You may get a diagnosis of a serious illness, long-term condition or disability. This will include a prognosis – the doctors’ best understanding of what will happen to your child. This may include the news that your child will not live as long as a typical child born at the same time. Coming to terms with a significant diagnosis like this can be very difficult.

A long-term condition may require long-term treatment. This may mean staying in hospital for a long period of time, or returning regularly to hospital for treatment. This is not as unusual as you might think. According to the National Institute of Clinical Excellence (NICE), there are 1.7 million children and young people in England with long-term conditions. The most common of these, according to the Royal College of Paediatrics and Child Health (RCPCH) are asthma, epilepsy, diabetes, cancer and disabilities children are born with.

If your child needs long-term treatment, you will be told this when you get your child’s diagnosis. The type of treatment and how often it will happen should also be explained to you at this point. This will depend on how serious your child’s condition is. This may change if your child’s condition changes but the medical professionals treating your child should set out a treatment plan. This treatment may be in the hospital you got your child’s diagnosis in – or it may be in a hospital closer to home.

It is normal to experience a wide range of emotions if you are told your child needs long-term treatment. You may find yourself grieving for the life you thought your child was going to have. You may be scared for what the future holds. You may wonder if you did anything wrong. You may wonder how your life is going to change and how you’re going to manage. This is all normal.

If you are finding it hard to cope, ask if your hospital offers psychological support to parents. Ask your bedside nurse or get in touch with the hospital family support team (if your hospital has one). If you are in one of the UK’s children’s hospitals, you can find a directory of hospital facilities here.

You may also find the support of non-medical teams helpful. Many hospitals have Play Teams, who provide play activities for inpatients, either in the playroom or at the bedside. They will help prepare your child for procedures using play therapy, enabling children to act out their anxieties and develop ways of coping. You may also find Nursery Nurses and Family Liaison Teams helpful. Their jobs mean they often focus more on families in hospital and can give more broader support. Some parents find it helpful to keep a memory book or scrapbook to help them process the experience, and have something to share with their child when they are older.

You are not alone. Whatever the reason for your child’s long-term treatment, there will be others who have experienced a similar path. You may find it helpful to get in touch with charities or groups which support families of children with the same condition.

Looking after yourself is even more important if you know you are going to be in hospital often or for a long period of time. See our information on ‘Looking After Yourself’ for suggestions from other parents on how to protect yourself from burnout.

You can also access support through your GP and through a number of specialist charities, including Contact, Action for Children, and Scope. Mind and The Mental Health Foundation (leading mental health charities) have tips on looking after yourself.

• Mind: tips on supporting yourself while caring for someone else

• The Mental Health Foundation: looking after your mental health

The Samaritans work to make sure there’s always someone there for anyone who needs someone. They are always at the end of a phone if you need to talk. You can call them for free, from anywhere in the UK, on 116 123.

Don’t be afraid to ask for help.

You might find it difficult to share a serious diagnosis with wider family and friends. If you do, take a look at our information on Managing Family and Friends. Some friends and family members will want to support you but may not know how. Telling them what you need or want will help them help you. Some will be unable to cope and may distance themselves from you. This can be upsetting. Focus on your friends and family members who are there for you.

We also have information on Supporting Siblings, who may also find a serious diagnosis difficult to understand.

Our Further Support page has more information on organisations which support children with long-term conditions, and more information on whether you could get additional support as a ‘carer’.

If you know you are likely to be going into hospital on a regular basis, or your child is now more likely to need an emergency admission, think about packing a hospital ‘grab bag’ to make sure you and your child have the necessary basics for hospital. You may find it useful to include

• pyjamas,
• clean underwear,
• toothpaste and toothbrush,
• shower gel,
• shampoo.

Hospitals can be very dry environments so you may find body and face cream, and lip balm helpful too. Dry snacks can be useful. They keep for a long time and don’t need to be kept in a fridge.

Being in hospital can also be expensive, particularly if you’re going in and out a lot. You can get help with transport costs. We have more information on broader help with financial costs in hospital here.

Many conditions only require treatment for a specific period of time, after which children are discharged. Many parents have mixed feelings about ending long-term treatment, particularly if the treatment has been going on for a long time and/or the treatment was for a very serious condition. This is normal. Parents talk about feeling relieved that the treatment has come to an end but also feeling scared living without the medical support they have become used to.

Many parents also find the abruptness of treatment ending difficult to process. You may have found yourself counting the days to the end of treatment and still find it hard to come to the end. You are likely to be offered some ongoing support for a period of time, to help you adjust. Many hospitals offer continued access to nurse specialists or doctors who you can call if you have a question. If you are not, you can ask for it. There are no stupid questions about what you and your child can or should do after long-term treatment. If you have been in hospital for a long period of time, particularly if your child has been having specialist treatment, you may be offered the opportunity to ‘step down’ to a hospital closer to home before you go home permanently.

Your friends and family may be focused on the good news – that your child is now considered medically well – and may find it hard to understand why you are finding it hard. Remember, however you feel about the end of long-term treatment is valid and you have a right to expect your family and friends will respect that. You may find it helpful to be clear with them about how you feel and why, so they can support you – and draw clear boundaries for those who do not.

Once a child has been discharged from long-term treatment, it is still important that you keep records, for example clinic letters and discharge summaries. While it is not very common, conditions can come back, even after discharge. Previous long-term conditions can also have an impact on new medical issues in the future.

As children get older, they may also ask questions about what happened to them and it is important that they understand their medical history. Showing them their clinic letters and discharge paperwork may help. You may also find it helpful to take photos of their key medical staff for them to look at if they want to.

Going back into hospital for an unrelated issue, or an issue with another of your children, once you have been discharged can be difficult. You may feel like you’re over-reacting. You may feel like you are more scared than you ‘should’. You may feel triggered by a smell or a sound. This is normal. Past experiences inevitably affect your reactions. To help you cope, you may find it helpful to explain your previous experiences to the medical professionals caring for your child so they can work with your concerns. If you find this hard, you can show them our information for medical professionals.