 The final item of business just members business debate on motion 1050550 in the name of Rhodigrant on campaign for focus ultrasound device and this debate will be concluded without any questions being put. Will those members who wish to speak in the debate please press the request to speak buttons and I call on Rhodigrant to open that debate for around seven minutes please. mae'r prydynustiau Meri Ramsay, ond yn galiad oedd yn gael. Felly, rydyn ni wedi gweld yblodd rhain o'i cyfnodd gwahanol beiriau aion ei gyrraedd. Meri fydd ddim yn ei cyfnodd rhain, a fyddai'r byw peth yn ei gydig froi gynwyllol i gyfnodd. A meddwl yw'r cyflodi ac yn newid cyflodd, mae y cilydd gyntaf ar eu teimlo enw i manny. Fyw fy modd ar ddatblygu adnwn eu cynnwys rydyn nhw, mae'r twf yw'r newid yn eu fathrein. Mary was 48 years old when she received a definitive diagnosis and while the condition is not life threatening, it can have a very detrimental impact. The tremor, depending on its severity, can stop you doing ordinary things and this means that sufferers often retreat into themselves and become depressed. Mary was bullied, physically and verbally abused. She could not do the basic things like thread a needle, drink a full glass of milk, eating with others, became a nightmare so that she retreated into herself. Because of that, she would like to see compulsory disability training in school to build understanding. The scale of the condition is not widely known but it is estimated that around a million people in the UK have the condition. It is difficult to be precise because many people withdraw to themselves away from the public because they find it difficult to deal with the impact and they become isolated as a result. Mary was a pretty strong individual and she kept going. As an adult she found the tremor foundation. Up until that point she felt that she was the only one with the condition and getting in touch with others was fantastic for her. She would not be fobbed off either, she was insistent on seeing a specialist who recommended deep brain stimulation and she went for it, had the surgery to put electrodes in her brain. When you meet Mary today, she is pretty invincible but she says that she was as quiet as a mouse before she had her surgery and now she says that she is the mouse that roared. Not happy just to get that treatment for herself, she has now started to campaign for others. Mary had to go to Newcastle for her treatment and there is only one Scottish DBS centre in Glasgow and it is a long waiting list. That spurred her on to help others with a aim to have treatment, more treatment available in Scotland. There is a new treatment for the tremor which does away with the need for invasive surgery and the aim is to try and make that available in Ninewells and Dundee. That would not help Mary as she has already had electrodes implanted for deep brain stimulation but it would help others to avoid that surgery. It is not just for people with essential tremor that would benefit but people with Parkinson's, MS and other conditions that lead to tremor. The new treatment is magnetic resonance guided focused ultrasound surgery and now there is an acrimonium for that which is MRG, FUS but that is almost as hard to say as the original. The treatment is awaiting nice approval but it is thought that this approval for essential tremor will happen next month. There will be a proviso that patients are followed up in the long term to assess the longevity of the effect of the treatment. It has already been approved in the USA and other parts of Europe for treatment for essential tremor and Parkinson's. 16 patients in the UK have benefited from the treatment which has been successful in reducing their tremor in every single case. Having that available in Scotland would make us leaders in the UK and in the world. There is one other treatment centre in the UK, St Mary's in London, which has a five-year waiting list. Distance and waiting time put treatment out of the reach of Scottish patients. That treatment would be a game changer for those who are currently suffering in silence. It would allow them to live their lives. I also understand that it can be used to improve the quality of life for those with inoperable brain tumours, something that the late Tessa Jowell fought for. It works by targeting the brain areas that produce the tremor with ultrasound waves using MRI. Patients are awake throughout and require no anaesthetic. A small lesion is created by heating up the brain tissue with ultrasound waves and the effect on the patient's tremor is painless and immediate. That is a day-case treatment that requires no hospital stay. It is revolutionary. That treatment is minimally invasive and has the same immediate long-term effects as the invasive alternative deep brain stimulation but without the infection risk and it does not require permanent electrical hardware or revision operations in the future. Currently there are risks with DBS. A 1 in a thousand risk of death, a 1 in a hundred risk of stroke and a 1 in 30 risk of brain hemorrhage. Over 1,200 patients have had the new treatment worldwide without any significant comparable complications to date. The new treatment is also a third of the cost of DBS. There are over 1 million people with essential tremor in Britain and around 250,000 of them are severely disabled by their tremor. Dr Peter Bain, consultant neurologist and a founding trustee at the National Tremor Foundation, coordinates the trial of focused ultrasound surgery and he said that the new technique is the biggest breakthrough in functional neurosurgery in the last 20 years. Nine Wells is ideally placed to take this on. It will be a fundraising appeal in place led by Dundee University. It will then need £2.3 million to purchase the equipment. This