Bereaved families bring case against government over prisoner suicides

Relatives of prisoners at HMP Woodhill who have taken their own lives are to bring a legal challenge against the institution’s governor and the justice secretary for allegedly failing to introduce basic safety measures. Eighteen prisoners have killed themselves at the jail in Milton Keynes since early 2013 despite repeated recommendations and guidance from coroners’ reports and official bodies that investigate deaths in custody.

The most recent death at Woodhill was before Christmas, shortly after the high court granted permission for the case to be heard. Deaths in custody reached a record high in England and Wales last year. In 2016, there were 119 self-inflicted deaths; the previous year there were 89.

The action has been brought by Pearl Scarfe and Julie Barber, the mother and sister of Ian Brown, who took his life in his cell in Woodhill on 19 July 2015, and Jamie Blyde, the brother of Daniel Dunkley, who died on 2 August 2016, four days after he was found hanging in his cell.

The families are seeking to persuade the court to order that the governor of Woodhill prison and the justice secretary, Liz Truss, take urgent action to reduce the risk of self-inflicted deaths in the future. Woodhill had the highest suicide rate of any prison in 2016; seven prisoners killed themselves there last year.

Barber said: “Ian was much loved. Our loss has been unimaginable. We all miss him every day. I believe if he’d had the help and support he needed he’d still be here. Every time I hear about another death in the prison, I think: ‘Why?’

“If lessons had been learned when my brother died, all those families would not have had to go through what we have had to go through. It’s hard for us to hear about more deaths. It makes me angry that suicides have happened that could have been prevented if changes had been put in place, as they should have been.”

The judicial review, to be heard at the Royal Courts of Justice in central London, is being supported by Inquest, the organisation that helps relatives at coroners’ courts. Inquest says it is concerned about the lack of a national oversight mechanism to monitor, audit and follow up actions taken in response to recommendations by the Prisons and Probation Ombudsman and coroners.

Deborah Coles, the director of Inquest, said: “The number of self-inflicted deaths occurring in prisons in England and Wales is currently at record levels. It is therefore more vital than ever that preventative actions are identified, changes implemented, and sustained improvements enforced to prevent future deaths.

“The current system for learning lessons and implementing changes arising from deaths in custody is not fit for purpose; it does not adequately prevent future deaths, meet the hopes and needs of bereaved families, or satisfy the wider public interest.

“The deplorable situation at HMP Woodhill is just one stark example of a much wider national problem. Deaths occur time and again as a result of repeated failings. Families are told that lessons will be learned, but nothing changes. The reality is that the Ministry of Justice has wholly failed to address the unacceptable rise in self-inflicted deaths.”

Jo Eggleton, a solicitor at the law firm Deighton Pierce Glynn, who represents the families of Brown and Dunkley, said: “[They] have shown great strength in bringing this claim. Despite the awful ordeal they have been through, they have put themselves on the line to try and protect others and prevent future deaths.

“They and the other families of men who have died at Woodhill that I represent share this common goal and have worked together to try and make it possible. They should be recognised and applauded for that. It’s just a shame that this claim has had to be brought at all.”

In a letter to Truss last week, the Labour MP Harriet Harman, the chair of parliament’s joint committee on human rights, called for a national oversight mechanism “with a duty to collate, analyse and monitor learning outcomes and their implementation arising out of deaths in prisons”.

In the UK, the Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Hotline is 1-800-273-8255. In Australia, the crisis support service Lifeline is on 13 11 14.

Bereaved families bring case against government over prisoner suicides

What does Labour"s school meals policy mean for families, teachers and politicians?

Jeremy Corbyn’s announcement of a £1bn plan to introduce a VAT tax on private schools to pay for free school meals for all primary children has divided opinion.

The Labour policy was greeted warmly by many health, welfare and education experts, while others pointed to potential pitfalls in its logic. Politically, it seems the Labour leader may be on to a winner, but how has the plan been greeted by families, teachers and politicians?

Families

The extension of free meals to all primary school pupils would certainly boost attempts to tackle poverty, lifting thousands of children above the breadline, providing financial respite for hard-pressed parents and removing the social stigma endured by many pupils who qualify already.

An estimated 1.2 million children in England living below the poverty line missed out on free school meals in 2013, according to research by the Children’s Society. Half of these were simply not entitled to support under eligibility rules that restricted entitlement to pupils whose parents were unemployed or earning less than £16,200.

The impact of this eligibility “cliff edge” can be dramatic: while 70% of children on free school meals ate a school canteen lunch regularly, take-up slumps to 20% among the children of poorer parents who are in work, suggesting many parents struggle to meet the £450 annual cost per child.

The coalition’s introduction in 2014 of universal free school meals to all children in the first three years of primary school meant an estimated 200,000 children in poor working families qualified for a free lunch. Extending eligibility to all would help even more of the offspring of the “just about managing”.

Interestingly, about 700,000 families who were eligible for free school meals did not claim them, the Children’s Society estimated. This was possibly because of the stigma attached, especially in schools where children who took up the benefit were segregated in separate lunch queues or required to pay with special tokens.

Universalising free school meals will always raise objections among those who believe it is a poor use of public money. Supporters say richer pupils are not expected to pay for books so why are they for school food? Patrick Butler

Children’s health

Anti-obesity campaigners and experts are clear: free school meals are a weapon in the war against ill health. Whether they are from affluent or hard-up families, many children eat packed lunches that are full of saturated fat and sugar, comprising crisps and cake, chocolate bars and cola.

School lunches, however, have to meet government nutritional standards, including one portion of fruit and one of vegetables every day, a dessert containing 50% fruit at least twice a week and a variety of fruit and vegetables – three different types of each in a week.

Other healthy foods must also be on the menu, such as oily fish at least once every three weeks, wholegrain varieties of starchy food once a week and water, low-fat milk and limited amounts of fruit juice to drink.

There are problems, though, that the new policy would have to address. Children already entitled to free school meals do not always get them. There are forms to fill in, which parents may find difficult if English is not their first language, and there are cultural barriers to signing up. Teachers may be charged with following up those who are eligible, but may be short of time. Sarah Boseley

Teachers

The announcement will be met with mixed reactions from the private and state school sector.

Private schools justify their exemption from VAT and other tax breaks by offering scholarships and bursaries to children from disadvantaged backgrounds, and by partnering with state schools to share facilities and teachers. They claim the imposition of a tax would force some independent schools to close, putting pupils back into the already stretched state system.

According to experts, one in five households with privately educated children earn less than £50,000 a year, suggesting some may struggle to meet a 20% price hike. But only 7% of the UK’s schoolchildren are educated privately – one in five of that number is not very high.

Private school fees have also been increasing at a faster rate than inflation, reaching an average cost of £16,119 a year. For boarding schools it’s over £30,000.Some argue middle class parents are already being priced out.

Others, including former Ofsted chief Sir Michael Wilshaw, support the VAT but say the money raised could be better spent because the most disadvantaged children already receive free school meals. Labour and the teachers’ union say at a time when more families are affected by cuts to benefits, and in-work poverty is soaring, the cost of school lunches can be prohibitive.

Were Labour to roll out a universal policy, they would also have to create a benchmark to measure the performance of the most disadvantaged pupils, as free school meals status is used to identify students that require assistance. Nadia Khomami

Politics

Universal free school meals, paid by higher taxes on free schools, has major political advantages as a policy for Labour. First, it’s catchy and easy to understand, crucial for any policy to have cut-through with voters.

