Dying Matters Awareness Week: What can you do in your community?
Each year in May, Dying Matters Awareness Week provides an opportunity to place the importance of talking about dying, death and bereavement firmly on the national agenda.
In 2018, the week will run from 14 – 20 May; Pilgrims Hospices will be sharing knowledge and experience to get people talking openly about death during the week.
In 2017, nearly 600 events took place across England, sharing information with over half a million members of the public, and it’s hoped that even more events will take place during this year’s awareness week. The theme for this year is ‘What can you do in your community?’, focusing on how people can encourage supportive conversations about death, dying and bereavement in schools, the workplace, hospices and other community areas.
With the End in Mind
As part of this nationwide week, author Kathryn Mannix will join Andrew Thorns, Pilgrims Hospices Medical Director, for a discussion about her book With the End in Mind, a powerful collection of stories taken from her clinical practice working with people who have incurable, advanced illnesses. The event will take place on Wednesday 16 May at 6:45pm at Grimond Lecture Theatre 3, University of Kent, Canterbury CT2 7NP.
This event is now fully booked; keep an eye on our website, Facebook and Twitter for post-event coverage.
Pilgrims Hospices will also host a Death Cafe on Thursday 17 May, providing an opportunity for people to come together in a relaxed informal café environment and talk about death and dying. It is not a bereavement or counselling session, rather a space to talk about a subject we often avoid as part of our daily conversations. The event takes place 5:30pm – 7:00pm at the Ann Robertson Centre, 55 London Road, Canterbury CT2 8HQ.
There are just a few spaces left for our Death Cafe, so book now if you’d like to come.
Talking about death makes it easier to plan for and to deal with it when it happens.
Mandy Williams, Pilgrims Hospices Head of Education and Training, explained: “Talking about death makes it easier to plan for and to deal with it when it happens. We would like to encourage as many people as possible to join us for a conversation over coffee and cake.
“Our goal is to create a friendly space where people can ask those questions about end of life care issues and coping with bereavement.”
Patricia Morley Award
Wendy Hills, Pilgrims Hospices Director of Nursing and Care Services, will soon be accepting applications for this year’s Patricia Morley Award for Improvements in End of Life Care. The award is open to nurses and allied healthcare professionals who work within Health, Social Care or Pilgrims Hospices in east Kent. This will be the second year that care professionals can submit a project plan or model of care that will improve end of life care.
The successful applicant will receive £1,000 towards the implementation of the project that will make a difference to patients being cared for in the community.
“Sharing information, bringing communities together and challenging peoples’ perceptions and concepts regarding living and dying well, is making a difference within our community”, Wendy explained.
Patricia Morley was the incomparable and inimitable face of nursing at the Kent & Canterbury Hospital for many years. She worked tirelessly to promote best practice in nursing and was a long-standing Trustee of Pilgrims Hospices.
Last year’s award winner, Jan Hyde, End of Life Care Facilitator for East Kent Hospital University Foundation Trust (EKHUFT), celebrates the roll out of the winning project – Comfort Care Packs – across three hospital sites in east Kent.
Comfort Care Packs
Jan told us: “The Comfort Care Packs have been designed to support the essential comfort and dignity of family members staying overnight with loved ones. The pack content is aimed at reducing anxiety in the relative who has no essential items to use but doesn’t want to leave the patient’s bedside. Some toiletries, a toothbrush and toothpaste are just a few of the items that can really make a difference to families at such a sensitive time.
The Comfort Care Packs have been designed to support the essential comfort and dignity of family members staying overnight with loved ones.
Last year saw the launch of the Compassion Project, a collaborative project between East Kent Hospital Foundation Trust and Pilgrims Hospices to promote a culture of compassion at end of life within the acute hospital settings at EKHUFT.
The partnership between the two east Kent health providers is improving end of life care for patients across east Kent. It continues to support hospital staff on more than 50 east Kent wards and departments, to give dedicated support to patients in the last days of life and work compassionately with their families.
