Patient Guide
About St
Wilfrid’s Hospice
Welcome from the Chief Executive Officer
St Wilfrid’s Hospice is much more than a building. For over 35 years, we have been providing tailored compassionate endof-life care both out in the community and at the Hospice, supporting our patients living with a terminal illness, and their family and friends.
At any one time, we care for at least 325 patients with the majority of our patients supported in their own home, residential or nursing home, or in hospital. Here in the Hospice we can accommodate up to 14 patients. The facilities have been designed with the patient’s comfort in mind with bright and spacious en-suite rooms that have ample space for visitors and personal belongings. Each room offers easy access to the gardens, where patients can enjoy the fresh air in peaceful and tranquil surroundings.
The Living Well Centre also offers support groups, occupational and complementary
therapies for inpatients and day visitors, acting as a great social hub where you will always find good company and plenty of tea and cake! This comprehensive guide will serve as an introduction to all the support we can offer you and your loved ones and should allow you to find out what you need to do next to access a particular service or find the answer to your questions. The team at St Wilfrid’s Hospice support the patient and their loved ones as well, with our Family Support Team and all our employees here committed to offering advice for as long as you need us.
The care from St Wilfrid’s is completely freeof-charge to patients and their loved ones. As a charity, we need the support of local people now and in the future to ensure we can continue to care for those who need us. What we do is made possible thanks to our hundreds of volunteers, our Trustees and the ongoing support of our local community, so on behalf of everyone at St Wilfrid’s Hospice, thank you.
Lois Howell
Confidentiality and Data Protection
Under the Data Protection regulations, we need to make you aware that we keep electronic and sometimes paper records in relation to your care. We share the same patient record system with many local GPs and NHS organisations. The information we hold includes your name, address, date of birth and your medical history, as well as some details about how to contact those close to you.
We may ask you about your race, religion, gender and sexual orientation among others. We ask these questions to ensure that we are
able to support you where appropriate and to ensure we include everyone when providing our services. However, you also have a right to decline to give us this information.
Relevant information is shared with your permission with other healthcare teams such as your GP, hospital clinicians or Social Services, where this will benefit your care. Along with most local GP, hospice and community services, St Wilfrid’s uses an electronic patient record called SystmOne.
St Wilfrid’s Hospice promises to respect any personal data you share with us or that we get from other organisations, and keep it safe. We aim to be clear when we collect your data and not do anything you would not reasonably expect.
If you do not wish us to discuss your care with family members or those close to you, please let us know.
Our full privacy statement can be read online at stwh.co.uk/yourinformation. A paper copy can be provided on request.
About St Wilfrid’s Hospice
About St Wilfrid’s Hospice
St Wilfrid’s Hospice is an independent West Sussex charity that has been providing support for adults with life-limiting illness and end-oflife care for over 35 years.
St Wilfrid’s Hospice offer a wide range of services, providing physical, emotional, social, psychological and spiritual support, ensuring we respect and encourage individuality, dignity and self-esteem.
We work in close partnership with all health and social care professionals involved in a person’s care, including GPs and community nurses.
St Wilfrid’s Hospice supports a population of around 200,000 people with the majority of care taking place in the community, not at the Hospice. Our services cover Coastal West Sussex and Emsworth in East Hampshire. We also provide inpatient and Living Well Services to those in West Sussex who reside north of the Downs.
We receive a limited amount of NHS funding, so most of the cost of providing our services each year is met through donations and voluntary funding.
These vital services are free-of-charge, thanks to the generous support of fundraisers and donors.
We have 12 retail shops including a furniture shop and donation centre, a retro and vintage specialty shop and several online stores.
Whether making a donation, taking part in one of our events, visiting our shops, volunteering or leaving a gift in your Will, your support makes a huge difference. Ask us today how you can support local families to receive the care, love and support they need.
Thank you
“If a family member is referred to the Hospice, then go and see the place before they do. From the minute you walk in the door and have a tour of the building you feel love and warmth and it will help alleviate your worries and fears for your loved one. You really need to see it for yourself.”
Patient’s son Glen
Our Vision, Mission and Values
Our Vision
At St Wilfrid’s we are committed to working to ensure all dying people and those close to them have access to the care and support they need.
Our Mission
Within our community, we are dedicated to providing high quality specialist endof-life care and bereavement support whenever and wherever it is needed. We will engage with our community and take the opportunity to learn, develop and improve our services. We aim to provide services that are:
accessible, flexible and responsive innovative, evaluated and outstanding caring for our resources and the environment
Our Values
Compassion: You will receive the best care with us. All are listened to, receive acts of kindness as and when it is needed and are treated with respect and empathy as individuals, regardless of circumstance.
Excellence: You will interact with us at our best. We learn from our experiences, and make improvements in practice.
Integrity: You will be treated with authenticity and with your best interests at the forefront. You are respected and can trust in our honesty.
How we are led
The Hospice is a registered charity governed by a Board of Trustees. Members of the Board are Directors under the Companies Act and offer their services in a voluntary and honorary capacity. The Trustees visit the Hospice and shops and meet regularly with the Hospice Senior Management Team.
The Senior Management Team are responsible for the day-to-day management of the Hospice.
Responsibility: You will be treated in a professional manner; you can rely on us to be proactive, supportive and take responsibility. You will see us caring for each other and taking a collective responsibility for our resources and the environment.
Collaboration: You can enjoy feeling part of the team and that we will be successful together, sharing the same aims and goals, feeling communicated with and understanding our role in supporting you.
