Introduction to Services
Our story began in 1951 when local farmer, Jim Dinnage, found and rescued an abandoned donkey. Having brought the donkey home, it was clear that the lonely donkey needed a friend, and so Jim rescued another, and another and another. Soon, Jim had rescued over 100 donkeys, later forming The Donkey Club.
Tireless fundraisers, Jim and his wife Susan held donkey races on the village green in order to help fund their happy herd. However, when the couple’s infant son, Peter, was diagnosed with, and later died of Hodgkin’s Lymphoma in 1957, they redirected their focus, buying a property on the coast to run as a home for sick children and their families. The home was named St Peter’s Holiday Home, after their son.
Jim and Susan helped over 800 families at St Peter’s Holiday Home before Jim’s death in 1963, after which Susan returned to Wivelsfield to build a holiday home for the disabled on the family’s original land, alongside the donkeys. Susan named the home St Peter & St James,
in memory of Peter and Jim, which later became a nursing home in 1977, admitting its first hospice patient in 1980. Throughout the intervening decades, the hospice continued to expand and increase its capacity to care for those living with life-limiting conditions and in 1989, St Peter & St James Charitable Trust was formed in order to maintain its services.
Dame Vera Lynn laid the first foundation stone for a new ‘day centre’ at the hospice, known today as the Living Well Centre, in 1993, and in 1996, the first St Peter & St James charity shop was opened, in Lewes.
Today, the Hospice cares for more than 1,000 people each year, providing vital care services. Costing more than £6m each year to run, the Hospice receives just 13% of its income from government funds. Jim’s legacy lives on, with the generosity and fundraising efforts of Hospice supporters enabling the continuation of its work, and indeed care for its two donkeys, Dudley & Dylan, who reside at the hospice today.
Introduction from our CEO
St Peter & St James Hospice provides expert care to adults with life-limiting illnesses and those close to them, such as family, friends and carers. We are based in rural Mid Sussex amongst ancient woodland and overlooked by the beautiful South Downs; we have a rich local history in our community, having provided palliative care and support for over 40 years.
Our mission is to provide the best possible care, in the right place and at the right time to everyone who needs us.
In this booklet you will find detailed information about how we will support you and those close to you, and the different services we provide.
You can be assured that the care you receive from St Peter & St James Hospice will be comprehensive, compassionate and delivered by a workforce committed to excellence in all they do. We have an expert multidisciplinary team who will care for all of your needs, physical, emotional, social and spiritual, should you need them. All are welcome at St Peter & St James Hospice, whatever your race, faith, gender or sexual orientation.
All services we provide at St Peter & St James Hospice are completely free of charge. We rely on the generosity of our supporters in the local community to help us raise funds so we can care for those who need us. Pages 14-15 describe how we are funded.
You can also find a glossary of terms and Frequently Asked Questions on pages 16-17.
We are here to support you and those close to you. Please do not hesitate to contact us if you have any questions. Our contact details can be found on each page.
Dr Martin Powell Chief Executive
What we do
What is hospice care?
Hospices provide physical, emotional, practical and spiritual support to people living with life-limiting illness, and for people at the end of their lives. Though there may be no cure for your condition or illness, we will support you to improve your quality of life and wellbeing so that you can live and die well according to what matters most to you. We support you in a variety of ways, such as medical care, nursing care, counselling, welfare as well as rehabilitation and complimentary therapy services. Our dedicated team of staff and volunteers work together to ensure you get the best possible care and support.
Whatever your needs, we will support you in your preferred place of care, and help you make decisions about what kind of care you would like to receive now and in the future.
What to expect
From the moment of your life-limiting diagnosis, our services are available to you and those close to you.
When you are first referred to our service, or if you refer yourself, one of our specialists will contact you to discuss your needs, answer any questions and determine how best to support you. This might include a scheduled regular phone call, visits to your home, attending our Living Well Centre or outpatients appointments at the Hospice.
If your condition changes or you have any concerns or queries you can contact us at any time.
