Life Matters Spring/Summer 2023

Welcome to the Spring edition of Life Matters

Ialways enjoy hearing stories and feedback from patients and those close to them, especially when they tell me what a positive difference we make by providing care and support when they need it most. In this edition we share some of these first-hand experiences, and I hope that you find their stories as heart-warming as I do.

In this newsletter we focus on our nurses and the incredible work they do as we launch our Spring appeal to ʻSponsor a Nurse’. The much-needed funds generated through this appeal means we can pay for more nurses and care for even more patients in our local community.

Palliative care nurses are especially skilled and deliver a level of care that is second to none. With your help, we will grow our nursing team so we can help more people and on pages 12 and 13 you can read more about what it's like to work with our amazing team.

We have recently launched the 'Restore' projects at the Living Well Centre within the Hospice, and at our Distribution Centre in Hurstpierpoint. These projects are therapeutic activities for patients and those who enjoy furniture restoration, transforming donated furniture items which are then sold in our 11 charity shops throughout Sussex. On pages 14 and 15, you will read more about these innovative projects and how they are helping individuals, and the Hospice.

Our Fundraising team is excited about the return of some popular fundraising events and new activities for the coming year. Our Open Gardens event takes place at the Hospice on Saturday 20th May and marks the start of our Open Gardens series for 2023. This is always a highlight of the year, as we enjoy the beautiful gardens in bloom throughout the spring and summer months and my thanks goes as ever, to the generous homeowners who so kindly open their gardens for us each year. You can secure your tickets to our Open Gardens events via our website.

I hope you enjoy this edition of Life Matters and thank you again for your continued support. Every pound donated really does make a difference and in choosing to Sponsor a Nurse this Spring, you will be making a big difference to the lives of people living with life-limiting conditions in our community.

We really couldn’t ensure everyone who needs us receives the best possible care without your support. Thank you.

With kindest regards

4-5

6 Community Champion

7 Open Gardens 2023

8-9

HospiceNews

Introducing the Verity Waterlow Inpatient Unit

Visitors to the Hospice may have noticed that our Inpatient Unit has been renamed. We were very fortunate to receive an incredible donation from a local charitable trust; The Verity Waterlow Endowment Fund. Verity Waterlow was a nurse by profession and lived locally. After her death she left her legacy in trust to help fund end of life care in the Horsted Keynes area. In 2022 we were chosen by the trustees to receive a portion of the trust in support of the Hospice. In honour of this and to reflect our enormous gratitude, we have chosen to name our Inpatient Unit after Verity. We have 8 beds on our ward and we want to increase this in the near future to help more local people when they need it most.

Pay for a Day In Memory of Nick Kennan

On 2nd March we were delighted to welcome the family of Nick Keenan who died at the Hospice in 2020. Nick's wife Victoria, their twin daughters, family and friends came to the hospice to celebrate what would have been Nick's 37th birthday. It had always been Nick's ambition to run the London Marathon, and so in fitting tribute, Victoria and friends Ryan, Tom and Sam ran it in October 2022, with the intention to raise enough funds to ʻPay for a Day’ here at the Hospice, in memory of Nick. Collectively they raised a grand total of £14,711 which pays for more than one day of our care. We are so grateful to ʻTeam Nick’ for their efforts and we were pleased to host the family on their special day.

Are you ready for a Challenge?

We have numerous challenge events available for fundraising adventurers.

South Coast Ultra Challenge 2022... Walk, Jog, or Run it 2–3 September 2023

The South Downs National Park is a superb backdrop to take on a real challenge. Starting at Eastbourne, heading over Beachy Head and the magnificent Seven Sisters, along the South Downs Way, with stunning views over the sea, to Brighton. Devil’s Dyke, and a few ups & downs lie ahead before historic Arundel comes into view after an amazing 100 km journey. You’ll get full support and hospitality all the way – and with half and quarter distance options available –there’s a South Coast Ultra Challenge for everyone!

Drop 360

It’s abseiling, but not as you know it.

Drop 360 is Brighton’s most exhilarating thrill. It’s 138 metres down, but there’s no way back as you slowly make your way down to the beachfront below, surrounded by the best views in the city. This is a heart-stopping adrenaline rush that’s sure to stay with you.

