Once you have been admitted to hospital, your child will get two name bands with their name, date of birth and hospital number on them. They will be expected to wear both of these while they are in hospital.

If you are expecting a stay of one or more nights, your child will be admitted onto a ward. Wards usually have names but may be referred to by their type (e.g. PICU – Paediatric Intensive Care Unit, HDU – High Dependency Unit).

You will get a named bedside nurse. This is the person who will care for your child while they are in hospital. Bedside nurses change shifts twice a day, usually around 8.00am and 8.00pm. During the first and last half hours of a shift it is difficult to communicate with the nurses as they are very busy writing up their notes and handing over to the next bedside nurse, so try to avoid having any important conversations at this time.

Ward round happens every day on the ward. This is where day-to-day medical decisions about your child are made. Ward rounds are usually led by a senior doctor, called a consultant, supported by junior doctors and senior nurses. They are sometimes led by an experienced junior doctor who is preparing to become a consultant. Your bedside nurse will tell the ward round about your child. You may add anything you think the doctors and nurses need to know about your child, or ask any medical questions. You may not be invited to speak but you have the right to. You may find it helpful to discuss your questions or thoughts with your bedside nurse beforehand.

You may be visited by specialist doctors and other specialist medical professionals, such as physiotherapists or speech and language therapists. This will depend on what your child needs.

Being in hospital can feel overwhelming for you and your child. It is ok to say no to medical professionals or negotiate a better process. For example, if your child is sleeping, they may be able to come back later, rather than wake your child up. As far as possible, try and stick to your normal routine with your child while you are in hospital; and try to give your child opportunities to exert some control over their schedule.

Don’t worry if you can’t be in hospital all the time, or even everyday. Your bedside nurse is there to make sure your child gets the care they need, and they can arrange for the hospital school to manage your child’s education and the Play Team to keep them occupied.

You will also be asked to consent to any procedures or investigations which the medical professionals feel your child needs. This can be a frightening process, as a doctor will explain all the possible risks of any procedure. Even relatively minor procedures can carry serious-sounding risks so it’s important that you feel as comfortable as you can be with this process. You can find out more here: NHS Children and Young People Consent to Treatment.

Sometimes children are moved between hospitals. This is called a transfer. This can happen if the hospital they are in doesn’t have the specialist staff or equipment to manage their care – and the medical professionals caring for your child should explain to you why the transfer needs to happen. Transfers are usually done in a specialist ambulance with a specialist medical team. You will be able to go with your child and you will usually be accompanied by your bedside nurse who will handover to the new hospital. This is not usually a totally smooth process. You will be asked all the same questions you got when you were first admitted all over again by the new hospital. The new hospital also will often look to you to fill in the blanks in their records or knowledge.

At some point, you will probably want to know when you will be able to go home. For more information about this see our Going Home page.

As a parent or carer, you are an important part of your child’s care. You know them better than anyone else and you will manage their care when they are discharged (for example, if they go home with medication or need to come back for a check up). You need to understand what is going on, and speak up if your child is unhappy or uncomfortable, or if you see something that doesn’t look right.

It’s ok to not feel confident in hospital or when talking to medical professionals. It’s very common to find some people easier to talk to – and trust – than others. Many parents/carers find that they have a better relationship with their child’s bedside nurse than they do with consultants.

When someone comes into your child’s bedspace, it’s helpful to start with a few simple questions:

• Who are you?
• What do you do?
• Why are you here?

This gives you the context you need to understand what they then say. If you’re finding it difficult to understand, get the person you are talking to to write down key information or take notes as you’re talking to them.

If you’re finding it very complicated, ask them to draw a diagram. Ask when you can ask them more questions. If you think of any, write them down. Make sure you know how to explain it to your child.

If you’re still struggling to understand – ask them how they would explain it to your child. And always give your child the opportunity to ask any questions they want.

There are phrases you can use to help you get what you need from medical professionals:

• Can you help me understand…
• I know you’re very busy. When would be a good time to talk to you about…

Before the medical professional leaves, ask them:

• Is there anything you expected me to ask, which I haven’t asked?
• If this was your child, what would you ask?

