The Patient s Handbook

Transcription

1 The Patient s Handbook All you need to know about being an in-patient at St Luke s Adding quality to life St Luke s The Patient s Handbook 1

2 Contents Welcome to St Luke s Hospice 5 What is St Luke s? 7 Who our patients are 7 Caring for individual needs 7 What we can provide for you 8 How you become a patient 8 Your medical and nursing care 8 Our professional advisers and therapists 9 Will we charge for your care? 9 Who pays for St Luke s? 9 How to get to us 13 Route map 14 Caring for you as an in-patient 17 Who is caring for you? 18 What you should bring with you 18 Getting here and going home 19 When you arrive 19 Facts to reassure you 20 The in-patient centre 21 Accommodation 24 Beds 24 Bathrooms and toilets 24 Calling your nurses 24 Cleaning 24 Clinical receptionist 25 Companion volunteers 25 Computer access 25 Digital photo frames 25 Electrical equipment 25 Flowers and plants 26 Gardens 26 Gifts and gratuities 26 Hand-washing 26 Heating and lighting 26 Mail 26 Meals 27 Newspapers and books 27 Personal laundry 28 Personal property 28 Pets 28 Shop 28 Smoking 28 2 St Luke s The Patient s Handbook

3 Suggestions, compliments and complaints 29 Telephone calls 29 Television and radio 29 Your safety 30 Your medical and nursing care 31 Medical consultants 32 Other doctors 32 Nurses 33 Students 33 Resuscitation 33 Professional advice and therapies available to you 35 Occupational therapy 36 Oral history 36 Psychological therapy 37 Physiotherapy 37 Social workers 37 Spiritual care 38 Wellbeing services 38 Some ways our therapists might help you 40 Acupuncture 41 Anxiety management 41 Aromatherapy 41 Beauty therapy and hairdressing 42 Body image 42 Confidence building 42 Creative activities 42 Fatigue management 43 Massage 43 Reflexology 43 Reiki 43 Relaxation 43 What your visitors need to know 46 Visiting hours 47 Car parking 47 Children 47 Clinical receptionist 48 Hand-washing 48 Meals and drinks 48 Overnight accommodation 48 Smoking 49 Support for relatives and close friends 49 Telephone calls 49 St Luke s The Patient s Handbook 3

4 Transferring to our Therapies and Rehabilitation Centre or community specialist palliative care team 51 Notes 53 Working to high standards 58 Your personal information 61 Welcome to St Luke s Hospice 4 St Luke s The Patient s Handbook

5 Welcome from Judith Park, Deputy Chief Executive Welcome to our In Patient Centre at St Luke s Hospice. I lead the patient service teams here at the hospice. We ve put this Patient s Handbook together in the hope that you find it helpful and informative. You might have mixed feelings about being referred to St Luke s, but we are here to help and support you, your family, carers and friends, and your welfare is our top priority. We do everything in our power to comfort and inspire patients, adding quality to life at a time in their lives when every day matters more than ever. I hope this handbook will answer any questions you have about the hospice and your care, but if there is anything else you would like to know, please do ask. I would be very happy to meet with you personally just ask a member of staff to contact me. Kind regards, Judith Park Deputy Chief Executive St Luke s The Patient s Handbook 5

6 6 St Luke s The Patient s Handbook

7 What is St Luke s? St Luke s is Sheffield s only hospice. We are also a charity. The type of care we provide is called specialist palliative care, which is the care of people who have life limiting conditions. Our purpose is to improve the quality of life for local people, like you, with these types of physical conditions. We want you to live as normally as possible, for as long as possible. We ll help you to do this by providing you, your family and carers with high-quality care and support, compassion and respect. Peace of mind, contentment and relief from pain and other symptoms are central to everything we do for our patients, regardless of their personal circumstances. We work closely with the NHS, local care homes and council departments to provide and develop the full range of care and support services that people with life limiting conditions need and deserve. Who our patients are Most people associate us with caring for people with advanced cancer, but we also care for people with non-cancer conditions. Some have heart, lung or kidney disease, and others have neurological conditions, such as motor neurone disease. Our patients might be any age over eighteen, be from any part of Sheffield and belong to any religion, or none. Occasionally, we might also accept patients from other parts of the country, if they are at the end of their lives and have close family living in this area. Caring for individual needs We treat every patient as an individual. We will always tailor your care to your particular needs physical, psychological, social, spiritual, emotional, financial, or a mixture of them all. We make sure that we know your preferences and wishes, and that you know the choices open to you at all stages of your care. We will always protect your privacy and dignity and treat you with the utmost respect. St Luke s The Patient s Handbook 7

8 What we can provide for you In Patient Centre care if you become seriously ill or need immediate symptom management Therapies and Rehabilitation Centre care if you need access to specific therapies and professional services and choose to be a day patient or out-patient Advice and support for you and your family and carers from our Community Specialist Palliative Care Nursing Team if you are living at home On-going support and care for your family and close friends throughout your illness A range of traditional and complementary therapists and professional advisers. Throughout their time as patients of St Luke s, many people sample the whole range of services we offer. It s quite usual for a day patient, or for someone we support at home, to choose to be admitted as an in-patient from time to time. On the other hand, some people use only one of our services. What we can t provide for you Pre-booked respite stays in the In Patient Centre Long-term nursing care. However, we can give you information about local nursing homes that offer the type of respite and long-term nursing care to meet your particular needs. How you become a patient You would be referred to us by your GP, hospital nurse or consultant, or other health professional working in the community who feels that the type and range of care we offer is right for you. Whether or not we accept you as a patient depends on your particular case. Occasionally, you might have a short wait for a suitable bed, but if it becomes clear that you re in urgent need, we ll admit you as soon as we possibly can. Your medical and nursing care A team of specialist doctors and consultants provide our medical care. Our nurses are highly trained and experienced. All work to the highest standards. While you are a patient of ours, we are happy to discuss your care options with you, at any time. You could ask to see your medical records, if you wanted to, and we will answer any questions you may have about them. We respect your carers special roles and, with your permission, will always arrange for them to see medical or nursing staff if they, or we, think it necessary. 8 St Luke s The Patient s Handbook

