Category Archives: Depressions

Sierra Leone: teenage girls are dying from unsafe abortions and risky pregnancies

I recently saw a girl in clinic with terrible complications following a caesarean section. The operation had been botched and she had an infection around her uterus. She was in terrible pain and critically unwell. This was in the children’s clinic; the girl was 14 years old.

This scenario is all too common. She is just one of the thousands of adolescent girls estimated to have become pregnant this year in Sierra Leone. In 2013 the country had the 7th highest teenage pregnancy rate in the world, 38% of women aged 20-24 had their first baby before the age of 18. Sierra Leone is by no means an exception. Worldwide teenage pregnancy is a huge issue, 11% of births globally are to women aged 15-19, with the majority of these taking place in low- and middle-income countries.

From a medical point of view, teenage pregnancy is terribly risky. Teenage mothers are estimated to be 40-60% more likely to die in childbirth. Their babies are 50% more likely to be stillborn or die shortly after birth than babies born to mothers in their 20s.

Terrifying medical complications aside, it can be devastating socially and economically for adolescent mums. In 2015, when schools in Sierra Leone reopened after the Ebola crisis, the minister for education banned visibly pregnant girls from school and sitting exams. This discriminatory ban persists and has been strongly condemned by, among others, Amnesty International.

A “bridging system” was started where girls can seek alternative education elsewhere, but the disruption remains huge. Often girls will be prevented from sitting exams and need to repeat a whole year of school, meaning many will not go back at all. This discriminates against the girls, but not the men who get them pregnant. After giving birth they face continued problems reintegrating into their schools of choice.

During the recent Ebola crisis teen pregnancy rates rose in Sierra Leone by an estimated 50%. This rise could give insights into why the country’s teen pregnancy rate is so high. A factor highlighted as being behind the spike in pregnancy during the Ebola outbreak was extreme poverty, with girls reportedly having sex in exchange for water, food or other forms of financial protection.

What can be done to help these girls? This problem is complex with many driving factors.

The UK is one of Europe’s great success stories with reducing its high teenage pregnancy rate. Improved sex education and access to contraception and changes in social norms are credited with this drop. Can any of the lessons learned be applied in this context?

Improving knowledge of and access to contraception is certainly important. Access to contraception in Sierra Leone is limited; an estimated 16% of women in Sierra Leone use contraception and this figure falls to 7.8% for teenagers. Safe access to abortion for girls who do not want to continue their pregnancy is essential. In Sierra Leone, the country with the world’s worst maternal mortality, abortion is illegal in nearly all circumstances and unsafe abortion is estimated to account for 10% of maternal deaths. This will only be compounded by Trump’s enactment of the “global gag rule” which has a disastrous effect on funding for organisations working for women’s reproductive rights.

The girls themselves will never be the key to reducing the teenage pregnancy rate. There has to be buy in from the men

However, assuming that knowledge about and access to contraception would end this problem is deeply misguided. It puts all of the onus on to the girls not to get pregnant, it assumes they have the option of making a choice. Even when contraception is available many of the girls are not empowered to insist on its use. This approach ignores the wider societal contexts that drive the high teenage pregnancy rate. A recent report by the Secure Livelihoods Research Consortium highlighted some of the inadequacies in current programming.

The girls themselves will never be the key to reducing the teenage pregnancy rate. There has to be buy-in from the men, and a change in attitudes that currently accept the concept of teenage pregnancy. Currently, a lot of work being done on this issue focuses only on the girls. Addressing the attitudes that perpetuate teenage pregnancy is difficult and there are few programmes that do this at the moment. It is easy to pick out and identify the teenage women, but harder to involve the men who could potentially impregnate them.

The high adolescent pregnancy rate, in Sierra Leone and around the world, jeopardises the achievement of the sustainable development goals (SDGs). The SDGs focus specifically on reducing maternal mortality, improving health for all ages and promoting women’s rights. Teenage pregnancy is a threat to the realisation of all those goals and so meaningful efforts to reduce the appalling rate are essential to making any progress.

In the hospital where I work, a teenage pregnancy support group is going on. Girls receive education sessions. Efforts are being made to find them jobs and reintegrate them into the school system. The excitement of the girls is palpable. Many of them have come from situations where they are not shown any respect, but now they are being empowered to take control of this important part of their lives.

This month the UK government hosted Family Planning Summit 2017 to recommit to this global issue, announcing that the UK would increase international development spending on family planning from £180m per year until 2020 to £225m per year until 2022. Governments from countries around the world came together to make commitments to improving women’s access to family planning. In the face of Trump’s regressive change to US policy, putting women’s reproductive rights at the centre of the international community’s agenda is of great importance.

HPV vaccine: anger over decision not to extend NHS scheme to boys

A decision not to vaccinate boys against a cancer-causing sexually transmitted infection has been condemned by health bodies and campaigners.

The Joint Committee on Vaccination and Immunisation (JCVI), which has been reviewing the human papilloma virus (HPV) vaccination programme, concluded that it was “highly unlikely to be cost-effective” to extend the scheme to include adolescent boys as well as girls.

