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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 as…

As a parent our natural instinct is to protect. This may mean you want to delay talking to your child about their diagnosis and prognosis for as long as possible. However, research has shown that it is better to have honest and open conversations as early on as possible for the following reasons:…

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…

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…

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 …

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 ye…

Surrey Short Breaks for Disabled Children funds voluntary organisations and SEND schools to provide short break services, including after school clubs, holiday schemes, home-care and more. The Surrey Children’s Disability Register is a voluntary register for a disability or impairment aged 0 to…

If you are under the age of 18 and providing care to a terminally ill relative then you are a ‘young carer’. If you are between the age of 18 and 25 then you are a ‘young adult carer’. Both young carers and adult young carers take on practical and emotional caring responsibilities that would norm…

All carers need to recharge their batteries including young people! It is so important when caring for a person in your family approaching the end of life or if coping with bereavement that you look after yourself too. It is important not to feel guilty about it. Do something you love So what he…

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…