CAMPAIGNIssue 3 of 3 2015 I SHOULD BE ABLE TO DIE WITH DIGNITY IN MY OWN COUNTRY, IN MY OWN BED. THE LAW NEEDS TO CHANGE. BOB COLE 1946 - 2015

Find out exactly what happened with the Assisted Dying Bill on 11th September 2 CONTENTS.

4. House of Commons debate 6. Arguments that ignore the facts 8. MPs supporting law change 9. Billboards Crowdfunding campaign 10. Bob Cole speaks out from Switzerland 12. Keir Starmer MP interview SARAH WOOTTON 14. Victory in California! Chief Executive 16. AGM 2015 minutes 1 7. Why does the BMA oppose assisted dying? WELCOME. 18. Campaigning in Eastbourne 19. Director of Campaigns: in it ou, and everyone involved to win it with Dignity in Dying, 20. Disabled activists Yworked tirelessly over angry at organisations the summer to persuade MPs “representing” them of the need for law change. In a 21. My Life, My Decision: One campaign that lasted less than 12 Year On weeks supporters up and down 22. Starting the Conversation: the country met with their MPs, Planning ahead for your sent almost 90,000 emails and future treatment and care thousands more hand-written letters. We successfully raised CONTACT US. money online to fund a national Dignity in Dying, 181 Oxford St, billboard campaign (page nine), as London, W1D 2JT well as made the public aware of compelling stories from numerous 020 7479 7730 terminally ill people including [email protected] Bob Cole (page 10). Sadly, the Bill www.dignityindying.org.uk was not voted through to the next stage by MPs - you can read more www.facebook.com/ about what happened on Friday dignityindying 11th September on page four. @dignityindying The defeat was disappointing, Editor Mike Hamilton something many of you have Dignity in Dying is a non-profit membership organisation. A registered company in England & , no. 4452809 expressed, but we have no doubt 3 that the law will eventually change. We know we will win because we Dignity in Dying has not lost any of have committed and passionate its passion or drive for law change, parliamentarians on our side. You in fact MPs’ dismissal of the Bill need only read some of the moving has only made me, my colleagues and considered speeches of our and fellow activists even more parliamentary supporters (page determined. We know we will win. eight) and compare them to those of our parliamentary opponents We know we will win because the (page six) to know that we win the majority of the British public still argument and will continue to do so. demand law change and every day that goes by that MPs fail to deal But to win we need to intensify our with this issue dying people are campaign. We need to be smart and needlessly suffering. That cannot targeted and we need to get people be ignored. talking about this crucial social issue in every community across the We know we will win because we country. Over the coming months we have passionate and committed will be giving local activists the tools supporters like Eastbourne to take the campaign deeper into campaigner, Steve Parlanti, who their communities so we can truly reminds us (page 18) that no social harness the overwhelming power of change such as this has happened the public who support this change. without a struggle, assisted dying is not going to be any different. We will, There will be, in time, another Bill. and we must keep on fighting. Before then we need to continue to hammer home the message that the We know we will win when we look current law has consequences. around the world, most recently at the triumph in California, which Whether through cases being taken now gives choice at the end of life to the Courts, community action to 39 million more people (page in constituencies or campaigns 14). We know we will win when we highlighting the consequences of read the words of Barbara Coombs inaction, MPs will not be able to Lee, President of Compassion and ignore that their votes have a real Choices in the US, when she recalls impact on people’s lives. their own journey there “Heaven knows we have suffered losses. Together, we will win. Thank you. But such losses are temporary, and fleeting, and should not influence dedication to our cause or the expectation of eventual victory.” 4

