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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…

a decision now doesn’t mean it can’t be changed. Talking about how to pay for end of life care is an important consideration when discussing where to be cared for. There are lots of different sources of help with end of life care costs and sometimes it is difficult to work out what you may or may not be entitled to. To help with this go to Funding End of Life Care . Things to think about Seek clarity about the type of care the person you care for wants at the end of life that might influence where end of life care is best provided. Discuss the options of where to die with the person you care for, outlining the pros and cons of each option. You can read the NHS guide to where you can have end of life care . If the person you care for is not sure, talk with other family, their GP, and other health or social care professionals involved in their care. Discuss diagnosis, prognosis…

There may be a number of people who become involved in the person you care for’s end of life care and the provision of support to you as their carer. The person you care for may receive support from some or all of the following people, and you and the person you care for can ask questions to any… will provide the best possible care for both of you and can be helpful in planning ahead for end of life together. A counsellor is trained to help people in all types of situations, including end of life. They will be able to help you and the person you care for to understand and express their feelings… about end of life care without judgement and offer support which is right for you as an individual. They will be aware of the importance of diversity and people’s different views and beliefs. An occupational therapist (OT) will assess the skills and abilities of the person you care for in relation…

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…

to help you have these discussions. Remember that any other children in your family are likely to have questions and concerns about their brother or sister. Generally speaking it is best to keep them in the picture but avoid giving them more information than your child with the life limiting…

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.…

You and your child’s transport needs will be a crucial part of your child and family care plan. Getting the right help with transport issues can improve daily family life. You can ask your child’s care team about getting driving lessons, accessing specially adapted cars to take bulky equipment or adapted car seats. You can also think about applying for the Blue Badge scheme for disabled parking. To get mobility allowance your child must be under the age of 16. For the low rate mobility component they must be aged over five, and for the high rate mobility component they must be aged over three. If you are the parent for a young person over 16 and they have care or mobility needs, they may be able to claim a Personal Independence Payment instead. The Motability Scheme helps you get mobile by exchanging your child’s higher rate mobility allowance to lease a new affordable car…

or seriously ill child or young person to have the opportunity to choose how they would like to take a break, with a view to improving the quality of life, health and wellbeing of the whole family. The Family fund will also pay for washing machines, sensory toys, bedding, tablets, furniture, outdoor play… care so that you can have a regular break from caring. Parent carer breaks should be built into the child and family care plan. Having a holiday or break for your child on their own or all together can make a massive difference to your quality of life and enables you to build important memories…