Since 2008, all girls aged 12 to 13 are offered the HPV vaccination as part of the NHS childhood vaccination programme, and the JCVI has been considering whether to include boys on the scheme since 2014.

Up to eight out of 10 people will be infected with the virus at some point in their lives and it has been linked to one in 20 cases of cancer in the UK, according to health professionals. Campaigners have been calling for a gender-neutral approach to the vaccination, which would ensure that 400,000 school-age boys are not left at risk.

The committee, which has yet to publish its final recommendation, said in an interim statement that studies “consistently show” boys are afforded “considerable herd protection” when there is high uptake of the vaccine in girls.

Critics called the decision “indefensible”. The Faculty of Sexual and Reproductive Healthcare (FSRH), a membership body for healthcare professionals who work in sexual and reproductive health, said the decision should be reversed when the JCVI meets again in October.

Asha Kasliwal, the FSRH president, said the interim decision to deny boys the HPV vaccination was a huge missed opportunity for improving long-term sexual and reproductive health outcomes and tackling gender inequality.

Kasliwal said: “FSRH aims to improve women’s sexual and reproductive health, especially access to contraception. However, HPV affects not only women, but also men, and FSRH firmly believes that men and boys are vital in contributing to secure women’s reproductive health and rights.

“We support boys’ and men’s right to access high-quality [sexual and reproductive healthcare] services and live a life free of sexually transmitted infections such as HPV.”

Peter Baker, director of the campaign group HPV Action, said the decision was about saving money and not improving health: “It is astonishing that the government’s vaccination advisory committee has ignored advice from patient organisations, doctors treating men with HPV-related cancers, public health experts and those whose lives have been devastated by HPV.”

Baker said HPV Action would urge ministers to make the right decision and said there might also be grounds for a legal challenge on the grounds that a decision to leave boys and men at risk breaches equality law.

A recent poll conducted by HPV Action showed that 94% of GPs backed the expansion of the programme, with the same proportion saying if they had a son, they would want them to receive the vaccination. Both positions were also supported by 97% of dentists.

Mick Armstrong, the chair of the British Dental Association, said: “HPV has emerged as the leading cause of oropharyngeal cancers, so JCVI’s unwillingness to expand the vaccination programme to boys is frankly indefensible. The state has a responsibility to offer all our children the best possible defence.

“Dentists are on the frontline in the battle against oral cancer, a condition with heart-breaking and life-changing results. Ministers can choose to sit this one out, or show they really believe in prevention.”

The JCVI said: “The JCVI is consulting on its interim findings to ensure that the most appropriate and up-to-date evidence has been used, and that reasonable assumptions have been made where evidence is limited or unavailable. Once the consultation is completed, the JCVI will develop and publish its final advice.”

Polluted air ‘poisoning thousands’ across north of England, warns report

Dangerous levels of air pollution in towns and cities across the north of England are threatening the health of hundreds of thousands of people and stifling economic growth, according to a new report.

The analysis by the Institute for Public Policy Research (IPPR) North describes air pollution as “the tobacco of the 21st century” and says that while there has been a growing concern about the problem in London, many residents in regional towns and cities are unaware of the threat to their health.

Darren Baxter, researcher at IPPR North, said it was time the government took radical action.

“Too often the attention focuses on unclean air in the capital, but the reality is that it’s poisoning thousands in our regional cities too,” said Baxter. “Michael Gove [the new environment secretary] must show that the government is not prepared to sit on its hands while up to 40,000 people are killed every year from dirty air. We need to see radical plans to ditch diesel, introduce incentives for electric cars and bring in clean air zones in our major cities.”

The government has suffered two legal defeats over its plans to improve air quality in the UK after judges ruled they were so poor as to be unlawful. The courts have given ministers until 31 July to publish a new plan.

Campaigners want Gove to introduce a range of measures including charging clean air zones in the worst hit areas and a diesel scrappage scheme to compensate drivers who bought diesel cars after being told they were better for the environment.

The government’s own figures show that although London has by far the highest level of nitrogen dioxide (NO2) pollution, many urban areas – including large swaths of the Midlands, the north-west, West Yorkshire and the northeast – suffer dangerous levels of pollution.

The scale of the air pollution crisis was revealed in a joint Guardian-Greenpeace investigation earlier this year, showing hundreds of thousands of children were being educated within 150 metres of a road where levels of NO2 from diesel traffic breached legal limits.

Figures obtained by Labour showed that more than 38 million people, representing 59.3% of the UK population, were living in areas where levels of NO2 pollution were above legal limits.

Baxter said: “This is the tobacco of the 21st century, and every single preventable death is a failure of government action. Gove must get a grip on this crisis which is killing literally thousands of children and adults a year.”

Tuesday’s report estimates that congestion in the north of England will increase by 3% annually. Estimates put the cost of congestion in Manchester and Liverpool alone at £2bn in 2015.

The study is the latest from IPPR North’s Northern Energy Taskforce, which has identified the energy sector as one of four key priority areas for the economy in northern England, along with manufacturing, health and digital.

