Hospice Care. Information for Patients, Families and Carers

Transcription

1 Hospice Care Information for Patients, Families and Carers

2 Our thanks go to the patients and family members who have contributed to this publication. Registered Scottish Charity No. SC012372

3 Rhona M Baillie Chief Executive Welcome to The Prince & Princess of Wales Hospice As you are reading this booklet, it has probably been suggested that the services of The Prince & Princess of Wales Hospice could be of benefit to you and those close to you. This booklet aims to give you a general introduction to all our patient and carer services as well as answer some of the questions you may have about the Hospice. Please ask our staff for any further information you require. People need help to deal with the consequences of being diagnosed with a life limiting illness, whether it is cancer or another condition. At The Prince & Princess of Wales Hospice, we work as a team to provide excellent care and support, free of charge, to those who need it. Our staff and volunteers are specially trained to work with individuals and their families who are living with significant challenges to their health and well-being. WELCOME AT HOME AT THE HOSPICE HOSPITAL INFORMATION 1

4 Benefits of hospice care: Can help to make you more comfortable if you have distressing symptoms. Offer practical and financial advice. Offers sensitive support for you (and the people close to you) to help with the important issues, taking the time you need to talk through what matters to you most. Will care for your physical, emotional, social and spiritual well-being. Will also offer support to those closest to you, both during your illness and afterwards. Our aim is to provide comfort and peace of mind. You will be treated with respect and dignity. We will offer appropriate care for all, with respect to age, disability, culture and communites. We are continually reviewing our services with the support of patients and carers to ensure we provide a first class service which meets the needs of the Glasgow community. Rhona M Baillie, Chief Executive For further information, including up to date details of the Hospice staff and services, please visit 2

5 Commonly asked questions As you read through this information you are likely to have a number of queries. Below we ve detailed the most commonly asked questions but please don t hesitate to phone us if you have anything else to ask. We are here to help. Is hospice care only for people who are dying? Hospice care is about living as well as dying. We will support you to live as well as you can, while also being there for your family and friends. What is a hospice? A hospice delivers specialised care to individuals with life limiting illnesses and their families. This could be in your home, at a clinic, or in the Hospice inpatient unit. What is palliative care? Palliative care means support for the physical and emotional problems related to a life limiting illness for patients and those close to them. Who do hospices care for? Hospice care is for people with cancer, and other life limiting illnesses. This could be heart failure, lung disease or neurological diseases. We care for people from all backgrounds and cultures and want to make it as easy as possible for those who need help to find it. How does the Hospice link with my own GP and other healthcare providers? We work closely with the primary health care team (your GP and District Nurse) and also link with the staff you see within Acute Hospitals, such as your speciality doctor or nurse. Does the Hospice take over my care? No, we will work in partnership with your own healthcare providers. Will I have a dedicated care team? Yes, you will have a dedicated contact person you can speak to, to discuss your care. WELCOME AT HOME AT THE HOSPICE HOSPITAL INFORMATION 3

6 Where is The Prince & Princess of Wales Hospice? We are located beside the River Clyde in Glasgow City Centre, next to the South Portland (Carlton) suspension bridge (see page 20). Do patients pay for hospice care? All care is free. What age group do you care for? Hospice care is not only for older people; younger people sometimes need support too, and the team will adapt their approach to suit your needs. The Hospice also offers The Butterfly Project children s bereavement support for those aged

7 The Hospice is not just about dying; it s about quality of life. A lot of people think a Hospice means the end but it is far from it. Partner of patient WELCOME AT HOME AT THE HOSPICE HOSPITAL INFORMATION

8 At home Our specialist team visit patients, their families and carers in their own homes. The Hospice Community Team is led by Clinical Nurse Specialists, with support from a Hospice Consultant and other members of the team. They will work alongside your GP, District Nurse and other community providers to support you at home. The team provide a high standard of care for you and your family to help you adjust to the changes in lifestyle caused by your illness. They will offer expert advice and support by: managing your symptoms, including pain control. accessing specialist financial advice. accessing practical support with personal care, household chores, shopping and more. providing emotional and spiritual support. The Clinical Nurse Specialist will undertake a full assessment of your needs and will keep in touch with you as long as you require their input. They can also ask the Hospice Consultant, occupational therapist, physiotherapist or counsellor to visit you at home or link you to one of the other Hospice Services. What is the difference between the Clinical Nurse Specialists and Macmillan nurses? They have a very similar role. There are no Macmillan nurses operating in the community within the area that we serve. What is the difference between the Clinical Nurse Specialist and Marie Curie nurses? Marie Curie nurses provide practical nursing care to patients with cancer, enabling them to stay at home where possible. The Clinical Nurse specialists are registered specialist nurses in palliative care. They offer advice and support to patients and their families, helping to adjust to the changes which illness can bring. 6

