Down's syndrome: New research launched by Ulster University
"Be yourself and follow your dreams."That is the message from actor Dr James Martin MBE, who appeared in the Oscar-winning An Irish Goodbye, as he launched an important research project into Down's syndrome at Ulster University.It is hoped it will identify areas where more support is needed for those living with the condition.The five year research project is called 'My Life with Down Syndrome' and it will look at lifestyle from birth through to adulthood.
James Martin said it is important people take part."I have two of my friends who would have health problems and they have Down's syndrome too," James told BBC News NI. "I don't really have a heart problem myself. And it's nice to see what their experience of life is."James is an honorary Ulster University graduate and said it was important that young people with Down's syndrome continued to be listened to and supported."I found my thing was drama. I'm an actor," he said."Yes I've an honorary doctorate and an MBE so all that is really nice, but if it wasn't for these charities in lockdown and during Covid we'd be snookered."So, its going to be nice to know what it's going to be like in the next 15 years."
The university said more than 1,450 people were born with the genetic condition between 1990 and 2023 in Northern Ireland.The project will examine the health, wellbeing and development of children, young people, and adults in Northern Ireland with Down's syndrome.It will engage directly with people with Down's syndrome, their families and carers, to address current deficits in provision.Professor Frank Casey, who is leading the research, said there was a need to further improve antenatal detection of Down's syndrome and examine the lack of co-ordination between the services that provide care for people.It would look at access to suitable educational and employment opportunities.
Ivan Martin, the well known broadcaster who is the father of James, said there are challenges with children "of any type of personality"."Everybody has their challenges. We got our shock in the delivery room when this wee fella arrived 33 years ago and here he is and he had Down's syndrome," Mr Martin said."From day one we decided that anything he wanted to do, we would let him try it."His son tried football, rugby, taekwondo and gymnastics but he really loved acting.
James' mother, Professor Suzanne Martin, said there were "a lot of tears along the way" as James visited hospitals and social workers, particularly when he was very young."School is difficult as well. All of that statementing process is very difficult so there are, what we would refer to as transition times, and at each transition time you are faced with a lot of decisions and a lot of trauma in some ways because it's not an easy path," Prof Martin said.However she said the change brought in by the 1987 Education Act which offered children the opportunity to go to school was clear to see."I think the measure of the impact of that is so clear in the life of James and his friends, most of whom are in gainful employment, some of whom live on their own, and that's in one generation," Prof Martin added."Frank and his team working in this way is fantastic, and supported by the Department of Heath to do this is really good to see."
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Daily Mirror
an hour ago
- Daily Mirror
Dame Judi Dench shares plea after watching loved ones 'slip away'
Estimates suggest that almost one million people are living with dementia in the UK, but one in three remain undiagnosed Dame Judi Dench is urging the Government to provide earlier NHS diagnosis for people with dementia. The Oscar-winning actress supports a new campaign and petition by Alzheimer's Research UK, advocating for quicker diagnosis of the condition. Nearly a million people in the UK live with dementia, yet approximately one in three remains undiagnosed. Alzheimer's Research UK reports that in certain parts of England, people can wait as long as a year for diagnosis after referral, with those in the most deprived regions experiencing even greater delays. Dame Judi, 90, said: "Dementia doesn't just take away memories – it can take away identity, connection, and the future you thought you had. Watching loved ones slip away, and not knowing why, is an experience no one should have to go through without answers. "Many people across the UK are still waiting far too long for a dementia diagnosis – or never receive one at all. That means they miss out on vital support, on the chance to plan ahead, opportunities to get involved in research, and on precious time. "A diagnosis may not fix everything, but it gives people understanding, clarity, and some control at a time when everything feels uncertain. It allows families to make the most of the moments they have left. "That's why I've signed Alzheimer's Research UK's petition – and why I'm asking the public to do the same. Together, we can call on Government to fix the crumbling diagnosis system and make sure no one faces dementia unseen." The new Alzheimer's Research UK campaign, Dementia Unseen, comes after the NHS target to ensure 66.7% of people with dementia receive a diagnosis was removed from NHS planning guidance for 2025-26. It is calling for people with suspected dementia to be referred by their GP to see a specialist within