“By taking the killer air crisis seriously, we can prevent many unnecessary deaths and ill-health, especially in our children, while preparing the way for a Northern green jobs revolution,” said Baxter.

The report calls for central government, councils and transport bodies to:

Radically improve green public transport links, especially rail connections, and to prioritise hydrogen-powered trains.

Pledge to phase out diesel cars over the coming years, in part to help spur the electric car market, in which sector the north is becoming a world leader.

Introduce a new car scrappage scheme to encourage car owners to upgrade to electric vehicles.

The scandal of big tobacco’s behaviour in the developing world | Letters

I welcome your editorial and related coverage (Stop the spread of the tobacco companies’ poison, 13 July). Tobacco smoking is still the largest single preventable cause of ill-health and death. In the UK the reduction in smoking is one of the great public health success stories. However, it is important that this achievement is not reversed. E-cigarettes should be monitored closely.

Tobacco companies have tremendous financial and political power and, despite the overwhelming medical evidence against cigarettes, they are still able to sell their products. Moreover, certain markets are expanding. Two of the world’s largest tobacco companies are based in the UK. Both continue to perform strongly and are confident about their future performances, especially as markets are growing in lower income countries where there is tremendous potential for profit.

Many of the current strategies used by tobacco companies are not new. More than 30 years ago, Peter Taylor published a seminal book which provided a comprehensive insight into the world of public health politics. The Smoke Ring discusses the ring of political and economic interests surrounding the tobacco industry.
Dr Michael Craig Watson
University of Nottingham

We are concerned, if not surprised, to read the Guardian’s exposé of big tobacco’s use of trade measures to threaten African countries into watering down their efforts to promote public health (Report, 12 July).

A major problem with trade and investment agreements is their chilling effect on public interest legislation: countries that lack the time or resources to defend themselves against a trade dispute hold back from introducing new measures that are good for the public but threaten corporate profits and could provoke a trade challenge. This is particularly problematic where corporations are able to use the investor-state dispute settlement mechanism to sue governments in private tribunals where corporate lawyers act as judges.

For example, after Philip Morris challenged Uruguay and Australia for introducing graphic warnings on cigarette packaging and plain packaging respectively, Costa Rica, Paraguay and New Zealand delayed introducing similar measures. Philip Morris lost that case, but big tobacco is still attempting to bully (particularly low and middle income) countries that attempt to put the health of their citizens before shareholder profit. This has to be stopped.

Countries must be free to pursue independent development and public health strategies. That means having the space to regulate and tax in the public interest without the threat of litigation. We would like to see trade agreements that encourage governments to promote public health objectives, rather than acting as a brake on progress. This requires a fundamental shift in the way that we approach trade deals in the future.
Matthew Bramall Health Poverty Action
Paul Keenlyside Trade Justice Movement
David McCoy Professor of Global Public Health, Queen Mary University London
Dr Penelope Milsom Medact
Deowan Mohee African Tobacco Control Alliance
Alvin Mosioma Tax Justice Network – Africa
Mary Assunta South East Asia Tobacco Control Alliance
Deborah Arnott ASH (UK)
Laurent Huber Action on Smoking and Health (US)
Chiara Bodini and David Sanders People’s Health Movement 
Andreas Wulf Medico International
Jean Blaylock Global Justice Now
Mark Dearn War on Want
Thanguy Nzue Obame People’s Health Movement Gabon

That big tobacco hinders the adoption of anti-smoking legislation is no surprise. Your leader correctly identifies the best route to behavioural change – shareholder pressure – but does not highlight the key channel to achieve this. Big tobacco needs to diversify. This is where shareholder pressure should be applied: to encourage manufacturers and associated leaf merchants to invest in non-harmful products and speed up the process of product diversification. In addition, governments in the south and their development partners should work with manufacturers and merchants to reduce big tobacco’s own addiction to the evil weed.
Dr Martin Prowse
Lund University, Sweden

It is a proud claim we make in this country that 0.7% of our GDP is committed to international development. But efforts to reduce poverty and ill health in developing countries are seriously undermined by the activities of companies such as British American Tobacco.

The tobacco industry has an unrivalled record for dishonesty in trying to prevent its customers becoming aware that there is a 50% chance that they will die from smoking-related causes. It has been a long battle in this country to establish strong measures of tobacco control which have significantly reduced the prevalence of smoking.

In response, the tobacco companies are seeking to get many more people in the developing world addicted to their products. They use the same bogus arguments that have been defeated in the UK to prevent attempts by governments in those countries to prevent this happening. They behave in this way because they make great profits.

The world would be a much better place if such dangerous products were banned. But if this cannot be done by international agreement, then we must at least ensure that we tax them in such a way as to deter such behaviour. The funds raised could also help poorer countries in their fight to establish similar measures of tobacco control to those that are working in the UK.
Chris Rennard
Liberal Democrat, House of Lords

It is deeply unethical that BAT has taken African countries to court to dilute their efforts to protect their populations’ health from tobacco. These countries are still fighting infectious diseases and face a double burden of poor health as a result of non-communicable diseases, with very limited budgets to deal with these.

