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Eating disorders cost the UK £9.4 billion in 2020 – we need to invest in a nationwide strategy to tackle this crisis


Hope Virgo

4 min read

The report is calling on the government to develop a UK-wide eating disorder strategy, with a timeline for implementation, adequate ring fenced funding and investment in research.

2020 saw a year like no other as the whole world was engulfed by Covid-19. The fear, losing loved ones, the uncertainty, isolation… I could go on. It won’t be a surprise to any of you that we saw a rapid increase in individuals struggling with eating disorders. But the fact is, before Covid-19, we had a crisis around eating disorder treatment.  

Blaming Covid-19 for the way treatment is, is no longer an option.   

Eating disorders are a growing problem and whilst there are more conversations around food, exercise and health, there still remains a vicious cycle between the lack of awareness, lack of training, lack of funding, lack of research, and dangerous consumeristic messaging from society and the government.

A report written by myself, Dr Agnes Ayton and Professor Gerome Breen as part of the work the Hearts Minds and Genes Coalition for Eating Disorders calculated that the cost of eating disorders on the UK in 2020 was a staggering £9.4 Billion. When we break this down we seen huge costs across society from the loss of productivity (£4.8billion), to healthcare costs (£1.7billion), and carers costs (£1.1billion).

The NHS do an amazing job with the resources they have, but unless we invest there won’t be NHS services for eating disorders

Labour MP, John McDonnell said, “This report shows clearly that in addition to the tragic levels of human suffering caused by eating disorders, there is such a huge economic cost, which demonstrates even further the need for a comprehensive and urgent programme of action from government.” 

Liberal Democrat MP, Wera Hobhouse said, “There is something very wrong with the way eating disorders are treated in the UK and this report provides another angle of their devastating cost.

Eating disorders are serious mental illnesses, and we know that early intervention and access to specialist treatment saves lives. It breaks my heart that in 2021 so many are suffering. It is important that focus must turn to early intervention and prevention with adequate funding and services. eating disorders cause untold human suffering. 

As the chair of the APPG on Eating Disorders I fully support Hope’s ongoing campaigning on this issue which affects so many people’s lives.” 

The public understanding of eating disorders has improved in recent years as more people are speaking out, but it still seems to take a high profile person being affected by an eating disorder to bring it out in to the open, when the reality is, these stories and reports are a stark reminder of what is going on daily across the country in tens of thousands of homes. 

Professor Gerome Breen said, “This report underlies the massive impact eating disorders have across all age groups. We’ve been able to do some research that indicates tractable biology which could form the basis of novel therapeutics, but increased research funding is needed to develop these.”

We are told time and time again that the funding is there, promised that there is a plan in place, but when we look at eating disorders across the country there seems to be a real disconnect in these promises and what we are seeing on the ground. The NHS do an amazing job with the resources they have, but unless we invest there won’t be NHS services for eating disorders!

This is why the report is calling on the government to develop a UK-wide eating disorder strategy, with a timeline for implementation and adequate resources; including ring fenced funding and investment in research. To go alongside this, it is essential that we focus on early intervention from the introduction of eating disorder screening to take place across all health care and corporate settings to eating disorder services working with schools, key stakeholders and the government to develop a whole school approach to eating disorders.

With changes like this, we will not only save money for the NHS, but also save lives. Are we really going to wait until we lose generation after generation before we act on this?

 

Hope Virgo is a mental health campaigner and author and Founder of #DumpTheScales.

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The Olympic and Paralympic heroes inspiring communities


Since The National Lottery started to fund elite sport in 1997, National Lottery players have supported over 5,000 British Olympic and Paralympic athletes. This funding allows Team GB and ParalympicsGB athletes to train full time and benefit from world class facilities, technology, coaching and support teams.

Over 1,000 medals and counting 

This summer saw a fantastic Tokyo Olympic and Paralympic Games with some amazing moments. The first Team GB gold medal in Tokyo, won by swimmer Adam Peaty, was the 100th gold medal for Team GB since funding from The National Lottery was introduced.  Additionally, Paralympian George Peasgood’s bronze medal in the Tokyo C4 road cycling time trial represents an extraordinary milestone: the 1,000th medal won by a British athlete in the Paralympic and Olympic Games, summer and winter, since the introduction of National Lottery funding.

From grassroots to Olympic medal – Peckham’s BMX hero 

However, it’s not just about elite sport. Thanks to support from The National Lottery and its players, funding is being invested into grassroots initiatives that range from getting more young people from urban areas to explore their potential in Olympic and Paralympic sport to providing inclusive community sports opportunities.

CK Flash is the coach and CEO of the south London club that has mentored 21-year-old Tokyo silver medallist, Kye Whyte, since he took up BMX as a toddler. The club in the heart of Peckham was opened in 2013 with the help of £100,000 of funding from The National Lottery.

By helping clubs like Peckham BMX transform the lives of riders like Kye, National Lottery players are playing a vital role in supporting up-and-coming Team GB and ParalympicsGB athletes.

CK, who has seen first-hand the incredible difference that National Lottery funding makes, said, “Kye always seems to surprise me. He’s been with me since he was three. I’ve been running the club for 17 years and getting the club to where it is with the other seven riders who made it onto Team GB.”

CK said it was amazing to see Kye win a silver medal. He added, “It’s a fantastic thing for the community and amazing for kids in the club to look up to. Let’s look at the future and see if we can make some more Kye Whytes.”

Peckham’s Kieran Beneochrise is among the young riders inspired by Kye’s medal-winning performance in Tokyo. The 15-year-old said, “It was amazing for him [Kye] to take silver and it was well deserved. I’ve seen him train here and to know he started in Peckham is really inspiring. My dream is to win gold at the Olympics one day!”

Northampton superstars inspire next generation of swimmers  

Maisie Summers-Newton’s gold medal-winning performances in the pool at the Tokyo 2020 Paralympics is also encouraging people to get involved.

Maisie won gold in both the SB6 100m Breaststroke and SM6 200m Individual Medley, setting a new world record for the latter of 2:56.68 in the process. The 19-year-old’s achievement was celebrated at an event at Northampton Swimming Club attended by three-time Paralympic gold medallist, Oliver Hynd, designed to demonstrate the power of Paralympic sport to inspire, break down barriers, shift perceptions and increase opportunities for all disabled people.