9 Our professional advisers and therapists We have a number of traditional and complementary therapists and professional advisers who work hand-in-hand with our medical and nursing staff. You can rest assured that any therapy we give you would be suitable for your particular condition. Unfortunately, we cannot guarantee the availability of all specialist therapies and professional advice at all times. Will we charge for your care? No. Nor would we expect you to offer to pay. However, as a charity, we are always grateful for any contribution you feel is within your means. If you re a member of BUPA, Westfield, or another medical insurance scheme, please tell the nurses caring for you. They will arrange for someone from our social work department to help you to make a claim on our behalf. Who pays for St Luke s? St Luke s is an independent charity and our services are free. The NHS provides less than a third of our funding in , just 31 per cent. It costs 825 per hour to run St Luke s, 24 hours a day, 365 days a year. Of that 825, we have to raise 523 ourselves. So this year, and every year, we have to raise more than 4.5 million ourselves to carry on caring for our patients and their families. It s hard for a local charity to raise this much money, and it s getting harder. So we re extremely grateful for the support of thousands of people throughout Sheffield and beyond who make donations, fundraise and volunteer for us. St Luke s The Patient s Handbook 9

10 Why fundraising is crucial Without fundraising we wouldn t be able to pay our nurses and doctors, or heating and lighting or even for patients meals. The NHS pays these costs for some charities, but not for us. Without our supporters help, the hard fact is that St Luke s would have to close within months. And that wouldn t just mean losing our In Patient Centre. It would also spell the end for our community nursing service our specialist community nurses would no longer be able to carry on caring for more than 1,000 patients in their own homes every year. Every year our Therapies and Rehabilitation Centre gives 400 patients with life-limiting illnesses more independence and better quality of life but that would go too. That s why all gifts, large or small, are so crucial. They add up to vital help that we simply couldn t do without. For example: 5,000 pays for a fortnight s complete nursing care for an in-patient 1,500 buys a specialist bed and mattress 530 pays for 24 hours complete care for an in-patient 100 buys a specialist pressure relief cushion 22 pays for an hour s complete care for an in-patient. 10 St Luke s The Patient s Handbook

11 Could I help? Yes, if you d like to, you certainly could. More than half of all St Luke s supporters have personal experience of the hospice, either as patients themselves or as the relatives or friends of people St Luke s has cared for. They understand better than anyone the value of what we do to improve quality of life for patients and families and they want to help us carry on doing it. We also know that a quarter of all the people who support us do so because a friend or family member suggested it. So, please tell your own family and friends about what we do and what it means to you, and encourage them to think about supporting us. How you can help There are lots of ways that you and family and friends can help here are a few: Make regular or one-off donations to the hospice Make a gift in a Will Donate house sale fees (via estate agents Saxton Mee) Fundraise for us or get sponsored to take part in a run or other event Play our Play Local lottery Join in our fundraising events Shop at one of our eleven charity shops or donate goods to sell Ask your employer, school or college to choose us as their nominated charity to support Volunteer for St Luke s. We never have enough volunteers to help with supermarket collections and bag packing, for example, and there are many other volunteer roles at the hospice and in our shops too. If you d like to help, please ask to speak to Fran, Susie or any of the St Luke s Fundraising team. They d be very happy to come and have a chat with you. St Luke s The Patient s Handbook 11

12 12 St Luke s The Patient s Handbook Pic

13 How to get to us Adding quality to life St Luke s The Patient s Handbook 13

14 14 St Luke s The Patient s Handbook

15 St Luke s is approximately three miles south of Sheffield city centre. Our location is marked on the map opposite. People travelling by bus should take the 70 Dore bus from the bus-stop opposite the cathedral on Church Street. They should get off at the stop on Ecclesall Road South, after Parkhead. Here, there is a pathway to Little Common Lane, signposted to St Luke s. The bus journey takes about 25 minutes. St Luke s The Patient s Handbook 15

16 16 St Luke s The Patient s Handbook

17 Caring for you as an in-patient Adding quality to life St Luke s The Patient s Handbook 17

18 Who is caring for you? Your consultant is Your nurses are You or any member of staff may write in the Notes pages at the back of this section (pages 53 to 56) as a reminder of information you might need later or advice given you. What you should bring with you It s important that we know which medicines you are taking at the time you come into St Luke s, so please bring them with you and hand them to your nurse on arrival. Please remember to do this because if you take any medication without our knowledge this could cause problems if we prescribe you something else as well. When your stay is over, we ll tell your GP of any changes we have made to your medication. We ll also supply you with medicines to take home. If a district nurse has been visiting you regularly at home, please bring his or her notes for us to read. The information they contain will be very useful to us. You ll need night clothes and day clothes and some well-fitting shoes or slippers. For safety, please don t bring slippers that are open at the back. You ll also need your personal toiletries. Please don t bring lots of clothes and belongings because we have limited wardrobe and storage space. We encourage you to bring photographs of your family, friends and pets and other special mementoes. If you have digital photographs on a memory card then you can borrow one of our digital photo frames to display them see page St Luke s The Patient s Handbook

