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Senior Tory tells May any NHS funding increase worth less than 4% could be ‘disastrous’ – Politics live

In an article in this week’s Spectator Fraser Nelson, the magazine’s editor, and James Forsyth, its political editor, claim the government is planning to announce a 3% increase in NHS spending around the time of its 70th anniversary in July. They say:

[Simon Stevens, the NHS England chief executive] is about to get what he demanded. Theresa May plans to give the NHS a present, ahead of its 70th birthday in July — a settlement of 3% extra a year, which would mean that by the next election NHS spending would be £350 million a week more than it is today. This means, much to [Philip] Hammond’s rage, that the famous Brexit bus pledge is to be honoured — though not of course with money saved by leaving the EU.

Stevens, ever wily, now wants the figure to be closer to 4%, and for the next decade. Hammond, a political realist, has accepted the case for giving significantly more money to the NHS. But the Treasury prefers an increase of around 3% and for five years, not ten. Nor has Hammond agreed that this sum ought to be dressed up as an NHS birthday present.

According to the BBC’s political editor Laura Kuenssberg, this increase has not yet been agreed, and there is talk of the increase in NHS spending being as low as 2% a year.

But even if the Spectator is right, and 3% is on the cards, May has been told this morning that this would not be enough. In fact, Sarah Wollaston, the Conservative MP and GP who chairs the Commons health committee, suggested on the Today programme that any increase less than 4% could be “disastrous”. She said:

The difficulty would be if [the government] make a funding announcement that is way below expectations, I think that would be disastrous. The figure we are hearing touted today, of 3%, that simply wouldn’t be high enough.

If we look at the long-term average since the start of the NHS, that’s been around 3.7%. And what we are hearing very clearly from today’s report is that we need a longterm average of 4%, and if possible more in the short term, to make up for the eight long years where we’ve had the longest squeeze in the NHS’s history.

By “today’s report”, she was referring to the report (pdf) from the Institute for Fiscal Studies and the Health Foundation saying the NHS needs a funding increase of around 4% just to secure “modest improvements”. We’ve splashed on the report.

Paul Johnson (@paul__johnson)

Cost of NHS that can cope:
-£2k tax every household.
The choice
-Tomorrow’s Guardian pic.twitter.com/0hXt6iHEE8

May 23, 2018

And here’s our story.

On the Today programme Wollaston said that a 3.3% increase in NHS funding (what the Specatator says is being planned) would just be enough to “stay where we are”. She went on:

If we want to improve services, we’re looking at 5% in the immediate few years, and 4% as a longterm average. And I think the government should look very seriously at these figures.

She also said she thought the public would be willing to pay more in tax to fund an increase in NHS spending.

Wollaston’s demand for a 5% increase in spending in the short term echoes what the IFS/Health Foundation report says. Here is an extract from the news release summarising its findings. (Their bold type, not mine.)

To secure some modest improvements in NHS services, funding increases of nearer 4% a year would be required over the medium term, with 5% annual increases in the short run. This would allow some immediate catch-up, enable waiting time targets to be met, and tackle some of the underfunding in mental health services. This would take spending in 2033–34 to 9.9% of national income, an increase of 2.6% of national income relative to 2018–19.

At the same time, pressures on social care spending are increasing and, if we continue with something like the current funding arrangements, adult social care spending is likely to have to rise by 3.9% a year over the next 15 years taking an extra 0.4% of national income, relative to today.

Put these figures together and health and social care spending is likely to have to rise by 2–3% of national income over the next 15 years.

I expect there will be more on this as the day goes on. But there is a lot else around, including Brexit developments.

Here is the agenda for the day.

After 10.30am: Andrea Leadsom, the leader of the Commons, will make her weekly business statement. She is expected to announce when MPs will debate the Lords amendments to the EU withdrawal bill.

11am: Jeremy Corbyn gives a speech at Queen’s University, Belfast. As Pippa Crerar and Jessica Elgot report, he will call on Theresa May to reconvene the British-Irish intergovernmental conference, set up under the Good Friday Agreement, to help restore the power-sharing government to Northern Ireland.

1pm: The Commons Brexit committee publishes a report on the Brexit negotiations.

4.15pm: Philip Hammond, the chancellor, gives a speech at the European Business Summit in Brussels.

As usual, I will be covering breaking political news as it happens, as well as bringing you the best reaction, comment and analysis from the web. I plan to post a summary at lunchtime and another in the afternoon.

You can read all today’s Guardian politics stories here.

Here is the Politico Europe round-up of this morning’s political news from Jack Blanchard. And here is the PoliticsHome list of today’ top 10 must reads.

If you want to follow me or contact me on Twitter, I’m on @AndrewSparrow.

I try to monitor the comments BTL but normally I find it impossible to read them all. If you have a direct question, do include “Andrew” in it somewhere and I’m more likely to find it. I do try to answer direct questions, although sometimes I miss them or don’t have time.

If you want to attract my attention quickly, it is probably better to use Twitter.

NHS warns patients they could lose text alerts as GDPR deluge continues

The National Health Service is texting patients to warn they could lose alerts about hospital and doctor appointments, joining the deluge of more than 1bn “GDPR” messages currently hitting personal inboxes to meet an EU deadline this week.

GDPR, which stands for General Data Protection Regulation, has been described as the biggest overhaul of online privacy since the birth of the internet, and comes into force on Friday May 25. It gives all EU citizens the right to know what data is stored on them and to have it deleted, plus protect them from privacy and data breaches. If companies fail to comply, they can be hit with fines of up to €20m (£17.5m) or 4% of global turnover.

Companies and organisations around the world – from giant corporations to charities and church groups – are now anxiously contacting users to check they are happy to carry on receiving their emails and texts.

Q&A

What is GDPR?

The European Union’s new stronger, unified data protection laws, the General Data Protection Regulation (GDPR), will come into force on 25 May 2018, after more than six years in the making.