Details of these events and more can be found on our website stpjhospice.org or call Chloe on 01444 471 598.

Remembering Molly Liberty 1920-2023

Sister Molly Liberty MBE, was the Sister in charge of community care in Ditchling and district for over 12 years. Upon her retirement in 1980, she joined Mrs Dinnage to establish the St Peter & St James Hospice. Molly was the first Sister in charge of nursing and helped Mrs Dinnage recruit staff and build the chapel. They became very good friends. When Molly’s husband became ill in 1996, she gave up this demanding role to care for him. She joined the Board of Trustees and continued serving the Hospice as a volunteer, serving teas and coffees to patients and their families. As that became too much, she worked in the Hospice shop in South Road until in 2015, aged 96, she had to stop. She had faithfully served St Peter & St James hospice for 36 years. Molly Liberty died on Friday 10th February, aged 103.

Sponsor a Nurse –Spring Appeal 2023

Hello, My name is Ali – one of your Community Clinical Nurse Specialists at the hospice. I’m asking you to support our vital work by Sponsoring a Nurse today.

My passion for hospice nursing care comes from my own experience. My Dad had a palliative diagnosis but unfortunately became unwell and was rushed to hospital and died within an hour – unfortunately I wasn't with him. It was devastating for my whole family, from then on I knew I wanted other people to have a better experience.

I started my nurse training just a few months later. It was really clear to me that palliative care was what I wanted to do. I finished training in 2010 – and four years later achieved my dream of becoming a hospice nurse.

I love my work – and now I could never imagine doing anything else.

Every patient is special and has their own fears, worries, hopes and wishes. Our job is to help them to manage their condition – so that they can then focus on living their life as fully as possible, right up to their last day. When we get everything right, when we help that person and their family to have a positive, painless, supported journey – well, it’s the best feeling in the world.

The best part of my job is being able to make a real difference to people’s lives.

We’re really aware, all of us here, that it’s the generosity of our supporters that makes our care possible. So we realise how important fundraising campaigns like Sponsor a Nurse are, because, without them, we just wouldn’t have the staff to deliver expert medical care, answer the phone, to hold a hand when bad news comes – or to be there to make sure someone in their final moments, has the support they really need.

If you can Sponsor a Nurse, you’ll be helping nurses like me to reach more people in our community. Thank you, from us all, for any help you feel able to give.

Toby’s Story

Dad always put us first. He was a wonderful and highly educated man who had enjoyed a great career – although there were lots of offers to take high-paying jobs around the world he always declined as he had one utterly selfless but incredibly important rule; his wife, children and family came first. He never once made a decision to further his own career at our expense. Our happiness and idyllic family life, on a little farm in Sussex, was simply everything he wanted.

His cancer journey lasted 14 years. At first, it was prostate cancer, which he managed to cope with, but then, it spread into his bones, and so began the last four years of his life, trying to manage an increasingly debilitating and painful condition.

The Hospice was a vital part of those last years. At first, he would just go there for the day, to meet and share experiences with others going through the same thing. As the cancer deepened, Mum began to take him more regularly.

The nurses were amazing. They held both their hands, as it were. For Dad, it was the support with pain relief that was most important. They’re the most skilled people in pain management and they managed to find exactly the right spot where the pain was. They’d fuss over him, rub his back and feet (which he found very soothing) and there was always laughter and giggling (mostly Dad).

For Mum, they were a constant friend, there to guide her through what was going on with Dad – and to help fill out the many long and confusing forms needed to get essential carer’s support.

Dad was determined to die at home – and it was the hospice nurses who worked to create a care plan to allow him to end his days there, supporting him to die in peace and with dignity.

Your generous gift of...

£12

could pay for support from a Healthcare Assistant in the Hospice.

£20

could fund one hour of nursing care on our Inpatient Unit.

£30

The nurses’ work is simply incredible. They cannot ʻsave’ the patient; but I can tell you, they can save the family.

The moments we have with our most precious loved ones become permanent memories, almost like photos, lodged forever in our minds. My final ʻphotos’ are of my beloved father happy and comfortable in his bed, surrounded by his family. It’s an enormous comfort to know that he had the very best care, right through to the end. Not to have had them at our side … unimaginable. I’m supporting the Hospice’s Sponsor A Nurse campaign because I have seen for myself the value of the care these incredibly kind, talented and experienced professionals provide in our community. Everyone we know, all those we truly, madly, deeply love will reach the end of their days. Supporting these nurses today therefore is the most precious investment in our own friends and family for tomorrow.

