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.”
The prison service is starting to recategorise the security risk of offenders to ease capacity pressures, Sky News understands.
It involves lowering or reconsidering the threshold of certain offenders to move them from the closed prison estate (category A to C) to the open estate (category D) because there are more free cell spaces there.
Examples of this could include discounting adjudications – formal hearings when a prisoner is accused of breaking the rules – for certain offenders, so they don’t act as official reasons not to transport them to a lower-security jail.
Prisoners are also categorised according to an Incentives and Earned Privileges (IEP) status. There are different levels – basic, standard and enhanced – based on how they keep to the rules or display a commitment to rehabilitation.
Usually ‘enhanced’ prisoners take part in meaningful activity – employment and training – making them eligible among other factors, to be transferred to the open estate.
Insiders suggest this system in England and Wales is being rejigged so that greater numbers of ‘standard’ prisoners can transfer, whereas before it would more typically be those with ‘enhanced’ status.
Open prisons have minimal security and allow eligible prisoners to spend time on day release away from the prison on license conditions to carry out work or education.
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The aim is to help reintegrate them back into society once they leave. As offenders near the end of their sentence, they are housed in open prisons.
Many of those released as part of the early release scheme in October after serving 40% of their sentence were freed from open prisons.
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Overcrowding in UK prisons
They were the second tranche of offenders freed as part of this scheme, and had been sentenced to five years or more.
Despite early release measures, prisons are still battling a chronic overcrowding crisis. The male estate is almost full, operating at around 97% capacity.
Sky News understands there continue to be particular pinch points across the country.
Southwest England struggled over the weekend with three space-related ‘lockouts’ – which means prisoners are held in police suites or transferred to other jails because there is no space.
One inmate is believed to have been transported from Exeter to Cardiff.
A Ministry of Justice spokesperson said: “The new government inherited a prison system on the point of collapse. We took the necessary action to stop our prisons from overflowing and to protect the public.
“This is not a new scheme. Only less-serious offenders who meet a strict criteria are eligible, and the Prison Service can exclude anyone who can’t be managed safely in a category D prison.”
A prisoner who has served 12 years in jail for stealing a mobile phone was unable to attend a psychiatric assessment because of a lack of staff, his family claims.
According to psychiatrists, Thomas White has developed psychosis as a direct result of being handed a controversial indefinite jail term called imprisonment for public protection (IPP), which was abolished in 2012.
Ms White said her brother, who experiences religious hallucinations, was placed in segregation and needed three prison staff to release him from his cell – but they were not available due to staff shortages.
Sky News understands that Lord Blunkett, the former Labour home secretary who introduced the IPP sentence but now campaigns for reform, has asked prisons minister Lord Timpson to investigate.
What are IPP sentences?
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Thomas White, now aged 40, was one of more than 8,000 offenders who were given an IPP sentence – a type of open-ended prison sentence the courts could impose from 2005 until they were scrapped.
The sentence – which has been described as a form of “psychological torture” by human rights experts – was intended for serious violent and sexual offenders who posed a significant risk of serious harm to the public but whose crimes did not warrant a life term.
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Although the government’s stated aim was public protection, concerns quickly grew that IPP sentences were being applied too broadly and catching more minor offenders, partly due to the fact that previous convictions were taken into account when determining whether someone posed a “significant risk”.
Thomas was sentenced to two years for stealing the mobile phone in a non-violent exchange back in 2012 – but because he had 16 previous convictions for theft and robberies, he was given an IPP sentence and has served 12 years.
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What is an IPP sentence?
The coalition government scrapped the sentence in 2012, but the change was not applied retrospectively, meaning 2,852 prisoners remain behind bars – including 1,227 who have never been released.
The new government is under increasing pressure to act on the IPP crisis given they were introduced by Lord Blunkett – who has since said he feels “deep regret” about the way the sentence was used.
‘My brother is being seriously failed’
In an email to Lord Blunkett, seen by Sky News, Ms White said: “My brother had a psychiatric appointment on the 1 November to see if he could be admitted to an outside hospital as he has to have two signatures to be transferred to an outside hospital.
“The system is nothing but criminal – people like my brother are being seriously failed.
“We waited a long time to have Thomas assessed again by the psychiatrist. We more than likely won’t get the assessment again.”
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Inside the lives of IPP prisoners
James Frith, the Labour MP for Bury North, said: “Thomas’ case highlights why these sentences were abolished over a decade ago.
“Thomas’s indefinite imprisonment has had a hugely detrimental impact on his mental and physical wellbeing. Thomas should be a patient, not a prisoner.
“We know the prison system is underfunded and overcapacity, but this is no excuse for failing Thomas. I have been working with Clara, Thomas’ sister, and I have written to the Lord Chancellor to raise Thomas’s case and the wider issues of IPPs.
“Thomas has been denied appropriate assessment and care for too long, we will not give up this fight for what is right.”
The Ministry of Justice does not comment on individual medical cases.
It is understood Lord Timpson will respond to Lord Blunkett in due course.
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.
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.
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“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.”