue their ambitions and carry on with their everyday lives as a result of this treatment can only benefit the Scottish economy in the long run.”

I congratulate Rhoda Grant again.

 

I am delighted that Mary Ramsay is here. I thank everyone who has helped to highlight this important issue to the Parliament.

 

The text of the entire debate can be read at :

http://www.parliament.scot/parliamentarybusiness/report.aspx?r=11536&i=104649#ScotParlOR