GDPR will replace the current patchwork of national data protection laws, give data regulators greater powers to fine, make it easier for companies with a “one-stop-shop” for operating across the whole of the EU, and create a new pan-European data regulator called the European Data Protection Board.

The new laws govern the processing and storage of EU citizens’ data, both that given to and observed by companies about people, whether or not the company has operations in the EU. They state that data protection should be both by design and default in any operation.

GDPR will refine and enshrine the “right to be forgotten” laws as the “right to erasure”, and give EU citizens the right to data portability, meaning they can take data from one organisation and give it to another. It will also bolster the requirement for explicit and informed consent before data is processed, and ensure that it can be withdrawn at any time.

To ensure companies comply, GDPR also gives data regulators the power to fine up to €20m or 4% of annual global turnover, which is several orders of magnitude larger than previous possible fines. Data breaches must be reported within 72 hours to a data regulator, and affected individuals must be notified unless the data stolen is unreadable, ie strongly encrypted.

Each person in the UK is understood to have about 100 “data relationships” and with many companies sending out multiple reminders, the total number of GDPR emails is expected to soar above one billion by this Friday.

But with GDPR fatigue setting in, and with many messages heading straight into spam boxes, the figures suggest that few people are responding.

Polling by consultancy Accenture has found that more than half of consumers are not responding to emails from brands, with about a third of people deleting the emails almost as soon as they arrive in their inbox.

Some small businesses are reporting that “reconfirmation” rates are averaging just 10%, meaning they are losing 90% of their marketing email lists.

“Up to the deadline you are going to continue to see some panic and mass communications. Then there will be a lull before it begins again, as this is an ongoing requirement,” said Russell Marsh of Accenture. He is forecasting that some companies will return to direct mail to target customers, as it does not fall under the same GDPR legislation.

Many people are enjoying a once in a lifetime opportunity to clear out their inboxes. But while many can be safely ignored, others – such as from the NHS – will need action.

The NHS message reads: “The law is changing and we must get explicit permissions from patients when using their data. To continue to receive SMS text messages, reply START.”

The messages are being sent from the NHS automated appointment reminder system, used by millions of people across the UK. Data rules mean that the messages are sent by each individual NHS trust rather than centrally from the NHS.

Companies are handling the new rules in different ways, as there is no prescribed format for GDPR approval. If a company has a “legitimate interest” in contacting a customer – such as their principal bank account – then it only needs to let the customer know that privacy details have been updated.

But if the email address had been obtained in other ways – such as a pre-ticked box – then that is not regarded as legitimate, and the company has to contact the consumer and obtain approval for further communications. Some companies are insisting users go through the rigmarole of logging in, which might entail trying to remember a password or setting up a new account.

“It will be their interpretation of what they need to do to be compliant,” said Robert Parker at the UK’s Information Commissioner’s Office.

Companies are resorting to ever more desperate ways to catch the eye of users in inboxes deluged with GDPR emails. Many are in the plaintive “Do you still want to hear from us?” style, others warn that “Time is running out”, while some demand “Urgent action required”. Or as one flower delivery company GDPR email says: “Take it or leaf it”.

Warning drinkers of cancer risk could reduce consumption, survey finds

Labels warning drinkers that they risk seven different forms of cancer could make some people re-think their alcohol consumption, according to a survey.

But most people will ignore other warnings on bottles and drinks about the damaging effects of alcohol on health, the survey found.

The annual Global Drugs Survey, which 130,000 people in 44 countries chose to complete online this year, asks about drug and alcohol use, risks and harms. Researchers said that given the success of graphic images on cigarette packets, they wanted to investigate the potential impact of warnings on bottles of wine, beer and spirits among the 3,600 survey responders in England.

They devised seven different health warnings, in collaboration with health experts, from “heart disease is a major cause of death among people with heavy alcohol use” to “a bottle of wine or six bottles of beer contain as many calories as a burger and fries”.

Other warnings concerned liver disease, the increase in violence among drinkers, the increased cancer risk, the recommendation from experts to have at least two alcohol-free days a week and the absence of any health benefits from drinking, even at low levels.

Most people said they believed the messages – nearly 90% believed alcohol could lead to violence and 80% knew there were a lot of calories in alcoholic drinks. And yet most would not rethink the amount they drank if any of those warning labels were on bottles.

The warning that appeared to reach the most people was that “drinking less reduces your risk of seven different sorts of cancer”. Among the 3,600 people in England who responded to the survey, 40% said it would or might affect the amount they drank, 5% said they were unsure and 55% said it would not change anything.

Warnings about calories would or might change the habits of 31% of people and warnings that alcohol increases violent and abusive behaviour would or might make 27% of people cut down.

Drinks manufacturers already have to put the alcohol levels and the chief medical officer’s recommended alcohol limits on their products. A report from the Alcohol Health Alliance in January found that most did not include the up to date guidance of 14 units a week for men and women. They found that none had health warnings featuring specific illnesses or recommending drink-free days.

Professor Adam Winstock, consultant psychiatrist and addiction medicine specialist and founder of the Global Drug Survey said it showed that there was much to do about alcohol messaging in the UK. “It is clear that the link between alcohol consumption and increased cancer risk is a message that is still not reaching UK drinkers and where it does, many chose to react to the message with scepticism.

‘’The alcohol industry which makes profits from selling its product will never embrace anything that might lead to people drinking less. A self-regulated industry will always regulate to optimise profits not public health.’’

Professor Sir Ian Gilmore, chair of the Alcohol Health Alliance, said: “These results on the potential power of health information on alcohol labels are important and compelling. They make it clear that people just do not know about key health issues like the link between alcohol and cancer that might well change their behaviour and improve public health.”

Warning drinkers of cancer risk could reduce consumption, survey finds

Labels warning drinkers that they risk seven different forms of cancer could make some people re-think their alcohol consumption, according to a survey.