According to the international covenant on economic, social and cultural rights in the context of business activities (June 2017), these countries are obliged to protect their public’s health, and this includes regulating to restrict marketing and advertising of harmful products such as tobacco.

BAT is headquartered in the UK, so the UK is required to take the necessary steps to prevent human rights violations abroad and it is “contradictory to remain passive where the conduct of an entity may lead to foreseeable harm”.

Moreover, “extraterritorial obligation to protect requires the UK to take steps to prevent and redress infringements of rights that occur outside their territories due to the activities of business entities over which they can exercise control.”

If the UK does not fulfil its extraterritorial responsibility to protect future smokers in Africa, it is possible that it could be liable for damages when many develop cancer, heart disease and strokes. It is incoherent to give British aid for healthcare to these countries while at the same time a UK company is promoting harmful products that diminish people’s right to health.

On a related subject, British MP pension fund, the Parliamentary Contributory Pension Fund (PCPF), invests in BAT and some UK local authority pensions invest large sums in the tobacco industry which many already consider unethical even before the article in the Guardian.
Dr Bernadette O’Hare
University of Malawi and University of St Andrews

Smoking remains a major public health concern, a major contributor to overall mortality and morbidity, to air and water pollution and to physical, economic, social and psychological trauma. However, I must take issue with your allusion to the size of the distance from the developed to the developing world.

The Grenfell tragedy has shone a light on the ills of western societies where people are denied their fundamental rights to safe, clean and adequate housing; where hundreds of thousands are languishing in cramped and dangerous buildings; where homelessness, labour exploitation, knife crimes, racial and religious intolerance and joblessness are increasingly becoming hallmarks of society – and where cover up and deceit are becoming the norm rather than the exception.

To be fair, many developing countries have already recovered from the ills that still plague the developed world. Take a look in the mirror.
Dr Munjed Farid Al Qutob

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Suicide Act breaches human right to dignity, high court told

The 1961 Suicide Act breaches human rights protecting dignity and personal autonomy and should be declared illegal, the high court has been told.

At the opening of a week-long courtroom challenge aimed at legalising assisted dying, Richard Gordon QC said risk could not be entirely removed from making difficult medical decisions at the end of patients’ lives.

Gordon represents Noel Conway, 67, a retired lecturer suffering from motor neurone disease, a terminal degenerative illness.

Conway is reliant for 20 hours each day on a non-invasive ventilation device and is said to feel “entombed” as his condition deteriorates. He has been diagnosed as having less than a year to live.

Conway, who wants medical help to end his life in the UK, is too unwell to attend the hearing in court nine of the Royal Courts of Justice in London. He is expected to participate by videolink on Wednesday.

The court has been told that section two of the act, which criminalises any attempt to encourage or assist another person in killing themselves, is incompatible with article eight of the European convention on human rights, which guarantees a right to respect for private life and personal autonomy.

Gordon said those over 18, diagnosed with a terminal illness and given less than six months to live, who have made a voluntary, clear and settled decision to die and have the ability to undertake a final act, should be allowed medical assistance to carry out their wishes in the UK.

Currently, those wishing to end their lives in a more dignified and less painful way say they have to travel to the Dignitas clinic in Switzerland. Conway and his supporters say the UK ban forces them to make that choice far earlier than should be the case.

Noel Conway

Noel Conway has motor neurone disease. Photograph: Annabel Moeller/Dignity in Dying/PA

“The aim of the challenge is to ensure autonomy for everyone in this group,” Gordon said. “Maybe there will be some risks [to weak and vulnerable people], but risks are already present in the law.

“… The choices facing the claimant are therefore stark and unpalatable: seek to bring about his own death now whilst he is physically able to do so but before he is ready to do so; or await death with no control over when and how it comes.”

The legal challenge, he told the court, was not about morality, but the law being incompatible with human rights.

Speaking ahead of the hearing, Lady Meacher, the chair of Dignity in Dying, said: “About 80% of the population support a change in the law to make assisted suicide legal. People feel passionate about this issue and MPs need to understand that.”

This is the first challenge to the law since the case brought by Tony Nicklinson, who was paralysed following a stroke. His claim was dismissed in 2014 by the supreme court, which said it was important that parliament debate the issues before any decision was made by the courts.

In 2015, however, the House of Commons rejected a private member’s bill to introduce assisted dying. It was talked out before MPs had an opportunity to debate the bill in detail.

Linda Deverell, a patron of Dignity in Dying, which supports Conway’s challenge, said before the hearing that a system requiring the approval of at least two doctors and a judge for assisted dying would provide sufficient legal safeguards.

“A law like that is very tight and it’s been working perfectly well in the US state of Oregon for the past 20 years,” she said.

Deverell’s husband had terminal cancer and travelled to Belgium to end his life. “It was absolutely his choice,” she said. “He had to go earlier than if he could make the choice here.