equipment would pay for itself by allowing people to lead their lives, get back to work and play an active part of society and also by cutting the cost of the treatment. This is an opportunity for Scottish patients to receive state-of-the-art minimally invasive neurosurgery for some of the commonest causes of tremor. It is also an opportunity to establish Scotland as one of the handful of countries worldwide who are using this technology for research into treatment for a brain drug delivery and also brain tumour surgery. There is currently, as I said, only one treatment centre in the UK, St Mary's in London, with a five-year waiting list. Without our own treatment centre, not only will Scottish patients with tremor have to wait, but there is also a risk that the treatment will eventually only be available to those who can afford to pay for it. Therefore, we need to make sure that this treatment comes to Scotland. I now move to the open debate, and I call Miles Priggs to be followed by David Stewart. Thank you, Deputy Presiding Officer. I would like to start by congratulating Rhoda Grant on securing this evening's debate. I am pleased to be participating in it. Like Rhoda Grant, I welcome the fundraising campaign to raise the money required to purchase a focus ultrasound device for Scotland's NHS, which has the potential to benefit patients across our country. I would like to commend all those involved in the campaign and who have supported it, especially Mary, and I was sad not to be able to meet her this afternoon. Is a real concern to all of us and to so many Scottish patients who could benefit from this, that we are seeing waits of up to five years to access the unit at St Mary's in London, which is the only device that has been said currently in the UK. A device in Scotland would therefore obviously lessen the significant stresses and costs for patients having to travel to London for treatment and the extra pressure that that places on their family members. The focus ultrasound device is a piece of cutting-edge technology that allows doctors to use high-intensity sound waves to destroy tissue causing mistimed electrical signals inside the brain in the thalamus. Treatment is performed in imaging departments rather than operating theatres, and the use of this ultrasound in the brain to treat patients with neurological conditions that lead to tremors means far fewer side effects and risks compared to the traditional treatments of drugs or brain surgery. As Rhoda Grant has already said, the costs of this treatment are also estimated to be a third of the costs of equivalent brain surgery. Professor Gedrotch, consultant radiologist at Imperial College Healthcare NHS Trust, has described the device as a game changer for patients with movement disorders because we can cure them with a treatment that is completely non- evasive and we don't have to give unpleasant drugs. He's one of the many radiologists and neurologists who believe that the device has huge potential and it's hoped that the use will soon be increased across the country to transform the lives of many people with a range of neurological conditions. One of the main challenges for all health services in developed countries is how they access and how we can bring forward quickly an ever-increasing number of new drugs, technologies and devices which patients understandably want to be able to use when resources are finite and there are so many competing demands across our NHS. The device in St Mary's was funded wholly by the Imperial College Healthcare Charity which funds major equipment purchases and is a great example of a charitable foundation making a real difference to patients' lives. I hope that we can see the success of this fundraising campaign to deliver our one for Scotland. To conclude, Deputy Presiding Officer, I once again welcome today's debate and the campaign. I look forward to hearing from the minister how the Scottish Government believes Scotland can secure a focused ultrasound device as this is something that clearly offers so much promise for patients with essential tumor Parkinson's and other life-limiting neurological conditions. David Stewart, to be followed by Edward Mountain. Thank you, Presiding Officer, and I warmly congratulate Rhoda Grant for securing this evening's debate and for her informative and well-researched speech. I also welcome Mary Ramsey to the gallery whose bravery throughout her early life circumstance led to her setting up the Scottish support group for the National Trimmer Foundation providing advice, guidance and support to others with her condition. The purpose and objective of this evening's debate is to raise awareness of essential tremor and the need for developing treatment options in Scotland. As the Mayo Clinic makes clear, essential tremor is a neurological disorder that causes involuntary and rhythmic shaking. It can also affect any part of the body but the tremor occurs most often in your hands, especially when you do simple tasks such as drinking from a glass or tying shoelaces. Although presiding offer is often confused with Parkinson's disease, the conditions vary in a number of key ways, such as the timing of the tremors and the associated conditions. Parkinson's is also linked with stoop posture, slow movement and shuffling gait, but the parts of the body effect it can differ. Essential tremor mainly affects the hands, the head and the voice, while Parkinson's starts in the hands and goes to affect legs, chin and other parts of the body. Mary Ramsey is what is described as a doubty fighter. Her life has not been easy. Imagine a 20-year-old being told that you could not have children due to your condition. Yet now she has three children and ten grandchildren. She has been campaigning for disability rights