Latest news with #ClareSullivan
BBC News
05-08-2025
- Health
- BBC News
'Ashamed' Liverpool care home boss suspended from nursing
The manager of a care home where residents were said to be at risk of malnutrition and dehydration has been suspended from Clare Sullivan told a disciplinary hearing she was "ashamed" of the litany of concerns raised by the Care Quality Commission (CQC) about the standards of care at Cressington Court Care Home, Liverpool in April home, on Beechwood Road, was put into special measures when the CQC found that people were not bathed for up to four weeks, and that one person had lost more than six stone (38 kg) in a six-month Nursing and Midwifery Council (NMC) revoked the registration of Mrs Sullivan, who quit her job at the home after the CQC inspection. The CQC investigation rated as inadequate the home, which provided nursing and personal care for up to 56 Local Democracy Reporting Service wrote that the NMC fitness to practise hearing heard Mrs Sullivan, who had been a practising nurse since 2008, admitted dozens of charges against included failing: to ensure a catheter was changed appropriately, to ensure fire doors were able to close properly in residents' roomsto maintain the emergency call bell to complete audits of drug stock. Mrs Sullivan, who had worked in care for more than two decades and became the registered manager at Cressington in 2018, told the NMC panel that when she joined things were "not as they seemed", the home was in a lot of disrepair, the record keeping system was paper-based, and the majority of the nursing staff were agency nurses or self-employed. 'Completely stressed' The CQC inspection found Mrs Sullivan was "completely overwhelmed" and "completely stressed".Mrs Sullivan told the NMC panel she felt ashamed she did not take more action, and had let residents down. She added she was extremely remorseful for any harm that came to residents as a result of her Sullivan also said: "They lost faith in the whole sector. They trusted me, us all, to do our best."We failed them at that. I am ashamed I've become that person…"Mrs Sullivan added: "It's hard enough as it is to leave your loved ones and you expect them to be cared for. It's heartbreaking for them being told that their precious family hadn't been cared for in the best way…"The NMC panel suspended her registration for three months and noted her previous experience without any regulatory concerns or disciplinary action, and could not identify anything which may suggest a deep-seated attitude affecting report added: "You are highly unlikely to repeat your misconduct." Listen to the best of BBC Radio Merseyside on Sounds and follow BBC Merseyside on Facebook, X, and Instagram. You can also send story ideas via Whatsapp to 0808 100 2230.
The Advertiser
06-07-2025
- Health
- The Advertiser
Data registry funds plea in fight against MND
A rare debilitating disease that eats away at the nervous system to shut down the body claims the lives of two people in Australia each day and two more are diagnosed. Motor neurone disease (MND) robs individuals of the ability to walk, talk, swallow, and eventually breathe, as it impairs nerve cells responsible for transmitting signals from the brain and spinal cord to the muscles. With no known cure and limited treatment options, health advocates are calling on the government to launch a data registry with $12 million needed to know the extent of the illness nationwide and target specific support to affected patients. One of them is 41-year-old Canberra mother Sharon who is confined to a wheelchair. She started noticing a slight limp and other minor issues with her right leg and foot when she was playing netball. Within six months of being diagnosed in 2018 she started using a walker for short distances and a scooter for longer distances. She later had a feeding tube inserted and transitioned to using a wheelchair. "MND impacts every part of my body and every aspect of my life, but I'm just as intelligent and switched on as I've ever been," she said. The mother of two of boys communicates using an eye-gaze technology machine which converts pre-recorded sentences into words and has documented her journey on social media. "MND is not an incurable disease, we just haven't found the cure yet." More research needs to be done and consolidated through a national database on the causes of the disease, MND Australia CEO Clare Sullivan said. "It's one of those diseases we still don't know a lot about, there's no specific diagnosis," she told AAP. "You have to exclude everything else, and then you're left with motor neurone disease. "That also goes to why we need better data. We don't even know how many people in Australia have motor neurone disease." It's estimated that it affects about one in 10,000 people with about 2700 people in the country battling the degenerative condition, according to official figures extrapolated from different sources. The average life expectancy for a person diagnosed with MND is between two to three years. In a report published by the peak body earlier this year, it put the cost of the devastating disease at about $4.85 billion based on lost productivity, the unpaid carer burden and direct healthcare system costs. "As a country, we can be much more empathetic and inclusive of people with disabilities," Ms Sullivan said. A rare debilitating disease that eats away at the nervous system to shut down the body claims the lives of two people in Australia each day and two more are diagnosed. Motor neurone disease (MND) robs individuals of the ability to walk, talk, swallow, and eventually breathe, as it impairs nerve cells responsible for transmitting signals from the brain and spinal cord to the muscles. With no known cure and limited treatment options, health advocates are calling on the government to launch a data registry with $12 million needed to know the extent of the illness nationwide and target specific support to affected patients. One of them is 41-year-old Canberra mother Sharon who is confined to a wheelchair. She started noticing a slight limp and other minor issues with her right leg and foot when she was playing netball. Within six months of being diagnosed in 2018 she started using a walker for short distances and a scooter for longer distances. She later had a feeding tube inserted and transitioned to using a wheelchair. "MND