Let the music play on: Neil creates lasting legacy with the Blackbird Project
In 2019, Pilgrims Hospices launched the Blackbird Project, enabling patients to record messages for their loved ones to keep forever on special blackbird-shaped USB sticks. The project was started by Sheena and Nick Jackaman, whose son Ben received Pilgrims’ care.
When Neil Wright from Deal was referred to Pilgrims after being diagnosed with cancer, the charity helped him to make a recording for his wife, Pamela. Here, she shares why the Blackbird Project is so special.
Neil
When my father died suddenly in 1984, I longed to hear the sound of his voice again. We had a reel-to-reel tape recorder from childhood that Dad would use to sing and talk to us. Unfortunately, the tapes were old and fragile, so they became twisted and ravelled up when they played, and I was very disappointed to find they wouldn’t work.
Sadly, my late husband, Neil, was diagnosed with cancer in September 2019. I cared for him at home, and when he was unable to stand and walk, we had a bed downstairs so he could look out on his garden, which he loved. We liked watching the blackbird that visited there.
We became aware of the Blackbird Project when Neil was referred to and supported by Pilgrims Hospices, and saw the brochure they had designed and produced. During this time, in April 2021, Sara Hennessy, an occupational therapist at the Thanet hospice, came to our house and helped Neil to record a message for me that I could listen to in the future. I think this is an excellent service, giving terminally ill patients the opportunity and assistance to leave a personal message for their loved ones on a blackbird-shaped USB stick.
Neil was a talented musician and he contributed greatly to the community, giving his time freely to support the arts, theatre events and festivals in Kent, particularly in his hometown of Deal. Neil knew the Jackaman family, having taught Ben and Anna, his sister, during his career, and was sad to hear that Ben passed away aged 34 from cancer at Pilgrims Hospice Canterbury.
I have listened to my dear husband Neil’s Blackbird recording and it is wonderful to hear his voice. It brings me great comfort and is a treasured possession.
Pamela
As Neil’s illness progressed, we talked about Ben’s legacy and decided that when the time came, donations kindly given in remembrance of Neil should go to the Blackbird Project as it is such a wonderful idea.
On 11 August 2021, Neil was admitted to the Thanet hospice for pain relief, where he stayed for three weeks. All the staff were very compassionate and caring; they provided a welcoming and comfortable environment for us to be together during such a difficult time. Neil returned home with a care plan for support in the community.
His passion for music stayed with him throughout this time, until sadly he passed away at home on 12 October 2021.
I have listened to my dear husband Neil’s Blackbird recording and it is wonderful to hear his voice. It brings me great comfort and is a treasured possession. I’m sure many other patients and their loved ones who Pilgrims care for will continue to benefit as much as I have from this project in the future.
Pilgrims Hospices cares for thousands of local people each year, free of charge, during the most challenging time in their lives. They offer care and support in people’s own homes, in the community and in their inpatient units as well as running a 24-hour advice line.
This year, the much-loved local charity is celebrating its 40th birthday, with a guaranteed prize fund of £4,040 including a first prize of £2,040. All prizes will be sent out to the lucky winners in time for Christmas! They are asking the local community buy a ticket or two to help with continued support for Pilgrims’ end-of-life patients across east Kent.
Shiralee Riddell, Pilgrims Lottery Manager told us: “We recently posted tickets to our Pilgrims Lottery members and supporters, the response so far has been very encouraging.
“We care for people with illnesses that cannot be cured, our services are provided free of charge for our three sites in Canterbury, Ashford and Thanet, within our Therapy Centres and in patients’ own homes; our care is also extended to families and carers .”
£25 will pay for an hours’ specialist nursing care in one of our in-patient units.
£15 goes towards mini toiletries for a patient who needs them.
£12 gives a patient staying in one of our hospices a delicious meal on Christmas day.
If you are not on Pilgrims’ regular mailing list and would like some tickets, please:
Shiralee added: “Please do take part; your generous support is greatly appreciated by our patients and their loved ones, and it makes an incredible difference at the most difficult of times. Thank you.”