Second, it’s hard for Tories to explicitly oppose without looking heartless or out-of-touch, especially when former Tory education secretary Michael Gove has said he supports adding VAT to school fees.

Speaking in Nottinghamshire at the launch of the Conservative local election manifesto, Theresa May was pressed on whether it was a good idea – and she didn’t knock it. Instead, she dodged the question and claimed Labour “would bankrupt Britain … Schools would find themselves in a parlous condition if Labour were in government because of the way they would be running the economy.”

If the prime minister is reticent to directly criticise a policy that quite literally takes from richer parents to pay for the less well-off, that could mean Corbyn is on to a winner.

The main criticism of the policy is that it will help middle-class kids rather than the poorest, who already receive free school meals. That may be true, but that is unlikely to have significant political cost. No party ever lost votes by being too kind to middle-class parents.

When Nick Clegg introduced free school meals for five- and six-year-olds in the coalition government, the government faced criticism for failing to anticipate the extra costs to schools because of the increased demand.

Corbyn will be hoping to head this off with the VAT announcement, but Ed Miliband – who could easily have come up with something similar himself – was relentlessly attacked for policies like the mansion tax, which commentators said were the politics of envy. Whether Corbyn can avoid a similar criticism will become clearer over the next 24 hours. Jessica Elgot

What does Labour"s school meals policy mean for families, teachers and politicians?

Girls from poorer families in England struggle to afford sanitary protection

Girls from low-income families across England are struggling to afford sanitary protection, with many teachers buying tampons for their students or seeking help with supplies from charities and voluntary groups, the Guardian has been told.

Charities, campaigners and teachers say that the problem is happening in cities and rural areas across the country, describing girls missing school, using donations, or wearing makeshift protection during their period.

The issue came to light after it was reported that a charity in Leeds, Freedom4Girls, was contacted by a local school who were worried about truancy among teenage girls when they had their period. The charity, which provides products to women in Kenya, agreed to do the same for local girls.

Since then more teachers have come forward to discuss the issue openly, with many contacting charities for help or telling how their schools already support girls in the same situation. Hayley Smith, founder of Flow Aid, a campaign working to provide free sanitary products to the homeless, said that she had a request from a London primary teacher, who worked in multiple schools in the capital, on Monday asking to her to provide sanitary products to young girls who could not afford them.

Smith said: “Teenagers and young girls are being forced to wrap or stuff toilet paper down their knickers, to prevent them from bleeding all over themselves while at schools. The cost of sanitary products are just too much for some girls and their families, and it’s leading to missing school and it’s putting their health at risk.”

“It’s absolutely despicable in the 21st century that girls are being forced to comprise their education simply because an absolute necessity is unavailable and not affordable.”

Smith is now looking at distribution channels to ensure students get supplies. “I work with Ealing Soup Kitchen and St Mungo’s and I am asking them if they have any links in primary schools we can distribute to,” she said. The campaigner added that she is also looking at creating drop off or donation points where people can give products to local schools.

Donations have already been given in Beverley, a market town in east Yorkshire. Councillor Chris Linthwaite, from Molescroft parish council, said the Friends of Longcroft School, a voluntary group, had to step in and provide sanitary donations after an investigation highlighted it as a problem. “Basic school equipment, items of uniform including 80 pairs of shoes were needed too.” The school confirmed the donations.

Rosy Candlin ofEvery Month, a campaign to create packs of menstrual products for people experiencing homelessness or poverty in Manchester, said she had been into a school in Rochdale to talk about this issue, with students raising funds for students who could not afford products.

She agreed there was still a lot of stigma: “For a family to say ‘we cannot afford food’ that’s so much easier to ask for. But because of the shame put on mensuration it’s much harder. Even in food banks we have to tell me to make it explicit that they carry our packs as people less likely to ask for them.”

Candlin says that often people use socks instead or they will simply skip school, as was the case in Leeds.” There’s a lot of girls who use lots of tissue to create makeshift protection, or they will have just a few pads and leave them in for longer, so it becomes unhygienic and unhealthy so there are no real good options.”

The Guardian also heard from dozens of teachers who said that they regularly provide pads and tampons for their students. One teacher in Manchester, who asked to remain anonymous, said: “This year I have a student who has benefited from free sanitary products. The student mentors and I put together two bags of essential toiletries including pads. She does pick up extra supplies every so often. So has another girl in the class. They would benefit from being able to tap into a guaranteed national provision – it’s less embarrassing when you feel you are not the only one.”

Another teacher from Newcastle said: “There is a core group of girls who regularly need to use staff-bought sanitary products. I buy the same brands I use myself, I just make sure I buy extra when they’re on offer.”

One teaching assistant from Surrey said last week someone in her department helped out a pupil who had only been given one sanitary towel for the day by her mother. “The girl came to a member of our department as she did not know what to do. It is not unusual for this to happen and we have a supply of sanitary towels and spare knickers for that purpose.”

Bothana Tashani of Freedom4Girls said that since the story about what was happening in Leeds went public they have heard from teachers, students and organisations all around the UK. “We were not surprised when we were first contacted by a school in Leeds about it. It’s upsetting because no one has talked about it before as there is a lot of shame and embarrassment around not being able to afford sanitary products.”

Tina Leslie of Freedom4Girls has now launched a crowdfunding page to raise money for research into the scale of the issue in the UK, calling for a comprehensive, nationwide study on the issue.

The news comes as a bill is about to go through the Scottish parliament to make it a requirement for schools to provide pads and tampons. A petition has since been started in the UK forTheresa May and the UK government to do the same.

Conservative MP Jason McCartney has since said he will raise the issue in parliament. He has said that he wants to get a group of MPs together to start a campaign for free sanitary products for young girls in need.

Girls from poorer families in England struggle to afford sanitary protection

Families will pay high price for more fruit and veg to improve health | Letters

The idea that 10 items of fruit or veg a day will seriously improve your health is a bit intimidating (Five a day? Try 10 to live longer, say scientists, 23 February). I priced the array pictured with your article. In Sainsbury’s it came to around £2.16; in Lidl £1.88. These amounts don’t seem very big until you multiply by seven for a week (£15.12 and £13.16 respectively), and they start to look frightening. For a family of four, £60.48 and £52.64, respectively.

And buying them would be a logistical nightmare, since few of the items can be bought singly; they all come in different quantities, so you would run out of them at different intervals and probably have to shop several times a week. I wonder how a family on below average income is supposed to come by such large amounts of money, let alone the shopping time? The differences in health between rich and poor families begin to be more easily explained. (Incidentally, you’d have to be very careful about the orange juice since most varieties are loaded with sugar.)
Jeremy Cushing
Exeter

• Dr Jenny Goodman (Letters, 21 February) describes vitamin D2 as synthetic and far less useful than vitamin D3 (cholecalciferol). She is right in that it is less useful to humans than D3, which is the animal form of the vitamin. D2 is present in some lichens, fungi and alfalfa. This means strict vegans would be unable to get D3 into their diet and must make do with D2. We do get most of our vitamin D from sunlight, but in the UK the winter sun is never high enough to provide this. If your shadow is longer than you are tall, you won’t be getting vitamin D.