19 Getting here and going home If you re coming for a stay at the hospice and you can t arrange your own transport, or you are too poorly to do so, your GP will book an ambulance or hospital car to bring you here. We can arrange transport home at the end of your stay, if you would like us to. If a member of your family or a friend brings you or takes you home, there are directions to the hospice and a map on page 14 and 15 which will help them. When you arrive When you first arrive at St Luke s everything will be new and unfamiliar. We want you to feel comfortable and at home in your new surroundings as quickly as possible. The more we know about you, the more relaxing your stay will be so, soon after you arrive, a doctor or nurse will ask you for basic information about yourself and your treatment so far. He or she will ask about your symptoms and illness, strong likes and dislikes, beliefs, personal circumstances, family, if you follow a special diet or if you need any practical help at home. He or she will also tell you who will look after you from now on. The staff looking after our 20 in-patients include the consultant who is responsible for you during your stay with us, and a multi-professional team. The team of nursing and healthcare assistants is led by the In Patient Centre Manager. If you want anything explaining further, or if you have any worries or concerns at any time, please tell the nurses caring for you. St Luke s The Patient s Handbook 19

20 Facts to reassure you We know, from talking to our patients, that there are some facts about St Luke s that might be particularly helpful to you. Our highly-qualified doctors, nurses and therapists have extensive knowledge and experience of caring for people with illnesses like yours. We ll plan all your care with your particular needs and preferences in mind and we ll involve your close relatives in helping you to wash, feed, bathe and dress, if that is what you and they want. Visitors are welcome at any time of the day or night and if you would like your relatives to stay overnight by your bedside, we can arrange this. If you become particularly ill and your relatives couldn t be there, one of the nurses or one of the hospice s companion volunteers would sit with you whenever they could. We re here to support and help your relatives during all stages of your illness and in all circumstances. You may need only a short time as an in-patient to help you through a difficult period, then you ll go home. If, however, your symptoms change and you need a longer stay, we ll discuss this with you. We don t take patients on a long-term basis. We won t limit you to only one stay as an in-patient. If you need to be re-admitted, then this can be arranged even if you have only recently gone home! When you go home, our community team will give your GP whatever support they can and we ll discuss with you any help or equipment which would make things easier at home. You re always in control of your own treatment. We offer advice and choices, but it s you who decides, in consultation with our professional staff. While caring for you, we ll always respect your personal beliefs, religion and culture. 20 St Luke s The Patient s Handbook

21 Getting settled in The In Patient Centre Adding quality to life St Luke s The Patient s Handbook 21

22 22 St Luke s The Patient s Handbook

23 St Luke s The Patient s Handbook 23

24 Accommodation Our In Patient Centre comprises 14 single en-suite rooms designed to accommodate you and your family, and two spacious triple rooms, each with an en-suite wet room and provision for relatives to stay overnight. Each single room has a view onto part of our gardens, along with a Juliet balcony or patio area, and each shared room has a bright and airy conservatory. Beds Our beds are specially designed to adapt to differing needs. They can be controlled electronically, either by you or your nurses, and some have pressure-relieving mattresses if you need constant bed rest. Your bed space has its own curtains to provide privacy when you need it. At the end of your bed are three bed charts. One says which medicines you are taking, one gives details of any special diet you are on and one advises how you should be moved or handled and if the person moving or handling you needs special equipment to do this. Other charts may be added to help staff manage your treatment. Bathrooms and toilets Each room has an en-suite wet room with a shower, sink and toilet. We also have a spa room with a specially-designed bath with a Jacuzzi function. The bath lowers for easy access, and we have a special hoist that can help you into the bath if you are not able to get in yourself. You can lie back and let the water jets massage your body while you listen to relaxing music. You can also have some complementary therapy treatments while you relax in the bath. Calling your nurses The nurses looking after you will introduce themselves to you. They ll be on hand for you 24 hours of the day. There s a call button by your bed, if you need their help for any reason. The en-suite bathrooms also have pull cords which you can reach easily. When you press a call button or pull a cord, this activates a pager which the nurses looking after you carry at all times. In addition, two television screens displayed prominently around the In Patient Centre alert all other nurses that you need help. This system ensures that noise is kept to a minimum for you and other patients and that someone will always respond to your call. Instructions for operating the nurse call system are kept in your room information folder. Cleaning You ll see our housekeeping staff throughout the day, every day, as they thoroughly clean all areas of the building. Their work is of an exceptionally high standard. 24 St Luke s The Patient s Handbook

25 Clinical receptionist The clinical receptionist located at the entrance to the In Patient Centre can help you to find any member of staff you may want to talk to, take messages, or give directions around the building. Companion volunteers You will see our companion volunteers on the In Patient Centre as they spend time with patients. They can chat with or read to you, play board games with you, accompany you to the garden or the creative activities room, or just sit quietly with you. If you would like to talk to one of the volunteers, please ask a member of staff. Computer access We have ipad tablet computers that you can borrow. They can be used to access the Internet or to play games. Just ask one of the nurses if you would like to borrow one. Instructions on how to use the ipads are in your room information folder, or we can arrange for a member of staff to show you how to use one. When you leave the Centre we make sure that we reset the ipad so that none of your personal information is kept on it. If you have your own tablet computer or laptop you can use our Wifi connection to connect to the internet. Instructions are in your room information folder, or just ask one of the nurses. We also have a computer with access to the internet and a webcam in our Therapies and Rehabilitation Centre. Just ask one of the nurses if you would like to use it. Digital photo frames We have photo frames that you can borrow if you have photographs in digital format. You or your relatives can bring in photographs on an SD memory card, or if you have a different format card then we can transfer your photos to one of our own SD cards. When you leave the Centre we make sure that we securely delete any photographs on our memory cards before they are given to another patient. Just ask one of the nurses if you would like to borrow a digital photo frame. There are instructions on how to use the frame in your room information folder, or we can arrange for a member of staff to give you a demonstration. Electrical equipment Before you use any electrical equipment belonging to you such as a radio or hairdryer please tell your nurse, so that we can first test it for safety. St Luke s The Patient s Handbook 25