At St Peter & St James Hospice, we work collaboratively with your GP and other community professionals to make sure you receive the care you need.
Our nurses provide expert and compassionate clinical care at the hospice and in people’s own homes
This is an outline of the process you can typically expect, following a referral to St Peter & St James Hospice. You may have already had an initial meeting with us, over the phone or face to face, before receiving this booklet.
An initial phone call
We discuss your needs and find the right support for you. We will call you within:
— 48 hours if your situation is urgent — 7 days otherwise
Face to face assessment
We will arrange to meet you at your own home or invite you to visit us at the hospice.
Our team will plan your care with you
This is dependent on you and your situation and could consist of: — Regular follow up calls.
— Using services such as the Living Well Centre, welfare and benefits advice, physiotherapy and complementary therapy.
We will support you
We are on hand 24/7 with our out of hours telephone service, should you need us or have any concerns or questions.
Sometimes, it may be recommended that you come in and stay on our In-Patient Unit (IPU). This is so we can provide more acute care and support to meet your needs at that time and can often be an effective way of managing symptoms and stabilising your condition, before being able to return home. For more information on our IPU, see pages 8 and 9.
How we support you
Our team is here to support you; no query is too small, so please feel free to speak to us.
Our expert team specialises in palliative care. They can advise on managing symptoms such as pain, nausea, breathlessness, fatigue or other issues associated with your illness and provide psychological support. We can help you plan and record your preferences for your future care. We can support you in person, on the phone or via video calls, depending on what works best for you.
What we do ✓
We are available via phone 7 days a week, 24 hours a day. In urgent cases we may visit during the weekend if you need any assistance or advice. It is also possible to support you via video call.
We can discuss Advance Care Planning, including your wishes for the future should you become less well, and the type of care or treatment you would like.
We work closely with the Community Nursing teams – who arrange equipment, pressure care and dressing reviews and administer medication.
Our network of healthcare professionals can provide additional support and we can arrange this for you if necessary.
We offer support to carers, and your family and friends if they need it.
You can find the full list of our services on pages 10-11.
What we don’t do ✗
We do not visit patients at home between 5pm and 9am, but can be contacted via phone.
We do not issue routine prescriptions; this is undertaken by your GP.
We do not manage symptoms that are not associated with your life-limiting condition, e.g. arthritis.
We do not routinely administer any medications or dress wounds while you are at home – this will be handled by your local Community Nursing Service.
We do not provide equipment – this can be arranged via Community District Nursing teams. Our Physiotherapist may provide advice and guidance on equipment.
There were days when I would ring the Hospice and talk to the Community Nursing Team; they were almost like counsellors to me over the phone. They would assess Mum’s situation and advise the care services as to how best to treat Mum.
Daniella
St Peter & St James Hospice is a charity. All of our services are free of charge
Where we support you
In your home
Our care is patient-centred, meaning every decision made about your care is made with you, according to what matters to you. Often people say they would like to stay at home for as long as possible but would like to come to the hospice at the end of their life. It is important that we know your preferences, so we can facilitate this wherever we possibly can.
You can access all of our services from the comfort of your home if you are unable to travel to the hospice. This may be face to face, over the phone or via video call.
At the hospice
The central hub of the Hospice, our Living Well Centre, is a welcoming space, with level access. Here we offer a wide variety of rehabilitative services, including, practical support, creative therapies and social sessions where you can meet others facing similar issues.
Whenever you visit the Centre you might like to walk in the woods, visit our donkeys, Dylan and Dudley, or simply have a cup of tea on the deck enjoying the view.
If you need transport we may be able to arrange for a volunteer driver to collect you from your home. There is no charge for this service but if you wish to contribute financially to help us with our costs then please let us know.
If I had any issues or problems, I would just phone up and speak to Jon, Liz or one of the team and chat through the problem. 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 [Mum] passed away at my house, we were all around her.