Goodman mentions the effect of vitamin D on our immune system. Another nutrient we need for this is zinc, which has been found to shorten cold symptoms. Again, vegans and some vegetarians will struggle to get enough, especially if they avoid dairy products and wheat.
Brian Curwain
Christchurch, Dorset

• While I try and eat plenty of fruit most days, the intake proposed by the Imperial College study of 800g a day of fruit and vegetables is far beyond my capacity. It is roughly my total daily food input. And why no potatoes, and where are the proteins and fat we need – albeit in smaller quantities than most of us should eat? Please don’t tell me I have to eat another half a kilo of stuff; to eat that much food I’d be grazing like a rabbit. Isn’t a bit of kale and quinoa with my burger and chips enough?
David Reed
London

• There is a serious problem with Dr Goodman’s proposal that food should be fortified with vitamin D3 as opposed to D2. Most D3 is currently produced from animal sources (lanolin and fish oils), making it unsuitable for vegans and, in some cases, vegetarians too. At present, many foodstuffs simply state that they are fortified with “vitamin D”, with no indication as to whether this is animal-derived D3, non-animal derived D3 (which is much rarer and comes from lichen) or D2. This forces many vegans to err on the side of caution and avoid such products. If more foods are to be fortified with vitamin D3, I would urge manufacturers to switch to the plant-derived version and that this be clearly stated on the product packaging so that vegans may also benefit from it.
Ben Martin
Animal Aid

• I feel sorry for Tony Naylor (How the shops spoiled posh pizza, 22 February) if he thinks that “no one will ever improve on Heinz baked beans by cooking their own”. Of course it’s subjective, and children will usually go for those that are laden with sugar and salt. But having cooked my own baked beans for years, the industrial varieties taste horrid to us – mushy and sweet.

It reminds me of the story about my hero Jane Grigson who, when Elizabeth David suggested she gave her daughter baked beans for tea, replied: “But they take so long to make.” (Even if it’s not true, it ought to be). I’m with Jane. I like to include molasses for sweetness, mustard rather than salt, and onions. Tony Naylor is welcome to try mine any time.
Jill Bennett
St Albans 

• Join the debate – email guardian.letters@theguardian.com

• Read more Guardian letters – click here to visit gu.com/letters

Families will pay high price for more fruit and veg to improve health | Letters

Families will pay high price for more fruit and veg to improve health | Letters

The idea that 10 items of fruit or veg a day will seriously improve your health is a bit intimidating (Five a day? Try 10 to live longer, say scientists, 23 February). I priced the array pictured with your article. In Sainsbury’s it came to around £2.16; in Lidl £1.88. These amounts don’t seem very big until you multiply by seven for a week (£15.12 and £13.16 respectively), and they start to look frightening. For a family of four, £60.48 and £52.64, respectively.

And buying them would be a logistical nightmare, since few of the items can be bought singly; they all come in different quantities, so you would run out of them at different intervals and probably have to shop several times a week. I wonder how a family on below average income is supposed to come by such large amounts of money, let alone the shopping time? The differences in health between rich and poor families begin to be more easily explained. (Incidentally, you’d have to be very careful about the orange juice since most varieties are loaded with sugar.)
Jeremy Cushing
Exeter

• Dr Jenny Goodman (Letters, 21 February) describes vitamin D2 as synthetic and far less useful than vitamin D3 (cholecalciferol). She is right in that it is less useful to humans than D3, which is the animal form of the vitamin. D2 is present in some lichens, fungi and alfalfa. This means strict vegans would be unable to get D3 into their diet and must make do with D2. We do get most of our vitamin D from sunlight, but in the UK the winter sun is never high enough to provide this. If your shadow is longer than you are tall, you won’t be getting vitamin D.

Goodman mentions the effect of vitamin D on our immune system. Another nutrient we need for this is zinc, which has been found to shorten cold symptoms. Again, vegans and some vegetarians will struggle to get enough, especially if they avoid dairy products and wheat.
Brian Curwain
Christchurch, Dorset

• While I try and eat plenty of fruit most days, the intake proposed by the Imperial College study of 800g a day of fruit and vegetables is far beyond my capacity. It is roughly my total daily food input. And why no potatoes, and where are the proteins and fat we need – albeit in smaller quantities than most of us should eat? Please don’t tell me I have to eat another half a kilo of stuff; to eat that much food I’d be grazing like a rabbit. Isn’t a bit of kale and quinoa with my burger and chips enough?
David Reed
London

• There is a serious problem with Dr Goodman’s proposal that food should be fortified with vitamin D3 as opposed to D2. Most D3 is currently produced from animal sources (lanolin and fish oils), making it unsuitable for vegans and, in some cases, vegetarians too. At present, many foodstuffs simply state that they are fortified with “vitamin D”, with no indication as to whether this is animal-derived D3, non-animal derived D3 (which is much rarer and comes from lichen) or D2. This forces many vegans to err on the side of caution and avoid such products. If more foods are to be fortified with vitamin D3, I would urge manufacturers to switch to the plant-derived version and that this be clearly stated on the product packaging so that vegans may also benefit from it.
Ben Martin
Animal Aid

• I feel sorry for Tony Naylor (How the shops spoiled posh pizza, 22 February) if he thinks that “no one will ever improve on Heinz baked beans by cooking their own”. Of course it’s subjective, and children will usually go for those that are laden with sugar and salt. But having cooked my own baked beans for years, the industrial varieties taste horrid to us – mushy and sweet.

It reminds me of the story about my hero Jane Grigson who, when Elizabeth David suggested she gave her daughter baked beans for tea, replied: “But they take so long to make.” (Even if it’s not true, it ought to be). I’m with Jane. I like to include molasses for sweetness, mustard rather than salt, and onions. Tony Naylor is welcome to try mine any time.
Jill Bennett
St Albans 

• Join the debate – email guardian.letters@theguardian.com

• Read more Guardian letters – click here to visit gu.com/letters

Families will pay high price for more fruit and veg to improve health | Letters

Sally Phillips’s film on Down’s is ‘unhelpful’ for families, warns antenatal specialist

One of Britain’s leading antenatal experts has strongly criticised a BBC film about children with Down’s syndrome, before its broadcast this week.

The documentary, A World Without Down’s Syndrome?, will be shown on Wednesday and is presented by the actress Sally Phillips, who has a child with Down’s herself. In the programme Phillips, known for her role as Tilly in Miranda, makes the case against the introduction of a new NHS pregnancy screening test that would detect with 99% accuracy the foetal abnormalities indicating Down’s syndrome.

Jane Fisher, director of Antenatal Results and Choices, an organisation set up to support parents affected by foetal screening and its consequences, said she thought the programme – in which she is interviewed – was “not at all helpful” to people facing difficult decisions around a prenatal diagnosis of disability.

“Sally is a very compelling presenter,” Fisher told the Observer, “and – absolutely – it’s great to have the positive images of people [with Down’s] who are already here. But it’s very personal, and it’s an extra layer of difficulty for couples and families who might be making the decision now about whether to end their pregnancy. It risks offering the suggestion to those who have [decided to end a pregnancy] that they have made the wrong decision.

“It’s too problematic to have one individual representing that choice – one who is an advocate for not screening, who has a high-functioning, much-loved child. A woman who admits she has the resources for extra help with her absolutely lovely little boy.” She added: “No one is casting aspersions on Sally’s son. Or trying to invalidate his right to be here.”

People with Down’s have an extra copy of a chromosome and have learning and developmental difficulties ranging from mild to severe. Some are more prone to serious health conditions, especially heart and thyroid problems.

Jane Fisher, director of Antenatal Results and Choices.