About St Wilfrid’s Hospice
Accessing our hospice services
Who is eligible for referral to the Hospice?
Anyone over the age of 18, and occasionally 16+, with an active, progressive, advanced disease of any diagnosis can be referred for Hospice support. People are often referred at a time when they are close to the end of active treatment, or simply when they have complex physical, social or psychological symptoms.
Who can make a referral to the Hospice?
Referrals are normally made to the Hospice by a health or social care professional such as your GP, District Nurse or by the Hospital Palliative Care Team.
For some patients self-referral to the Hospice is appropriate (or to have someone else such as a family member do this on your behalf).
What happens next?
Once you have been referred to the Hospice, a clinician will contact you to discuss your referral. We aim to contact you within two working days of your referral being received.
Once you have accepted the offer of our care, we will do our very best to support you and those closest to you in every possible way.
Hospice support is provided in addition to the care you may already be receiving from other healthcare services. Your GP will remain your primary contact and will continue to oversee your care.
Ongoing contact with the Hospice
Ongoing support and contact is provided according to your needs. Some people find they do not require any further specialist support from the Hospice and are discharged from our services after a period of care and support. If your circumstances were to change following discharge, you would be able to be referred back to the Hospice.
What can I expect from St Wilfrid's Hospice?
We aim to provide you with the care that you and your loved ones need and we will work closely with other health and social care professionals, including GPs, community nurses and care agencies. However, as a charity, our resources are limited and we are unable to provide 24 hour care at home.
Out of Hours Support
Weekend and Bank Holiday Advice Line
At weekends and bank holidays, we have a nurse specialist available on the telephone from 9am to 5pm. They will have access to your records and be able to provide advice and support to you and your family.
For support outside of these hours if you have a
GP in West Sussex
The End of Life Care Hub (ECHO) is a nurse led, 24 hours a day, telephone coordination service that has been set up for patients in the Coastal West Sussex area and is a collaboration between the Hospices of Coastal West Sussex and the NHS.
Provided that you are registered with the service, this will be discussed with you upon referral to St Wilfrid's Hospice. You will be able to contact the End of Life Care Hub via:
End of Life Care Hub: ECHO
Phone: 01903 254789 (option 3)
Email: sc-tr.echocws@nhs.net
The ECHO service will have access to your records so that they can provide advice and support over the telephone for you or your loved ones. It aims to put you in touch with services that can support patients who may be in the last year of life.
For support outside of these hours if you have a GP in Hampshire
Patients with GPs in Hampshire are able to call us for support. However, after 5pm they are able to contact the Hospice to talk to the Ward staff but are advised to contact 111 for assistance if the call is urgent.
Deciding what to do when the heart stops
At St Wilfrid’s Hospice, we think it is important to discuss with you about your future care and wishes, including decisions about cardiopulmonary resuscitation. Cardiopulmonary arrest means a person’s heart and breathing stop. When this happens it is occasionally possible to restart their heart and breathing with cardiopulmonary resuscitation (CPR). Many of our patients’ discussions will result in a decision not to attempt cardiopulmonary resuscitation. A Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) record will be put in place.
Please ask your nurse or doctor for more detailed information about how decisions are made.
Our policy on resuscitation is that in an emergency, if there is a chance of success and no DNACPR decision has been made, we will attempt CPR. However, St Wilfrid’s is a specialist unit and offers a different sort of care to the hospital. Our staff are trained in first aid CPR, but we do not have the facilities or specifically trained staff to offer advanced cardiopulmonary resuscitation. Therefore, an emergency 999 ambulance will be called.
About
Wilfrid’s Hospice
Your care at home
Our Hospice Community Team care for patients in any setting, wherever they are living.
Contact telephone number: 01243 775302
We have a team of Clinical Nurse Specialists (CNS) who work closely with your GP and NHS community teams along with other health care agencies.
They will visit you at home (or may see you at our Living Well Centre) and help you manage your symptoms and provide emotional support helping you and your family with any difficult concerns.
Our team is available from Monday to Friday from 9am to 5pm. However, if you need help and advice at weekends between 9am and 5pm you will be able to speak to one of the team over the telephone.
The aim of our team is to make sure you have access to all the services you may need and help you make decisions about your current and future care.
If appropriate, our CNS can facilitate admission to our Ward, providing there is availability. They will work closely with other healthcare professionals and may refer you to other Hospice services such as physiotherapists, occupational therapists or counsellors. If you are under the care of the Hospice and approaching the last few weeks of your life, you may choose to stay at home to be cared for.
Our team aim to provide nursing care and support with your hygiene needs, helping
you to feel comfortable and in control of your symptoms as well as feeling supported alongside your loved ones.
An overnight sitting service can occasionally be provided to help you with this care, enabling your family to rest. We work closely with your community nurse, GP and other community services and may sometimes need to share care with others.
What our team would like from you:
We recognise that we are guests in your home. In order to assist with your care we would appreciate that:
Your Community Nurses’ notes are available
Our team, if appropriate, have access to bed linen and towels for the patient
That they also have access to a toilet and handwashing facilities
Our staff are given a smoke free environment to work in
Meet the Hospice Team
We offer a range of services to support you
The Family Services Team
Coming to terms with serious illness and dying can be difficult and distressing for all concerned. When someone is seriously ill, everyone around them is affected. Our Family Services Team, provides patients, family, and friends with an opportunity to identify and deal with the emotional, social, and spiritual impact of illness.
