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descriptions of where care can be provided and who can provide specific child care services. You can find more general information relating to end of life care , where end of life care is provided and who might be involved in end of life care . Where to get help Hospital Palliative and end of life… referred to as ‘respite care’), a children’s hospice will provide specialist nursing care in the family home, symptom management, end of life care and bereavement support. Tailored support is free of charge to families and includes a named key worker and a comprehensive range of therapies and support… and education practitioners. Community children’s nurses Provide specialist nursing care to children at home and will often act as a child’s key worker. They will give specialist intervention for children and young people who have a life limiting illness requiring treatment, symptom control or end…

is supported to plan for their future and is involved in assessments and in developing a comprehensive plan which reflects their wishes. Every young person has both an end of life care plan and plan for ongoing care and support in adult services. Children’s and adult services will work together… With advances in medicines and technology more and more children with life limiting or life threatening conditions are now living into adulthood. Transition into adulthood is not a one off event but is a process that takes place during your child’s teenage years and should start at around 14… health services will be especially important for a young person with complex and life threatening health conditions and may need to include hospital and hospice care teams. For further information go to together for short live . Things to think about From the age of 14 years, healthcare…

relationships, social activities, education, religious, spiritual and cultural beliefs and values influencing care. Record of significant discussions with child or young person and their parent carers. Agreed treatment plans for end of life care and objectives. 24 hour access to pain… Here’s what you should expect as a parent carer in terms of providing care to your child and ensuring you and your family have the support you need for providing quality family life. Child and family assessment Your child should receive a multi-disciplinary and multi-agency assessment as soon… the best family life possible. It is a working document that is shared with professionals involved in your child’s care and provides the following details: Services and support needed to meet the assessed needs​ of your child, you and your family, including other children in your family. What…

As a parent carer there will be lots of things to think about when you are told your child has a life limiting or life threatening condition. Getting a diagnosis If you have just heard the news that your child has a life-limiting or life-threatening condition you will be in a state of shock and feeling overwhelmed. As well as feeling extraordinarily emotional you will have lots of questions, such as: How do I tell my child about their diagnosis? How do I tell others in the family? What will the future look like for my child? How will it impact on my child and others in the family, particularly any siblings? How can I make sure my child and family have as normal a life as possible? How can I cope physically and emotionally? A diagnosis should have been given to you via a face to face meeting in privacy and with someone there to support you. You should have been…

It may be that school is still a major focus of their lives. It is important to keep providing your child, as far as is possible, the opportunity to learn, develop, play and experience a normal life. School age children should be enabled to attend their own school for as long as they can, so that they can benefit from interacting with friends as well as receiving an education. The school can also provide your child and your family with an important source of support, including giving you a break during the day. If your child is no longer able to attend school due to their deteriorating health then education can continue through the hospital or hospice school or through the home tuition service for as long as your child is enjoying the experience and still learning. Things to think about Make sure your child’s school is part of the multidisciplinary team supporting your child…

the vital equipment, support and life skills they need to reach their full potential.…

When a person receives a terminal diagnosis it can create a wide range of emotions for them and you as their family carer. You and the person may feel angry, may feel it is unfair, may feel sad, shocked, or in denial. Living with a terminal illness can sometimes make family relationships diffic…

You may find the person you care for is challenging in their behaviour . ‘Challenging’ is often defined as when a person is putting themselves or those around them at risk, including yourself as their carer, or where their behaviour is going to lead to a poorer quality of life. It can also impact their ability to join everyday activities. It can include aggression, self harm, destructive behaviour, and disruptiveness. It is often seen in people who have a learning disability or a mental health problem such as dementia and it can affect the person’s ability to communicate . Things to think about As a carer try to understand why the person is behaving in the way they are. For example, they might feel anxious or bored or be in pain. They may be behaving in a certain way to get your attention. If this is the case then consider not responding directly to their behaviour although you…

specialised nursing care, medications, medical equipment, and supplies in the person’s own home that might help you. They can help improve the person’s quality of life by managing pain and the symptoms of their illness, but they can also give you emotional support and guidance. So if you haven’t…