Michelle
We provide care to people with life-limiting illness and their family and friends across Burgess Hill, Haywards Heath, Lewes, Uckfield and beyond
On the In-patient Unit
We provide specialist care 24 hours per day at our In-patient Unit, which has lovely views of our beautiful grounds overlooking the Sussex countryside.
Typically, people stay with us at the Hospice for a week or two. If you no longer need specialist care, we will arrange for you to return home, or help you find a care home if required.
Our care team is on duty 24 hours a day to provide the best possible care to you. Delicious food is provided from our kitchen for patients and is available to purchase for those visiting.
Whenever you stay with us, your relatives and friends are welcome to visit at any time. If you are near the end of your life and you want your relatives to stay with you, we can arrange this too.
Our In-patient unit is named after Verity Waterlow who kindly left us a generous legacy in 2020.
Our services – for you
Complementary Therapy
Complementary therapies are treatments that are available to you alongside clinical care. They include massage, reflexology and aromatherapy. You may find they are helpful in relieving symptoms such as pain, stress and anxiety.
Hospice Biographers
When thinking about your life, there may be a story or message you wish to share with those close to you. Our Hospice Biographers help you to make digital recordings of your story or message, which is then transferred to several memory sticks. These are then given to you, so that you can share them with others.
Counselling
Our counselling service is a confidential space with a trained professional to help you make sense of, and adjust to, life at a challenging time. Counselling can help you to improve your quality of life, feel more in control, understand your choices and improve your relationships. Counselling is available to adults and children.
Living Well Centre
We offer a range of rehabilitative activities in our Living Well Centre including medical and nursing reviews, rehabilitative programmes, practical support, creative therapies and social sessions where you can meet others facing similar issues. Together we can identify the key issues for you and decide on the support that is most likely to be beneficial.
In the last year we have supported over 1,000 local people
Physiotherapy
Our physiotherapist works with you to improve your quality of life, providing exercises, education and, where necessary, recommendations for equipment such as walking aids.
Emotional Support
Our multi professional team can support you with your practical and emotional needs and is available to your family and friends as well. This might include facilitating challenging conversations, how to communicate with your children or young relatives, plans for guardianship and tackling the effects of isolation.
Spiritual Support
When living with a life-limiting illness, people often reflect on their life experiences and questions can arise. We can help you make sense of these questions or discuss confidentially anything you feel you need to. If you are of faith, we can ask our local community faith leaders to support you. We have a quiet, reflective space called The Sanctuary at the Hospice which you are very welcome to visit.
Welfare Advice
Our Welfare Advice service can help with practical issues such as grants and benefits, financial planning, debt advice, housing and transport issues, blue disability parking badge, changes to pensions, life insurances, critical illness cover, and death in service where this applies.
Our services – for you and those
We have a range of services available to support you, your family and those close to you, available throughout your journey with the Hospice, and continued after bereavement.
Walking Groups
We have two walking groups: ‘Ambles’ for carers and ‘Footsteps’ for the bereaved. Each are held locally, once a month and are run by volunteers.
The Living Well Centre helps me with my emotional needs, as well as clinical, and has become such a support. I look forward to the sessions every week.
Colette
those close to you
Companion Volunteers
Carers may become isolated and find it difficult to do everyday tasks such as grocery shopping due to the need to provide care.
Our trained Companion Volunteers offer a social outlet to carers at home. They also offer practical support such as sitting with patients, to enable the carer to have time for their own appointments or to collect urgent prescriptions and groceries as required.
Counselling
Our counselling service provides a confidential space with a trained professional to help you make sense of, and adjust to life, at a challenging time. The sessions focus on the impact of the life-limiting illness affecting the person close to you, and the effect it has had on you. Counselling is also offered post bereavement. Counselling is also available for children.
Additionally, there is an informal monthly bereavement group at the hospice which offers a safe space for people to come together and share experiences.
Carers Cafe
If you are a carer, this session is an opportunity to come together with other carers in our community in a friendly and social environment. The cafe is held every week and is a drop in session.
Complementary therapy is available too and our welfare officer is on hand to offer advice and support. Refreshments and lunch are available.