A total of four ParalympicsGB swimmers – Maisie, Ellie Robinson, Zara Mullooly and William Perry – all hail from Northampton Swimming Club and the quartet is inspiring the next generation to get in the pool and give the sport a go.

Oliver, 26, said, “I think the power of sport and the Paralympics is inspiring people and making positive changes to people’s lives. Events like today allow those opportunities to inspire the next generation, and what with Northampton having Maisie, Ellie, Zara and William, we’ve got a really strong showing in Tokyo.

“It’s an excellent opportunity to try to inspire that next generation coming through and the support from The National Lottery has really made a real difference.”

CEO of Swim England, Jane Nickerson, said, “Events like this are really important because this is the grassroots and where it all starts. These clubs inspire other children who can see what can be achieved regardless of disability, so we’re offering opportunities during the Paralympics for children to come along and have a go to see if they like it.”

The support made possible thanks to National Lottery players is vital to the success not only of ParalympicsGB and Team GB, but also community sport initiatives right across the UK.

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To ensure global medical advances, we must collaborate across geopolitical divides


4 min read

At every stage of our response to Covid-19, genomic science has powered our understanding, from developing quick at-home tests to tracking and containing variants.

Genomic science, an industry where the UK leads the world, has made staggering progress in the last twenty years. That progress has often been measured by the successful completion of government-led initiatives, from the US-backed Human Genome Project, to the UK’s 100,000 Genome Project.

These are national projects, but each of them has relied heavily on international cooperation. This spirit of international collaboration has helped translate these advances into medical interventions, from rapid genetic tests in pregnancy to diagnoses for some of the world’s rarest and least understood diseases. 

At every stage of our response to Covid-19, too, genomic science has powered our understanding, from developing quick at-home tests to tracking and containing variants.

Two factors have underpinned the extraordinary success of genomic science in responding to the pandemic. The first has been a strong working relationship with the healthcare system. The second has been the comparative seamless international collaboration on which the scientific community relies.

Genomics is a science that has grown up alongside patients as willing volunteers and with scientists sharing expertise and technology across borders. Genomic scientists are guided by the ethics of informed consent and data security while laboratories are regulated to meet stringent international standards from the very start of the design process.

To maintain that consent, we must be able to trust scientists to remain above politics

Another area in which genomic science has made progress in recent years is in genetic testing in pregnancy. Non-invasive prenatal tests (NIPT) allow clinicians to test pregnant women for chromosomal abnormalities without additional risk of miscarriage. The tests have been rolled out across England from June of this year. Data privacy for patients is of pivotal importance.

The Chinese life science and genomics company, BGI Group, is one of the leading global private biotechnology companies. The company’s scientists went to Wuhan to collect samples when Covid broke out, and it developed a PCR test for the virus in January 2020. Its technology has fought diseases from Ebola to cancers. 

Some of their tests have come under the spotlight recently, following the publication of a study co-conducted by BGI researchers using information from NIPT screening to identify maternal cancers.

Following two similar experiments in the US, researchers used data from patients who had consented for their data to be used in research and looked for indications that cancers could be present. The experiment was a success, and scientists were able to identify instances of cancer, allowing clinicians to diagnose cases much more quickly.

As with the US experiments, all data used in the study were pseudonymised, meaning that no personal information was provided, and the researchers could not know the identity of any patients. The scientific method relied on experiments being peer-reviewed, meaning that the anonymous data of genetic material underlying the experiment had to be stored for a period of time. This in turn led some commentators to claim that personal information had been mishandled.

In misinformation circulating between the media and overseas governments, BGI Group was described, fancifully, as a company “linked to the Chinese military”, and it was claimed that personal information was held in China’s GeneBank. Accusations were made that China was “stealing intimate data”. These claims were strongly denied by the company.

The Human Genome Organisation (HUGO), reflecting on lessons from the pandemic, highlighted the necessity of sharing sequences on open platforms.

In an open letter to the Human Genomics journal, the organisation wrote, “We should also look forward to the time when the pandemic has passed, and we are left with vast amounts of samples and data: these should be made available under conditions of global ethics and a model that advances genomics research equitably”.

Genomic science has already developed the ethical frameworks and information security processes that make HUGO’s vision of open genomic evidence feasible. For it to be made a reality, society must learn to understand and to trust those standards and processes.

Further advances in genomic science and its application in health care rely on our continued consent, individually and as a global society, to participate in research.

To maintain that consent, we must be able to trust scientists to remain above politics.

 

Lord St John of Bletso is a Crossbench peer. 

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Policy@Manchester at Party Conference 2021


Join [email protected] at this year’s Labour and Conservative party conferences for an exciting programme of fringe events.

[email protected] has been running its conference programme for several years, and consistently secures leading speakers from academia, industry, civil society and politics. [email protected] puts a spotlight on the pressing matters facing policymakers today, making its fringe event programme an unmissable part of party conference season. This year’s programme at the Labour and Conservative Party Conferences is no different with panels covering sustainability, health, innovation and inequalities.

We look forward to welcoming you again to our packed party conference agenda. Our events will be in person with no conference pass required, and the majority will be live-streamed, so either join us for a coffee or watch us on your screen. For further information contact [email protected]

Labour Party Conference:

How can we seize the opportunities of the digital revolution to deliver better work for those in creative industries?

In Partnership with Social Market Foundation
Tuesday 28 September, 9.30 – 10.30am
Ashdown 1, Holiday Inn Brighton Seafront, 137 Kings Rd, Brighton BN1 2JF

The creative sector is a hive of inequality, with the highest average wage being that of a film director at £57,859 per year while the average wage of a fashion designer is £20,716. The sector is also finely balanced between those who are already highly digitally skilled, and thus able to adapt short and long-term digital changes to work, and those who are not. As the Labour Party works on its roadmap for a better future for Britain, how can the Party make sure it delivers better jobs and better work for those in the creative industries while preparing for a digital future?

