Chamber and committees

Petitioner submission of 17 December 2021

PE1723/Q - Essential tremor treatment in Scotland

I have suffered from a tremor all of my life. I was eventually diagnosed with Essential Tremor when I was 48 in 2004. I received a DBS implant in 2004. A DBS implant involves placing electrodes into the brain with a control unit in the chest cavity. The operation I had involved being under anaesthetic, for drilling of the skull, being woken up for placement of the electrodes and finally knocked out again for placement and connection of the control box, a total of 12 hours in the operating theatre area. It was this experience that spurred me on to look for alternatives to DBS for other sufferers. I found out through the NTF (the National Tremor Foundation) that a new treatment was being offered at a London hospital. I thought that this should also be available to fellow Scottish sufferers. After trying through health sources I asked my MSP, Rhoda Grant, for help.

The 1st formal event in Scottish Parliament was a Members debate. The replies from the then Health Secretary, Shona Robison, indicated that NICE were not going to approve this treatment. This was a surprise to me, as my contacts in London were confident that approval would be given. Indeed about 10 days later NICE gave approval. It was suggested that Ninewells pursue a scientific research approach rather than treatment. Together with Ninewells Hospital, University of Dundee NTF and others we set about raising money for the equipment. This we did, with the excess being used for approximately 12 treatments.

In order to try to further this treatment I asked the previous Petitions Committee to look at this. The reply the committee received from the then Health Secretary (now Jeanne Freeman) was a rehash of the information given at the Members debate. I had to correct the papers re NICE before the committee. The committee continued the petition. A 2nd hearing took place where the committee was informed of the state of fundraising and the expected delivery of equipment. Yet again the Health Secretary did not seem to be aware of updates, and reiterated by letter the wrong information given at the last committee. Indeed this was more or less the information reiterated to the current committee at its 1st meeting when it was decided to continue the petition – that this treatment is not approved by NICE, this treatment is not available in England under NHS funding - this is wrong. The National committee has approved this treatment, it is subjected to regional authority approval.

The reply to Jeremy Balfour again suggests applying for research funding this has been done and approved and is currently providing approx 1 treatment per month at Ninewells, from non-NHS funding. It is hoped that research can continue and be moved forward at University of Dundee / Ninewells in the coming year. the possibility of Focus Ultrasound being used as a treatment for some Motor Movements of Parkinson's disease. Research in the USA and Switzerland are at an early stage, but showing positive results in treatment for brain tumours.

The reply also suggests treatment at a London Hospital. I am at a loss to understand why! The skills are available in Dundee, the equipment is available in Dundee, the cash for the treatment is available in Scotland. The Health Secretary has, by their actions, accepted all criteria for treatment in Dundee, yet for no publicly available reason has decided to send patients to London. this will restrict wither patients can afford to travel. i am not aware if there is a Scottish scheme for travel. The Highlands & Islands scheme pays £0.14 per mile or 2nd rail fare. accommodation, last time i used it was £35.00 per person B&B in Newcastle (London will be more expensive), a second person only if necessary, no payments are made for meals. If you live in the central belt it may not be as expensive as if you live anywhere else in Scotland. The treatment is a whole day. I challenge anyone north of the M8 to travel to London and return in one day and have hospital treatment. The treatment being done outside Scotland also means SNHS money leaving Scotland. 

I am at a failure to understand why the Scottish Government, the Scottish Health Secretary refuse to treat patients in Scotland suffering from Essential Tremor with this innovative, proven treatment in Scotland.