“Not everyone can do it. People talk about ending their lives, but when it comes to it and saying: tThis is the moment, not all are comfortable with their own mortality.

“My husband would have had a few more weeks [if assisted dying had been legal in the UK]. He always had a very bad reaction to morphine. The last few weeks when the cancer was in his bones, liver and lungs were very painful.”

The case is being heard by three judges, Lord Justice Sales, Mrs Justice Whipple and Mr Justice Garnham. The case is opposed by the secretary of state for justice. Judgment is not expected until the autumn.

Campaigners opposed to legalising euthansia also protested outside the courts. Phil Friend, a co-founder of Not Dead Yet, said: “A change in the law is a terrifying prospect to the vast majority of disabled and terminally ill people who work hard towards achieving equality for all.

“Until we have reached that objective, assisted suicide will remain a dangerous and prejudiced option, likely to increase suffering and distress.”

The hearing continues.

Hounds of love: ​how ​support dogs​ can help with everything from diabetes to autism

Coco, a chocolate-brown cocker spaniel puppy, had been living with her owner for just three days when it is likely she saved her life for the first time. Now, six months later, it happens daily. Millie Law, who is 12, has a complex form of type 1 diabetes, which gives her no indication when her blood sugar levels are dangerously low or high. Coco, who can use her powerful sense of smell to detect changes on Millie’s breath or sweat, is one of about 7,000 dogs in Britain offering life-changing – and sometimes life-saving – support to children and adults with a growing range of medical conditions and disabilities.

As well as guide dogs for the blind and hearing dogs, specially trained dogs can provide practical support to those with conditions ranging from multiple sclerosis and cerebral palsy to the effects of stroke and autism. Others can alert to dangerous situations in type 1 diabetes, epilepsy, Addison’s disease, nut allergy, narcolepsy and some cardiac conditions.

“Coco is a guardian angel,” says Millie’s father, Graham. “Before she arrived, Millie didn’t feel safe. She had several frightening emergency hospital admissions. Now she knows Coco is looking after her wherever she goes.”

Coco is in the process of becoming an accredited diabetic alert dog through the organisation Hypo Hounds. Unusually, this new charity works with and trains pet dogs rather than by matching people with pre-trained dogs. Coco is now eight months, and her training should be complete – with her identifying 80% of Millie’s hypos (blood glucose lows) and hypers (highs) – by the age of two.

Coco alerts Millie by barking or pawing at her. In time, she will also then fetch an emergency treatment kit. Though Millie does wear a continuous glucose monitor, it only indicates a problem about 15 minutes after her glucose level has fallen or risen too far. Alert dogs can detect glucose changes around 30 minutes before the level reaches a danger point.

Graham hopes Coco’s skills will allow Millie “a more typical teenage life”; previously difficult not just because of the medical risks, but also because of her lack of confidence. “Millie was too scared to go out without us or to meet friends, and we were worried to let her go. At parties or school trips, she had to have one of us. As a teenager that isn’t ideal.”

Since her diagnosis aged six, Millie’s parents have checked her at 2am every night. “To be honest, every morning we go into Millie’s room to check she is breathing. Extra peace of mind would be incredible.” Aside from her vital alert work, Coco is affectionate and playful pet. “She has been our family dog from the start – we all love her – but she has an incredible bond with Millie. She follows her everywhere. Coco is like a best friend.”

Cohen and his autism-assistance dog, Azerley.

Cohen and his autism-assistance dog, Azerley. Photograph: AmyLawPhotography

For Cohen Hadfield, nine, from South Yorkshire, a canine friend has also been life-changing. Cohen has autism, global developmental delay, a hearing impairment and complex epilepsy. His mother, Sarah, credits Azerley – a labrador/golden retriever cross which has been with the family for three years – with boosting his communication, social skills and happiness.

“Before Azerley, Cohen’s anxiety was so bad we couldn’t really go out. He would refuse or bolt off into the road. We were very isolated and Cohen was so fearful that he started biting his hands. He couldn’t express himself any other way,” she says. “It was heartbreaking.”

Cohen had previously shown no interest in animals and so, admits Sarah, her expectations were low – “but we were prepared to try anything”. She approached the charity Support Dogs and, after a careful matching process, Azerley – a trained autism-assistance dog with the same public access rights as a guide dog – was introduced to the family. “He was lying on the floor and Cohen was watching. Then Cohen went over and just touched Azerley’s paw. It was,” says Sarah, “an incredible moment.”

Cohen’s trust in Azerley grew rapidly. “I think Cohen senses his unconditional love, no matter how he is feeling. A human has expectations – eye contact, conversation – and can be unpredictable. Azerley is a constant, reassuring presence,” she says. “Since the day he moved in, Cohen has never bitten his hands.” The family now enjoys outings – “shopping, to the cinema, bowling” – with Cohen happy to walk attached by a harness to Azerley. “This is exactly what Cohen needs to build life skills and unlock his potential. He can interact with his surroundings, point things out, investigate.”