But most people will ignore other warnings on bottles and drinks about the damaging effects of alcohol on health, the survey found.

The annual Global Drugs Survey, which 130,000 people in 44 countries chose to complete online this year, asks about drug and alcohol use, risks and harms. Researchers said that given the success of graphic images on cigarette packets, they wanted to investigate the potential impact of warnings on bottles of wine, beer and spirits among the 3,600 survey responders in England.

They devised seven different health warnings, in collaboration with health experts, from “heart disease is a major cause of death among people with heavy alcohol use” to “a bottle of wine or six bottles of beer contain as many calories as a burger and fries”.

Other warnings concerned liver disease, the increase in violence among drinkers, the increased cancer risk, the recommendation from experts to have at least two alcohol-free days a week and the absence of any health benefits from drinking, even at low levels.

Most people said they believed the messages – nearly 90% believed alcohol could lead to violence and 80% knew there were a lot of calories in alcoholic drinks. And yet most would not rethink the amount they drank if any of those warning labels were on bottles.

The warning that appeared to reach the most people was that “drinking less reduces your risk of seven different sorts of cancer”. Among the 3,600 people in England who responded to the survey, 40% said it would or might affect the amount they drank, 5% said they were unsure and 55% said it would not change anything.

Warnings about calories would or might change the habits of 31% of people and warnings that alcohol increases violent and abusive behaviour would or might make 27% of people cut down.

Drinks manufacturers already have to put the alcohol levels and the chief medical officer’s recommended alcohol limits on their products. A report from the Alcohol Health Alliance in January found that most did not include the up to date guidance of 14 units a week for men and women. They found that none had health warnings featuring specific illnesses or recommending drink-free days.

Professor Adam Winstock, consultant psychiatrist and addiction medicine specialist and founder of the Global Drug Survey said it showed that there was much to do about alcohol messaging in the UK. “It is clear that the link between alcohol consumption and increased cancer risk is a message that is still not reaching UK drinkers and where it does, many chose to react to the message with scepticism.

‘’The alcohol industry which makes profits from selling its product will never embrace anything that might lead to people drinking less. A self-regulated industry will always regulate to optimise profits not public health.’’

Professor Sir Ian Gilmore, chair of the Alcohol Health Alliance, said: “These results on the potential power of health information on alcohol labels are important and compelling. They make it clear that people just do not know about key health issues like the link between alcohol and cancer that might well change their behaviour and improve public health.”

Obese couples could be risking health of future children, studies say

Couples who are obese, as well as those who smoke and drink alcohol, could be risking the health of their future children, say experts who are calling for far more awareness of the effects of modern lifestyles on babies in the womb.

A series of three scientific papers in a leading medical journal spell out the consequences of poor diet and lifestyles for the next generation. They urge schools, GPs and nurses to talk to young people and those who may be planning a family about how to be fitter and healthier before they embark on pregnancy.

What happens in the “pre-conception” period can have a profound impact on the growth, development and long-term health of children, they say. Some of the interventions that exist to help pregnant women be healthier are taken up too late. Folic acid helps prevent neural defects, but most women do not start to take it until they have seen a GP to confirm their pregnancy, which can be after a month or two. The crucial time is in the early days and weeks.

Lead author Prof Judith Stephenson of University College London said: “The key message is to act earlier, before conception. The idea that there are things you can do before the pregnancy that will affect the health of the baby is not always grasped.

“The general view of most women is, ‘Once I’m pregnant I will go and see the GP and things will get going from there.’”

But she said the scientists did not want to distress parents who might have been overweight when they had their children. “All the evidence points to early events being very influential in later life, but you are not doomed at that stage,” she said. “Things you do throughout childhood and adolescence also have a powerful influence on future health.”

The global series of three papers in the Lancet also highlights the risks of undernourished girls in the developing world having stunted babies with poor cognitive development. It is a very serious problem that needs to be better tackled, but obesity is now more widespread. “In many low, middle, and high-income countries, up to 50% of women are overweight or obese when they become pregnant,” say the experts.

“In high-income countries, adolescents have the poorest diets of any age group … it is a crucial period for establishing long-term health risk.”

Obesity, they say, is associated with increased risk of most major adverse outcomes for pregnant women and their babies. It can make it hard to conceive and complicate pregnancy – women are at risk of high blood pressure, called pre-eclampsia, for instance. It increases the chances of birth defects, stillbirth, low-weight babies, unsuccessful breastfeeding and even the death of the mother.

The issues are not just with the weight of the mother. Obesity in the father has been linked to impaired fertility and an increased risk of chronic disease in the child.

Couples are already advised to stop smoking and drinking when a woman is pregnant. Now they should be counselled about their nutrition and losing weight as well. One of the best opportunities to intervene is when a woman visits a nurse or a family planning clinic to have a contraceptive implant or coil removed. But GPs could also ask whether couples are considering having a family during any other routine visit.

There is a window of opportunity to get the healthy message across when couples are thinking of having a child, said Stephenson. “Couples are very motivated around this time,” she said. In one pilot study, a researcher suggested to obese women planning to get pregnant that they lose a lot of weight first. “Two-thirds gave it a go and a third completed it,” she said.

Couples need support, however. “It is usually not enough to simply educate or give advice, as knowing something is good for you is rarely sufficient to change behaviour,” says one of the papers.

The Royal College of Obstetricians and Gynaecologists said it was very concerned that 96% of women of reproductive age had low levels of iron and folic acid. “This is yet another piece of evidence adding to the overwhelming need for the government to add folic acid to flour,” said Prof Janice Rymer, vice-president. “This simple measure will reach women most at risk in our society who have poor dietary and socioeconomic status, as well as those women who may not have planned their pregnancy.”

The college also supported the call for education about health and fitness prior to having children. “Education from an early age – ideally from adolescence – about the need to maintain a healthy diet and weight will not only improve the health of individuals, but also the health and quality of life of future generations,” Rymer said.