Photo credit: Zach Moss

HOUSE OF COMMONS DEBATE: WHAT HAPPENED. BY TOM DAVIES

ob Marris’ Assisted Dying Some of the MPs who opposed Bill was defeated at Second the Bill explained that they were RReading in the House of unconvinced by the safeguards, Commons. MPs voted to reject the even though the House of Lords had Bill by 330 votes to 118, meaning agreed that they were workable. It that the Bill can proceed no was clear, however, that there was a further. large core of MPs who simply could not support the Bill due to their own The tone of the debate was broadly personal beliefs. respectful and featured some excellent contributions by MPs The Bill was never likely to pass into who support a change in the law. law this year, a situation confirmed Most notably, Sir Keir Starmer – by the Prime Minister who set the Labour MP for Holborn and St out his opposition to the Bill early Pancras and previously the Director on in this Parliament. However, of Public Prosecutions – explained during the debate MPs from both why he thought the current legal sides of the argument agreed with situation was in need of reform: David Cameron that there are “imperfections and problems” with …we have arrived at a position the current law. where compassionate, amateur assistance from nearest and The defeat on 11th September was dearest is accepted but professional a blow, but this does not mean the medical assistance is not, unless assisted dying campaign is defeated someone has the means and physical for the rest of this Parliament. assistance to get to Dignitas. That What gives us hope are the many to my mind is an injustice that we MPs who are dissatisfied with the have trapped within our current current law and made impassioned arrangement. speeches in support. With their help 5

Photo credit: Zach Moss we will continue to bring the plight of We will ensure that our dying people and the injustice of the Parliamentarians must confront the current law to the attention of MPs. inadequacies of the current law. This proposal for legislation was YOUR SUPPORT WAS defeated, but that does not mean VITAL! that the law we have works well. The vocal campaign by Dignity in Dying supporters made a big impact In the light of MPs’ refusal to debate and gave the issue the attention it the issue further, we will continue to deserved. Tens of thousands wrote ask the Courts to do what they can to their MP, many of whom followed to interpret what is an increasingly it with a meeting to persuade them dysfunctional law. of the arguments. In addition there were hundreds of supporters joining Dying people are being forced into together outside Parliament on desperate situations now, and they the day, chanting and drawing the deserve the choice just as much as attention of MPs, the media and dying people across the world who passers-by. There was a mood of already have that option. frustration directed at Parliament following the vote, but without doubt If you haven’t written to your MP a conviction that we will carry on about the debate, please do so. If fighting and that we will eventually your MP supported the Bill, praise win. them; if they opposed the Bill, ask them why. If your MP did not vote, WHAT NEXT FOR THE please ask them why they were not ASSISTED DYING able to attend the debate – and ask CAMPAIGN? whether they would have supported There will be future opportunities to the Bill in any case. It is crucial for legislate on the issue in subsequent our campaign to have the best idea years of this Parliament. of MPs’ thinking on the issue to help us focus our efforts in the future. Our focus will be on contacting those MPs who expressed doubts about To find out how your MP voted, assisted dying and on addressing please call Thomas Davies, Public their concerns. We at Dignity in Affairs Manager or visit our website: Dying, and our members and supporters across the country, need 020 7479 7734 to lobby MPs who do not oppose the www.dignityindying.org.uk/ principle of assisted dying but who commons nonetheless opposed the Bill on this occasion. 6 ARGUMENTS THAT IGNORE THE FACTS. BY LLOYD RILEY

any of those who voted against the Bill made various misleading and ill-informed claims about assisted dying. Dying Mpeople deserve an evidence-based debate on this issue and it is disappointing that so many MPs ignored the available evidence and made these unsubstantiated claims. ROBERT FLELLO DR LIAM FOX Stoke-on-Trent South, Labour North Somerset, Conservative

In around 7% of cases, the person …it does fundamentally change suffers from vomiting or spasms. the relationship between doctors and In one in every 10 cases there can patients, and that change cannot be be problems with administering the undone once it has been made. We barbiturates. In addition, in about 1% are talking about overturning 2,000 of cases, the person has woken up. years of the Hippocratic oath.

This 7% figure is almost entirely It is widely understood that the irrelevant; as the research was Hippocratic Oath is incompatible conducted in the Netherlands more with modern medicine and has since than 15 years ago. Whereas, the been replaced by the Declaration most recent data from of Geneva, which does not in any published this year, shows that in way prohibit assisted dying. More only 2.6% of cases is the life-ending importantly, Dr Fox needs to listen medication regurgitated and there to his constituents, more than 87% were no reported seizures. Crucially, of people in the UK say a change the Assisted Dying Bill in this country in the law would actually increase – unlike that in Oregon – would have or have no effect on their trust in a healthcare professional present doctors. Surely a bigger risk to that would further reduce the already the relationship is that the medical minimal risk of complications. profession continue to ignore the wishes of their patients. Current medical guidance emphasises patient centred choice and care, which underpins assisted dying. 7 KARL MCCARTNEY NADINE DORRIES Lincoln, Conservative Mid Bedfordshire, Conservative