Should Cohen try to bolt – now very unusual – the dog is able to hold him still. And when Cohen’s anxiety does rise, Azerley nudges him or puts his head on the boy’s lap. At home, Cohen loves to have Azerley lie on his legs (like many children with autism, Cohen finds pressure calming). “He is like a huge sensory teddy bear for Cohen,” says Sarah.

“He just grins and sings to Azerley.” This, says Sarah, is incredible for a recently non-verbal child. “Cohen was using signs, but he soon began to say the words to Azerley as well.” With the dog’s support, Cohen has now enjoyed his first trip to the beach. “Azerley sat beside him as he built his first sandcastle,” says Sarah. As Cohen’s confidence and independence grow, Azerley’s practical role – which currently includes getting Cohen’s clothes out and guiding him through his morning routine – will gradually reduce. By the time Azerley officially stops working, aged about 10, he will be simply a pet for the family. It will be, Sarah believes, a richly deserved retirement. “Cohen was locked in his own world. Azerley has been able to reach in and bring him back.”

Terminally ill man challenges UK’s ban on assisted dying at high court

The case of a terminally ill former lecturer will come before the high court this week in the first substantial legal challenge to the UK’s ban on assisted dying.

Noel Conway, 67, from Shrewsbury, was diagnosed with motor neurone disease in November 2014. His condition is incurable and he is not expected to live beyond the next 12 months.

The high court hearing, involving three senior judges, is scheduled to last five days. Conway is supported by Dignity in Dying and other organisations campaigning to change the 1961 Suicide Act. Those who seek help to end their lives are currently forced to travel to a clinic in Switzerland.

Last week several hundred supporters staged a protest on a Thames river boat outside the Houses of Parliament. Afterwards Conway said: “In the past months I have been struck by the number of people who, like me, want the right to choose how we die. Today has shown the huge strength of feeling of people who want the right to a dignified death.”

Ahead of the hearing, Sarah Wootton, chief executive of Dignity in Dying, said: “The British public overwhelmingly support a change in the law to give terminally ill, mentally competent adults like Noel the choice of an assisted death. [The high court hearing] will consider detailed evidence and legal arguments about whether the current law breaches Noel’s human rights.”

Conway’s lawyers will ask the courts to declare that the blanket ban on assisted dying under the Suicide Act is contrary to the Human Rights Act. They will argue that as a terminally ill, mentally competent adult, his right to a private life – which includes the right to make decisions on the end of his life – is unnecessarily restricted by current laws.

The case has been brought against the Ministry of Justice. Conway is represented by the law firm Irwin Mitchell. The organisation Humanists UK, whose Conway is a member, has been given permission to intervene in the case. His aim is to bring about a change in the law that would legalise assisted dying for those who are terminally ill and are assessed as having six months or less to live.

Andrew Copson, chief executive of Humanists UK, said: “It is completely wrong that people who are of sound mind but terminally ill or incurably suffering are denied the choice to die with dignity. The deliberate extension of suffering as a matter of public policy is a stain on our humanity.

“The majority of the public want change but as long as parliament is unwilling to act, it is up to brave individuals such as Noel to fight for all our rights. We will always stand with such courageous and public-spirited champions.”

The last time a right to die case was considered in detail by the courts was in 2014 when the supreme court asked parliament to reconsider the issue. Parliament debated the subject but rejected making any changes to the law.

Rabbi Dr Jonathan Romain, chair of the interfaith clergy group in favour of assisted dying, said: “Noel Conway’s case is important not just for him, but for all those – including many people of faith – who believe that parliament needs to be given a clear signal by the courts to introduce legislation that permits terminally ill people of sound mind to opt for an assisted death if they so wish, rather than endure further suffering as they decline. It is not only their human right, but in keeping with religious ethics too. There is nothing sacred about suffering, nothing holy about agony.”

Earlier this year, Conway explained why he was fighting the case: “I am going to die, and I have come to terms with this fact. But what I do not accept is being denied the ability to decide the timing and manner of my death. I am not prepared to suffer right to the end, nor do I want to endure a long, drawn-out death in a haze of morphine.

“The only alternative is to spend thousands of pounds, travel hundreds of miles and risk incriminating my loved ones in asking them to accompany me to Dignitas [in Switzerland]. This would also force me to die earlier than I want.

“The option of an assisted death should be available to me, here in this country, in my final six months of life – this is what I am fighting for. It would bring immense peace of mind and allow me to live my life to the fullest, enjoying my final months with my loved ones until I decide the time is right for me to go.”

A separate legal challenge is being brought by a man identified only as “Omid T”, who is also a member of Humanists UK. He is suffering from an incurable condition which causes multiple systems atrophy. His case will be heard in the autumn.

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. Hotlines in other countries can be found here.

Art can be a powerful medicine against dementia | Nicci Gerrard

A few weeks ago, turning on the radio, I hear a voice saying that creative writing can help wounds heal faster. Startled, I turn the volume up. Volunteers were given small wounds; half were then asked to write about something distressing in their life, the other half about something mundane. The wounds of the confessional writers healed substantially more quickly. A thought or a feeling is felt on the skin. Our minds, which have power over our bodies, are in our bodies and are our bodies: we cannot separate the two. Words, self-expression, can tangibly help pain and suffering. Art can be medicine, for body and soul.