‘I could be taken from my home’: why disabled people once again fear being ‘warehoused’

‘I fear for my life,” Lucy Watts, 24, tells me from her family bungalow in Benfleet, Essex. Watts has a range of severe health problems – muscle weakness around her lungs; kidney and stomach problems; and dysfunction of the nervous system. Osteoporosis, degenerative disease in her spine and a progressive muscle disease mean she uses a wheelchair. She is hooked up to intravenous drips as we talk. But it isn’t Watts’s health that is causing her to fear for her life. It is the government’s care cuts.

Since 2009, when her condition first deteriorated, Watts has lived comfortably at home with her mum, Kate, and sister, Vicky, with the aid of a complex care package: at first some social care delivered through her local authority, and then a more comprehensive arrangement funded by the NHS’s Continuing Healthcare scheme. Over the years, even with a care plan in place, Watts’s mum has been left to take up much of the slack, sometimes finishing work at 4pm, coming home, handling IVs and medical care until 11pm, then sleeping on a mattress on the floor next to her daughter’s bed.

The jigsaw of support has enabled Watts to make remarkable achievements: being an ambassador for several charities, sitting on medical boards, gaining an MBE in 2016 for services for young people with disabilities. But in 2015, Watts’s mum developed a brain tumour. While Kate was in hospital, Watts would be without the care she needed at home.

Watts turned to her clinical commissioning group (CCG), the local NHS body responsible for healthcare provision, in the hope she would be given a full care package to cover her mum’s recovery period. Instead, she was given another solution: Watts would be placed in a nursing home. “They told us the only two that would provisionally take me were an elderly nursing home or a learning disability home,” she recalls. When she pressed further, she says she was told that once in the home, she would be unable to go out – not even to visit her mum in hospital or to go to her own vital medical appointments.

After Watts threatened to bring legal action, she says the CCG backtracked and agreed a 24-hour care package. Castle Point and Rochford CCG says it is unable to discuss individual cases, but that its priority is to provide “high-quality care packages that are safe, clinically appropriate and meet people’s needs”, and that “depending on individual situations, different options could be suitable, including support at home and the opportunity to have a personalised health budget”. But Watts still feels as if the CCG is “desperate to get me in a home” because her independence is “too costly”. “At times, I’ve been made to feel unworthy of being alive,” she says.

Watts’s case is shocking but it is far from rare. As deep cuts to social care and NHS care set in, the Equality and Human Rights Commission (EHRC) warned last year that disabled people across the country face being “interned” in care homes due to cost-cutting measures. A dozen NHS organisations are facing legal action over what the EHRC calls “discriminatory” policies around pushing disabled people into residential care. Continuing healthcare of the kind that Watts relies on can be arranged in a care home, nursing home, hospice or a person’s own home. But new funding caps, which have already been rolled out in at least 44 CCGs across the UK, mean that many disabled people may now be prevented from living at home with their families despite being well enough to do so. As Watts puts it: “I’d be taken from my home and stripped of my life.”

As recently as the 1970s and 80s, disabled people in Britain were routinely put in out-of-town institutions – “warehoused”, as it was known – as a way to reduce the costs of providing support. Over the past 40 years, disabled campaigners have fought for the basic right to independent living. Against longstanding prejudice that treats disabled people as children to be cared for or dehumanises us as objects to be put away, the independent living movement fought for disabled people to be seen as ordinary adults, with the same right to fundamental freedoms as anyone else. But as austerity measures kicked in, this progress has been increasingly under threat.

“These cuts are rolling the right to independent living back years,” says Linda Burnip, the co-founder of the campaign group Disabled People Against Cuts. “DPAC is being inundated with cases where disabled people are losing the right to live independently or having care packages slashed.”

Jean Almond at home in St Helens with her husband Geoffrey.


Jean Almond at home in St Helens with her husband Geoffrey. Photograph: Christopher Thomond for the Guardian

Jean Almond remembers vividly her brief time in a care home. “It virtually killed me,” she says. Almond, 66, has multiple sclerosis and is quadriplegic, and is supported at her home in St Helens by a rotating team of five personal assistants. Her husband, Geoffrey, fills in the gaps, helping her during the four nights a week that her care package doesn’t provide an assistant.

When her husband went to a week-long conference in 2005 and she needed replacement care, Almond hoped that staying in a care home would be a decent solution. But, at just 53, she was told her only option was a nursing home for the elderly. Once there, she underwent an ordeal she can’t forget. Staff gave her the wrong medication – doubling some doses and skipping others – leaving her “out of it” and bleeding on the floor. She says she was given a suppository without her consent because all the residents had one – “They called it ‘bowel-opening day’” – while no one was given help to shower all week. The home has since been investigated and several staff members dismissed.

While good residential care does exist, there are also repeated reports of abuse, most infamously with the Winterbourne scandal in 2012 – last week a survey by University College London found that abuse is taking place in 99% of care homes due to chronic underfunding.

More than a decade after Almond’s stay, with care cuts hitting the news, she and her husband are “worried to death” over her care package. Geoffrey is now 70 – “Age is creeping on,” he says – and Almond is anxious that as her needs increase with age, and her husband’s ability to physically support her decreases, she will be forced out of her own home. “I live in fear of being returned to a care home,” she says. “I’ve still got all my faculties … and it’s worse like that, isn’t it? I’d rather die.”

Fear seems to go hand in hand with care packages in this climate. I spoke to several people who had been told they would have to move to a care home, while disability organisations told me of people who were afraid to speak out in case their CCG or local council punished them by cutting their care hours. Dan Burden of the Spinal Injuries Association says the organisation is now hearing of people with spinal cord injuries “being threatened with institutions” rather than receiving care at home with their families. “People are scared to go on the record, worried that the situation will get worse for them if they speak out.”

