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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 understand. Ask for an interpreter if necessary. Ask for information about support groups and available emotional support for yourself and your family in your local area. Consider who and how you are going to tell others outside the immediate family, for example school, wider family and friends. How…

to contact them and making sure relevant professionals know how to contact you How to look after yourself and your family through the provision of emotional support, spiritual and cultural support, transport, training and very importantly short breaks. Things to think about Make sure an appropriate… within the first 3 days of discharge. Make sure other children in your family are not forgotten. They will also need lots of support to understand what is going on at such a difficult time. …

be benefit from palliative care. The team can also ensure an integrated ongoing approach to your child’s treatment and care as well as family support by liaising effectively with local community support. Children’s Hospice As well as providing specialist nursing care and short breaks on site (often 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… reconsider a further referral if their condition changes or new information becomes available. Similarly, there is a regular review of each child they support. The referral process can take a minimum of two weeks unless it is an emergency in which case the referral can be dealt with in a matter of hours…

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… people and out of hours services. When your child’s review will be carried out and how to ask for a review earlier if you feel a revised care plan is needed sooner. Things to think about Make sure you are consulted about which services and what type of support you want included in the care…

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…. Keep your child’s school informed of your child’s health condition and any absences. Explore with the school how to help your child keep up with school work and any additional support they might need. Ensure the schools of any other children in your family are aware of the family situation so that adequate support can be given to them as well. …

You may need specialist aids and equipment to care for your child. You and your child may be assessed by an Occupational Therapist from your primary care trust or children’s team who can inform you about the options and services open to you. Any aids and equipment should be included in your Child and Family Care Plan. If needing specialist continence aids for example nappies, talk to the health visitor or children’s nursing team for advice. Education and Resources for Improving Childhood Incontinence (ERIC) Helpline service provides support for children, parents and professionals who… the vital equipment, support and life skills they need to reach their full potential.…

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 to ensure smooth transition. Young people and their family are supported in adult services with a multi-agency team and given honest and realistic advice about what they can expect in terms of how their care and support needs will be met in the future. Partnerships working between children’s and adult… hospices are beginning to play more of a role with young adult people, they may not offer the range of support, services, therapies and short breaks that you are used to. Make sure you have parallel plans that will both help meet your child’s needs and wishes should their condition deteriorate as well…

using the details above. Once registered, families will automatically receive the discount card in the post. Parent Carer Break Grants are payments made to support parents who have a disabled child under 18 living in Surrey, who are not currently receiving services from Surrey County Council Children’s Services and don’t have a social care worker. Parents cannot apply directly themselves, but anyone working with a family can apply on your behalf – such as: a carer’s support worker at Action for Carers Surrey, teachers and Home School Link workers, nurses and health visitors, Children’s Centre managers, Early Years Support coordinators – having completed either a Child Assessment Framework form or Carer’s Assessment with you. Parent Carer Break Grants can be used to fund a family holiday, a short break for parents, a training course for a parent, childcare to give a parent a break…

will feel most comfortable. You also need to be clear about what outcome you want to achieve from talking to a trusted person. Is it emotional support you are seeking, practical support, or both? Do you just want to be listened to?…

Local hospice The person you are caring for may have a key professional at a local hospice and they will understand how you are feeling as they meet many young carers. If you are caring for a sibling Christopher’s Children’s Hospice offers support to the whole family including sibling groups… carers which give you an opportunity to meet other young people in a similar situation. They may also offer fun days and evenings out including someone there to listen to your worries. They can also offer information to the rest of your family for example financial advice. Social care support Young… teaching support Allowing you to keep your mobile on in class in case of emergencies The Internet There are lots of charities and organisations that can help provide you with information about the illness of the person you care for and an opportunity to talk. Some of these charities have helplines…