The Family Services Team consists of Counsellors, Social Workers, Chaplains and trained volunteers who can provide emotional, psychological, social and spiritual support. They are available to you, your loved ones and friends.
Spiritual Care
We all have things that give our life meaning, worth and purpose and these create our own unique spirituality. Religion is one aspect of spirituality – other forms might include a love of nature, music, or family – anything that helps people make sense of their lives. Spiritual care is available to all people regardless of their beliefs. St Wilfrid’s Hospice does not impose any agenda, religion or belief system on patients. Sometimes, a patient might like a Spiritual Carer to pray with them, to support them through a time of distress, or simply sit with them. At other times, the involvement of spiritual care may be more formal, such as giving communion, a blessing, baptisms, weddings and funerals. The team are able to access help from local faith communities.
Social Work Team
A member of our social work team is available to discuss any concerns you and your loved ones may have with the psychological, emotional and social care difficulties you might face during your illness. This may include helping you support children and other family members. Please ask if you would like to speak to someone from the team. They can signpost you to other services who may be able to assist you for matters such as housing and benefits.
Hospice Visitors
Hospice Visitors are volunteers who are able to provide emotional support. They are available to discuss your thoughts and feelings when you are possibly keeping thoughts and feelings to yourself and feeling unable to share them with anyone else.
Our Medical Teams
Doctors
St Wilfrid’s has a medical team that provide specialist medical support across all of our services. They may see you in your own home, or at the Hospice. The medical team provides 24 hour on call support for our Ward and specialist consultant advice for the ECHO Hub. Pharmacists
We have a pharmacist who visits regularly during the week and is on hand to answer any medicine related questions or problems.
The
Your care at the Hospice
We offer a range of services and care at the Hospice
Our specialists plan admissions based on the support that you require rather than how long you may have been on the waiting list. This means you may have to wait for a few days until a room is available. If you require urgent support, we can admit you over the weekend when we have availability.
We understand that coming into the Hospice can be quite daunting, so we are happy to show you and your loved ones around beforehand, this may help you to feel more comfortable and give you the opportunity to ask more questions.
A common worry is that anyone who comes to a hospice will never go home again. Many patients choose to spend their last days with us because they know the care they will receive is outstanding. However, for some of our patients, they come to stay to help gain control of their symptoms or for a full assessment of the support that they require. They may only need to stay for a few days before going home again or may move to a nursing home for longer-term care.
Our Ward nursing staff provide 24 hour nursing care and are highly-skilled and experienced in providing you with the support you need. If there is anything you need during your stay with us, please just feel free to ask. It is important for all the team at St Wilfrid’s Hospice to provide you and your loved ones with the highest level of care possible, personal to you.
The Ward provides short stay care. We are unable to provide long stay care. Your ongoing and long term care is carefully planned based on what you may need, this will be done in full discussion with you and if appropriate your loved ones, the GP, the NHS community teams and St Wilfrid’s Nurse Specialists.
Facilities on the Ward
The Hospice has been furnished to a high standard with specialist equipment to aid your comfort and support independence.
Your privacy and dignity are very important to us, and you will be cared for in a single room with an en-suite shower room.
Facilities we provide include:
Digital television and radio
Access to Wi-Fi
A lockable drawer in a bedside locker
Rooms with French doors opening onto a patio and garden
A mobile phone is available so that you may receive calls
Towels and linen
Separate bathrooms with a Jacuzzi bath
What to bring with you
Most people bring in their nightclothes, dressing gown, slippers and toiletries. We encourage you to bring in clothes for when you feel able to get dressed during the day.
You may wish to bring in your own electrical items but we need to check the safety before they are used in the Hospice. Please let the nursing staff know what devices you have brought in.
Valuables
We cannot take responsibility for the safekeeping of any large amounts of cash, valuable jewellery or property, so please leave them at home or give them to a family member.
It’s important that you bring in all your current medication and any walking aids
Meals
We serve breakfast, lunch and dinner; if required there are snacks and drinks available throughout the day, evening and night. Our chef will visit you daily to check your menu choices and any special dietary requirements you may have. If you would like something that is not on the menu, please ask.
The Ward Kitchen is an area for you and your visitors to use. Please feel free to help yourselves to any provisions such as tea, coffee and cold drinks from the kitchen. There is no charge for these, but any donations are always gratefully received.
Coffee Shop and Vending Machine
You and your visitors are welcome to use the café facilities. A vending machine is also available in the Ward Kitchen for snacks and drinks.
At the Hospice
Alcohol
If you enjoy an alcoholic drink, you are welcome to bring in your ‘usual tipple’. Your nurse or doctor will advise if you should not drink alcohol when taking certain medications. Excessive and harmful alcohol use and drunken and disorderly behaviour by patients or visitors will not be tolerated.
Smoking and e-cigarettes
If you are on oxygen therapy, for your own safety, you must discontinue your oxygen at least 20 minutes before smoking. Please be aware that even after oxygen is turned off,
Keeping in Touch
Internet
Access
Our Hospice Wi-Fi is: STWH_Guest
The Password is: wilfrid2013
Telephone
Calls to reception can be transferred to the Ward mobile for patients to use. You are more than welcome to use your own mobile phone and charge it during the day. We asked for fire safety reasons that charging electronic devices is done during the day before 5.00pm.
Television
There is terrestrial or Freeview television with a remote control available in each room. We do not have facility for cable or satellite channels.