Assisted dying would devalue any The poison administered when extra development or funding for someone makes the choice to advances in palliative care, reducing take their own life, however, is not the quality of care that those wishing pleasant. They choke. It is not a good to receive it could and should receive death. at the end of their life. Such claims are simply not true and Mr McCartney seems to be making there is no evidence to justify this these unsubstantiated claims without claim. Research has found that in looking at the evidence, as assisted Oregon the experience of death of dying and developments in palliative those pursuing assisted dying was care go hand in hand. For instance, no worse compared to those who Oregon is rated amongst the best did not, and in many cases family States in the USA for palliative care. members rated the experience as The Oregon Hospice Association far better. Ms Dorries seems to have initially opposed assisted dying but forgotten and displays little sympathy later acknowledged that changing or concern for those who, under the law had not undermined the current law, are forced to take Oregon’s end-of-life care – with 90% their own life behind closed doors of people having their assisted death without any advice or professional while receiving hospice care. assistance. 8 A BROKEN LAW: be like, but I would like to give people the peace of mind that if the situation MPS SUPPORTING becomes intolerable, they can make LAW CHANGE. an informed choice about their own life.” BY MIKE HAMILTON MADELEINE MOON e were inspired by Bridgend, Labour supporters of the “There has been much talk about how Wcampaign in the House individuals affected by the Bill may be of Commons who contributed to a burden on their families, but nothing the debate; they often spoke from about how life may be a burden on first-hand professional or personal those who are dying.” experience of the current broken law. Supportive MPs came from KEIR STARMER across the political spectrum; they Holborn and St Pancras, Labour spoke with evidence and passion. “…we have arrived at a position where compassionate, amateur assistance NORMAN LAMB from nearest and dearest is accepted North Norfolk, Liberal Democrat but professional medical assistance “I just want to say a word about the is not, unless someone has the current law, which puts families in the means and physical assistance to most invidious position…if someone get to Dignitas. That to my mind is an acts out of absolute compassion, injustice that we have trapped within they are still left with their home being our current arrangement.” declared a crime scene and with a police investigation… That is surely CHLOE SMITH an intolerable position.” Norwich North, Conservative “The current law is unclear and often CRISPIN BLUNT people are forced to take hidden, Reigate, Conservative undignified and desperate action. “The Bill gives people in those Some relatives and loved ones are circumstances a little bit of control at risking criminal prosecution. Ethical the end. Perhaps most importantly, it problems exist today, whether for the gives everyone the potential to have patient, doctor or family—they are not that little bit of control at the end.” invented by the Bill.”

SARAH CHAMPION If you missed the debate or would Rotherham, Labour like to re-watch it you can find a link “This Bill will enable people to have to Parliament TV at peace of mind. We do not know—we www.dignityindying.org.uk/ do it only once—what our death will debate 9

OUR MESSAGE WAS HEARD ACROSS THE COUNTRY.

BY ZACH MOSS

ne thing we’re always target of £10,000. Eventually we thinking about at Dignity in went on to raise over £30,000 and ODying is how we can give were able to secure 31 billboards supporters like you a voice. around the country.

Some MPs just aren’t aware of the It quickly became clear this strength of public support – so in the campaign was something that really run up to September’s debate in the resonated with supporters, some House of Commons we had to think of the comments from people who of a way we could communicate pledged explain why… this fact. I have written to my MP, but he We had the idea of starting does not support this bill, thank you a crowdfunding campaign (a for giving me a voice… fundraising campaign where supporters can and must raise a Glad to be able to help & set amount of money to achieve a contribute my money & voice to a specific goal). Our ask to supporters cause so important to me. Sir Paul was to raise £10,000 in just three Beresford, listen up. Heartened weeks to pay for ten advertising by everybody’s contributions and billboards around London to show support. Great idea! MPs we wanted them to take action to change the law. We would like to say a huge thank you to all our supporters who Having never done something like contributed to the crowdfunding this before we were a bit nervous campaign, I’m glad we were able about how supporters would react. It to give you a voice – MPs didn’t turned out we need not have worried listen this time, but with this level of as the response was overwhelming. support it’s only a matter of time. Within hours of launching the campaign we’d raised half our target MPS HEARD YOUR and by day three we hit our initial MESSAGE, BUT CHOSE TO IGNORE IT 10 BOB COLE SPEAKS OUT FROM SWITZERLAND.

