‘Cruel' postcode lottery to access life-changing drug
Parents of children with Duchenne muscular dystrophy are struggling to access a free drug, givinostat, on the NHS due to limited availability and a " postcode lottery" system described by a charity as 'cruel'.
Givinostat, which slows the progression of Duchenne and prolongs walking ability in children, is offered at no cost by a drug firm while it awaits NHS approval.
Some NHS trusts are reportedly delaying or refusing access, citing monitoring costs (approximately £1,900 per patient annually) as a barrier, while others are drawing up priority lists.
Duchenne UK, a charity, is assisting families in their fight for givinostat, while the government maintains the decision rests with individual NHS trusts.
NHS England says that the first NICE committee meeting to consider the treatment is scheduled for July, and it is ready to explore fast-tracking access if the manufacturer offers a cost-effective price.
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Powys County Times
22 minutes ago
- Powys County Times
Health leader condemns ‘black service, not NHS service' received by mother
A health leader has condemned racial inequalities in the health service, saying that his mother received a 'black service, not an NHS service' as she died. Lord Victor Adebowale, chairman of the NHS Confederation, described the death of his 92-year-old mother as 'undignified'. His mother Grace, who worked as an NHS nurse for 45 years, died in January of suspected lung cancer. But her cancer was not detected until after she died. Her case highlights systemic racial disparities in healthcare, Lord Adebowale said. 'I just think there are too many situations where people that look like me and shades of me don't get the service,' he said. In an emotional speech, Lord Adebowale told the NHS ConfedExpo conference in Manchester: 'It was not the dignified death that we would have wanted for her. It wasn't the death she deserved. 'So it makes me clear about the need to address the inequity. I think she got a black service, not an NHS service. 'So I have to address the inequity that still exists within the NHS, in terms of the experiences that people who look like me continue to receive. 'It just hasn't got any better.' He went on: 'It is not acceptable that someone who looks like me, on average waits 20 minutes longer in A&E than white patients. 'To achieve an inclusive, equitable NHS we need an inclusive equitable culture from top to bottom.' Mrs Adebowale emigrated from Nigeria to Scotland in the 1950s. Lord Adebowale, who grew up in Wakefield, said that he did not want to blame anyone, but he said that he wanted to highlight a 'systematic problem'. 'She lived to the age of 92 and you may think, 'well, she had the good old innings', but for a lot of those years she was in some discomfort, and it looks like she died from cancer,' he told reporters. 'It's still the case that if you look like me, you're more likely to discover that you've got cancer in A&E, and that that for me is it's an example of two different services. 'I used the phrase 'black service'… you only have to look at the stats – across all the major disease categories that we talk about, black people have a worse experience and worse outcomes – we've known that for years, I'm not saying anything new. 'My mother is an episodic example of a systematic problem. 'We've got a cancer programme, we've got a cancer we've had targets for diagnostics, and pathways, and yet, people like my mother…' Lord Adebowale, who established the NHS Race and Health Observatory in 2021 to try and tackle inequalities experienced by black and minority ethnic patients in healthcare, went on: 'I just think there are too many, too many situations where people that look like me and shades of me don't get the service. 'What I'm talking about is a systemic problem exampled by what I have experienced a my mum, and I think she represents a lot of other mums out there and lots of other people out there.' Asked about his comments about a 'black service', Lord Adebowale went on: 'Why did I (say) it? Because I'm sick of it not changing like everyone else, and I'm close enough to it to know that it happens. 'I could have stood there and give you a load of stats, and you wouldn't be talking to me. 'And my mum, I think, God bless her, I think she would have wanted me to say it.' He added: 'The disproportionate poor services that too many poor people and too many black people experience, that's what I'm sick of.' He said there was nothing in his mother's medical records to suggest she had cancer, adding: 'She went to A&E in a poor condition. 'My sister described a hospital that was really struggling when she went in, she had to argue for mum to get a room. 'It was a very busy day. There had to be a negotiation to find a space, which you shouldn't have to do, but that's what happens when people are under pressure.' He added: 'We haven't got to the bottom of it, and that's why I'm not blaming anybody, and I don't want to, but I can talk about my experience and my observation of what happened to my mum. 'How does that happen? I know it does happen. People have chronic diseases and people don't know and they die of them – I know it's more likely to happen if you're black, it's also more likely to happen if you're poor. 'It's all part of the same story. I used to own story to illustrate a bigger problem, which is systemic.' On his mother, whose full name was Grace Amoke Owuren Adebowale and who worked in various nursing sectors including mental health, acute care and maternity, he said: 'If you a nurse it is what you are, it's what you're born to do.' Commenting on Lord Adebowale's remarks, Professor Habib Naqvi, chief executive of the NHS Race and Health Observatory, said: 'We extend our sincere condolences, thoughts and support to Lord Victor and the Adebowale family. 'The loss of a beloved family member is extremely difficult. We thank Victor for the candour in sharing his personal testimony. 'The NHS Race and Health Observatory continues to support healthcare organisations in implementing meaningful change for ethnic minority patients, communities, and members of the healthcare workforce.' Kate Seymour, from the charity Macmillan Cancer Support, said: 'Stories like Grace Amoke Owuren Adebowale's highlight the heartbreaking reality for some when it comes to accessing cancer care in this country. 'It is categorically unacceptable that some people with cancer are having worse experiences simply because of who they are or where they live.' An NHS spokesperson said: 'Everyone – no matter their background – should receive the best NHS care possible. 'That's why we are working across the NHS to ensure that happens – from improving access to cancer diagnosis and treatment, to expanding health checks for Black and Asian communities and increasing uptake of blood pressure and cholesterol medication in under-served groups. 'But we know there is much more to do, and tackling health inequalities will form an important part of the upcoming 10 Year Health Plan.'