The same cost-cutting that has CCGs pushing some disabled people into residential care is also severely reducing the care packages that for years have enabled others to live at home. On paper, these disabled people are still afforded independent living but in reality the care is becoming so threadbare that it is barely meeting their most basic needs. Lorraine Howard, 47, has recently been told her care package will be gutted. For 24 years, Howard, who has the severe muscle condition spinal muscular atrophy type 2 and uses a wheelchair, had a 24/7 care package funded largely by the Independent Living Fund (ILF) – a standalone pot of money that supported 18,000 severely disabled people. But in 2015, the coalition government abolished the fund and transferred responsibility to cash-strapped local councils.

From 24-hour care to ‘almost nothing’: Lorraine Howard in Coventry.


From 24-hour care to ‘almost nothing’: Lorraine Howard in Coventry. Photograph: John Robertson for the Guardian

Howard’s life has until now been a well-oiled machine. She has a team of four personal assistants, one of whom has been with her for 12 years – “They know exactly how to care for me … we’re like a little family” – and this has enabled her not only to stay well but to make a home in Coventry with her husband, Howard, and raise a daughter, Kiah.

But like other former ILF users across the country, in February 2017 Howard was reassessed for her care package by her local council. Two weeks later, she received a phone call informing her that it was “cutting her care considerably”: she would lose her night care completely and be left with three and a half hours a day to go to the toilet, wash, eat and drink. She would get one shower a week, and 10 hours out of the house. “How can someone who has needed 24-hour care all their life go to almost nothing?” she asks. “My care needs haven’t suddenly got better just because the government needs to save money.”

This type of gutted care package is worryingly common. More than a million disabled people are now living without the care they need, according to the charity Leonard Cheshire Disability, with reports of people with serious health conditions waiting 14 hours to go to the toilet or left to sleep in their clothes. Campaigners fear that cut care packages such as Howard’s represent a “drip, drip” assault on independent living, where councils or CCGs do not technically force disabled people out of their homes but reduce at-home support to such a degree that they have no choice but to accept a place in a care home.

Howard has appealed against the decision and her care package is now being reviewed by a panel at the council. “A panel that has never met me,” she adds. Coventry city council says Howard’s care package is still going through an assessment process and it will “manage any subsequent transition arrangements as professionally and sympathetically as we can”. In the meantime, Howard tells me her social worker has asked her if she would consider sleeping in a hospital bed (so big it would be in a separate room) to save on night care, and even wearing adult nappies despite the fact she isn’t incontinent. “It’s humiliating,” she says. “I am an adult woman with a husband.”

The prospect of losing her 24/7 care has led Howard to have suicidal thoughts and she has seen her GP for depression. “I’m normally a very happy, confident, outgoing person. This government is slowly killing me.”

In Benfleet, Watts’s mum is recovering well but Watts is still battling over her care package. As things stand, she says, it feels like it’s her life “but on someone else’s terms”. Despite her optimism, Watts admits she is still worried about the future. “They could so easily place me in a nursing home,” she says. “I’m very scared, frightened. Petrified even.”

‘I could be taken from my home’: why disabled people once again fear being ‘warehoused’

‘I fear for my life,” Lucy Watts, 24, tells me from her family bungalow in Benfleet, Essex. Watts has a range of severe health problems – muscle weakness around her lungs; kidney and stomach problems; and dysfunction of the nervous system. Osteoporosis, degenerative disease in her spine and a progressive muscle disease mean she uses a wheelchair. She is hooked up to intravenous drips as we talk. But it isn’t Watts’s health that is causing her to fear for her life. It is the government’s care cuts.

Since 2009, when her condition first deteriorated, Watts has lived comfortably at home with her mum, Kate, and sister, Vicky, with the aid of a complex care package: at first some social care delivered through her local authority, and then a more comprehensive arrangement funded by the NHS’s Continuing Healthcare scheme. Over the years, even with a care plan in place, Watts’s mum has been left to take up much of the slack, sometimes finishing work at 4pm, coming home, handling IVs and medical care until 11pm, then sleeping on a mattress on the floor next to her daughter’s bed.

The jigsaw of support has enabled Watts to make remarkable achievements: being an ambassador for several charities, sitting on medical boards, gaining an MBE in 2016 for services for young people with disabilities. But in 2015, Watts’s mum developed a brain tumour. While Kate was in hospital, Watts would be without the care she needed at home.

Watts turned to her clinical commissioning group (CCG), the local NHS body responsible for healthcare provision, in the hope she would be given a full care package to cover her mum’s recovery period. Instead, she was given another solution: Watts would be placed in a nursing home. “They told us the only two that would provisionally take me were an elderly nursing home or a learning disability home,” she recalls. When she pressed further, she says she was told that once in the home, she would be unable to go out – not even to visit her mum in hospital or to go to her own vital medical appointments.

After Watts threatened to bring legal action, she says the CCG backtracked and agreed a 24-hour care package. Castle Point and Rochford CCG says it is unable to discuss individual cases, but that its priority is to provide “high-quality care packages that are safe, clinically appropriate and meet people’s needs”, and that “depending on individual situations, different options could be suitable, including support at home and the opportunity to have a personalised health budget”. But Watts still feels as if the CCG is “desperate to get me in a home” because her independence is “too costly”. “At times, I’ve been made to feel unworthy of being alive,” she says.

Watts’s case is shocking but it is far from rare. As deep cuts to social care and NHS care set in, the Equality and Human Rights Commission (EHRC) warned last year that disabled people across the country face being “interned” in care homes due to cost-cutting measures. A dozen NHS organisations are facing legal action over what the EHRC calls “discriminatory” policies around pushing disabled people into residential care. Continuing healthcare of the kind that Watts relies on can be arranged in a care home, nursing home, hospice or a person’s own home. But new funding caps, which have already been rolled out in at least 44 CCGs across the UK, mean that many disabled people may now be prevented from living at home with their families despite being well enough to do so. As Watts puts it: “I’d be taken from my home and stripped of my life.”