BY MICKEY CHAROUNEAU

ob Cole, a campaigner of three months in June and his with Dignity in Dying, condition deteriorated rapidly with Bhad an assisted death every passing day. He began talking at Dignitas on the 14th August. to Dignitas and decided he wanted He courageously spoke out to control the manner and timing of before he died and called on his death. Given the current law, this Parliamentarians to legalise meant travelling abroad. assisted dying. Please forgive me if you think I Bob travelled to Dignitas 18 am being selfish, but there is only months earlier with his wife who so much physical pain one can take. had progressive supranuclear Don’t cry for me and remember the palsy (PSP). When Bob returned good times and get on with them. to Chester he joined Dignity in Dying. During this time he gave As a campaigner over the last 18 interviews about his wife’s decision months Bob understood the need and travelled down to London for our to show the reality of the current AGM and demonstrations outside situation to the public. So with Parliament. immense bravery he decided to tell his story before he went to Dignitas. Nobody should be forced to end He spent two days conducting their own life, nobody, but there are interviews with ITV News and The some of us who have come to the Sun, it was physically exhausting for end and want to bow out with dignity. Bob as at this point he could hardly We want the choice to end our own leave his house but he got through lives. them and explained his reasons for travelling abroad. Bob was diagnosed with mesothelioma – a lung cancer most Bob travelled to Switzerland likely caused by coming into contact accompanied by some of his closest with asbestos when he was an friends, who also helped with the apprentice carpenter in his teenage media interviews and stated their years. He was given a prognosis reasons for supporting their friend. 11

Bob appeared on the front page of The Sun on the day he had an Bob’s friend Mick on his death: assisted death. ITV News also After a short while he went into carried an exclusive interview with a deep coma and then he died. I Bob on its evening news. By doing have to say, he died with a smile so he became the first person to talk on his face. His last words were about having an assisted death while “I am at peace with myself and in Switzerland. Bob’s story touched thank you my friends.” millions of people by putting a human face to the subject. Bob died Bob’s friend Carol on going with him surrounded by his friends listening to Dignitas: to Beethoven’s ‘Ode to Joy’ with a I don’t worry about prosecution; it smile on his face. However, it was never really enters our head. I think it not the death that he wanted, nor is a great honour to be with someone the one he should have been able when they die. It is a great honour to to have. Nonetheless, his death had be asked to do this. a lasting impact and was a major discussion point in the days that You can watch Bob on ITV news at followed. www.bit.ly/bobcole 12 SIR KEIR STARMER MP: WE NEED A BETTER, SAFEGUARDED LAW.

y first incursion into the debate was in M2009 when Debbie Purdy, who suffered from progressive multiple-sclerosis, persuaded the highest court in the land to require me, as the then Director of Public Prosecutions, to publish guidelines setting out the approach taken to prosecuting cases. I decided to act swiftly.

Two principles underpinned my approach. First, that the criminal law should rarely (if ever) be used against those who compassionately assist a loved one to die at their request - so long as that person had reached a voluntary, clear, settled and informed decision to end their life. Second, that very strong safeguards are needed to protect those who might be pressurised (in any number of ways) into taking their own lives: those who encourage the death of the vulnerable should feel the full force of the law.