Daily Mail
34 minutes ago
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Father's Day treats contain 'reckless' sugar levels, shoppers warned
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Leader Live
34 minutes ago
- Leader Live
Health leader condemns ‘black service, not NHS service' received by mother
Lord Victor Adebowale, chairman of the NHS Confederation, described the death of his 92-year-old mother as 'undignified'. His mother Grace, who worked as an NHS nurse for 45 years, died in January of suspected lung cancer. But her cancer was not detected until after she died. Her case highlights systemic racial disparities in healthcare, Lord Adebowale said. 'I just think there are too many situations where people that look like me and shades of me don't get the service,' he said. In an emotional speech, Lord Adebowale told the NHS ConfedExpo conference in Manchester: 'It was not the dignified death that we would have wanted for her. It wasn't the death she deserved. 'So it makes me clear about the need to address the inequity. I think she got a black service, not an NHS service. 'So I have to address the inequity that still exists within the NHS, in terms of the experiences that people who look like me continue to receive. 'It just hasn't got any better.' He went on: 'It is not acceptable that someone who looks like me, on average waits 20 minutes longer in A&E than white patients. 'To achieve an inclusive, equitable NHS we need an inclusive equitable culture from top to bottom.' Mrs Adebowale emigrated from Nigeria to Scotland in the 1950s. Lord Adebowale, who grew up in Wakefield, said that he did not want to blame anyone, but he said that he wanted to highlight a 'systematic problem'. 'She lived to the age of 92 and you may think, 'well, she had the good old innings', but for a lot of those years she was in some discomfort, and it looks like she died from cancer,' he told reporters. 'It's still the case that if you look like me, you're more likely to discover that you've got cancer in A&E, and that that for me is it's an example of two different services. 'I used the phrase 'black service'… you only have to look at the stats – across all the major disease categories that we talk about, black people have a worse experience and worse outcomes – we've known that for years, I'm not saying anything new. 'My mother is an episodic example of a systematic problem. 'We've got a cancer programme, we've got a cancer we've had targets for diagnostics, and pathways, and yet, people like my mother…' Lord Adebowale, who established the NHS Race and Health Observatory in 2021 to try and tackle inequalities experienced by black and minority ethnic patients in healthcare, went on: 'I just think there are too many, too many situations where people that look like me and shades of me don't get the service. 'What I'm talking about is a systemic problem exampled by what I have experienced a my mum, and I think she represents a lot of other mums out there and lots of other people out there.' Asked about his comments about a 'black service', Lord Adebowale went on: 'Why did I (say) it? Because I'm sick of it not changing like everyone else, and I'm close enough to it to know that it happens. 'I could have stood there and give you a load of stats, and you wouldn't be talking to me. 'And my mum, I think, God bless her, I think she would have wanted me to say it.' He added: 'The disproportionate poor services that too many poor people and too many black people experience, that's what I'm sick of.' He said there was nothing in his mother's medical records to suggest she had cancer, adding: 'She went to A&E in a poor condition. 'My sister described a hospital that was really struggling when she went in, she had to argue for mum to get a room. 'It was a very busy day. There had to be a negotiation to find a space, which you shouldn't have to do, but that's what happens when people are under pressure.' He added: 'We haven't got to the bottom of it, and that's why I'm not blaming anybody, and I don't want to, but I can talk about my experience and my observation of what happened to my mum. 'How does that happen? I know it does happen. People have chronic diseases and people don't know and they die of them – I know it's more likely to happen if you're black, it's also more likely to happen if you're poor. 'It's all part of the same story. I used to own story to illustrate a bigger problem, which is systemic.' On his mother, whose full name was Grace Amoke Owuren Adebowale and who worked in various nursing sectors including mental health, acute care and maternity, he said: 'If you a nurse it is what you are, it's what you're born to do.' Commenting on Lord Adebowale's remarks, Professor Habib Naqvi, chief executive of the NHS Race and Health Observatory, said: 'We extend our sincere condolences, thoughts and support to Lord Victor and the Adebowale family. 'The loss of a beloved family member is extremely difficult. We thank Victor for the candour in sharing his personal testimony. 'The NHS Race and Health Observatory continues to support healthcare organisations in implementing meaningful change for ethnic minority patients, communities, and members of the healthcare workforce.'Kate Seymour, from the charity Macmillan Cancer Support, said: 'Stories like Grace Amoke Owuren Adebowale's highlight the heartbreaking reality for some when it comes to accessing cancer care in this country. 'It is categorically unacceptable that some people with cancer are having worse experiences simply because of who they are or where they live.' An NHS spokesperson said: 'Everyone – no matter their background – should receive the best NHS care possible. 'That's why we are working across the NHS to ensure that happens – from improving access to cancer diagnosis and treatment, to expanding health checks for Black and Asian communities and increasing uptake of blood pressure and cholesterol medication in under-served groups. 'But we know there is much more to do, and tackling health inequalities will form an important part of the upcoming 10 Year Health Plan.'