All hospital staff who come into contact with patients and families at this incredibly difficult time are given training by Pilgrims nurses, and the hospital’s own end of life care experts, in the use of the Compassion symbol and are being encouraged to ensure it becomes part of the normal ward routine and culture when caring. The Compassion symbol is displayed discreetly on hospital wards when a person is in the final stages of life, providing hospital staff with an indicator to proceed with increased sensitivity and ensure visitors to other patients are respectful and courteous towards the patient and family in such a difficult circumstance.
Annie Hogben, Compassion Project Lead for Pilgrims Hospices, explained: “It’s so important to raise greater awareness of end of life care in hospitals. Pilgrims are working closely with hospital care staff to identify even further opportunities to ensure we provide expert services to patients and families. The collaboration is proving a continued success.”
We host Time to Talk community events throughout the year for the general public, aiming to open up the conversation about death and dying; with film screenings, poetry readings and Death Cafes and much more, there’s something for everyone.
Pilgrims Hospices recognise that carers play an essential role in the journey of their patients, and they believe friends and family should be supported throughout. Their Wellbeing and Social Programme offer carers’ programmes and individual packages to support with the practical and emotional issues that people may experience in a caring role. Here, Yvonne Riley from Whitstable shares her experience of that support.
I’ve seen hospice care from both sides, as a carer myself and as a friend.
I first accessed Pilgrims carers’ services when my partner was cared for in the hospice at the end of his life; that was ten years ago. Now I’ve come back to support my close friend, Betty Mount, who cares for her husband, Ted, who has cancer. Betty has a visual impairment so I drive her from her home in Hillsborough, Herne Bay and come to the hospice with her to take down any information she needs.
My own experience with Pilgrims was amazing. They made me feel important, which when you are a carer you really don’t. Now, with Betty, Pilgrims is giving her the same excellent support and with even more services available.
My own experience with Pilgrims was amazing. Now, with Betty, Pilgrims is giving her the same excellent support and with even more services available.
When Betty was first invited to come to Pilgrims for a Carer Wellbeing day she wasn’t keen. We’ve been friends for 30 years and have been through everything together, so I said I’d join her.
As soon as we came through the door we felt at home. The tea was on, there was a lovely smell of lunch and we were welcomed by volunteers. It didn’t feel clinical, it felt normal – like Betty coming to see me at home but with a lot of other people there, too.
By the end of the first session we had made lots of new friends! You feel safe. It doesn’t matter whether you feel like laughing or crying, no one will judge you.
Pilgrims nurses pop to see us in the Therapy Centre and see Betty at home, too. The community nurse visits Ted to keep an eye on his medication and make sure his symptoms are managed.
As soon as we came through the door we felt at home. The tea was on, there was a lovely smell of lunch and we were welcomed by volunteers. It didn’t feel clinical, it felt normal.
There’s been a change in Ted as well; he is much more mobile, and even comes and uses my exercise bike – we say ‘it’s a miracle’.
Betty’s been given the Pilgrims Advice Line number to call any time. You might only have a really simple question, but the Advice Line means that you can ask and you don’t feel alone.
Pilgrims gives you a release as a carer – some time to look after your own needs without feeling guilty. It’s been wonderful to see how much Pilgrims support has given Betty more confidence in supporting Ted.
Pilgrims Carers Wellbeing Programme is just one of the sessions held regularly at our Therapy Centres in Ashford, Canterbury and Thanet. If you or someone you know is coping with a life limiting illness and you think you may benefit from Pilgrims free services, talk to your GP or Healthcare Professional about your options or click here to read about our Wellbeing and Social Programme.
8th March 2018
Always Loved Tribute Funds: Natalie’s story
After Natalie’s mum, Ronda Evett, was cared for at Pilgrims Hospice Thanet in 2017, she and her family decided to set up an Always Loved Tribute Fund in her memory. Here, Natalie shares how this helps the family to collect memories and photographs of Ronda in one place, as well as providing a secure way for family and friends to donate directly to Pilgrims Hospices.
Much of what has happened in the last six months has been a blur to me. This, of course, does have its advantages when you lose a mum like ours; it can buffer the pain of the loss, but coming back to reality is a hard shock and continues to be so. Mum was one of those beautiful people in life that no one ever forgot; she enriched everyone’s lives, far and wide, with great big outstretched arms that were never-ending with time, love and compassion for everyone.
