Often, patients with cancer do not raise issues important to them with their doctors or nurses.
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- Brook Anthony
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1 p.0 Name:
2 Often, patients with cancer do not raise issues important to them with their doctors or nurses. These issues might include: Difficulty with relationships It may be about the relationships you have with your friends, the role you have within your family or intimacy issues you have with your partner. Symptoms and physical concerns You may feel anxious about your illness or about the changes in your body. Feelings and emotions You may feel low or worried. Money worries You may want to know more about the financial help available to you. Other concerns Your doctor or nurse should give you time to talk about your concerns, but you can ask for a discussion at any time that suits you. This discussion may be called a holistic needs assessment (HNA). It is explained in more detail below. People with cancer often require care, support and information in addition to the management of their cancer or condition. A holistic needs assessment is a discussion with your doctor or nurse to talk about your physical, emotional and social needs. The focus is on you as a whole not just your illness. Your doctor or nurse will need information from you. However, you decide how much information you would like to share about your current situation. This is an opportunity for you to talk about any worries or concerns you may have. It will help to clarify your needs and ensure that you are referred to the relevant services. In order to prepare for this discussion, you may be asked to complete a questionnaire such as the one below to bring to your next consultation. This is not compulsory and not having this assessment will not affect your care. However, many patients find having an assessment helpful as it can help to identify what help is available. It may be offered at certain times during your care, including: Around the time of diagnosis or start of your treatment p.1
3 The end of your treatment when your surgery, chemotherapy or radiotherapy has been completed Any time that you ask for one It may be carried out over the phone. With your agreement the doctor or nurse carrying out your assessment may refer you to other services that may be of help to you. Alternatively, if you prefer, you will be given written information about these services. If you would like your doctor or nurse to talk to your family and friends, or provide them with written information, they are happy to do so. Please ask. This leaflet explains how to complete a questionnaire to help you think about how you feel and the help you may need (see page 3 and 4). You can complete this either in clinic or at home. Following completion of the questionnaire, you may want to discuss your concerns with your clinical nurse specialist (CNS)/key worker. If you have completed this questionnaire at home, please contact your CNS/key worker to make an appointment. The role of your CNS/key worker is to give you support and information. He/she is your link to your hospital during your care. p.2
4 Using this questionnaire is a two step process. Step 1 Step 2 Please circle a number (0-10) on the thermometer that best describes how much distress you have been experiencing in the past week (including today). Using the concerns list (see page 4), for each item please tick YES or NO to indicate if it has been a concern for you during the past week (including today). Please tick discuss if you wish to speak further about your concern. Please speak with your CNS/key worker if you are not sure how to use this leaflet. I am happy and coping well YES NO Scores on your thermometer what to do now: 1-4: Your score indicates that your concerns are not causing you too much distress at present. However, there may be some additional sources of help available to you. It could be worth discussing this with your CNS/key worker and finding out about possible additional support. 5-6: Your score indicates that your concerns are causing you some distress that may be having a negative effect on your life at the moment. It is recommended that you talk with your CNS/key worker about finding ways to get some additional support. 7-10: Your score indicates that you are experiencing high levels of distress and this is likely to be having a significant impact on your life at the moment. It is recommended that you talk with your CNS/key worker about your concerns so that she/he can direct you to sources of help and support. She/he will assist you in accessing additional sources of help and support. p.3
5 PRACTICAL PRACTICAL CONCERNS CONCERNS Caring responsibilities Caring responsibilities Housing Housing or Finances or Finances Transport Transport parking or parking Work or Work Further or Further information information needs needs YES YES NO NO Discuss NO Discuss PHYSICAL CONCERNS My appearance Bathing or dressing Breathing difficulties Passing urine Constipation FAMILY FAMILY CONCERNS CONCERNS Relationship Relationship with my with children my children Relationship Relationship with my with partner my partner Relationship Relationship with other with relatives other relatives Diarrhoea Eating or appetite Fatigue, exhaustion or extreme tiredness Feeling swollen EMOTIONAL EMOTIONAL CONCERNS CONCERNS Loneliness Loneliness or isolation or isolation Sadness Sadness or depression or depression Worry, fear Worry, anxiety fear or anxiety Anger or Anger frustration or frustration High temperature or fever Getting around (e.g. walking) Indigestion Sore or dry mouth Nausea or vomiting Guilt Guilt Pain Hopelessness Hopelessness Difficulty Difficulty making making plans plans Sexual concerns Sexual concerns Sexual concerns Dry, itchy or sore skin Sleep problems Tingling in hands and feet SPIRITUAL/RELIGIOUS CONCERNS CONCERNS Loss of faith Loss or of faith other or spiritual other spiritual concern concern Loss of meaning Loss of meaning or purpose or purpose in life in life Feeling Feeling regret about regret the about past the past Changes in how things taste Hot flushes Memory or concentration Wound care after surgery Other medical condition or disability My app Bathing Breathi Passing Constip Diarrho Eating o Fatigue extreme Feeling High te Getting Indiges Sore or Nausea Sexual c Dry, itc Sleep p Tingling Change Hot flus Memor Wound Other m or disab YES NO Discuss PHYS Pain Other concerns: Should you wish to discuss your concerns with your CNS/key worker, please bring this leaflet with you to your next appointment. If you wish, the outcome of this discussion can be added to your medical record with an agreed plan of care and referrals to other professionals. p.4 Oncology Published: Jan 2013 Review date: Jan 2016 Reference no: 2309T Imperial College Healthcare NHS Trust
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