  • James Kirkup, Director, Social Market Foundation (Chair)
  • Dr Anita Greenhill, Senior Lecturer, The University of Manchester
  • Alison McGovern MP, Shadow Minister for Cultural Industries & Sport
  • Helen Milner OBE, Group Chief Executive, Good Things Foundation
  • Jamie Njoku-Goodwin, CEO, UK Music
Holding our Breath? How to clean up our cities’ air

In Partnership with Centre for Cities
Tuesday 28 September, 11.00 – 12.00
Victoria Terrace, Grand Brighton, 97-99 Kings Rd, Brighton BN1 2FW

Please note this event will not be live streamed and will accept in person attendance only.

This event, in partnership with Centre for Cities, will look at some of the latest research in [email protected]’s publication On Air Quality and the economic effects of air pollution. Exposure to air pollution has acute impacts on human health, productivity and widening societal inequalities. It is a national problem with profound local implications. This panel will discuss how a place-based approach can be effective for building solutions to the air pollution problem that are effective, enduring, and equitable.

  • Andrew Carter, Chief Executive, Centre for Cities (Chair)
  • Polly Billington, Chief Executive, UK100
  • Prof Sheena Cruickshank, Immunologist and Professor of Biomedical Sciences and Public Engagement, The University of Manchester
  • Ruth Jones MP, Shadow Minister for Natural Environment & Air Quality
  • Cllr Ian Ward, Leader, Birmingham City Council

 

The Child of the North: COVID-19 Update

In Partnership with the Northern Health Science Alliance (NHSA) and N8
Date: Tuesday 28 September, 11.00 – 12.00, Ashdown 1, Holiday Inn Brighton Seafront, 137 Kings Rd, Brighton BN1 2JF

Pre-pandemic child health in the North of England was poor and deteriorating. Since the pandemic these trends have worsened further. This panel discussion will focus on how to tackle the inequalities that exist for children born in the North of England to create a brighter future and look at initial findings from the NHSA and N8’s, Child of the North report which analyses the disproportionate outcomes for those born in the North of England in areas such as life expectancy, ill health, education and economic prospects.

  • Rachel Wearmouth, Senior Political Correspondent, Daily Mirror (Chair)
  • Tulip Siddiq MP, Shadow Minister (Education) and MP for Hampstead and Kilburn
  • Hannah Davies, Health Inequalities Lead, Northern Health Science Alliance
  • Prof David Taylor-Robinson, Professor of Public Health and Policy, University of Liverpool
What should an effective green recovery look like?

Tuesday 28 September, 12.30 – 13.45
Ashdown 1, Holiday Inn Brighton Seafront, 137 Kings Rd, Brighton BN1 2JF

Strong domestic climate action is vital in demonstrating international leadership in the build up to COP26. So what does the UK need to do to ensure it retains international credibility, and helps manufacturing businesses to decarbonise, and how can this deliver a green economy that works for all?

  • Leo Hickman, Director and Editor, Carbon Brief (Chair)
  • Fleur Anderson MP, Shadow Minister (Cabinet Office)
  • Rosa Hodgkin, Researcher, Institute for Government
  • Andrew Carter, Chief Executive, Centre for Cities
  • Professor Jonatan Pinkse, Professor of Strategy, Innovation and Entrepreneurship, The University of Manchester

 

Conservative Party Conference:

How to harness the digital healthcare revolution to tackle health inequalities

In Partnership with Social Market Foundation
Monday 4 October, 10am – 11am
Private Rooms 19 & 20, Radisson Edwardian Hotel, Free Trade Hall, Peter St, Manchester M2 5GP

From prevention to diagnosis and treatment, healthcare is experiencing a digital revolution. But digital inequalities risk stalling the benefits health tech can bring. Join our panel of experts to discuss how innovations in digital healthcare can be harnessed to help reduce inequalities and deliver quality healthcare for all.

  • James Kirkup, Director, Social Market Foundation (Chair)
  • Tim Barker, CEO, Kooth
  • George Freeman MP, Minister for Science, Research and Innovation
  • Lord Bethell of Romford
  • Helen Milner OBE, Group Chief Executive, Good Things Foundation
  • Professor Arpana Verma, Clinical Professor of Public Health and Epidemiology, The University of Manchester
How can we accelerate the UK’s green recovery?

Monday 4 October, 10am – 11am
Upper Hall, Friends Meeting House, 6 Mount St, Manchester M2 5NS

Strong domestic climate action will provide the basis for the UK Government’s vital international leadership in the lead up to COP26. What does the UK need to do to ensure it retains its international standing and leadership when it comes to building back better?

  • Tom Sasse, Associate Director, Institute for Government (Chair)
  • Andrew Carter, Chief Executive, Centre for Cities
  • Matthew Fell, Chief Policy Director, CBI
  • Professor Jonatan Pinkse, Professor of Strategy, Innovation, and Entrepreneurship, The University of Manchester
  • Further Speakers to be confirmed
     
Can place based partnerships drive innovation and growth across a city region and provide the key to levelling up?

Monday 4 October, 11.30 – 13.00 (including a sandwich lunch) 
Upper Hall, Friends Meeting House, 6 Mount St, Manchester M2 5NS

Innovation GM is a key pillar of the city-region’s economic vision, with a plan to deliver a fairer, greener and more productive Greater Manchester economy beyond the pandemic. Leveraging the success of GM’s existing research and development hubs in global frontier sectors including advanced materials and manufacturing, health innovation, digital and creative and clean growth.
Join us to discuss how a place-based approach involving businesses, academia, science and local government can accelerate the region’s economic vision and deliver on levelling up.

  • David Collins, Northern Editor, The Sunday Times (Chair)
  • Andy Burnham, Mayor of Greater Manchester
  • Jessica Bowles, Director of Strategy, Bruntwood
  • Prof Richard Jones, Professor of Materials, Physics and Innovation Policy, The University of Manchester
  • Joanne Roney OBE, Chief Executive, Manchester City Council
  • Dr Beenish Siddique, CEO/Founder, AEH Innovative Hydrogel
     
Holding our breath? How to clean up our cities’ air

In Partnership with Centre for Cities
Monday 4 October, 13.30 – 14.30
Upper Hall, Friends Meeting House, 6 Mount St, Manchester M2 5NS

This event, in partnership with Centre for Cities, will look at some of the latest research in [email protected]’s publication On Air Quality and the economic effects of air pollution. Exposure to air pollution has acute impacts on human health, productivity and widening societal inequalities. It is a national problem with profound local implications. This panel will discuss how a place-based approach can be effective for building solutions to the air pollution problem that are effective, enduring, and equitable.

