#ActionOnET

#ActionOnET is the leading UK campaign aimed at raising awareness and patient accessibility of Magnetic Resonance Guided Focused Ultrasound on the NHS for the treatment of Essential Tremor. 

Essential tremor, which impacts over 1 million UK residents, can have a severe impact on quality of life, and patients often feel isolated as they are unable to do simple things like eat and drink in public.

However, Focused Ultrasound can be a life-changing treatment which NICE has ruled as being safe and effective. Making a significant improvement on people's lives.

The campaign aims to share the latest updates on MRgFUS with patients, the medical community, and policy makers, to transform lives of those living with the condition in the UK.

Magnetic Resonance Guided Focused Ultrasound (MRgFUS) is a safe, incisionless procedure for the treatment of essential tremor. 

Using high-intensity sound waves, guided by magnetic resonance imaging, the transformational treatment targets and treats the area of the brain responsible for the tremor, with instantaneous results. The incisionless treatment option is often performed in an outpatient setting, with many patients showing immediate tremor relief with minimal complications.

Suitable for patients with medical-refractory to wider Essential Tremor pharmalogical treatment, 

Key benefits of MRgFUS include:

• Fast and incisionless non-invasive treatment 
• Same day procedure
• Tremor reduction: 73% postural tremor reduction in patients remained for up to 5 years
• Reduced need for wider pharmalogical treatment 
• Improved quality of life 

But don’t just take it from us, watch and listen to Mary’s story about her experience of MRgFUS treatment after living with the condition for over 50 years.

MRgFUS can cause slurred speech, an unsteady gait (that could increase the risk of falls or necessitate using a walking aid), weakness, numbness or tingling in the treated side of the body. It can also occasionally induce an involuntary writhing movement (chorea) on the treated side of the body. Typically, should any of these adverse effects occur, they resolve over a period of three to six months but occasionally one or more adverse effect may remain permanently.

MRgFUS treatment is currently available in 53 treatment centers across the globe, with over 10,000 patients living with Essential Tremor treated worldwide.  

In June 2018, the treatment received positive guidance from the National Institute for Health and Care Excellence (NICE). This was an evidence-based recommendation which sets out the care and services suitable for people with a specific condition.

The National Health Service (NHS) England approved funding for the treatment of medication-refractory Essential Tremor patients from April 2021, with three treatment centers currently offering the procedure, including The Walton Centre in Liverpool, St Marys hospital, London. It is also offered privately at Queen Square Imaging Centre, London and Ninewells Hospital, Scotland. 

Our website contains general medical information only about MRgFUS, but If you would like to find out more about how MRgFUS might be appropriate for you and how you can gain access to the treatment, you should seek medical advice from your GP.

Improving treatment accessibility - While currently available under the NHS, treatment demand is high, and as part of the #ActionOnET campaign we are lobbying for implementation of further treatment sites by the NHS, which will ensure patients have access to innovative, life-changing treatment.

NTF supporters are playing a key role in making contact with their local MPs to make them aware of the impact of living with ET and the importance of MRgFUS being available to NHS patients. 

Progress is being made in the NHS with the development of a commissioning policy for Focused Ultrasound.  The policy, once implemented, will mean innovative, evidence-based technology being taken up by the NHS to ensure patients have access to effective, life-changing treatment.

It is our aim to make Focused Ultrasound treatment reasonably accessible across the whole of the UK for people with essential tremor, but in order to do this we need to urge the NHS to consider providing the technology at centres across the UK.

We need your support in driving this message forward!