A guide to services providing palliative care at home Many people living with a life-limiting illness will have lots of different health and social care professionals involved in their care. This guide describes the roles of the different professionals Expand Many people living with a life-limiting illness will have lots of different health and social care professionals involved in their care. This guide describes the roles of the different professionals to make it easier for you and your family to understand who is involved, what their role is and where to get help and support, should you need it. With your permission, the different professionals involved in your care will communicate with you and with each other as needed, to ensure that everyone knows the current situation and plan. General Practitioners (GPs) GPs are responsible for the medical care of people living in their own home or in a care home. GPs work with other health care professionals such as district nurses, community matrons, specialist hospital and hospice teams, physiotherapists, dietitians and clinical nurse specialists to provide the best care for each person. Your GP will: assess your symptoms and prescribe medicines and other treatments to manage them seek expert advice from specialists when required provide information on your condition and the support services available to you liaise with the district nurse regarding yourcare at home District Nurses (DNs) If your illness means that you can no longer leave your house or care home (that is a home without registered nursing) for appointments or treatment, then a district nurse can help to arrange your care. District nurses may monitor skin conditions,administer medicines, change dressings, manage symptoms and order equipment to make caring for patients at home easier (for example, a hospital bed or a commode), amongst other tasks. District nurses also coordinate the other services that you might require, which can include community nurses, health care assistants, care workers, Marie Curie Nurses for night-sitting (see below), or other care agencies. District nurses provide a 24/7 service and work with you and those important to you to prepare a personal care plan. Social care Social services can organise non-medical care. This includes things like having meals delivered, adaptations to your home, and help with washing, dressing and eating. A social worker or another trained professional provided by the local social services department can assess your suitability for this type of care and help organise it. Social services can also help when someone needs to move into a care home. If you have a family member or friend looking after you (an informal carer), social services might be able to help them to get support as well. They can talk to them about their own needs. Support might include putting them in touch with local support groups, help with taxi fares if they don’t drive, and getting someone to take over caring for a while so they can take a break (respite care). Royal Trinity Hospice Specialist Palliative Care team The team at Trinity provides specialist palliative nursing and medical care. We will assess you and talk to your family or carers to provide the best care and support based on your needs. This holistic approach is delivered by a multidisciplinary team (MDT) and can involve different health care professionals from the hospice, each with specialist training and experience. This includes doctors, nurses, occupational therapists, physiotherapists and a patient and family support team, including counsellors. Most of the care and support Trinity provides is to patients and their families at home. Most homebased care and support is delivered by the nurse specialists, but you may be supported by different members of the MDT depending on your individual circumstances. The team will identify which other professionals are already involved in your care and work closely with them to support with any complex physical, psychological, social or spiritual needs that you have as a result of your life-limiting diagnosis. At Trinity, there is a 28 bedded inpatient unit (ward) where you may be admitted if your symptoms are complex and are difficult to manage at home, or if you are dying and would prefer to die at Trinity. Patients can be admitted directly from home or may be transferred from a hospital. The hospice is not a long-term facility so we may talk to you about transferring your care back toyour home or nursing home. Royal Trinity Hospice is an independent charity with only a small percentage funded by the NHS but allof the nursing and medical care we give is free. Macmillan nurses and other specialist nurses Macmillan Cancer Support funds a range of professionals to support people affected by cancer. Macmillan nurses are usually based inhospital and work alongside cancer specialists. They will support you to cope with your diagnosis and provide information regarding treatment options. Macmillan nurses are a key contact between you and your specialist cancer team and will support you throughout your treatment. They don’t carry out routine nursing tasks, but they may call you or see you at hospital outpatient appointments or if you are admitted to hospital. If you have an illness other than cancer you may get support from specialists who are experts in conditions such as motor neurone disease (MND), heart failure, chronic respiratory disease, multiple sclerosis (MS) or Parkinson’s disease. Marie Curie nurses Marie Curie nurses or health care assistants usually provide overnight care for a shift of 8 or 9 hours, usually when someone is in the last weeks or days of life. Whilst they are in the home, Marie Curie nurses will help manage symptoms, provide nursing care and support with medicines. They will also provide emotional support to you and your family and friends. They will assess your needs and inform the District Nurses of any changes so they can plan any kind of additional help you may need. Like Trinity, Marie Curie is astandalone charity and care is usually organised through referral by your DN or Specialist Palliative Care Nurse. It is not possible to include all services available here and there is likely to be variation depending on where you live within our catchment area. If you have a question about something you or your family member needs, please do not hesitate to contact us on0207 787 1062. We will put you in touch with the appropriate professional at the hospice, or signpost you to another team who can help. Download our guide to services providing palliative care at home We can send hard copies of this leaflet to healthcare professionals and other local partners for free. Click here to place your order.