  • Andrew Carter, Chief Executive, Centre for Cities (Chair)
  • Prof Sheena Cruickshank, Immunologist and Professor of Biomedical Sciences and Public Engagement, The University of Manchester
  • Roger Evans, Political Advisor, UK100
  • Wayne Fitzgerald, Leader, Peterborough City Council
  • Rebecca Pow MP, Parliamentary Under Secretary of State at the Department for Environment, Food and Rural Affairs
Happy and healthy communities: how can we build health and wellbeing into new home developments that work for everyone?

Monday 4 October, 15.30 – 16.30 followed by networking
Private Rooms 15 & 16, Radisson Edwardian Hotel, Free Trade Hall, Peter St, Manchester M2 5GP

Our Cities are key places. The way that we plan and develop cities needs to be improved so that we can reach carbon targets and improve the health and lives of the people that live within them. What we build now will last for at least 30 years so it is vital that we lock in sustainable features that will remain well past the 2038 and 2050 targets. Join us to discuss how we can meet these challenges and develop happy and healthy communities that work for all.

  • Andrew Carter, Chief Executive, Centre for Cities (Chair)
  • Lord Karan Bilimoria CBE DL, President, CBI
  • Cllr Abi Brown, Leader, Stoke-on-Trent City Council
  • Prof James Evans, Professor of Human Geography, The University of Manchester
  • Gavin Taylor, Regional General Manager, Far East Consortium International Limited (FEC)
The Child of the North, Covid-19 update

In Partnership with the Northern Health Science Alliance (NHSA) and N8
Monday 4 October, 16:00 – 17:00
Upper Hall at the Friends Meeting House, 6 Mount St, Manchester M2 5NS

Pre-pandemic child health in the North of England was poor and deteriorating. Since the pandemic these trends have worsened further. This panel discussion will focus how to tackle the inequalities that exist for children born in the North of England to create a brighter future and look at initial findings from the NHSA and N8’s, Child of the North report which analyses the disproportionate outcomes for those born in the North of England in areas such as life expectancy, ill health, education and economic prospects.

  • Professor Kate Pickett FRSA FFPH, Deputy Director of the Centre for Future Health, University of York (Chair)
  • Damian Green,  MP for Ashford
  • Mary Robinson, MP for Cheadle
  • Dr Luke Munford, Senior Lecturer in Health Economics, University of Manchester
     
Global Britain: championing the voice of British businesses in international trade agreements

Tuesday 5 October, 13:00 – 14:00 
Upper Hall, Friends Meeting House, 6 Mount St, Manchester M2 5NS

Following Brexit, the UK has a golden opportunity to put British businesses first and boost its national economy by re-shaping its approach to trade and investment strategy. Join us to discuss how we can champion the voice of British business and industry in current, and future, international trade and investment negotiations.

  • Maddy Thimont-Jack, Associate Director, Institute for Government
  • Jo Ahmed, Global Employer Services Partner, Deloitte
  • Noreen Burroughes Cesareo FRSA
  • Susana Córdoba, Head of International Trade, GM Chamber of Commerce
  • Chris Southworth, General Secretary, ICC UK
  • Dr Jasem Tarawneh, Lecturer in Commercial and Intellectual Property Law, The University of Manchester
Impact of COVID-19 on the Northern Powerhouse: One year on

Tuesday 5 October, 14.30 – 15.30 
Upper Hall, Friends Meeting House, 6 Mount St, Manchester M2 5NS

Last year, a landmark report from the Northern Health Science Alliance found that 57.7 more people per 100,000 died in the Northern Powerhouse, relative to the rest of England, between March and July 2020. A recent follow-up report, created in partnership with [email protected], has shown disproportionately negative health and economic outcomes throughout the pandemic.

As the Government seeks to ‘level up’ Britain’s cities, counties and regions, it is more important than ever to understand how these impacts have been felt in the Northern Powerhouse and what that means for the challenges and possibilities for productivity, growth and wellbeing in the post-pandemic UK. The University of Manchester’s Dr Luke Munford, author of both reports, will share his findings, alongside insight and analysis from leading policymakers.

  • Clare Fallon, North of England Correspondent, ITN/C4 News (Chair)
  • Dr Luke Munford, Lecturer in Health Economics, The University of Manchester
  • Henri Murison, Director, The Northern Powerhouse Partnership
  • Damian Waters, Regional Director, CBI
  • Further Speakers TBC

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Voters in both Red Wall and Blue Wall united in support for assisted dying


  • First ever poll of Red Wall voters on assisted dying finds 72% of voters in Red Wall seats support legalisation of assisted dying; 9% opposed
  • Support even higher amongst Conservative voters (76%) and Leave voters (75%)
  • Focus groups in Red Wall and Blue Wall seats find overwhelming support for assisted dying

Research undertaken by JL Partners has found that the overwhelming majority of voters in Red Wall seats support assisted dying. The first ever survey of the Red Wall on the subject reveals 72% of people support assisted dying for terminally ill adults of sound mind, compared to just 9% who are opposed to a change in the law. Conservative voters (76%) and Leave voters (75%) are even more likely to support law change.

The research, commissioned by Dignity in Dying, found that 43% of those surveyed had cared for or witnessed a friend or family member who suffered unbearably towards the end of life. A third of respondents said they had cared for a loved one who they would have liked to have had the right to an assisted death.

Focus groups conducted alongside the Red Wall poll found huge similarities between Tory voters in the Red Wall, swing voters in the Blue Wall, and Conservative Party members, where participants were strongly in favour of assisted dying.  Many focus group participants thought assisted dying chimed closely with Conservative values because it represented an issue of personal choice.

The research also found that people were also generally unaware that assisted dying was permitted in parts of the USA and Australia, and nationwide in Canada and New Zealand. When told of these developments, participants found comfort that assisted dying had been legalised in countries similar to the UK, but thought this meant the UK was being left behind, compared to “pioneering” and “ahead of the game” countries where assisted dying was permitted.

