Ensuring People With Essential Tremor Have More Choice On The NHS
The National Tremor Foundation (NTF) would like to thank all those who responded to NHS England’s consultation on their draft proposal to commission MR-Guided Focused Ultrasound (MRgFUS) for the treatment of Essential Tremor. This consultation provided an opportunity for people who live with Essential Tremor to share their personal stories and reasons for supporting this new treatment. It is vitally important that people living with Essential Tremor have a range of treatment options available, including include MRgFUS, for when pharmacology is ineffective. A key point made by many people was about ensuring that the importance of patient choice is respected.
Overwhelmingly what stood out was the message that Essential Tremor is a life-changing condition. People explained the impact on their quality of life, how going out could become difficult and that a new therapy that could reduce the symptoms of ET would be welcome. We would once again like to thank all those who took the time to share a piece of their lives with NHS England, in the hope of ensuring better patient choice for people with Essential Tremor.
As part of the campaign a number of MPs and Peers also responded to the consultation and submitted a joint letter, and we would like to thank all those people who made contact with their local MP to encourage them to support the campaign. At a time when we are all living with the restrictions and anxiety caused by the lockdown due to the Coronavirus it is encouraging to see so many people still wanting to campaign on the issue.
Following the consultation, NHS England will consider all of the points made by members of the public, MPs, Peers and clinicians, organisations and others, with the aim of making a decision about the next steps following the recommendation of the next ‘Clinical Priorities Advisory Group’ – or CPAG.
The NTF will keep you updated on developments regarding the commissioning policy for MRgFUS, and how you can continue to support the campaign. On Saturday 16th May 2020 at 12.00pm we will be using a ‘Zoom’ call as an opportunity to listen to “Geoff’s Journey”. Geoff will be interviewed during the call and will explain what it was like to be treated with MRgFUS, and the impact it has had on his life. To participate in the call please register.