Mum always loved her garden and flowers. During her illness many flowers arrived at the house; each time I would open them for her, she would look at them and then cry. ‘Oh Nattie, people are just so lovely and caring’, she would say through the tears. She was always thinking about the efforts other people took, but never her own. Towards the end she wanted people to stop sending flowers, saying the smell was ‘too strong’ and ‘too close’. I think this was one of her ways of letting go, letting people know it was soon to end. It was her way of telling people to let go of her, to ease their pain.
Our Much Loved Tribute Fund allows us to see thoughts and messages that people have written about Mum and to add photos. I’m sure we will use this page for years to come, showing it to our children and remembering Mum on special days by adding to the site.
Charity was very close to Mum’s heart and she supported many organisations. We knew she would want donations for a charitable cause rather than money spent on flowers (which she didn’t like the smell of anyway and had clearly told us so!)
Our Much Loved Tribute Fund was set up whilst we were planning Mum’s memorial service; I don’t really remember how it came about, it must have been in one of ‘the blurs’ that I set it up online.
It has been invaluable to us, and to family and friends as a secure way to donate directly to Pilgrims. We’re really proud of what we have achieved financially, and continue to raise funds through various activities. Our Much Loved Tribute Fund allows us to see thoughts and messages that people have written about Mum and to add photos. I’m sure we will use this page for years to come, showing it to our children and remembering Mum on special days by added to the site. Many people spoke at her memorial service, and we are currently putting these beautiful words on to the site so that everyone can have access, keeping thoughts of Mum very much alive.
Pilgrims made a heartbreaking time for us more bearable than we can ever express to them. They continue to support my sister and I now, as well as our children.
At the moment our Much Loved Tribute Fund is almost a focal point for us as we are about to embark on various coffee mornings in France, where I live, to support Pilgrims, and the Paws 4 Pilgrims dog walk in Deal on 25 March 2018. It is definitely helping us to do the best that we can to raise funds for Pilgrims, who were astounding in their care, compassion and professionalism for our darling Mummy. Pilgrims made a heartbreaking time for us more bearable than we can ever express to them. They continue to support my sister and I now, as well as our children. We are forever in debt to them.
If you’ve visited Pilgrims Hospices website in the last few weeks you might have noticed something a little different; we’re really excited to introduce a brand new Pilgrims website for you to explore.
The biggest reason for the change is to provide better information about our care. As soon as you visit the new website, you’ll see we’ve changed the experience for visitors. One of our key goals is to encourage people with an incurable illness to come and talk to us sooner; our new website is designed to break down some of the fears that can get in the way of this.
Our homepage is now all about our services; it uses positive language and images to show that, as well as helping people at end of life, we also help people to do a lot of living, too.
You can watchvideos and readblogs from our service users talking about what it’s really like to use Pilgrims services, and there’s new information that patients and carers can download.
It’s great to see news of Pilgrims Compassion Project with East Kent Hospitals has people talking this week.
At the heart, this partnership is to promote dignity, respect and compassion at the end of life – something that’s central to Pilgrims mission.
The idea grew from a concept championed at Hospice UK’s national conference by hospices around the UK, including Saint Francis.
We began developing our own programme for east Kent in 2016. We started by creating our small ‘Compassion Symbol’, based on the Pilgrims Hospices logo.
A discreet way to encourage conversations
The idea is that the symbol can be displayed discreetly on hospital wards when a person is expected to die within the next few hours, days – or when a person has just died. It’s used as a gentle way to encourage an atmosphere of quiet and respect at this significant time for families.
All hospital staff, clinical and non-clinical, who come into contact with patients and families at this incredibly difficult time are given training by Pilgrims nurses and the hospital’s own end of life care experts in the use of the Compassion symbol. Staff are encouraged to see this as part of the normal ward routine and culture when caring for patients and their families.