Half of those polled felt more positively about assisted dying in the UK due to the legalisation of assisted dying overseas.

The poll also found widespread support for assisted dying to be made available on the NHS if it were to be legalised, with two thirds (67%) agreeing. Focus group participants also strongly agreed with the idea, to ensure that choice is not only available to “the rich and privileged”. This was seen as contrary to the current situation where seeking an assisted death in Switzerland through organisations like Dignitas was an option available only to those with the resources to afford it.

James Johnson of JL Partners, who conducted the research, said:

“Our research found very significant support in the Red Wall for assisted dying, by a margin of 72% supporting and only 9% opposing. In the context of policies I’ve tested over the years, that is a really significant margin – and it’s even larger amongst Conservative voters.

“We also found that voters are persuaded of the effectiveness of the safeguards built into the proposed assisted dying laws, and that ultimately the vast majority of people see this as a matter of personal choice.”

Helen Thomas, 59, is a business-owner who lives in the constituency of Hyndburn, which was won by the Conservatives in 2019. Helen witnessed her daughter Gemma Nuttall, a dental nurse, suffering unbearably from terminal cancer before she died in 2018. Helen said:

“My beautiful daughter was diagnosed with womb cancer while she was pregnant at the age of just 25. The next few weeks, months and years were a blur of surgeries, chemotherapy, remissions and relapses, even trips to Germany on a three-weekly basis for treatments which weren’t available here. But in the end the cancer had spread throughout her body and we were unable to stop it. Gemma died over several days in a hospice and while all efforts were made to keep her comfortable and sedated, she did not go peacefully or quietly.

“My own experiences reflect a major finding of the research: the importance of choice. Gemma did not choose to get cancer, did not choose to die, and most certainly would not have chosen to die in the way she did, had the option of assisted dying been available to her. We need a new law so that dying people like my daughter need not suffer in their final days of life, against their wishes.”

Tom Davies, Director of Campaigns and Communications at Dignity in Dying, said:

“We’ve long known that assisted dying is a policy that unites the country, across all demographics and political leanings. This is the first time that voters in the all-important Red Wall seats have been asked for their views and the results are clear: an overwhelming majority support a change in the law to permit dying adults of sound mind to have choice and control over their deaths.

“With the House of Lords, the Scottish Parliament and the States of Jersey due to debate assisted dying proposals in the coming weeks and months, and the recent news that the BMA has dropped its longstanding opposition to assisted dying, there has never been a greater likelihood of assisted dying being legalised in the UK. Evidence from overseas demonstrates that assisted dying laws are safe, compassionate and robust; this research demonstrates that they would be incredibly popular too.”



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The global HIV response cannot afford for the UK to step back now


4 min read

By making such significant cuts at this crucial time for the HIV response, we’re jeopardizing efforts to achieve the UN’s targets and are leaving marginalised communities behind.

Whilst other UN members are stepping up their commitments to the HIV response and the devastating impact caused by Covid-19, I am concerned that the UK is stepping away. By cutting the aid budget by a third, we risk jeopardising decades of hard-won progress in the fight to end AIDS.

To mark the start of the UN General Assembly, the APPG on HIV, STOPAIDS and Frontline AIDS have released a report that highlights the devastating impact that the cuts are having on the HIV response.

We conducted this inquiry over the summer and the report’s findings are indeed sobering. This year the UK has cut funding to key agencies like UNAIDS, Unitaid and UNFPA by over 80 per cent respectively; cut global health research and development (R&D) spending in half; and effectively wiped out what remained of the UK’s bilateral funding going directly to HIV civil society and community-led organisations.

These cuts create the perfect storm for a resurgence of HIV transmissions and AIDS related deaths

From reduced access to contraceptives to driving more people into poverty – the report explores how these cuts create the perfect storm for a resurgence of HIV transmissions and AIDS related deaths. These cuts will undoubtedly affect the international community’s ability to realise the UN’s HIV targets and advance UK development priorities, including pandemic preparedness, health system strengthening and ending preventable deaths.

What’s more, the ODA cuts also directly contradict the UK government’s ambition to become a “science superpower” with R&D funding for global health and HIV drastically reducing. With more than 4,000 people still becoming infected with HIV every day, and nearly 2,000 dying every day from AIDS-related illnesses, HIV and AIDS R&D is clearly an area where more rapid progress is desperately needed.

I am proud of the UK’s history as a global leader in the HIV response and have seen directly how UK Aid funded projects have transformed HIV treatment and prevention efforts. We have been beginning to see huge progress in the UK in reaching the domestic target of no new HIV transmissions, and this important target could be within reach for the rest of the world too.

The global HIV response cannot afford for the UK to step back now from its critical leadership role, particularly under the incredible strain from the Covid-19 pandemic, which looks set to roll back a decade of progress.

Earlier this month I chaired a meeting between UK parliamentarians and Winnie Byanyima who leads the UN’s work on HIV. This year UNAIDS rallied world leaders to adopt the “Political Declaration” which proposes bold action to get the HIV response back on track. I was encouraged that the UK government pushed for a strong Declaration and stood up for the rights of marginalised communities at the UN High Level Meeting on HIV.

But unfortunately, there’s a disconnect between their words and actions. By making such significant cuts at such a crucial time for the HIV response, we’re jeopardizing efforts to achieve the UN’s targets and are leaving marginalised communities behind.

Our report highlights that it is not too late to get the HIV response back on track and advance – not jeopardise – the UK government’s development priorities. The new Foreign Secretary, Liz Truss, has the opportunity to get the response back on track. Some of her predecessors have shown what UK leadership can achieve for the HIV response. I hope she’ll step up to the mantle, countless lives are depending on it.

Top of her agenda should be working with her government colleague to ensure that the upcoming Spending Review saves lives. Our report makes the case for why the UK government should allocate supplementary funds to bilateral and multilateral organisations working on the HIV response who have had their funding cut, and to increase funding for global health R&D.

At this time of global health crisis, the only moral and rational step is for the UK government to lead by example. This means maintaining UK leadership in the global HIV response politically and financially and returning to the global commitment to spend 0.7 per cent of GNI on overseas development assistance as quickly as possible.

