A woman with severe ME ended her life by assisted suicide with her husband and two sons by her side after moving back from the UK to her native Netherlands.
Edina Slayter-Engelsman, 57, went to Holland where euthanasia and assisted suicide have been legal since 2001, and doctors gave her a lethal injection earlier this year.
The Dutch national, who used to live in Aberdeenshire, was a keen hillwalker, cyclist and swimmer until she started experiencing symptoms of extreme tiredness.
Mrs Slayter-Engelsman had myalgic encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (ME/CFS), which affects at least 250,000 people in the UK.
She found she could not even leave her bed to shower or use the bathroom, and became bedbound weeks after being diagnosed with the condition in 2020.
Edina Slayter-Engelsman was a keen hillwalker, cyclist and swimmer until her symptoms began
She had lived in Scotland for 30 years and after moving back to Holland, she insisted that ending her life would provide an ‘off ramp’ from her ‘unbearable suffering’.
In one of a series of messages recorded before her death, she compared her life to being stuck in a spider’s web, saying: ‘Every time you try to get out, the web just gets tighter and tighter around you.’
According to a BBC Scotland report, Mrs Slayter-Engelsman added: ‘This disease has taken everything from me. I feel trapped physically, cognitively and emotionally.
‘I exist but I don’t live and this condition has become unbearable to me and has been for a long time now, to the point where I want to end my life.’
‘I have not been able to read books, or watch telly – everything is too much.’
In another of her final messages, Mrs Slayter-Engelsman said: ‘There are a lot of people like me, they don’t get seen, they don’t get heard because they can’t.
‘They are stuck at home, often in their bedroom. There is no help but there should be.’
She moved to the Netherlands in 2023 and had a year of psychological and psychiatric assessments, as well as being assessment by Amsterdam’s institute of chronic fatigue.
But a conclusion was reached that there were no other treatment options for her, and she therefore was allowed to end her suffering with a doctor giving her a lethal injection.
This followed laws in the Netherlands on assisted dying, which allows voluntary euthanasia for patients experiencing ‘unbearable suffering with no prospect of improvement’.
This element is a recent expansion to Dutch laws on assisted dying which have existed since 2001.
A Scottish government spokesman told MailOnline: ‘We recognise how distressing and debilitating severe ME/Chronic Fatigue Syndrome (CFS) can be and want to make sure people can access the care and support they need to manage their condition.
‘The latest NICE guidance includes clear and specific recommendations regarding the care of people with severe ME/CFS. Service provision is the responsibility of NHS boards and we expect all boards to provide care that is person-centred, effective and safe.
Edina Slayter-Engelsman was given a lethal injection by doctors in Holland earlier this year
‘We are currently updating health board data on ME/CFS care in Scotland with the aim of identifying areas where there is potential to progress service development.’
Last week an Assisted Dying Bill was officially introduced in the House of Lords.
The prospect of legalising assisted death has increasingly been in the spotlight in the past year, with moves being made elsewhere in the British Isles, and the revelation from cancer-stricken TV star Dame Esther Rantzen that she has joined Dignitas.
Former Labour justice secretary Lord Falconer of Thoroton’s private member’s bill – the Assisted Dying for Terminally Ill Adults Bill – is expected to be debated in mid-November.
It is possible a private member’s bill on assisted dying could be chosen for debate in the Commons, when a ballot takes place in September.
Health Secretary Wes Streeting said the time for debate on the divisive issue has come, but admitted he is ‘uncharacteristically undecided’ on the topic.
Lord Falconer’s Bill would allow terminally ill adults with six months or under left to live to end their lives, and the peer has stressed that it would have strong safeguards, including that the person has to be mentally able to make the decision, two doctors would have to approve it and it must have High Court approval.
Prime Minister Sir Keir Starmer has committed to allowing a free vote on assisted dying, but has declined to put a timetable on it.
Assisting someone to end their life is currently a criminal offence in England and Wales.
An emotional debate in Westminster Hall earlier this year saw MPs from across the political spectrum give impassioned speeches for and against changing the law.
Various moves towards a change in the law have also been taking place in Scotland, on the Isle of Man and Jersey, with strong arguments from people on both sides.
Critics argue that legalisation could put pressure on vulnerable people to end their lives for fear of being a burden on others and that the disabled, elderly, sick or depressed could be especially at risk, but supporters say it would allow people to die with dignity.
In one case last week, an inquest heard that a senior doctor pleaded with a young woman suffering from severe ME to remain in hospital rather than go home.
Maeve Boothby-O’Neill, 27, had suffered with ME for a decade and was being treated at the Royal Devon and Exeter Hospital before she died at home in October 2021.
Edina Slayter-Engelsman said ending her life would provide an ‘off ramp’ from her suffering
An inquest in Exeter heard last Friday that Miss Boothby-O’Neill had been admitted to the hospital three times that year for treatment for malnutrition.
It was during her second admission, between May and June, that she told doctors she wished to be discharged and to continue treatment at home in Exeter.
The hearing is focusing on the last few months of Miss Boothby-O’Neill’s life by which time she was confined to bed, unable to chew food and had difficulty drinking because she was not able to sit up.
Dr Kashyap Patel, a consultant in diabetes and endocrinology, told the hearing he had tried to persuade Miss Boothby-O’Neill to remain on his ward but, as she had mental capacity, he could not stop her leaving.
For confidential support call the Samaritans on 116123, or visit a local Samaritans branch. See samaritans.org