26 Flowers and plants The volunteers within the Housekeeping Department will arrange your flowers, look after them and keep them fresh. If you would like any flowers please let the Housekeeping Department know. If you have an allergy to plants, or the scents distress you, please tell your nurse. Gardens Please visit our lovely landscaped gardens whenever you can, either with a nurse or with one of your visitors. Our patients lift allows easy access, even if you can t leave your bed. Just remember to tell one of your nurses when you leave the In Patient Centre so that he or she can give you a nurse call fob for you to use in case you need help while outside. Gifts and gratuities If you ever want to give staff or volunteers something to express your thanks, please give only flowers, confectionery or fruit as they are bound by professional regulations not to accept any personal gift, large or small. The donations box in the foyer, next to reception, provides the opportunity for anyone to donate money as a contribution to meeting the hospice s running costs. Hand-washing We do everything we can to minimise the spread of bacteria which may cause infection. You ll see many alcohol gel dispensers around the building and in your room. Please ask your visitors to use them to wash their hands on arrival and before leaving the In Patient Centre. Heating and lighting We try to make the hospice as comfortable as possible for you. There are adjustable, heating and cooling systems and lighting sources in every room. A nurse will show you how these work when you arrive, and there are also written instructions in your room information folder. Mail You can receive letters and parcels at the hospice. The postal address is In Patient Centre, St Luke s Hospice, Little Common Lane, Sheffield, S11 9NE. If you want to post anything, you can buy stamps from the reception. The Royal Mail van arrives at 6.00pm, so make sure you give anything you want to post to your nurses well before that time. 26 St Luke s The Patient s Handbook

27 Meals Our catering team provides freshly cooked meals and snacks for all tastes and diets, including those dictated by religion and medical conditions such as diabetes, allergies and gluten intolerance. We re expert at producing food which can be easily swallowed or digested and we re happy to talk to you to find out exactly what you can eat, what you want to eat and when you want to eat it. When you arrive, make sure you tell one of your nurses your particular likes and dislikes, or about any particular dietary needs you may have. He or she can arrange for a chef to visit you to discuss those needs in detail and to make sure we meet them. Our hospitality team will serve all your meals. The hospitality team provide a meals service from 7am to 8pm. Drinks are served throughout the day and although most patients are pleased to have breakfast, lunch and dinner at the conventional times below, the hospitality team are also happy to serve you at other times of the day if you prefer. 8.00am 12.30pm 5.30pm 7.00pm Breakfast and morning tea or coffee Lunch Dinner Drinks Please ask your relatives and visitors to tell a member of the nursing team if they bring in any food or drink for you. Alcohol Generally, we re happy for you to drink alcohol in moderation as it can be good for relaxation, appetite and sleep. However, you should check with your doctor or nurse first as it may affect your medication. Newspapers and books We have a variety of newspapers delivered to the hospice each day, which you are welcome to borrow. We have a library of talking books on CD that you can borrow there s a list of these in your room information folder. We also have a range of books on local history. Just ask one of the nurses if you would like to borrow a CD or book. St Luke s The Patient s Handbook 27

28 Personal laundry We assume that a member of your family or carers will wash and iron your clothes and suggest that you keep some polythene bags in your locker for storing all the things waiting to be collected. If you have no-one to wash your clothes, please tell one of your nurses. He or she will ask our laundry to wash them for you, but please make sure that each item is clearly and permanently marked. Laundry staff can t hand-wash delicate fabrics, nor can they take responsibility for any damage to your clothes. Personal property You have a lockable bedside table in your room for your essential personal belongings. You also have a small hanging wardrobe in your room big enough to take the clothes you need while staying with us. Inside the wardrobe there is a safe for any valuables. Please keep only a small sum of money and essential valuables in your safe. Please note that we can t accept any responsibility for loss or damage to your personal possessions while you are here. Pets Your pets are welcome to visit. Please arrange this with your nurse. Shop You can buy St Luke s merchandise, cards, writing materials and small gifts from reception. Smoking There is a room in the Therapies and Rehabilitation Centre where you can smoke. If you want to use the patients smoking room it s very important that you ask one of the nurses looking after you before you leave the In Patient Centre. He or she will give you a nurse call fob for you to use in case you need help while you are alone. Your visitors can go with you, although only you can smoke while in that room. If your visitors want to smoke, they will have to go off site as, by law, we must provide a totally smoke-free environment for people other than patients. There is a smoking shelter for any visitors who wish to smoke a member of the reception team will be happy to direct visitors to the shelter. 28 St Luke s The Patient s Handbook

29 Suggestions, compliments and complaints If you want to suggest a change in our procedures or express concern about some aspect of your care, please talk to a senior member of our nursing staff. If you prefer, you can fill in a leaflet called, We welcome your views, to compliment, comment or complain about our services. These are easily available on the In Patient Centre, from reception and from our Therapies and Rehabilitation Centre. You could also talk to our service user co-ordinator, whose job it is to listen to suggestions for change and improvement from patients and their carers and families. Reception staff or one of the nurses would be pleased to put you in touch with the co-ordinator if you ask. If you want to see a copy of our complaints procedure, please ask any member of staff. They can arrange for you to have your own copy if you want one. If you ever feel that a problem is not resolved to your satisfaction, then you may want to contact the Care Quality Commission, Citygate, Gallowgate, Newcastle upon Tyne, NE1 4PA. Telephone calls You have your own cordless telephone in your room or by your bedside. We don t charge for you to make or receive calls. You are also welcome to use your own mobile telephone. Television and radio You have a flat screen television in your room, or opposite your bed if you are in a shared room. There is no charge to use the television. Instructions on how to use it are provided in your room information folder. There s also a large flat screen television in the lounge area of the Therapies and Rehabilitation Centre, which you can watch with your family in the evenings and at weekends, when day patients have gone home. Digital radio stations are available through your television. St Luke s The Patient s Handbook 29