As recently as the 1970s and 80s, disabled people in Britain were routinely put in out-of-town institutions – “warehoused”, as it was known – as a way to reduce the costs of providing support. Over the past 40 years, disabled campaigners have fought for the basic right to independent living. Against longstanding prejudice that treats disabled people as children to be cared for or dehumanises us as objects to be put away, the independent living movement fought for disabled people to be seen as ordinary adults, with the same right to fundamental freedoms as anyone else. But as austerity measures kicked in, this progress has been increasingly under threat.

“These cuts are rolling the right to independent living back years,” says Linda Burnip, the co-founder of the campaign group Disabled People Against Cuts. “DPAC is being inundated with cases where disabled people are losing the right to live independently or having care packages slashed.”

Jean Almond at home in St Helens with her husband Geoffrey.


Jean Almond at home in St Helens with her husband Geoffrey. Photograph: Christopher Thomond for the Guardian

Jean Almond remembers vividly her brief time in a care home. “It virtually killed me,” she says. Almond, 66, has multiple sclerosis and is quadriplegic, and is supported at her home in St Helens by a rotating team of five personal assistants. Her husband, Geoffrey, fills in the gaps, helping her during the four nights a week that her care package doesn’t provide an assistant.

When her husband went to a week-long conference in 2005 and she needed replacement care, Almond hoped that staying in a care home would be a decent solution. But, at just 53, she was told her only option was a nursing home for the elderly. Once there, she underwent an ordeal she can’t forget. Staff gave her the wrong medication – doubling some doses and skipping others – leaving her “out of it” and bleeding on the floor. She says she was given a suppository without her consent because all the residents had one – “They called it ‘bowel-opening day’” – while no one was given help to shower all week. The home has since been investigated and several staff members dismissed.

While good residential care does exist, there are also repeated reports of abuse, most infamously with the Winterbourne scandal in 2012 – last week a survey by University College London found that abuse is taking place in 99% of care homes due to chronic underfunding.

More than a decade after Almond’s stay, with care cuts hitting the news, she and her husband are “worried to death” over her care package. Geoffrey is now 70 – “Age is creeping on,” he says – and Almond is anxious that as her needs increase with age, and her husband’s ability to physically support her decreases, she will be forced out of her own home. “I live in fear of being returned to a care home,” she says. “I’ve still got all my faculties … and it’s worse like that, isn’t it? I’d rather die.”

Fear seems to go hand in hand with care packages in this climate. I spoke to several people who had been told they would have to move to a care home, while disability organisations told me of people who were afraid to speak out in case their CCG or local council punished them by cutting their care hours. Dan Burden of the Spinal Injuries Association says the organisation is now hearing of people with spinal cord injuries “being threatened with institutions” rather than receiving care at home with their families. “People are scared to go on the record, worried that the situation will get worse for them if they speak out.”

The same cost-cutting that has CCGs pushing some disabled people into residential care is also severely reducing the care packages that for years have enabled others to live at home. On paper, these disabled people are still afforded independent living but in reality the care is becoming so threadbare that it is barely meeting their most basic needs. Lorraine Howard, 47, has recently been told her care package will be gutted. For 24 years, Howard, who has the severe muscle condition spinal muscular atrophy type 2 and uses a wheelchair, had a 24/7 care package funded largely by the Independent Living Fund (ILF) – a standalone pot of money that supported 18,000 severely disabled people. But in 2015, the coalition government abolished the fund and transferred responsibility to cash-strapped local councils.

From 24-hour care to ‘almost nothing’: Lorraine Howard in Coventry.


From 24-hour care to ‘almost nothing’: Lorraine Howard in Coventry. Photograph: John Robertson for the Guardian

Howard’s life has until now been a well-oiled machine. She has a team of four personal assistants, one of whom has been with her for 12 years – “They know exactly how to care for me … we’re like a little family” – and this has enabled her not only to stay well but to make a home in Coventry with her husband, Howard, and raise a daughter, Kiah.

But like other former ILF users across the country, in February 2017 Howard was reassessed for her care package by her local council. Two weeks later, she received a phone call informing her that it was “cutting her care considerably”: she would lose her night care completely and be left with three and a half hours a day to go to the toilet, wash, eat and drink. She would get one shower a week, and 10 hours out of the house. “How can someone who has needed 24-hour care all their life go to almost nothing?” she asks. “My care needs haven’t suddenly got better just because the government needs to save money.”

This type of gutted care package is worryingly common. More than a million disabled people are now living without the care they need, according to the charity Leonard Cheshire Disability, with reports of people with serious health conditions waiting 14 hours to go to the toilet or left to sleep in their clothes. Campaigners fear that cut care packages such as Howard’s represent a “drip, drip” assault on independent living, where councils or CCGs do not technically force disabled people out of their homes but reduce at-home support to such a degree that they have no choice but to accept a place in a care home.

Howard has appealed against the decision and her care package is now being reviewed by a panel at the council. “A panel that has never met me,” she adds. Coventry city council says Howard’s care package is still going through an assessment process and it will “manage any subsequent transition arrangements as professionally and sympathetically as we can”. In the meantime, Howard tells me her social worker has asked her if she would consider sleeping in a hospital bed (so big it would be in a separate room) to save on night care, and even wearing adult nappies despite the fact she isn’t incontinent. “It’s humiliating,” she says. “I am an adult woman with a husband.”

The prospect of losing her 24/7 care has led Howard to have suicidal thoughts and she has seen her GP for depression. “I’m normally a very happy, confident, outgoing person. This government is slowly killing me.”

In Benfleet, Watts’s mum is recovering well but Watts is still battling over her care package. As things stand, she says, it feels like it’s her life “but on someone else’s terms”. Despite her optimism, Watts admits she is still worried about the future. “They could so easily place me in a nursing home,” she says. “I’m very scared, frightened. Petrified even.”

