Tag: terminal illness

Scotland’s leading healthcare organisations raise serious concerns over Assisted Dying for Terminally Ill Adults (Scotland) Bill

Scotland’s leading healthcare organisations raise serious concerns over proposed changes to Assisted Dying for Terminally Ill Adults (Scotland) Bill

A group of six major medical and healthcare membership organisations in Scotland has issued a joint consensus statement warning of their significant concern regarding changes now being proposed to the Assisted Dying for Terminally Ill Adults (Scotland) Bill.

The organisations – whose members span a wide range of clinical and ethical perspectives on assisted dying – emphasise that while they take no collective position on the principle of assisted dying, they are united in their concern that provisions relating to no duty to participate and conscientious objection may be removed from the Bill, and the impact that this could have on the workforce.

The Scottish Government has recently indicated that key provisions relating to ‘no duty to participate’, as well as other protections linked to professional regulation and employment rights are not within devolved powers and may be removed from the Bill at Stage 3. These issues would instead be addressed later through a Section 104 Order – secondary legislation that receives only limited parliamentary scrutiny.

The signatory organisations state that removing issues of such significance risk undermining both professional confidence and public trust.

The joint letter, sent today to Liam McArthur MSP, the Scottish Parliament Health, Social Care and Sport Committee, the Cabinet Secretary for Health and Social Care, as well as the Secretary of State and Chair of the House of Commons Scottish Affairs Committee states:

“The prospect of removing matters of such professional, ethical, and legal significance from parliamentary scrutiny at Stage 3, and deferring them to secondary legislation after the Bill has passed, raises important questions about transparency, accountability, and the robustness of the legislative process.

“These protections are central to the safe, ethical, and fair delivery of care, and to the confidence of our medical workforce who may be affected by the legislation.”

The organisations highlight four core concerns:

1. Removal of key safeguards from primary legislation

2. Risk to professional confidence and public trust

3. Inadequate scrutiny of consequential provisions

4. Implications for safe and ethical implementation

The group of organisations in consensus express their continuing commitment to work constructively with the Scottish Government and Scottish Parliament to ensure that any legislation affecting assisted dying is developed transparently, rigorously, and with full consideration of the healthcare workforce it will impact.

Signatory organisations:

  • Association for Palliative Medicine (Scotland)
  • Medical and Dental Defence Union of Scotland
  • Royal College of General Practitioners Scotland
  • Royal College of Physicians and Surgeons of Glasgow
  • Royal College of Psychiatrists in Scotland
  • Royal College of Surgeons of Edinburgh
  • Royal Pharmaceutical Society
Consensus statement – ADTIA (Scotland) Bill – FINALDownload

Marie Curie charity cancels all collections

Terminal illness charity, Marie Curie, has announced that all of its upcoming public collections in Edinburgh and West Lothian, and across the UK as part of its biggest annual appeal will be cancelled due to the current coronavirus (COVID-19) situation. 

The Great Daffodil Appeal, which runs throughout March, sees hundreds of volunteer collectors hitting high streets and supermarkets to hand out the charity’s iconic daffodil pins in exchange for donations.

                                                                                                                                                       The money raised from the Great Daffodil Appeal helps Marie Curie provide much-needed expert care to people with terminal illnesses, as well as support for their loved ones, helping them to make the most of the time they have together.

The appeal also helps the charity provide practical information and support, fund research and campaigns for more people to have access to high quality, personalised care wherever and whenever they need it.

With over 2,200 collections across the country cancelled with immediate effect, Marie Curie has estimated that it will lose £1 million from these vital collections alone – with further losses coming from many other cancelled fundraising activities and events. This will impact the charity’s work, which is going to be more important than ever over the coming months as the NHS focuses on the coronavirus.

In light of this, the charity is urgently asking people to get involved in the appeal via other ways to help its nurses, it’s hospice in Edinburgh and the West Lothian Community Palliative Care Service at St John’s Hospital to care for more people including donating online (mariecurie.org.uk/donate) or via text-to-donate (text DAFF to 70111 to donate £5*). 

Meredith Niles, Executive Director of Fundraising and Engagement at Marie Curie, said: “It is with great disappointment that we have decided to cancel all of our Great Daffodil Appeal public collections due to COVID-19 as well as a number of other fundraising events that were due to take place over the coming weeks and months – a decision which has not been taken lightly. 