Please support your local hospice by calling Shiralee for your tickets. In order to make sure tickets are included, counterfoils must be returned by 8 December, the Christmas Draw takes place on 15 December 2022. Over 16s only, full T&Cs are on our website:
Pilgrims Hospices is dedicated to proving skilled and compassionate care, free of charge, to people living with an incurable illness in east Kent. Pilgrims vision is that people with a life-limiting illness are supported and empowered to live well in mind and body, making the most of the time have. They care for thousands of patients and their families each year, at their three inpatients units in Canterbury, Thanet and Ashford, their Therapy Centres or in patients’ homes.
12th October 2022
Trees of Love: Sally’s story
Sally Atkins supports Trees of Love in memory of her dad, Robin.
Here, she shares why remembering Robin at Trees of Love is an essential part of her year.
My dad, Robin, was a well-liked member of the community in Sandwich, where he spent most of his life. A postman and member of the local cricket club, he loved his family dearly and would always do what he could for them.
Sadly, he was diagnosed with prostate cancer, living with it bravely for a couple of years before it took hold aggressively. In June 2007, my wonderful dad lost his battle, with great dignity.
Sally’s dad, Robin
Dad was cared for at the Thanet hospice at the end of his life, with Mum and myself, always at his side. We cannot fault the care he received. Calm, peaceful and welcoming, the staff cared for us all with such kindness, allowing us to sleep by his bed, and make the most of every moment together.
Trees of Love is special to us as a family. After two years, I felt I wanted another way to remember my dad, moving forward with my grief. I found out about the Trees of Love service and came along to see what it was like. Now it’s very much part of my yearly calendar, and I’ve been attending for nearly nine years. Even after all this time, it still moves me, and I have a few tears during the service. The beautiful trees are all lit up, and I take photographs of the lights and Dad’s dove, to share with my family, especially ones who live far away.
Pilgrims is such a worthy cause and I will continue to support them and all they do for others. With events on all throughout the year, there’s something for everybody, and I look forward to attending Trees of Love this year, and remembering my special dad.
Trees of Love events will take place at our hospices in Ashford, Canterbury and Thanet at 5pm on Saturday 3 December 2022.
You can also post a message and a photo in memory of your loved one on our online Trees of Love memory wall.
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 Programme.
Thank you Mr Mayor for your marathon support
Councillor and The Mayor of Hythe, Jim Martin, took to the Kentish countryside to run the Virtual London Marathon on Sunday 2 October 2022.
While over 40,000 runners took part in the London event, another 10,000took to their local streets, parks and countryside to test their stamina against the mighty 2,624 marathon miles to be part of the prestigious event, many raising funds for causes close to their hearts.
The Right Worshipful Town Mayor who is also the Speaker of the Cinque Ports, was fundraising for Pilgrims Hospices, and achieved a very impressive finishing time of 5:30.27 hours raising a fantastic £3,500 for end-of-life care for the local community.
He said: “I am a regular runner, along the canal path or along the promenade, and I have completed 25 full Marathons, including 20 consecutive London Marathons (don’t ask me why!)
“The virtual marathon took me along the South Coast in Hythe where I live, using the Royal Military Canal as my route. As much as I love the built environment and streets of London, I can assure you that running in Hythe, ‘where the countryside meets the sea’, by the canal, beats running through Shadwell!
“This has been my first marathon running as The Mayor of Hythe and the Speaker of the Cinque Ports. And…. just to note, I was not running in my robes and chain!”
Community is very important to me, I was pleased to raise awareness of the care and services provided by Pilgrims, and highlight the important work they do for those in need.
Jim Martin, Mayor of Hythe
Kate Duddell, Pilgrims Hospices Fundraising Manager said: “Thank you The Mayor of Hythe for supporting local end-of-life care. Every year we are glad to say thank-you to the amazing individuals who train so hard to be part of this event and raise such staggering amounts of money to help us provide our specialist care. Your many miles of muscle power and dedication is really helping to make a difference to those who need care the most.”
Jim has lived in Hythe since 2007, when he and his wife moved from South East London to their home in Seabrook.
