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BLOG: Acceptance and understanding bring light to couple in their darkest time

Hospice Care Week 2021

Acceptance and understanding bring light to couple in their darkest time

“It was a safe place during a dark time. Somewhere we could be ourselves and spend precious time together.”

When someone is nearing the end of their life, it matters more than ever that they should be with those dearest to them, but – as revealed by research carried out by the Care Quality Commission* – for some LGBTQ+ people with terminal illness the reality is that they encounter discrimination and lack of understanding at a time when they most need acceptance and support. This Hospice Care Week (4 – 8 October), a Plymouth man is sharing his story to demonstrate what high-calibre hospice care looks like when you are part of a gay couple, and the important difference it makes.

When retail manager Pete Richards met accountant Richard Shaw in 2012, their instant connection saw the two quickly become inseparable, moving in together, enjoying holidays in far-flung destinations and relishing time spent with friends and family, including their two young nephews, aged 6 and 4.

The couple’s active lifestyle included regular walks along the coast and in the countryside, plus daily visits to the gym for health-conscious Richard, who Pete describes as ‘the perfect gentleman – always impeccably turned out’.

Then, at Easter 2019, came devastating news that changed everything, when tests revealed that Richard aged 36 had a brain tumour. A gruelling regime of medical treatment followed, including chemotherapy, but could not halt the growth of the tumour and eventually, Richard made the difficult decision not to undergo further treatment.

Pete said: “Our focus was on making things easier, ensuring he was comfortable and being able to enjoy the time we had left together – that’s why getting him into St Luke’s specialist unit at Turnchapel made sense. Not only are the doctors and nurses experts in end of life care, it’s local so it was really easy for me and our family and friends to visit. Rich was such a sociable person and he loved having us all around him.

“It was such a relief to find that the hospice was not at all like the dark place I’d been expecting. There was a feeling of great warmth, and Rich had a lovely big room with spectacular views of the Hoe.

“What really meant so much to us both was that we didn’t have to hide our sexuality. Even though this is the 21st century, I was anxious I might have to pretend to be Richard’s friend instead of his partner, but we were immediately accepted as a couple and received nothing but kindness and support from everyone at St Luke’s. I could lie next to Richard and cuddle him without worrying what anyone was thinking.”

Importantly, too, Turnchapel was a place Richard and Pete felt comfortable for their nephews Charlie and Matthew to visit – not only because of the playroom full of toys and the space for them to run around but because through our Patches scheme, providing bespoke, age-appropriate support for young children facing the loss of someone close. Our Family and Children’s Support Worker Lisa was there to involve the boys in fun activities as well as gently preparing them for the changes they would see in their uncle.

Pete said: “Rich adored watching the boys play and just seeing them be happy, and Lisa was amazing all the way through. She helped Charlie and Matthew process what was happening, and even after Rich died she visited them at home.

“The other staff were really kind, too, wheeling Rich’s bed into the garden on sunny days and making us cups of tea. One nurse in particular, Anca, stood out to me. She would give Rich these hand massages that would put him to sleep. Little touches like that made such a difference.

“Rich was at St Luke’s about four weeks and I’m forever grateful that when he died it was with the people he loved most in the world around him. We were all there, holding his hands.

“Losing my partner, who was such a lovely, lovely guy, has been heart-breaking, but everything St Luke’s did for us made that final chapter a little bit easier. From day one, Rich and I were welcomed, loved and respected by the team just as much as anyone else and that compassion never wavered. They were even there in the church for Rich’s funeral, supporting us.

“Everybody, regardless of background or circumstances, deserves to die with dignity surrounded by those they love and that’s why I feel I owe St Luke’s a debt for helping Rich, me and our family, bringing light to us in our darkest time.”

Want to ensure more families can access our care?

Show your support for nurses like Anca and Lisa by sponsoring a St Luke’s nurse or join Pete in taking on challenges in aid of St Luke’s. Thank you!