Since then hardly anyone has questioned those principles. 13

I personally oversaw over 80 interests at heart; and argue for the decisions not to prosecute in cases blanket criminalisation of assisted of assisted suicide without provoking suicide, subject to the operation of outrage or a clamour for a change my guidelines, as offering the best of approach. A motion welcoming protection against abuse. I have my guidelines was unanimously always given great weight to that supported by MPs on all sides of argument. I completely accept the the House in a Backbench Business case for very strong safeguards to Committee debate in the House of protect those who might be put upon Commons in March 2012. (in any number of ways) to take their own lives. But the truth is that the ...But the truth is that the only only safeguard that I was able to safeguard that I was able to put in put in place in my guidelines was an place in my guidelines was an ‘after ‘after the event’ criminal investigation the event’ criminal investigation into the motive of the individual who assisted their suicide. As the However, over the years I have President of the Supreme Court become increasingly concerned observed in the Nicklinson case it about two inherent limitations in would provide far better protection the guidelines. The first is that if there was a system whereby an although those who have reached a independent assessor assessed the voluntary, clear, settled and informed person’s settled decision in advance. decision to end their lives can now be confident of the compassionate The safeguards in the Assisted assistance of loved ones without Dying Bill that were proposed by automatically exposing them to the Rob Marris MP were certainly strong criminal law, the only assistance and robust. A person may only be they can be provided with is the provided with assistance to end amateur help of those nearest and his or her life if a High Court judge dearest. They cannot be provided (Family Division) confirms that he or with professional medical assistance she is satisfied that the person has a unless they traipse off to Dignitas in voluntary, clear, settled and informed Switzerland. wish to end his or her own life. Only those diagnosed by a registered The second inherent limitation in the medical practitioner as having a guidelines goes to the heart of the and less than six argument advanced by those who months’ life expectancy may apply to do not want any change in the law. the High Court. They, rightly, point to the risk that some people might be pressurised or encouraged to take their own lives by those who do not have their best 14

Debbie Ziegler fought tirelessly for a change in the law in California in memory of her daughter Brittany Maynard.

REAL END OF LIFE CHOICE IN CALIFORNIA.

BY MICKEY CHAROUNEAU

n the aftermath of the House yet he has introduced a law that the of Commons voting down church here and abroad is virulently Ithe Assisted Dying Bill in opposed to. He had three options: September it would be easy to veto the Bill, allow the Bill to pass become deflated. However, on without his signature or sign it. 5th October news came in that Vetoing was a possibility, but doing the Governor of California had so in the face of the State Assembly signed a Bill that gave choice to and mass public support would have Californians at the end of life. It had significant political ramifications. is something to celebrate that 39 He could have easily have not million Californians have the right, signed the Bill, meaning it would should they be terminally ill, to still come into law but without his control the manner and timing of endorsement. It is a symbolic action their deaths. which many Governors take if their state assembly votes in a law that The Californian Governor, Jerry they personally disagree with. Brown, is a committed Catholic and 15

In a true demonstration of leadership, against strong opposition A lobbying from his own Church, he MESSAGE signed the Bill into law himself. In an FROM accompanying letter; the Governor told the State Assembly: THE USA: PLEASE KEEP In the end, I was left to reflect on what I would want in the face of my FIGHTING ON. own death. Following the defeat in the House of Commons Barbara Coombs I do not know what I would do Lee, President of Compassion in if I were dying in prolonged and Choices in the US, sent us and all excruciating pain. I am certain, our supporters a message of hope. however, that it would be a comfort to be able to consider the options “I know a loss like this can be afforded by this bill. disheartening. Heaven knows, Compassion and Choices has And I wouldn’t deny that right to suffered plenty of them. But such others. losses are temporary, and fleeting, and should not influence dedication The Governor specifically cited to our cause or the expectation of the case of Brittany Maynard, a eventual victory. 29-year-old woman with terminal brain cancer who uprooted her Our members and donors support home from California to Oregon so us when we lose. In fact they that she could have the option of become even more devoted, assisted dying when the time came. because they see we are the only This caused a nationwide discussion ones standing up for their most in the United States, and it was fervent wish --- to die peacefully particularly charged in California when their time comes. No one which had to face up to the fact that else, no one else, speaks for them one of its citizens had been let down in the corridors of power. by the state. Please keep on with as much In California, politicians decided to fervour and dedication to assisted act. It took political leadership in the dying as ever. Those facing horrific face of hardened opposition, but act deaths in the UK, and throughout they did. Parliamentarians in the UK the world, need to see this loss has need to show similar courage. neither weakened nor deterred you, but indeed, it has strengthened your resolve.“ 16