30 Your safety Falls account for most patient accidents, so please call a nurse if you have been advised to do so or if you feel weak or unsteady at any time. Never try to walk without supervision if you are unsteady. Each of our single rooms has a balcony or patio with windows that can be opened. Depending on your needs, staff will decide whether this facility will be available to you. If children visit you please take extra care to supervise them when they are near the balcony or patio area. All staff have regular fire training and know what to do if a fire breaks out. In such a situation, your nurses would ensure your safety, and the fire brigade would arrive within minutes. We test the fire alarms at 2.00pm every Wednesday so don t worry when you hear the alarm siren. It lasts only a few seconds. 30 St Luke s The Patient s Handbook

31 Your medical and nursing care Your medical and nursing care Adding quality to life St Luke s The Patient s Handbook 31

32 Your medical and nursing care is planned and provided by a highly-qualified, specialist team of medical consultants, specialist registrars, doctors and nurses who are expert in the control of pain and other symptoms associated with conditions like yours. These doctors and nurses meet regularly with various professional therapists to discuss how St Luke s can best help you. You may hear staff call this group the multidisciplinary team or MDT for short. Any doctor or nurse responsible for your care will be happy to discuss your treatment and medication with you at any time. You can also ask in writing to see your medical records, if you want to, and your consultant or other doctors will always answer any questions you may have about anything written in them. Medical consultants We have two consultants and you will be under the care of one of them. Each week, every consultant has a ward round when he or she will come and talk to you, in detail, about your care, how you are feeling, the medicines you are taking and if you have any problems what might make you feel better. It s usual for your consultant to include the nurses, doctors and pharmacy staff caring for you on his or her ward round. We respect your carers special roles and, with your permission, we would always arrange for them to talk with medical staff if they, or we, thought it necessary. Other doctors We have a range of other doctors working with our consultants, and under their supervision. These include registrars, who are doctors training to become consultants, and less senior doctors who are training to be GPs. 32 St Luke s The Patient s Handbook

33 Nurses We have 20 patients in our In Patient Centre. An In Patient Centre Manager leads the In Patient Centre and will introduce themselves to you soon after you arrive. They have the responsibility for the entire In Patient Centre. The qualified nurses report to the In Patient Centre Manager and supervise the healthcare assistants. The In Patient Centre Manager makes sure that there are always enough nurses on duty at all times of the day and night. The uniform for each type of nurse is different. This may help you to know who is who: The In Patient Centre Manager wears a navy uniform with white spots The In Patient Centre Sister wears a navy uniform with white trims Registered nurses wear a mid-blue uniform with white trims Healthcare assistants wear light blue with white trims Complementary therapists wear lilac tunics with white trims and navy blue trousers Occupational therapists and assistants wear a dark green tunic and navy blue trousers Hairdressers wear lilac tunics with white trims and navy blue trousers Physiotherapists wear white tunics with navy blue trims and navy blue trousers. Registered nurses and healthcare assistants have all had extensive training in all aspects of caring for patients with needs such as yours. Students St Luke s is a teaching hospice and we have students from a range of disciplines working in the In Patient Centre. All students are supervised. If you don t want the students to be involved in your care then please let us know. Resuscitation We feel that trying to resuscitate a patient to reverse a sudden, unexpected collapse is not often appropriate for our patients, but we will discuss the matter with you so that we can record your wishes. This means that, if you have such a collapse, we will know exactly what you want us to do. If you would like a copy of our full resuscitation policy, please ask a member of the nursing staff. St Luke s The Patient s Handbook 33

34 34 St Luke s The Patient s Handbook

35 Professional advice and therapies available to you Professional advice and therapies available to you Adding quality to life St Luke s The Patient s Handbook 35

36 We have many ways to help you cope with practical, emotional, psychological, physical, financial and spiritual issues. Tell your nurse if you think you need any specialist therapy or professional service listed below and please say why, so that we make sure you see the person best suited to your needs. Occupational therapy Our occupational therapy team includes fully qualified and registered occupational therapists working alongside an experienced assistant. Our occupational therapists can help you maintain your independence and normal routines, and build your confidence and self-esteem, by suggesting solutions to practical problems in your everyday life, such as new ways to wash, dress, shop, cook and spend your leisure time. They can also provide practical help for any anxiety, fatigue or breathlessness. They assess your needs, identify ways you might manage more easily, and advise you about equipment which will help you or special adaptations you could make to your home. They can also provide you with information about services which can help you to make those changes. If required, a home assessment visit may be suggested. The occupational therapy team also plans and provides the hospice s creative activities. Oral history Our oral history service offers patients the opportunity to make an audio recording of their life story. Many people find telling their life story interesting and are pleased to have had the opportunity to place their memories on record. A trained member of staff or volunteer will guide you through one or more interviews. The recording is then transferred to CD and you will be given a copy of the recording. We have a CD player and headphones available for you to use to listen to the recording. You may also request extra copies of the recording for your family and friends if they would like them. 36 St Luke s The Patient s Handbook