*A Different Ending: Addressing Inequalities in End of Life Care 2016

Other useful documents, Hospice UK Equality in hospice and end of life care: challenges and change

What is hospice care

BLOG: What is hospice care?

What is hospice care

What is hospice care?

If you have been advised that you need hospice care, it can be an anxious and confusing time. It’s only natural that you’re likely to have lots of questions. That’s why we’ve written this blog to help provide you with some answers.

What is hospice care?

Hospices provide specialist care for people who need their help to continue to live well following diagnosis of a terminal illness, and – when the time comes – to ensure they can die with dignity in the place that’s right for them.

Hospices give not only medical care, including pain management and advice about your condition, but emotional and practical support, too.

Hospice care has no time limit. Some patients may be supported at home by a hospice for many years while still living their day-to-day lives. The service also extends from care at home to those in hospital settings and care homes, as well as to people whose complex symptoms and/or circumstances mean they require extra support in a specialised hospice building.

Central to hospice care is respect and compassion for patients, maintaining their dignity and helping them to fulfil their wishes at end of life, which could include where they wish to die and what they want their funeral to be like.

At St Luke’s, we provide high-calibre medical, emotional, social and practical care and support. This is often referred to as ‘holistic care’ because it is comprehensive, treating the person rather than just focussing their condition. Our package of care includes physiotherapy, occupational therapy, practical advice, bereavement support and much more.

Who is hospice care for?

Hospice care is for anyone with a terminal illness, so not only people with cancer but also those with conditions such as motor neurone disease, multiple sclerosis, heart failure and Parkinson’s disease, and other life-limiting illnesses.

Hospice staff are experts in handling complex symptoms. They not only look after the elderly but any adult or child who needs them, providing specialist care and support at any stage following a terminal diagnosis, not just close to the very end of life. Here at St Luke’s, we look after adults and also provide specialist support for children of patients.

Hospice care extends to the family of a patient so that they receive the emotional and practical support they need before their loved one dies and then bereavement support following their passing.

Where is hospice care provided?

Hospices aim to keep patients at the centre of decisions surrounding their own end of life care. With this in mind, patients are looked after in the place of their choice.

There are some exceptions where this cannot be facilitated though, due to factors such as complex symptom management or becoming to poorly to travel to a preferred location.

The three main sites for St Luke’s hospice care are at home, at University Hospitals Plymouth NHS Trust (Derriford) and at our specialist unit at Turnchapel.

St Luke’s at home

Most of the care given by St Luke’s is in patients’ own homes because we understand how much it means to people to remain in their familiar surroundings close to loved ones, including pets.

Our community team communicates with patients to arrange regular visits and catch-ups to review how the patient is feeling and determine any additional support required. They are also at the end of the phone for any queries or concerns. Our Urgent Care Service steps in outside of these times to ensure patients remain free of any discomfort or pain and to avoid any avoidable re-admissions to hospital.

St Luke’s at Derriford

Some hospices, including ours, have hospice teams based at their local hospital for patients who have been admitted and are approaching end of life.

Working alongside the hospital doctors and nurses, they offer specialist advice on complex symptoms and provide emotional support for patients, their family and carers. The team is also heavily involved in delivering education in end of life care to nursing and medical staff across the hospital.

The team ensures a patient’s care is well co-ordinated and that they have access to all the information and advice they need, during or after treatment.

Our specialist unit

There are many reasons that a patient could be admitted to our inpatient unit at Turnchapel. It could be the person’s preferred place of death or it could be because of the need for intensive support for complex symptom management. Not all patients are easily cared for in their home so a hospice building may be the most suitable place of care.

Some patients are brought into our specialist unit for a short period. It can be the best place to monitor how they are, amend their medications and manage pain before we discharge them to go home with the appropriate support. It is also a place where patients’ friends and family can spend time with them, making the most of the time they have left together.

Getting in touch

Whenever you need St Luke’s, we are here for you, ready to listen and get to know you so that we can give you and your loved ones the best possible care and support.

Contact us here.