BY LAURA MCCAFFREY AGM 2015 MINUTES. FORMAL BUSINESS 12% of their constituents who don’t 1. The minutes of the 2014 AGM want a change in the law. We, the were approved. 82% who want to have choice at the 2. The accounts for the year ends of our lives, need to remind ended 31st December 2014 were politicians of our strength of feeling”. approved and adopted. 3. Following recent Board elections Treasurer, Robert Hayward OBE Jane Calvert-Lee and Jo Gibbons (now Lord Hayward of Cumnor) gave were elected as Board members. a detailed Report, highlighting the significant increase in members and The AGM took place on 9th June supporters for the campaign, and the 2015. The AGM was opened by huge increase in social media reach. Rob Marris MP who announced Dignity in Dying Chair Sir Graeme that, upon coming top of the Private Catto chaired the meeting and Member’s Bill ballot, he would be gave the results of the recent Board taking forward an Assisted Dying elections. Bill to be debated in the House of Commons in September 2015. In the afternoon session, Lord Low provided additional insight on bringing Dignity in Dying Patron, Lord Joffe, the Falconer Bill back to Parliament, who deserves our immense gratitude and Davina Hehir, our Director of for his work on the campaign, Legal Strategy and Policy discussed reflected the achievements there potential legal challenges ahead. have been since his Bill in 2006. There was then a section on local Barbara Coombs Lee, President Dignity in Dying activists and how of Compassion and Choices in the they can make the case for law US, spoke movingly about Brittany change. It was stressed that, “the Maynard who had an assisted death most important feature of being a in Oregon in November 2014, and successful campaigner is feeling whose courage and determination passionate about the subject”. has been instrumental in pushing for change in California. Finally, we heard from Dignity in Dying Patron, The Rev. Professor Paul Chief Executive Sarah Wootton Badham who spoke about his new encouraged supporters to take essay collection, Assisted Dying: For action in light of Rob Marris’ and Against the Proposed Legislation, announcement, Sarah added, “MPs focusing on the religious, medical and have spent too long listening to the international perspectives. 17 WHY DOES THE BMA OPPOSE ASSISTED DYING? BY LLOYD RILEY

he debate on 11th September ferocious opposition of the BMA. The demonstrated that the BMA’s briefing to MPs in the week Topinion of healthcare of the debate warned that a change professionals plays a significant in the law could have a “profound role in influencing people’s views and detrimental effect on the doctor- on assisted dying. patient relationship”.

In the week leading up to the The BMA’s policy on assisted debate, a number of eminent dying simply does not stand up to healthcare professionals wrote to scrutiny and its 154,000 members every MP, expressing the view that have never been consulted on this the current law prohibiting assisted issue. This is unacceptable given dying is “dangerous and cruel”. The the importance of this issue and signatories included seven past the weight that the voice of the presidents of the medical Royal BMA carries with lawmakers. Colleges, two former presidents of the British Medical Association WE WILL NEED (BMA), a former Chief Nursing Officer for England and the present YOUR HELP. Chief Knowledge Officer of the NHS. If you are a healthcare professional then please join HPAD by visiting The letter also mentioned polling that our website: showed that many doctors support www.hpad.org.uk assisted dying and would be willing to be involved in the assisted dying If you are a member of the BMA process should the law change. and want to know what you can Despite this, a significant number of do to help the campaign then MPs decided to vote against the Bill please email: on the grounds that they believed [email protected] the medical profession as a whole was opposed. If you are not a healthcare professional, why not make your At first this seems surprising but views known to your doctor and on closer inspection it is perhaps encourage them to join HPAD? understandable given the vocal and 18 STEVE PARLANTI: CAMPAIGNING IN EASTBOURNE. Steve Parlanti spoke at this year’s AGM about his volunteering with the campaign. Photo credit: Lorentz Gullachsen Why did you get involved abstained – I hope our campaigning with the Dignity in Dying made an impact! campaign? It was after watching my mum die in What other activities have a manner totally against her wishes; you and fellow activists got I was in disbelief that in this day and up to? age people are forced to suffer at the We had a General Election hustings end. I wanted something positive to for the Eastbourne constituency, come out of my mum’s terrible death. and four of the six Parliamentary Candidates came along to debate When you met with other assisted dying, the others sent campaigners in Eastbourne prewritten statements. It turned how did you get started? out the majority of candidates We felt a good way to start was to were supportive of assisted dying, publicise the cause as much as unfortunately the two who opposed we could, and to get people talking were the only ones who had any about the campaign. The majority chance of winning the seat, which of the British public support law was incredibly frustrating. change, we wanted to encourage as In addition to holding stalls I have many as possible to actively support spoken on national and local radio change. on numerous occasions. For the debate itself ITV News Meridian How did your local MPs vote visited me at home and carried the on the Assisted Dying Bill? piece as their second story on the 6 Unfortunately my Eastbourne MP, o’clock news. Caroline Ansell, is firmly against assisted dying. In my opinion her How do you feel about the reasoning is flawed and ultimately campaign going forward? comes down to her religious beliefs. Although disappointed with the result Before the debate a group of us of the vote, we are determined not to visited Caroline to try and convince stop campaigning. No major social her of the arguments or abstain change has ever come about without from the vote – but we failed in a struggle, and assisted dying will be this mission! We have been active no different. in eight constituencies, on 11th September four were supportive, wwww.dignityindying.org.uk/ three were against and one takeaction 19