Current testing for the condition takes place after 12 weeks, at which point women are told if they are at high or low risk. They can also be invited to have a more accurate – but invasive – amniocentesis test, which carries a one-in-100 risk of miscarriage.

The new test, non-invasive prenatal (NIPT), is a blood test that boasts a detection rate of 99%. Currently 90% of people informed that their child has Down’s choose to terminate the pregnancy. Anti-screening campaigners fear that rate will rise if the more accurate, non-invasive NIPT is made available on the NHS, something ministers are currently considering. When NIPT was introduced in Iceland, the termination rate rose to 100%. The test is already available in private clinics, costing around £400.

About 750 babies are born each year with Down’s syndrome in the UK, and there are an estimated 40,000 people living with the condition.

In a joint statement with the BBC, the programme’s makers, Dragonfly, said the film was intended to “bring difficult questions into the public arena. This film follows Sally Phillips as she explores what effect the test could have on our society, drawing not only from her first-hand experience but also by meeting several families who give an insight into their experiences of having a child with Down’s syndrome, as well as people with Down’s syndrome themselves. She also talks to health professionals and experts with a wide variety of views.”

Phillips, who is a Christian, is pro-choice, but says women are pressurised into having abortions by medics, and that the positives and rewards in parenting a disabled child are ignored. “Nobody knows what Down’s syndrome children can achieve,” she says.

There will always be people who choose not to screen, who choose to have the child. The point is choice

Jane Fisher

Anti-abortion groups are involved in the Don’t Screen Us Out (DSUO) campaign, calling on MPs not to introduce NIPT. Lynn Murray of DSUO has called the test the “new eugenics”.

But, according to Fisher, the programme’s warning of a potential “world without Down’s”, if NIPT screenings are introduced, is an over-simplification.

“Full respect for Sally,” said Fisher. “You can see her empathy and her love for her son, and wish for people to have a more positive attitude towards the condition. But it’s important we don’t get too simplistic about this. There will always be people who choose not to screen, who choose to have the child. The point is choice.

“We want to make sure that women who take the decision to end the pregnancy are not perceived somehow as saying they do not value people who are here – they are saying this is not something they can do, that it is not right for them or for their families.

“Not only does no one know how their child would be affected by Down’s, but the big conflict for women is the adult the child will be 20 or 30 years down the line. For most women, that is the bit that tips them to end the pregnancy. An adult who will be, at best, vulnerable,” she said.

Sally Phillips in a scene from A World Without Down’s Syndrome? Photograph: Brian Ritchie/BBC/Dragonfly

The Down’s Syndrome Association has not taken a position either for or against the proposed new screening regime, focusing instead on its own Tell It Right, Start It Right educational campaign, which calls for better training and information provided for health professionals.

Carol Boys, chief executive of the charity and mother of a young man with Down’s, said: “For a long time, we’d been receiving calls from families who are going through the screening process and want more information. Quite a number complain about the way they have been treated.

“Our organisation wasn’t set up to make judgments, but you cannot make an informed decision if you don’t have all the facts. The problem with testing is that people go along and don’t really know what they are being tested for or the implications of the result.

“They find themselves in a high-risk category and don’t know what it means. The screening committee have asked us to help them with training, and we are happy to do that.

“We are essentially here for people with Down’s and their families. As far as life for people with Down’s goes, things have come a long, long way in the past 30 years. Life is always going to be more challenging. They have a learning disability, and they are always going to need extra help and support – but then so do a lot of other people in our communities.”

A World Without Down’s Syndrome? is on BBC2 at 9pm on Wednesday

Sally Phillips’s film on Down’s is ‘unhelpful’ for families, warns antenatal specialist

I have seen death unite families and spill secrets that tear them apart

There’s a lot people don’t know about dying.

Most people are terrified of it. We don’t talk about it, and when we do it’s with hushed voices and delicate words. Most of us are blissfully ignorant until it forces us to take notice of it, whether it be because of a terminal illness, a fatal car accident or a loved one snatched from our lives. We are woefully unprepared for it. What are we supposed to do? What should we say? You never imagine it happening to you.

It is a sensitive subject, because deep down we know that it is the one thing in all our lives that is inevitable. Death does not discriminate, and it makes every single one of us equal. I was terrified of it too, but after seven years as an intensive care nurse I am familiar enough with death to be able to see it differently to most.

Death is ugly. It’s not glamorous, and most people do not close their eyes and slip away peacefully at home

Death is ugly. It’s not glamorous, and most people do not close their eyes and slip away peacefully at home in their beds, surrounded by loving family. The death I see comes with plastic tubes and cannulas shoved into oozing blood vessels, giant machines that hiss, click and shriek alarms as they mechanise the life of a human being, and a rainbow of bad smells. It comes with cheap fabric curtains, stiff white sheets and sunken, fluid-swollen skin. It comes with an unexpected phone call that drags you from your bed into cold and uncomfortable waiting rooms at 3am. Even if it is expected, it still comes with an icy shock and a deep, gut-wrenching sadness.

I have seen death unite families that haven’t spoken to each other for 10 years – arguments are forgotten, old grudges are meaningless. I have seen death spill secrets that tear families apart. I have seen a woman bring her lover to the bedside for comfort while her husband lay unconscious. I have called security for two brothers who started to fight about inheritance over the top of their dying mother’s body. I have held in my arms a young woman after her father died, who cried tears of relief at a future without his constant abuse. I have caught grown men from hitting the floor when they faint at the sight of their best mate lying unconscious on a ventilator. I have broken the ribs of patients by doing chest compressions as I am trying to resuscitate them, and not regretted a single one even if they don’t make it. One man, after several hours of stoic silence at his dying wife’s bedside, suddenly broke down in tears and told me in detail about the last time they made love before she collapsed on the way to work with a massive heart attack. I have had a chair thrown at me by the son of a woman who couldn’t be saved, even after 50 bags of blood and three hours of non-stop resuscitation. Death makes you behave in ways you didn’t realise were inside you.

Related: I am dying and I want everyone to talk about it

At 22 years old, three months after finishing my nursing degree, I withdrew the life support from my first brain-dead patient – a man only a year older than me, who was hit by a truck while he was cycling to his girlfriend’s house. I cried for four hours straight and had to be sent home early from work in a taxi because I couldn’t pull myself together enough to drive. I had no idea how to deal with my own feelings, let alone provide comfort to his family and friends. I couldn’t fathom why this particular man, with his beautiful girlfriend and his entire life ahead of him, had just died in front of me. The injustice of it haunted me for days afterward.

Not long after that, I spent three night shifts caring for an 80-year-old grandmother who had been savagely raped and beaten with a fire extinguisher in her own backyard while she was gardening. The trauma to her brain was so severe that the neurosurgeons had to remove a third of her skull to relieve the swelling. Her family was devastated, and as her condition worsened on the morning of my last night shift, they begged us to stop her life support and let her pass away unaware of the horrors that she had suffered. We did.

Dying can be an incredibly moving experience to be a part of. Only recently, I was holding the feathery hand of a 98-year-old woman as she whispered her last breath. Usually, I am a quiet presence in the background, gently adjusting sedative doses of painkillers and waiting to hand over tissues and cups of tea to teary-eyed relatives. This woman had no living family left, and had spent the last year in a nursing home without anyone for company. The nursing home told us that she had been a classical opera singer, and had worked for years in a mission hospital in Africa with her husband.