I would urge you to join me in celebrating their care, giving support that allows them to be there for us and our loved ones in the future.

£276

is enough to pay for one hour of care in a patient’s home by a nurse like Ali.

£1,080

could pay for a full shift of Community Nursing Care.

could fund one week of community nursing care

“Thanks to the exceptional care provided by the hospice nurses, I was able to cherish those final moments with my Dad.”

Toby Whittome

CommunityChampion

Meet Wendy Agate, Relationship Fundraiser. You may have seen Wendy out and about or in one of our shops. She is one of our faces in the community and has been working at St Peter & St James Hospice for five years.

Establishing long-term relationships with local people and businesses is critical to Wendy's role. The connections Wendy makes help us raise crucial funds for the hospice; we have to raise over £5 million of the £6 million per year required to run our hospice. Additionally, these connections raise awareness of the hospice and what help and support we offer people in our community.

Wendy is very active locally and draws on her community knowledge, skills and life experience to help businesses and individuals to engage and provide support for the hospice in a variety of ways.

She manages our corporate volunteering days where local business groups can donate their time for a good cause and boost team morale by assisting our gardening team or at our distribution centre helping sort through donations and preparing stock for our shops. Volunteers can learn about how our retail distribution centre operates and experience first hand the amazing work our teams are doing to help our organisation become more environmentally sustainable.

The feedback we receive is wonderful and confirms our valuable position in the local community. Tates of Sussex Garden Centres feel that the hospice is part of our community:

It’s a service that many of us who live locally will come into contact with at some point in our lives and it makes a difference to so many. St Peter & St James Hospice is a popular charity with our customers and staff and we are proud to support such a wonderful cause.

Wendy organises local events such as our ever popular Open Gardens Events like this are partly about fundraising and, just as importantly, about bringing our community together for a common purpose and promoting our living well message. The beautiful gardens create a feeling of wellbeing for so many.

Last year we welcomed more gardens than ever to the event and this year looks set to produce a bumper crop once again. Launching with our celebrated Hospice event on Saturday 20th May 2023 will see an array of stunning gardens open across the local area and of course not forgetting the ever popular village trails in Ditchling, Hassocks, Hurstpierpoint, Lindfield, Ringmer and Scaynes Hill. Gardens to watch out for this year include Colwood House and Broadwater in North Chailey.

For the full list of events and to book tickets in advance please visit our website at stpjhospice.org

OPEN GARDENS 2023

Life Matters Q&A

Rebecca Falzon Counsellor

For this edition we chatted with Rebecca, one of our counsellors. She runs the Hospice Bereavement Counselling Group, which supports both patients and their families, helping them deal with the feelings they might be experiencing.

Although Rebecca started her role at the Hospice quite recently, (in July 2022), she volunteered with us back in 2017 whilst on a placement for her training.

Why did you apply for the job at the hospice?

During my training I wanted to come to a hospice as I felt it would enhance my learning to work with those at the end of life. I wanted to understand what a hospice is. Through that experience I discovered that I find it really rewarding to help people at this important stage of life.

What is the nicest part of working at the hospice?

I love being part of the hospice team; everyone is so kind and all their roles are vital and valid and being part of that is something special. It is such a collaborative environment.

What would you like people to know about the service you provide?

That we are here for them; the people we reach really appreciate the service we offer. People relish the opportunity to say things that they might not be able to say to their family. It’s a privilege to support them to open up.

What has surprised you most about the hospice?

The people - how wonderful the staff all are, without each other we wouldn’t be able to deliver in the same way. Everyone is accepted for who they are and what they do

What would you change instantly at work if you could?

I love what I do but I always want to do more, to spend more time with people, to open more doors and to do more so having more resources to help people would be amazing.

The Bereavement Group

Who inspires you either at work or home?

People inspire me, the more I am with others I learn about them and that gives me inner strength. Being able to hear people’s tribulations and stories and share part of them is inspiring. We benefit from learning from others, those who are brave enough to share and trust you enough to share.

