Tag: Marie Curie

20 million UK adults have ‘no idea’ about end of life care

  • 50 per cent have given no thought to planning if a terminal diagnosis was received –
  • The Rough Guide to the End of Life created and released as urgent free guide to end of life care –
  • Leading end of life charity Marie Curie highlights it supports people with any illness they are likely to die from, not only advanced cancer–

New polling has revealed that around 20 million / over a third (38 per cent) adults agree they do not know what end of life support and services are currently available in the UK, with half admitting they have given little thought to planning ahead if they were to receive a terminal diagnosis.

In response, Marie Curie, the UK’s leading end of life charity with a 75-year history, has partnered with Rough Guides to create the first ever UK ‘guidebook’ to end of life. The Rough Guide to the End of Life aims to help people navigate the end of life with advice and information from Marie Curie.

The charity aims to double the number of people it provides direct expert end of life care to by 2028 and highlight its services not only support those with advanced cancer, but any illness they are likely to die from including Alzheimer’s (and other forms of dementia), heart, liver, kidney and lung disease, motor neurone disease, and Parkinson’s.  

Despite end of life being inevitable for all, 40 per cent say they would not know how to access the information or services required to best support the needs of someone nearing their end of life.

While two thirds (64 per cent) state they would expect the NHS to refer them to all available resources if they were given a terminal diagnosis, however every five minutes someone dies in the UK without the care they need according to Marie Curie.

There is further confusion around where people can receive end of life care with 43 per cent of people surveyed not knowing care can be received from home. In fact, Marie Curie provides end of life care to people in their own homes. 

Available as a free downloadable guide at www.mariecurie.org.uk/withyou, The Rough Guide to the End of Life intends to help with ‘planning ahead’, offering tips on making a Will and sharing your preferences for your funeral to what to do with your social media and online accounts.

It also provides supportive guidance on how to cope with feelings if you or a loved one are at the end of life stage, alongside guidance on bereavement and grief.

The free guide also features relevant resources and organisations like Marie Curie who can provide support, and where and how to access end of life care when it is needed. 

Maria Novell Chief Innovation, Income and Engagement Officer at Marie Curie says: “It’s heart-breaking when we hear that someone didn’t know Marie Curie could help them or their loved one with the end of life.

“Wherever you are and whatever the illness, Marie Curie is with you to the end and the leading end of life charity. The Rough Guide to the End of Life is a physical demonstration of the support and guidance we provide for many people and families.

“We hope it becomes an invaluable family resource that shows people who are affected by any terminal illness that we’re there for them.

“By being better prepared and knowing how to access the right care and support services, whether for you or a loved one, will help improve a person’s chance of having a good end of life experience.” 

Kate Drynan, Senior Editor at Rough Guides says: “Our guides have supported millions of travellers over the decades, but we could not think of a more important journey than helping people to navigate their final chapter of life.

“We are proud to have partnered with Marie Curie on this important campaign and hope the first The Rough Guide to the End of Life gives support to many.”

To download the first The Rough Guide to the End of Life for free, visit the Marie Curie website www.mariecurie.org.uk/withyou

For more information about Marie Curie please visit: mariecurie.org.uk.  

The-Rough-Guide-to-the-End-of-LifeDownload

Mark Foster urges Edinburgh swimmers to ‘Make a Splash’ with Swimathon

FORMER team GB swimmer Mark Foster is calling on people across Edinburgh and the Lothians to take the plunge and sign up for Swimathon 2022.

The swimming hero is helping to highlight the annual fundraiser which raises money for Cancer Research UK and Marie Curie.

He is urging people of all ages and abilities to enter the sponsored event taking place at pools across Scotland from 6-8 May.

With a variety of distances to choose from – from 400m up to 30.9k – Swimathon offers a challenge for swimmers young and old, new and experienced. People can participate individually or as part of a team.

Any swimmers who can’t make one of the organised sessions can sign up to MySwimathon, which takes place from 29 April-15 May, and choose a time and venue that suits them.

After another challenging year for the sport, following the impact of the pandemic, Mark is championing the positive power of swimming to help inspire people to get back to the pool.

He said: “Swimming is a fantastic form of exercise, with a wide range of benefits for both your physical and mental health and is accessible to people with varying abilities and needs.

“So, whether you’re a keen swimmer who is in the pool all the time, prefer to be in open water or if you are just dipping your toes in for the first time, Swimathon is the perfect challenge for everyone. That’s why I’m asking everyone to get involved and feel the benefits of this fantastic sport whilst raising money for two great charities in Cancer Research UK and Marie Curie.”

Swimathon is the world’s largest annual swimming fundraiser. Since launching in 1986, more than 750,000 swimmers have taken part, raising over £55 million for charitable causes.

This year will also see the Swimathon Foundation donate £2.50 from the entry fee of everybody taking part at an official Swimathon venue to help protect these pools for the future.

Victoria Steven, Cancer Research UK spokesperson for Scotland, said: “It really doesn’t matter if you’re not the fittest or the fastest, Swimathon is such a fun and simple way to encourage people to get swimming – all while supporting causes which are close to the hearts of so many.