Sail for St Luke’s

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Isolation video delivers emotional tribute to key workers on the frontline

Talented local Plymouth band SuperXLs have been supporting St Luke’s for the past 3 years, by showcasing their musical tribute to the late, great, David Bowie every January. To date the band has raised almost £2000 from those shows alone. The band is made up of five great local fundraising heroes called Ben, Mark, Leo, Jon and Phin.

On the 3 May, the SuperXLs premiered their isolation video to thank frontline workers fighting covid-19. The song titled ‘Heroes for Heroes’ has raised just under £2000 for St Luke’s, ensuring local families get the care and support that they need at end of life.

Mark Trewin from SuperXLs said, “We had to do something as a tribute to all the frontline heroes working so hard in our community during these challenging times” Mark continued “St Luke’s was the obvious choice to raise money for. One of the band members has a family member being currently cared for by the hospice, so it has a personal connection too and is even more meaningful to gift our time and raise much needed funds.”

The band are urging people to watch their video on YouTube and make a donation of support.

Penny Hannah, Head of Fundraising at St Luke’s, said “The video is best enjoyed with a drink in hand and the sound up loud, the emotional introduction had me and my family in tears, so much passion shared by the band. The words of the song are very powerful and thought provoking, and the images shared of our incredible nurses. I know the challenges our nurses and doctors are faced in these unprecedented times to care for over 300 families in and around our City, it really is heart touching.

“I would like to thank the band for their support and everyone who has donated to the JustGiving page and throughout the pandemic. We really need your support and we are so very grateful, thank you for caring.”

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Skydive for Grandad

Leaping 15,000 feet from a plane is an exhilarating way to raise funds for our patient care, but what motivates someone to embrace a challenge many would find too daunting?

For nursery worker Rosie Pryce, 23, it is the memory of her much-loved grandad David, who was looked after at Turnchapel before sadly, he died last November, aged 86. Thanks to the outstanding quality of the care David received after he was transferred from hospital to our specialist unit, Rosie is taking on a skydive as her way of thanking our charity for making his last days of life so peaceful and comfortable.

She said: “Grandad was very frail and his condition was deteriorating so he chose not to have anyone visit him at the unit except my grandma Sylvia and their three children, including my dad Kevin. While it was very hard knowing he was so poorly, it was such a comfort hearing from them that he was being looked after by nurses they described as ‘angels’ whose care they said was ‘perfect’.

“I was so reassured to know grandad was in the best possible place for him, with the privacy of a room where grandma could stay by his side day and night. They were childhood sweethearts and married 64 years so spending this precious time together in such an uplifting environment really made a difference to them both at a difficult time.

“The St Luke’s team made sure grandad was pain free, and the nurses were so kind. They turned his bed so he could enjoy the wonderful views out across the water because they heard how he was mad about all things coastal and once owned a boat.

“I have happy memories of days spent with him by the sea, and his love of outdoor swimming was legendary, so it means a lot to know that he could take in a view that was so meaningful to him.”

“When I heard about the opportunity to do a skydive to raise money to give something back to St Luke’s, it really appealed to me. I’m quite a thrill-seeker anyway and felt like I wanted to do something remarkable for grandad because he was such a kind and special person who always had time for me.

“He was a practical joker and that fun-loving side has rubbed off on all our family. Although it’s a big leap, I think the skydive will be great fun so it’s a fitting way to remember grandad and do good for other local families who need the help of St Luke’s.”

Thank you, Rosie – we really appreciate you taking the plunge for our charity!

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New year, new challenges for 2020!

With this week, being not just the start of the new year but a whole new decade, many will be looking to set goals for themselves or even take on an exciting challenge for 2020 – or beyond!

What better way to push yourself out of your comfort zone than by getting involved in a challenging and exciting event that also benefits your community? We are urging you to put your best foot forward, take a leap or even scale the world’s longest manmade structure to raise funds that ensures care in our community

Today, we have launched not just one but two of our most popular flagship events, Men’s Day Out and Midnight Walk, giving people the chance to celebrate the lives of their lost loved ones while raising much-needed income that helps families make memories together when time is running short.