37 Psychological therapy Clinical psychologists are trained to work with people experiencing a range of emotional and psychological difficulties or distress. Ours have particular experience of working with people coping with serious physical illnesses. The difficulties such people face might include feeling anxious, feeling low or depressed, problems in personal and sexual relationships, personal loss, bereavement, adjusting to changed circumstances, coping with the physical effect of illness, coming to terms with an uncertain future, and dealing with their fears. Our psychologists work not only with patients, but also with their families and others close to them. Usually, a therapist meets with a patient for one or more appointments, and works with them to understand his or her difficulties or sources of distress, their causes and possible ways forward. You can see a clinical psychologist on your own, with your partner or with members of your family. Physiotherapy Our physiotherapy team includes fully qualified registered physiotherapists working alongside experienced assistants. Our physiotherapists are very experienced in helping patients with physical problems and can help you to maintain your independence by teaching you exercises to build up your muscle and improve your flexibility. They can provide you with walking aids, such as crutches, walking frames or other items of equipment if you need them. Physiotherapists can give advice and offer practical help for symptoms such as anxiety, fatigue, pain, nausea, breathlessness and lymphoedema (fluid retention and swelling). They also provide specialist treatments, including acupuncture, for a variety of other conditions. Social workers Our social work team includes fully qualified and registered social workers working alongside an experienced assistant. All work closely with our doctors, nurses and therapists. They can give practical and emotional support to you, your relatives, carers and close friends, especially when complex and stressful decisions must be made. They can also help you to talk to each other if this is difficult. They liaise with Sheffield Council s neighbourhood and community services and housing department, local hospitals, housing associations and other organisations providing services to St Luke s patients, relatives and carers. They can communicate on your behalf with the local authority or NHS Sheffield to help them assess your needs for care services at home or in a residential setting. They can advise you on financial matters, including benefits, pensions and debt management. St Luke s The Patient s Handbook 37

38 They can provide information and advise you who to contact about claims for attendance allowance, transport costs, disability living allowance and other benefits. They can tell you about grants for help with specific needs, if you are eligible, and where you can get legal advice if you need it. They also give practical and personal support to people and their families towards the end of someone s life. Sometimes this involves working with children and young people who are dealing with painful emotions and thoughts of change as they face losing someone they love. Spiritual care Our chaplain, together with a team of volunteers, supports people of all faiths and those who have none, and you will often see them chatting casually with patients, relatives, friends and carers. We have a chapel, off the hospice s main foyer, where we hold regular services on Thursdays and Sundays. If you would like to attend, your nurse will tell you what time it starts and will be happy to take you there. The tone and content of each service is always guided by the needs of the people attending. Our patients are adults of all ages and at various stages in their lives, so our chaplain responds to whatever kind of service they would like: it is not unusual for our chapel to be a place for baptisms, to bless marriages and for other times of great personal joy involving whole families. But the chapel is also ideal if you need a place for quiet contemplation or prayer, or just some space to yourself. We have copies of the main religious texts in the chapel. If we do not have what you need, please ask our chaplain. If you are not in regular contact with your own religious leader but would like to be, our chaplain would be happy to make contact on your behalf. Wellbeing services We have a team of qualified employed and volunteer therapists dedicated to giving you an enhanced sense of wellbeing. The one-to-one treatments offered by our complementary therapists, beauty therapists and hairdresser will make you feel relaxed, good about yourself, and ready to face the world. Some treatments even alleviate pain and stress. All services are tailor-made to your needs and allow you as much choice as possible while always ensuring that the treatments you choose are safe and appropriate to your condition and medical treatment. You can choose to have just one of our beauty therapies or relaxation treatments, or you can combine them with a complementary therapy if you want to, assuming that the therapy you choose is suitable for your condition. 38 St Luke s The Patient s Handbook

39 St Luke s The Patient s Handbook 39

40 Some ways our therapists might help you Some ways our therapists might help you Adding quality to life 40 St Luke s The Patient s Handbook

41 The staff caring for you will advise which professional service can help you, and which therapies or treatments best suit your particular needs, medical condition and the medication you are taking. Please trust their recommendations. You cannot insist on having a therapy or treatment that is unsuitable for you. Acupuncture Acupuncture, the ancient art of healing, has been practised in China for over 2000 years. It involves placing sterile needles in the skin to improve both painful and non-painful conditions. Practitioners believe that illness, disease, health and wellbeing are dependent on the harmonious and balanced flow of vital energy (chi) through us. The therapist places needles along points on the body where, it is believed, they can restore that flow of energy. The needles are safe and painless throughout the treatment. Studies show that acupuncture releases natural chemicals in the body which can relax muscles, and relieve breathlessness and nausea, as well as pain. Anxiety management It s not unusual for our patients to feel anxious in certain situations, such as during periods when they are waiting for appointments with their consultant or the results of medical tests. They may even feel extremely stressed when doing mundane things such as shopping or leaving the house. Sometimes these feelings are overwhelming. They can also bring on panic attacks. If you have difficulty handling particular situations, whatever they are, we can explore your feelings with you and show you how to manage your anxiety in a variety of ways, starting with recognising its early signs and teaching you how to regain a feeling of calm and composure, how to relax, and how to lessen fear. Aromatherapy The most effective and popular method of delivering aromatherapy is by gentle massage using essential oils derived from plants. Before having the massage, you can smell a selection of oils, all suitable for your condition, and discuss your preference with the aromatherapist, who will guide and advise you. Alternatively, you can choose from a variety of pre-blended oils. Many areas of the body can benefit from aromatherapy massage. You can also benefit from aromatherapy through inhalation, and we can usually arrange for you to borrow a vaporiser to use in your room. Aromatherapy can relieve tension and emotional distress, promote relaxation, calm the mind and ease anxiety. It can also help with pain and nausea and aid sleep. We provide aromatherapy treatments in our complementary therapy studio. St Luke s The Patient s Handbook 41

