Together for Short Lives
Call the Helpline 0808 8088 100

Diagnosis or recognition

Coming to terms with the news that your child has a life-limiting or life-threatening medical condition is extraordinarily difficult.

If your child’s diagnosis was made recently you may find that things feel overwhelming at the moment. There is a lot that you may be worried about, such as what the future holds for your child and how you can help them to live as happy and “normal” a life as possible, how you can talk to your child about their diagnosis, and even how you yourself will cope.

While there are no easy answers to these questions there are places that you can find support and advice. In addition to all the information available here on our Support Hub, our free helpline is available on weekdays between 9AM and 4PM on 0808 8088 100, and an online parents support group you can join. There are also many other charities and services that may offer support – our service directory will help you find one in your local area.

There is so much to think about when you have found out that your child is seriously ill that it is difficult to know where to start.

One of the most important things to think about is how you will talk to your child about their diagnosis. Instinctively you may feel you want to avoid this for as long as possible to protect your child, however research suggests it is often useful to begin having conversations with your child early in the process. You can find suggestions and practical advice about talking with your child about their life-limiting condition here.

If you have other children, it’s important to make sure their needs are not forgotten during this stressful time. They will no doubt have lots of questions and will need time and support to understand and come to terms with their brother or sister’s condition as well. Our factsheet on supporting your other children’s emotional wellbeing is a good place to start.

Talking to doctors and medical teams

The diagnosis of your child’s illness might have happened early in the course of the illness, it may happen years after your child first becomes poorly, or for some conditions an exact diagnosis may never be reached. Whatever your exact experience, the checklist below is useful if you are preparing for a key medical appointment or reflecting on a diagnosis that has already taken place.

  • Make sure that your medical team makes time available for open and honest face-to-face discussions, with the opportunity to ask questions in a private room.
  • Ask for copies of any letters written by the medical team about your child, so you always know what’s going on.
  • Try to write down questions you want to ask your doctor whenever they occur to you, to take along to your next appointment. Ask your doctor to write down the answers so you can look back at them.
  • A partner, relative or friend should come with you to offer support, so you are not alone at the appointment.
  • Ask for extra written material to supplement your discussion, so that you can review it after the appointment.
  • Information should be conveyed in a language you can easily understand, ask for an interpreter to be provided if necessary.
  • Ask for information about how you can find other services or support groups that might provide emotional support for yourself and your family
  • If your child was diagnosed within the hospital setting, you should have an agreed transfer plan involving the hospital, community services and yourselves. Make sure you have all the resources and equipment your child needs before leaving hospital.

Get support

Whatever the exact circumstances of your family and your child’s illness, we know that this is one of the hardest things that anyone has to face. Please do remember that we are here to help you find support, so please, if you have any questions, don’t hesitate to send us an email or leave a message on 0808 8088 100 to speak to one of our team.

Frequently asked questions

What’s the difference between a life-limiting and life-threatening condition?

Life-limiting conditions are those for which there is no reasonable hope of cure and from which children will die. Some of these conditions cause slow deterioration over time rendering the child increasingly dependent on parents and carers.

Life-threatening conditions are those for which curative treatment may be feasible but can fail, such as cancer.

What is children’s palliative care?

Children’s palliative care is an active and total approach to care, from the point of diagnosis or recognition, throughout the child’s life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for the child or young person and support for the family. It includes the management of symptoms, provision of short breaks and care through death and bereavement.

What happens during an assessment of my child’s needs?

As soon as possible following diagnosis, your child’s needs will be discussed with you and assessed by a team working with you to ensure that your child gets the ongoing care they need and that your choices are taken into account. This is often called a ‘multiagency needs assessment’.

A needs assessment is there to provide you with an opportunity to raise concerns, and for the full range of needs for your family to be explored. The ultimate goal should be that your child and your whole family receive the help and support they need.

Another main purpose is to draw together professionals from various teams and settings in the one assessment so you don’t have to have various assessments for different professional teams (for example, community nurses, education and consultants).

The key objectives of an assessment should be:

  • To gather factual information about your family
  • To explore your family’s concerns (including extended family)
  • To assess the full range of medical, nursing, practical, social, educational, psychological and spiritual needs
  • To explore options for meeting these needs, according to what is available in your local area
  • Result in an agreed care plan

A multi-agency assessment of needs should cover the needs of the whole family, and should involve the following aspects:

  • Pain and symptom management
  • Care needs
  • Therapies
  • Emotional support
  • Information
  • Short breaks
  • Education & play
  • Transition
  • Information
  • Financial issues
  • Sibling well-being
  • Home assessment
  • Aids & equipment
  • Transport

There’s no name for my child’s condition, how do I get the help I need?

You may have been told that your child might not live to adulthood, but not have been given a specific name for their condition. Because there are so many rare and complex childhood conditions, it is not uncommon for this to happen. Even so, it can make you feel even more uncertain about your child’s future and can make you feel isolated. SWAN UK (Syndromes without a Name) is a support network run by the charity Genetic Alliance UK offering support and information to families of children and young adults with undiagnosed genetic conditions.

Even without a named diagnosis, you are entitled to support which will be based on your family’s needs, not your child’s diagnosis.

How can I tell my other children about their brother or sister’s condition?

Many parents worry about how they can share their child’s diagnosis with siblings. You will probably be worried about how they will react. You may want to protect them from the truth. You might not feel emotionally strong enough to say the words you need to, or worry about crying in front of your children. You may be concerned about using the right words to describe what is happening to their brother or sister.

Being completely open may be difficult, but it can help prevent misunderstanding in the future. It also builds the trust between you and your children.

You might not always know the answers to questions your children ask. But it’s ok to be honest and say you don’t know.

There are lots of organisations and support available. To find out more you can call the Together for Families helpline on 0808 8088 100 or contact Sibs, a specialist organisation for people who grow up with a disabled or life-limited brother or sister.

If you are in touch with your local children’s hospice, you could talk to them about explaining things to your children. You could also talk to your GP or another professional who is supporting you.

Read more on this topic on our family factsheet, Understanding Sibling Needs.