He explained: “Community is very important to me, I was pleased to raise awareness of the care and services provided by Pilgrims, and highlight the important work they do for those in need. With support from family, colleagues and the community, I’m delighted to have been able to raise such a substantial figure for Pilgrims. With 80% of Pilgrims Hospices’ funding being voluntary contributions, their support cannot be overstated.
“Thank you, everyone for your support, the weather was very wet and I finished completely drenched, but delighted to finish in good form.”
Pilgrims Hospices is dedicated to proving skilled and compassionate care, free of charge, to people living with an incurable illness in east Kent. Their vision is that people with a life-limiting illness are supported and empowered to live well in mind and body, making the most of the time have. They care for thousands of patients and their families each year, at their three inpatient units in Canterbury, Thanet and Ashford, their Therapy Centres or in patients’ homes.
Mandy retires after 47 years in nursing, a credit to her profession
In September 2022, Pilgrims Hospices said goodbye to one of its much loved nurses, Mandy Lawson, as she retired to spend more time with her children, grandchildren and her variety of animals.
Mandy from Minster, who trained as a nurse in 1975, leaves a legacy of 47 years in nursing and said: “It has always been a privilege to be a nurse and to care for those in need.”
She explained: “I retired from my role in the NHS more than 11 years ago; however, after just three months, I was missing the profession so much, I decided to look for a new position and returned to my beloved nursing.
“I’ve worked in surgical nursing wards, A&E and many others, also spending the last five years in the NHS as a community matron. In 1993, I left hospitals and worked for many years as a district nurse in the Canterbury, Ashford and Thanet areas and travelled a great deal, which I enjoyed very much.
“I have seen many changes throughout my career. When I started nursing it was on what was known as Nightingale Wards, they were very long with beds either side, we wore frilly hats and starched pinafores, and the IVs were given in glass bottles. A far cry from our modern equipment in today’s healthcare services.”
We are passionate about the care we provide and our team has won awards for projects about changing practices in areas of pressure wound prevention.”
Mandy
Mandy continued her career as a registered nurse when she joined Pilgrims Hospices and worked on the ward at the Thanet hospice, before specialising as a Tissue Viability Nurse and now holds the position as team lead.
“Managing patients’ comfort and being able to manage pressure ulcers and wounds is vitally important. We are passionate about the care we provide and our team has won awards for projects about changing practices in areas of pressure wound prevention.”
Mandy added: “I’ve had an amazing career in nursing, and enjoyed my time working with the hospices. Nursing in palliative care has been a great experience and one that I would not want to change.
“I was a veterinary nurse with a background in dairy farming, and worked on a dairy farm in Upstreet part-time when I was at school. I gained a place at agricultural college, that led on to me doing my veterinary nurse training. However, I didn’t enjoy veterinary nursing. My mum was a nurse, she told me there were interviews taking place for nurse training and why didn’t I go for it… I got on the course and did my nurse training, hands-on at Margate hospital, and the rest is history.
I have also experienced Pilgrims Hospices care from the side of a patient too. My mum, Doreen, was cared for at Pilgrims Hospice Thanet around 14 months ago. Our family will be eternally grateful for the support and care offered by Pilgrims; everyone from carers, catering staff, support services and volunteers were amazing.
Mandy
“I’m a busy lady, and I’m not sure how I’m going to feel about not being a nurse, it’s been my life for so long, it will be a new experience.
“I’m looking forward to spending more time with my children, and grandchildren. It will be lovely to spend more time on my hobbies, one of which is singing in a local choir the ‘Village Voices’ in Minster where I’ve lived for 20 years. We usually sing for fundraising, and we’ve raised many £100s for local charities and causes. I have fun with a local dance group, the Mid-Life Movers and I’m also a member of the local Salvation Army, so there’s plenty to keep me busy.”
Alongside the many activities, she’s a keen animal lover and owns a horse and a small flock of sheep. Mandy explained: “I have a friend who breeds and shows livestock, and I took an interest in the preparing, showing and generally enjoy the farm life, I thought I might be a farmer when I was young. When I was 50, she bought me my first sheep, a beautiful Jacob, a very handsome black and white, I’m now the proud owner of a small flock, which I look after on a small holding in Manston.