six weeks – and to have a diagnosis and treatment plan in place within 18 weeks. Hilary Evans-Newton, chief executive of Alzheimer's Research UK, said: "Everyone who has dementia should have the right to know the disease or diseases causing it, and to be diagnosed early enough to get treatments that help with its symptoms. "But hundreds of thousands of people are waiting too long for a diagnosis, causing uncertainty, and adding distress to an already challenging situation. "We're incredibly grateful to Dame Judi for helping shine a light on what people with dementia need – and to everyone who has already signed our petition and stands with us. "More people are seeking answers, so it's vital that the NHS and government act now to fix the system – because no one should face dementia alone or unseen." Professor Fiona Carragher, chief policy officer at Alzheimer's Society, also added: "Everyone living with dementia deserves the clarity and dignity of an early and accurate diagnosis. Yet, more than a third of people living with this terminal condition are in the dark because they haven't been diagnosed, with many left to struggle alone without the care, support and treatment a diagnosis can bring. "In fact, on average people experience dementia symptoms for three and a half years before they receive a diagnosis. For some time, we've been calling on the UK Government to urgently address dementia diagnosis and we welcome the recommendations in this new report. "In particular, we support the call for health services to have the right teams and technology they need to diagnose more people, and for more data on diagnosis so that resources can be targeted where they're needed most. "The science for dementia treatments is flying but the diagnosis system is failing. It is crucial governments invest in diagnosis across England, Wales and Northern Ireland so people can access the existing treatments of today, plan for the future, and be eligible for the life-changing treatments of tomorrow. "If our governments set bold and ambitious new dementia diagnosis rate targets to get more people diagnosed, this would bring significant benefits for individuals, their families, and for health and care services."
STV News
2 hours ago
- STV News
Judi Dench: Government must give people with dementia earlier diagnosis
Dame Judi Dench is calling on the Government to give people with dementia an earlier diagnosis on the NHS. The Oscar-winning actress is backing a new campaign and petition by Alzheimer's Research UK for people with the condition to be told much quicker if they have it. Almost a million people in the UK are living with dementia, but about one in three do not have a diagnosis. According to Alzheimer's Research UK, people in some parts of England can wait up to a year for a diagnosis after being referred, while those in the most deprived areas face longer delays. Dame Judi said: 'Dementia doesn't just take away memories – it can take away identity, connection, and the future you thought you had. 'Watching loved ones slip away, and not knowing why, is an experience no one should have to go through without answers. 'Many people across the UK are still waiting far too long for a dementia diagnosis – or never receive one at all. 'That means they miss out on vital support, on the chance to plan ahead, opportunities to get involved in research, and on precious time. 'A diagnosis may not fix everything, but it gives people understanding, clarity, and some control at a time when everything feels uncertain. It allows families to make the most of the moments they have left. 'That's why I've signed Alzheimer's Research UK's petition – and why I'm asking the public to do the same. 'Together, we can call on government to fix the crumbling diagnosis system and make sure no one faces dementia unseen.' The new Alzheimer's Research UK campaign, Dementia Unseen, comes after the NHS target to ensure 66.7% of people with dementia receive a diagnosis was removed from NHS planning guidance for 2025-26. Two breakthrough Alzheimer's drugs: lecanemab and donanemab, were rejected for use on the NHS last week. Alzheimer's Research UK is calling for people with suspected dementia to be referred by their GP to see a specialist within six weeks – and to have a diagnosis and treatment plan in place within 18 weeks. Hilary Evans-Newton, chief executive of Alzheimer's Research UK, said: 'Everyone who has dementia should have the right to know the disease or diseases causing it, and to be diagnosed early enough to get treatments that help with its symptoms. 'But hundreds of thousands of people are waiting too long for a diagnosis, causing uncertainty, and adding distress to an already challenging situation. 'We're incredibly grateful to Dame Judi for helping shine a light on what people with dementia need – and to everyone who has already signed our petition and stands with us. 'More people are seeking answers, so it's vital that the NHS and government act now to fix the system – because no one should face dementia alone or unseen.' Professor Fiona Carragher, chief policy officer at Alzheimer's Society, said: 'Everyone living with dementia deserves the clarity and dignity of an early and accurate diagnosis. Yet, more than a third of people living with this terminal condition are in the dark because they haven't been diagnosed, with many left to struggle alone without the care, support and treatment a diagnosis can bring. 