For those who are hard of hearing you will be offered Bluetooth headphones so that you may listen to the TV or radio in comfort without disturbing other patients and visitors.
increased oxygen levels still linger on hair, skin and clothing. This can create a danger of serious burns to the head, face and chest when lighting up or using a vapour device. If you smoke, please do so in the garden only.
Herbal Medicines
You may be taking a herbal preparation such as CBD oil or hemp oil that has been purchased as food supplements in a health store or online. Whilst we are not able to prescribe or administer these supplements and may advise you that they may not be safe to take, you are welcome to bring them in with you. The use of illegal drugs is not tolerated on our premises.
Use of video calling
Some families may wish to use technology to be a presence during your stay especially if they are not able to be with you. We fully support this way of keeping in touch.
There will be times when we will be giving you some personal care so for your privacy, we will ask visitors and loved ones to leave the room and in the case of video calling will ask for the connection to be disconnected. whilst we assist you in the care you need.
Letters to loved ones
We'd like to make it easier for you to keep in touch with your friends or family members while they're staying on our Inpatient Unit. Many patients will be able to pick up the phone and call or message their friends and family members themselves. However, not all will be able to do this. If you would like to send a message or a letter to a loved one who is currently an inpatient at St Wilfrid’s Hospice in Bosham, please do so by email on: ward.patients@stwh.co.uk.
Covert Surveillance
Covert surveillance is described as the use of a secret hidden cameras or other recording equipment to monitor someone’s care. St Wilfrid’s Hospice will not do this and will always discuss with you when using technology to assist in your care.
However, some families may feel worried about how you are being looked after and may consider using hidden cameras or recording equipment to monitor the care we give. If you or your family are worried about the care you are receiving, we would like to encourage you to tell us about your concerns before you consider taking such action so we can use your feedback to take immediate action.
Installing a hidden camera that captures intimate personal care affects that individual’s privacy and can be an intrusion on others using the service. These people may feel you are affecting their human rights.
Visiting
All visitors including children are welcome. We have a number of family lounge areas where your visitors can relax. It may be possible for a loved one to stay overnight, if appropriate. This is limited to one person.
Please discuss with the nursing team if this is possible.
Visiting times are 11am to 10pm – however please be mindful that our patients may be very fatigued and may not want to have visitors throughout this period.
For patients who are imminently dying there will be some flexibility in the visiting times, please discuss this with the nurses.
Please enter the Ward via the main Hospice entrance and leave via the Ambulance doors next to the Ward reception. For security and fire regulations please sign in using the visiting book in reception.
Visitors Parking
Onsite parking is free for visitors with easy access to the building. Visitors are asked to keep the ambulance bay at the patient entrance clear. Walton Lane is a narrow country lane and visitors are strongly advised not to park along the lane.
Fire Alarm
If the fire alarm is activated for any reason, visitors will be asked to evacuate the building by the nearest fire exit and move to the assembly point located by the Ward.
If necessary, they can be assisted by Hospice Employees.
The Nursing team will remain with you and depending on where the fire is located they will move you to a place of safety or evacuate the building with you.
Pets
Dogs are welcome to visit, and if you have any other pets you would like to see, please ask a Hospice employee. We respectfully ask that they be supervised at all times such as keeping them on a lead and not allowing them on the furniture. Unfortunately, they cannot stay overnight and we ask that waste is removed and correctly disposed of.
We have several volunteer Pets As Therapy (PAT) dogs that would love to come in and visit you, please do let one of the nurses know if you would like to meet one.
Laundry
Whilst we do have the ability to provide some laundry facilities we ask that if possible you make arrangements to have a relative take away routine laundry.
Hairdresser
A volunteer hairdresser visits regularly. Please let a nurse or a Ward clerk know if you wish to have a haircut. This is free, although donations to the Hospice are greatly received.
Lighting
Throughout the building, smart technology has been installed to control the lighting and ensure it is energy efficient. In your
room, this can be manually operated from the bed head to provide whatever lighting needs you require. However, at night we like to try to provide a restful environment so at certain times the Ward corridor, family lounges and snugs as well as the car park, garden and courtyard lights will dim and then automatically switch off at set times.
Alternative lighting can be provided for the family lounges if necessary.
Quiet Area and Chapel
A quiet area and chapel are located near the Ward reception; it is a space for everyone; faith or no faith. You can light a candle, pray, read, write down your thoughts or just enjoy some peace and tranquility.
A visitor’s book and the Books of Remembrance are also available.
Chaperone
We are committed to respecting your wishes and to ensure you have the best possible experience from our services and employees. Please talk with a member of the team if you would like another healthcare worker to act as your chaperone during your consultation or treatment.
Living Well Services
Our Living Well Centre is available to both patients receiving care on the Ward and at home, as well as their families and loved ones.
The Living Well Centre offers a variety of support, including mindfulness, exercise sessions, future planning and complementary therapy. Please see the next section for more information.
Living Well Services
St Wilfrid’s Living Well Centre supports people who are living with a life-limiting and progressive illness. We support people aged 18 and above, regardless of diagnosis and extend our support to their friends and family members during any stage of the illness, including bereavement.
The Living Well Service is run by a multiprofessional team. The team includes physiotherapists, occupational therapists, complementary therapists, chaplains, social workers, nurses, doctors as well as a team of volunteers. We support people living with life-limiting conditions through a range of therapeutic activities and groups or via one-to-
one consultations with our specialist team. Once you are referred to us, we will work with you to identify the most suitable programme to meet your needs.