Sadly it did not result in victory. With limited time to campaign, even less time for the debate itself, no Government support and a new cohort of unknown MPs who were subjected to scaremongering of opponents, we faced an uphill struggle from the start.

It is incredibly disappointing that we did not win. Terminally ill people and DIRECTOR OF their loved ones are still in the same difficult and dangerous situation now CAMPAIGNS: as they were before the debate. I feel IN IT TO WIN IT. deeply for those who are now denied BY SAM DICK hope or security as a result. I am also disappointed on behalf of the tens of thousands who took action, many y first day at Dignity in of whom told their heart-breaking Dying was definitely a dive stories to MPs in an attempt to Min at the deep end, joining persuade them. right at the beginning of a high- profile parliamentary campaign of What the result has clearly shown national importance. It is certainly is that, even in 2015, MPs are very the quickest way to get to grips vulnerable to the fear spread by with a new job! opponents. Before joining Dignity in Dying I worked at Stonewall, the My first ten weeks were almost LGBT charity that campaigned for entirely consumed with helping equal marriage. There I faced those ensure we made as much noise as who claimed that giving people possible, whether that was in the freedom over their own lives would media or through tens of thousands damage society as a whole and of supporters. With their help we ran put others at risk. For many years a huge campaign with it becoming MPs listened to those opponents, one of the biggest issues over the refusing to change the law as a result, summer. Tens of thousands of but soon saw this for what it was: people took action including Bob baseless scaremongering. Cole who, facing his own imminent death, wanted his story to be told in I have no doubt that MPs will, in aid of the campaign. I am incredibly time, come to realise the same about impressed by the amazing supporters opposing assisted dying. We will, with we have across the country. your continued support, win this fight. 20 DISABLED ACTIVISTS ANGRY AT ORGANISATIONS “REPRESENTING” THEM BY GREG JUDGE

ver the past few months Lucy says these charities are disabled activists, with “completely ignoring their members, ODignity in Dying, have they are giving us no choice; they’re made it clear to MPs that an treating us like infants. How can a overwhelming majority of disabled body that purports to represent you, people, 86%, support assisted go completely against your wishes?” dying. Research has shown that 82% of As part of the campaign for the Bill, disabled people do not feel charities Disabled Activists for Dignity in Dying that oppose a new law on assisted (DADiD) produced a video featuring dying best reflect their views. Sadly, Lucy Aliband. Lucy became disabled some MPs in the debate feared that following a severe car accident ten a new law would lead to disabled years ago and she explained why people being forced to have an the choice of an assisted death assisted death, which is why many should be available to mentally MPs fear such a change. But they competent, terminally ill adults. ignored the fact that the Bill would be a choice solely for terminally ill dying The video was sent out to all MPs people with less than six months prior to the debate and included left to live. Sadly this misconception a clear message to charities continues to be spread by groups representing people with disabilities. opposing a change in the law.

With an overwhelming majority of Activist Lucy Aliband spoke to media on disabled people behind us and a 11th September. campaign group that continues to grow, DADiD will challenge those determined to scare disabled people. We will continue to provide evidence that the current law is failing terminally ill people and that disabled people are fully protected under a new law for assisted dying.

To watch Lucy’s video online go to: www.dadid.org.uk/lucy 21 MY LIFE, MY DECISION: ONE YEAR ON.