Why is this necessary? All hospitals have a raft of end of life training in place for their staff but this is a unique chance for them to partner up with our hospice nurses. Pilgrims nurses deliver end of life care 24/7 and can be a great source of knowledge and support in caring for patients and families. The project also extends training to non-clinical teams so they are aware of the impact that simple small acts of kindness can have on creating the very best experience possible for families at the bedside when someone is dying.
Talking about death and dying is, naturally, still something we find hard to do even in today’s society. For some, even the idea of a discreet symbol to say someone is at the end of their life is not something they feel comfortable thinking about; this is exactly why we feel projects like this are needed – to help make some of those conversations easier.
One of the hardest things for families who are coping with the impact of caring for a dying relative can be talking about what’s happening; knowing what to say and do. Used at the right time and by trained staff, the Compassion symbol can be used as a soft and discreet ice breaker to start off some of those conversations at a time that’s right for individuals so they know there is support available if they want it. The symbol is only ever used if the patient and their family has given their consent, and the feedback we have been getting from families is that it has made a real difference to their experience
A subtle reminder for hospital staff
As important, perhaps, is the fact that the Compassion symbol acts as a subtle reminder to staff in hospitals who may be going about their working day – clinical and non-clinical – to be sensitive when encountering people who may be grieving or distressed.
Influencing the end of life experience of more people
Each year Pilgrims Hospices gives hands on care and support to more than 2,400 people with an incurable illness, and their families and friends. We support people wherever they need us – on our wards, in our Therapy Centres, in patients’ homes and in community settings like hospitals and care homes.
While we have a duty to offer hands-on hospice care, Pilgrims Hospices is also committed to having a positive impact on the experience of end of life care for as many people in east Kent as possible. To achieve this it’s vital that we work in very closely with other health and social care providers – including hospitals. This project came from that desire.
Since being piloted on 9 east Kent hospital wards back in May 2017 we have seen the Compassion Project’s momentum grow. From small beginnings during the piloting phase, to reaching more than 880 staff on 50 clinical and non-clinical wards across east Kent.
I hope that, with some of the conversations this week about the Compassion Project, its reach will continue to grow so that together with hospital staff we can continue to be there for the next family that needs us.
East Kent Hospitals has formed a partnership with Pilgrims Hospices that’s improving end-of-life care across the Trust’s hospital sites.
Known as the Compassion Project, the initiative promotes dignity, respect and compassion at the end of life – represented by a Compassion symbol in the form of the Pilgrims Hospices logo.
Consultant nurse for palliative care and East Kent Hospitals’ end-of-life clinical lead, Sue Cook, said: “For understandable reasons, end-of-life care is a topic that many people shy away from. But caring for people until the end of their lives is integral to the values of the NHS and all it stands for.
“Those of us who work in the NHS have a duty to ensure that our patients are cared for with dignity, respect and compassion until they die.
“That’s why the Compassion Project – and its symbol – is so important to us and all who help those approaching the end of their lives.”
Wendy Hills, Pilgrims Hospices Director of Nursing and Care, said: “Pilgrims has over 30 years of experience working with families at some of the most difficult times of life. We are committed to having a positive impact on the individual’s experience of end of life care for as many people in east Kent as possible. This project came from that desire.”
The project was funded thanks to a legacy donation from the family of Pat Morley, a past Kent and Canterbury Senior Matron and Pilgrims trustee. Pat worked tirelessly to promote excellent nursing within the profession she loved. She also volunteered for many years as a Trustee of Pilgrims Hospices, where her experience was invaluable.
Pilgrims has over 30 years of experience working with families at some of the most difficult times of life. We are committed to having a positive impact on the individual’s experience of end of life care for as many people in east Kent as possible. This project came from that desire.
Wendy Hills, Pilgrims Hospices Director of Nursing and Care
Wendy added: “Together with EKHUFT, we are delighted with the success of the Compassion Project throughout east Kent’s hospital wards so we can support as many people as possible to live well until the very last moment of their life.”
The Compassion symbol is displayed on wards when a person is expected to die within the next few hours or days – or when a person has just died. Its display is to encourage an atmosphere of quiet and respect at this significant time.