Living with illness can be hard. There are different ways to manage illness. Some find it helps to talk with those with similar problems, learning together how to manage. Many find staying active through exercise and other activity helps. Having fun with others can also take your mind from your illness. It is all about enabling you to enjoy life – understand yourself better, connect with other people and feel the benefit of kindness, friendship, support and having a good laugh.
Some of the types of support available
Exercise Sessions: Explore fun exercises to help maintain and improve movement, balance and muscle strength to make the most of your physical wellbeing through groups or 1:1 sessions in our gym.
Mindfulness Sessions: A space to experience the practice of being fully present, aware of where we are, and not overwhelmed by what is going on around us, guided by a trained professional.
Future Planning: A chance to talk about important things at the end-of-life such as planning Wills and funerals. How do I start difficult conversations and my future preferences?
Breathe Well, Live Well Course: Fatigue and breathlessness are common problems. This course helps to equip those attending with the understanding and tools to manage these difficult symptoms.
Alternatively, simply come along for a cuppa and some company. Sometimes it is good to have a change of scenery and talk to others in the same situation.
Some of our services may also be available to you in your own home and we also have podcasts and videos available.
Rehabilitation Team
Our specialist physiotherapists and occupational therapists work with people living with life-limiting conditions in the community, inpatient unit and the Living Well Centre. Their main focus is helping people achieve their personal goals in order to maximise quality-oflife and maintain function and independence, supporting people to live their lives to their full potential.
A physiotherapist can play an important role in helping you manage your condition through a number of means including:
Assessment of mobility and balance, enabling you to move safely and independently indoors and outdoors.
Tailored exercise programmes aiming at maintaining and improving muscle strength, range of movement, balance, endurance and mobility
Functional rehabilitation – to maintain or improve independence, reducing dependence on carers and encouraging self-management and a sense of control.
Non-pharmacological symptom management of pain, breathlessness and fatigue.
Providing walking aids such as sticks, walking frames, wheelchairs
Managing your pain
Offering a range of techniques that help you to support yourself
“Like most families facing terminal illness we were a little apprehensive about coming to a hospice as we thought it was somewhere you only came to die. We couldn’t have been more wrong. Within 3 days we witnessed a huge change in Sally. With her pain and mobility being properly managed she had a quality of life we hadn’t experienced in months. All the nurses really took the time to get to know us.”
Sammie
The occupational therapist can find practical solutions to everyday situations and problems that are important to you. They can help adapt, advise on or provide equipment for anything from personal care and domestic activities to managing breathlessness and relaxation techniques.
The team will work alongside you to help you maintain your quality-of-life for as long as possible.
Complementary Therapy
The wellbeing of the whole person (mind, body and soul) is important when trying to cope with a long-term condition, subsequent treatments and the progression of a disease. Caring for or losing a loved one in this situation can also be overwhelming on every level.
The complementary therapy service has a holistic and supportive role in looking after
the individual, helping to ease the symptoms of stress and anxiety, improving your sleep and general comfort.
It can be safely used alongside conventional medicine and is not offered as an alternative treatment for disease, but for the purpose of support and relaxation only. Complementary therapies are widely used in palliative and endof-life-care and with an experienced therapist are safe, enjoyable and beneficial to those with a cancer diagnosis as well as other long-term conditions.
Your therapist will assess your needs individually and adapt what they do to suit you. We have a variety of therapies that can be offered so please ask which ones are available and what they can do to help.
If you have any concerns about the session, please ask a therapist at the Hospice or call 01243 775302 and speak to the Complementary
Living Well Services
Travelling to the Hospice
The Hospice site is situated in Walton Lane, Bosham, PO18 8QB.
Parking
Parking is free. For those attending the Living Well Centre or Ward there is a drop off zone with easy access to the Hospice.
Please be aware that there is a limited amount of parking and that at certain times of the day parking can be busy. We encourage visitors to use public transport if possible.
Walton Lane is a narrow country lane and visitors are strongly advised not to park along the lane.
Transport
In some circumstances, if you are unable to access our services because you have difficulties in travelling, our volunteer drivers are able to provide some limited transport.
Once you have been referred, we can discuss with you options to help you access our services.
Bus and train routes
Bus stops on the A259 within 50 metres serve the following routes:
700 - Flansham Park, Chichester, Portsmouth
Mon-Sat: every 20 mins, Sun: every 30 mins
56 - Bosham, Chichester, Arundel (Circular)
Mon-Sat: every 90-120 mins
Bosham train station is approximately 9 mins walk away with trains operating twice an hour in either direction to Portsmouth and Barnham.
Carer support
A carer can be anyone – husband, wife, partner, family member, friend or neighbour
It can be devastating to hear that someone you are close to has a life-limiting illness. We understand journeying with them through one of the most difficult times of life is hugely challenging for families and carers of the person who has become ill. Our team provides specialist advice, care and support for everyone affected, whether your loved one is at home, in the Hospice or other places of care, for the duration of the illness and beyond.
Carer support is available to everyone: the patient and the family, loved ones, carers and friends of a patient already known to the Hospice through any of our services. Whatever you are finding most difficult, we will tailor our support and care for your individual needs.
How we can help?
Help with finances and benefits
You may be entitled to financial help with the costs of caring, and we can help you find out what you are entitled to and how to claim it.
Emotional and psychological support
The stress experienced by many carers can show itself in many ways. Carers may experience a mixture of psychological and physical complaints such as anxiety, low mood, fatigue etc. We can help support them during this difficult time.