42 Beauty therapy and hairdressing You can enjoy beauty therapy in the form of facials, manicures and pedicures, make-up application, eyebrow shaping, eyebrow and eyelash tinting and hair removal. We can provide these treatments in the beauty salon or in our complementary therapy room. Some treatments can be carried out at your bedside. We offer a variety of treatments in the salon, including cut and blow dry, trims, perms, beard and moustache trimming, wig trimming and hair colouring. If you are not able to get out of bed we can move your bed into the salon, and some treatments can be carried out at your bedside. You may make a donation towards the cost of your hairdressing or beauty treatment if you wish. Body image Sometimes serious illness causes changes in a person s appearance which are difficult for him or her to accept. If the physical effect of illness has changed the way you look and feel about yourself and this is distressing you, we have ways to help. Confidence building Having a serious illness usually means that you can t do what you used to do, or live like you want to live. This can deal a hefty blow to anyone s confidence and self-image. Confidence and self-image suffers if independence lessens. If you are having this problem, we can help you rebuild your confidence and regain feelings of control which, in turn, give you a positive view of yourself. We do this, usually, by providing practical solutions to practical problems, exploring your feelings with you and teaching you to reassess your goals and to look at your situation and yourself with fresh eyes, and to concentrate on your successes. Creative activities Creative activity gives you an opportunity to produce a piece of work, with guidance and support where necessary. It can help to improve your self-esteem and confidence along with your stamina, strength and concentration. Creative work can also give you a positive, rewarding and enjoyable experience, opening up new horizons and discovering skills you never knew you had, or honing old ones you had almost forgotten! Our occupational therapy creative activities team offers the opportunity for you to work across a range of media in creating many types of art and craft works. Activities include drawing and painting, jewellery-making, collage, decoupage, painting on silk, stencilling, sewing, embroidery, gardening and seasonal crafts such as making garlands, displays and cards. The team also arranges board games, word games and quizzes. 42 St Luke s The Patient s Handbook

43 Fatigue management If you often experience breathlessness or acute tiredness and fatigue, we can probably help you. We do this by teaching you to prioritise differently, to pace yourself differently, to use different equipment and to take a fresh approach to doing routine activities, such as getting dressed, cooking, cleaning and socialising. If we feel you need additional help around the home, we can advise you who could provide this, referring you to the local authority s care service, if that is your choice. Massage You can experience gentle therapeutic massage to various parts of the body, with or without clothing, to help you to relax, ease stress and tension and enhance your sense of wellbeing. We offer back massage, hand and arm massage, foot and leg massage and abdominal massage, and it can relieve stiffness, cramping, pain, swelling in the limbs, constipation, stress, anxiety and sleep problems. We can use specially mixed aromatherapy oil (see page 41) or plain oil. You can have your massage anywhere you feel the most comfortable, either in your room or in our complementary therapy studio. Reflexology Reflexology is a specialised form of foot massage. The theory behind it is that pressure on certain parts of the feet can stimulate balance and healing in various systems and parts of the body. Many people say that simple foot massage can relax them and relieve tension and pain. We can give you reflexology anywhere you feel the most comfortable, either in your room or in our complementary therapy studio. Reiki Reiki is performed while you are fully clothed. The therapist s hands are held slightly above your body, and it is said to direct the natural energies around you in a simple and calm way and help to recreate balance between your mind, body and emotions. Reiki is not faith healing and those who try it need not have any particular religious beliefs. Patients say that reiki relaxes them and gives emotional and physical release from tension, anxiety and pain, helping them to cope better with their illnesses. Relaxation We can explore why you have difficulty relaxing and then teach you techniques to help you relax and ease anxiety and stress. You can use these whenever you want, to aid rest or sleep. These techniques involve gentle breathing and, usually, guided imagery which uses your imagination to take you to different places in your mind or visualisation where you see yourself in a positive light, from a new or different perspective. St Luke s The Patient s Handbook 43

44 44 St Luke s The Patient s Handbook

45 St Luke s The Patient s Handbook 45

46 What your your visitors need visitors know need to know Adding quality to life 46 St Luke s The Patient s Handbook

47 Please tell us if you have any special requests relating to your visitors. For instance, some patients who feel very poorly ask us to restrict the number of people coming to see them. Visiting hours We welcome relatives and friends to visit you at any time, on any day of the week and throughout the year, including over holidays and festivals. Anyone wanting to make a very early, or late, visit should first check with the nurses caring for you before leaving home. Your visitors should always report to reception before they visit your room. For everyone s safety we lock both the main doors and the doors to the In Patient Centre from 7.25 in the evening until 7 o clock in the morning. Visitors leaving the Centre between these times will need to ask one of the nursing staff to show them out. If your visitors arrive between these times, they will need to use the two-way intercom outside to say who they are, and give your name, before staff will let them in. If, after we have automatically unlocked the door so that your visitors can enter or leave the building, they see a stranger enter without telling staff who they are and why they are there, then your visitors must tell a member of staff immediately. Friends and family can phone our main number at any time for news about you. Car parking All the parking places at the front of our building are reserved for patients visitors and they are free of charge to use. We also have a number of three hour short stay spaces available. There is on-road parking nearby on Ecclesall Road South, which is linked to Little Common Lane by a short public footpath. The hospice site is at the centre of a residential area, so we ask that your visitors always park safely and considerately, taking care to avoid blocking access to our neighbours private driveways. Children Children are always welcome at St Luke s. They can spend time in your room, and a box of toys for their use is available if you ask. If you are in a shared room, children can play quietly in the conservatory. But your visitors must always supervise children playing in this area as it is close to patients who may be very ill. Your visitors must also be extra vigilant when children are near the balconies and patios. St Luke s The Patient s Handbook 47