Related: This is not Casualty – in real life CPR is brutal and usually fails

Now she was comatose in intensive care, surrounded by loud machines that kept her fragile heart beating and her lungs breathing. Now it was up to me to gift her a peaceful and dignified exit from this world, after 98 years of sparkling life. It’s an honour to be present at the end of a life – especially one as long and rich as this woman’s.

Being on such intimate terms with death makes you realise that life is fleeting, fragile and unpredictable. Accepting death is terrifying, but not as terrifying as the thought of wasting the time that you have left before it does. Make sure you die happy.

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I have seen death unite families and spill secrets that tear them apart

Charlotte"s Net: the families making use of healthcare marijuana to support their children

Kim and Chris Clark had experimented with nearly each medical option available for their ten-yr old son Caden, who has serious epilepsy. Then they identified medical marijuana.

Caden Clark has Lennox-Gastaut Syndrome, which provides him in between ten and 70 seizures a day. On poor days he would have over one hundred.

“We had genuinely began getting afraid, since he had reached what they phone expiration age,” explained Kim Clark. “These kids tend to get to this stage and they just seize so much, you know, it will get crucial.”

The Clarks have attempted over twenty diverse varieties of medication, a brain lobectomy and excessive diet programs to alleviate Caden’s seizures – with various degrees of success and side effects.

“I hesitate with the word ‘miracle’, since it truly is not that easy. We’re experiencing items we never ever would have with out it, but we’re nonetheless dealing with the delicate stability of his brain,” Kim explained.

For Chris Clark, health care marijuana was a last resort. Chris has worked for the Atlanta police department for 26 many years, and is presently in charge of monitoring Atlanta’s drug evidence.

“I was true nervous about what my peers would consider about me carrying out this,” he mentioned. “I ultimately came to the conclusion that if there is a possibility that this product could help my kid, then you’ve got to do it.”

In December 2013, the Clarks moved to Colorado Springs to legally obtain a strain of marijuana named Charlotte’s Net. Chris stayed behind in Atlanta for perform, and visits the rest of his family every time he can.

The move seems to have paid off. By the Clarks’ estimate, Caden has had a important reduction in seizures. “We had by no means had a seizure totally free day ever so to go 4 or 5 days (without a seizure) was thoughts-blowing,” Kim Clark stated.

The Stanley brothers very first developed Charlotte’s Web 5 years ago to explore the health care benefits of marijuana for men and women with cancer. When they were 1st approached by the Figi family members, who wished to give the drug to their younger daughter Charlotte, who suffered from extreme epilepsy, the brothers have been cautious.

“All I saw was us in orange jumpsuits at the time. But it was their final alternative,” Jesse Stanley stated.

Far more than 400 households are employing Charlotte’s Internet to treat their young children, and thousands more are on the waiting list. To meet the demand, the Stanley brothers are expanding their operation, and hope to get everyone in Colorado off the listing by the end of 2014.

Charlotte’s World wide web was as soon as acknowledged as ‘Hippie’s Disappointment’ since it doesn’t get its end users high. The drug has greater amounts of cannabidiol (CBD) and reduce doses of THC, which is the psychoactive component of the plant, compared to recreational marijuana.

There is no conclusive proof why CBD may limit seizure action, because marijuana is a routine 1 drug, which the DEA deems to have no healthcare use, and scientific research on marijuana is nevertheless in its infancy.

Dr Orrin Devinsky, who prospects the NYU Epilepsy Center, is one particular of handful of medical doctors who has commenced testing the results of CBD on youngsters. He need to store the drug in a one,200lb safe at his lab due to federal rules.

“It’s frequent for folks hearing extremely great anecdotal stories to feel like they know the answer, and no one should truly feel like these days, based on the data, that any individual has any of the solutions about safety or efficacy,” Dr Devinsky stated.

At the Children’s Hospital Colorado, physicians have reported cases of young children who have gotten worse on Charlotte’s Internet, and, in some situations, gone into intensive care units. Kim Clark says that dozens of households have had to give up the Charlotte’s Web treatment and move back property due to the fact it was both also pricey or didn’t function for their young children.

For now, the evolving legal status of marijuana will largely hold physicians and families guessing.

Charlotte"s Net: the families making use of healthcare marijuana to support their children

Put water on table and cease getting fizzy drinks, nutrition experts inform families

The ideal method is for dad and mom to hold sugary drinks off the meal table, one health professional says. Photograph: Darren Matthews/Alamy

Households need to place a jug of water on the table at mealtimes and cease buying colas and lemonade for their young children, say nutrition authorities.

Sugar-sweetened drinks, like sports drinks which are really higher in sugar, are a key contributor to the obesity epidemic and a certain problem for youngsters, who eat far more of them than adults, say professionals.

Rules to cap the sugar material of drinks and taxes have been canvassed, but Susan Jebb, professor of diet program and population wellness at the University of Oxford and chair of the government’s responsibility deal with the meals and drink industry, stated the ideal method is for mother and father to maintain sugary drinks off the meal table. “Choose one thing else – drink water. When they have been weaned, they need to be drinking water,” she said.

A professor of nutrition and dietetics at King’s University London, Tom Sanders, agreed. “If you put a jug of water on the table, folks drink more water,” he stated. “We must make water universally available. You can have a small glass of fruit juice at breakfast, but just place water on the loved ones dinner table – not pop.”

Sugar is an situation due to the fact it is higher in calories, as is saturated body fat. “It is not anything miraculous or uncommon about sugar. It is a calorie impact,” stated Jebb.

The scientists, speaking ahead of new scientific advice on carbohydrates in the diet including sugar, anticipated to be issued by the government’s advisory committee on nutrition on Thursday, explained food items large in saturated fat, much more calorific than sugar, were just as much a issue. Confectionery, biscuits, cakes and chocolate incorporate sugar and saturated fat.

Sanders spoke of “junk food man”, consuming cakes and biscuits containing saturated fat and sugar. In animal research, higher sugar diet programs alone do not create weight problems, but high fat and sugar diet plans do.

But the food surroundings aids no one. Negotiating supermarket aisles, he stated, “you have to go by means of the walk of shame, surrounded by higher calorie sugary snacks”.

If sugar is addictive, it is almost certainly a behavioural addiction rather than an addiction to the substance itself, said Dr John Menzies, investigation fellow at the Centre for Integrative Physiology at the University of Edinburgh, who is working on an EU-funded task referred to as Neurofast.

He mentioned: “We eat because it is pleasurable, simply because we are motivated to eat. If you taste one thing and like it, like sugar, you are motivated to consume it again. It is the same pathway [in the brain] hijacked by the drugs of abuse but just since they activate the very same pathway isn’t going to necessarily imply it is an addiction.”

Put water on table and cease getting fizzy drinks, nutrition experts inform families

Families in search of water: in photos

Saturday 22nd March 2014 is Globe Water Day. Photographer Mustafah Abdulaziz travelled to Pakistan with WaterAid as component of a larger task searching at water.

In Sindh province, Pakistan, water and its availability dictates the rhythm of everyday existence. Individuals of the remote coastal places of Thatta encounter floods in the rainy season and drought in the dry season, with extreme implications for wellness but also livelihoods: fishermen are without fish to catch farmers are unable to sustain their crops or livestock. By contrast, in the desert plains of Tharparkar, households need to migrate each 3 many years in search of groundwater, which is not only incredibly constrained but also contaminated with substantial amounts of fluoride, foremost to bone abnormalities or skeletal harm. Females, for whom the obligation of collecting water is element of their family duties, invest on common four to 6 hours a day trekking to reach unprotected wells. On summer season days temperatures hover around 48 to 50 degrees Celsius (118 to 122 degrees Fahrenheit) and the falling water table indicates that water need to often be hauled from a depth of 150 to 200 feet. “Women fall unconscious on their way to these dug wells,” said Marvi Bheel, 45, a neighborhood resident in Tharparkar.