Support for young carers
People can be carers at any age, and often a child or young person may be caring for their parent, grandparent or other relative. We can support them in getting the help they may need to manage.
Aids and adaptations
There are many aids and adaptations which can make life easier at home, and which can help people stay in their own homes for as long as possible. We can offer you advice on products that may help you and the person who is helping you.
Complementary therapy
Complementary therapies are available not only to you but also to those close to you. They can help to ease the symptoms of stress and anxiety, improving sleep and general comfort.
Support groups
We run support groups specifically for carers, to enable them to meet other people in the same situation, and to share knowledge and experiences. We also invite speakers to come and explain what other support or services may be available for you.
Bereavement support
We can provide support for those who are affected by the death of someone close who has been known to our services.
Additional Support Services
Others involved in your care
Catering Team
The portions, colour, taste and texture of food can look so different to someone who is unwell and finding it difficult to face food. Our kitchen team will work closely with you to cater for your needs.
They can also cater for special occasions and family celebrations like weddings, birthdays and anniversaries, and are responsible for feeding employees and catering for the many and varied functions.
Clinical Administrators
The Clinical Administration Team (CATs) process all referrals in to the Hospice and answer incoming telephone calls relating to patient care. They type clinical letters and support the clinicians with administrative tasks. They may be the first person to talk to you or your family on the telephone.
Housekeeping
Our valued team of housekeepers carry out housekeeping duties in all areas of the Hospice, ensuring a clean and germ free environment.
Receptionists and Ward Clerk
Our team of receptionists and Ward clerks provide a warm and friendly greeting at the main reception, Ward and Living Well receptions and deal sensitively and empathetically with people who are going through a challenging time in their lives. They will ensure you receive your phone calls and messages and will ask visitors to sign in.
‘Meet & Greet’ volunteers will show visitors to your room and answer telephone enquiries to support them.
Facilities & Maintenance Team
Our facilities team are responsible for the health and safety of the building so you may see members of the team around. They will only access rooms to make repairs or do maintenance checks if convenient and with your permission.
Other support services
Other departments, such as the Finance, IT and HR teams support our clinical employees in delivering our services. They are committed and dedicated to ensuring that all who access our services receive the best care they can.
Voluntary Services Team
St Wilfrid’s Hospice team of volunteers enable us to continue to provide our high standards of care for those we look after.
Our volunteers help in almost every area of the Hospice and the local community, adding an extra dimension of skill, knowledge, care and experience. In 2012 the Volunteers gained the Queen’s Award for Voluntary Service – this is the highest award given to volunteer groups in the UK.
Every volunteer completes a thorough induction and training programme before being assigned to a role.
Offering you and your visitors refreshments and assisting at meal times are our Ward volunteers who are available from 9am to 8pm every day.
Our trained complementary therapists offer gentle touch massage to you and your loved ones and our Meet & Greet volunteers ensure everyone receives a warm welcome.
You will also see our volunteer gardening team busy working on a Tuesday and Thursday morning and they are always happy to chat and answer any questions you may have regarding our gardens.
We also train volunteers as patient companions who, at your request, can visit you for social contact and company, for instance to sit with you whilst you eat a meal, watch TV or to read to you, or maybe to take you for a walk around our beautiful gardens, please just ask.
Other important Information
Future Planning
Advance Care Planning
When facing a life-limiting illness, it is important that those caring for you are able to offer you the help and support that you need. This involves getting to know you, understanding what matters most to you, and who is important to you. As part of the process of planning your care a member of the clinical team may ask you about your preferences for care in the future - a process called Advance Care Planning. This is to enable you to think about some of the options that may be available to you in the future and to express your wishes.
Lasting Power Of Attorney
We will always support your right to make your own decisions. If this becomes difficult for you because of your illness, we will make every effort to support and involve you in making any decision that affects you.
A lasting power of attorney (LPA) is a legal document that lets you (the ‘donor’) appoint one or more people (known as ‘attorneys’) to help you make decisions or to make decisions on your behalf. This gives you control over what happens to you if you cannot make your own decisions. Please share a copy with us.
There are two types of LPA: health and welfare, and property and financial affairs. You can choose to make one type or both.
To register a Lasting Power of Attorney you will need to apply online: www.gov.uk/ government/publications/make-a-lastingpower-of-attorney
Advance Decisions to Refuse Treatment (ADRT)
ADRT is a written statement, which lets other people know about any specific treatments that you do not want to have in certain situations. It means they will know your wishes if you are unable to make decisions yourself.
Before making an ADRT, it is important to discuss it with one of your healthcare professionals. You will need to review your ADRT regularly to make sure it is up to date and reflects your current wishes.
Do Not Attempt Cardiopulmonary Resuscitation (DNACPR)
You may hear doctors or nurses talk about DNACPR. This is a document stating that cardiopulmonary resuscitation (CPR) is not going to be helpful to you and should not be attempted. CPR is a way of trying to restart the heart and breathing when they have stopped. Talk to your healthcare team about making a decision about CPR.
ReSPECT
Recommended Summary Plan for Emergency Care and Treatment is a document that allows you to express your end-of-life treatment and care wishes when you are unable to make or express a choice. If you have a ReSPECT document or would like to discuss one, please let us know.
Wills
There are many important reasons for making a Will. Without a Will, the law sets out the rules that apply and so your assets may not be dealt with as you would wish. Most solicitors are able to visit the Hospice. Please be aware that no Hospice Employee or volunteer is permitted to witness the signing of a Will.