for about 40 years. However, despite her long fight, she is still frustrated about gaps in service. People with essential tremor regularly contact Mary and express their disappointment with available treatments. For Mary, deep brain stimulation was a godsend, giving her the courage to speak out on behalf of others with disabilities and not just tremor. However, the surgery that Mary underwent is invasive and can have, as we have heard from Rhoda Grant, serious side effects. It is not a surprise that many are reluctant to undergo such a daunting procedure. MR-guided focused ultrasound surgery is a new treatment that is utilised to alleviate tremor. The insistence in this treatment is the same immediate and long-term effect as invasive deep brain stimulation. However, in contrast, it does not require permanent electrical hardware or revision operations in the future. As we have heard, the turn-up procedure is currently only available in London with long waiting lists. I would like to complement the team at Ninewell's Hospital Dundee who have visited the London surgery team at Imperial Healthcare NHS Trust in order to see the new surgery and the use of the high-intensity ultrasound device. The London team have expressed support for the introduction of this novel technology to Scotland and have offered to visit the Ninewell's team in order to guide them through the first FU procedures. Let me give you an example, Mr Sue and Lucas, who is a 52-year-old painter and decorator from St. Austel and Cormill. He was one of the first people to receive the treatment as part of a trial in the UK. He has lived with a tremor in his right hand for more than 20 years, which has grown progressively worse over the last five years. Commenting on the trial, he said, and I quote, As the treatment, I have been able to write my own name for the first time in many years and I have taken my wife out for a lovely meal without feeling the bars of myself. I will also be able to go back to use my right hand, which allows me to take more painting and decorating jobs. As we have heard, 2.3 million are required to bring the new technology to Scotland, 1.5 of which will be to purchase a high-increase machine for essential tremor, half a million for the low-frequency machine to treat brain tumours and 300,000 for running costs up front. 400,000 has been raised by a robust fundraising campaign led by the University of Dundee, but the cost will be of a crucial investment in Scottish healthcare. Bringing the treatment into Dundee would be an opportunity for Scottish patients to receive state-of-the-art neurosurgery for some of the commonest types of tremor, including essential tremor, Parkinson's and multiple sclerosis. In addition, this is the chance to establish Scotland as only a handful of European and countries worldwide that are using this technology for researching treatments for brain drug delivery and brain tumour surgery. As the chairman of the National Tremor Foundation who himself lives with this said, in my opinion, the cost involved in setting this up equipment would be recouped many, many times over in years to come. The opportunity for assistance for people young and old to carry out their studies, work, pursue their ambitions and carry on with their everyday lives as a result of the treatment that benefit the Scottish economy in the long run. In conclusion, Presiding Officer, congratulations again to Rhoda Grant and I'm delighted that Mary Ramsey is here. I thank them all for highlighting this important issue to Parliament today. Colledron Mountain, to be followed by Fulton Greger. Thank you, Presiding Officer. First of all, I'm delighted to have the opportunity to take part in this debate this evening. I'd like to thank Rhoda Grant for securing this debate. Rhoda Grant and Mary Briggs for telling me a lot more about this problem than I knew about before and the fact that I've had the opportunity to research it before this evening is one of the benefits of having these debates. Thank you for your contribution and for allowing me to learn more. I'd also like to take this opportunity to voice my support for the campaign to install a focused ultrasound device in Dundee. Mary Ramsey, who I met this afternoon for her tireless campaigning on this issue. Mary, as I found out this afternoon is an eloquent and persuasive ambassador. Sorry, I knew I'd get that wrong. I'm nervous with you standing behind me, Presiding Officer. I hope you don't mind me making that comment. I'm just wondering if Mary could teach me some of how to make you all nervous. Now, as we've heard, half a million pounds has already been raised by the public to secure a focused ultrasound device. I welcome that and believe that the Scottish Government really should be stepping up to fund the additional balance. The case for purchasing a focused ultrasound device to me appears to be a simple one. Waiting list could well be shortened, patient load will be lightened and if the Scottish Government commits to purchasing the device and putting it in Dundee, these could well be realised. Speaking with Mary this afternoon, I learnt how Highlanders who have essential tremors have to travel to Newcastle for treatment because there is a four-year waiting list in Glasgow for the deep brain stimulation. Now, according to the National Tremor Foundation, focused ultrasound treatment is a lifeline for patients with a recent study showing that hand tremors improved by 75% and the quality of life improved by 65%. That is a huge step forward. Before today's debate I had read many patient stories and there are remarkable recoveries that have been brought about by this treatment. One patient, as we heard similar to the one that David Stewart mentioned described how their tremors in their right arms had completely