Over: Bareej, 27, puts water into a water storage container outside her house, Bewatoo, Tharparkar, Sindh, Pakistan, 2013.

Image: WaterAid/ Mustafah Abdulaziz

Families in search of water: in photos

Families allow down by poor care at scandal-hit children"s heart surgical procedure unit

The report outlined the experiences of sixteen families who complained of poor care at the unit, prompting apologies from each NHS England and the Leeds Educating Hospitals NHS Trust, which runs the hospital.

One mom described how she felt pressurised into getting an abortion, which was towards her Muslim beliefs.

Others complained about a lack of compassion following the death of their child.

NHS England explained in its overview of the report: “We conclude that these households did not get the degree of care or support that they deserved and for this we are truly sorry.”

Operations at the LGI unit were temporarily suspended final 12 months following NHS England raised issues about data on death charges at the centre.

The move provoked an outcry, particularly as mother and father and clinicians from the unit linked it to the ongoing controversy about which children’s heart surgical procedure units were to be closed as portion of a nationwide rationalisation of the service.

Surgery resumed on April ten final yr and NHS England announced it was implementing the full review.

The 1st portion of the report report analysed mortality prices, focussing on the 35 kids who died following surgical procedure at the unit from 2009 to March final year.

A 2nd portion examined the experiences of sixteen families who felt they had been let down by the unit, prompting 6 to have their child’s treatment transferred to another centre.

Michelle Elliott mentioned the unit had been treating her daughter Jessica for eleven many years, and two many years ago explained she needed a transplant.

“My problem was that it took 7 months to get her to the transplant centre, by which time they informed us it was virtually too late,” she advised BBC Radio 4′s Right now programme.

“We acquired there on April 2 for what we believed was a second opinion, only to be taken to the tiny area to be told that actually you are not right here for a 2nd viewpoint, she is very sick and she wants a transplant straight away.”

She received her new heart 27 days later, but in the meantime she had a stroke.

It is the stroke now that is impacting on Jessica’s existence, not the heart.

Ms Elliott stated: “Our argument is that these seven months were wasted, and we could have got her there sooner if I had not been blocked in asking for her to go…

“From the heart stage of view she is doing brilliantly properly, but from the stroke stage of view she is nevertheless not back in mainstream college and she is nevertheless using a wheelchair. But her mind is there.

“We are the lucky ones. There are several mother and father in the group whose infants and children have died.

“We want to operate now with the believe in to make sure other households do not suffer in the way that our family members have suffered.”

Ms Elliott added: “The mortality report says yes, it is protected, but it is not a clean bill of health. There had been quite a few suggestions produced for the heart unit that they have to fulfil more than the coming months.”

An additional mother or father told the investigators: “We had been offered no assistance by the workers after Annie died. We have been provided a leaflet. Nobody asked how we were receiving residence in the early hours of the morning.”

Another described how a book had gone missing in which their son had been creating about his experiences prior to his death.

“It was like shedding an additional element of him,” the parent explained. “We asked the personnel to uncover it. They informed us they could not discover it. They didn’t appear bothered. They didn’t appear to realise what it meant to us.

“We had been going to Leeds for ten many years and no-one particular has rung to see how we are.”

The LGI unit had been earmarked for closure, along with two other individuals in Leicester and the Royal Brompton in west London as portion of a nationwide prepare to streamline children’s cardiac surgical treatment into fewer, far more specialised units.

But, following a fierce campaign by some mothers and fathers whose youngsters have been treated at the LGI and two legal issues, Wellness Secretary Jeremy Hunt halted the prepare and ordered NHS England to re-evaluate the complete approach.

Sir Roger Boyle was head of the National Institute for Cardiovascular Outcomes Study (Nicor) when it raised concerns about outcomes at Leeds final 12 months, and later on explained he would still not send his daughter for treatment method there.

He informed BBC Radio 4′s Today programme the behaviour of MPs who campaigned to keep the unit had been “downright disgraceful”.

Sir Roger stated: “The concepts that I was fighting for remain completely the identical.

“I wanted to minimise danger to these very sick youngsters and make certain that they were cared for in an atmosphere that was caring and compassionate.

“That is what the secure and sustainable programme was aiming to supply.”

Sir Roger insisted there had been an “overpowering consensus” in about 2006 that the NHS needed fewer larger youngster surgical centres that could give a “comprehensive and risk-free services”.

He said he even now believed there were as well a lot of this kind of units, incorporating: “That principle I consider is even now adhered to by numerous but it seems as if the establishment has turned their encounter against it, largely I consider influenced by the power of views of families who have had very good outcomes in each of these centres… but also by way of political intervention.

“The behaviour of some of the MPs was downright disgraceful.

“Notably some of the West Yorkshire MPs vying for position to be the MP who saved the Leeds surgical programme.”

Dr Yvette Oade, the chief medical officer at Leeds Teaching Hospitals, stated: “We are pleased for our patients, households and staff that the Mortality Situation Review has confirmed the health-related and surgical care provided by the children’s heart surgical treatment unit in Leeds is protected.

“We are very sorry nevertheless that the sixteen households who shared their stories with the Loved ones Experience Review felt we did not provide the care they had a appropriate to count on.

“We sincerely apologise to these households and will, of program, make certain we learn from what they had to say and improve our services as a outcome of this.”

NHS England’s deputy health-related director Dr Mike Bewick said: “I am happy to say, on the basis of the proof we at the moment have, that solutions in Leeds are risk-free and are working nicely.”

Dr Bewick thanked the sixteen families whose experiences had been outlined in the assessment.

He mentioned: “This kind of experiences are not able to be defended and I would appear to the believe in to respond positively to this report.”

Mothers and fathers who have campaigned to conserve the Leeds unit welcomed the conclusion the centre was “safe”.

Sharon Cheng, the director of the Children’s Heart Surgical treatment Fund, said: “Leeds’ outcomes and high quality of care are in line with national needs and these of other units, and mother and father can truly feel 100% reassured in the remedy that their youngsters will receive at Leeds.”

Mrs Cheng mentioned: “While 1 complaint is too numerous, the vast majority of households and individuals beneath Leeds’ care inform us on a every day basis what a superb services they get from Leeds and that they come to feel the group has gone above and past to care for their kids.”

But the group Fragile Hearts, which represents dad and mom who have lost their kids or seen them suffer medical harm as a consequence of their heart surgical procedure, stated the report “is proof that the culture which exists at LGI heart unit takes no account of the emotional, psychological or spiritual demands of children or mothers and fathers”.

In a statement, Fragile Hearts mentioned: “We do not believe that the changes instigated by NHS England inside of the unit go far enough as we think that the adjustments necessary are not only in the talent and care supplied but in the mindset of these care providers.

“We as a result get in touch with for systemic changes within the unit, but over all we hope that nobody else ever has to stroll in our shoes.”

It mentioned: “It is our belief that the information provided for the mortality evaluation is flawed and we get in touch with for accessibility to the data by an independent physique a public overview of this data and, indeed, the method followed when a unit fails to meet these targets.”