Over and over again, I am reminded of the transformative power of art. Answering the phone, I hear a deep and husky voice: “Doe, a deer, a female deer.” My mother, 85, frail, registered blind, bashed about by cancer and several strokes, is having singing lessons. At school, she was made to mouth the words of songs and she never sang again until now. Eighty years after being told she was tone deaf, her voice is being released. “Me, a name I call myself…”

Or recently I found myself in a hall in London, holding hands with a tiny woman from Jamaica and a large man from Birmingham, we dance. Bit by bit, our self-consciousness falls away and we grin at each other, laugh. Dementia has robbed them of their verbal ability – but there are many different languages, many different forms of embodied knowledge and ways that we can connect with each other.

Dementia can look like solitary confinement – and solitary confinement is a torture that drives most people mad

Or sitting in a church in Essex on a Sunday in June, I look across at my friend’s mother. She is in her 90s and has dementia. There are days when she is wretched, chaotic and scared, but each Sunday she is soothed and even enraptured by singing the hymns that she sang when she was a girl. The music has worn grooves in her memory and while she may not be able to speak in full sentences any more, she can sing Abide With Me in a true voice and her face, lifted up, looks young, eager, washed clean of anxiety. My friend thinks that at these moments her mother’s brain comes together, “like a flower reviving when it’s being soaked in water”. People with dementia, she says, need to be drenched in art.

And this is precisely what the report of an all-party parliamentary group inquiry into arts, health and wellbeing, to be launched on Wednesday 19 July, will say. After two years of evidence gathering, roundtables and discussions with service users, health and social care professionals, artists and arts organisations, academics, policy-makers and parliamentarians, its unambiguous findings are that the arts can help keep us well, aid our recovery and support longer lives better lived; they can help meet major challenges facing health and social care – ageing, long-term conditions, loneliness and mental health; and they can help save money in the health service and in social care.

Dementia is an area where the arts can radically enhance quality of life by finding a common language and by focusing on everyday, in-the-moment creativity. As Lord Howarth of Newport, co-chair of the all-party parliamentary group, said: “The arts have a vital role to play for people with dementia. Research demonstrates that visual arts, music, dance, digital creativity and other cultural activities can help to delay the onset of dementia and diminish its severity. This not only makes a huge difference to many individuals but also leads to cost savings. If the onset of Alzheimer’s disease (which accounts for 62% of dementias) could be delayed by five years, savings between 2020 and 2035 are estimated at £100bn. Those are powerful statistics, but this isn’t just about money; the arts can play a powerful role in improving the quality of life for people with dementia and for their carers.”

It’s what Seb Crutch and his team are exploring in their inspiring project at the Wellcome Foundation. It’s what is happening with Manchester Camerata’s Music in Mind or with Music for a While, a project led by Arts and Health South West with the Bournemouth Symphony Orchestra, with Wigmore Hall’s participatory Music for Life, with the project A Choir in Every Home and Singing for the Brain; with dance classes in hospitals and residential homes; with art galleries and museums that encourage those with dementia to come and talk about art.

One of a number of drawings by the artist David Shrigley, reflecting on individuals’ stories, that will be published with the report on arts, health and wellbeing on Wednesday.

One of a number of drawings by the artist David Shrigley, reflecting on individuals’ stories, that will be published with the report on arts, health and wellbeing on Wednesday. Photograph: David Shrigley

There are optimistic, imaginative endeavours going on all over the country, in theatres, galleries, cinemas, community centres, pubs, bookshops, peoples’ houses. It’s happening at a macro- and a micro-level. At a conference run by the Creative Dementia Arts Network, where arts organisations and practitioners gathered to share experience, I met two young students from an Oxford school who with fellow students go into local old people’s homes to make art: not the young and healthy doing something for the old and the frail, but doing it with them, each helping the other: this is the kind of project that is springing up all over the country.

I attended one of the monthly sessions at the Royal Academy in London where people with dementia who have been art-lovers through their life – and are art-lovers still – come to talk about a particular work, led by two practising artists. We sat in front of an enigmatic painting by John Singer Sargent, and there was an air of calmness, patience and above all, time, and there were no wrong opinions. There are many ways of seeing. People with dementia are continually contradicted and corrected, their versions of reality denied: it’s Sunday not Friday; you’ve already eaten your breakfast; I’m your wife not your mother; anyway, you are old and she is dead …. In this humanising democratic space, people were encouraged to see, think, feel, remember and express themselves. Slowly at first, they began to talk. There was a sense of language returning and of thoughts feeding off each other. They were listened to with respect and were validated.