“The health and safety of our dedicated volunteers and staff is of utmost importance. We are extremely grateful to the thousands of people who signed up to collect for us, without whom the Great Daffodil Appeal would not exist.

“Where possible, we hope to be able to re-schedule collections and events for later in the year, and would like to thank all our volunteers, supporters, corporate partners and staff for their ongoing support at this challenging time.”

If you, or someone you know, is affected by a terminal illness and concerned about coronavirus (COVID-19), our Support Line team are ready to help with the information you need when you need it.

Call free 0800 090 2309. You can also find more information on our website: mariecurie.org.uk/coronavirus

Blooming Great (1): Miles Briggs supports Marie Curie’s Blooming Great Tea Party

Lothian MSP Miles Briggs is joining Marie Curie to throw a Blooming Great Tea Party and raise money to support people living with a terminal illness and their loved ones.  Continue reading Blooming Great (1): Miles Briggs supports Marie Curie’s Blooming Great Tea Party

Lazarowicz: Fast-track benefits for terminally ill

‘long delays risk leaving terminally ill people destitute in the last months of their life’ – Mark Lazarowicz MP

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Mark Lazarowicz MP is backing Gordon Aikman’s MND campaign and has called on the Government to fast track benefits for people like Gordon with terminal conditions.

Speaking in a debate in Parliament yesterday, the Labour MP for Edinburgh North and Leith called on the Government to fast track benefit claims from people with terminal conditions like Motor Neurone Disease and intervened to tell the Minister that the prolonged delays, in some cases of up to 18 months, could mean the outcome comes too late for some people with limited life expectancy.

He said later: “I strongly support Gordon Aikman’s campaign to fast track benefit claims from people with terminal conditions like MND: people are waiting 6 months and in some cases 3 times that just to have an assessment.

“Claims can be fast tracked where someone is not expected to live longer than 6 months but where does that leave someone with MND where the average life expectancy after diagnosis is 14 months?

“The Government should offer financial support to people suffering as a result of the delays caused by its own incompetence but first and foremost it should make sure that their claims are fast tracked.

“The Minister’s response in the debate was not acceptable: it’s shameful that people who are so ill should spend the last months or year of their life in financial hardship having to fight so hard for the benefits they are entitled to.”

He was speaking in a debate on the introduction of the new Personal Independence Payment (PIP), the disability benefit that is replacing Disability Living Allowance (DLA) which is designed to help seriously ill or disabled people with the extra costs their condition entails.

It was announced on Thursday that responsibility for PIP is to be devolved in future and Mark has called for the roll-out of the new benefit to existing DLA claimants to be stopped until it is because of the huge backlog of assessments.

That was also the conclusion of the House of Commons Work and Pensions Select Committee: it reported last March that even where someone did have their claim fast tracked because they were not expected to live more than 6 months, the time taken to process their claim had increased from typically 8 days with DLA to 8 weeks with PIP.

Mark Lazarowicz says the Government has moved the goalposts: its original target was for the whole process from claim to decision to be completed within 16 weeks, now it is that all assessments should be completed within that time and it is even failing that target.

gordon aikman
Gordon Aikman’s story

I’m dying. And fast.

That – in short – was what my doctor told me just a few weeks ago when I was diagnosed with Motor Neurone Disease.

It’s not the news you expect when you are 29 years old.

MND is a rare, progressive and debilitating disease that attacks the brain and spinal cord. It leads to weakness and muscle wasting and will affect how I walk, talk, eat, drink and breathe.

There is no cure. 

That’s why I am doing all I can to raise money for MND Scotland – a great charity that funds and promotes research into the disease and provides support to people affected by Motor Neurone Disease.

It’ll be too late for me, but we must find a cure for the next generation.

With your help I can turn a negative into a positive. Please dig deep and donate what you can today. 

100% of the money you donate will be spent on trying to find a cure.

Thank you

Gordon  

P.S. Please visit www.gordonsfightback.com to tell your your MP and MSPs to back my campaign to double MND research funding.

To date Gordon has raised £216,683.88 of his £250,000.00 target. 3,690 individual donations have been made.

https://www.justgiving.com/gordonaikman/