Supporting us
St Peter & St James Hospice is a charity. It costs £6 million per year to provide our services to the community. These services are free for our patients and those close to them.
This is due to the generosity of our local community who support us with donations, fundraising, shopping and donating to our charity shops and by leaving us a legacy in their will.
Fundraising
The majority of our costs are funded by generous donations and fundraising from the local community, including;
One off and regular donations
Partnerships and sponsors
Gifts in Wills
In Memory donations
Volunteering
The care and compassion shown by all the staff to my wife Faye and to all our family was amazing, and after getting my life back to some form of normality, I decided to try and repay the Hospice by giving support as best I could.
Neil
Over 400 amazing volunteers support St Peter & St James Hospice, helping us run our shops, Distribution Centre and the Hospice itself. We could not do the work that we do without them.
Our volunteers tell us that they enjoy giving back to their community and meeting new people. Many have also found that it can help their wellbeing and gives them a sense of purpose.
Retail
Shop with us
Donate goods
House clearance
When you make a donation to us, whether that’s a direct financial gift or a donation of items for us to sell in our charity shops, we’re able to claim back 25p for every £1 that you donate via Gift Aid at no cost to you.
We receive only 13% of our necessary costs through Government funding
We receive 37% of our income through donations and fundraising
It costs over £10,000 per day to provide our care services
Its costs
£6 million per year to operate the hospice
It costs over £10,000 per day to provide expert care
Your donations and purchases in our shops contribute to over 25% of our income each year
25%
of our income is from Gifts in Wills, funding care for 1 in 4 patients
Glossary
You may have many questions about palliative and end-of-life care and St Peter & St James Hospice. This is a selection of our most frequently asked questions but if you have any other queries, please do not hesitate to contact us.
Life-limiting illness
An illness or condition which cannot be cured and is likely to lead to death. Also called terminal illness.
Palliative care
A caregiving approach aimed at optimising the quality of life for those with life-limiting illnesses. This includes physical, emotional, psychological, spiritual and practical support.
End-of-life care
Care given when approaching the end of life, to help the person die as comfortably as possible.
Preferred Place of Care (PPC)
Where someone wants to be cared for when unwell.
Preferred Place of Death (PPD)
Where someone wants to be when they die.
Advance Care Planning (ACP)
The process of making decisions about what kind of care someone would like to receive in the future, so that everyone who is providing care understands what matters to them.
Q Do I have to pay for care or services from St Peter & St James Hospice?
ANo, all of the services we offer at the Hospice are completely free for our patients and those close to them. We can provide our services for free due to the generosity of our community who support us with financial donations, fundraising, shopping, giving items to our charity shops and by leaving legacies to us in their Wills.
Q
A
I am worried that by agreeing to be referred to the Hospice I am ‘giving up’.
Not at all. The goal of St Peter & St James Hospice is to make you comfortable and help you achieve the best possible quality of life, for as long as possible. You can have palliative care while you are undergoing treatments and in fact, palliative care can help you cope with treatments by getting your pain and symptoms under control.
Q Does the hospice only care for people with cancer?
A
No, we care for a wide range of people with different life-limiting illnesses. Apart from cancer, this may include those diagnosed with conditions such as Motor Neurone Disease, COPD, and end-stage organ disease.
Q
A
Can I stay at home or do I have to stay at the hospice?
We will work with you to ensure you get the right support, in the right place, at the right time. If you want to stay at home, we will support you at home. If you want to come to the hospice, we can support you in our Living Well Centre, or in our In-patient unit if you need a hospice admission.
Q Is St Peter & St James Hospice a religious organisation?
A
No, St Peter & St James Hospice is not a religious organisation, and we welcome everyone, regardless of faith, gender or sexual orientation.
Q How to get in touch if you need us?
A
You can find all of our contact information on the back of this booklet and you can also find it on our website at: www.stpjhospice.org
Phone: 01444 470 819
Email: contact@stpjhospice.org
Website: www.stpjhospice.org