Inside fertility clinics a thousand dreams could just melt away | Eva Wiseman

I’ve been waiting for this. I’ve been waiting for a fertility clinic to accidentally defrost its embryos ever since I was invited to see one London egg bank’s storage tanks, and said, out loud to the nurse: “Surely not?”

On 4 March, two tanks at two fertility clinics in America malfunctioned. At the clinic in Cleveland an alarm sounded to indicate low liquid nitrogen levels, but nobody heard. At the clinic in San Francisco (where patients pay $ 600 a year for storage alone, with many encouraged to do so by packages offered by their employers in tech, Facebook and Apple), an embryologist noticed low levels during a check, so quickly moved the eggs and embryos, stacked invisibly in fine, long straws, a little like the ones you can buy at the fair with sherbet in, to another tank. The clinics are yet to discover whether any have been damaged.

Across the US, hundreds of people are waiting to find out if their plans for a family have melted, too, if their investments, both soul and cash, have been squandered.

“It’s really quite sad the samples weren’t split up,” one expert said, discussing the clinics’ common method of filing patients’ embryos together, rather than across different tanks. “They were literally putting all the eggs in one basket.” On the news, the malfunctions were described in the language of earthquakes, or flood – a “fertility disaster”.


What tank is capable of containing not just one hope, not just one person’s 20-year plan, but hundreds of them?

“Surely not?” I said, looking around at the tanks that were kicking about at our feet, these small metal barrels, hairy with wires. In London, it was a supply cupboard, of the sort traditionally used to store buckets for accidents, or reams of toilet paper, or perhaps pens. And there were some of these things here, too, alongside the eggs, shelves of binders, a system, but it was the casualness of the place, like a backstage afterthought, that shocked me into a fantasy of catastrophe.

By that point I’d spoken to many of the women who had saved small fortunes, taken the drugs, dealt with the hormones, sat down and plotted their lives on paper like a “choose your own adventure” story, succumbed to the egg harvesting “procedure” and its series of mild perils, in order to purchase a home to freeze their distant hopes in these metal tanks, on this cupboard floor. And the risks, as they stood, were defined starkly. The biggest risk reported was that it might not work. That this whole thing was so new that only a tiny proportion of women had unfrozen and implanted their eggs, and gone on to have a healthy child. Still, with this knowledge, more and more people (people with the cash, as well as the hunger) were choosing to take that risk.

But the other risks, the ones that clinicians are not trained to debate, these conversations being above most doctors’ pay grade, are complex and answerless. There is the risk that, even after planning for a family so meticulously that you willingly inject yourself daily with hormones, and splay your legs monthly for a dildocam broadcasting to a room of strangers, you will end up alone. Some people will surely relish that independence, and feel comfortable buying donor sperm and bringing a kid up alone; most prefer someone to parent with, and this is one of the unsayable risks that also kicks about in these fertility clinics. The risk that hetero dating culture will continue to insist on a degree of dishonesty, so chucking all responsibility for fertility into the hands (and wallet) of the woman, meaning the only plan she is really able to make becomes a painful plan to pay to delay.

And then there is this – the risk that even after all those concerns have been considered and annotated, the facilities themselves are flawed. Of course they are. What tank, really, is capable of containing not just one hope, not just one person’s 20-year plan, of birthday cakes and grazed knees and the profundity of being needed, but hundreds of them, in long sherbet straws?

Standing in that room I was inside a metaphor. Every tank contained a thousand conversations, about desire and lack, and frozen expectations of what a life should look like. Every tank contained not just the promise of a return on these women’s wobbly investments, the price of a small car in which they could have escaped, but the promise of change – of being rescued from uncertainty, the promise of a life like their parents’, the promise of sleeplessness, debt, fear, love, the promise of adulthood, grief, someone to hold in the night. The promise that the life these women had pictured for themselves would one day open for them like a pop-up book, and into it they’d gratefully fall, because this is what people do, right, and because these women, too, are people. Then, in their clinic, the beep of an alarm echoing impotently, the tanks’ contents started to melt, that unheard alarm a reminder of how new this is, how new we are, how many questions they have left to answer. Including, “What now?” What the hell now?

Email Eva at e.wiseman@observer.co.ukor follow her on Twitter @EvaWiseman

Four in 10 cancer cases could be prevented by lifestyle changes

Almost four in 10 cancer cases in the UK could be prevented if British people changed their lifestyles by drinking less alcohol, keeping their weight down, ditching cigarettes and avoiding overdoing it on a sunbed, among other actions, research has revealed.

New figures from Cancer Research UK (CRUK) show that more than 2,500 cancer cases a week are avoidable, with exposure to tobacco smoke the leading factor, accounting for just over 15% of cancer cases.

“Lung cancer contributes well over half of those smoking-related cases, but there are also thousands of cancers of smoking-related bladder, oesophageal and bowel cancers every year to name just a few,” said Dr Katrina Brown, lead author of the study at CRUK.

While the researchers say that smoking rates in the UK are falling by about 1% a year, they flagged growing concerns about the nation’s expanding waistline, with excess weight the second leading preventable cause of cancer, accounting for 6.3% of cancer cases.

The team said they hoped the government would learn from the success of measures such as advertising restrictions, tobacco taxes and standardised packaging in cutting smoking rates, and called for a 9pm watershed for junk food adverts and for food manufacturers to come up with new recipes to reduce salt, sugar and fat in products.

However, the team said a shift in public attitudes was also necessary, warning that obesity had the potential to become “the new smoking”.

“People regard being large as increasingly normal, and that is a shift in social norms and acceptability,” said Prof Linda Bauld, who works on behavioural research for cancer prevention at CRUK. “We need to get back down to what is the normal while recognising the challenges individuals face.”

While a recent campaign by CRUK highlighting the link between obesity and cancer was met with anger by some who accused the charity of fat-shaming, Bauld said the charity had a duty to increase awareness, noting that just 15% of adults in the UK recognised the connection between obesity and cancer.

