Our annual Lights of
at 2pm,
Service will be happening this
at Hickstead Showground.
festive season is a chance to spend time with our families and friends, but those that we have lost are never far from our hearts.
of
is a beautiful way to honour
ones who are no longer with us and light a
in their
The nurses at St Peter & St James Hospice provide expert and compassionate care both at the hospice and in people’s own homes. They focus on what matters most, offering advice, reassurance and taking the time to simply listen and chat.
simply could not offer our essential care and advice for everyone who needs us in the local
without your generous support.
regular
means we have a steady stream of income to enable
to develop our expert services and plan
sponsor a nurse
summer our Open Gardens have been a huge success and we are so grateful to everyone who supports the event. I would like to take this opportunity to thank everyone involved who works tirelessly behind the scenes to make events like this happen.
I joined the Hospice in December 2021 and I am proud to lead an organisation that puts patients at the centre of everything we do. Like everyone else at St Peter and St James, I am here for one reason; to ensure that those in our Community who need us receive the best possible care and support. And, thanks to you, we have helped 755 people across Burgess Hill, Haywards Heath, Lewes, Uckfield and surrounding villages so far this year. You really have made a difference.
I have worked in health care for thirty years, initially training as a paramedic, then as a counsellor and joined the hospice world in 2008. I have a PhD in Palliative Care and believe it should be available in the right place, at the right time, to everyone who needs it.
Recently, I had the great pleasure of visiting some of our shops and meeting some of our truly amazing staff and volunteers. You can find out more about our shops and our efforts for becoming more sustainable on page 15. This
Our new Strategy , developed in conjunction the Board of Trustees, was launched in April this year This ambitious strategy will help us grow as a strong, sustainable and effective organisation and reach more people than ever before.
We introduced our new organisational values, which are at the heart of everything we do:
Compassion
We show everyone empathy, kindness and respect.
Integrity We do the right thing, no matter how challenging.
Accountability We take responsibility for our actions and outcomes.
Excellence
Inclusivity
We strive to be outstanding and aim to exceed expectations.
We welcome and respect everyone.
Thank you to each and every one of you for all your continued support and I hope to meet some of you very soon.
Dr Martin Powell Chief Executive
Welcome to the Autumn/ Winter edition of Life Matters, our new look St Peter & St James Hospice Newsletter.
At the recent National Cat of the Year awards run by Cats Protection we were delighted that our Hospice cats Jasper and Willow not only beat hundreds of other entries to win their category of Outstanding Rescue Cat but also won the top prize of National Cat(s) of the Year! These prestigious awards were judged by a celebrity panel.
“We are over the moon. Since they’ve been with us, they’ve brought comfort to so many people. Jasper and Willow really go to show how special rescue cats are, and we’re so proud of them both.”
“We often get comments from patients and those close to them, telling us how much comfort and joy the cats bring during their stay at the hospice.”
Like the cats, our beloved donkeys Dylan and Dudley still needed to be cared for throughout lockdown. We are really grateful to our committed team of volunteers, like Andrea and Rose, who continued to care for them come rain, shine or virus! The team were dedicated to their task throughout lockdown.There is a lot of physical work with caring for donkeys as they need mucking out, feeding and grooming, but the team explained that the donkeys provided a complete break away from everything else going on in life. Something that was especially important at that time.
We are truly grateful that our donkeys received the care they rightly deserve. They are important to the wellbeing of so many people.
The history of the donkeys and how they are an intrinsic part of the environment can be found on our website.
We were honoured to be invited to visit 97 year old Jean Chandler who lives independently in Hurstpierpoint and has been knitting nativity scenes to raise funds for the hospice for over 30 years!
Jean’s first connection with the hospice came about in the 1990s when after her close friend died, Jean began volunteering in her memory.
For 7 years Jean volunteered and during that time was asked to knit a new Nativity scene for the Hospice. Although
Jean stopped volunteering she has maintained a close connection with the hospice, her husband was supported by our hospice community team.
Jean is still knitting and has made many nativity sets over the years which have been sold, raffled or donated to raise funds for the hospice.
We were delighted she has agreed to complete a set for 2022 which will be sold in one of our shops. Look out for more news in December!
At the Hospice, we believe that access to the outdoors is incredibly important for mental and physical wellbeing. Our Woodland Walk is open for all to enjoy and we wonder if you have noticed that it recently benefited from some new signage?
Local artist Lyndsey Smith, has for a long time displayed and sold her art in support of the hospice, so we asked her if she would like to collaborate in creating some new signage for the Woodland Walk. Her expertise in creating beautiful nature
illustrations was a perfect fit to showcase our outside space.
Hopefully you may have already seen her captivating work. We are so grateful to Lyndsay as she worked on this project all for free, as a donation to the hospice.
