The NHS European Office used Rare Disease Day (28 February) to warn that UK patients with rare diseases could soon be pushed to the back of a queue if the UK is ejected from important European networks that combat these illnesses. It called on the Government to defend the UK’s major role in these 24 ‘European Reference Networks’ (ERNs) during Brexit negotiations and to try to prevent its ejection.
ERNs are the most tangible and advanced form of European cross-border healthcare and six of them are UK-led from within some 40 NHS hospitals involved in these Networks. They allow leading specialist care providers across Europe to collaborate and rapidly share the most cutting-edge information on rare diseases, such as some neuromuscular and auto-immune conditions.
The NHS European Office – which is part of the NHS Confederation – is warning that leaving these ERNs would cause delays in access to innovative treatment for many UK patients with rare diseases, and reduce opportunities to take part in potentially life-saving clinical trials. There is also a real risk that talented UK clinicians and scientists would be tempted to migrate abroad.
Furthermore, flagship initiatives could be affected, including the 100,000 Genomes Project, launched by the Prime Minister in 2012, which aims to better understand how DNA can predict and prevent disease.
The TUC has published an analysis that provides a regional breakdown of where NHS and adult social care services are most reliant on workers from the EU. The TUC says that the government’s refusal to confirm that EU workers can stay is putting NHS patients at risk, along with older and disabled people who use social care.
The regions where services would suffer most if EU workers are no longer allowed to remain after Brexit are London (13% care workers and 9.8% NHS workers are EU migrants), the South East (10% care workers and 6.1% NHS workers), and the East of England (8% care workers and 6.0% NHS workers).
TUC General Secretary Frances O’Grady said: “The government is creating appalling uncertainty for thousands of NHS workers and care workers. It’s a terrible way to treat dedicated public servants. And if Brexit means they have to leave, our health and social care services will struggle to cope. The prime minister should guarantee EU citizens living and working in Britain the right to remain in the UK – and she should do it now, ahead of negotiations. It’s the right thing to do. And it will regain some of the goodwill Britain needs to negotiate the best possible Brexit deal.”
A new survey by the British Medical Association has found that two thirds of people across the UK (65 per cent) support a ‘soft’ opt-out organ donation system. The survey, which questioned 2011 members of the public, also found that while two out of three people (66%) want to donate their organs at death only a third (39%) are signed up to the organ donation register.
Currently England, Northern Ireland and Scotland have an opt-in organ donation system where a person has to register their consent to donate their organs in the event of their death. Under an opt-out system, which has already been introduced in Wales, there would be a presumption in favour of consent for organ donation unless a person had registered an objection in advance.
If an objection had not been registered, family members would still be given the opportunity to confirm whether the individual had any unregistered objection, as an extra safeguard, before any procedures went ahead. The BMA has long advocated a ‘soft’ opt-out system with safeguards for organ donation and continues to believe this is the best option for the UK to reduce the shortage of organs and save lives.
New figures, released in January, reveal the devastating impact of stigma faced by those of us with a mental health problem. Results from the biggest UK wide survey into the impact of mental health stigma showed that almost two fifths (38%) of respondents had been negatively treated as a result of their mental health problem – potentially affecting millions nationwide. The independent public poll was carried out across a sample of 2,000 adults living with a range of mental health problems. 16% didn’t know or preferred not to say whether or not they had been negatively treated while fewer than half (46%) said they had not.
Of those who had experienced stigma and discrimination:
The findings were released on Time to Talk Day, a nation-wide push to get people talking more openly about mental health, collectively, on a day when thousands of people, including celebrities; politicians; the Prime Minister; high street organisations and schools, will be doing the same. Time to Talk Day is organised by Time to Change, the campaign for England that aims to change how we all think and act about mental health problems, led by the charities Mind and Rethink Mental Illness. For more information about Time to Talk Day visit http://www.time-to-change.org.uk/timetotalkday