Rhoda's member's debate in the Scottish Parliament
16 May 2018
The text of Rhoda's motion 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 Rhoda's speech :
I have brought this motion to the chamber because of my constituent Mary Ramsay, who is in the public gallery tonight.
Before I met her, I knew nothing about essential tremor, the condition that she was born with, which is basically a syndrome that causes uncontrollable shaking.
As a child, she was referred to numerous specialists and was given, she says, “every tablet known to man”.
Due to the lack of understanding of her condition, she was then told that it was all in her mind.
Mary was 48 years old when she received a definitive diagnosis.
Although the condition is not life threatening, it can have a detrimental impact on someone’s life.
Depending on its severity, the condition can stop someone doing ordinary things, which means that sufferers often retreat into themselves and become depressed.
Mary was bullied—she was physically and verbally abused.
She could not do basic things such as thread a needle or drink a full glass of milk.
Eating with others became a nightmare, so she retreated into herself.
As a result of her experience, she would like compulsory disability training to take place in schools in order to build understanding.
The scale of the condition is not widely known, but it is estimated that approximately 1 million people in the United Kingdom have it.
It is difficult to be precise, because many people withdraw into themselves and away from the public as they find it difficult to deal with the impact, and they become isolated as a result.
Mary is a pretty strong individual, and she kept going.
As an adult, she found the National Tremor Foundation. Until that point, she had felt that she was the only one with the condition, so it was fantastic for her to get in touch with others.
Mary would not be fobbed off and she insisted on seeing a specialist, who recommended deep brain stimulation.
She went for it and had surgery to put electrodes in her brain.
When you meet Mary today, she is pretty invincible.
She says that she was as quiet as a mouse before she had her surgery, and now she is the mouse that roared.
She was not happy to get the treatment only for herself, and she has now started to campaign for others.
She had to go to Newcastle for her treatment.
There is only one Scottish DBS centre in Glasgow, and it has a long waiting list.
That spurred her on to help others, with her aim being to have more treatment available in Scotland.
There is a new treatment for the tremor that does away with the need for invasive surgery, and the aim is to make it available in Ninewells in Dundee.
That would not help Mary, as she has already had the electrodes implanted for deep brain stimulation, but it would help others avoid surgery.
The treatment could benefit not only people who have essential tremor but people with Parkinson’s, multiple sclerosis and other conditions that lead to tremor.
The new treatment is magnetic resonance-guided focused ultrasound surgery—there is an acronym, for that, which is MRgFUS, but it is almost as hard to say as the name itself.
The treatment is awaiting approval from the National Institute for Health and Care Excellence, but it is thought that approval for essential tremor will be given next month.
There will be a proviso, which is that patients should be followed up in the long term to assess the longevity of the treatment’s effect.
It has already been approved in the USA and in other parts of Europe for treatment of essential tremor and Parkinson’s.
In addition, 16 patients in the UK have benefited from the treatment, which has been successful in reducing tremor in every single one of those cases.
Having the treatment available in Scotland would make us leaders in the UK and in the world.
There is one other treatment centre in the UK, at St Mary’s in London, which has a five-year waiting list.
Distance and waiting time therefore puts treatment out of reach for Scottish patients.
The treatment would be a game changer for those who are currently suffering in silence, and it would allow them to live their lives.
I also understand that it can be used to improve the quality of life for those with inoperable brain tumours—something that the late Tessa Jowell fought for.
The treatment works by targeting the brain areas that produce the tremor with sound waves—ultrasound—using magnetic resonance imaging.
Patients are awake throughout and require no anaesthetic.
A small lesion is created by heating up the brain tissue with ultrasound waves, and the effect on the patient’s tremor is both painless and immediate.
It is a day-case treatment that requires no hospital stay—-it is revolutionary.
The treatment is minimally invasive.
It has the same immediate and long-term effects as invasive alternatives such as deep brain stimulation but without the infection risk, and it does not require permanent electrical hardware or revision operations in the future.
Currently, there are risks with DBS: a one in 1,000 risk of death, a one in 100 risk of stroke and a one in 30 risk of brain haemorrhage.
More than 1,200 patients worldwide have had the new treatment without experiencing any significant comparable complications to date.
The new treatment is also a third of the cost of DBS.
There are more than 1 million people with essential tremor in Britain, around 250,000 of whom are severely disabled by their tremor.
Dr Peter Bain, who is a consultant neurologist and a founding trustee at the National Tremor Foundation, co-ordinates the trial of focused ultrasound surgery.
He says that the new technique is the biggest breakthrough in functional neurosurgery in the past 20 years.
Ninewells is ideally placed to take this on.
There is already a fundraising appeal in place, led by the University of Dundee, which needs £2.3 million to purchase the equipment.
The equipment would pay for itself by allowing people to lead their lives, get back to work and play an active part in society and by cutting the cost of the treatment.
It is an opportunity for Scottish patients to receive state-of-the-art, minimally invasive neurosurgery for some of the commonest causes of tremor and to establish Scotland as one of a handful of countries worldwide that are using the technology for research into treatments for brain drug delivery and brain tumour surgery.
As I said, the only treatment centre in the UK is at St Mary's in London, which has a waiting list of five years.
Without our own treatment centre, not only will Scottish patients with tremor have to wait, there is a significant risk that the treatment will eventually be available only to those who can afford to pay for it.
Therefore, we need to make sure that the treatment comes to Scotland.
The text of the entire debate can be read at :