Men’s Day Out, is loved for the rugby, banter and camaraderie and the unity of walking together raises thousands for St Luke’s. Officially, the region’s biggest men-only sponsored event for charity is back this Saturday 28 March. The event, which is Powered by IU Energy, will see guys gather for a day to remember, striding the city streets before they return to Plymouth Albion RFC for a well-earned pasty and pint and the not-be-missed clash between the home team and their Richmond rivals.

Meanwhile, St Luke’s is inviting ladies to turn Plymouth pink on Saturday 11 July, when its popular Midnight Walk returns. This year, the much-anticipated event, which is sponsored by Nash & Co Solicitors, includes a new challenge – 20 miles for 2020 commencing at 20:20 hrs – in addition to the new 5 and 10-mile routes. That’s not all that’s new, because this year walkers will set off from Home Park (Plymouth Argyle FC) and all will be wearing Midnight Walk’s signature bright pink t-shirts. As always, it promises to be a great night out with the girls, with many walking in memory of loved ones.

Nina Wearne, Community and Events Fundraising Manager at St Luke’s, said: “Whether you take part in Men’s Day Out or Midnight Walk as a personal challenge or to celebrate the life of someone special, please know that St Luke’s could not do what they do without the support from you, our kind-hearted community. Perhaps this is your first time, or maybe it’s an event you enjoy year after year; these events are a fantastic way to have loads of fun whilst making a vital difference for local families.”

For those who’d prefer to take the plunge to show their support for St Luke’s, there are opportunities to take part in an exhilarating skydive on Saturday 21 March sponsored by BT Local Business. The 15,000ft leap is free for those who raise a minimum of £395 in sponsorship.

Looking further ahead – a once-in-a-lifetime challenge – The Great Wall of China Trek is taking place from 6 to 14 November 2021, offering participants an unforgettable adventure. Those who are interested are invited to attend an information evening on Tuesday 11 February 2020 to find out more but don’t hold back as registration is already open.

Nina Wearne said: “As well as being a mesmerising experience hiking along one of the most famous structures in the world, this is an opportunity to soak up China’s vast variations in landscape, culture, wildlife and heritage – not to mention cuisine! It’s a fantastic way to do something different and also make a difference.”

Details of these and all St Luke’s flagship fundraising events are available here.

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Men, don’t be afraid to talk about what’s below the belt

Martin York, who was diagnosed with advanced prostate cancer at the age of 55, has spoken out to urge men to be vigilant in checking for symptoms of the disease and not let embarrassment keep them from getting the simple check-ups that could save their lives. He wants to leave a legacy to the men of the city to help protect their health.

With prostate cancer affecting 1 in 8 men, Martin is passionate about spreading the message that, while the disease tends to occur in those aged over 65, younger men are also at risk and that getting diagnosed early can improve the prognosis for those who have the condition.

Martin said, “I was diagnosed with terminal prostate cancer in 2017, and the disease had been doing its worst inside my body for three to four years so I went straight onto chemotherapy. It was very debilitating and I spent most of the next five months in bed.”

A keen Plymouth Argyle FC supporter, Martin was keen to give something back to the club and at their invitation spoke to the players in the dressing room to share his story and help raise awareness of prostate cancer and its symptoms.

He said: “Men don’t like talking about anything below their belts, which is ridiculous. It’s too late for me, but it’s not too late for others. If you’re in any doubt at all, see your GP for a simple check-up.”

Martin, who has been married to Penny for 24 years, came into the care of St Luke’s expert team when he needed help to control his pain and was admitted to the our specialist unit at Turnchapel.

Just as passionate about debunking unhelpful myths around hospice care as he is about urging men to prioritise their health, he said: “I went in not knowing what it would be like, but I was very pleasantly surprised how friendly, light and airy the unit was. It was like a five-star hotel.”

