The exhausted mother of a child with a life-limiting condition who is denied specialist palliative care at home on weekday evenings and at weekends has told Sky News her situation is “unsustainable”.
Emily Marsden is a full-time carer for her eight-year-old daughter Daisy who was born with Rett Syndrome, a rare genetic condition, that requires round-the-clock specialist nursing care.
Doctors warned Daisy only had weeks to live.
That was two years ago.
But looking after Daisy at home means that Emily only receives specialist palliative support for her daughter Monday to Friday, between 9am to 5pm.
“I think having to think about the possibility of your child not making it through the night is possibly one of the worst things you’re going to have to face, and having to face that without the right support is pretty awful really. It sometimes feels unsustainable,” Emily said.
She has asked for extra help, but specialist palliative care is not available in her area out of hours.
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Jackie Appleton knows exactly how Emily feels. She lost her seven-year-old daughter Amber May in March last year.
Jackie says she only received 24/7 palliative care for her daughter during the last three months of her life.
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Amber May was born with CACNA 1A. The rare genetic condition left her needing complex medical care but Jackie says she was made to feel “inadequate” and “greedy” every time she approached her local healthcare provider for help.
She told Sky News she battled for years to access specialist nursing support and this took away quality family time she should have spent with her daughter during her final years.
“I’m a mum of three, I don’t have the luxury to look after one child, I have to make sure the whole family is looked after but I was also made to feel as if I was being greedy asking for more, and I was told if I have more care then it’s taken away from another family who may need it,” Jackie said.
Health workforce researchers warn more families will be left without specialist palliative care unless recruitment is stepped up and existing staff are given more training.
The latest figures show the number of district nurses who can provide palliative care in the community has dropped by two-thirds in the past twenty years. And around 30% of these current staff are not qualified to give end-of-life care.
Alison Leary, chair of healthcare and workforce modelling at London South Bank University said: “I think district nursing is quite undervalued.
“For the first time we’ve seen district nursing numbers drop to under 4,000 in the country and that’s a very serious situation if we’re going to provide care in the community.”
Emily wants to enjoy every precious moment she has left with Daisy. But that is almost impossible when she does not get the support every mother of a child with a life-limiting condition should receive.
Andy Fletcher, chief executive of Together for Short Lives said: “These children can have very complex and unpredictable conditions and often need 24-hour care, seven days a week.
“However, care and support are not always available when families need it most, especially at night and at weekends. This can put huge pressure on already exhausted families.
“We are asking the government to urgently act and address the £300 million funding gap for children’s palliative care in England, invest in the workforce and futureproof the lifeline NHS England’s grant funding for children’s hospices to ensure support is in place to meet the children’s complex needs.
“For too long the needs of these children and their families have been overlooked in the planning and development of health and care policy, leading to critical inconsistency of access to support.
“This must change.
“Time is short for these families and access to the right, round-the-clock support is vital to help families make the most of every moment they have together.”
Former anti-corruption minister Tulip Siddiq has been named in a third inquiry being launched by authorities in Bangladesh investigating money laundering and power misuse.
At a media briefing in Dhaka held hours after Ms Siddiq resigned as a minister, investigators confirmed they were working on another probe involving the Labour MP.
It is the third Bangladesh inquiry and comes on top of questions about London properties she lives in or has lived in with links to her aunt, the ousted Bangladesh prime minister Sheikh Hasina and her Awami League party.
Director general of the Anti-Corruption Commission Akhtar Hossain told Sky News the organisation was “preparing another investigation against Tulip Siddiq and her uncle Tarique Siddique for money laundering, power misuse, and illegally occupying Bangladesh government property”.
Mr Hossain also said the investigation team in Bangladesh would contact the UK authorities if additional information was required.
A spokesperson for Ms Siddiq said: “No evidence has been presented for these allegations.
“Tulip Siddiq has not been contacted by anyone on the matter and totally denies the claims.”
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Tarique Siddique is Ms Siddiq’s uncle – the husband of her mother’s younger sister – and previously served as a defence and security adviser to her aunt Sheikh Hasina.
The new government has since accused Ms Hasina’s Awami League administration of crimes and corruption while in office.
Ms Siddiq quit as anti-corruption minister on Tuesday after links with her aunt and her political regime came under scrutiny.
It is claimed she has benefited financially from three London properties linked to her aunt and her allies.
She referred herself to the prime minister’s standards adviser Sir Laurie Magnus who said he had “not identified evidence of improprieties” but added it was “regrettable” Ms Siddiq had not been more alert to the “potential reputational risks” of the ties to her aunt.
Ms Siddiq said continuing in her role would be “a distraction” for the government but insisted she had done nothing wrong.
Earlier this week, Sky News revealed Bangladesh investigators were looking into Ms Siddiq as part of a separate corruption inquiry into the illegal allocation of land in a new town development outside of Dhaka.
Labour sources suggested these accusations were not genuine and Ms Siddiq had not been contacted by anyone in Bangladesh about the inquiries.
Nobel peace-prize winning economist Muhammad Yunus, who is leading Bangladesh’s interim government, said the London properties used by Ms Siddiq should be investigated and returned if she is found to have benefited from “plain robbery”.
Following her resignation, Professor Yunus said there will be a thorough investigation into properties and assets “tied to stolen Bangladeshi funds, including those linked to individuals with connections to the previous regime” and if it is proven they have benefited from embezzlement “we expect those assets to be returned to Bangladesh, where they rightfully belong”.