Anne Keatley-Clarke, chief executive of the Children’s Heart Federation, welcomed “the report’s suggestions that address the unacceptable care obtained by the households”.

But she additional she was “concerned that troubles we raised with the CQC back in 2011 have been totally missed”.

“These contain the top quality of heart surgery and repeat operations, along with the morbidities of children who had received remedy at Leeds Basic Infirmary,” she said.

“We search forward to seeing the third strand of the review which investigates issues that have been raised by other clinicians in relation to inter-unit transfers and patient pathways and hopes that the potential report will deal with our issues.”

Families allow down by poor care at scandal-hit children"s heart surgical procedure unit

Families hope "Frankenstein science" lobby will not quit gene cure for mitochondrial disease

Deniz Safak’s situation continued to worsen until finally he died last year at the age of 23.

Deniz Safak was 5 many years outdated when he initial displayed symptoms of the disease that would later on take his daily life. “He started currently being sick and had extreme, stroke-like seizures,” his mom, Ruth, recalled.

Physicians had been baffled by the boy’s situation and it took months before a diagnosis was produced. Ruth and her husband, Erdhal, had been advised that Deniz was suffering from mitochondrial illness, an incurable condition that is passed from mom to little one and can typically be fatal.

Deniz’s condition continued to worsen. By the time he died last year at the age of 23, he had turn into deaf, suffered extreme migraines and was confined to a wheelchair. “That is how he invested his daily life at the finish,” said Ruth, who lives in Sunderland. “He was really vivid and he knew what he was missing from existence.” There is no remedy for mitochondrial condition and, although its signs fluctuate in their severity, the situation is often fatal. Overall health officials estimate that there are a number of thousand people in Britain impacted by the situation, which is induced by mutations in the DNA in the mitochondria, which exist inside the cells of their bodies.

“Mitochondria are the small electrical power packs that offer our cells with energy and they have their own DNA,” stated Professor Douglas Turnbull, director of the Wellcome Believe in Centre for Mitochondrial Analysis at Newcastle University. “The ailment notably has an effect on cells that use a lot of power, like these involved in hearing, pumping blood and firing nerves. About a third to a half of these who have the condition encounter an early death.”

It is a grim scenario. Nonetheless, hopes of tackling mitochondrial illness will be raised in a couple of weeks when the government announces rules that will permit the use of an IVF approach that must rid impacted households of the disorder. If these ideas are accredited by parliament, Britain will turn out to be the very first nation to permit germ-line gene therapy, which will modify the DNA of future generations in buy to eradicate the problem.

The strategy includes taking an egg with wholesome mitochondria from a donor female. Its main set of nuclear genes is then scooped out and replaced with these of a girl affected by mitochondrial illness but whose basic nuclear DNA is healthful. The egg is then fertilised employing her partner’s sperm. In this way an embryo is designed that has the central genes of the two mothers and fathers but no longer carries the mutated mitochondrial DNA as soon as carried by the mother. The technique is acknowledged as mitochondrial substitute. It has in no way been experimented with on humans, but has worked in animal research.

Most scientists and doctors, especially those who work with households touched by mitochondrial ailment, help the introduction of the method. However, some groups vociferously oppose its use. “The social positive aspects for a reasonably modest amount of females … do not come close to to justifying the potential overall health dangers from these techniques to the youngster and the risks to global society that stem from human genetic engineering,” mentioned the campaign group Human Genetics Alert.

Anti-abortion groups also oppose mitochondrial substitute, while some tabloid newspapers have described the creation of embryos making use of the nuclear DNA of two dad and mom and the mitochondrial DNA of a third-get together donor as “three-parent infants” and have claimed that this represents a slippery slope to a “Frankenstein long term”.

This final claim specifically infuriates researchers. “It is wrong to say this generates three-mother or father babies,” stated Turnbull. “Far more than 99.9% of DNA is nuclear DNA and that will not be impacted. Mitochondrial DNA accounts for around .1% of our total DNA. We are altering only mitochondrial DNA. We are not altering a person’s hair or height or eye colour.”

The potential of mitochondrial substitute is demonstrated by means of an additional of Turnbull’s individuals: Marie Austen, also from Sunderland. Her son, Adam, was seven when he was diagnosed with mitochondrial DNA ailment. His heart was subsequently discovered to have been broken but, ahead of he could have a transplant, Adam’s problem worsened and he died final yr at the age of 13. “I wished to see Adam increase up, but that has been taken from me,” mentioned Marie.

Austen has yet another child, a daughter, who at present has no symptoms. Even so, the condition varies in the severity of its signs and symptoms as it passes from generation to generation. This poses problems for Marie’s daughter. “One day she may possibly want to have her own kids, but she will not be able to have them protected in the information that this ailment will not kill them when they are young. That is why I want this new strategy to be given the go-ahead, so my daughter will have healthier mitochondria and can have children who will not die when they are teenagers, as her brother Adam did.”

The ailment is passed via the maternal line simply because males do not pass on mitochondrial DNA to potential generations. Only ladies do that. However, the mutated versions do so with unpredictable consequences. Each Ruth and Marie have severe hearing problems, for example. Even so, the edition picked up by their sons was far worse in its effects.

Final yr the Human Fertilisation and Embryology Authority (HFEA) completed an comprehensive public consultation on mitochondrial replacement and discovered widespread assistance for it. Now the proposed laws that will let it to be carried out, under licence from the HFEA, are to published. Interested events will give their views on these laws prior to they are debated by parliament, almost certainly on a totally free vote, later on this 12 months.

Alison Murdoch, professor of reproductive medication at Newcastle University,hopes that parliament will approve the new laws – however she is only cautiously hopeful. “This is controversial in some people’s eyes and there will be attempts to block the regulations. My dread is that the government could nevertheless get cold feet and delay the vote, which would not be excellent information provided we will have a basic election following year.

“The difficulties is that the folks who oppose this operate are significantly better organised and proactive than the folks that truly need to have the remedy,” Murdoch said. “They claim that about thirty% of the population is towards this type of healthcare intervention. But when you in fact sit down with a group of men and women and make clear what you want to do, they all say the identical issue: why not?”

Ruth Safak will also be viewing the forthcoming battle above the implementation of mitochondrial replacement treatment. She is passionately in favour of the method. “When you get rid of a youngster, there is not sufficient time to get above it. This point wipes out your lifestyle. The stage is that if this treatment had become offered for me when I was beginning my family members, I could have had Deniz and he would nonetheless be with me now.”

Families hope "Frankenstein science" lobby will not quit gene cure for mitochondrial disease

A day in the lifestyle of ... a wellness visitor for homeless families

Tracy Bromley helps households living in hostels and refuges, as effectively as the Gypsy and Traveller communities, achieve access to wellness, housing and social care providers.

I like to be in the office by 8am, or could start off the day functioning from house. This flexibility implies I can log on to the network to accessibility clinical data without having obtaining to travel throughout rush hour – it truly saves time.

As a expert well being visitor for homeless families, I cover a wide geographical area, but carry a smaller sized caseload than generic overall health visitors. This indicates my team and I can offer you an enhanced services to the vulnerable households we appear soon after. It is my task to assess the well being needs of homeless families and help them access overall health providers and other mainstream providers.

