MSPs keep petition open to the delight of Inverness campaigner

MSPs on the Scottish Parliament’s Public Petitions Committee have today (Sept 10) agreed to hear evidence from a leading Consultant Neurosurgeon to support an Inverness campaigner’s petition for the introduction of focus ultra sound technology to Scotland to treat people with Essential Tremor.

Mary Ramsay, from Dalneigh, Chair of the Scottish Tremor Society, is asking the Scottish Government to back the provision of magnetic resonance-guided focused ultrasound (MRgFUS) equipment costing an estimated £1.6million.

Today her MSP, Labour’s Rhoda Grant, spoke to the cross-party committee asking for the petition to be kept open and highlighting that campaigners were keen that the committee hear oral evidence from Professor Dipankar Nandi, a leading medical expert in the field, and also view a short video of a patient’s experience of the treatment.

Committee Convener, Johann Lamont MSP, said there was a consensus that there was still an issue to be followed up and the committee would seek to hear from the Professor, if not in person but by some other means.

Mrs Ramsay, who watched the virtual session from home on parliamentary television, said afterwards she was in tears at some of the emotional statements from MSPs.

“I’m absolutely delighted that the petition is remaining open and that they are going to hear from the professor. I am also hopeful that they will see the video on Geoff Sleight the patient who has benefited from the treatment. It’s quite remarkable the difference it has made to his life.

“I will not give up until this is available on the NHS.”

During the committee session, Mrs Grant, who represents the Highlands and Islands, said there was a definite sense of frustration that magnetic resonance-guided focused ultrasound (MRgFUS) technology was not yet available in Scotland but was in England and in other places throughout the world.

“Add to this, an energetic fund-raising campaign to make this equipment available to the whole of Scotland and you can see why the campaigners with Essential Tremor and their families are anxious that this committee and the Scottish Government really recognise the benefits of the therapy and how it can also save a huge amount of money to the NHS,” she said.

She explained the Scottish Government was aware that clinicians in Dundee were currently exploring the purchase of equipment and there were discussions are ongoing with NHS Scotland National Services Division about the development of a service.

Mrs Grant added: “Mary Ramsay asked me to make a plea to this committee to keep pushing for the technology to be available here. She says: ‘For me, and my part, if focussed ultrasound helps anyone to avoid what I went through, I will fight to my last breath to get it’. That is a measure of the petitioner to be honest. This is not going to benefit her, but she will not let up in making sure that nobody has to go through what she went through.”

The committee members, including Caithness, Sutherland and Ross MSP, Gail Ross, and North East MSP, Tom Mason, who has Parkinson’s, agreed they wanted to hear more about the treatment and backed keeping the petition open.

  1. Mrs Ramsay (64) has Essential Tremor and has undergone Deep Brain Stimulation (DBS), where electrodes are placed in her brain to help alleviate the condition.  Focus ultra sound is cheaper and less invasive. However, Mrs Ramsay would not benefit from focus ultrasound as it would be too risky to reverse DBS. Her condition causes involuntary and rhythmic shaking and can affect almost any part of the body.
  1. Fundraising for the equipment is being run by the University of Dundee. The technology uses MRI imaging to guide high powered, focused ultrasound to a very small point. At that point, molecules are vibrated extremely quickly, which creates intense local heat which destroys the tissue. The technology allows clinicians to target a very specific focal point – with very little heating produced in front of and behind that point, so only the targeted tissue is affected.

Essential tremor [ET] has no known cause. It is most common in the elderly but two-thirds in a recent survey developed symptoms of ET before the age of 50. ET affects both sexes and all ethnic groups and children.

People with ET may be so embarrassed by their tremor that they do not leave their home and become depressed. This embarrassment may impact on jobs and income. As many as 25% of patients are forced to retire prematurely, and in one study 60% said they had chosen not to apply for a job or promotion because of uncontrollable shaking. In a recent UK survey by the National Tremor Foundation, almost 20% of respondents had to stop working completely, 7% had to change occupation, and 6% had to reduce their working hours. In that survey, 12% said that they did not go out to socialise, 31% did so rarely, and 45% did go out but felt self-conscious. Only 12% said that their tremor did not significantly impact their social life. 18% of respondents felt that they were a burden on their family, 21% reported a severe impact on their mental health, 26% reported poor self-esteem, and 15% considered that ET had negatively affected their physical fitness. If the tremor becomes severe, the patient even may become unable to feed or toilet independently and require residential care or a carer at home.

