Tag: end of life care

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

‘Beautifully Tragic’: True love story couple cared for together during final days

The daughter of two patients who were able to spend some of their final days together at Inverclyde Royal Hospital (IRH) has praised staff for their compassion and for recognising ‘a true love story’.

Margaret O’Brien and her husband Alfie O’Brien sadly both required end of life care at the same time earlier this year, after it was discovered Margaret had terminal brain cancer, while Alfie was experiencing organ failure in his lungs, liver and heart.

The pair, who lived in Skelmorlie, were inseparable during their 58 years of marriage, travelling the world together and helping daughter Vanessa look after their beloved grandchildren Ben, 19, and Carla, 21.

When both became unwell in January, they were initially in separate wards in the IRH, but after medical staff noticed conditions worsening, they decided to make arrangements for the pair to both be together while they received treatment.

Alfie was admitted to hospital on January 4, after displaying symptoms of pneumonia, a condition he had most winters. But, following tests, it was discovered his organs were failing. While he was in hospital Margaret stayed with Vanessa, who began to notice her mum was getting a bit confused and took her to her local GP Dr Rai, who advised that he wanted to refer her for a brain scan.

Vanessa said: “I cannot thank the staff enough for everything they did for our family and for my mum and dad. The efforts were amazing, both consultants Dr Maycock and Dr Simmons were absolutely brilliant.

“They kept us up to date with exactly what was going on and even worked together to explain the situation of what was happening with mum to my dad in such a compassionate and caring way.

“When both my parents were at Inverclyde Royal Hospital they were initially in different wards, after it became clear it wasn’t looking good for either of them a staff member asked me if I thought they would like to be together in a room they had found. I thought that was amazing, it was a great idea.

“My mum and dad were inseparable, you didn’t get one without the other so getting the chance to have some more time together at that time, that’s just incredible. It was huge for the family as it meant we could always be with them too.”

After some time together at the IRH, the couple were moved to Bridge of Weir Care Home, where Margaret passed away by her husband’s side.

Ten days later, on February 27, at home with his family, Alfie passed away. The family were able to arrange a funeral for the couple, in March, with a double coffin, meaning they were back together.

Vanessa said: “I would say this has been beautifully tragic, I think that’s the best way of putting it. It’s a strange feeling, I can’t tell you how at peace I am. My parents had everything how they wanted it, they were able to spend some of their final precious moments together at the IRH then at the care home.

“We have experienced every part of the care services during this time and I cannot speak highly enough of everyone. From the consultants who treated and comforted my parents, the nursing teams who arranged the room for them and provided such great care, to the GP Dr Rai and the care home staff, everyone went above and beyond for our family.

“My parents were legends, I think staff at Inverclyde Royal Hospital recognised the true love story that was their marriage and relationship. Our whole family have lost our best pals, which is hard, but we’re comforted to know they were together throughout all of this. The kindness we have experienced will never be forgotten.”

Melanie McColgan, NHS Greater Glasgow and Clyde’s director for Clyde said: “I would like to pass on my sincere condolences to all of the O’Brien family. Our entire team were moved by Alfie and Margaret’s story and were honoured to be able to provide some comfort to them and to the entire family during an emotional time.

“Our patients, their families and the whole IRH community are so important to our staff, who continue to go above and beyond for those they care for and we are touched by Vanessa’s kind words.”

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 in Scotland caring on the frontline

The charity Marie Curie is geared up to care for hundreds of additional dying patients requiring end of life care, in order to relieve the unprecedented pressure on the NHS during the Coronavirus crisis.

Marie Curie in Scotland needs to raise over a quarter of a million pounds a week (£2.5 million UK-wide) to continue to run its essential frontline services, at a time when its ability to generate this money has been seriously compromised.

Given the choice, people overwhelmingly say they would prefer to die in their own home, or in a hospice, rather than a hospital. 

People who are dying are able to leave hospital quickly, if the right package of care is in place and it is safe to do so. Marie Curie are experts in providing that care.

Now more than ever, dying people who do not want to be in hospital need to be moved to a more appropriate setting, as precious beds in critical care units are urgently required for patients who need lifesaving treatment for Coronavirus.

Marie Curie can help, but only if it continues to raise the donations it needs to fund its vital work. 

Marie Curie Head of Community Fundraising in Scotland Debbie Mooney said, “This is a stark warning that Marie Curie desperately needs more donations if it is to continue caring for dying people and help the NHS cope with the Coronavirus crisis.  

“The people of Scotland are known for our generosity and kindness, which we’ve seen in abundance over the last few difficult weeks. We need the public to rally around our hospices and nurses now and give whatever they can. It has never been more critical.”

Marie Curie’s Chief Executive Matthew Reed said: “At this time of national emergency, Marie Curie Nurses and frontline staff are needed more than ever as the NHS is put under ever greater strain. We’re ready and geared up to help, with hospice beds and nurses on standby.    

“Sadly, some people’s lives will be shortened by Coronavirus, so the need for end of life care will be greater. Marie Curie can meet this need, and in doing so will help free up intensive care beds needed for Coronavirus patients.

“But just as we want to help, our income has been decimated.  We need donations urgently to keep our Nurses and Hospice staff on the frontline.

“Unlike other healthcare providers, Marie Curie is reliant on donations from the public to survive. Every week the charity needs to raise £2.5million to care for the tens of thousands of people who require nursing and hospice care.  

“At the moment, our ability to fundraise is seriously compromised. Events are being cancelled, and we’ve had to close our Shops.  That is why we have launched an emergency appeal to make up the shortfall, and ensure the charity can care for more dying patients, support the NHS and ultimately save lives in the weeks and months ahead.”

Matthew added: “We are all in this crisis together and already we are seeing how the public in this country is rising to support each other and the most vulnerable.  Please donate now.”

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If you, or someone you know, is affected by a terminal illness and concerned about Coronavirus, our Support Line team are ready to help with the information you need when you need it. Call free 0800 090 2309*.

Due to increased demand, Marie Curie has extended its service to 7 days a week: Monday to Friday 8am to 6pm, Saturday and Sunday 11am to 5pm. Your calls may be recorded for training and monitoring purposes.

You can also find more information on our website: mariecurie.org.uk/coronavirus