Parents of children with life-limiting illnesses say lack of support is ‘unsustainable’

Published

2 years ago

April 26, 2023

admin

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.

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.

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.”

UK

Home secretary to announce extra £500m for neighbourhood policing

Published

3 hours ago

November 19, 2024

admin

Home secretary to announce extra £500m for neighbourhood policing

An extra £500m of additional funding will be given to neighbourhood policing, the home secretary is set to announce.

Yvette Cooper will also lay out plans for a new unit to improve the performances of police forces across the country to end the “postcode lottery” of how effectively crimes are dealt with.

The Home Office says the unit will directly monitor police performance in areas prioritised by the government, including tackling violence against women and girls and knife crime.

The home secretary will make the announcements in her first major speech at the annual conference of the National Police Chiefs’ Council and Association of Police and Crime Commissioners on Tuesday.

Politics latest: PM branded ‘desperate’ after talks with China’s Xi

Ms Cooper is expected to say: “Public confidence is the bedrock of our British policing model but in recent years it has been badly eroded, as neighbourhood policing has been cut back and as outdated systems and structures have left the police struggling to keep up with a fast-changing criminal landscape.

“That’s why we’re determined to rebuild neighbourhood policing, to improve performance across police forces and to ensure the highest standards are being upheld across the service.

“The challenge of rebuilding public confidence is a shared one for government and policing.

“This is an opportunity for a fundamental reset in that relationship, and together we will embark on this roadmap for reform to regain the trust and support of the people we all serve and to reinvigorate the best of policing.”

As well as the new government performance unit, ministers also hope to improve the relationship between the public and the police by standardising and measuring police response times – something that is not currently monitored.

In the aftermath of the summer riots, sparked by the Southport stabbings on 29 July, Ms Cooper said respect for the police needed to be restored after the “brazen abuse and contempt” shown by the perpetrators.

She said too often people feel “crime has no consequences” and that “has to change” as she promised to restore confidence in policing and the criminal justice system.

Dr Rick Muir, director of policing thinktank the Police Foundation, said: “A serious reform programme like this in policing is long overdue.

“Too often in the past, officers at the frontline have been let down by outdated technology, inadequate training and inefficient support services.

“Until these issues are addressed, the public won’t get the quality of policing they deserve.”

UK

Post Office Horizon Scandal: Four suspects identified by police

Published

6 hours ago

November 19, 2024

admin

Post Office Horizon Scandal: Four suspects identified by police

Four suspects have so far been identified by police investigating possible criminal charges in the Post Office scandal, Sky News has learned.

Sources have said that among the offences being considered are perverting the course of justice and perjury.

Hundreds of sub-postmasters were wrongly prosecuted for stealing from their branches between 1999 and 2015 after faulty Horizon software caused accounting errors.

Money latest: Trump policy ‘could wipe billions from UK economy’

The Metropolitan Police is a so-called core participant in the Post Office public inquiry and has been monitoring and assessing material submitted.

It is expected that the number of suspects being investigated by police could rise in the next six to 12 months.

More than a million documents are believed to be being sifted through and the number of police officers investigating the scandal has also risen from 80 to 100, with work across every single police force.

It is not expected, however, that any charges will be brought before 2027/28, and that time frame could be extended.

A Sky News source said the number of suspects was seemingly “just a starting point”.

A meeting took place this weekend between more than 150 sub-postmasters, including Sir Alan Bates, and the Metropolitan Police.

Sir Alan said he had been told by officers that “it was going to take a few years” and that there are “no restrictions on how high investigations will take them”.

He also said the priority for sub-postmasters was financial redress and then, after that, victims will be “looking for people to be held to account”.

A Metropolitan police spokesperson said: “Yesterday [17 November] we met with Alan Bates and some of the affected sub-postmasters to provide a brief on our progress and next steps.

“Our investigation team, comprising around 100 officers from forces across the UK, is now in place and we will be sharing further details in due course.

“Initially four suspects have been identified and we anticipate this number to grow as the investigation progresses.”

UK

British Airways flights delayed after ‘technical issue’

Published

6 hours ago

November 19, 2024

admin

British Airways flights delayed after 'technical issue'

A “technical issue” at British Airways has delayed flights, reportedly for thousands of passengers.

Travel journalist Simon Calder said on X: “British Airways IT system failure is causing delays of 1-2 hours on many BA flights this evening… As delays build up I fear there will be cancellations tonight/tomorrow.”

In a statement on Monday evening, British Airways said flights were “currently operating, but are experiencing delays” and that its teams were working to “resolve a technical issue affecting some of our systems”.

Later they said it had been resolved: “Our teams worked hard to resolve an issue we experienced for a short time earlier this evening.

“We’ve apologised to customers for delays to their flights and ensured they were able to reach their destinations as planned.”

Earlier media reports suggested dozens of flights were grounded and that communications systems were affected.

One X user pictured people queueing on the tarmac in Verona, Italy. “What has happened to the nations airline? Not fit for purpose,” they said.

Replying to another X user BA said: “Our website is down. We are doing all we can to return online as soon as possible.

“Hopefully not too long before the Captain has his load sheet. Thanks for your understanding. Have a good journey when it is safe for you to be airborne.”

A spokesperson for Heathrow Airport said: “We are aware of a technical issue that British Airways are investigating, and we will be working with them to provide updates to passengers as soon as they are available. Heathrow systems are operating as normal.”

In June many British Airways (BA) flights in Heathrow were delayed by several hours by a “technical fault” with baggage handling.

BA said there had been a “temporary technical fault” which had disrupted its baggage system at the airport and had apologised for the problems it caused.