Renewed leadership from the UK government will help us regain lost ground caused by Covid-19 and get efforts to end AIDS back on track.

 

Baroness Barker is a Liberal Democrat peer. 

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GPs are struggling to cope with growing mental health crisis


5 min read

Mental health care and general practice are in deeper crisis than ever before. We need a political solution.

Amid claims that GPs are “hiding” from patients behind telephone triage and e-consultations, I feel compelled to show you a glimpse of “The Other Pandemic”. Falling squarely at our feet overspilling our appointments: mental health.

In March a survey of over 4,000 people in the UK established that “there is a genuine, wide and profound mental health crisis.” The appointment list for my day’s surgery supports the assertion.

GPs have always managed the majority of mental ill-health in the UK. One surprising positive to come from the pandemic, is that talking about mental health is losing its stigma.

At the start of the pandemic, even the worst affected tried to hang on, to give us the time and space we needed to deal with Covid. Those who did come were already in crisis, desperate, having held their breath for too long.

After the first lockdown the floodgates opened, and over a year and a half into a pandemic that seems destined to continue indefinitely, every day brings more new patients.

Mental health services were already creaking pre-pandemic. Community mental health teams provide good, if slightly slower, access to talking therapies for those too ill to access the voluntary sector service, and a crisis team that can react to offer support in a timely way to patients at risk of suicide. 

Even children who clearly meet the referral criteria are waiting months to be seen

But what they can’t offer, is medication. That needs a psychiatrist; the adult psychiatrist for my particular area has been unfilled for months. If I think patients need more than an anti-depressant, or an adjustment of anti-psychotics, then we must wait until the situation becomes urgent enough to warrant a review by the psychiatrist from a neighbouring area.

With clear evidence that severe mental illness is best nipped in the bud, preventing both long term illness and recurrence, that can’t possibly be an adequate service for our patients.

Child mental health services fare no better. Child and Adolescent Mental Health Services (CAMHS) have a reputation for being impossible to access at the best of times. They are the only service GPs refer to who routinely “bounce” referrals back, without even seeing or assessing the patient. With disruption to schooling, uncertainty about exam formats, isolation from friends, fear of illness and loss of loved ones, the mental health of our children is suffering, and the service has been overwhelmed.

Even those children who clearly meet the referral criteria are waiting months to be seen. As a GP there is little I can offer here, except monitoring and general support. 

I find myself seeing a child and her clinically vulnerable parent monthly, tracking her increasing anxiety, her flattening mood, the total insomnia worsening to the point of hallucinations. A change that means I can write a letter to expedite the appointment, and six weeks or so later, an assessment happens. I continue to check in with her while she waits again, this time for therapy.

I know just enough about this highly specialised area to be aware that my inexpert input could cause more harm than good; regularly opening a box of unhappiness she may have naturally put a lid on, without being able to help her make sense of the contents, balanced against the risk of not knowing whether she is deteriorating, or how deep that deterioration has gone.

Other regulars include a small cohort of new mums, mostly presenting too late after the birth for the narrow referral window of our perinatal mental health service. Isolation and lack of support has hit hard at a time when sleep deprivation, hormones, traumatic experiences, pain and disillusionment coincide to create a perfect psychological storm. I do my best, but notice that those who can afford private therapy seem to recover faster and more fully.

Another, larger cohort, are the patients with health anxiety. Something that has affected almost all of us to some extent, during the biggest health crisis of our time.

Amongst the onslaught of unmet need, we must sift through those whose anxieties about their health are irrational, and identity those who may have been sitting on a serious physical problem for too long. Both need addressing and often both can occur within the same patient. With delays in secondary care diagnostics, and now a national shortage of blood test tubes, we are working in a minefield.

Working at this intensity, among so much distress and without an end in sight, is starting to take its toll on our profession. In April mental health service NHS Practitioner Health announced they were taking 22 per cent more self-referrals from GPs than pre-Covid – myself included.

Mental health care and general practice are in deeper crisis than ever before, and this needs a political solution. There is an opportunity here to open a conversation and with investment, to create something outstanding. We just need to demand it – please write to your MP to do this.

In the meantime, keep trying if you need to see us, and remember that GPs are human too, so please be kind.

 

Dr Louise Hyde is a GP and member of the Doctors’ Association U.K.

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We must protect vulnerable and pregnant migrant women wrongly being charged thousands of pounds for NHS maternity care


4 min read

Our advice lines are full of terrified women, scared to go to antenatal appointments in case they are charged, even if they should be exempt.

Soman Noori, a 26-year-old Afghani asylum seeker, gave birth to a baby girl at 30,000 ft while on an evacuation flight from Kabul to Birmingham last month. There was no doctor aboard, so the crew delivered the child in an airline seat.

She was lucky – her care was free.

New research from Maternity Action has found that many other pregnant asylum seekers and vulnerable migrant women are being charged thousands of pounds for NHS maternity care – even though the law says they should be exempt.

Under rules first introduced in 2004 and revised in 2017, NHS Trusts have a legal duty to issue financial charges, including for vital maternity care, to those “not normally resident in the UK”.

There are various exemptions intended to protect the most vulnerable pregnant women and new mothers – including asylum-seekers and those who are destitute.

But our new research report, Breach of Trust, has found that NHS Trusts are routinely failing to apply these legal safeguards correctly. As a result, vulnerable women are being wrongly issued with invoices for thousands of pounds.

Some Trusts are taking an extremely aggressive approach to payment, including using debt collection agencies to pursue unpaid charges

It’s hard to overstate the impact of maternity charging on the health of mothers and their babies. Our advice lines are full of terrified women, scared to go to antenatal appointments in case they are charged, even if they should be exempt.

This makes it much harder for midwives to deliver essential care, which is particularly worrying as this group is at higher risk of health complications.

These are women like Ann, who was undocumented at the time of her daughter’s birth, but now has leave to remain in the UK. She is currently challenging her charges on the grounds of destitution. She said:

“I didn’t attend any antenatal appointments because I didn’t know if I would have to pay.

When I was 28 weeks pregnant, I experienced severe pain and went to hospital. My daughter was born but only lived a few hours.

While the baby was blue in my hands, the lady from the overseas office came and said, “If you sleep on our bed, we’re going to charge you.”