The team say that while cancer survival is improving, the rate of new cancer cases in the UK has risen by 7% over the past decade, after taking into account the ageing population and population growth, and is expected to continue to increase by about 2% every year, making prevention important.

The new research, published in the British Journal of Cancer, is based on a number of sources, including national surveys, cancer registries and analyses of data from scientific papers.

The results reveal that drinking alcohol, having a low-fibre diet and infections such as HPV each account for just over 3% of cancer cases, with exposure to substances at work, such as asbestos, and UV radiation each causing almost 4% of cancer cases. Air pollution, eating processed meat, not breastfeeding and exposure to radiation such as radon gas each accounted for less than 2% of cancer cases. The figures took into account overlap between the different aspects of lifestyle, and only included definite causes of cancers. “What we are talking about here is at the population level: what we can’t do is say for any individual person what their risk is,” said Sir Harpal Kumar, chief executive for CRUK. “We can’t for example say if you don’t smoke you won’t get cancer, neither can we say if you do smoke you will get cancer, because these things are affected by other factors.”

The team note that the proportion of preventable cases of cancer varies between the four nations within the UK, with 41.5% of cancers avoidable in Scotland, compared to 37.3% in England – a difference Brown put down to socioeconomic factors affecting lifestyles.

Overall the proportion of avoidable cancer cases was slightly higher in men than women, probably due to higher levels of lifestyle factors such as smoking in men. However, some, such as excess weight and alcohol, were responsible for a greater proportion of cancers for women – probably because the cancers involved primarily affect women.

The percentage of cancer cases attributed to excess body weight, 6.3%, had risen from 5% as calculated in the charity’s previous report on the topic in 2011, a change that researchers say is down an increase in obesity and a rise in the number of types of cancer known to be linked to being overweight or obese. Excess weight is now linked to 13 cancers, among them cancer of the breast, kidney, bowel and womb.

The study had some limitations, including that survey data based on self-reports can be prone to error and that some of the data used was several years old.

But Kumar said action was vital: “A lot of these behaviours start quite early, and that is where we need to think about addressing them.”

Four in 10 cancer cases could be prevented by lifestyle changes

Almost four in 10 cancer cases in the UK could be prevented if British people changed their lifestyles by drinking less alcohol, keeping their weight down, ditching cigarettes and avoiding overdoing it on a sunbed, among other actions, research has revealed.

New figures from Cancer Research UK (CRUK) show that more than 2,500 cancer cases a week are avoidable, with exposure to tobacco smoke the leading factor, accounting for just over 15% of cancer cases.

“Lung cancer contributes well over half of those smoking-related cases, but there are also thousands of cancers of smoking-related bladder, oesophageal and bowel cancers every year to name just a few,” said Dr Katrina Brown, lead author of the study at CRUK.

While the researchers say that smoking rates in the UK are falling by about 1% a year, they flagged growing concerns about the nation’s expanding waistline, with excess weight the second leading preventable cause of cancer, accounting for 6.3% of cancer cases.

The team said they hoped the government would learn from the success of measures such as advertising restrictions, tobacco taxes and standardised packaging in cutting smoking rates, and called for a 9pm watershed for junk food adverts and for food manufacturers to come up with new recipes to reduce salt, sugar and fat in products.

However, the team said a shift in public attitudes was also necessary, warning that obesity had the potential to become “the new smoking”.

“People regard being large as increasingly normal, and that is a shift in social norms and acceptability,” said Prof Linda Bauld, who works on behavioural research for cancer prevention at CRUK. “We need to get back down to what is the normal while recognising the challenges individuals face.”

While a recent campaign by CRUK highlighting the link between obesity and cancer was met with anger by some who accused the charity of fat-shaming, Bauld said the charity had a duty to increase awareness, noting that just 15% of adults in the UK recognised the connection between obesity and cancer.

The team say that while cancer survival is improving, the rate of new cancer cases in the UK has risen by 7% over the past decade, after taking into account the ageing population and population growth, and is expected to continue to increase by about 2% every year, making prevention important.

The new research, published in the British Journal of Cancer, is based on a number of sources, including national surveys, cancer registries and analyses of data from scientific papers.

The results reveal that drinking alcohol, having a low-fibre diet and infections such as HPV each account for just over 3% of cancer cases, with exposure to substances at work, such as asbestos, and UV radiation each causing almost 4% of cancer cases. Air pollution, eating processed meat, not breastfeeding and exposure to radiation such as radon gas each accounted for less than 2% of cancer cases. The figures took into account overlap between the different aspects of lifestyle, and only included definite causes of cancers. “What we are talking about here is at the population level: what we can’t do is say for any individual person what their risk is,” said Sir Harpal Kumar, chief executive for CRUK. “We can’t for example say if you don’t smoke you won’t get cancer, neither can we say if you do smoke you will get cancer, because these things are affected by other factors.”

The team note that the proportion of preventable cases of cancer varies between the four nations within the UK, with 41.5% of cancers avoidable in Scotland, compared to 37.3% in England – a difference Brown put down to socioeconomic factors affecting lifestyles.

Overall the proportion of avoidable cancer cases was slightly higher in men than women, probably due to higher levels of lifestyle factors such as smoking in men. However, some, such as excess weight and alcohol, were responsible for a greater proportion of cancers for women – probably because the cancers involved primarily affect women.

The percentage of cancer cases attributed to excess body weight, 6.3%, had risen from 5% as calculated in the charity’s previous report on the topic in 2011, a change that researchers say is down an increase in obesity and a rise in the number of types of cancer known to be linked to being overweight or obese. Excess weight is now linked to 13 cancers, among them cancer of the breast, kidney, bowel and womb.

The study had some limitations, including that survey data based on self-reports can be prone to error and that some of the data used was several years old.

But Kumar said action was vital: “A lot of these behaviours start quite early, and that is where we need to think about addressing them.”