For patients and families How we help I don't know where to start I am a patient who has just been diagnosed with a life limiting illness. Being diagnosed with a serious illness is hard. You might have lots of questions about all sorts of things, and it might be a frightening time for you and your family. It’s important to remember that different illnesses have different outcomes and progression, and treatments are getting better all the time. The first thing you may find helpful is to get more information to help you understand your situation, and there are a variety of people you can talk to: Talk to a healthcare professional who really knows your situation, such as your consultant, a specialist nurse or your GP. Sometimes it helps to take a list of questions when you go to meet with them so you don’t forget something you want to ask. If you have cancer and would like more information but can’t access your oncology nurse, there is a Helpline run by Macmillan that you might also find useful: 0808 808 00 00 (Monday - Friday 9am - 8pm) At this stage it may not be helpful to search the internet as the information can be too broad and not specific to your case, making it even more worrying. The options above should help you find the right people who can support you and help you to manage this difficult news. They will also anticipate your possible future needs. It may be that you would really benefit from our service for this support. If you think this is the case, do speak with your GP or consultant or call the Katharine House community nursing team for advice on 01295 811 866. I understand my disease but my family and I need more support/help. At home, or in a nursing home If you are at home and require very practical help, you can contact your GP or district nurse who will support and advise you. It is possible to get various levels of care to support you at home, and the health care professionals who know you best will be able to discuss this with you. If you are at home or in a nursing home and you have difficult physical symptoms or you require more emotional support, then ask your GP or care home staff if it would be appropriate for a specialist nurse from the hospice to visit. Sometimes we will do a couple of visits in order to help you feel more confident about life again, sometimes we will come for longer. It all depends on your needs and wishes and we will continually discuss this with you and be guided by you. If at any point you are discharged from our service this does not mean that you can’t ever come back to us again if you think you need our help at another time. If you think you do need our help, just get in touch on 01295 811 866. At the Horton Hospital We have a specialist palliative care nurse working at the hospital, and also our palliative care consultants spend time at the hospital each week. The medical team looking after you may refer to us. If you are concerned that you may benefit from Katharine House support and this has not happened, please discuss this with your medical team. I am the relative or main carer of a patient who is very ill. Looking after the person who is ill If someone you love has just been diagnosed with a life limiting illness it can be shocking and frightening. It is also difficult to know where to go for help or to find your way around health and social care services. The key person to help if the person you love is at home or in a care home is their GP. They will do all they can to ensure that your loved one is comfortable and will also direct you to the care that is available. If the person has difficult physical symptoms or needs some emotional support then it may be appropriate for someone from the hospice to visit too. You can discuss this with the GP and we are happy to advise you if you would like. If the patient is in hospital and has just been diagnosed with very advanced disease, you can ask for the palliative care team to be involved. A Katharine House clinical nurse specialist (CNS) works in the Horton five days a week, with support from a Katharine House palliative care consultant on two mornings, and they will do their best to support the patient to get the best care in the best place for them, including getting them home if that is their wish. If you are in another Oxford hospital, support is available from the hospital palliative care team employed by Sobell House (01865 221741). Not everyone needs to come to the hospice. We can support patients at home, in care homes, and in community hospitals. Many patients do come into the hospice for the management of complex symptoms and then go home again. But some people prefer to stay where they are, so if this is best for them our Katharine House community clinical nurse specialists will visit them at home to offer support. If you have any questions or worries, we are only a phone call away and we’re happy to help if we are able. Please give us a call on 01295 811 866. You can also call us if you’re worried about someone in another part of the country. We will do our best to advise you. Alternatively, you can search for a hospice near them by visiting Hospice UK. We are not a nursing home. Therefore we aren’t able to accommodate people in our inpatient unit who, despite being very ill, are likely to live for some months and who do not continue to have specialist care requirements. Every person is treated as an individual and our team will discuss and agree their needs and help them make decisions and plans for their future care. Looking after you Caring for someone is challenging on lots of levels. And no matter how much you want to care for them it’s important that you don’t get forgotten. Our team will always want to support you as well as the person who is ill, and they don’t need to be a Katharine House patient for you to get support from the Living Well Centre drop-in service. For more details, please email [email protected] or call 01295 811866 and ask to speak to Pam (our Living Well administrator) or another member of the Living Well Team.