Advance Care Plan Expand We aim to deliver the best possible care at every stage of your illness. We hope this Advance care plan helps you to tell us what is important to you and what you would like to happen in the future. This booklet is a patient-held record. Please fill it in alongside the Advance care planning leaflet. DOWNLOAD THE ADVANCE CARE PLAN BOOKLET We can send hard copies of this leaflet to healthcare professionals and other local partners for free. Click here to place your order.
Advance care planning This leaflet explains how to consider your choices and preferences for the future. Expand This leaflet explains how to consider your choices and preferences for the future. If you have any other questions we hope you will talk them over with a member of Trinity’s staff who will be glad to help. Serious illness brings challenges that many of us prefer to avoid thinking about. At the same time many of us fear loss of control about decisions relating to our health. Find out more about Advance Care Planning Other leaflets that Trinity produces which you might find helpful include: Lasting Power of Attorney Next of Kin Fluids at the End of Life Cardiopulmonary Resuscitation (CPR) Advance Decision to Refuse Treatment Corneal and Tissue Donation Advance care plan booklet Download the leaflet about advance care planning We can send hard copies of this leaflet to healthcare professionals and other local partners for free. Click here to place your order.
Advance decision to refuse treatment Do you want to decide now if there is any treatment you would prefer to refuse in the future? Expand Do you want to decide now if there is any treatment you would prefer to refuse in the future? If so, you should consider making an Advance Decision to Refuse Treatment. Read more about making an advance decision to refuse treatment or download the leaflet with the same information about advance decision to refuse treatment We can send hard copies of this leaflet to healthcare professionals and other local partners for free. Click here to place your order.
Anticipatory medicines ‘Anticipatory’ medicines are a small supply of medicines for you to keep at home, just in case you need them. Expand ‘Anticipatory’ medicines are a small supply of medicines for you to keep at home, just in case you need them. Download the leaflet about anticipatory medicines We can send hard copies of this leaflet to healthcare professionals and other local partners for free. Click here to place your order.
Blood transfusion This leaflet provides information on questions you may have about receiving a blood transfusion. Expand This leaflet provides information on questions you may have about receiving a blood transfusion. Download the leaflet about receiving a blood transfusion We can send hard copies of this leaflet to healthcare professionals and other local partners for free. Click here to place your order.
Cardiopulmonary Resuscitation (CPR) This leaflet gives you information about cardiopulmonary resuscitation (CPR) for patients who are known to the Trinity team, as an inpatient or at home. Expand This leaflet gives you information about Cardiopulmonary Resuscitation (CPR) for patients who are known to the Trinity team, as an inpatient or at home. Download the leaflet about Cardiopulmonary Resuscitation (CPR) We can send hard copies of this leaflet to healthcare professionals and other local partners for free. Click here to place your order.
Community services Trinity’s community services provide specialist care to you and your family in the comfort of your own home. You are also welcome to attend any of our individual and group activities at Trinity through the outpatients service. Expand Trinity’s Community Services provide specialist care to you and your family in the comfort of your own home. Download Trinity's Community Services booklet We can send hard copies of this leaflet to healthcare professionals and other local partners for free. Click here to place your order.
Corneal and tissue donation Donating organs, tissue or corneas after death can make a real difference to people who require transplants or treatment for an illness. Expand Donating organs, tissue or corneas after death can make a real difference to people who require transplants or treatment for an illness. Read more about corneal and tissue donation or download the same information in our leaflet about corneal and tissue donation We can send hard copies of this leaflet to healthcare professionals and other local partners for free. Click here to place your order.