On seeing the symbol, visitors to a ward are asked to be considerate in their behaviour and activity, including restricting the use of mobile phones. Visitors are also asked to be sensitive when encountering people who are grieving or distressed.
Following a conversation with the patient and/or their family, the Compassion symbol is shown at ward stations, on ward boards and on bedside curtains.
The symbol is also used after the patient has died. Relatives are given their loved one’s property in a branded Compassion bag to ensure continued support and sensitivity.
Since its launch in June 2017 the Compassion Project has been rolled out on 9 wards across the Trust initially, and has gradually been cascaded to over 880 staff in more than 50 clinical wards and departments where patients who are dying, and their families, are being cared for.
How a loved one dies can have a profound and long-lasting impact on those who are left behind. Therefore it’s essential that staff and visitors are sensitive to the needs of the person who is dying, and their loved ones, at all times.
Annie Hogben, Education Project Lead for Pilgrims Hospices
All staff, those in clinical and other roles, who come into contact with patients and families at this incredibly difficult time are being given training in the use of the Compassion symbol and are being encouraged to ensure it becomes part of the normal ward routine and culture when caring for patients and their families.
Education Project Lead for Pilgrims Hospices, Annie Hogben, said: “How a loved one dies can have a profound and long-lasting impact on those who are left behind. Therefore it’s essential that staff and visitors are sensitive to the needs of the person who is dying, and their loved ones, at all times.
“The Compassion Project and its symbol represent a patient-focused and relative-focused approach to end-of-life care. This acknowledges clinical reality, but also ensures that we never neglect dignity, compassion and emotional needs. The collaborative working over these past months has been very rewarding for everyone taking part. Staff at the Trust have really embraced the project, using their own ideas and creativity to help make this a success. Ultimately, thanks to everyone’s commitment we have made a huge difference for patients and their families.
Posters have been displayed throughout the hospital wards and departments to let the public know more about the project and the use of the symbol.
“This small, unassuming sign made a big difference”
Andrea Reid, who lives in Folkestone, Kent gained first-hand experience of the positive impact of the Compassion symbol when her aunt was cared for in an East Kent hospital.
“The care and compassion shown to my aunt and her family when she was being cared for in hospital was clearly evident from the moment that I first visited, took a seat and held her hand. Once my family had all arrived and those difficult but sensitive discussions had taken place, a bed in a side room was found so we could visit and stay the night without worrying about disturbing the other patients on the ward.
We were able to take up the space within the room without feeling that we were in the way, talk freely, laugh together and have quiet moments of reflection, all in the knowledge that the staff were there if we needed them but without unnecessary intrusion – quality time that we were really able to make the most of.
Andrea, who experienced the Compassion Project first-hand
“The Compassion symbol appeared at the doorway. This small, unassuming sign was making a big difference to those approaching the room.
“Despite being near the ward entrance, there didn’t seem to be much general disturbance, as staff from porters to doctors went quietly about their daily business. The nursing staff all hesitated at the door, explained why they needed to come in and gave us time to either leave the room or move out of the way with a calm, unhurried air. The cleaners ensured that the room was kept hygienic and pleasant without being intrusive. At one point the consultant reviewed my aunt from the doorway as there was no need for any hands-on intervention at that time, and so with quiet respect and a gentle nod he checked that all was well and moved on.
“The difference that this made to us all, my aunt included, was only really evident on reflection afterwards. Such was the discretion and respect afforded to us that the care and general day to day business of the ward almost faded into the background as we sat and chatted about old times and even celebrated my aunt’s 80th birthday the day before she died. We were able to take up the space within the room without feeling that we were in the way, talk freely, laugh together and have quiet moments of reflection, all in the knowledge that the staff were there if we needed them but without unnecessary intrusion – quality time that we were really able to make the most of.
“I think that our hospital staff are often working in a pressured and high-speed environment, but the small and unassuming Compassion symbol is just enough to trigger a pause and a moment’s consideration for those dealing with the worst news possible, and to give staff the permission not to intrude on those valuable last moments unnecessarily, but to be discreetly available as the need arises. My impression was that this was embraced by staff at all levels.”