What do you like to do on your days off?

I have 2 boys so spend a lot of time on the side of a football pitch. I also love running, I do marathons and half marathons and run every other day. I love to get up early and run, its the best way of looking after myself. I also love to spend time with friends and have a good laugh.

What three words would you use to describe yourself?

Bubbly, spontaneous and resilient.

What is your motto or personal mantra?

Live for the here and now and be present.

What is your guilty pleasure?

A big tablespoonful of almond butter! (Your secret is out now Rebecca!)

What is a fun fact people might not know about you?

I once featured on the BBC in the Sir Peter Hall Glyndbourne production of Carmen the opera. I appeared alongside the world famous opera singer Maria Ewing. I was only a child at the time and played an urchin and had to sing in french!

The

is

on the third Thursday of each month. It provides a safe space for people to remember together. It’s very informal with plenty of tea and cake and offers a chance to meet with others who may have similar experiences. If you would like to find out more about this group or find out more about our counselling services please visit our website at stpjhospice.org or call 01444 471 598.

Bereavement Group run by Rebecca

held

Michelle’s parents, Margaret and Bob, were married for 50 years and were a devoted couple. When first her Mum and then Dad were diagnosed with cancer, Michelle sought help from the counselling service at St Peter & St James Hospice. They supported her through both illnesses and subsequent bereavements.

Michelle’s Story

Initially after her mum’s diagnosis Michelle’s focus was to make as many happy memories as possible while there was still time.

“It was all about making memories, because we didn’t know how long she had. She was healthy enough to have treatment which prolonged things for about 3 and a half years. During that time we were all together and she loved that, she just wanted to enjoy being in the moment. We packed a hell of a lot in, more than 3 and a half years worth!”

Taking her Mum to hotels, to see her favourite band, The Drifters (who they got to meet backstage!) and staying on the Isle of Wight, they really made the most of their time together.

Michelle’s Mum was her Dad’s carer, so when her Mum was diagnosed, as an only child she felt a huge responsibility to look after her parents. Michelle decided to become their full time carer and moved them into her home. It was then that Michelle reached out to St Peter & St James Hospice. Although

Michelle tells us about being her parents’ carer, making memories and how counselling at St Peter & St James Hospice supported her.

“It helped me as a carer; my worries, exhaustion, my emotions and my frustrations, it helped so much to talk to someone from the outside looking in with all of their experience to help me.”

her Mum felt that talking to a hospice meant that she was giving up, Michelle wanted to introduce her to it so that her Mum could build a relationship that would make things easier as her illness progressed. That connection was particularly important in reassuring her Mum that she could be cared for at home and would only come into the hospice if she wished.

“I’d gone part time at work because I was going to set up an events company and then Mum was diagnosed and it just floored me. This was more important, so I used my spare time to be with her. I used all my holiday to take her to appointments and treatment; so when she got cancer, we got even closer. We had a warped sense of humour and would laugh about stupid things… I think sometimes your sense of humour gets you through.”

“If I had any issues or problems, I would just phone up and speak to Jon, Liz or one of the team and chat it through. With all the medications, sometimes I’d feel a bit out of my depth and I could speak to someone who knew what they were talking about. When she passed away at my house, we were all with Mum.”

Almost a year after her Mum’s death, Michelle’s Dad, Bob, started to develop chest and shoulder pain. He too had cancer and unfortunately no treatment could be offered. Michelle again made as many happy memories with her Dad as she could, doing a tour of Biggin Hill Memorial Museum and driving an army tank. “He was laughing, it was brilliant, and he actually drove! We got in the back of it, with our army hats on, and he drove us down the track.”

Michelle’s Dad didn’t want to come into the hospice initially but after becoming too sick to leave his bed Michelle found it too difficult to give him the care he needed. After a particularly bad night, feeling stressed and exhausted she called Liz in the community team.

“I need help right now, I can’t do this on my own. I was beside myself, I didn’t know what to do.”

Liz visited the family that same day and saw that Bob’s condition had deteriorated. She explained that he might need to go into hospital, but Bob was adamant that he didn’t want to go. He then agreed to come into the hospice, for respite care. Once there Bob realised how comfortable it was; for Michelle it offered huge relief, enabling her and her family to spend quality time with him.

