Talk to MDMD in London 14th April 2018

MDMD/FATE/Humanists UK: working together to change UK law

Richy Thompson | Director of Public Affairs and Policy, Humanists UK

Heather Williams | Friends at the End (FATE)

Slides available:

Richy Thompson, Humanists UK

Heather Williams, FATE


Heather Williams talk starts at 45 mins

Q&A start at 1hr 04mins


After an official warm welcome to everyone by the Coordinator of MDMD, Phil Cheatle, the talks were opened by Richy Thompson, the Director of Public Affairs and Policy at Humanists UK (HUK) which is a national, non-religious  organization with 65,000 members.

Richy, who has been working for HUK for 7 years is their lead on assisted dying and was keen to talk to MDMD members as we share an almost identical policy on assisted dying with both HUK and the Humanists Society Scotland. He outlined the recent history of parliamentary and judicial events related to assisted dying and how they are closely intertwined.

HUK has broad interests including marriage, abortion and assisted dying and all of these subjects are treated as conscience issues by parliament with a free vote by MPs. HUK historically has been involved in campaigning, working with politicians, the media and lawyers, notably barrister QC Caoilfhionn Gallagher, and medical ethicists who provide witness statements for some cases. The patient Terry Pratchett famously did his own witness statement. HUK primarily focus on England and Wales, they feel that Northern Ireland is a more socially conservative society which has less debate on assisted dying.

Most of the legal work is related to Article 8 of the European Convention on Human Rights which states that citizens have a right to respect of their private and family life with no interference by public authorities except in maintaining the laws of the land and protecting society, including morals and the freedom of others.

In the Human Rights Act (1998) it is sections 6(1) and section 4 which are highly relevant, the former forbidding public authorities from breaking a Convention right and section 4 dealing with ‘declarations of incompatibility’ by the court where a provision of primary legislation is incompatible with a Convention right. There is no compulsion to be compatible but a ‘declaration of incompatibility ‘ is treated as a very serious matter and referred back to parliament, such as the prisoners’ right to vote.

HUK believe that the illegality of assisted dying is out of step with human rights and the Supreme Court should make a ‘declaration of incompatibility’ regarding it.

Richy then went on to outline the history of some legal cases, the first being that of Diane Pretty who suffered from motor neurone disease and was the first human rights case to be heard here in UK. In 2002 it went before the House of Lords, Britain’s highest court at the time, where they decided she had no claim, that Article 8(1) was not engaged. However the European Court of human rights subsequently ruled that Article 8(1) was engaged but 8(2) protecting others was too. They looked at law in the UK and decided that the government provides flexibility with lack of prosecutions for assisting suicide and that the UK courts can delve deeper into other cases and may come to different conclusions.

The second case mentioned was that of Debbie Purdy who suffered from multiple sclerosis and her case was to do with the lack of clarity regarding the discretion of the public prosecutor, accusing this lack of clarity as being unlawful. In 2009 she won the House of Lords case forcing the director of public prosecutions at the time, Sir Keir Starmer, to publish a document in 2010 outlining when prosecutions will happen. This listed 16 factors in favour of prosecution and 6 against including when there is a voluntary, clear, settled, informed, decision and compassion is the overriding motivation for assistance. However the assister will still be subject to police questioning and it is best to hand yourself in and be cooperative.

The next case outlined was the Tony and Jane Nicklinson and Paul Lamb case. The former suffered from locked in syndrome and the latter had a car accident leaving him physically disabled from the neck down and suffering severe pain. They challenged the fact that they were not allowed assistance to die and the uncertainty about prosecutions following their death. Tony lost his case at the high court in 2012 and died two weeks later from pneumonia after refusing food and water. Jane took up the case arguing that family life had been disrupted by not allowing assisted dying. Paul Lamb joined the case as he wanted the option of an assisted death in the future when his pain was predicted to get worse. He wanted the reassurance of having an assisted death when the time is right; in the Netherlands many don’t ultimately use this right. In 2014 Jane and Paul lost their case. Nine judges heard the case (could be 3-13 judges, so deemed an important case). Two judges voted in their favour of the illegality of assisted dying being against article 8, four voted against but the three others decided that this was a high profile ethical debate which parliament should get a chance to debate and vote on. Apparently this was a first and HUK believe that a ‘declaration of incompatibility’ should have happened then.

