Introduction
If a person is very ill with a progressive incurable disease and the condition cannot be cured, their comfort and quality of life will take priority. Care of this kind is called palliative care.
Respite care can give a break to a person who is caring for someone at home who is ill.
Many people reading this booklet will be receiving palliative care (or will be caring for someone who is receiving palliative care). However, some readers will be receiving active treatment which aims to cure their illness so some of the information will not be applicable to them – please don’t be distressed if you read something that doesn’t apply to you.
The Marie Curie Nursing Service may provide nursing or respite care to both sets of people.
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Your care plan
The District Nurse (or in a few cases another specialist nurse) coordinates your care at home. The District Nurse will discuss your care with you and your carer, and will talk to you about different services and options that may be suitable for you. Tell them what your wishes are in relation to your care and what support you think you need.
If appropriate, do also talk to them about where you would like to be cared for at the end of your life, and where you would like to die. For instance, do you hope to stay at home? Or would you prefer to go to a hospice, or hospital? The District Nurse can then put together a care plan for you which reflects your wishes. Don’t worry about what will happen if you change your mind about anything, or if your needs change later. The care plan will be reviewed regularly – with your input, if you wish - and amended if necessary.
The care plan should be left in your home. It tells all the healthcare professionals involved with your care what treatment and care you have already received, what is planned
and what your wishes are.
Every healthcare professional should record any care they give you and any discussions you have with them about what you want.
You are entitled to see your care plan and to discuss it with the District Nurse and any other healthcare professionals involved with your care. If you have any problems – for instance, if you don’t have a care plan in your home or if you feel it doesn’t reflect your wishes or discussions you have had with anyone – talk to the District Nurse or the relevant healthcare professional, or to your GP if necessary.
If you have a living will or advance directive (please see the Planning for the future: making a living will section for further information), discuss it with the District Nurse.
Ask for a copy to be added to the care plan, and make sure that the care plan reflects your wishes as expressed in your living will. If you don’t have a living will but would like one, ask if they can help you with this.
As well as discussing your care with you beforehand, healthcare professionals require your informed consent before they undertake any procedure. It is a legal requirement that they explain every procedure to you – what they will do, what the risks are (if any) and why they are doing it - before they go ahead with it. They should explain that it is your right to refuse any treatment or procedure offered, and they need to be sure that they have your consent before they start any treatment or procedure. It doesn’t need to be as formal as this may sound – a good nurse or healthcare worker will talk you through what they are doing anyway.
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The Marie Curie Nursing Service
Many people who are seriously ill wish to remain at home as long as possible. The Marie Curie Nursing Service helps to make this possible through a nationwide network of Marie Curie Nurses who provide nursing care at home.
The service is free to patients and the people who care for them.
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Requesting a Marie Curie Nurse
When discussing your care plan, the District Nurse may mention the Marie Curie Nursing Service and discuss with you whether it would be appropriate to request a Marie Curie Nurse. If so, they will also discuss what visits would be best (eg overnight or daytime) and what number/frequency of visits would be appropriate.
They will also consider whether your nursing needs require a registered nurse or healthcare assistant (please see the Registered Nurses and Senior Healthcare Assistants section for more information on this).
The District Nurse will review your care regularly and decide whether to change the amount of visits they are requesting from the Marie Curie Nursing Service or the grade of nursing staff, depending on whether your condition has changed. Sometimes they may decide not to request any more visits for a while if, for example, your condition has improved.
The District Nurse will supply any equipment needed for the Marie Curie Nurse to care for you at home. We do our utmost to fulfil every request for a Marie Curie Nurse. However, sometimes no nurse may be available for the specific visit that has been requested. We will try to offer a different day or time to the District Nurse if possible. The District Nurse may discuss this with you. Marie Curie Nurses are not permitted to make arrangements
for visits directly with you or your carer. Visits must be arranged through the District Nurse.
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How the Marie Curie Nurse can help you
Marie Curie Nurses recognise their role as a guest in your home. They are used to working in people’s homes during difficult times, and will work with you to make sure that this arrangement is as comfortable as possible for you. Your District Nurse has arranged for a Marie Curie Nurse to visit for a particular reason, for example to monitor the effects of a change in your medication or to provide a period of nursing care and allow your carer to get some rest.
Your Marie Curie Nurse will phone you before setting out for your home in order to introduce themselves and to confirm that they are on their way. The Marie Curie Nurse provides the nursing care you need. They can provide practical and emotional advice and support to you and your carer/family, and also have the time to listen to any concerns about your illness or treatment.
The Marie Curie Nurse monitors your condition during the visit and deals with any changes that occur during the visit. To help plan future care, the Marie Curie Nurse will tell the District Nurse about any changes in your condition.