9 I was very unwell and needed help with basic things like sitting up in bed and washing. The Occupational Therapist from the Hospice came to my house to assess my needs and organised the help I needed. This kept me at home and helped me to be a bit more independent. Patient Your family and carers can also access support for themselves if they need it from the Family Support Service (see page 12). The level of care and compassion was outstanding. It was wonderful that our Clinical Nurse Specialist was co-ordinating with the local District Nurse. They all made a very difficult time much easier for the family. Family member The service is available seven days a week. Important numbers for you: Hospice 24 hour helpline Clinical Nurse Specialist (weekend and public holidays 9am till 5pm) WELCOME AT HOME AT THE HOSPICE HOSPITAL INFORMATION 7

10 At the Hospice In this section you will find information about both our outpatient and inpatient services. Outpatient service The team work within the Hospice and offer a wide range of services which will be tailored to suit you and are designed to support you to live life as best as possible at home. This might involve attending for a one-to-one consultation or coming for the day to meet with our multi-disciplinary team within our Day Unit. The team will help: manage your symptoms. promote independence in everyday life. offer psychological support. enhance your feeling of well-being. Services include specialist medical advice, nursing, chaplaincy, physiotherapy and occupational therapy support. My partner and I saw the outpatient nurse on a monthly basis which worked really well for us both. The nurse was great; she understood our situation and we really liked her. She also recognised how stressed I was and advised I saw a counsellor. Partner of patient 8

11 I love coming here; it s somewhere you feel you belong. You can talk about your illness without getting upset and we always ask each other how we are getting along. Day Services patient You will be able to meet people, share experiences and take part in a range of activities including: art and creative writing workshops. peer support, encouraging social activity. complementary therapies. Our outpatient care is flexible and will be designed to suit your needs. You can attend by yourself or come with a family member and we can help with transport. Important numbers for you: Day Services Direct Dial WELCOME AT HOME AT THE HOSPICE HOSPITAL INFORMATION

12 Inpatient service At times you may need more specialist support from our team and may benefit from an admission to the Hospice. Some people are admitted for control of distressing symptoms and others for care at the end of their life. Our team will: strive to relieve symptoms if you have problems such as persistent pain, tiredness or difficulty breathing. help you maintain or regain your independence so you can continue to do things for yourself for as long as possible. offer emotional support to you and those close to you, including children. help you be cared for in the best place for you (home, hospice or alternative care environment). Because we knew my Dad s medical and physical needs were being taken care of, we could concentrate on just spending precious time with him. Son of patient 10

13 Help was offered and staff would always discuss the care we could have. My family, especially the children, were always considered and spoken to and dealt with in the best way possible. Daughter of patient Some people have a preference for where they are cared for and we will work with you and your family to achieve this. If you or your family think an admission would be helpful, please discuss the options with your Hospice Team member. If you need help we are available seven days a week. The staff have knowledge and expertise to deal with the pain relief, they have the skills and understanding to make dying dignified. At times, there was banter and laughter but their support and understanding made the process of grieving for him slightly easier. We basically moved into the Hospice for Dad s last five days, and participated in his care. This helped me deal with what was going on. Daughter of patient WELCOME AT HOME AT THE HOSPICE HOSPITAL INFORMATION 11

14 Family support service Our Family Support Team offer care advice, information and support for you and any of your family and carers as you live with the effects of your illness. Spiritual and religious support is offered by the chaplain in day services, inpatient unit and through home visits. We welcome any member of your own faith community and can organise this if wished. The Hospice also provides a dedicated Prayer Room, which anyone can use as they wish. For adults The Family Support Team is able to offer one-to-one support and counselling within the Hospice or at home. In addition, a number of support groups for carers or bereaved people run throughout the year. This includes a monthly bereavement drop-in which takes place at the Hospice. I was quite young when I was diagnosed with cancer and that is a big part of why I found it so hard. I looked alright from the outside but from the inside I was screaming. The counsellor walked into my life at the perfect time and I owe her a lot. Without counselling I don t think I d be here today. Patient If you are a carer, support can be offered on a one-to-one basis or you may find the carer information and support group helpful. 12