Our report sets out case studies of errors in assessing immigration status which resulted in women entitled to free NHS care being wrongly invoiced; of women being charged when they are covered by an exemption; and of NHS Trusts aggressively chasing payments from women who are clearly destitute and so have no means to pay.

Department of Health & Social Care guidance supports debt write-offs for women who are destitute. However, our report reveals some Trusts are taking an extremely aggressive approach to payment, including using debt collection agencies to pursue unpaid charges.

Maternity Action is urgently seeking changes in the practice of Trusts to reduce the negative impact of charging on migrant women’s access to maternity care.

We’ve worked with the Royal College of Midwives to develop guidance to assist NHS Trusts to comply with the law, and we’d urge MPs to engage with their local Trusts to ensure that all NHS England Trusts adopt this guidance.

We’re also calling for Trusts to immediately undertake an audit of Overseas Visitor Manager files of women charged for maternity care to determine compliance with regulations and guidance, Trust policy and the Trust’s legal obligation to reduce health inequalities; and undertake swift remedial action where shortfalls are identified. 

Finally, we’re calling on Trusts to release public reports on progress towards implementation of the guidance.

We must protect those who are exempt from NHS maternity charging – the lives of our most vulnerable mothers and babies depend on it.

 

Ros Bragg is the director of Maternity Action.

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Low tax conservatism is dead, but fiscal conservatism is back in fashion


Prime Minister Boris Johnson announced a 1.25 per cent increase to National Insurance this week for a ‘Health and Social Care Levy’ [Photo credit: Alamy]

5 min read

The Prime Minister and Chancellor made huge policy decisions this week, raising taxes to spend more on the NHS and protect the assets of those facing high social care costs.

But the tsunami of announcements can also hide the biggest decisions they’ve taken: to bury the idea of low tax conservatism but resurrect, after a pandemic-induced lull, it’s (not closely related) cousin – fiscal conservatism.  

The final nail in the low tax coffin was this week’s £14bn-a-year National Insurance-based tax rise. Being prepared to face up to the tax consequences of announcing big permanent increases in the size of the state deserves credit. As does the fact the government listened to the many critics of a National Insurance rise, and tried to address some of its fairness problems by extending it to working pensioners and dividend income.

But despite these welcome changes, the new Health and Social Care Levy is still deeply flawed. It falls disproportionately on the working age population. A typical 25-year-old today will pay an extra £12,600 over their working lives from the employee part of the tax rise alone, compared to nothing for most pensioners (only one-in-six pensioner households have earnings).

And because the Levy is focused on earnings, other sources of income are exempt – including rental income that tends to go to higher income households. Of the 1.9 million buy-to-let landlords, two-thirds are in the richest fifth of households. You’d rather be a landlord than a working tenant.  

To see the big picture of where Boris Johnson has taken the Conservative Party, under the combined pressure of the pandemic and healthcare spending pressures, we need to combine the Health and Social Care Levy with the Corporation and Income Tax rises announced in the March Budget. Together that takes you to £36bn of tax rises – that totals over 1.6 per cent of national income, more than in any Budget since at least the mid-1970s.

Only a fifth (£5.4bn) of the new spending in England over the next three years will go on social care

Those tax rises have supported more spending. Despite the headlines about social care, the priority for spending has actually been other Department of Health and Social Care priorities: the NHS and dealing with the pandemic. Only a fifth (£5.4bn) of the new spending in England over the next three years will go on social care.

That funding has been set aside to improving the means test through which people are asked to contribute to the costs of their social care. This is a welcome and overdue socialisation of the risk we all face of high care costs. But dangers remain.

The smaller than expected social care package means the government has prioritised changing who pays for care, rather than directly addressing the growing problem that far too few people are getting the care they need in the first place. More broadly, the policy may not live up to its marketing, with those in modest homes with few financial assets still needing to put a charge on their homes if they need significant residential care.

The cap will offer more support to families in the south, who will see a greater share of their assets protected if they hit the cap, and are more likely to hit the cap given higher care costs. In contrast, it is the increased generosity of the means-test that will have relatively more impact in lower wealth regions. In the north-east, only 29 per cent of individuals aged 70-plus have sufficient assets that they would receive no state support.

The return of fiscal conservatism to the driving seat in government can be seen in the Chancellor’s confirmation of the overall spending totals for the forthcoming Spending Review. These totals make clear the Chancellor’s intention to fund any further Covid-19 related costs (such as education catch-up funding) from tax rises or spending cuts elsewhere, rather than extra borrowing: a clear change in fiscal approach from the pandemic so far.

More broadly, while health and care spending will rise, these totals also confirm that the day-to-day spending power of unprotected departments, such as local government and prisons, will be cut further in 2022-23 and will not rise significantly in the coming years remaining well below 2009-10 levels (in real terms per capita).

This continues the pattern of decision making of recent decades, leaving Britain set for an NHS-dominated state. By 2024-25, the Department of Health and Social Care will account for around 40 per cent of all day-to-day government spending, up from 28 per cent two decades earlier.

The Treasury has banked £5bn from ditching the Triple Lock, and will likely receive a further £25bn from the improved economic forecasts from the Office for Budget Responsibility next month. While the social care announcement may define the Prime Minister, how this upcoming fiscal windfall is spent may help to define the Chancellor’s legacy.

While low tax conservatism may be dead, fiscal conservatism in the Treasury is alive, well and back calling the shots after the big borrowing of the pandemic.

 

Torsten Bell is chief executive of the Resolution Foundation

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A new hope for allergy sufferers


September 2018: Nadim and Tanya Ednan-Laperouse, with their son Alex, outside West London Coroners Court following the conclusion of the inquest into the death of Natasha Ednan-Laperouse, who died aged 15 in July 2016 | Alamy

7 min read

Five years on from Natasha Ednan-Laperouse’s death after an allergic reaction, ‘Natasha’s Law’ is finally coming into effect next month. Georgina Bailey reports on the family’s fight to make life safer for sufferers and how allergy policy is changing

“I want to do something that makes a difference.” Tanya Ednan-Laperouse was surprised when her teenage daughter, Natasha, told her she wanted to be a human rights lawyer. Natasha was a talented artist: she had previously thought that would be her career.