Do you have private health insurance? This help sheet explains more about why Trinity collects private health insurance information and what we do with this information. Expand This help sheet explains more about why Trinity collects private health insurance information and what we do with this information. Download the help sheet about private health insurance
Fluids at the end of life This leaflet answers some frequently asked questions about fluids and the use of artificial hydration (fluids given by a drip) in advanced illness. Expand This leaflet answers some frequently asked questions about fluids and the use of artificial hydration (fluids given by a drip) in advanced illness. If someone can’t drink won’t they die from dehydration? It’s normal for a person who is seriously ill not to feel like eating or drinking. When the body is dying, all the organs, like the heart and kidneys, start to shut down and work less and less effectively. The digestive system also works less well, sometimes to the point where food is no longer digested and liquids are poorly absorbed. When this happens, people lose their appetite and may stop eating and drinking altogether. This can be upsetting because it is our natural instinct to provide food and drink as a way of nurturing those we care for. However, as the body weakens there is less and less need for fluids. Won’t they be thirsty if they can’t drink? For most people with only hours or days to live their body systems shuts down and thirst is not a problem. Strange as it may sound there are definite advantages to taking less food and drink at this time. The loss of appetite and thirst is nature’s way of helping the body prepare for a peaceful death. It is important to remember that it is the illness that causes the body to fail, not the lack of fluids. This leaflet answers some frequently asked questions about fluids and the use of artificial hydration (fluids given by a drip) in advanced illness. What can I do to help? If a healthcare professional tells you it is safe, you can carry on offering drinks, but don’t be surprised if your relative or friend only wants a few sips at a time. Eating and drinking becomes more of an effort when someone is very ill and they may need help to take sips of fluid. A drinking beaker or straw may make it easier. If your loved one is staying on the inpatient unit at Trinity, our staff will help you to make sure the drinks do not cause coughing or spluttering. Won’t their mouth get dry if they can’t drink? If your relative or friend does not even want to take sips of liquid you can use a small sponge soaked in cold water (or their favourite drink) to help moisten their lips and tongue. A member of Trinity staff will be happy to show you how to use these sponges. It is sometimes easier to suck, so some people like to have their favourite drink frozen as an ice lolly and others like to suck on crushed ice. There are also special saliva sprays and gels that our staff can tell you about, which may be helpful. Good mouth care is the most important thing for providing comfort. Do you use drips at Trinity? We may use drips if we think it will help the patient. Usually it is put under the skin, though occasionally we will use an intravenous drip. If a drip is started, its use will be reviewed every 24 to 48 hours to see if it is helping and to make sure there are no side effects from it.As the process of dying continues, drips do not always help and can cause problems, as often the body does not need the same amount of fluid and cannot cope with it. Fluid from a drip may, for instance, build up in the lungs making breathlessness worse. The doctors and nurses will assess each patient individually and weigh up the benefits and burdens. They will discuss the use of the drip with the patient and, if it is causing problems, they may advise that it is stopped. The patient always has the right to say if they wanta drip removed. If the patient is too ill to make a decision, the doctors and nurses will make a careful assessment and have a discussion with the family, so that a decision can be made that will help the patient to be comfortable. Download our fluids at the end of life leaflet We can send hard copies of this leaflet to healthcare professionals and other local partners for free. Click here to place your order.
Giving as-required injections for pain and symptom control in the community This booklet provides information and guidance for carers who have are giving as-required injections for pain and symptom control in the community. Expand Sometimes relatives can be taught how to give injections to ensure comfort and control pain and other symptoms. This is similar to giving oral pain relief/other oral medication but the route of giving has changed as the patient is no longer able to swallow. This booklet provides information and guidance for carers who have are giving as-required injections for pain and symptom control in the community. Download the leaflet about giving as-required injections for pain and symptom control in the community We can send hard copies of this leaflet to healthcare professionals and other local partners for free. Click here to place your order.
Helping you understand and cope with breathlessness This leaflet explains the causes and symptoms of breathlessness and gives general advice on how to cope with, and manage, your condition. Expand This leaflet explains the causes and symptoms of breathlessness and gives general advice on how to cope with, and manage, your condition. Download the leaflet on breathlessness We can send hard copies of this leaflet to healthcare professionals and other local partners for free. Click here to place your order.
How we use your personal information This leaflet provides information about what personal data we store, and how this is processed. Expand This leaflet provides information about what personal data we store, and how this is processed. Download your personal information guide
Lasting Power of Attorney Would you like to appoint somebody to make health care and/or financial decisions on your behalf, should you lack the capacity to make these decisions for yourself in the future? If so, you need to consider setting up a Lasting Power of Attorney. Expand Would you like to appoint somebody to make health care and/or financial decisions on your behalf, should you lack the capacity to make these decisions for yourself in the future? If so, you need to consider setting up a Lasting Power of Attorney. Read more about Lasting Power of Attorney or download the same information in a leaflet about Lasting Power of Attorney We can send hard copies of this leaflet to healthcare professionals and other local partners for free. Click here to place your order.