End-of-life care must be fixed before any assisted dying legislation, charities say
Three and a half years ago, Tim Daly was given just a few months to live. Born with learning disabilities, he later developed cancer, which kept returning.
Despite being very sick, Tim can still live at home with his mum Valerie, because of support from his palliative care nurse Phoebe Mooney.
“It’s really sad to see him deteriorate,” Phoebe says during a visit to Tim.
Tim Daly, who lives at home with his mother Valerie
“When I first started seeing him he was independently mobile in his wheelchair. He would take lots of videos. He’d be super, super chatty.”
It is clear Tim and Phoebe share a special bond, but working in such an emotionally demanding role can be challenging.
“I’m not going to lie, I do cry quite a lot at work,” Phoebe says. “Particularly when things don’t go so well, which they don’t at times.”
Phoebe Mooney, Tim’s palliative care nurse
Tim’s mother Valerie Daly is 82 and says she wouldn’t be able to keep Tim at home without the support she gets from St Christopher’s Hospice in Sydenham, southeast London, where Phoebe works.
“I couldn’t do this without them,” she says. “It’s just knowing that there’s somebody there. Somebody who cares. Somebody who knows Tim.”
The support Valerie and Tim get is far from guaranteed across the UK.
As MPs consider legalising assisted dying, with a bill being introduced to parliament today, the quality of the country’s end-of-life care is being questioned.
“It’s really important we’re talking about funding for hospices at the same time,” says Jan Noble, the director of quality and innovation at St Christopher’s.
Jan Noble, the director of quality and innovation at St Christopher’s Hospice
“Because people need to know that they’re going to get the right symptom control and support if they are approaching the end of life. And actually it’s not all about assisted dying.
“People are fearful because at the moment hospices throughout the country haven’t got the adequate funding, which means care can be a postcode lottery.”
St Christopher’s Hospice neither supports nor opposes a change in the law, but the hospice sector is a strong voice in the debate.
Residents at St Christopher’s Hospice
Hospices rely on charity to survive, with the government providing only around a third of their funding.
The sector has concerns about whether the health system could cope with the additional pressure that assisted dying would bring.
“While it’s not for us to take a view either way, what we would say is that this is a very fundamental change to consider introducing into a system which is already under really significant stress,” says Charlie King, deputy director of external affairs at Hospice UK.
Charlie King, deputy director of external affairs at Hospice UK
“We’ve got hospices who are cutting back their services already, making frontline staff redundant, because they’re no longer able to fund those services.
“Whether or not assisted dying is introduced by this government, we must fix the end-of-life care system in the UK,” he said.
“This government has inherited huge challenges in the hospice sector, as well as a £22bn black hole in the public finances, so these problems will take time to fix,” a spokesperson for the Department of Health and Social Care said.
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“Whilst the majority of palliative and end-of-life care is provided by the NHS, we recognise the vital role voluntary organisations including hospices play in providing support to people at end of life and their families.
“We are determined to shift more healthcare out of hospitals and into the community, to ensure patients and their families receive personalised care in the most appropriate setting, and hospices will have a big role to play in that shift.”
Lynda Browne, 59, has experienced the best and worst of end-of-life care.
Lynda Browne, whose mother and aunt had very difference experiences of palliative care
Her mother died peacefully and comfortably at a Marie Curie Hospice, but her aunt Mary chose to die at home and Lynda was devastated by the lack of care she received.
“We had to buy her incontinence pads, we had to buy different creams because the deliveries weren’t regular or there was nothing available or you couldn’t get through,” she says.
Lynda’s aunt (left) and mother who both received palliative care
“We had to chase everyone for everything and it’s just so tiring all the time having to fight.”
It’s a problem palliative care doctors say needs to be urgently addressed.
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“We only get partial funding from the NHS,” says Dr Sarah Wells, medical director for the Marie Curie Hospice West Midlands.
“We’re having to rely on fun runs and bake sales and our charity shops to raise money to provide great end-of-life care for people.”
Marie Curie, like St Christopher’s and Hospice UK, has a neutral position on assisted dying.
“We need to be talking about death, dying and bereavement,” says Dr Wells. “What we’re not neutral on is the need for sustainable funding.”