Tanya and Natasha’s father, Nadim, describe an empathetic young girl, bubbly and full of laughter. Bullied as a young child, partly due to the life-threatening allergies that made her stick out and the asthma that kept her off school, she always wanted to stick up for the underdog, they say.

Tashi, as her family call her, didn’t get to live out her dream herself – however her family have taken up the mantle to ensure that other families don’t experience the same tragedy.

On 17 July 2016, 15-year-old Natasha had an allergic reaction to the sesame seeds in a Pret a Manger baguette while flying to Nice with her father and her best friend Bethany. On the edge of tears, Nadim recalls in detail administering two epi-pens to his daughter in the airplane bathroom, before watching her suffocate on the floor as he realised the epi-pens hadn’t worked. Natasha, whose first anaphylactic reaction happened at six months old, then had multiple cardiac arrests, before dying in a French hospital.

42 per cent of parents of children with allergies met the clinical cut-off for post-traumatic stress symptoms

Natasha and her family were used to managing Natasha’s severe allergies to milk, eggs and nuts with extreme caution. “You can’t control everything outside the home, it’s impossible … but you just do what you can and keep really vigilant as much as possible,” says Tanya, “It’s really hard for families; it’s exhausting because they cannot relax for one minute when they’re out and about.” Recent research from the University of East Anglia found that 42 per cent of parents of children with allergies met the clinical cut-off for post-traumatic stress symptoms (PTSS).

The Ednan-Laperouse family: Alex, Natasha, Tanya and Nadim

“There were lots of things we couldn’t eat, or places we couldn’t go because the risk of cross-contamination was too high,” Nadim adds. He recalls Natasha checking the packaging of the olive tapenade, red pepper and artichoke baguette with him in the airport – there was nothing on there to suggest that hundreds of sesame seeds were baked into the dough, and they were reassured by this. 

A 2018 inquest concluded that Pret a Manger had utilised a loophole in the Food Information Regulations, and did not have a proper system for monitoring reports of allergic reactions. Regulation 5 was designed so small local shops who assembled food on site wouldn’t have to provide allergen labels for pre-packed for direct sale food. However, in the case of Pret, more than 200 million items for sale were “assembled” in “local kitchens … in large parts from items made in factory style outlets to Pret specifications”, the coroner found.

On 1 October, “Natasha’s Law” will come into effect and close this loophole after a two-year transition period. From next month, all prepacked food for sale will need to display a full list of ingredients, with the 14 major allergens highlighted.

While Tanya and Nadim say they think their daughter would be “very proud” of their campaigning so far, this is only the beginning of their work to make life safer for the seven million people in the UK with serious allergies. 

“Soon after the inquest we started getting letters from the public, and lots of emails,” Tanya says. “We always lived in a bubble, knowing there were some allergies out there but [thinking] Natasha was very unusual. But actually, that wasn’t the case. Many – especially young – people had food allergies, and were living exactly our lives. And what happened to us was their worst fear.”

Jon Cruddas, MP for Dagenham and Rainham and chair of the APPG on Allergy, is one of those who supported the Ednan-Laperouse family early on, along with their local MP Andy Slaughter. Like them, he is the parent of a child with allergies, and also believes the problem is much wider than food labelling. “For years, we’ve been asking the government about who is responsible for allergies in the UK,” Cruddas says. “You ask parliamentary questions, and you get responses that basically say no one is.” 

Currently, food labelling sits under Defra and the Foods Standards Agency, while health issues are managed by the Department for Health and Social Care and clinical commissioning groups. Cruddas says that as a result, allergy policy often falls between the gaps – meanwhile, there has been a 38 per cent increase in admissions to A&E for anaphylaxis in the last nine years, and the UK has one of the worst set of outcomes for treatments of all allergies in Europe. 

To this end, the Ednan-Laperouses are now campaigning for the creation of an allergy tsar, through their charity the Natasha Allergy Research Foundation. They believe a tsar would act as a champion for people with allergies to ensure they receive appropriate support and joined-up health care, and their petition on Parliament’s website currently has 15,000 signatures.

Like many families, the Ednan-Laperouses struggled to get appropriate diagnoses and professional support for Natasha, despite multiple life-threatening reactions as a baby and toddler. “Once they lost her blood sample for the third time, I just gave up,” Tanya recalls. 

Cruddas describes similar experiences across the “allergy community,” with a “postcode lottery” for services, a shortage of specialists, and poor GP training on allergies. 

The APPG on Allergy will therefore be unveiling a new strategy document this autumn, with proposals for the Department for Health and Social Care on how the medical management of allergies can be improved and public awareness raised. 

“Whether it’s Labour, the Coalition, or the Conservatives, we’ve never really managed to get government responsibility, ministerial responsibilities, civil service responsibility, and a strategy going forward,” Cruddas says. He points to a series of reports from the Royal College of Physicians on allergy services starting in 2003, plus a House of Lords Science and Technology Committee report on allergy from 2007. “You look back on it now, and a lot of the same issues will be raised in our follow up report, but the situation will be even worse.” He gives huge credit to the Ednan-Laperouses and other families who have experienced tragic losses for raising awareness. 

I couldn’t say to Natasha, look, you’ve got allergies now, but maybe one day, they might find something that’s going to help you.

Meanwhile, the Natasha Allergy Research Foundation has been raising money to fund medical research into allergies at the University of Southampton, including bursaries for students and PhD candidates, and MSc Allergy bursaries for health professionals at any stage of their career. 

“For us as a family, there was no hope,” Tanya says of the dearth of medical research into allergies until now. “I couldn’t say to Natasha, look, you’ve got allergies now, but maybe one day, they might find something that’s going to help you. I couldn’t ever say that to her.” 

Now, they’re working with Professor Sir Stephen Holgate from the University of Southampton, who is 70 years old and believes that allergies could be cured in his lifetime, and the family are planning more activities this autumn to mark the introduction of Natasha’s Law.

Tanya concludes: “That her experience has really opened up such a dialogue and also created change would be so meaningful to Natasha… She was fighter, she wasn’t scared…  She would never want us to give up.”

 

Photos belong to the Ednan-Laperouse family

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