15 I ve been having counselling for two years. At first I said, I don t think so. But honestly, it has changed my life. I can rant, laugh, talk and cry. There are no rules or regulations. Mum of patient For children and young people Children can be seen with parents and/or carers to help explain a serious illness and its implications or they may be seen on their own. The therapist will explore (through talking, story or play) the impact of illness or bereavement on their lives. Children can be seen at the Hospice, at home or at school depending what best meets their needs. The team also seeks to provide support, information and advice on bereavement to teachers, social workers and others who engage regularly with bereaved children and young people. Despite his brother being so ill, my son is thriving. He knows everything, nothing is hidden. It makes sense, no secrets. We give him his place. Mum of patient WELCOME AT HOME AT THE HOSPICE HOSPITAL INFORMATION 13

16 Hospital The Hospice links with local hospitals, ensuring that patients and families are supported through challenging times wherever they are receiving care. The Hospital and Hospice work in partnership to provide Palliative Care Services across the Southern General, Victoria Infirmary, Mansionhouse Unit and Mearnskirk Hospitals. The team is made up of Consultants who work at the Hospice and Specialist Nurses who are based in Hospital. Together, with the doctors and nurses on the wards, the Palliative Care Team provide advice on symptom control, helping in decision making and offering general and/or psychological support for patients, families and carers. As the patient, and with your permission, any choices you have discussed will be shared with the health care professionals caring for you. If you wish to be cared for in another place, for example home, residential home or Hospice, the team can help, where possible, to facilitate this on your behalf. 14

17 The partnership with the hospital is key to building the relationship with the hospital and Hospice Palliative Care Team. Having the same team in both the hospital and Hospice makes all the difference, very valuable. He absolutely trusted the Doctor who he regularly saw in both places. It was such a relief to know that the same people were looking after him throughout. Patient s partner If you are admitted to hospital whilst receiving support from one of our teams, please let us know and ask to see the Hospital Palliative Care Team. The team are available 9am to 5pm, Monday to Friday. Messages can be left outwith these times on: Victoria Infirmary: Southern General Hospital: Secretary: If the hospital team caring for you need advice outwith these times, they can contact The Prince & Princess of Wales Hospice and/or access the doctor on call 24 hours, seven days a week. WELCOME AT HOME AT THE HOSPICE HOSPITAL INFORMATION 15

18 Information Coming to the Hospice You are always welcome to visit the Hospice in Carlton Place. If you would like to visit, please arrange with your care team who will make sure you are met, welcomed and shown round. You are always welcome to come into our café which is open 24 hours a day. Parking / public transport The Hospice has a small car park to the rear of the building. When the car park is full, on street pay and display parking is available within the immediate vicinity of the Hospice or alternatively, city car parks are nearby. We are close to all public transport links including Glasgow Central station, Queen Street station, St. Enoch or Bridge Street underground stations and bus stops. Reception and security Please come to reception when you arrive. There is a ramp entrance to the rear of the building for patients and disabled visitors directly from the car park. For the safety of patients, visitors, staff and volunteers, security cameras are in use both in and around the Hospice. 16

19 Volunteer Services The Hospice offers a well-established volunteer service in all areas of care, including assisting with patient transport, meeting visitors and helping trained staff in their work. Confidentiality The confidentiality of patient information is of paramount concern to the Hospice. We comply fully with data protection legislation and medical confidentiality guidelines. The Hospice recognises that visitors and family members wish to be informed of a patient s progress, however your permission will be sought before this information is shared and your confidentiality will always be maintained. Discharge from Hospice services If you, with your healthcare team, feel that your needs, wishes and requirements have been met, you can be discharged from the Hospice service. This will be in discussion with you and those close to you, other health care professionals and relevant agencies, with clear information about how you can be re-referred. WELCOME AT HOME AT THE HOSPICE HOSPITAL INFORMATION 17

20 Your feedback matters Your Views We are always keen to hear about your experiences of care - what has worked and where can we improve. This helps us to develop and improve our services. Leave your comments via: Our online feedback survey: Suggestion box outside the visitor lift in the ground floor reception area, the inpatient unit, cafe and day services lounge. Writing to: Director of Clinical Services, The Prince & Princess of Wales Hospice, FREEPOST SCO1724, Glasgow G5 9BR Confidentiality will be maintained and all written comments and suggestions will receive a reply in writing within 10 working days. There are also opportunities to contribute to service development so please let us know if you are interested. 18