'In fact, on average people experience dementia symptoms for three and a half years before they receive a diagnosis. 'For some time, we've been calling on the UK Government to urgently address dementia diagnosis and we welcome the recommendations in this new report. 'In particular, we support the call for health services to have the right teams and technology they need to diagnose more people, and for more data on diagnosis so that resources can be targeted where they're needed most. 'The science for dementia treatments is flying but the diagnosis system is failing. It is crucial governments invest in diagnosis across England, Wales and Northern Ireland so people can access the existing treatments of today, plan for the future, and be eligible for the life-changing treatments of tomorrow. 'If our governments set bold and ambitious new dementia diagnosis rate targets to get more people diagnosed, this would bring significant benefits for individuals, their families, and for health and care services.' Get all the latest news from around the country Follow STV News Scan the QR code on your mobile device for all the latest news from around the country
Glasgow Times
8 hours ago
- Glasgow Times
Judi Dench: Government must give people with dementia earlier diagnosis
The Oscar-winning actress is backing a new campaign and petition by Alzheimer's Research UK for people with the condition to be told much quicker if they have it. Almost a million people in the UK are living with dementia, but about one in three do not have a diagnosis. According to Alzheimer's Research UK, people in some parts of England can wait up to a year for a diagnosis after being referred, while those in the most deprived areas face longer delays. Dame Judi said: 'Dementia doesn't just take away memories – it can take away identity, connection, and the future you thought you had. 'Watching loved ones slip away, and not knowing why, is an experience no one should have to go through without answers. 'Many people across the UK are still waiting far too long for a dementia diagnosis – or never receive one at all. 'That means they miss out on vital support, on the chance to plan ahead, opportunities to get involved in research, and on precious time. 'A diagnosis may not fix everything, but it gives people understanding, clarity, and some control at a time when everything feels uncertain. It allows families to make the most of the moments they have left. 'That's why I've signed Alzheimer's Research UK's petition – and why I'm asking the public to do the same. 'Together, we can call on government to fix the crumbling diagnosis system and make sure no one faces dementia unseen.' The new Alzheimer's Research UK campaign, Dementia Unseen, comes after the NHS target to ensure 66.7% of people with dementia receive a diagnosis was removed from NHS planning guidance for 2025-26. Two breakthrough Alzheimer's drugs: lecanemab and donanemab, were rejected for use on the NHS last week. Alzheimer's Research UK is calling for people with suspected dementia to be referred by their GP to see a specialist within six weeks – and to have a diagnosis and treatment plan in place within 18 weeks. Hilary Evans-Newton, chief executive of Alzheimer's Research UK, said: 'Everyone who has dementia should have the right to know the disease or diseases causing it, and to be diagnosed early enough to get treatments that help with its symptoms. 'But hundreds of thousands of people are waiting too long for a diagnosis, causing uncertainty, and adding distress to an already challenging situation. 'We're incredibly grateful to Dame Judi for helping shine a light on what people with dementia need – and to everyone who has already signed our petition and stands with us. 'More people are seeking answers, so it's vital that the NHS and government act now to fix the system – because no one should face dementia alone or unseen.' The petition is at Professor Fiona Carragher, chief policy officer at Alzheimer's Society, said: 'Everyone living with dementia deserves the clarity and dignity of an early and accurate diagnosis. Yet, more than a third of people living with this terminal condition are in the dark because they haven't been diagnosed, with many left to struggle alone without the care, support and treatment a diagnosis can bring. 'In fact, on average people experience dementia symptoms for three and a half years before they receive a diagnosis. 'For some time, we've been calling on the UK Government to urgently address dementia diagnosis and we welcome the recommendations in this new report. 'In particular, we support the call for health services to have the right teams and technology they need to diagnose more people, and for more data on diagnosis so that resources can be targeted where they're needed most. 'The science for dementia treatments is flying but the diagnosis system is failing. It is crucial governments invest in diagnosis across England, Wales and Northern Ireland so people can access the existing treatments of today, plan for the future, and be eligible for the life-changing treatments of tomorrow. 'If our governments set bold and ambitious new dementia diagnosis rate targets to get more people diagnosed, this would bring significant benefits for individuals, their families, and for health and care services.'