48 Clinical receptionist The clinical receptionist is located at the entrance to the In Patient Centre. She or he can help your visitors to find any member of staff they may want to talk to, take messages, or give directions around the building. Hand-washing We do everything we can to minimise the spread of bacteria which may cause infection and you will see many alcohol gel dispensers around the building and in your room. Please ask your visitors to use these gel dispensers to wash their hands on arrival and before leaving the In Patient Centre. Meals and drinks Your visitors can use our dining room 24 hours a day. Here, they can buy hot meals, salads or lighter meals such as soups and sandwiches. The menu is varied and changes daily. There is always a choice of dessert and a range of hot and cold drinks. All of our food is fresh, seasonal and homemade by our expert chefs. Our hospitality team provides a lunch service from 11.30am to 2.00pm. Outside these hours there is a fully-stocked carousel offering snacks and drinks. Evening meals are served from 5.30pm to 6.30pm and can be pre-ordered from our hospitality team or reception before 5pm. Hot drinks are available from reception and the dining room 24 hours a day. Please ask your relatives and visitors to tell a member of the nursing team if they bring in any food or drink for you. Overnight accommodation There is a sofa bed and bedding in each of the single rooms, which your relatives can use. We also have an overnight room, or relatives of patients in the shared rooms can stay overnight in the conservatory. We have a list of local B&Bs which your visitors may find useful. They should ask at reception. 48 St Luke s The Patient s Handbook

49 Smoking Patients may smoke in the patients smoking room in the Therapies and Rehabilitation Centre but, by law, no-one else can smoke within the hospice buildings and grounds. This means that your visitors can go with you to the patients smoking room but if they want to smoke themselves, they must go off site. There is a smoking shelter for any visitors who wish to smoke a member of the reception team will be happy to direct visitors to the shelter. Support for your relatives and close friends In addition to caring for you, we care also for your family and close friends. If any of them is having difficulties of any kind, please ask him or her to talk to us. Initially, he or she should speak to one of the nurses or the clinical receptionist. Telephone calls You can call your friends and family by using the cordless telephone in your room or by your bed. We do not charge you for using this phone. Instructions on how to use the telephone are in your room information folder. Your visitors are also welcome to use this telephone and if they wish to make a donation they can do so using the donations box in the foyer, next to main reception. Your visitors are welcome to use their mobile phones in the Centre, but if they do so in the communal areas, including the shared rooms, please ask them to be considerate, as other patients may be very poorly and need a peaceful environment. St Luke s The Patient s Handbook 49

50 50 St Luke s The Patient s Handbook

51 Transferring to our Therapies and Rehabilitation Centre or Community Specialist Palliative Care team Transferring to our Therapies and Rehabilitation Centre or Community Specialist Palliative Care team Adding quality to life St Luke s The Patient s Handbook 51

52 When your stay finishes, we may suggest that you transfer to our Community Specialist Palliative Care team, who can support and advise you at home. Alternatively, we may suggest that you would benefit from attending the hospice for a few weeks for a programme of therapy and rehabilitation as a day patient, usually on one day each week. 52 St Luke s The Patient s Handbook

53 SPACE FOR NOTES AND ADVICE Notes Adding quality to life St Luke s The Patient s Handbook 53

54 Notes 54 St Luke s The Patient s Handbook

55 Notes St Luke s The Patient s Handbook 55

56 Notes 56 St Luke s The Patient s Handbook

57 St Luke s The Patient s Handbook 57

58 Working to high standards Working to high standards 58 St Luke s The Patient s Handbook

59 Our aim is to provide the highest standard of care. However, if ever you want to suggest a change or express concern about some aspect of your care, please talk to the doctors and nurses caring for you or our service user co-ordinator, whose job it is to listen to suggestions for change and improvement from patients and their carers and families. We also have a leaflet called What do you think about St Luke s? which you can use to compliment, comment or complain about our services. It is available from reception. The form is also available on the St Luke s website at If you feel your concerns are very serious and want to make a formal complaint, we can provide you with a copy of our complaints procedure so that you know how to do this. If you ever feel that a problem has not been resolved to your satisfaction after you have complained formally to us you may want to contact the Care Quality Commission, Citygate, Gallowgate, Newcastle upon Tyne, NE1 4PA. The Care Standards Regulations expect all hospices to have a Statement of Purpose. This statement includes information on the Registered Manager (Deputy Chief Executive) and the Responsible Person (Chief Executive) and their qualifications and experience. The statement covers descriptions of the hospice s aims and objectives, the number, qualifications and experience of the staff, the organisational structure, the treatments offered. It also covers the arrangements for consultation with patients and their carers, for respecting privacy and dignity and arrangements for dealing with complaints. At St Luke s we feel this information should be made available in our patient handbook which will act as our statement of purpose. Due to the changing nature of some of this information such as the organisational structure and registered individuals these details will be kept with the Chief Executive. If you would like a copy please contact the hospice on St Luke s The Patient s Handbook 59

60 60 St Luke s The Patient s Handbook

61 Your personal information Your personal information Adding quality to life St Luke s The Patient s Handbook 61

62 When you become a patient at St Luke s, we ask you to give us information about yourself, to help us decide, with you, what treatment and care is best for you. This may include details of your next of kin, your health conditions, any treatment or medication you have had, and information about contact with other health professionals. We keep a record of this information either written down or held on computer and it is known as your medical record. We take great care to make sure your information remains confidential. We may need to share information with other health professionals, but only if they have a genuine need to know, and even then we would only share the minimum amount of information necessary. We may also collect information about our patients for statistical purposes, but you will not be able to be identified from this information. Please also note that as part of our obligations towards the Care Quality Commission, we may need to provide the Commission with names and addresses of patients who use our service, for monitoring purposes. Please let us know if you do not want us to disclose your details in this way. In most cases you have the right to see your medical records. You also have a right to complain if you are not happy with the way we have collected, used or shared your information. 62 St Luke s The Patient s Handbook

63 St Luke s The Patient s Handbook 63