“I was able to be his daughter, not his carer….I actually think it prolonged his life if I’m perfectly honest because at home I would have obviously done my best for him but I’m not a nurse and there might have been things that I may not have spotted and you guys [nursing team] can make a decision right away.”

“Hospice care is home from home, it isn’t so clinical. He had his pictures on the wall and his DVD player, he sat out in the garden, he loved banter with the nurses. When you’ve never been to a hospice, it’s a scary place, until you come to one, then you realise it’s not scary, not at all. It’s a very loving environment.” Michelle was able to bring in his grandkids, great grandkids and Fred the dog!

During this time, Michelle was seen by Cathy, a counsellor at St Peter & St James Hospice, for both carer and bereavement counselling support.

“The counselling helped me talk about how I was feeling. It has taught me it’s ok to cry, to grieve and to miss loved ones. Cathy help me to understand how I was feeling is completely natural, as I felt lost having been Mum and Dad’s carers for 5 years. She explained that I will find my way again but I need to give myself time.”

Michelle is an avid supporter of the Hospice; "I will forever be grateful, “You guys were the ones that gave my parents and me support when we needed it.”

To find out more about our counselling services please visit our website at stpjhospice.org or call 01444 471 598.

I was able to be his daughter, not his carer… I actually think it prolonged his life.

Behind the Scenes...

Have

Recently we shot a series of short films with some of our nursing team to find out more about why they became nurses, why they chose to work in palliative care and most importantly why they choose to work at St Peter & St James Hospice.

Claire – Registered Nurse

"I always wanted to be a nurse from a young age. I was greatly influenced in my early teens by my Nan and Grandad who were admitted to a Hospice in London where we lived. This had a profound effect on me.

I have worked in other settings, with the NHS on a rehabilitation ward. Working in palliative care is quite different in that we help the patient manage their symptoms and work with the patient to improve their quality of life. Palliative care is patient-centred care.

We work in a beautiful setting, you can see the effect on people as they arrive, especially if they’ve come from hospital, where it can be a challenging time. You can see they relax instantly and that’s what I love about working here.”

Charley – Palliative Care Assistant

"I knew I would work at St Peter & St James Hospice because when I was 13 my nan stayed here for end of life care. The moment I walked in I knew I’d be back here to work. From that moment I’ve always known that this is the place I was meant to be.

The best part about my day is having time with the patients. I get to find out about them before they were a patient, what they used to do for work, where they lived, what their hobbies included and if they had any family.

St Peter & St James Hospice have given me the opportunity to start my nursing associate Foundation Degree with their full support so that I can train to become a palliative care nurse.

Going home at the end of the day knowing that I have made a difference to people at the most vulnerable time of their life is so rewarding.”

you ever considered a career in Palliative Care? Are you a nurse wishing to return to practise or feeling burnt out in your current environment? We are looking for nurses to join our specialist team and want to dispel some of the myths about working in Palliative Care.

Palliative care is a huge privilege.

Ali – Clinical Nurse Specialist Team Lead

"I’ve worked in other hospices before but St Peter & St James really stood out to me because of their amazing reputation and coming along and finding that we are so patient focused, we all work together collaboratively, whether you are from fundraising, the inpatient ward, the doctors, the community we all have the one focus of our patients and their loved ones.

The holistic care, the patient focused care, having that time and being able to relate and understand and show empathy to each person and what they are going through, that was definitely for me.

Palliative care is one of the most rewarding areas that you can work in. As nurses we have the time to spend caring for and nurturing our patients, making that real difference. If somebody has ongoing pain and it’s really debilitating and affecting their life, you can improve that, there’s nothing more humbling. It’s about improving quality of life for every individual."

Eirian – Care Director

"You don’t require experience in palliative care. We are very keen to hear from people from any walk of life. St Peter & St James Hospice is an incredibly supportive and open organisation and we’re keen to tailor inductions and supportive interventions to the individual need. We have an open approach to anyone at any stage of their career, whether they are a clinical volunteer or an advanced practitioner.

We’re keen to hear from anyone interested in working in palliative care and will support you in your induction. Palliative care is a huge privilege. I would say to anyone that felt or has that perception that hospice care is sad and upsetting to come along come and have a tour and see first hand how calm, peaceful and positive the environment is.”