Mandy
“I’m also really interested in conservation and rewilding, and hope to volunteer to help Wildwood with the new bison project. I’ve already undertaken some ecology study days at Wildwood ready for retirement. I’m an early to rise person, as I have the animals to attend to, so between them and the grandchildren I will be keeping busy.”
Mandy went on to say, “I have also experienced Pilgrims Hospices care from the side of a patient too. My mum, Doreen, was cared for at Pilgrims Hospice Thanet around 14 months ago. Our family will be eternally grateful for the support and care offered by Pilgrims; everyone from carers, catering staff, support services and volunteers were amazing. Dad cared for Mum at home after she had a stroke, Pilgrims’ Hospice at Home team were amazing in her final days at home. Pilgrims welcomed us with open arms when she needed the hospice for her final care.
“This year we attended the Sunflowers Memories day to remember her, it was indeed a very special day, which we will treasure in our memories.”
Hospice Care Week is an annual event where we recognise and celebrate Hospice UK and hospice care nationwide. It’s an opportunity to show the world the value of support, of care and of what matters to us as individuals at the end of life when we need it most.
Pilgrims Hospices cares for thousands of local people each year, free of charge, during the most challenging time in their lives. They offer care and support in people’s own homes, in the community and in their inpatient units as well as running a 24-hour advice line.
11th October 2022
End of Life Doulas: Who they are, what they do and how they can help
Photograph: End of Life Doulas in training
Doulas are often known for supporting in pregnancy, birth and the postpartum period – but a variation of this vital role exists for those approaching the end of life, too.
Aly Dickinson, Director and Operations Executive at End of Life Doula UK, explains what is involved and why people may choose to work with an End of Life Doula.
What is an End of Life Doula?
We are sometimes called Death Doulas, but rather than just being a name, we would love people to understand what we can do.
Essentially, we are supporters and companions alongside people living with a life-limiting illness, their families and those who are important to them. We are not medical, but as we work one-on-one, we are a consistent flexible presence, able to fill the gaps and take on various roles in support – practically, emotionally and, if desired, spiritually.
This film about our work follows three people and their Doula:
We like the term ‘a friend in death’; for us, this means we put the person who is dying and those important to them at the very centre. We work in an open-hearted way to create an atmosphere of loving support, kindness, respect, dignity and normality for all concerned.
We like the term ‘a friend in death’; for us, this means we put the person who is dying and those important to them at the very centre. We work in an open-hearted way to create an atmosphere of loving support, kindness, respect, dignity and normality for all concerned.
Aly
We aim to help people feel safer and more at peace with death and dying, offering guidance, confidence and support in any way it is needed. Having a Doula alongside makes it possible to stay at home, but we also work in nursing homes, hospices and hospitals – it’s all about what the person chooses.
We can:
Guide people through all the decisions and choices that need to be made at the end of life
Be a point of contact for other services and kinds of support
Be an advocate when wishes need to be upheld
Organise offers of help such as giving carers a break
Take time to sit with the dying person
Have conversations so that death is approached without fear or loneliness
Be practical and walk the dog, do some housework, prepare a meal or make a cup of tea
We may begin our relationship with a person from the time of diagnosis, or in the later stages of illness. We provide support for however long it is needed, sometimes for weeks and months and in some cases over a number of years. We often continue support for those important to the individual after the death.
Some Doulas choose to volunteer, while others work and charge professionally.
Another important aspect of our role is to be available to people at any stage in their lives to share our knowledge and provide guidance on death and dying. Our aim is to bring dying ‘home’ in our communities, as we believe it is everyone’s business and not the sole preserve of experts and professionals. We work in communities in so many other ways – providing information and guidance to demystify Living Wills, Advance Decisions (known as Advance Directives in Scotland), funeral arrangements, bereavement and grief support, navigating through the labyrinth of health, social care and government agencies.
Our aim is to bring dying ‘home’ in our communities, as we believe it is everyone’s business and not the sole preserve of experts and professionals.