disappeared after the procedure and stated how treatment and I quite had quite frankly given them back their life. My only regret they said was they didn't have the treatment sooner. That statement should be enough to make a case and the reason why this treatment should be available in Scotland. Therefore, I think that considering also that it may have an effect on the ability to treat Parkinson's disease, epilepsy and well as the early stages of prostate cancer and possibly breast cancer makes the case more compelling. Presiding Officer, as you know politicians can talk and talk and talk. Let's try and avoid that. We could, by the Government deliver a focussed ultrasound device in Dundee. The question for them at this stage is to delay or deliver to chat or to act. I say let's act. Thank you Presiding Officer. I call Thulton MacGregor. Thank you Presiding Officer and I just want to take the opportunity to rewind the chamber and the parliamentary ladies and officer to the health secretary. I wasn't intending to speak. Presiding Officer, as you know I pressed my buttons during the debate. I wanted to take the opportunity from the SNP back branches to thank Rhoda Grant for bringing the issue to the chamber and of course to Mary Ramsey as others have said for what sounds like an absolute tireless campaign on this issue. I suppose a bit like what Edward Mountain had said sitting listening to the debate I've been educated and I suppose that's the point of campaigns is to find out a wee bit about what's going on in different areas. There can be no doubt that the more minimally invasive treatment is where appropriate that's obviously a good thing and I believe that that's in line with Scottish Government policy and I know that the health secretary's been in the chamber many times before talking about these things and I also like the idea as others have said about the idea of Scotland being a leader in this area. If the current treatment centre is readily available then that is also a good thing but I think that it can link wider challenges in the health services we move on and I think that the ageing population and the different types of treatment that people are looking for but I do also caution that by saying that I am just learning about it today during this debate and as I said that's the purpose of campaigns and I know that all of these things the evidence that's available and I look forward to hearing the cabinet secretary's response to what she said but I suppose I wouldn't need to take up the whole time you'll be glad to hear, Presiding Officer the purpose of me standing up to the chamber today was to put on record my thanks to the campaign in getting this to the chamber making it an issue and getting it out there and hearing about another treatment so thanks for that Colin Shonarobson to respond to the debate Cabinet Secretary Thank you, Deputy Presiding Officer I'm very grateful to Rhoda Grant for bringing this motion to the Parliament today and I want to join with others in welcoming Mary Ramsey to the gallery in paying particular tribute to the work that she has undertaken in raising awareness of essential tremor and the debilitating impact of this condition for highlighting and raising interest in a new type of experimental treatment for those living with essential tremor As the members involved in the debate will know the adoption of innovative medical technologies into the NHS has the potential to offer new ways to treat conditions some of those have the potential to provide transformative improvements in the health and quality of life of patients However, as I'm sure members will agree, it's imperative that any new procedure is adopted into the NHS It's first subject to rigorous clinical assessment to establish patient safety and efficacy This is vitally important for both clinicians and patients in their care It supports informed conversations between clinicians and their patients about the range of treatment options that may be available to them and the likely risks and benefits With this knowledge clinicians can offer the best information about the different treatment options supporting shared decision-making between clinicians and patients about their care In the case of the new technology and procedure which is the subject of this motion Magnetic Resonance Imaging guided ultrasound for the treatment of essential tremor current expert opinion albeit in draft form has very recently been issued by the national institute for health and care excellence or NICE This guidance follows an assessment of the available clinical research evidence The final guidance will be published in June but the draft one is already available NICE has concluded that the available evidence suggests that this procedure does not give rise to major safety concerns However, NICE has also concluded that the evidence of its clinical efficacy is presently too limited to recommend that it be used in practice in the NHS unless there are special arrangements in place or it's to be used for the purposes of research As members may be aware NICE assesses the safety and efficacy of interventional procedures including the one at issue here on behalf of the NHS in Scotland England and Wales It provides advice on the suitability of the adoption of new procedures into the NHS based on its assessment of the evidence The processes and methods used by NICE are designed to ensure that its guidance is expert robust and is developed and transparent and timely Consequently NICE guidance is authoritative protecting the safety of patients and supporting clinicians and the NHS as a whole in managing clinical innovation appropriately Given the latest opinion from NICE that the evidence of efficacy is too limited adoption as a commissioned national service for the treatment