At present, the only non-pharmacological treatment for severe tremor that is having an unacceptable effect on someone’s quality of life is deep brain stimulation (DBS): as DBS is invasive surgery in which wires are permanently inserted into the brain, some people are not suitable for it because of other diseases (comorbidities) and some do not feel able to consent to a procedure which involves permanent implants and lifelong supervision.

LOCAL MSP, RHODA GRANT, CELEBRATES COMMUNITY’S EFFORTS TO CURE BLOOD CANCER

Celebrating the 8,614 potential lifesavers in the Highlands and Islands this Blood Cancer Awareness Month

 

To mark Blood Cancer Awareness Month this September, Rhoda Grant MSP took part in a digital ‘Day of Action’ to celebrate the number of potential stem cell donors in the Highlands and Islands on the Anthony Nolan register and raise awareness of the urgent need for more donors in light of the challenges to donor recruitment presented by the pandemic.

 

This day was marked by Anthony Nolan on Wednesday 9 September, as part of its Communities vs Blood Cancer campaign, which shines a spotlight on vital work being done locally to ensure that every patient in need of a stem cell transplant can find a lifesaving donor.

 

Anthony Nolan’s lifesaving work has been greatly enhanced at a local level by the charity’s eleven-year partnership with the Scottish Fire and Rescue Service, who undertake vital work in schools through the SFRS Education Programme.

 

In the Highlands and Islands, 8,614 potential stem cell donors are registered with Anthony Nolan. 23% of these donors are men aged 16-30, and the average age is 32.

 

In total, more than 800,000 people in the UK are on the Anthony Nolan register, any of whom could be a match for someone with blood cancer and asked to donate their stem cells to give a patient a second chance of life.

 

Now, Rhoda Grant is encouraging more people from the Highlands and Islands, particularly men aged 16-30 and people from Black, Asian and ethnic minority backgrounds, to register as stem cell donors and make sure that a match is available for everyone in need of a transplant. While anyone on the register could be a match for someone with blood cancer, men aged 16-30 are most likely to be asked to donate. They provide more than 50% of donations yet make up just 18% of the register. There is also a shortage of donors from non-white and mixed-race backgrounds.

 

Rhoda Grant MSP said: “I am very proud that the Highlands and Islands has 8,614 registered donors, any one of whom could offer the only chance of giving someone with blood cancer a second chance at life. Donating stem cells is straightforward but it could make an enormous difference to someone with no other chance of a cure.”

 

Henny Braund, Chief Executive of Anthony Nolan, said: “In the last year 977 selfless Scots from the Highlands and Islands joined the Anthony Nolan register, each one representing hope for patients with blood cancer, and blood disorders, in need of matching stem cell donors.

 

“This Blood Cancer Awareness Month residents can be proud of all the lifesavers in your community. To everyone from the Highlands and Islands who has taken the decision to join the register, thank you. It is vital we recruit more ethnically-diverse, young, male, donors to ensure everyone who needs a transplant can access one. Without you, there is no cure.”

 

For more information on Anthony Nolan visit anthonynolan.org/join.

 

Anthony Nolan uses its register to match potential stem cell donors to blood cancer patients in desperate need of a stem cell transplant. It also carries out vital research to make stem cell transplants more successful, and supports patients through their transplant journeys.

 

 

Inverness campaigner’s petition before Scottish Parliament committee this week

A Scottish Parliament committee will hear more submissions this Thursday (September 10) on an Inverness campaigner’s petition supporting the introduction of a focus ultra sound scanner to Scotland to treat people with Essential Tremor.

Mary Ramsay, from Dalneigh, Chair of the Scottish Tremor Society, is asking the Scottish Government to back the provision of magnetic resonance-guided focused ultrasound (MRgFUS) technology.

Mrs Ramsay’s petition will be heard at the Public Petitions Committee and she is backed by Highlands and Islands Labour MSP, Rhoda Grant, who has been a long-time supporter of the cause.

