The NTF would like to take this opportunity to update you on the campaign to ensure MR-Guided Focused Ultrasound (MRgFUS) is available on the NHS for the treatment of essential tremor.

The NTF would like to take this opportunity to update you on the campaign to ensure MR-Guided Focused Ultrasound (MRgFUS) is available on the NHS for the treatment of essential tremor.

As you may well be aware, previously NHS England conducted a public consultation on the proposal which provided an opportunity for people who live with Essential Tremor to share their personal stories and reasons for supporting this new treatment. In total 36 individual responses were received by the NHS as part of the consultation exercise, and we would like to thank all those supporters of the NTF who were among those who made their views knows. A key issue identified during the consultation is that people are clear that any new treatments for Essential Tremor must have equal access, and that patients up and down the country (not just in London) should have the opportunity to benefit.

Following the consultation, in late July the Clinical Priorities Advisory Group met (remotely of course!) to prioritise the new commissioning policies that NHS England would like to introduce, and among these was the policy to make MRgFUS available on the NHS – this is very encouraging.

In advance of this meeting taking place the NTF and Insightec jointly hosted a virtual Parliamentary Roundtable event with MPs and Peers – including our President Lord Fellowes – to discuss the impact of Essential Tremor on people’s lives and the advantages of making MRgFUS available on the NHS. The event was formally hosted by The Rt. Hon. Sir Mike Penning MP, a former Minister for Disabled People.

Geoff Sleight, from Leeds, who has benefited from MRgFUS talked to the Parliamentarians about  “Geoff’s Journey” and why he wants to see the treatment available for more people. Kevin Harfoot, NTF Chairman, also talked about the work of the NTF and how our support groups help people across the country, even more so during Covid19.

Following this meeting 10 MPs and Peers agreed to sign a joint letter to the Chief Executive of the NHS, to express their support for this new treatment. Thank you to all supporters of the NTF who made contact with their local MP to encourage them to attend the virtual roundtable event, and to support the campaign to make MRgFUS available on the NHS.

Following the meeting of CPAG, the next part of the NHS process towards MRgFUS being available on the NHS is for the recommendations of CPAG to be considered by the Specialised Commissioning Oversight Group (SCOG – another acronym!) who will decide which CPAG recommendations the NHS can afford to fund. This meeting is expected later this year and the NTF will keep you updated on developments regarding the commissioning policy for MRgFUS, and how you can continue to support the campaign.  To quote Sir Winston Churchill:  “Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning”…