An Inverness woman has gained the support from MSP Rhoda Grant with continued backing of a petition in aid of essential tremor treatment
Register for free to read more of the latest local news. It's easy and will only take a moment.
Mary Ramsay, from Dalneigh, is the chairwoman of the Scottish Tremor Society and is asking the Scottish Government to back the provision of magnetic resonance-guides focused ultrasound (MRgFUS) technology.
Ms Grant has been backing the long-standing petition and spoke in its support at the citizen participation and petitions committee.
The committee has decided to continue to keep pressure on the government to use the treatment as ‘standard care’ under the NHS.
The treatment is currently available for free under the NHS in England, but in Scotland it is deemed ‘experimental’.
The deep brain ultrasound treatment has the ability to improve the quality of life for people with uncontrollable tremors.
It became available in Scotland due to a University of Dundee fundraising campaign, but the number of patients is limited – out of 80 patients referred last year, only 25 per cent were considered appropriate.
The treatment needs to be evaluated by health bodies such as the National Special Services Committee (NSSC) to meet the goal of Mrs Ramsay making it an NHS service.
Mrs Grant told the petitions committee that since the last petitions committee she had had several meetings with Mrs Ramsay and other stakeholders and had written to Ralph Roberts the chairman of the NSSC.
The regional Labour politician said: “There is no guarantee that they will reach a conclusion at that time. So, it feels to me that there is still no real recognition of the issues that people with essential tremor face having to travel to London for assessment and back there if they are assessed as being suitable for procedure, and also no acknowledgement of the waiting times people face and the impact on their lives.
“There are real fears that the decision will be further delayed beyond spring or summer and I think this committee know how long this has been before this committee and the previous committee.
“I share Mary Ramsay’s frustration that we appear to be moving at a snail’s pace to bring this much-needed treatment to patients in Scotland. Patients are having to consider joining a waiting list in London when the treatment is available here.
“Indeed, NHS England is looking to create another centre to deal with demand.
“It makes no sense that we have the equipment and knowledge here in Scotland, but we are not using it and patients are forced to travel far from home to access it. It is not good for them and not good for the public purse.”
Mrs Grant said that both Mrs Ramsay and the first patient to get the Dundee treatment, Ian Sharp, were happy to give evidence to the committee on their own experiences and show first-hand the difference the treatment can make.
SNP MSP and deputy convener David Torrance also supported the petition and asked the committee to write to the Scottish Government highlighting the success of the treatment, asking if funding could be made available for more patients and how the government will raise awareness among health professionals for the treatment.
After the meeting, Mrs Ramsay said: “It is frustrating all this to-ing and fro-ing. I wish these specialist health groups could put themselves in the position of a person with essential tremor.
“It is the distance and expense of going to London, then initial assessment which is a wait of two to three years, and then further wait for actual treatment. Can they honestly say they are quite happy to put up with that? I don’t think so.”