Previously the Public Petitions Committee agreed that the treatment had benefits and went back to the Scottish Government to ask why a decision has stalled, what was needed to achieve the introduction of the treatment and what the timescales were.

Mrs Ramsay (64), who has Essential Tremor, said: “I am really pinning my hopes that at last there will be movement on this by the Government.

“The effects of Essential Tremor can have a serious impact on a person’s life, with lack of understanding and awareness of the condition leading to ineffective treatment but also bullying. I want to prevent any child or adult going through verbal and physical abuse like I did.

“It is estimated that there could be 4000 people in Scotland with Essential Tremor. The main treatment at the moment is brain surgery or deep brain stimulation (DBS) which some people with the condition do not want to endure and DBS is expensive. The focus scanner is cheaper and is also a much less invasive procedure.”

Mrs Ramsay, who will be watching the committee virtually from her home, has had DBS. Her condition causes involuntary and rhythmic shaking and can affect almost any part of the body. She would not benefit from the ultra sound treatment but is passionate that others could.

Mrs Grant added: “At a time when the NHS is under severe pressure, I really believe that this innovation, which is already up and running in England, would not only save money in the long term but would really improve the quality of life for thousands of people.

“Mary has been a fantastic campaigner and has never given up and it would be a great day for her if she achieved her aim to help others.”

The MSP achieved cross-party support for a Scottish Parliament debate on Mary’s campaign in 2018.

  • Fundraising for the scanner is being run by the University of Dundee. The technology uses MRI imaging to guide high powered, focused ultrasound to a very small point. At that point, molecules are vibrated extremely quickly, which creates intense local heat which destroys the tissue. The technology allows clinicians to target a very specific focal point – with very little heating produced in front of and behind that point, so only the targeted tissue is affected.
  • Essential tremor [ET] has no known cause. It is most common in the elderly but two-thirds in a recent survey developed symptoms of ET before the age of 50. ET affects both sexes and all ethnic groups and children.
  • People with ET may be so embarrassed by their tremor that they do not leave their home and become depressed. This embarrassment may impact on jobs and income. As many as 25% of patients are forced to retire prematurely, and in one study 60% said they had chosen not to apply for a job or promotion because of uncontrollable shaking. In a recent UK survey by the National Tremor Foundation, almost 20% of respondents had to stop working completely, 7% had to change occupation, and 6% had to reduce their working hours. In that survey, 12% said that they did not go out to socialise, 31% did so rarely, and 45% did go out but felt self-conscious. Only 12% said that their tremor did not significantly impact their social life. 18% of respondents felt that they were a burden on their family, 21% reported a severe impact on their mental health, 26% reported poor self-esteem, and 15% considered that ET had negatively affected their physical fitness. If the tremor becomes severe, the patient even may become unable to feed or toilet independently and require residential care or a carer at home.
  • At present, the only non-pharmacological treatment for severe tremor that is having an unacceptable effect on someone’s quality of life is deep brain stimulation (DBS): as DBS is invasive surgery in which wires are permanently inserted into the brain, some people are not suitable for it because of other diseases (comorbidities) and some do not feel able to consent to a procedure which involves permanent implants and lifelong supervision.

 

 

 

MSP welcomes safety study on A9

Highlands and Islands Labour MSP, Rhoda Grant, has welcomed the commencement of a safety study on the A9 trunk road between North Kessock and Tore on the Black Isle.

The MSP has been calling for improvements at the Munlochy junction on this stretch of road since she was contacted by constituents who use the road regularly.

Mrs Grant said “Constituents contacted me with suggestions on how to make the junction safer and I have fed these in to the Transport Secretary and to Transport Scotland.

“I know the level of concern there is locally about having to cross the busy A9 dual carriageway to either enter or leave the Munlochy junction when travelling north and I am arranging to speak directly with the consultants who have been appointed to carry out the study of the area.

“I am pleased to see this next step taking place and I very much hope further safety measures will be introduced as a result.” she continued.

