UK sickle cell patients ‘get worse care than sufferers of similar disorders’

People living with sickle cell disease face substandard care as its treatment significantly lags behind advances relating to other genetic disorders such as cystic fibrosis, a report has found.The study, commissioned by the NHS Race and Health Observatory and carried out by researchers at Imperial College London, analysed various measures of care for sickle cell disease between 2010 and 2024, including clinical trials, approved drugs and reviews of existing studies.The findings indicated that sickle cell care across the UK does not have parity with other genetic disorders, such as cystic fibrosis, with there being only 0.5 specialist nurses per 100 patients for sickle cell, compared with two per 100 for cystic fibrosis.The report also found that there is 2

Scottish government faces legal action over failure to implement biological sex ruling

The Scottish government has been given a deadline to implement the UK supreme court’s ruling on biological sex across all public bodies or face further legal challenges.Sex Matters, the UK-wide gender-critical campaign group, has threatened legal action in 14 days if ministers continue “intolerable” delays to new policies and guidance required by April’s landmark ruling that the legal definition of a woman in the Equality Act 2010 does not include transgender women who hold gender recognition certificates.The move reflects ongoing frustration among gender-critical campaign groups at what For Women Scotland, who brought the supreme court case, described as “extraordinary pushback” since the unanimous judgment.Politicians, LGBT+ rights groups and prominent supporters have raised concerns that the ruling could result in the erosion of rights, privacy and dignity of trans people across the UK.These fears were increased after equality watchdog the Equality and Human Rights Commission (EHRC) brought out interim advice soon after the judgment which, they said, amounted to a blanket ban on trans people using toilets of their lived gender, which many in the community said effectively excluded them from public spaces

Pepper spray use in youth prisons irresponsible amid racial disparities, watchdog warns

The rollout of synthetic pepper spray for use to incapacitate jailed children is “wholly irresponsible” while black and minority prisoners are more likely to be subjected to force than white inmates, a watchdog has said.Elisabeth Davies, the national chair of the Independent Monitoring Boards, whose members operate in every prison in England and Wales, said the justice secretary, Shabana Mahmood, should pause the use of Pava spray in youth offending institutions (YOIs) until ministers had addressed the disproportionate use of force on minority prisoners.“There is clear racial disproportionality when it comes to the use of force,” she told the Guardian. “It is therefore, I think, wholly irresponsible to expand use-of-force measures before disproportionality issues are addressed.”Mahmood authorised the rollout of Pava across YOIs in England and Wales in April amid growing demands from the Prison Officers’ Association (POA) to protect staff from attacks

Ondine Sherwood obituary

My friend Ondine Sherwood, who has died from lung cancer aged 65, was one of the earliest campaigners for the recognition of Long Covid. Having failed to recover fully from Covid-19 in March 2020, she discovered that others were suffering similarly and GPs did not seem to know how to diagnose them. Ondine rapidly became the main spokesperson for the patient-created term “Long Covid”. She founded the group Long Covid SOS that June and secured charitable status and trustees.Ondine lobbied politicians, doctors and civil servants for recognition of the illness

The debate over assisted dying and palliative care | Letters

I do not disagree with Gordon Brown that palliative care should be better funded, but to present palliative care as the alternative to assisted dying is to present a false equivalence, since the principles behind the two are quite different (MPs have personal beliefs, but also solemn duties: that’s why they must reject the assisted dying bill this week, 16 June).The principle behind the entitlement to good palliative care is that one should be entitled to good medical care – in this instance, as death approaches. The principle behind the right to an assisted death is that one should be entitled to determine the time and manner of one’s passing.If one were always to prioritise the right to good medical care above the right to have control over one’s death, it is unlikely that assisted dying would ever be legalised, as there will always be some medical care for somebody that could be better funded. But that is to choose to prioritise one principle over another

NHS nurse ordered to remove ‘antisemitic’ watermelon video call background launches legal action

A senior NHS nurse who says he was ordered to remove a background on his video calls that showed a fruit bowl containing a watermelon because it could be perceived as antisemitic has launched legal action against his employer.Ahmad Baker, who is British-Palestinian and works at Whipps Cross hospital, north London, is one of three medical staff claiming Barts Health NHS trust’s ban on staff displaying symbols perceived as politically or nationally affiliated is disproportionate and discriminatory. Watermelons became symbols of Palestine amid censorship of the Palestinian flag because of its similar colours.Barts, which runs five London hospitals, introduced the ban in March in its updated uniform and dress code policy, which extends to items on workstations, laptops and iPads, even if staff are working from home and not seeing patients.The policy says it is in keeping with the trust’s responsibility to be “completely apolitical and non-biased in our care”, but the claimants point to Barts’ support for Ukraine