Your carer can still be involved in caring for you while the Marie Curie Nurse is in your home. For example, if they would like to be woken up during the night if there is a change in your condition, please tell the nurse. Please also tell the nurse whether your carer would like to be woken before the nurse leaves in the morning, and whether you need any personal care before they leave.
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Hours of duty
Marie Curie Nurses provide care for at least three hours and generally for a shift of eight to 10 hours. They usually visit overnight, but can also work during the day. In consultation with you and your carer, the District Nurse will decide what hours of care are needed. A night shift is usually from 10pm to 7am but it may be possible to negotiate different times via your District Nurse.
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What you can expect
Marie Curie Nurses have up to date experience of working in hospital or the community, and looking after patients at home on a one-to-one basis. They are offered regular updates in caring for patients. Marie Curie Nurses are trained in safely moving and handling patients at home.
We aim to ensure continuity of care by providing as few different Marie Curie Nurses as possible to you. Marie Curie Nurses are not allowed to smoke or sleep while on duty. We want to make sure that you receive the care that you need. In doing so, we must also make sure that our nurses work in a safe environment. You can help us by creating a smoke-free environment in the rooms where our nurse is caring for you. We cannot insist that nurses work in conditions where there is a risk of passive smoking. By providing a smoke-free environment you can make it easier for us to provide you with as much help and support as possible.
Marie Curie Nurses are not permitted to watch TV, videos or DVDs unless you have them on in your room.
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Registered Nurses and Healthcare Assistants
Marie Curie Cancer Care employs both registered nurses and healthcare assistants to care for cancer patients and other patients in their own homes. Marie Curie Cancer Care uses the job title Marie Curie Nurse for registered nurses and Marie Curie HCA for healthcare assistants, but in this booklet we generally use the term Marie Curie Nurse for both.
The District Nurse assesses whether a registered nurse (Marie Curie Nurse) or healthcare assistant (Marie Curie HCA) is appropriate, depending on your nursing needs, the availability of other services and the needs of your carer or family.
All Marie Curie Nurses and Marie Curie SHCAs provide practical nursing care for patients and support for carers in their homes, but there are differences in their qualifications and in the work they are permitted to do.
Some of the most significant are listed below:
Registered nurses
- Registered Nurses can administer medicines to a patient and give injections.
- All Registered Nurses are registered with the UK Nursing and Midwifery Council, and will have a nursing qualification. Marie Curie registered nurses also have palliative care experience and have completed a specialist course in palliative care.
Healthcare assistants
- Marie Curie HCAs have experience and training in providing care for patients with palliative care needs.
- Marie Curie HCAs are not allowed to administer any medication. They may help a patient who is not confused to take their medicine themselves. They cannot give injections.
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Things to do before the Marie Curie Nurse’s arrival
There are a few things you can do to prepare for the Marie Curie Nurse’s arrival.
It would be very helpful if you could put a reasonably comfortable chair in the room where the nurse will be working. If your room has an intercom, the nurse can be based in another room. If not, the nurse should remain in your room if possible (which is preferable even if an intercom is available).
The nurse will need a light so that they can monitor you during the visit.
You are not expected to provide food for the nurse. However, nurses do appreciate being able to make themselves a hot drink during the shift. Suitable heating is also appreciated, especially during the colder months and at night.
Please ensure the following are handy:
- District Nurse Care Plan with the prescription for medication to be given;
- emergency drug box if the District Nurse or specialist nurse has provided one;
- clean bed linen and night clothes for you in case a change is needed during the night;
- any equipment that has been left by the District Nurse to help with moving you;
- telephone numbers of doctor or other healthcare professionals and details of when to call them (if your condition changes, in an emergency, etc.);
- telephone numbers of family/carers and information about when they should be contacted, if appropriate.
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When the Marie Curie Nurse arrives
We understand it can be confusing to have many strangers visiting your home to provide care and assistance. Marie Curie Nurses must always show their ID card when they arrive; wear their uniform and name badge; and leave a visiting card with their name after every visit. If they do not, please ask them to do so.
It is helpful for the nurse to be introduced to you and any other people they may need to be in contact with during the shift. The introduction also helps the nurse know how you and your carer like to be addressed eg Mrs Jones or Barbara. The nurse should also be told if you have any likes and dislikes, and if you have any special names for things (especially if you sometimes feel confused).
Please show the nurse where they can wash their hands and where the bathroom is.
When our nurse arrives at your home, they need to contact CommuniCare, our lone worker system, to say they have arrived safely. (They will need to do the same when they leave your home.) Some nurses use their mobile phone to do so but for technical reasons some may ask to use your phone. We very much appreciate your agreement to this. It is a freephone number so you will not be charged for the call.
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