A similar situation arose in 2017 in the Belfast court of appeal regarding the Belfast high court’s decision to make abortion legal following sexual crime. The court of appeal overturned it and said the Northern Ireland assembly should look at it.

Richy then outlined the attempts to legalise assisted dying through parliament by Lord Joffe (2003-2006, tried three times), Lord Falconer and Rob Marris MP. In 2005 the House of Lords set up a select committee who published a report on the subject and Baroness Finlay was amongst others on the committee who were adamantly against a change in the law so eventually Lord Joffe’s last Bill ran out of parliamentary time.

In 2010 Dignity in Dying commissioned a report which was published in 2012 which recommended a change in the law for the terminally ill.

Between 2013-2014 Lord Falconer tried three times to get a bill through parliament and it got to the second reading but ran out of time again and wasn’t helped by the Supreme court’s decision on the Nicklinson case in 2014.

In 2015 Rob Marris was the first to bring forward a private members bill in the House of Commons since 1997. It was broadly based on Lord Falconer’s Bill but was defeated by 330 votes to 118, however many conservative MPs were in favour of assisted dying.

There is no ongoing parliamentary Bill so attention has been focussed on the Conway and Omid cases, the former has motor neurone disease and the latter multiple system atrophy. Parliament failed, so back to court! The Conway case has the support of Dignity in Dying because it fulfils the 6 month limit of life. Omid has the support of MDMD amongst others but his case is lagging behind the Conway case which initially had its first application for the case to be heard rejected. This was overturned by the court of appeal but then went on to lose in the High court with no permission for appeal. However an appeal has been made to the Court of appeal where it is due to have a full hearing in a few months’ time. HUK believe that judgement of only the higher Supreme Court is important in regard to getting the law changed and expect more progress for Conway than the Nicklinson case because the Marris Bill was rejected so it is up to the Courts to make a decision.

Omid’s case is due for a more comprehensive two day hearing to decide if a heavy approach assessment of evidence by Courts or parliament is relevant.

So, where now? We need a change of make up of MPs unless a ‘declaration of incompatibility’ comes from the Courts, most likely in the Supreme Court.

We hope that movement in other jurisdictions such as Canada, Victoria in Australia and even Guernsey will all help and by working through the All Party Parliamentary Group on choice at the end of life we can build up a majority of support from MPs.

At the moment we share Dignity in Dying’s belief that support of the legal cases is the most important thing that we can do at this time.

Question: My daughter was working for ‘Act for the Act’ to protect the Human Rights Act (1998). What will happen if the government repeals the Human Rights Act after Brexit?

Answer: HUK believe that criticism of the Human Rights Act is not fair and there is no proposal to pull out of the Human Rights Convention so the Human Rights Law should not be weakened.

The second guest speaker was Heather Williams from ‘Friends at the End’ (FATE) which was founded in Scotland in 2000 by amongst others Dr Libby Wilson, who had also set up the first family planning clinics for unmarried women in London and Glasgow.

FATE’s objectives are basically the same as MDMD’s, plus they work towards ensuring as good a death as possible at present. Introducing laws about assisted dying is a devolved issue to be decided by the Scottish parliament. This is made no easier by the fact that there is no Suicide Act in Scotland and no guidelines from the Lord Advocate about the outcome for an assister in a suicide case.

There have been two recent cases, the first Ian Gordon from Troon who helped his wife to die and was charged with culpable homicide and received a 3.5 years prison sentence. On appeal they admonished him and quashed the sentence. In January of this year Suzanne Wilson was allowed to go free after helping her husband to die. This was decided by the Sheriff.