Full time, part time and bank options are available. We offer a competitive salary (all nursing salaries are currently aligned with the NHS Agenda for Change pay scale) and rewards package including generous holiday, pension, opportunities for progression, support with CPD and free parking. 100% of our nurses find their role meaningful. You too could make a difference to people in our community If you're interested in learning more visit our website at stpjhospice.org or call Eirian directly on 01444 471 598

We work in a beautiful setting, you can see the e ect on people.

The Restore Shed Project

We are excited to launch our Restore Project at the Living Well Centre at the Hospice, and a Restore Shed at the Distribution Centre in Hurstpierpoint.

Combining the practical benefits of handson crafting and giving a new lease of life to furniture that might otherwise be discarded, patients, volunteers and staff have been enjoying this project, finding it therapeutic, creative and social!

It all starts with...

A donation

When items are donated to our Distribution Centre in Hurstpierpoint, volunteers set aside items that may need a bit more TLC before they are sent to our shops. Such items may just need a few new screws, a quick polish or a total makeover with a lick of paint. Smaller and medium sized items, like mirrors or chairs, are transported to our Living Well Centre at the Hospice, while larger items, such as dressers, are upcycled at our Distribution Centre in Hurstpierpoint by volunteers.

So, what are the therapeutic benefits?

Not only does this project help to divert furniture from landfill, it also has many rehabilitative benefits for our patients. The weekly session, run at the Living Well Centre, is a small group activity for people who wish to paint, engage and connect with others in a relaxed and informal setting.

“Upcycling fosters creativity and the satisfying feeling of making something new, and this can be as good for the mind as it is for the environment. Our Hospice shops already help in the fight against our throwaway culture - but some items that are donated can be difficult to sell. Once updated in the Restore Shed these items will have grown in value both financially and in their uniqueness. And who knows - in taking part you might find you also restore yourself a little bit too.”

Louise, Living Well Centre Assistant

Driven by our patients’ priorities our weekly activities focus on what living well means to them. This may mean providing a way for patients to be independent from their carer, hosting a social space for people in similar situations, or meeting with a nurse or other professional to discuss a particular concern.

What do our patients think?

Len, a 94 year old patient, has been attending the Living Well Centre for a month now. He has really enjoyed being able to be independent and doing something productive after needing to move in with his daughter, utilising the skills he has learnt from decorating and repairing his own home over the years.

“Everyone is so nice, kind, and helpful. It is a pleasure coming here. Makes you feel alive coming here and doing things. And it’s easy to talk to other people who are in a similar situation.”

Len,

Patient

What happens to the items once they have been upcycled?

Once the furniture pieces have been upcycled and renewed, they are distributed to our shops where their sale will continue to help fund hospice care across Mid Sussex, benefiting our patients and those close to them. It is also a small part of how we are trying to reduce our impact on the environment, something our Head of Retail, has been championing.

“Not only is upcycled furniture very on trend, but the items are also saved from going to landfill, helping to tackle the Climate Crisis, and contributing to the circular economy. The Restore Shed is just one of the projects that we are doing with our community to divert items from landfill, (other projects include working with Chailey Repair Cafe, Hurstpierpoint College and Brighton University) but this is the first time we have combined this with a therapeutic session. It has been great to hear the positive feedback from patients and from our retail customers who value these items and the story behind them.”

Emily Cronin, Head of Retail

Restore Shed sessions take place on Mondays from 10.30am to 12.30pm at St Peter & St James Hospice in the Living Well Centre. The sessions are open to anyone who is living with a life-limiting illness in our community. There is no requirement for previous experience in upcycling or DIY and all equipment is provided.

If you wish to attend the Restore Shed as a patient, please contact us at contact@stpjhospice.org or call 01444 470 819

If you would like to volunteer at the Distribution Centre in Hurstpierpoint, upcycling furniture or sorting donations, view our website for current vacancies www.stpjhospice.org/support-us/volunteer, email at volunteering@stpjhospice.org, or call us on 01444 471 598

Sponsor a nurse APPEAL 2023

Please help us to provide compassionate care to local families in need.

Your gift of £12 could pay for an hour of care on our Inpatient Unit.

stpjhospice.org/sponsor-a-nurse