Organ
Donation
What is organ donation?
Many people in the UK are waiting for a new organ as their own have stopped working properly and they need an organ transplant. When we die, we might be able to give our organs to help someone who needs a transplant.
The organ donation system in England now makes it easier for people to become donors.
You can register your decision on the NHS Organ Donor Register, tell loved ones your decision or choose to do nothing. If you choose to do nothing, you will be treated as having no objection to becoming an organ donor and your consent will be deemed.
Telling your loved ones your decision helps them if you die in a way where donation is an option. When approached, your loved ones will know your organ donation decision and be able to honour that decision.
Do I need to make a choice?
No. However, if you don’t register a decision (opt in or out on the NHS Organ Donor Register or tell your family) then you will be treated as having no objection to being a donor. This is known as deemed consent. You can ‘appoint a representative’ if you wish. This means that you can ask a friend, family member or religious leader to make the decision for you.
If you would like to talk to someone about your choices then call 0300 303 2094.
Equality and Diversity Support
St Wilfrid’s Hospice provides access to highquality palliative care for all, inclusive of age, gender, faith, race, ethnicity and sexual orientation. St Wilfrid’s employees and volunteers commit to treating everyone with respect, and sensitivity without discrimination.
This includes addressing the health inequalities and accessibility issues experienced by many people who are in need of our services. It is safe to disclose any information to a St Wilfrid’s employee. We also aim to cultivate and foster links with all communities in an effort to raise awareness of the Hospice and understand how we can help.
How we support LGBTQ+ people at end of life
Sexual orientation and gender identity can be significant parts of who someone is. Supporting someone with a terminal illness includes allowing them to feel comfortable to express themselves.
Some people feel more comfortable than others about sharing information related to their LGBTQ+ identity. Sharing your gender identity and sexual orientation may be important in relation to treatment preferences, and your priorities. When facing life-limiting illness, those close to you may also need support. Sharing information about who is close to you can also help to make sure their needs are considered and will also help health and social care professionals to know who you would like involved in discussions and decisions about your care.
Veterans
We are interested in knowing if you have ever served for at least one day in the Armed Forces or Merchant Navy, as we may be able to put you in touch with veteran support groups. We may also be able to apply for additional funding so we can continue to help you and others like yourself.
Private Health Insurance
There are no charges to anyone for our services. However, if you have a policy for private health insurance, St Wilfrid’s Hospice may be able to request a small donation towards your care from your insurance company. This will not affect your policy and you will not be asked to pay an excess. However, it will help us to continue to help others into the future.
St Wilfrid’s Hospice will write to your insurance company with the dates of any home visits by one of our doctors or nurses and/or admission to the Ward you may have had. The insurance company will then make a gift to the Hospice towards your care.
Our safeguarding policy
St Wilfrid’s Hospice is fully committed to safeguarding the welfare of all those it cares for. Safeguarding means protecting the health, wellbeing and human rights of adults at risk, enabling them to live safely, free from abuse and neglect. It is about people and organisations working together to prevent and reduce both the risks and experience of abuse or neglect. For our full policy, please visit our website on stwh.co.uk
Access to clinical records
Currently it is not possible for you to access your record on the Hospice’s electronic clinical record called SystmOne. However, if you would like a print out of an individual consultation or record please ask your doctor or nurse.
Copies of clinical correspondence
In some clinical settings people are invited to ask for copies of clinical letters sent, for example, from their Consultant to their GP. This is not done routinely at St Wilfrid’s, but if you would like a copy of the letters please ask your nurse or doctor.
CCTV Surveillance
So that we can protect you and your loved ones and ensure the premises is secure, safe and protected, especially out of hours, we operate a Closed Circuit Television (CCTV) system. The systems will be provided and operated in a way that meets our legal obligations and with an individual’s right to privacy.
Surveillance cameras are located at strategic points around the Hospice building, principally at the entrance and exit points and the external environment such as the garden and car park. The surveillance cameras are not focussed on any areas where privacy is important. Where external cameras can overlook rooms ‘privacy screens’ on the camera image have been fitted.
CCTV signs will be prominently in place to inform you and your visitors that a CCTV installation is in use. These signs state that monitoring is in use, the name of the organisation responsible, and gives contact details for any enquiries.
If you have any questions or concerns about the use of CCTV please ask a Hospice Employee.
Illicit / Recreational Drugs
We are aware that drug use is a sensitive issue and asking about it may cause anxieties for you. However, it is important that you are open with us about any drug use so we can tailor our care to your needs. We may have a conversation with you about how the drugs may be affecting your health.
Illicit substances cannot be brought onto our premises and we may ask you or your visitor to leave if this is found to be the case.
Your Data Matters
To help the NHS to improve your individual care, plan local services and research new treatments or services we will share anonymised information about your health and the care you receive.
National Data Share: We submit activity data to the NHS commissioners and other bodies annually. This does not contain individual patient data.
Surveys: You may be asked to complete surveys about the Hospice and sometimes about individual members of the team as part of their professional development.
Audit and Research: On occasions, we use anonymised data for a clinical audit. The surveys and audits help us to improve the quality of our services. This may involve the sharing of anonymised de-identified patient data with other researchers.
Opt-out choice
You can choose to opt out of sharing your confidential patient information for purposes of clinical audit and anonymised national data collection.
Choosing to opt out will not affect your care or treatment and you can also still consent to take part in specific research projects.