Validation is crucial. We are social beings and exist in dialogue; we need to be recognised. In health, we live in a world rich with meanings that we can call upon as a conductor calls upon the orchestra, and are linked to each other by a delicate web of communications. To be human is to have a voice that is heard (by voice I mean that which connects the inner self with the outer world). Sometimes, advanced dementia can look like a form of solitary confinement – and solitary confinement is a torture that drives most people mad. To be trapped inside a brain that is failing, inside a body that is disintegrating, and to have no way of escaping. If evidence is needed, this report robustly demonstrates that the arts can come to our rescue when traditional language has failed: to sing, to dance, to put paint on paper, making a mark that says I am still here, to be touched again (rather than simply handled), to hear music or poems that you used to hear when you were a child, to be part of the great flow of life.

I think of the wonderful film Alive Inside, made about a project in a huge care home in America: an old man with advanced dementia sits slumped in a wheelchair. He drools; his eyes are half closed and it’s impossible to know if he is asleep or awake. A few times a day, soft food is pushed into his mouth. Then someone puts earphones on his head and suddenly the music that he loved when he was a strong young man is pouring into him. Appreciation of music is one of the last things to go. His head lifts. His eyes open and knowledge comes into them. His toothless mouth splits into a beatific grin. And now he is dancing in his chair, swaying. And then this man – who doesn’t speak any longer – is actually singing. The music has reached him, found him, gladdened him and brought him back into life.

It’s like a miracle – but one that happens every day, in care homes, in community halls, in hospitals, wherever kind and imaginative people are realising that the everyday creativity is not an add-on to the basic essentials of life, but woven into its fabric. Oliver Sacks wrote “the function of scientific medicine… is to rectify the ‘It’.” Medical intervention is costly, often short-term and in some cases can be like a wrecking ball swinging through the fragile structures of a life. But art calls upon the “I”. It is an existential medicine that allows us to be subjects once more.

Nicci Gerrard is a novelist and author and co-founder of John’s Campaign

The real reason women freeze their eggs | Eva Wiseman

There’s a story that we’ve been told about why women freeze their eggs, which begins with ambition for a career and ends with them attempting to have it all, and it has always seemed a bit suss to me. I’ve spoken to a lot of women considering babies, both when researching egg freezing, and in my real life as a woman, considering babies, and never have career ambitions been their reason for postponing a family.

Which is not to say it doesn’t happen. I have a glossy image in my head of a professional woman in a nice silk shirt striding into a fertility clinic with a pile of binders and a four-year plan. But largely, no. New research confirms that women are not, as a rule, freezing their eggs for career reasons, but instead because they don’t have a partner. Women see egg freezing as “a technological concession to the man deficit”, using it to “buy time” while they look for a suitable father. And the problem with this problem, is that it’s much harder to talk about.

It’s not the man’s fault. Everybody is reading from the same rule book, where men propose and women play games

Because where does it start? Here you have the women in their 30s, beautiful, confident, independent and hilarious, spending their flat deposit on a single hope, because there is nobody there at night to have a grown-up conversation with about fertility. And here you have the men who learned at school to lose interest in a girl if she texts back too quickly. The thread between the two seems baked in amber, the power imbalance in heterosexual relationships almost integral now to the way we date.

The women I met who have had their eggs frozen spoke noisily and despairingly about the process, becoming very quiet when discussing either a noncommittal boyfriend or their search for a partner. And it’s not just the egg freezers. Come 35, it’s common for women to knock a year or two off their age on dating apps, having seen interest plummet as men assume they’ll be wanting kids within the year. They feel they have to step carefully, not appear “desperate to settle down”. But it comes naturally to many, because this is a game we’ve been learning since our first French kiss, the importance of letting him feel he’s in control.

You see it played out everywhere, from Jane Austen to Love Island, where women must withhold something, whether sex or honesty, in order to drive the relationship forward. It goes unsaid, often, the way women must make sure the guy doesn’t feel intimidated by her success, say, or her stability. The way they must “tone it down”, giggle rather than laugh, laugh rather than joke. Of course, all women aren’t after marriage and kids, but surely most want intimacy and honesty, whether that’s as basic as simply replying to a WhatsApp message, or feeling able to discuss whether they want a family without her boyfriend feeling trapped.

It’s not the man’s fault – we’re all complicit, everybody is reading from the same rule book, where men propose and women play games, but before that everyone’s casual, easy, looking for something, someone, sometime, but probably not you, not now, anyway. And, twist! The people profiting from this ancient can-can are fertility clinics, where women are turning themselves into patients on credit and a prayer. If they just wanted a baby, they could buy donor sperm, but these are women who want to wait for a partner, someone who will go all in and plan for a future.

While work undoubtedly impacts women’s family lives, with its structures seemingly imposed by a minibreaking playboy, the issue that drives the success of the egg freezing industry has never been employer’s attitudes to motherhood, but instead, men’s.

Even if it’s something that only strikes us as it becomes a reality, women know there is a time limit on our fertility. But it’s as if men are encouraged to ignore this icky truth, to look away as if from something obscene. So it seems inevitable, for relationships built among the smoke and mirrors of our flawed dating system, where caution must be exercised at every step to avoid saying something you really mean, that men and women will get to mid-life and be unable to commit. And then that it will be the women of my age left, Googling clinics, looking for a way to freeze time.

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