In Scotland the justice system is not perfect, not always fair and a bit confusing regarding assisted dying, it is ‘a bit of a mess’. Equality of Human Rights are meant to be enshrined into the set up of legislation in Scotland but the Scottish parliament are not meeting their duties as regards Articles 8 and 14.

In 2010 Margo MacDonald’s End of Life Assistance Bill failed to pass stage one by 85 votes to 16. She introduced another Assisted Suicide (Scotland) Bill in 2013 but died in 2014. Patrick Harvie took it up but it also failed by 82 votes to 36. This was asking for a 3 stage process: preliminary declaration , first request, second request and followed by ingestion of a lethal drug.

There was a new make up of the Scottish parliament in 2016 and FATE is the secretariat for a new cross party group on assisted dying with George Adam SNP Paisley, as its head. His wife has multiple sclerosis. In Scotland Labour are generally anti and many conservatives are supportive.

FATE promotes

  • Advance Directives; in 2000 they tried giving them legal status but it was deemed too contentious an issue.
  • Educating MSPs and the public. Over 50 MSPs are supportive and they are trying to get information about the SNP’s standing on assisted dying.

75% of Scots are supportive but most are passive supporters with not much debate and the Scots tend to avoid talking about death.

FATE are organizing a ‘Good Death Week’ to increase awareness and they are present at Freshers’ Fayres etc.

  • Support for Omid’s case, supplying witnesses and supporting Gordon Ross’ case.
  • A Scottish government consultation on a Mental Capacity Act, including Advance Directives. There is a need for a central registry for them and a push by the government to get people to write them.
  • Training for doctors and associated professionals.
  • Local groups in Edinburgh, Fife, Tayside and Glasgow to get people talking and put pressure on politicians.

FATE believes that it is untenable to leave it to the Court and Sheriffs to decide individual cases. They believe that another private member’s Bill is most likely to succeed in Scotland, with public consultations. Unfortunately people against are well organized, especially religious groups. FATE feels that all they can do is prepare the ground for the next private member’s Bill.

Question: Do your volunteers supply support?

Answer: ‘Befriend at the End’ offers telephone and face to face discussions to discuss options and choices.

Question: Is there a Voluntary Euthanasia Society in Scotland?

Answer: Gordon Wyllie was the convenor and it does still exist but it is not very active.

Question: What about Exit International?

Answer: We believe they hold workshops on methods people may use to end their lives. We don’t support that route. Instead we campaign for a change in the law so that a safeguarded process is available.

Question: A general election is unlikely until 2022 so we have time to influence who gets elected and vote out objectors and vote in supporters. Have you any experience of doing this?

Answer: In a run up to a general election HUK cannot be party political as we are a charity. All we can do is provide information about the views of different parties and MPs and provide information to help people write to MPs and challenge MPs at hustings and MPs on your doorstep. We would like to see MDMD do more along these lines but it is difficult to get involved in MP selection. Better to get involved with party political groups suggesting policy on assisted dying.

FATE, Humanists Scotland and DiD are working together on an ‘Empower at the End’ campaign to get a right to a dignified death and palliative care into political manifestos and debated at party political conferences.

Question: The law hasn’t changed much but medical practice has changed. If one wants to go to Switzerland and need your medical records the doctor will ask why and cannot give them to you. Surely it is up to insurance companies and the BMA to do something about this?

Answer: A doctor is obliged to give you your records but there are problems. BMA policy forbids it although there was a shift one year but then shifted back again. The British Medical Journal is calling for debate on the subject of assisted dying. HealthCare Professionals are trying by supporting it but more medical bodies in favour would be helpful.

Thank you to both speakers and everyone for coming and FATE for co-sponsoring the meeting. It is good to see the three groups working a lot closer together, with a similar approach, as we have a lot in common.