There may still be times when your information will be used: for example, during an epidemic where there might be a risk to you or to other people’s health or the occurrence of a notifiable disease – we share personal confidential data with NHS and other bodies when required by law.
If you do not want your confidential information to be used for research or planning, you can opt out securely online or through a telephone service.
Nhs.uk/your-nhs-data-matters or call 0300 303 5678
Supporting the Hospice
We strive to help every patient and their loved ones to make the most of every day and could not provide this care without the generosity of people like you!
The vast majority of our costs need to be met from our local community and other voluntary sources and we are indebted to all those who make a donation, take part in a fundraising event, or remember the Hospice in their Will.
If you or your loved ones would like to support St Wilfrid’s Hospice, we would very much appreciate it. Your help will enable us to continue to work with and care for other patients in similar circumstances in the future. For further information, please ask to speak to any Hospice Employee or volunteer.
Alternatively, cheques made payable to St Wilfrid’s Hospice can be sent into the Hospice. If you are UK taxpayer, we can provide you with a gift aid declaration form; we can claim 25% more on your gift from the government at no cost to you!
Our Shops
Every item generously bought in one of our shops contributes to raising around £2million towards the £9million it costs to run the Hospice each year.
Donations of all shapes and sizes can be made at our Donations Centre on Terminus Road, with furniture collections from your home also possible. With 12 shops around West Sussex and our online stores, making a contribution to St Wilfrid’s could not be easier than bagging yourself a bargain.
Sharing your story
It is helpful for us to let the people in our community know about our work and we are always interested in hearing your story, particularly how we may have helped you and your loved ones.
If you would like to share your story about the care you are receiving at the Hospice, please let a Hospice Employee know. Alternatively, please email fundraising@stwh.co.uk.
Comments, Complaints and Compliments
Your Feedback
We are committed to providing a quality service to support you and your loved ones. To do this we continuously look at ways of improving the way we work. We would greatly appreciate your feedback so that we can ensure other patients and their loved ones receive the best care possible.
We strive not to give any cause for complaint but every comment is recorded and acted upon. Quite often, we can resolve a complaint immediately. If not we will investigate and deal with it quickly and confidentially.
If you have any problems with our services, however small, please raise them at the time, as it is much easier to help if we know you are not happy.
What to do if you are not happy with the care you receive
We have a formal complaints policy and procedure and any written complaint should be addressed to our Chief Executive, Lois Howell. Complaints will be acknowledged within two working days of receipt and you will receive a full written response following a full investigation within 20 working days of receipt. If you would like a copy of the policy and procedure, please ask a member of staff. It is often appropriate for a complainant to meet a senior employee and we are always pleased to talk through any issues. Please do let us know as soon as you can if you have a complaint.
Care Quality Commission
The Hospice is registered and inspected by the Care Quality Commission (CQC) under Health and Social Care Act 2008 (Regulated Activities) Regulations 2010.
The CQC as part of their inspections may wish to make contact with you or your family about your experience of our services.
A copy of the CQC report may be obtained from the Hospice or directly from the CQC. Reports are also published on the Care Quality Commission’s website www.cqc.org.uk and our St Wilfrid’s Hospice website www.stwh.co.uk
Complaints may also be made directly to the Care Quality Commission, Finsbury Tower, 103105 Bunhill Row, London EC1Y 8TG, telephone 03000 616161.
iWantGreatCare
We would be grateful if you could rate and review your experience of the Hospice on the website iwantgreatcare.org.
Search for St Wilfrid’s Hospice Chichester and you can leave a confidential review.
Suggestions on this guide
If you have any suggestions or comments about this Patient Guide please talk to any Hospice Employee.
If you require a translated, audio or large print version of this guide, please ask.
Key Contacts
Hospice
Telephone 01243 775302
(Office hours 9am - 5pm 7 days a week)
Email for general enquiries general@stwh.co.uk
Email for clinical enquiries nesea.stwh-clinadmin@nhs.net
ECHO Hub
For patients registered with a West Sussex GP 01903 254789 option 3
(24 hours a day every day) sc-tr.echocws@nhs.net
Out of hours service
For patients registered with a Hampshire GP such as Emsworth Surgery 111
NHS Community Nursing Teams
West Sussex 01903 254789
Hampshire 0300 121 0471
Hospitals
St Richard’s Chichester 01243 788122
Queen Alexandra Portsmouth 02392 286000
Bognor War Memorial Hospital 01243 865418
Worthing Hospital 01903 205111
At Home
At home is where the majority of our care takes place, with Clinical Nurse Specialists providing symptom control, respite for carers and emotional support. We aim to make the last days of patients’ lives as supported, comfortable and dignified as possible.
At the Hospice
On the Ward you can expect first-class clinical care for those living with terminal illness, given in a home-from-home atmosphere. Our employees take time to listen and understand the needs and wishes of our patients and always try to go above and beyond to make sure everyone gets the care they deserve.
Living Well
The Living Well Service offer patients, carers and those close to them a range of social activities and complementary therapies to enrich their daily lives. A team of specialist employees are on hand to offer emotional, physical, and practical support. We encourage independence and resilience, enabling patients to live with dignity, perseverance and joy.
Patient Guide Version 3, April 2024
St Wilfrid’s Hospice (South Coast) Limited, Walton Lane, Bosham, West Sussex, PO18 8QB T: 01243 775302 | E: general@stwh.co.uk Registered Charity in England and Wales No: 281963. Registered as a company limited by guarantee in England and Wales No. 01562110.