Contents
- Attendance
- Interests
- Deputy Convener
- New Petitions
- Continued Petitions
New Petitions
Essential Tremor (Treatment) (PE1723)
Agenda item 3 is consideration of new petitions. The first petition for consideration today is PE1723, on essential tremor treatment in Scotland, which was lodged by Mary Ramsay. The petition calls for the Scottish Parliament to urge the Scottish Government to raise awareness of essential tremor and to support the introduction and use of a focused ultrasound scanner for treating people in Scotland who have this condition.
According to the National Institute for Health and Care Excellence,
“Essential tremor is the most common cause of disabling tremor and is distinct from Parkinson’s disease.”
The cause of the tremor is not known but it
“typically affects the arms and hands, although it may also involve the head, jaw, tongue and legs.”
NICE also confirms that the first line of treatment includes medications such as beta blockers, anti-epileptics or sedatives; the second line of treatment includes different forms of brain surgery.
The petition advocates the use of a non-invasive procedure known as focused ultrasound. This procedure has been the subject of a trial at the Imperial College Healthcare NHS Trust since 2016, with the full results expected to be published later this year. NICE has approved the use of this procedure on one side of the brain since 2018.
I welcome to the meeting Rhoda Grant MSP, who I know has been involved with the petition, and invite her to make a contribution.
Thank you, convener. Mary Ramsay is a constituent of mine and has been fighting really hard to raise funds for a focused ultrasound scanner in Scotland. Mary Ramsay suffers from essential tremor and although she has suffered from it all her life, it was only quite recently that she was diagnosed. I think that she was in her 40s before she was diagnosed. She has been treated with deep brain stimulation, which involves invasive surgery where electrodes are placed in the brain. They only last for so long, so you need repeat operations. Because of that surgery, Mary would not be eligible for treatment using the focused ultrasound scanner, so she would not benefit from it. However, having had one type of treatment and knowing that a different, non-invasive treatment is available, she is keen that other people should benefit from that different treatment.
Mary Ramsay contacted me and put me in touch with Dr Tom Gilbertson from Ninewells hospital, who also lectures at the University of Dundee. They have been doing a lot of fundraising to get a scanner in Scotland. There is only one in the United Kingdom and it is in London; there is a long waiting list for treatment there. I had a members’ business debate on Ninewells hospital’s fundraising campaign and asked the Scottish Government if it would look at providing some funding towards the scanner. The funding available from the Scottish Government would be for after the scanner is in place. It would fund some of the research that could be done with the scanner, because as well as being used to treat essential tremor, it has the potential to be used for a lot of treatments; that potential is still being developed.
Mary Ramsay is keen that funding be found. Some funding is already in place through fundraising, but the sooner the money is available to get the scanner, the sooner the scanner will be in place and the sooner it will be available for people in Scotland to get treatment. Mary has to go to Newcastle for her treatment and that is tough. Her husband has to go down with her and they need to find accommodation in Newcastle. She is having brain surgery a long way from home and that can be really difficult. Mary is keen that others with the same condition get better treatment closer to home.
Am I right in saying that the petition information gives the cost of a focused ultrasound scanner as £10,000?
I do not have the exact figure in front of me, but I do not think that that is right.
The motion for Rhoda Grant’s members’ business debate spoke about the purchase of a £1.5 million focused ultrasound device, so it looks as though the cost would be £1.5 million.
Thank you for reminding me. I know that the cost is into the millions.
It is very expensive, but is it regarded as being more cost effective and a better treatment for the patient in the longer term?
It is a better treatment for the patient because deep brain stimulation means that you have to have invasive surgery to put electrodes in your brain to stop the tremor. When that is first done, it is very effective. However, over time, the electrodes move, so then you have to go back and have more surgery. With any invasive surgery, there is a risk of infection, apart from it being quite frightening to have such surgery. It would be better to have a treatment that was not so invasive and which was permanent, so that people could be treated and then be fine.
Are there any comments or suggestions for action?
It is quite poignant that the Imperial College Healthcare NHS Trust is looking to work with NHS England to make that treatment available following the results of the study. It would be interesting to find out whether the Scottish Government feels that it is a monetary issue or whether it is about a commitment to making this treatment available through all national health service boards in Scotland as well.
A more general point strikes me. This is another neurological condition that has been raised. Multiple sclerosis and motor neurone disease have also been raised in petitions. I wonder whether we need to look more generally at how we approach neurological conditions. It seems to me that we are coming up a bit short in relation to those particular conditions. I do not know whether there is a more general point to be made here.
We might want to reflect on whether that more general point is something that the committee could address or whether it can be flagged up elsewhere.
We should write to the Scottish Government and ask for its views on what the petitioner has called for to find out exactly where we stand.
We need to write to the Scottish Government. There is an interesting issue here and we want to hear from the Scottish Government what its view is. Should we be contacting anyone else?