“1 in 2 of us will get cancer*, but all of us can support the research that will beat it. From proving the link between smoking and cancer to laying the foundations for modern radiotherapy – our scientists have been at the forefront of cancer research for 120 years.

“And we’re not stopping now. That’s why we’re urging swimmers to dive in this spring, raise money and help us keep investing in science today to deliver the treatments of tomorrow. Together we will beat cancer.”

Marie Curie Nurse, Janet Lockheart, and Healthcare Assistant, Amy Chellew, will be undertaking Swimathon this year, after originally planning to do it in 2020.

Janet said: “We decided to do Swimathon to raise money to support the wonderful team at Marie Curie and the people that we care for. We’ve seen first-hand the difference fundraising can make to families that need our support, so to be able to do this for them, and for those supported by Cancer Research UK is amazing.

“Swimming is a great way to get fit and raise money, so we’re really excited – we’ve been waiting two years to say we’ve completed Swimathon.”

Not only will taking part help to raise money, moderate exercise such as swimming can help build stamina, burn calories and keep a healthy body weight, which reduces the risk of a range of diseases including cancer. 

Swimming regularly is also gentle on the joints, canlower stress levels, reduce anxiety and depression, andimprove sleep patterns. 

Sign up for Swimathon 2022 at swimathon.org. Between 8-16 March use code SPRINGSALE35 for a 35% discount off the registration fee.

Call to improve care for dying people in Scottish hospitals

Marie Curie and the University of Glasgow are calling for action to improve the care and experience of dying people in hospitals. 

Following a series of seminars with leading experts undertaken before the coronavirus pandemic, the organisations found that despite examples of good care, many hospitals are still not identifying enough patients who could benefit from palliative care, and who are unfairly missing out on the right care at the end of life. With hospital services under pressure due to coronavirus this situation is likely to have worsened over the last six months.

With the Scottish Government’s Strategic Framework for Action running to 2021, Marie Curie and the University of Glasgow have offered 12 themed recommendations for consideration by the next Scottish Government, NHS Boards and Integration Authorities.

Maria McGill former CHAS Chief Executive supports the recommendations as her father was cared for in hospital prior to dying at home from heart failure and did not receive any palliative care.

She shares: “Dad was admitted to hospital through the emergency department via 999 ambulance twice in 10 months. There were missed opportunities. Had conversations been started with him, and importantly including mum and me, instead of the rush to discharge him two weeks later, the second admission might have been avoided and they would have both been in a better position to understand what was happening to dad.

“Early discharge planning and engagement with community services is key, but those conversations should involve the family. Our experience was that dad was told he was being discharged and we weren’t involved in the discussion.

“Staff in all settings having the ability to listen, really listen, and I really do understand that for some staff this might cause them anxiety about what they might hear, that they might not know what to do, or have the time to do anything. However, it is so important this opportunity isn’t missed. Even during that second admission 8 weeks before dad died – there wasn’t a recognition of dad’s deterioration.”

Marie Curie and the University of Glasgow are also calling for the Scottish Government to set aside £15 million for a nationwide Change and Innovation Fund to test new models of integrated care involving acute settings. This could help ensure patients get better care, but also improve efficiencies in care across community and hospital settings.

Marie Curie Head of Policy and Public Affairs Scotland Richard Meade said: “Hospitals are absolutely the right place for some dying people to be, but we need definitive action to ensure people get the care they need when in a hospital. More and more people are likely to present with multi-morbidity and complex needs and by 2040 it is expected that up to 31,000 people could be dying in a Scottish hospital.

“While it’s clear that there are some excellent examples of care across Scottish hospitals, we found a worrying level of inconsistency and gaps in care. It’s particularly concerning that knowledge of palliative care among healthcare professionals was patchy with some not understanding that it can be provided alongside curative treatments.”

Professor David Clark and Welcome Trust investigator at the University of Glasgow said: “Over the last ten years our research has consistently shown that on any given day almost one third of patients in Scottish hospitals are in the last year of life and 10 percent will die on their current admission.

“We are not grasping the opportunity to identify these people and to have conversations about their end of life preferences. Covid-19 has revealed the shocking absence of advance care plans in many cases, making it even more difficult to give the right kind of care in pandemic conditions”.

The 12 recommendations from Marie Curie and the University of Glasgow are:

  1. Scottish policy must actively support palliative care in acute settings and appoint clinical and executive leads in each NHS Board for palliative and end of life care.
  2. Hospitals are supported to provide consistently high-quality care that improves patient outcomes and experience.
  3. Everyone with a palliative care need should be identified if admitted to hospital or attending an outpatient appointment.
  4. Hospitals should ensure they have joined-up working across multi-disciplinary teams and specialities to provide palliative and end of life care.
  5. IT and technology must support patient centred care and enable those working with patients to have the most up-to-date information about that care and be able to provide appropriate input.
  6. An increase in the number of palliative care consultants, doctors and specialist nurses.
  7. Scotland should draw upon the power of volunteers to respond to the needs of communities and empower volunteers to support those with palliative needs and approaching the end of life in acute settings.
  8. All acute staff should be given training to provide care and support for those living with a terminal condition, coming to the end of life and dying in hospitals, as well their families, friends and carers.
  9. All hospital staff should have training and support in communication skills to support them in speaking with people with palliative care needs, and their families.
  10. A review of the number of available specialist palliative care beds across Scotland is required.
  11. Hospitals should also review the physical environment to ensure it is appropriate for dying people and their families.
  12. There is a need for robust data and evidence on patient and carer experience, to allow greater scrutiny of care standards.