There is no normal day at work with my role: no two days are ever the identical. The families that I work with are transient in nature, and I travel to their short-term accommodation wherever they are primarily based. This may include households who are residing in hostels or bed and breakfast accommodation, people of no fixed abode and the Gypsy and Traveller community. I also operate with families who are living in refuge accommodation possessing fled domestic abuse, and would really like to build a vulnerable families wellness-going to team.

The bed and breakfast hotels are spread across the town, and it is normal for me to check out a family members who are residing in one area. Private amenities are typically shared, and it is commonplace for there not to be any cooking facilities. The mothers and fathers that I meet truly worry about having to feed their family on takeaway food and, for those who are already on a reduced revenue, the value adds to their concern.

When I knock on the door, households are actually pleased to meet someone with whom they can share their worries and who is sympathetic to their crisis situation. In the course of the day I could liaise with housing officers, as households actually benefit from getting assistance to get an update on their application for housing.

The factor of my function that I discover most rewarding is gaining the trust and self confidence of my consumers and being ready to advocate on their behalf. The households that I operate with could quite effortlessly be ignored as they do not often have a voice. It is essential that I increase awareness of the influence that homelessness has on the well being of families, so my day might include attending meetings with other agencies. I am operating to enhance communication between wellness and social care.

In the course of the day my automobile gets my workplace and en route I will cease and make calls, perhaps to a midwife, children’s social care or to our neighborhood meals bank to acquire a parcel for a family members in need to have. Lunch is generally in my auto this provides me room to catch up.

My eclectic nursing background has led me to my present function, and my passion is working with varied groups. I may finish the day by visiting an unauthorised traveller encampment that has pitched up on a nearby website. We know that the wellness of Gypsies and Travellers in the United kingdom is much poorer than that of the common population. The families on web site are pleased to see a well being visitor and ask for assistance with receiving their children’s “needles” (the Traveller phrase for immunisations) completed.

Due to the fact of the transient nature of their accommodation, homeless households are less probably to be registered with a GP. Part of my work is to facilitate obtaining this sorted out as quickly as attainable, which in flip assists all of us in direction of the aim of improving the well being outcomes for homeless families.

When I am not working I adore to travel. I notably like cities and I am working my way by means of my must-see wish checklist around the world.

This article is published by Guardian Specialist. Join the Healthcare Pros Network to get normal emails and exclusive gives.

If you would like to characteristic in our Day in the Existence series, or know someone who would, e-mail healthcare@theguardian.com

A day in the lifestyle of ... a wellness visitor for homeless families

Ethiopia"s model families hailed as agents of social transformation

Wudinesh Demisse raises her hand over her head, displaying off the matchstick-sized birth-management implant embedded just beneath the skin of her upper arm.

Demisse, 28, is a farmer in rural West Arsi, in Ethiopia’s central Oromia area. With 3 kids already, Demisse says it is time to cease. “For me, 3 is enough,” she says, through a translator. “If they are too a lot of, they are too high-priced.”

Demisse, who lives in a tiny village 200km south of the capital, Addis Ababa, is one particular of hundreds of thousands of Ethiopian ladies who have gained accessibility to modern day forms of birth handle above the previous decade. These days, her local well being publish stocks a range of items, from condoms and pills to longer-acting injections and implants.

Ethiopia is more and more touted as a household planning success story. The government, which has made maternal and child wellness national priorities, is proud of its statistics – the country’s contraceptive prevalence fee, for instance, jumped from 15% in 2005 to 29% in 2011 – and says efforts to attain remote, rural locations lie at the heart of its accomplishment.

Along with skilled, salaried overall health extension staff – all of whom are female, a stage to make families much more comfy with door-to-door visits – thousands of volunteers have been enlisted nationwide in the government’s “well being growth army”.

At the centre of this are men and women like Demisse and her husband, who head a single of the government’s celebrated “model households” and are footsoldiers in a substantial social engineering venture to redefine healthy behaviour.

“They are role designs and adjust agents for social transformation in every single village across the country,” says Kesetebirhan Admasu, Ethiopia’s wellness minister, who explains that the venture is based on a theory of how innovations spread that assumes alter takes place step by step. The thought is that there are “trendsetters” in every single neighborhood, and that other individuals can be persuaded to admire and, at some point, copy their behaviour.

To turn into a model loved ones, a family has to adopt most if not all of the government’s sixteen priority interventions – from vaccinating their children and sleeping below mosquito bednets to building separate latrines and employing family preparing.

Model families get certificates, are celebrated at village ceremonies and are asked to support five other households in adopting the priority interventions.

Ethiopia, Africa’s 2nd most populous country, is overwhelmingly rural and this has hampered the growth of formal healthcare companies and infrastructure. Estimates from 2009 recommend there was only a single medical doctor for each and every 50,000 individuals. The government’s health extension programme is a strategy to bridge the gap and develop capacity even though expanding the solutions.

The NGO Marie Stopes Global has urged wealthy countries to adopt some of Ethiopia’s methods, saying they could save hundreds of thousands of bucks if they too trained up frontline well being staff, nurses and midwives to carry out duties – this kind of as the fitting of implants – otherwise completed by doctors.

For Admasu, the largest successes have come from focusing on “cultural and perspective-related bottlenecks”, which restrict rural girls from taking up solutions even when they are accessible.

In one region, Admasu says the overall health development army assisted the government understand why females were not giving birth in wellness amenities. The army found girls were fearful of the conventional stretchers used to carry them to hospital (which had turn into connected with bad luck) and did not want to go with out the traditional coffee and religious ceremonies they could get at house. This led to changes such as a newly-designed stretcher and plans to bring coffee beans, standard food, and religious leaders to wellness services.

“All these innovations and interventions, they look to be straightforward but it is altering the way companies are perceived,” Admasu says. In the situation of household preparing, he says merchandise like implants were not common just before but are now being utilised by a significant amount of rural ladies. “It’s all due to the fact of the data that they get from their neighbours, from their close friends and so on,” he says. “That is how they break all people cultural norms.”

A lot of African nations have set up comprehensive neighborhood healthworker schemes to attain rural places. Comprehending why people behave the way they do, and structuring projects accordingly, is also an more and more well-known approach in development, and a response to the failures of several skilled-led schemes. The World Financial institution, for example, is doing work on a significant report on the behavioural and social foundations of economic development, anticipated this 12 months.

The military metaphors in Ethiopia’s programme set it apart from several others, nevertheless. “Such a motion would not be profitable with no the discipline of the army,” insists Admasu. “We said this is the way we really want to mobilise the community – they participate in the meetings, they function with the discipline of an army, and they tackle the essential bottlenecks.”

Admasu says it is the government’s policy to guarantee girls are not coerced into taking up wellness interventions. But some are suspicious of the growth army model, which is also becoming pursued in agriculture with a nationwide network of “model farmers”.

Ethiopian journalist Henok Reta has reported, for example, that model farmers who boast of their outcomes look to have been coached by extension staff and are unwilling to speak about failures, difficulties such as the value of seeds, and what they want the government to do subsequent. A recent paper from the Overseas Advancement Institute thinktank in London notes that local community mobilisation efforts in Ethiopia, such as the advancement army, can supply the ruling party with new mechanisms to monitor its citizens.

Teferi Abate Adem, former chairman of the division of sociology and anthropology at Addis Ababa University, argues that the agriculture extension programme has “reinforced the rural presence and authoritarian powers of the ruling celebration whilst largely failing to boost smallholder agriculture”.

Ethiopia"s model families hailed as agents of social transformation