21 Complaints The Hospice aims to settle the majority of complaints quickly and satisfactorily. The complaint may be resolved by way of an apology, by providing the service required or by providing an acceptable explanation to the individual. Individuals wishing to make a complaint can contact the Hospice by: ing info@ppwh.org.uk writing to: The Chief Executive, The Prince & Princess of Wales Hospice, FREEPOST SCO1724, Glasgow G5 9GB; or using Complaints, Comments or Suggestions Form available on request from the Hospice. The Hospice can provide support to individuals who require assistance to ensure they are able to express their complaint adequately through the above mediums. Our aim is to resolve any complaints within 30 working days and to provide you with a full explanation of the outcome. Should you feel that your complaint has not been resolved satisfactorily by the Hospice, you may contact Healthcare Improvement Scotland (our care regulator) to make a complaint or for advice. Please write to: Adrian Masson Head of Corporate Secretariat Healthcare Improvement Scotland Elliot House 8-10 Hillside Crescent Edinburgh EH7 5EA T E. adrian.masson@nhs.net W. WELCOME AT HOME AT THE HOSPICE HOSPITAL INFORMATION 19

22 Map & Directions 1 2 The Prince & Princess of Wales Hospice 71 Carlton Place, Glasgow G5 9TD Tel: Fax: Rail Glasgow Central Station is approximately 10 minutes walk from the Hospice. Queen Street Station is approximately15 minutes walk from the Hospice. 3 4 Bus Routes For bus routes please call Traveline Scotland on (10p / minute from a BT landline). Glasgow Subway Bridge Street Station is approximately 5 minutes walk from the Hospice. St Enoch Station is approximately 5 minutes walk from the Hospice. Glasgow Airport The Airport is located at Junction 28 on the M8 west of Glasgow. The journey time is approximately 15 minutes by car. 20

23 The Hospice takes a whole family approach. Where it may not be possible to add days to lives, we aim to add life to days. WELCOME AT HOME AT THE HOSPICE HOSPITAL INFORMATION

24 How we are funded The Prince & Princess of Wales Hospice is a charity providing care, free of charge, to the people of Glasgow. The cost of all Hospice care is approximately 5 million each year, 2 million of which comes from NHS Greater Glasgow and Clyde, leaving us with the task of raising 3 million annually, so we can continue to provide our services to patients and their families at no charge. The Hospice team work together to raise these funds via our community and business support, fundraising events, trusts, donation cans, Hospice lottery and our Hospice shops. To find out more about this, please visit ppwh.org.uk/fundraising 22

25 The future of The Prince & Princess of Wales Hospice Front Entrance Butterfly Children s Bereavement Our present home at Carlton Place has served us well for over 30 years and constant innovative adaptations have ensured that the team have delivered high quality care. However, space for our services is limited and following careful consideration, there is now a pressing need for us to relocate to a purpose-built facility on a site in Bellahouston Park, gifted by Glasgow City Council. This development will be a major step forward in the provision of palliative care services for the people of Glasgow and will provide us with the flexibility to deliver, and improve, our current services for patients and their families. We have launched our Brick by Brick Appeal to raise the money required to build this 21st Century Hospice for Glasgow. There are many ways to become involved with fundraising for The Prince & Princess of Wales Hospice. If you would like more information about our fundraising work, please visit or contact us directly on WELCOME AT HOME AT THE HOSPICE HOSPITAL INFORMATION Registered Charity Number SC

26 The staff could never do enough for the whole family, it wasn t just the patient. Daughter of patient

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28 Contact Who to phone when you need advice or support with your hospice care During office hours (Monday to Friday 9am till 5pm) contact your named team member Name Number Name Number Main Hospice reception (from 8.30pm-5pm, Mon-Fri) Outwith these times please call: Hospice 24 hour helpline Clinical Nurse Specialist (weekend public holidays only 9am till 5pm) The Prince & Princess of Wales Hospice 71 Carlton Place Glasgow G5 9TD Tel: Fax: This information is also available: in larger print in other languages as requested on our website at in a format compatible with a kindle / tablet Please ask for additional copies for your family and carers. Please don t hesitate to phone us: we are here to help. Registered Scottish Charity No. SC012372