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It is likely that your child will have been diagnosed in a hospital setting. The time that your child is able to return home will vary depending on the nature of your child’s illness. It may be your child needs immediate medical attention following diagnosis or your child may be able to go home straight after diagnosis. Whenever is the right time for your child to be discharged home there will be a number of things that you will need to be aware of: Planning for transfer from hospital should start as soon as possible. As part of that process there should be an initial assessment meeting involving you and key staff supporting your child. This is likely to include hospital staff, community health staff, social care workers, your GP and you and immediate family. You, your family and your child’s needs should be discussed and a plan drawn up to enable your child to return home safely…

. If looking for a care home provider which offers respite Care Choices may be of help to you. If you need help to access a break from your caring role or need more local information about carer breaks talk to Action for Carers Surrey or if you want additional information outside of Surrey access… Taking a break from caring for the person who is terminally ill is vital for your own health and wellbeing. If you don’t take a break then there is a danger that you will become unwell yourself and be unable to continue caring for them. Sometimes taking a temporary break from caring is called respite. What sort of break you have and how long that break is will depend on what works best for you and the person you care for. It is sensible to talk with them about taking a break from your caring role when planning ahead together. You may prefer a few hours regular break each week, or you may…

independent. This is called home help or domestic support. It’s different from personal care, but you can get both. Find local services Use this website to find local help to look after your home. You can: search by keyword, like cleaning , gardening or handyperson enter your postcode… , or walking aids Browse the home equipment finder Find trusted tradespeople If you want to find your own trader, use trusted sources to stay safe. Trading Standards approved businesses To find Trading Standards approved businesses check: Finding the right trader from Buckinghamshire… Contents help with housework find local services equipment and gadgets keep your home warm and energy efficient make your home safer and easier to use Finding it hard to keep your home clean, safe or warm? You can get help with housework, small repairs, home adaptations…

directly, but the team will usually also ask for a referral from a doctor or nurse involved in the patient’s care. Find your local hospice or visit Hospice UK . Hospital The person you care for may suddenly become unwell and need tests or treatment. They may be referred to hospital by their GP… of care that you might give at home, such as help with washing and dressing, and providing meals. Care homes usually offer long-stay care, but they may also offer short-stay or respite care, giving you a break from caring. A nursing home is like a care home, but there are qualified nurses on duty… Care at home  The person you care for may prefer to die at home or the home of a family member so that they can be with the people who love them in a familiar environment. As a family carer, it is important to discuss this with them and their GP and how it might work in practice. Some questions…

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 of them: If the person you care for is at home then the primary health care team at their local surgery or health centre will be responsible for their treatment. This will usually include their General Practitioner (GP), practice nurses, district nurses, and health visitors. GPs can refer to specialist doctors such as oncologists, haematologists, and geriatricians, as well as palliative care specialists. The person you care for’s GP will be responsible for their medication and care at home and can tell you and the person you care for about your local hospice and arrange a visit…

you like this to be in your own home, at the hospital or hospice, or at the local social care teams office? Prepare for your carer’s assessment by thinking about what you want to cover and discuss with the assessor. Be honest and realistic about the impact of your end of life caring role…. As long as your life is affected in some way by your caring role you are entitled to an assessment. If there are other people in your family providing support to the same person they too may benefit from a carer’s assessment. A carer’s assessment isn’t rationed to one per cared for person. If you… or charge for services or support to you as the carer. Things to think about Consider how you would like the assessment to be carried out. Do you want a separate conversation with the assessor away from the person you care for, so that you can be frank about your caring role? Think about who else you…

but it can also come from a professional e.g. your GP, the hospital, a consultant, community nursing team, provided it is with your knowledge and consent. The team at Christopher’s then assess the needs of your child and, after obtaining your written consent they will gather further information about…. Home If you choose to care for your child at home, you should be fully supported to do this. You should be able to have home visits from paediatric nurses (who care for children) when you need help, at any time of the day or night. You should also be offered advice whenever you need it (this might be over the phone) from a doctor specialising in palliative care. Home visits from a palliative care professional to manage your child’s symptoms. Practical support, for example equipment to give oxygen and medicines to your child, medicines to store at home (and training in how to store them) so…

for information anyway. Often this information is inaccurate and can lead to unnecessary worry and anxiety. Your child may want to protect you and avoid raising the subject despite wanting to talk about it. Your child will take the cue from you about whether they can talk about their concerns… opportunities for your child to ask questions when they feel ready. Where possible it is helpful to have both parents available to talk to your child or perhaps another family member such as a grandparent or someone else close to the child. If your child is in hospital or a hospice you can ask staff… condition, as this requires your other children to keep secrets. Together for short lives has some wonderful information on this subject. There are a range of sources of emotional support for your child and your family: Spiritual caregivers from the appropriate faith for you. If you…

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…

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… years old tying in with the Year 9 annual review. The age at which your child enters adult services is likely to vary depending on where you live and your circumstances. Each service may have a different age when they transfer care from children to adults. Some children will access aspects of adult…, health and social care agencies will consider them an adult regardless of whether they are able to make decisions for themselves or not. If your child has the mental capacity to make decisions for themselves it is important that you recognise that there will be a move away from parent led decision making…