of essential tremor or the other conditions mentioned in the motion could not be considered at the current time Better evidence that demonstrates efficacy will be needed by all of the nations across the UK Where NICE has outlined special conditions for the use of a procedure these must be followed In this case the draft guidance mandates that clinicians must inform patients that there are special conditions attached to the use of this procedure It's use in research trials not routine clinical use but evidence of efficacy is limited I appreciate that situation may be disappointing However, I'm aware that there are a number of clinical research studies in other countries under way on the use of MRI guided ultrasound for essential tremor Rhoda Grant Just on that point and obviously this is a new treatment and research needs to be carried out the research that has been carried out so far shows that the treatment could be a game changer Would it not be good that Scotland leads the way in this research because obviously Dundee University is also involved in this alongside nine wells and use it as a research procedure but also lead the way to allow that treatment to be available to people in Scotland where no other treatment is possible I'm just about to come on to that research is in progress internationally that I think the range of evidence on the safety and efficacy of this technology which of course NICE will pay attention to that research and of course the Scottish Government will also keep the situation under close review Should new clinical evidence be generated from anywhere that demonstrates effectiveness which materially changes the clinical assessment by NICE then our position would of course be re-evaliated and that evidence would be expected to include a review of the clinical effectiveness of the device as well as its position in the current established treatment pathways now with that in mind as Rhoda Grant has just mentioned members will be aware as noted in the motion and many others have mentioned that the University of Dundee together with NHS Tayside are exploring the possibility of purchasing MRI guided ultrasound technology this is in order that they might join and add to that international research effort to evaluate the use of this technology for the treatment of movement disorders and I'm encouraged by the University of Dundee's plans to explore the possibilities of undertaking such research work since this could provide opportunities for patients in Scotland to participate in clinical trials of this technology hence meeting the requirements of the NICE guidance in draft form will be at the moment Given the clinical efficacy of this technology is still unproven it is for the University of Dundee to assess and decide whether or not to invest in this technology for research however should this facility be established in Dundee the Scottish Government through the chief scientist office would welcome a high quality application to its competitive grant funding scheme for clinical research projects that aim to evaluate this technology further as usual applications would be independently and rigorously assessed using the CSO's established processes and that's important because that would also come with very robust evaluation so it wouldn't just be the appropriateness of that funding scheme to apply for but because it comes with recognised evaluation processes that are important in establishing the evidence in addition the CSO's financial contribution to the national institute of health research NIHR also opens up opportunities for larger scale funding from the NIHR's schemes for clinical research furthermore, like all research active health boards, NHS Tayside has some discretion about the clinical research activities it supports using the research support funding provided by the Scottish Government through NHS Research Scotland it can therefore utilise some of this infrastructure funding to support trials of this technology if it chooses to do so NHS Research Scotland's support is also available to facilitate the sighting of both commercial and non-commercial trials and the recruitment of patients to them should the university have done to be successful in purchasing this technology, therefore there is a range of opportunities and support through the CSO and NHS Research Scotland to facilitate clinical research on this technology and procedure so I think bringing all that together there is an opportunity for Scotland here but it has to be done through the proper processes so that the evidence and evaluation of it is robust and recognised internationally and I would certainly encourage those partners to come forward through those routes I'd like to finish by reiterating that the Scottish Government is committed to safe and effective care and treatment which obviously puts the patient at the centre of that in order to do this we must ensure that decisions about the adoption of new technologies interventional procedures or services into the NHS are based on the best available evidence with respect to MRI guided ultrasound for movement disorders whilst clinical efficacy has not been demonstrated as yet I would certainly hope that the clinical trials evidence is being accrued internationally and hopefully in Scotland in due course might enable a wider range of options with established safety and efficacy to be offered to patients who are in the situation that Mrs Ramsey used to be and I would aspire to that for Scotland so I'd like to thank members for their contributions to this debate I hope you found what I've had to say useful some work to be done by partners in taking this forward but again thanks to Rhoda Grant for raising this important issue through the motion that concludes the debate and the meeting is closed