We met with our talented new IPU ward manager Alice, to find out more about her role and what motivates her. Alice started at the hospice in January 2022. Before joining us she lived in Singapore, having previously worked for Marie Curie in Hampstead for over 10 years.
Knowing how busy Alice is we quickly fired 10 questions at her and this is what we discovered:
Q What made you apply for the job?
A I was actually offered the job 3 years ago after a spell at the hospice working as a bank nurse but family commitments took me to Singapore. When I came back the job was advertised again and it seemed like it was meant to be.
Q What made you choose to work in Palliative care?
A
Early on in my career I worked as an agency nurse at Marie Curie and realised this was where I fitted in. I went on to spend over 10 years developing my career there. With end of life care you only have 1 chance to get it right; at the hospice you are able to dedicate the time needed to do this and that’s important to me.
Q What is the nicest part of working at the hospice?
A It is wonderful to have the time to deliver quality care to a patient at the end of their life. You feel like you can do that as it is such a beautiful setting here and is so calm and peaceful.
Q What surprises people about the hospice?
A
People dont realise how important our volunteers are to us. The ward volunteers are brilliant ; dealing with questions and comfort issues that visitors think the nurses might be too busy to attend to. The volunteers are fundamental in supporting our nurses to create a relaxed and supportive environment.
Q What would you change instantly at work if you could?
A
It is natural to want to always improve so if we had more people doing what we do, especially registered nurses it would be great.
Q What do you like to do on your days off?
A
With 2 young children (Alice has a son & daughter aged 5 and 2) my weekends are spent with them getting out in the fresh air and walking. Exercise is so important to mental health; I love going to classes at the gym and doing a bit of running too - I did the Couch to 5k when I was in Singapore so I want to keep my fitness up.
Q What three words would you use to describe yourself?
A
Straightforward, Energetic and Loyal
Q What is your motto or personal mantra?
A Working in the hospice environment I am a great believer that you should live life to the full. It seems you always regret what you didn’t do rather than what you did, so living with no regrets is important!
Q What is your guilty pleasure?
A A nice full bodied red wine and a cheeseboard (said with passion so I think we know what Alice likes to do on a Friday night!)
Q What is a fun fact people might not know about you?
A I once featured in OK magazine. Working at Marie Curie in Hampstead we frequently had both patients and visitors who were rich and famous. I even met George Micheal who was so lovely and gave tickets to his concerts to the nurses. We cared for the parents of the editor of OK magazine and as a thank you he featured a story about us.
Alice ThomasLiving with a life-limiting illness can be challenging and prevent you from doing the things that matter most to you. Our goal is to help our patients and those close to them, to live well. The Living Well Centre at St Peter and St James Hospice supports patients to:
Focus on what Living Well means to them, Identify their most significant concerns and priorities, Find ways to keep doing the things that matter most to them.
Our team can offer a range of activities, practical support and talking therapies designed to help patients and those close to them.
“It is our goal to help people to continue to Live Well from day one of a life limiting diagnosis. We currently offer Art Therapy, Writing for Wellbeing classes together with a social morning, Hospice Biographers and much more. We have a lovely, welcoming sunny space where people are able to come sit and relax with a cuppa and purchase a slice of cake or lunch if they prefer from our cafe.”Louise Stevenson & Rachel Lohrey Rachel Lohrey, our Living Well Centre Lead tells us;
and that was what was most inspirational about her, being disabled never stopped my parents doing what they set out to do
She was able to carry on nursing when I was a child, working at Cuckfield Hospital before it moved to the Princess Royal in Haywards Heath and being a nurse was a large part of her identity. I think if you have that vocation you carry on always being interested in people, fascinated in people’s health and wellbeing which is what motivated her a lot of the time.
As a family, we lived abroad and travelled and over the years Mum was involved in all sorts of projects in the Community. She was involved in a disability advice line, supporting other local disabled people, she did things to improve Lindfield village, like planting trees, lowering the kerbs (before anyone else was lowering the kerbs for better accessibilty) and she ran the community transport bus. Her life was very full.
My Mum, Sue, was a nurse when she was younger and quite an inspirational person to most people who met her. She had an interest in everyone, a naughty glint in her eye and was cheeky and funny.
One of the defining aspects of her life though was that she was diagnosed with Muscular Dystrophy, a progressive neurological illness at the age of 21.
you live and talk about health and wellbeing probably more than if you’re in a family that’s not been touched by something like that, so as a family we knew what Mum’s views were on what she wanted for the end of her life. Partly because Mum was a nurse and essentially as a family we’re pretty pragmatic about these things and quite open.
In her later years Mum was immobile, we had a team of carers, all of whom had been with Mum for over 20 years, so they knew how to care for her. She was really adamant she was not going to go to hospital. Unfortunately we did end up in hospital a couple of times but we all knew she had a living will for years and an advanced care plan in place.