“Tulip Siddiq may not have entirely understood the source of the money and property that she was enjoying in London, but she knows now and should seek forgiveness from the people of Bangladesh,” he added.
Singer Linda Nolan, who rose to fame alongside her sisters in The Nolans, has died after several years of battling cancer.
The Irish star, 65, and her sisters Coleen, Maureen, Bernie, Denise and Anne, had a run of hits in the late 1970s and ’80s – including the disco classic I’m In The Mood For Dancing.
Paying tribute on The Nolans‘ X account, her sisters described her as “a pop icon and beacon of hope”, who “faced incurable cancer with courage, grace and determination, inspiring millions”.
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Linda died peacefully in hospital this morning, “embraced with love and comfort” with her siblings by her side, her agent Dermot McNamara said in a statement.
“As a member of The Nolans, one of the most successful girl groups of all time, Linda achieved global success; becoming the first Irish act to sell over a million records worldwide, touring the world and selling over 30 million records,” he said.
“Her distinctive voice and magnetic stage presence brought joy to fans around the world, securing her place as an icon of British and Irish entertainment.
“Beyond her incredible career, Linda dedicated her life to helping others, helping raise over £20m for numerous charities, including Breast Cancer Now, Irish Cancer Society and Samaritans, amongst countless others. Her selflessness and tireless commitment to making a difference in the lives of others will forever be a cornerstone of her legacy.”
Linda’s death came after she was admitted to hospital with pneumonia over the weekend. She began receiving end-of-life care after slipping into a coma on Tuesday, Mr McNamara said.
Details of a celebration of the star’s “remarkable life” will be shared in due course, he added.
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Linda was born to Tommy and Maureen Nolan in Dublin on 23 February 1959, the sixth of eight children.
Her parents were both singers and keen to turn their young family into a musical troupe. Linda made her stage debut aged just four.
Those early years put the siblings on track for a career in show business which lasted for decades. As well as I’m In The Mood For Dancing, The Nolans had hits with Gotta Pull Myself Together, Attention To Me and Don’t Make Waves, and they also had their own TV specials.
At their height, they toured with Frank Sinatra and were reported to have outsold The Beatles in Japan.
Linda left the group in 1983, but later reformed with her sisters for several comeback performances. She also became known for musical theatre, most notably performing the role of Mrs Johnstone in Blood Brothers for three years from 2000.
Four siblings struck by cancer
Linda was first diagnosed with breast cancer in 2006, and underwent a mastectomy to remove her left breast two days before her 47th birthday.
The sisters were diagnosed with different forms of the disease just days apart after they returned home from filming a series of their show, The Nolans Go Cruising. Linda had cancer of the liver, while Anne had breast cancer.
They went on to write Stronger Together, an account of their journey that included frank details of their treatments and the side effects.
But in 2023, Linda revealed the cancer had spread to her brain and she was beginning treatment as part of a new drug trial.
The Nolans lost their second-youngest sister, Bernie, to cancer in 2013, aged 52.
Linda’s husband of 26 years, Brian Hudson, died in 2007 after being diagnosed with skin cancer.
Anne Nolan is now cancer-free.
Tributes to star ‘who was always a joy’
TV star and singer Cheryl Baker and comedian Tommy Cannon are among those who have paid tribute.
“I’m heartbroken to hear about the passing of Linda Nolan,” Cannon wrote on X. “I had the pleasure of working with her on so many occasions, and she was always a joy – full of warmth and love. My thoughts and love are with the Nolan girls and the whole family.”
“The most incredible voice, the wickedest sense of humour, such a massive talent,” Baker wrote. “You’re with Brian now, Lin.”
Loose Women also sent its love to her family. Linda appeared as a guest panellist on the ITV chat show over the years, alongside her sister Coleen.
The Blackpool Grand Theatre described her as “a true Blackpool icon”.
Two teenagers and a woman have been arrested after a 14-year-old boy was stabbed to death on a bus in southeast London.
Kelyan Bokassa was on the 472 service in Woolwich when he was attacked just before 2.30pm on Tuesday 7 January.
The teenager died at the scene shortly after medical help arrived.
Two boys, aged 15 and 16, were arrested on Wednesday on suspicion of murder, and a 44-year-old woman was arrested on suspicion of assisting an offender.
Detective Chief Inspector Sarah Lee said: “While these arrests mark a significant step forward in this investigation, we continue to appeal for anyone with information about Kelyan’s murder to come forward and speak to us.
“I would like to thank officers for working around the clock in order to locate our suspects and praise the Woolwich community for their ongoing support and patience whilst we have carried out our investigation.
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“I know that this incident deeply affected you all, and I hope that these two arrests reassure you that we are doing everything to tackle violent offenders across London.”
The Metropolitan Police called the stabbing a “horrific attack”, while London mayor Sir Sadiq Khan said the “heartbreaking violence has absolutely no place in our city”.
Kelyan was an aspiring rapper, who was described as having “briefly” been a student at St Columbia’s Catholic Boys School in Bexleyheath.
Following his death, his mother Mary Bokassa described his troubled childhood to journalists.
She said he was taken into care, moved from school to school, and eventually fell into the clutches of criminal gangs.
Met Police officers were called to reports of a stabbing on a Route 472 bus at 2.28pm on 7 January on Woolwich Church Street, near its junction with the A205 South Circular Road.
Paramedics from the London Ambulance Service and London’s Air Ambulance attended the scene.
Police say Kelyan’s family are being supported by specialist officers as the investigation “remains ongoing”.