St Luke’s specialist care and support for Martin did not stop when he made the decision to be discharged home. Thanks to the charity’s multidisciplinary At Home team, which looks after half of all the patients St Luke’s sees across Plymouth, South West Devon and East Cornwall, everything was in place to make his transition from the unit as smooth as possible.

Penny said: “A lot of people think that when you go into the hospice building, you’re never coming out again. This couldn’t have been further from the truth for Martin, and it was his choice to come home. The day he returned was remarkable, with all the kit already in place, thanks to St Luke’s occupational therapist Shaen. He made sure Martin had everything that was needed, from easy chairs and hoists to a special bed.

“Martin is a very special man, I will always be grateful to St Luke’s for this gift they’ve given us – Martin at home where he belongs so we can have this precious time together knowing that if we need it, help is just a phone call away. The kindness and sensitivity of the team is making such a difference to us at a really difficult time.

“I am incredibly proud of Martin and want to echo his words to other men: If you have even the slightest concern that something is wrong ‘downstairs’, go straight to see your GP. It could save your life.”

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Making our city more compassionate

The launch of the city-wide partnership showed how aspiration is being turned into action across Plymouth, benefitting people at end of life.

Back in May 2018, at the Plymouth: a Compassionate City conference hosted by St Luke’s and attended by organisations ranging from schools and places of worship to solicitors and voluntary groups, keynote speaker Professor Allan Kellehear threw down a challenge to those present, saying: “Every day, people die and hearts are broken. Death and dying are more than medical issues and caring for those affected is not just the role of the doctor and the chaplain. End of life care is everyone’s responsibility and we all have a practical role to play.”

This rallying call to build on the good work already happening across Plymouth to make our city a more compassionate place for people at end of life, and those caring for them, was met with overwhelming support. So, nearly 18 months on, at the launch of the End of Life Compassionate City Charter Professor Kellehear urged Plymouth to adopt, it was an opportunity to see how groups and organisations have been working together, turning aspiration into action so that no-one feels left behind.

Having a city-wide end of life network working in partnership with the City Council, as well as other public bodies and local charities, is already beginning to ensure that Plymouth is a city that does not shy away from the ‘taboo’ subjects of death, dying and bereavement but talks openly about them. In fact, Plymouth has the accolade of being recognised at England’s first Compassionate City, but this is just the beginning.

The Compassionate City initiative is being led and co-ordinated by Gail Wilson, Deputy Director of Clinical Services at St Luke’s. Gail said: “Across the city and the wider communities there are many examples of individuals and groups going the extra mile to support people during times of sickness, bereavement and loss, from providing a listening ear to helping with practical things such as walking the dog and collecting shopping.

“I have been amazed by what various organisations and individuals across the city have achieved in the past 18 months, with the support of the compassionate community team at St Luke’s . This is a really a great start but there is much more to do, so I would encourage anybody who wants to be involved to sign up to the network and join us, so together we can create compassionate networks where we live and work so that no-one at end of life or experiencing bereavement and loss feels isolated or alone.”

Steve Statham, Chief Executive of St Luke’s, said: “We have a key role to play in supporting our community and networks in times of crisis and loss. This charter is about how we can work together towards extending the support we give to people at a most difficult time in their life”.

Ruth Harrell, Director of Public Health for Plymouth, said: “By taking a public health approach to end of life care, we can give a voice to all those affected by death, dying, bereavement and loss and work together to create a city that does not shy away from their needs but provides a compassionate collective response.”

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BLOG: National Trustees’ Week – 4 – 8 November

Did you know that nationally, 64% of charity trustees are men and that the average age of a trustee is 61? (Source)

We’re pleased to say our board is more diverse, but we’re striving to ensure it is truly representative of the community St Luke’s serves. That’s why – with it being national Trustees’ Week (4 – 8 November) – we not only want to thank the dedicated men and women who kindly give their skills and time free of charge to govern and guide our charity, but also highlight the opportunity for you to join them.

With the recent launch of our five-year strategy setting out our ambitious goals for the next half-decade, it’s a particularly exciting time to get involved as part of our Board of Trustees.