impacts every part of my body and every aspect of my life, but I'm just as intelligent and switched on as I've ever been," she said. The mother of two of boys communicates using an eye-gaze technology machine which converts pre-recorded sentences into words and has documented her journey on social media. "MND is not an incurable disease, we just haven't found the cure yet." More research needs to be done and consolidated through a national database on the causes of the disease, MND Australia CEO Clare Sullivan said. "It's one of those diseases we still don't know a lot about, there's no specific diagnosis," she told AAP. "You have to exclude everything else, and then you're left with motor neurone disease. "That also goes to why we need better data. We don't even know how many people in Australia have motor neurone disease." It's estimated that it affects about one in 10,000 people with about 2700 people in the country battling the degenerative condition, according to official figures extrapolated from different sources. The average life expectancy for a person diagnosed with MND is between two to three years. In a report published by the peak body earlier this year, it put the cost of the devastating disease at about $4.85 billion based on lost productivity, the unpaid carer burden and direct healthcare system costs. "As a country, we can be much more empathetic and inclusive of people with disabilities," Ms Sullivan said. A rare debilitating disease that eats away at the nervous system to shut down the body claims the lives of two people in Australia each day and two more are diagnosed. Motor neurone disease (MND) robs individuals of the ability to walk, talk, swallow, and eventually breathe, as it impairs nerve cells responsible for transmitting signals from the brain and spinal cord to the muscles. With no known cure and limited treatment options, health advocates are calling on the government to launch a data registry with $12 million needed to know the extent of the illness nationwide and target specific support to affected patients. One of them is 41-year-old Canberra mother Sharon who is confined to a wheelchair. She started noticing a slight limp and other minor issues with her right leg and foot when she was playing netball. Within six months of being diagnosed in 2018 she started using a walker for short distances and a scooter for longer distances. She later had a feeding tube inserted and transitioned to using a wheelchair. "MND impacts every part of my body and every aspect of my life, but I'm just as intelligent and switched on as I've ever been," she said. The mother of two of boys communicates using an eye-gaze technology machine which converts pre-recorded sentences into words and has documented her journey on social media. "MND is not an incurable disease, we just haven't found the cure yet." More research needs to be done and consolidated through a national database on the causes of the disease, MND Australia CEO Clare Sullivan said. "It's one of those diseases we still don't know a lot about, there's no specific diagnosis," she told AAP. "You have to exclude everything else, and then you're left with motor neurone disease. "That also goes to why we need better data. We don't even know how many people in Australia have motor neurone disease." It's estimated that it affects about one in 10,000 people with about 2700 people in the country battling the degenerative condition, according to official figures extrapolated from different sources. The average life expectancy for a person diagnosed with MND is between two to three years. In a report published by the peak body earlier this year, it put the cost of the devastating disease at about $4.85 billion based on lost productivity, the unpaid carer burden and direct healthcare system costs. "As a country, we can be much more empathetic and inclusive of people with disabilities," Ms Sullivan said. A rare debilitating disease that eats away at the nervous system to shut down the body claims the lives of two people in Australia each day and two more are diagnosed. Motor neurone disease (MND) robs individuals of the ability to walk, talk, swallow, and eventually breathe, as it impairs nerve cells responsible for transmitting signals from the brain and spinal cord to the muscles. With no known cure and limited treatment options, health advocates are calling on the government to launch a data registry with $12 million needed to know the extent of the illness nationwide and target specific support to affected patients. One of them is 41-year-old Canberra mother Sharon who is confined to a wheelchair. She started noticing a slight limp and other minor issues with her right leg and foot when she was playing netball. Within six months of being diagnosed in 2018 she started using a walker for short distances and a scooter for longer distances. She later had a feeding tube inserted and transitioned to using a wheelchair. "MND impacts every part of my body and every aspect of my life, but I'm just as intelligent and switched on as I've ever been," she said. The mother of two of boys communicates using an eye-gaze technology machine which converts pre-recorded sentences into words and has documented her journey on social media. "MND is not an incurable disease, we just haven't found the cure yet." More research needs to be done and consolidated through a national database on the causes of the disease, MND Australia CEO Clare Sullivan said. "It's one of those diseases we still don't know a lot about, there's no specific diagnosis," she told AAP. "You have to exclude everything else, and then you're left with motor neurone disease. "That also goes to why we need better data. We don't even know how many people in Australia have motor neurone disease." It's estimated that it affects about one in 10,000 people with about 2700 people in the country battling the degenerative condition, according to official figures extrapolated from different sources. The average life expectancy for a person diagnosed with MND is between two to three years. In a report published by the peak body earlier this year, it put the cost of the devastating disease at about $4.85 billion based on lost productivity, the unpaid carer burden and direct healthcare system costs. "As a country, we can be much more empathetic and inclusive of people with disabilities," Ms Sullivan said.