Rachael Hamilton’s point is a good one. The petition briefing says that the Imperial College Healthcare NHS trust had a £1 million grant to purchase the equipment for the trial, but Rhoda Grant’s motion says that the device will cost £1.5 million to purchase. Are they different devices? There seems to be a discrepancy in the cost.
Ninewells hospital is fundraising; it has had some funding already—not from the Government but from other sources. Mary Ramsay is fundraising locally and people who will benefit from this treatment are fundraising. There is a funding gap; I am not quite sure of the size of the gap at the minute because people are fundraising all the time. The scanner cannot be purchased until that gap is closed.
It might be worth the committee contacting Dr Tom Gilbertson at NHS Tayside, who is at the forefront of this, to find out what the current funding gap is and to get more information about the other treatment benefits if the scanner was bought. It is not just essential tremor that it could be used for. To have something that groundbreaking at Ninewells hospital would be prestigious for the whole of Scotland and would prevent patients from having to travel south to get the treatment.
I suggest that we write to the Scottish Government, that we take up Rhoda Grant’s suggestion, and that perhaps the clerks can look at which relevant stakeholder groups might be able to assist. Do members agree?
Members indicated agreement.
I thank the petitioner for bringing the matter to our attention.
Commercial Attorneys and Party Litigants (Equal Rights in the Legal System) (PE1724)
The next petition for consideration is PE1724, on equal rights for commercial attorneys and party litigants in the legal system, by Bill Alexander. The petitioner argues that commercial attorneys are not given rights that are equivalent to those of solicitors or advocates in the Scottish legal system.
In advance of the consideration of this petition, the Lord President provided a written submission in response to the issues raised by the petitioner. In the submission, the Lord President confirms:
“there is no bias or prejudice against the Association of Commercial Attorneys, or any of its members, on the part of any judicial office holder. Any demonstration of bias or prejudice would constitute grounds for a complaint. There are complaints procedures available under the Complaints about the Judiciary (Scotland) Rules 2017”.
In response to the Lord President’s submission, the petitioner highlights the challenges of making a complaint about the Lord President and sheriffs principal, particularly around the same time as the revised scheme for commercial attorneys was being considered.
Both written submissions are included in our meeting papers. Do members have any comments or suggestions for action?
It is a very interesting petition. In the first instance, we need to write to the key stakeholders—certainly the Law Society, and perhaps the Faculty of Advocates.
It is a strange one, because the Lord President’s submission sets out that the petitioner has the opportunity to make complaints through the complaints process. There is a bit of a stalemate here. We need to probe this a little bit more with the Scottish Government to find out its views rather than make a judgment that is based only on the Lord President’s views.
This may be about something inside the system, to do with whether people are equally valued and so on. We may want to reflect on whether it is possible for us to either make a judgment or change perceptions. It would be useful to gather a bit of evidence in order to do that.
Do members agree to write to the Scottish Government and identify key stakeholders to contact to get a response to what the Lord President said and the further submission by the petitioner?
Members indicated agreement.
Suicide Awareness (Support for Young People) (PE1725)
The final new petition for consideration today is PE1725 on suicide awareness and support for young people, by Ann Marie Cocozza, on behalf of Families and Friends Affected by Murder & Suicide. The petition calls for the Scottish Government to make suicide awareness education, information and training mandatory for all high school pupils, teachers, carers and parents and to provide specific ring-fenced funding for that training. A Scottish Parliament information centre briefing has been prepared in connection with the petition and is included in our papers.
First, I thank the petitioner. The petition obviously comes from a direct and very difficult experience, but it frames positive suggestions and solutions in a helpful way. The committee is inquiring into mental health support for young people and we might want to test some of the petition’s suggestions during the inquiry.
09:30It is important that there should be practical outcomes from this tragedy. I think that we all wonder whether, if we were in those circumstances, we would know what to say. Reflecting on when I was still teaching, I can certainly see that having a bit of confidence to know what would be the right things to say and to be able to feel that you could help in some way, is really important. Do members have suggestions, other than what I have just said, about what we could do?
As you say, the subject is hugely emotive, but it has been exercising the Parliament for a little while and continues to gather information and momentum. It feels like we are going somewhere, especially on mental health. There are so many strands to the petition that it is welcome—although that is the wrong word, obviously—in the context of the more general inquiry on mental health services for young people. The petition certainly adds to some of our current inquiries and, as you suggest, it would be very useful to include it in the mental health inquiry.
I hope that the petitioners will be able to engage with the inquiry as it progresses.
As usual, it would be sensible to write to the Scottish Government seeking its views on the action called for in the petition, which suggests very practical things. We should also look at how we can ensure that the petition and its suggestions are part of our inquiry. We will get more detail on that at a later stage. Is that agreed?
Members indicated agreement.
Again, I thank the petitioner for bringing the matter to our attention.
I suspend the meeting briefly to allow witnesses for the next agenda item to come to the table.
09:32 Meeting suspended.09:32 On resuming—
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