Our whole family are very pro Hospice and Mum supported St Peter & St James Hospice in particular as a number of her friends had spent time and had also died there. When Mum ended up in hospital, we saw a fast sudden change in her disability. Initially she refused
any further intervention and wanted to go home but as the ambulance arrived my mum changed her mind. She suddenly got panicked about going home, I was so impressed with how moving her to the Hospice was facilitated for us. No one pressured us for that decision, it was completely led by my Mum and everyone respected it.
The Hospice was a completely different environment; the hospital was full of noise and people coming and going. All of a sudden we had our own room at the Hospice, a beautiful view of the Downs, the donkeys, the pheasants, and all the birds and everything was set up there and nothing seemed to be too much of a problem.
Compared to the hospital it was so remarkably different, it was calm, it was contained, it felt like everyone knew exactly what they were doing, no one was frightened of anything. Everyone understood that we as a family knew a lot about how to care for Mum and how to move her and make her comfortable. It felt like
we were enveloped with comfort and calmness. Mum immediately relaxed and as a result she lived another 10 days rather than a day or 2 that the hospital had been suggesting.
On one sunny day Mum asked to go outside, the team rolled her bed onto the patio outside her room through the french doors and she was able to lay there and bask in the sun. It was so lovely, you wouldn’t get that anywhere else.
The team were there and they held you, gave you the time that you needed, they answered all your questions. Sometimes you’re a bit frightened to ask, but they were open to being asked and answered them really kindly and honestly. No one can really predict what is going to happen, everyone is different. Those answers can seem a bit vague but it is done with so
much assurance it doesn’t feel vague, it was supportive.
That peace and tranquillity and expertise all coming together, the personalised and professional help all at once relaxed my Mum and actually the end of her life was really peaceful and loving and as a result we had more time together.
I’m a huge fan of all the hospice does. I’ve worked in cancer care all my life and in the charity sector, I’ve seen and worked in hospitals and alongside the NHS. I can only describe the experience my Mum and us as a family had at the hospice
as true patient centred care. It was all about what my Mum wanted and needed, if she wanted mango sorbet, be taken outside, be calm or have music on nothing was too much trouble and staff focused on whatever it took to make her feel good. The nurses and support was there, all of which was excellent, some phenomenal, in particular Nicola and Lucy who were there on the last night with me and Mum, they were amazing.
It would be fantastic if everyone could have access to that level of care and support. More people need to think about what they want to happen at the end of their life. It is so important to be able to access these services. Everyone should be able to have a good death, hopefully with the support of their local hospice.
Thank you to Diana Jupp for sharing her Mum’s story with us.
“There isn’t a predictable way for someone’s end of life to happen. It felt really reassuring, I felt safe.”
Hospice care is about helping people to live well for as long as possible yet many have misconceptions about what it means to be under the care of a hospice. Unfortunately this could mean that people don’t realise how we can help both them and those close to them; consequently they don’t come to us for support soon enough. We want to share some common things people tell us they believed about hospice care before they came to us. Here are eight of the most common myths:
MYTH: A hospice is where people go to die
REALITY: Sometimes. We provide high quality care to people at the end of their lives and we know how much patients and their families appreciate expert support and care at such a poignant time. However, patients also come to us for symptom management, short-term care following a hospital discharge and for respite support. Hospice visits may include outpatient appointments for counselling, bereavement support and complementary therapy, for example. Our Living Well Centre at the Hospice (see Page 7) focuses on improving the quality of life and also provides a social outlet for our patients and those close to them.
MYTH: I expect it to be so depressing...
REALITY: There’s a widespread assumption that hospices are sad, morbid places yet the atmosphere at our hospice is full of calm, peace and happiness. People frequently comment that it is a place of positivity, happiness and hope.
MYTH: Hospice patients are lonely
REALITY: People think a hospice is a lonely place where patients are isolated from those close to them.This couldn’t be further from the truth; we encourage and support patients and their families to maintain and enhance their relationships and provide specialist support if required.
MYTH: Hospices are where you go when you have cancer
REALITY: While many patients we see are living with cancer, we are here for everyone in our Community who is diagnosed with a life-limiting illness (e.g. organ failure, neurological conditions and dementia).
MYTH: You can’t stay at home and receive hospice care
REALITY: Hospice care is patient-centred care; everyone has a right to choose where they would like to live and die. At St Peter & St James our team of Community Nurses can advise and support a patient to stay at home if they wish.
MYTH: The hospice is funded by the NHS
REALITY: Just 13% of the funding we need is provided by the NHS. It costs £6 Million per year to run our hospice so we rely on the support of our Community to help us raise these funds. This means our hospice care is free of charge to you and your family.