Aly
It is important to us that our Doulas, who are supporting people in their communities, are exemplars. Any Doula referred by End of Life Doula UK will be self-employed, working to our Code of Practice with DBS/Disclosure Scotland checks and insurance. They will be allocated an approved mentor to supervise their work; this is important in providing guidance and as an additional layer of support.
Working with hospices
We are very grateful to have been asked by Pilgrims Hospices to write this blog and would like to tell a couple of anonymised stories about how we have collaborated with hospices.
Julie’s story
Julie was a 43-year-old woman with a brain tumour and was in a hospice for the last weeks of her life. Her husband approached us to say that she was frightened of dying and scared of being alone and in the dark. A Doula, Anna, sat with Julie each night for two weeks to be with her from sunset until sunrise. She relayed to Julie stories that her husband had recounted of their holidays together – swimming, sunbathing, getting merry on the local tipple – and played sounds of the sea and gentle chinking of glasses and chatter in a restaurant. Anna provided Julie with small sips of pineapple and coconut juice reminiscent of pina colada and massaged Julie’s hands and feet with lotions of her favourite scent of lemongrass. Anna talked and read to Julie throughout the night and sometimes sat in silence holding Julie’s hand as she slept; she reassured her that she did not need to be fearful and brought calm and peace to her surroundings.
Tim’s story
Tim was a 50-year-old man with a history of drug abuse and homelessness. He had not seen his adult children for many years. He was being visited at the hospice by his acquaintances who were sometimes noisy, insisting that the nurses should give Tim as much morphine as possible even though he did not want it and was in no pain or discomfort. Tim asked the Doula, Dan, to be his gatekeeper and to tell his acquaintances, on his behalf, when they could visit and when they should depart. Dan gently and sensitively kept a check on how they were with the nurses and acted as an intermediary to minimise any disruption and their demands. Dan, too, contacted Tim’s three sons and prepared them for the fact that their dad was dying. He was there to support them to enable them to visit and say what they needed to say, and for their father to make his goodbyes. Tim slipped into permanent unconsciousness and died at peace one early morning with two of his sons at his side. Dan guided the sons through making the arrangements for the funeral, and was there on the day and behind the scenes to see that everything went smoothly, which it did.
A hospice doctor shares their experience of working with an End of Life Doula
“I recently had the pleasure of working with X, an End of Life Doula who was working for one of our patients with lung cancer. Y was an insightful patient and recognised that having a doula would help her situation. Some of her family relationships were difficult, and she knew she may need the support of a doula to ensure her wishes were respected.
Y had complete faith in X and mentioned her the first time I visited her at home. It was reassuring, as her doctor, to know that she had a trustworthy person in place to help her at the end of life and that she had met her and involved her in all her plans. It made my discussions of advance care planning much easier, as the idea had already been introduced and Y was comfortable talking about her wishes.
Unfortunately, Y needed admitting to the hospice for escalating pain; X needed to be called urgently as Y became rapidly more unwell and it was clear that she was entering the dying phase of her illness. X came back early from holiday to be with Y and her presence was immediately a calming influence
X was so kind and caring with Y, staying with her 24/7 for several days when she was dying and helping to reassure her. When Y was not conscious, X continued to stay with her, talking to her and being a calming presence in the room.
After Y died, X knew what her wishes were regarding donation, funeral directors etc. and assisted in facilitating this as well.”
Thank you to the people we have had the privilege to support, and to you for reading this blog.
Aly Dickinson is one of the founders and a Director of End of Life Doula UK. She is a practising End of Life Doula based in Devon, in a home she shares with three cats and 45 patio pots! Aly trained to become a Doula after years of working in HR. She has volunteered in local hospices and now works out and about in her community. Aly facilitates community events such as end of life planning, funeral planning, death cafes, information sessions on death and dying and bereavement cafes.
There’s much more to death than we think; what if it isn’t just an ending, but an event we can plan for? Thinking beyond the four walls of hospices and hospitals, we have the chance to approach it with confidence and plan a good death. After Wards is a collection of insights and ideas from people who can help us all to re-imagine this essential part of life, and to live well until we die.