West Australian
06-07-2025
- Health
- West Australian
Data registry funds plea in fight against MND
A rare debilitating disease that eats away at the nervous system to shut down the body claims the lives of two people in Australia each day and two more are diagnosed. Motor neurone disease (MND) robs individuals of the ability to walk, talk, swallow, and eventually breathe, as it impairs nerve cells responsible for transmitting signals from the brain and spinal cord to the muscles. With no known cure and limited treatment options, health advocates are calling on the government to launch a data registry with $12 million needed to know the extent of the illness nationwide and target specific support to affected patients. One of them is 41-year-old Canberra mother Sharon who is confined to a wheelchair. She started noticing a slight limp and other minor issues with her right leg and foot when she was playing netball. Within six months of being diagnosed in 2018 she started using a walker for short distances and a scooter for longer distances. She later had a feeding tube inserted and transitioned to using a wheelchair. "MND impacts every part of my body and every aspect of my life, but I'm just as intelligent and switched on as I've ever been," she said. The mother of two of boys communicates using an eye-gaze technology machine which converts pre-recorded sentences into words and has documented her journey on social media. "MND is not an incurable disease, we just haven't found the cure yet." More research needs to be done and consolidated through a national database on the causes of the disease, MND Australia CEO Clare Sullivan said. "It's one of those diseases we still don't know a lot about, there's no specific diagnosis," she told AAP. "You have to exclude everything else, and then you're left with motor neurone disease. "That also goes to why we need better data. We don't even know how many people in Australia have motor neurone disease." It's estimated that it affects about one in 10,000 people with about 2700 people in the country battling the degenerative condition, according to official figures extrapolated from different sources. The average life expectancy for a person diagnosed with MND is between two to three years. In a report published by the peak body earlier this year, it put the cost of the devastating disease at about $4.85 billion based on lost productivity, the unpaid carer burden and direct healthcare system costs. "As a country, we can be much more empathetic and inclusive of people with disabilities," Ms Sullivan said.
Perth Now
06-07-2025
- Health
- Perth Now
Data registry funds plea in fight against MND
A rare debilitating disease that eats away at the nervous system to shut down the body claims the lives of two people in Australia each day and two more are diagnosed. Motor neurone disease (MND) robs individuals of the ability to walk, talk, swallow, and eventually breathe, as it impairs nerve cells responsible for transmitting signals from the brain and spinal cord to the muscles. With no known cure and limited treatment options, health advocates are calling on the government to launch a data registry with $12 million needed to know the extent of the illness nationwide and target specific support to affected patients. One of them is 41-year-old Canberra mother Sharon who is confined to a wheelchair. She started noticing a slight limp and other minor issues with her right leg and foot when she was playing netball. Within six months of being diagnosed in 2018 she started using a walker for short distances and a scooter for longer distances. She later had a feeding tube inserted and transitioned to using a wheelchair. "MND impacts every part of my body and every aspect of my life, but I'm just as intelligent and switched on as I've ever been," she said. The mother of two of boys communicates using an eye-gaze technology machine which converts pre-recorded sentences into words and has documented her journey on social media. "MND is not an incurable disease, we just haven't found the cure yet." More research needs to be done and consolidated through a national database on the causes of the disease, MND Australia CEO Clare Sullivan said. "It's one of those diseases we still don't know a lot about, there's no specific diagnosis," she told AAP. "You have to exclude everything else, and then you're left with motor neurone disease. "That also goes to why we need better data. We don't even know how many people in Australia have motor neurone disease." It's estimated that it affects about one in 10,000 people with about 2700 people in the country battling the degenerative condition, according to official figures extrapolated from different sources. The average life expectancy for a person diagnosed with MND is between two to three years. In a report published by the peak body earlier this year, it put the cost of the devastating disease at about $4.85 billion based on lost productivity, the unpaid carer burden and direct healthcare system costs. "As a country, we can be much more empathetic and inclusive of people with disabilities," Ms Sullivan said.
