The Patient’s Handbook All you need to know about being a St Luke’s patient Adding quality to life 1 How to use this publication You need read only the pages which interest you at the moment, but please keep this book handy so that you can refer to it if you use other parts of our service in the future. The white pages contain general information about the Hospice, the way it works, and the type and level of care you can expect from us. The green pages contain information you need if you are a day patient. The blue pages contain information you need if you are an in-patient. The yellow pages contain information you need if you live at home and our community specialist palliative care nursing team is involved in your care. At the back of each coloured section you’ll find some lined pages. You, or members of our staff, can use these to note anything you need to know or remember. Your name 2 3 Contents Welcome to St Luke’s Hospice 4 – What is St Luke’s? 4 – Who our patients are 5 – Caring for individual needs 5 – What we can provide for you 6 – How you become a patient 7 – Your medical and nursing care 7 – Our professional advisers and therapists 8 – How we are funded – and how we raise funds 8 – Will we charge for your care? 9 – Having your say 9 St Luke’s in the Sheffield community 11 – Bereavement service 11 – Education department 12 – Volunteers 13 – Working within a city-wide team 14 How to get to us – Route map 17 – Ground plan of the site 18 Caring for you at our therapies and rehabilitation centre Green pages 21–43 Caring for you as an in-patient Blue pages 45–79 Caring for you at home Yellow pages 81–91 Working to high standards 93 Policies which affect you 94 Index 96 4 5 Welcome to St Luke’s Hospice Who our patients are Most people associate us with caring for people with advanced What is St Luke’s? cancer, but we also care for those with non-cancer conditions. Some have heart, lung or kidney disease, and others have St Luke’s is Sheffield’s only hospice. We are also a charity. When neurological conditions, such as motor neurone disease. we opened, in 1971, we were the first hospice outside London. Our patients might be any age over eighteen, be from any part The type of care we provide is called palliative which is the of the Sheffield region and belong to any religion, or none. specialist care of people who have advanced and progressive Occasionally, we also accept patients from other parts of the illnesses for which there are no cures. Our purpose is to improve country, if they are at the end of their lives and have close family the quality of life for local people, like you, with these types of living in this area. 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, Caring for individual needs compassion and respect. We treat every patient as an individual, rather than as one of a crowd. With this in mind, we would always tailor your care to Our expertise comes from a high level of professional training your particular needs, whether they are physical, psychological, and many years’ experience of providing palliative care. Our social, spiritual, emotional, financial – or a mixture of them all. standing is recognised by other health professionals in the wider community. This results in local hospitals, GPs and district nurses We would make sure that we know your preferences and seeking our advice, daily, about their own patients who have wishes, and that you know the choices open to you at all stages palliative care needs. of your care. Lastly, but of prime importance, we would protect your privacy and dignity and treat you with the utmost respect Peace of mind, contentment and relief from pain and other at all times. symptoms are central to everything we try to do for our patients, regardless of their personal circumstances. In this, we are guided by the desire to treat everyone fairly, equally and honestly. We believe that communicating constantly, clearly and sensitively is the key to mutual understanding and acceptance. St Luke’s works constantly with the NHS, local care homes and council departments to further develop exactly the range of care and support services which all people with life-threatening illnesses need and deserve. 6 7 What we can provide for you How you become a patient • In-patient unit care if you become seriously-ill or acutely You would be referred to us by your GP, hospital nurse or distressed, or need immediate symptom control consultant, or other health professional working in the • Therapies and rehabilitation centre care if you need access community who feels that the type and range of care we offer is to specific therapies and professional services and choose to right for you. He or she would do this by filling in a particular be a day patient or out-patient form and sending it to our referrals team based at the hospice. This always happens, whether we are asked to care for you as • Advice and support for you and your family and carers from an in-patient or as a day patient, or for a member of our our community specialist palliative care nursing team if specialist community team to see you at home. Whether or not you are living at home we accept you as a patient depends on your particular case. • On-going support and care for your family and close friends throughout your illness Occasionally, for referrals to our in-patient unit, you might have a short wait for a suitable bed, but if it becomes clear that you’re • A range of traditional and complementary therapists and in urgent need, we’ll admit you as soon as we possibly can. professional advisers Throughout their time as patients of St Luke’s, many people Your medical and nursing care sample the whole range of services we offer. It’s quite usual for St Luke’s is known nationally for providing excellent care for a day patient, or for someone we support at home, to choose to people with illnesses like yours. A team of specialist doctors and be admitted as an in-patient from time to time. On the other consultants provide our medical care. Our nurses are highly hand, some people use only one of our services. trained and experienced. All work to the highest standards. What we can’t provide for you While you are a patient of ours, we would be happy to discuss your care options with you, at any time. You could see your • Pre-booked respite stays in the in-patient unit medical records, if you wanted to, and we would always answer • Long-term nursing care any questions you may have about them. However, we can give you information about local nursing We would respect your carers’ special roles and, with your homes which offer the type of respite and long-term nursing permission, would always arrange for them to see medical or care which meets your particular needs. nursing staff if they, or we, thought it necessary. 8 9 Our professional advisers and therapists Will we charge for your care? We have a number of traditional and complementary therapists No. Nor would we expect you to offer to pay. However, as a and professional advisers who work hand-in-hand with our charity which needs to raise money in order to exist, we would medical and nursing staff. always be grateful for any contribution you feel is within your means. You can rest assured that any therapy we might give you would be suitable for your particular condition. Unfortunately, we If you become an in-patient and you’re a member of BUPA, cannot guarantee the availability of all specialist therapies and Westfield, or another medical insurance scheme, please tell the professional advice at all times. nurses caring for you. They will arrange for someone from our social work department to help you to make a claim. How we are funded – and how we raise funds Having your say St Luke’s is a charity. Currently, our annual running costs are £6.8 million. We expect the government, via NHS Sheffield, to We are always interested to hear any comments or suggestions give us around £2.3 million towards these costs because we are about our service, both good and bad. As a patient, you could a vital local healthcare provider, but this still leaves us having to complete a form in our ‘We welcome your views’ leaflet, which raise £4.5 million ourselves. In doing this, we rely greatly on the is available from our main foyer. Alternatively, you could talk to support and generosity of local people, many of whom are our service user co-ordinator whose job it is to listen to committed supporters who make regular charitable donations suggestions for change and improvement from patients and their to us. Most of these people have had relatives, friends or carers and families. Reception staff or one of the nurses would be neighbours who were in our care recently or in the past. Their pleased to put you in touch with the co-ordinator, if you ask.