Specialist search teams, police dogs and divers have been dispatched to find two sisters who vanished in Aberdeen three days ago.
Eliza and Henrietta Huszti, both 32, were last seen on CCTV in the city’s Market Street at Victoria Bridge at about 2.12am on Tuesday.
The siblings were captured crossing the bridge and turning right onto a footpath next to the River Dee in the direction of Aberdeen Boat Club.
Henrietta Huszti. Pic: Police Scotland
Eliza Huszti. Pic: Police Scotland
Police Scotland has launched a major search and said it is carrying out “extensive inquires” in an effort to find the women.
Chief Inspector Darren Bruce said: “Local officers, led by specialist search advisors, are being assisted by resources including police dogs and our marine unit.”
Aberdeenshire Drone Services told Sky News it has offered to help in the search and is waiting to hear back from Police Scotland.
CCTV of the sisters. Pic: Police Scotland
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The sisters, from Aberdeen city centre, are described as slim with long brown hair.
Police said the Torry side of Victoria Bridge where the sisters were last seen contains many commercial and industrial units, with searches taking place in the vicinity.
The force urged businesses in and around the South Esplanade and Menzies Road area to review CCTV footage recorded in the early hours of Tuesday in case it captured anything of significance.
Drivers with relevant dashcam footage are also urged to come forward.
CI Bruce added: “We are continuing to speak to people who know Eliza and Henrietta and we urge anyone who has seen them or who has any information regarding their whereabouts to please contact 101.”
Glasgow has been a city crying out for solutions to a devastating drugs epidemic that is ravaging people hooked on deadly narcotics.
We have spent time with vulnerable addicts in recent months and witnessed first-hand the dirty, dangerous street corners and back alleys where they would inject their £10 heroin hit, not knowing – or, in many cases, not caring – whether that would be the moment they die.
“Dying would be better than this life,” one man told me.
It was a grim insight into the daily reality of life in the capital of Europe’s drug death crisis.
Scotland has a stubborn addiction to substances spanning generations. Politicians of all persuasions have failed to properly get a grip of the emergency.
But there is a new concept in town.
From Monday, a taxpayer-funded unit is allowing addicts to bring their own heroin and cocaine and inject it while NHS medical teams supervise.
A dirty needle thrown less than 100 metres from the new injection centre
It may be a UK-first but it is a regular feature in some other major European cities that have claimed high success rates in saving lives.
Glasgow has looked on with envy at these other models.
One supermarket car park less than a hundred metres from this new facility is a perfect illustration of the problem. An area littered with dirty needles and paraphernalia. A minefield where one wrong step risks contracting a nasty disease.
Drugs paraphernalia in a supermarket car park in Glasgow, near the new facility
It is estimated hundreds of users inject heroin in public places in Glasgow every week. HIV has been rife.
The new building, which will be open from 9am until 9pm 365 days a year, includes bays where clean needles are provided as part of a persuasive tactic to lure addicts indoors in a controlled environment.
There is a welcome area where people will check in before being invited into one of eight bays. The room is clinical, covered in mirrors, with a row of small medical bins.
Clean needles are provided to lure addicts to inject in a controlled environment
There are eight bays users can inject in
We were shown the aftercare area where users will relax after their hit in the company of housing and social workers.
The idea is controversial and not cheap – £2.3m has been ring-fenced every year.
The aftercare area
Read more: ‘Dying would be better than my £1,000 a month heroin addiction’
Authorities in the city first floated a ‘safer drug consumption room’ in 2016. It failed to get off the ground as the UK Home Office under the Conservatives said they would not allow people to break the law to feed habits.
The usual wrangle between Edinburgh and London continued for years with Downing Street suggesting Scotland could, if it wanted, use its discretion to allow these injecting rooms to go ahead.
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The stalemate ended when Scotland’s most senior prosecutor issued a landmark decision that it would not be in the public interest to arrest those using such a facility.
One expert has told me this new concept is unlikely to lead to an overall reduction in deaths across Scotland. Another described it as an expensive vanity project. Supporters clearly disagree.
The question is what does success look like?
The big test will be if there is a spike in crime around the building and how it will work alongside law enforcement given drug dealers know exactly where to find their clients now.
It is not disputed this is a radical approach – and other cities across Britain will be watching closely.
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