MYTH: Only the person who is ill can be supported
REALITY: If someone has a life limiting illness, it can have a big impact on those close to them. We support carers, family or friends in a variety of ways. We have counselling, welfare advice, social worker support, spiritual support, befriending and walking groups available to those who wish to use it.
MYTH: Hospices only care for people who are in the last few days of life
REALITY: Everyone can use our service from diagnosis of a life-limiting illness. Our philosophy is to help people live well for as long as possible.
touches of care that make such a difference”
We recently welcomed a team of new volunteers to provide ward support for our Inpatient Unit (IPU). This important volunteer role is a great way to gain insight into the workings of a Hospice. It is perfect for someone looking to develop their caring skills, or perhaps someone wanting to gain experience in a clinical environment while studying. Some volunteers will have had their own experience of caring within their personal life and now want to be part of a team. The role is very varied depending on each patient’s requirements. The team of IPU Ward Support Volunteers help patients and their visitors with a range of tasks that can include answering call bells, filling up water jugs and making refreshments, reading with patients, or simply having a chat. Volunteers also support the team by assisting in making beds, folding clean laundry, taking food trays to the kitchen, ensuring flowers are fresh in rooms and the many non-medical special touches of care that can make such a significant difference to patients and those close to them during this time. Volunteers generally provide one 4 hour shift of support per week - but can do more if they are able to.
If you think this is something you might like to do then we will help you be fully prepared. All Inpatient Unit Ward Support Volunteers are trained to the highest standard including in subjects such as:
In addition, each volunteer is given a healthcare assistant buddy who checks in with them at the start and end of every shift.
The first group of new STPJ Ward Support Volunteers who completed their training started their roles in July – to ensure continual development and improvement ongoing coaching and training is also provided.
days or decades, minutes or months, every moment of volunteering matters”
Please see the STPJ website and contact us if this is something you would like to do: stpjhospice.org or at volunteering@stpjhospice.org
Whether days or decades, minutes or months, every moment of volunteering matters. To put it simply, we would not be able to provide hospice care without the incredible support of our volunteers. Volunteers are at the heart of St Peter & St James Hospice.
Not many people are aware that all our Trustees carry out their roles in a voluntary capacity. The hospice is very lucky to gain the broad range of community, medical, professional, or commercial skills and experience of the Trustees who have chosen to support us. Trustees are very important in helping monitor and develop everything the STPJ management team and their colleagues strive to achieve – services, care, community, communication, finances, investments, budgets, strategy and fundraising. There are legal obligations to uphold in the role, nothing goes unchecked.
Our Chair, Harriet is a lawyer by profession with a law degree from Cambridge University. She held key management roles at a large firm for many years and has since worked as an independent consultant and legal expert.
Harriet has lived in Sussex for more than 20 years and has always been passionate about supporting her local community. She loves singing and is part of the highly acclaimed Bach Choir.
We are currently looking for two new Trustees, ideally with a Marketing & Communications background. If you have relevant experience and feel you could contribute to shaping the future of the Hospice we ‘d love to hear from you.
Please register your interest with Catherine Bridger (Governance Manager) at cbridger@stpjhospice.org
stpjhospice.org
The team at St Peter and St James Hospice are really excited to be working with you towards the elimination of waste within our shops and retails spaces
practice:
The team are always ready to help you grab a pre-loved item in shops. There is also a great online presence across many platforms from Vinted to eBay with deliveries to your doorstep. If clothes are worn for just 9 months longer, it reduces their carbon, water usage, waste, and landfill footprint between 20 to 30%.
We make unique pieces like embellished sweatshirts and t-shirts, using a mix of donations that come into our distribution centre. These original designs and special one-off items are then sold in the shops and our online platforms.
• One t-shirt takes 2,700 litres of water
water for a person to drink for 2½ years.
• Around 300,000 tonnes
million
The best place to donate your clothes is at our clothing banks located:
Wivelsfield Village Hall
St Peter & St James Hospice
Hurstpierpoint College
• Christs Hospital
• Cumnor House School
Plans are underway to open the Restore Shed in the autumn. Donated items that need a little love can be repaired before we pass them to our shops. We are on the lookout for a team to paint as well as mend clothing, furniture, and electricals. If you would like to volunteer to help, please contact us.
• 22 million pieces of furniture are thrown away each year, 51% of this could be mended.
• We burn 59 million small electrical items per year in the UK.
• Cyprus Road car park, Burgess Hill
• Ditchling recreation ground car park
• Outside our Lindfield Shop
Our Distribution Centre is also open for donations at Albourne Road, Hurstpierpoint, Hassocks, BN6 9ES. We are open from 10am-2pm Monday to Friday.
We are very proud of the progress we have made and are committed to continuing to change the way we work with the vital global resources that you gift to us.