The full report is available at www.mariecurie.org.uk/policy/publications 

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

Volunteers needed for Marie Curie’s Great Daffodil Appeal

Marie Curie, the UK’s leading charity for people living with a terminal illness and their families, is urgently calling for volunteers in Edinburgh to give just two hours of their time to hand out the charity’s iconic daffodil pins, in return for donations.

Volunteers like Stephanie Wint (above), from Edinburgh, will be supporting the Great Daffodil Appeal – Marie Curie’s biggest fundraising campaign, held every March.

This will be Stephanie’s 29th year volunteering, in that time raising around £20,000 for the charity. Incredibly, Stephanie spends her two-week annual leave collecting and even does it on her two days off!

Stephanie said: “I’ll do it until I drop! I get great satisfaction out of raising money and find that dressing up is a great way to get attention, my mantra is ‘just to look a little funny, raises a lot of money’.”

Heather Campbell, who has been a Healthcare Assistant at the Marie Curie Hospice, Edinburgh for 25 years, will also be out collecting with her two twin grandsons Sonny and Ollie, age 5 (above).

Heather said: “I love doing the Great Daffodil Appeal because it’s your chance to get out and meet people and tell them about the hospice. People don’t realise that we’re very dependent on charity. They think that we’re fully funded by the NHS. It’s always a shock to them, so I always say pop in an extra pound!”

In the next 10 years, more than half a million people will die in Scotland and of this number at least 75% will need end of life care.

The money raised from the Great Daffodil Appeal will help the Marie Curie Hospice, Edinburgh provide much-needed expert care to people with terminal illnesses, as well as support for their loved ones.

Marie Curie is hoping to raise £700,000 in Scotland this Great Daffodil Appeal.

Last year donations helped Marie Curie provide care to over 7,500 people living with terminal illness across Scotland. Marie Curie support isn’t just for people with cancer, other terminal conditions include heart and circulatory, Alzheimer’s (including dementia) and chronic respiratory disease.

Fiona Bushby Marie Curie Community Fundraiser said: “Whether you wear a daffodil pin in celebration, in solidarity or in memory of a loved one, you are joining with millions of others to help make sure all dying people get the care and support they deserve.

“Volunteering just two hours at a local collection is a great way to show your support to your local Marie Curie hospice and help us raise money to help make sure that we can be there for more people at the end of their lives.

“Collecting can be a lot of fun too.  You can do it on your own or with family and friends, and we will support you every step of the way. Volunteering is also an easy way to get involved in your local community and meet new people.”

To volunteer for Marie Curie’s Great Daffodil Appeal and give out the charity’s daffodil pins in return for donations, visit mariecurie.org.uk/collect or call free on 0800 304 7025.

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

Miles Briggs MSP backs Marie Curie Great Daffodil Appeal

Miles Briggs MSP has lent his support to Marie Curie’s big fundraising appeal month, the Great Daffodil Appeal, at an event at Scottish Parliament recently. 

Meeting with staff and volunteers from Marie Curie, the Conservative health spokesman was interested to hear about care and support provided to people living with terminal illness in Scotland.

Marie Curie supported over 8,600 people in Scotland last year through their hospices, nursing care and support services. In Miles’ Lothian constituency in addition to care provided at the Marie Curie Hospice, Edinburgh, Marie Curie Nurses made nearly 3,000 visits to people in their own homes in 2017/18.

Supporting the Great Daffodil Appeal by donating and wearing a daffodil pin in March helps Marie Curie provide vital care for people living with a terminal illness and support for their families.Generous Scots donate around £700,000 each year to the appeal.

Miles Briggs MSP said: “Marie Curie is an exceptional charity that supports thousands of Scots every year who have a terminal illness.

“This support would not be possible without all the generous donations to Marie Curie, a big proportion of which are given during the Great Daffodil Appeal in March every year.

“If you are able, please donate so that thousands of Scots who are living with a terminal illness can continue to be supported by Marie Curie.”

Susan Brown from Marie Curie said: “Thank you to Miles for his support. Behind every daffodil, there’s a story and by donating and wearing your daffodil today you’re helping us be there for more people at the end of their lives,uniting with millions who believe dying people should get the care and support they deserve.”

To find out more about the Great Daffodil Appeal visit 

mariecurie.org.uk/daffodil 

or call free on 0800 304 7025.

To donate £5 to Marie Curie, text DAFF to 70111

Picture: Warren Media