Trustee, Charles Hackett, said: “Being a trustee at St Luke’s supports my personal development but more importantly allows me to use my skills to help, in some way, the community in which I live.”

Being a trustee with St Luke’s can be rewarding for many reasons, including a sense of making a difference with a well-respected charity that touches the lives of local families to gaining new experiences and forging new relationships. (For an insight into our recent work, take a look at our latest impact report.)

Fiona Field, who sits on the Organisational Risk and Audit Committee and chairs the Health & Safety Committee, said: “I give about one day per month on average, this is divided between being a member of the board, chairing the health and safety committee, visiting teams across St Luke’s and taking part in some of the fundraising activities. I have regularly attended the Open Gardens in the summertime, sold programmes on Plymouth Hoe at the Firework Championships and walked the Elmer Trail. I am also the named trustee for both the Launceston and Tavistock retail shops so visit them both periodically, usually buying something on every visit as well!

“I find the work interesting and rewarding and I am always proud to talk to others about the brilliant work that everyone at St Luke’s does for such a worthy cause. I am keen that the services St Luke’s offers continue to be of the highest quality possible for our patients and their families locally.”

We’re seeking people with the knowledge, skills and motivation to help ensure that as St Luke’s evolves, we continue to make wise decisions that mean we can meet the challenges ahead, including reaching underrepresented groups who sometimes struggle to be heard.

As well as contributing to board meetings, you’ll have the opportunity to use your skills with a sub-committee that makes best use of your specific area of expertise. There’ll also be opportunities to further your experience through hearing from guest speakers and attending national conferences.

If you have a background in community development, including education, or in HR, we’re particularly keen to hear from you.

For more information, please contact Sarah Gore at sgore@stlukes-hospice.org.uk.

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BLOG: On the night shift

First impressions matter and at our specialist unit at Turnchapel, there’s a team member who not only makes sure everyone who walks through our door receives a friendly welcome when they visit a loved one in the evening, or stay overnight, but can empathise with our hardworking clinical team, too.

When Andy Campbell first joined St Luke’s 32 years ago it was as a Healthcare Assistant, a role he later combined with his job as Support Officer with our charity until two years ago when he decided to focus on the latter, securing the building after the ‘day’ staff have gone home and doing much more besides.

Not only does Andy cover reception duties at Turnchapel during his regular 6.30 – 10.30pm shift, taking calls and greeting visitors, he ensures that both individuals and entire families spending time with their loved ones are comfortable, recognising that it’s often the ‘small’ things that can make a big difference to them at such a sad time.

Andy said: “I know our patients are looked after impeccably, so I see my role as keeping an eye out for those visiting them, who are often struggling even if they seem pretty calm on the surface.

“Whether they’re at Turnchapel for an hour or staying consecutive nights, there’s always something we can do to make them feel as relaxed as possible. Sometimes, just a friendly chat and a bit of banter is all it takes to show them they matter, while at others it’s about being practical and ordering their favourite takeaway so they can eat what they like while they’re here.”

So, from laying the tables ready for a family to enjoy a meal together to making up z-beds so they can stay close to their loved one through the night, Andy’s shifts revolve around the needs of our visitors so that they leave feeling better than when they arrived. Of all the families he has met in his many years with St Luke’s, it’s a particular mother and daughter who stand out in his memory.

Andy explains: “When a young woman who’d been receiving care was approaching the end of her life, she kept saying how much she desperately wanted to get a particular tattoo. Despite lots of phone calls, no local tattooists came forward to help so I contacted a friend of mine who’s properly qualified. He responded quickly and expertly created the exact tattoo she wanted, waiving his usual fee.

“Seeing how much it meant to this lady, who passed away just three days later, is something I’ve never forgotten. I know getting her wish helped her pass away peacefully and it gave her mum a lot of comfort, too.

“Being thoughtful and kind doesn’t cost us anything, but it can be priceless to the families we help. That’s why I always want to work for St Luke’s.”

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