 

Rhoda Grant welcomes today’s announcement that Home Farm Care Home on Skye is being taken over by NHS Highland but says the public has a right to know what happened there

Regional Labour MSP Rhoda Grant has said the announcement that Home Farm Care Home on Skye is being taken over by NHS Highland is “extremely welcome”.

Home Farm had been under NHS supervision since May, after the home suffered a severe COVID-19 outbreak in which 10 residents died.

The facility had been operated by the private care provider HC-One.

The NHS stepped in to manage the home  when a court action brought by the Care Inspectorate saw the provider’s license for the site temporarily revoked.

It came after an unannounced inspection triggered by the COVID outbreak found “serious concerns” about care standards.

The legal action was dropped in August after the Inspectorate found “significant improvement” had been made.

Mrs Grant said it was good to know the care home had a secure future.

However, she has voiced concerns over the “secrecy that surrounds what happened” there.

She said: “There are probably many more care homes which need to be taken into public hands but what’s worrying me is all the secrecy that surrounds what happened in that home. The public needs to know if we are going to be able to move forward to protect our care homes in the future.”

Mrs Grant has requested a formal review of the Care Inspectorate’s decision to refuse to provide her with information she previously requested.

She said her repeated attempts to see the reports that the Care Inspection lodged with Inverness Sheriff Court when it dropped its court case against the care home owners HC-One were turned down on the basis they were not ready for publication.

Three reports have, however, been published today on the Care Inspectorate website.

But Mrs Grant said the delay was unacceptable and questions remain to be answered.

“The Care Inspectorate had previously informed me that these reports were not ready for publication which seems extraordinary since they should have provided some of the key evidence submitted to the Sheriff Court. While I am delighted they have now been published, serious questions that remain to be answered about whether they have been subsequently altered for public consumption. It might be that neither the Care Inspectorate, who had failed to check on Home Farm despite knowing there were serious infection control issues in January, nor the provider HC-One, had wanted their dirty washing aired to be in court. But if we are to prevent further tragic and unnecessary care home deaths in future, we need to know what went wrong.”

The MSP said she had been raising multiple questions around the matter for months.

She added: “My request for a breakdown of the costs of NHS Highland’s take-over project since March was turned down under Freedom of Information but I have appealed this decision. I want to know whether HC-One is being asked to foot any of this bill.

“I also asked the Scottish Government’s health secretary Jeane Freeman whether checks had revealed the source of the Home Farm Covid outbreak. I wanted to know whether it had been transmitted by infected patients who were transferred into the home from Raigmore Hospital. But Mrs Freeman said this information is not known.

“This, again, beggar’s belief. What we need now are dates of all admissions to Home Farm from hospital. We need to know whether those older people had been tested or not and we need to know the date Home Farm first reported Covid cases to the care inspectorate and those are questions I am asking.”

Ends.

Delay in implementing speed limit signs

Transport Scotland has written to Highlands and Islands Labour MSP Rhoda Grant saying that there will now be a delay in putting up new speed limit signs on the A9 Tain bypass.

“While this is frustrating for all those campaigners who welcomed the new 50mph limit on this stretch, I can understand why Covid-19 has had an effect on ordering the signs,” said Mrs Grant.

“However, it’s good to know the groundwork is taking place to speed up the process when the signs arrive.

“I would just like to emphasise that before the new speed limit was brought in, there were consultations with the community council, the police and local authority.

“Transport Scotland has confirmed a further investigation into long-term options for the Lidl and Asda junctions are progressing and will also consider the community’s idea of roundabouts at this location.”

 

Transport Scotland said: “Further to our letter of 30 July, we have been advised by BEAR Scotland that their specialist supplier of traffic signs is currently managing a backlog of orders as a result of Covid-19 related factory closures and demand for signage for new active travel projects. As a result, the installation of speed limit signs on the A9 Tain Bypass has been delayed by approximately four to six weeks, based on timescales quoted by BEAR Scotland’s suppliers. To mitigate against these delays, BEAR Scotland commenced construction of sign foundations and posts on Friday 28 August, in advance of delivery of the signs, allowing installation to be expedited once these are received.

We have reinforced the importance of these works at Tain to both BEAR Scotland and their sign suppliers and have been assured that the new speed limit signage will be in place as soon as possible.”