News.com.au
04-06-2025
- Health
- News.com.au
Big Freeze shines a light on MND – and the Aussie tech helping sufferers take back control
MND strips voice and movement from thousands Big Freeze and Neale Daniher lead the national fight Control Bionics tech gives the silent a voice There's a reason it's called the Beast. Motor Neurone Disease (MND) creeps in quietly and slowly shuts the body down, one function at a time. It's a progressive neurological disease that attacks the motor neurons, the nerve cells that control movement. Over time, it robs people of their ability to move, speak, swallow, and eventually breathe. The average life expectancy after diagnosis is just 27 months. It's brutal with no known cure, but it's also brought out some of the most inspiring acts of human resilience. Big Freeze bringing hope to many If you've watched AFL on the King's (or Queen's) Birthday in the last decade, you've probably seen celebrities sliding into a pool of ice. That's the Big Freeze, FightMND's flagship event founded by former AFL great Neale Daniher, who was diagnosed in 2013 and is still fighting more than a decade later. Daniher, now 2025 Australian of the Year, has helped raise over $100 million for MND research. And the Big Freeze is back again this Monday, June 9, at the Dees vs Pies match, with the MCG expected to turn into a sea of blue to raise funds and awareness. But behind the icy stunts and the footy clash lies a deeper message: we can't give up. The CEO of MND Australia, Clare Sullivan, strongly believes it's important for people with MND to participate in activities of importance to them. 'For example, being able to tell their grandkids they love them, or being able to go out for a coffee with friends,' Sullivan told Stockhead. She shared a story of a Queensland man in hospital who couldn't speak or press a button to call the nurse. 'This person used his AAC (Augmentative and Alternative Communication) device to call his wife at home to communicate with her, requesting she call the hospital and ask them to provide him an extra blanket as he was cold. 'You can see from this how essential it is that people have the ability to communicate their needs.' Control Bionics helps the unheard be heard And this is where technology such as that offered by Aussie medtech firm Control Bionics (ASX:CBL) could play a crucial role. CBL isn't throwing people down ice slides, but what it's building is potentially life-changing. The company's NeuroNode tech uses EMG (electromyography) to detect the faint electrical signals the body sends to muscles, even if those muscles don't visibly move. These signals are then translated into digital commands. Think of it like a wearable mouse click powered by thought. This kind of assistive technology, Sullivan said, helps people with MND to be independent in their communication, which is essential in maintaining quality of life. 'The equipment is highly adaptable and flexible, which is essential because as a person deteriorates, it can be easily modified," she said. 'The devices are compatible with their 'voices' via voicebanking, which then enables people with MND to communicate in their 'own voice' further aiding in quality of life.' Sullivan also said it's important that access to this kind of technology happens early, because becoming familiar with how they work takes time. 'Practice is essential, and unfortunately we see is that people don't access it until far too late," she said. 'This means that often people give up because they are fighting against fatigue, and other symptoms that make it too hard.' CBL goes beyond voice Beyond NeuroNode, Control Bionics has added a new tool to its kit: NeuroStrip. This is a paper-thin wearable that reads both muscle signals (EMG) and movement data. It's built to be extra sensitive and comfortable, making it easier for people to use over long periods. While it helps with communication, NeuroStrip's potential goes further. CBL said it could be used in rehab, managing movement disorders, or even sports science, where tracking small muscle responses matters. Control Bionics is also stepping into mobility. Its new DROVE module, co-developed with Deakin University, brings smart navigation to powered wheelchairs. DROVE picks up muscle signals and translates them into movement, so a simple intention like 'go left' becomes action. For people with limited mobility, it's a big step towards more freedom without needing complex setups or invasive tech. But Control Bionics isn't alone in the fight. Adelaide-based Link Assistive, for instance, provides eye gaze technology designed to keep communication flowing even when movement becomes severely limited. Zyteq, out of Melbourne, offers a suite of voice and switch-based systems, helping people with MND stay connected using highly customised setups. Costly tech, crucial time Control Bionics is an approved NDIS provider, which means eligible Australians can access funding for its tech like NeuroNode and NeuroStrip. It's also worked closely with MND Associations to place devices into state equipment libraries, helping people get access earlier – often at low or no cost. But it's not always smooth sailing. 'This technology is expensive, and often there are a lot of hoops to get NDIS funding for this,' said Sullivan. Applications usually need detailed assessments from speech pathologists and occupational therapists, which can slow things down. And for those over 65, who aren't covered by the NDIS, the cost can sometimes be out of reach. MND Associations, Sullivan said, fundraise to make this tech available to those who need it most. 'The MND Associations are heavily reliant on community donations and generosity to purchase this equipment for hire, and often there are waiting lists as demand outstrips supply.' While technology like NeuroNode helps restore communication and independence, tackling neurodegenerative disease at their root will also require medical breakthroughs. That's where ASX biotechs come in. Neurizon Therapeutics (ASX:NUZ), for instance, is working on a promising drug for ALS. Neurotech (ASX:NTI) is developing cannabinoid-based therapies for brain disorders. And Neuren Pharmaceuticals (ASX:NEU) has already landed FDA approval for Rett syndrome.