BY ESTHER NORMAN

t is one year since the Decision, Advance Statement ambitious My Life, My Decision or Lasting Power of Attorney for Iproject was launched, so it Health and Welfare. We have had is a good moment to pause and overwhelmingly positive feedback on reflect on the achievements to the service date. The service supports people over 50 to ensure their wishes for At any stage, if anything was treatment and care are known and wrong the Project Co-ordinator came respected. to my house and answered all my questions and supported me. She This service has allowed didn’t push it, but she was there Compassion in Dying to reach many when she was needed. communities that may otherwise have remained unaware of their The impact of the service for our rights. In partnership with local Age clients like Glenda (pictured) is UKs we have been informing and typical supporting communities directly in Oxfordshire, East London, It gives you confidence and for me Hillingdon, Lancashire, South it has given me a happier life knowing Lakeland, South Tyneside and that my wishes will be known and Trafford. respected.

Our Training Leads, Project Co- The next twelve months will be busy. ordinators and volunteers have In addition to the client support we delivered short talks and training have found that clinicians and social to staff and volunteers at Age UKs, care staff want and value our training GP surgeries, residential homes, and information. This will be rolled hospitals and hospices, and to the out in the next year as we deliver our general public at community groups, free CPD accredited training, The events and conferences. In the first Three Tools for Planning Ahead: An year we have reached thousands of Introduction. people. To find out more on My Life, My Importantly we have provided Decision go to: one-to-one support to hundreds www.compassionindying.org. of people completing an Advance uk/services-near-me BRAND NEW 22 PUBLICATION STARTING THE CONVERSATION: PLANNING AHEAD FOR YOUR FUTURE TREATMENT AND CARE. BY USHA GRIEVE

alking about what is When writing this booklet we spoke important to you helps to over 300 people about their Tmake sure that people experiences of discussing their understand what you want, and wishes for health and care and the can respect your wishes at the quotes within it are taken from the end of life. Some people find insights they shared. talking about their wishes easy. Others find it more difficult. That Telling our loved ones our wishes is why Compassion in Dying has helps them have the confidence and launched a new booklet which comfort to know that they are doing aims to support you to talk what we want them to do. about your wishes for care and treatment with your family, friends You may have thoughts about where and doctor. you want to be cared for, how you would like to be treated if something happens to you, or what is important to you at the end of life. In the 23 future, you could become unable to explain what you want or make these decisions for yourself. Talking about what is important to you helps make sure that people understand what you want, and can respect your wishes. NEWS ROUNDUP. Making and implementing For you, talking about your wishes Advance Decisions: a toolkit can: for healthcare professionals • Help you to make informed was launched at the beginning of decisions in your own time by October. Written in consultation considering your options. with a range of healthcare • Give you control over the care and professionals, this toolkit focuses treatment you receive, whether that on how healthcare professionals is tomorrow or further in the future. can support their patients and • Give you peace of mind that you service users to make an Advance have taken steps to make sure your Decision. It also looks at some of the wishes are known about, recorded difficulties healthcare professionals and respected. may face when acting on someone’s Advance Decision once they have For those close to you, talking lost capacity. about your wishes can: • Help them to feel involved in your On Monday 17th November we decisions and to understand your will be launching our new Online wishes. Advance Decision form. This • Make sure they are not left allows you to create an Advance guessing what you want if doctors Decision or an Advance Statement ask them to help make a decision (or both) online, to then print out and about your care or treatment. sign. It will outline different scenarios in which to refuse treatment as I think I felt it was better not to well as giving accessible guidance talk about things in case it made them throughout the form. Discover the happen. But when I did talk about new tool at our website it, I felt relieved. It wasn’t without www.compassionindying.org.uk challenges, but it’s my life at the end of the day and I want my family to Contact us to find out more about know what’s important to me. any of these projects, or if you would like a copy of our publications: To order a free copy of this booklet 0800 999 2434 please contact us: [email protected] 0800 999 2434 compassionindying.org.uk/ [email protected] library As a member of Dignity in Dying you by helping to bring a compassionate are entitled to use a free Will-writing change in the law for future generations. service with solicitors local to you. It allows you to support the campaign at Supporter bequests fund 25% of the absolutely no cost to you. assisted dying campaign. Whether your gift is large or small, it will make a Dignity in Dying relies on the difference. generosity of its members to continue campaigning, so terminally ill adults To get your Free Wills pack get in will have real choice at the end of life. contact with Mike Hamilton: 020 7479 7109 Leaving a gift in your Will would be a [email protected] tribute to your beliefs and principles, www.dignityindying.org.uk/legacy