If there’s something you’re worried about, be direct with the person you are talking to. The answer may not be what you were hoping for, but you will have an answer. Once you have the information, you can decide what to do about it. Your child’s medical team will have that information and will be making decisions based on it, so knowing what they know is helpful. If you don’t know who the best person to speak to is, ask your bedside nurse. If you have lots of questions, write them down and decide which are the most important, so you ask them first.

Medical professionals, especially doctors, do not feel that their job is to give hope. They see their job as telling you what the situation is and what they plan to do about it. They do not promise anything that they can’t guarantee. This means they will focus on anything they see as a problem. They look at an issue and think ‘is this a problem or not?’. As parents, we look at an issue and think ‘is this good news or bad news?’. This means medical professionals will often not give you ‘good news’ (for example, a test result that came back negative) because they have already decided that it’s ‘not a problem’ and so they don’t need to think about it anymore. This means you may have to proactively ask medical professionals to get the answers you need. If you haven’t got an answer, don’t wait and don’t assume it’s bad news.

While you are in hospital, you will be asked to make a number of decisions on behalf of your child. Some you might find easy, such as what your child wants for dinner, but others can be much more complicated, such as making a decision about surgery or deciding between treatment options. Sometimes this will take the form of a verbal question, sometimes you will be asked to give written agreement, such as signing a consent form. You should be given a copy of this form. It is important to keep this as it clearly states what you have agreed to and what the risks of the procedure are. The NHS has more information about ‘consent to treatment’ here.

Depending on the age of your child, they may be deemed ‘competent’ to consent to their own treatment. This means they get the final decision. Young people aged 16 or over are automatically considered competent, in the same way as adults, unless there’s evidence to suggest that they do not have the capacity to consent (such as an intellectual impairment).

Children under the age of 16 can be considered competent if they are believed to have enough intelligence, competence and understanding to fully appreciate what’s involved in their treatment. This is known as being ‘Gillick competent’ (the name comes from a legal case about competence). The NSPCC has more information about being ‘Gillick competent’ here.

If your child is ‘Gillick competent’ and refuses treatment, this can be overruled by a parent. However, if your child is over 16, you cannot overrule their decisions. Parents cannot give consent for young people aged 18 years or over, even if they cannot consent for themselves. However, most children will want guidance and input from their parents or caregiver before making a decision.

If your child is not deemed competent to make decisions, you will be asked to make the decision on their behalf. You may find it helpful to involve your child in this process. Even if your child cannot participate in the discussions around their care, explaining what will happen to them and giving them the opportunity to ask questions will make them more likely to understand and get on board with your decision.

When you – or your child – are asked to make a major decision about treatment, your child’s medical team will usually make a recommendation about which option they think is best ut they will ask you to make the decision. You, and your child (if they are competent), may find the following framework helpful for making decisions:

BRAINS

• What are the benefits?
• What are the risks?
• What are the alternatives?
• What’s my instinct (what’s my gut telling me)?
• What would happen if we do nothing, and for how long?

Sometimes your child’s medical team will make their recommendation seem like it is the only option – or, at least, the only viable option. However, it is important that you feel you have the information you need to make the best decision for your child. If you do not feel you have all the information you need, you almost always have time to think it through and ask the medical team more questions. If you don’t feel confident doing this, look at our section above on ‘How to ask questions and get the answers you need’. 

If you are unsure about making a big decision or feel overwhelmed by it, ask your bedside nurse if your hospital has a psychology team you can talk it through with. You might also find it helpful to talk it through with a friend or family member who understands your situation.

If you disagree with the medical team’s recommendation, you are entitled to ask for a second opinion. This isn’t a legal right but most medical teams will be happy to facilitate this. It is very rare that a request is refused. If there is a specific consultant you want to be involved, you can request their input but they are not required to review your child’s case. You can also pay for a private second opinion.

If a patient or parent refuses to give consent to a procedure the medical team think is necessary, they can be legally overruled, if a court feels that the treatment is necessary and in the best interests of the child.

Before you leave the ward for the first time, make sure you know:

1. what ward your child is on (they usually have names),

2. the ward’s direct phone number, and

3. visiting hours (most hospitals allow parents at any time but restrict visiting for family and friends).

Most hospitals have free wifi. There may be a sign on the ward or you can ask your bedside nurse for the network name and password.

Ask your bedside nurse whether the hospital have any accommodation or whether you can sleep by your child’s bed. Depending on your hospital, they may offer either or both. The hospital may also be able to offer you free car parking. It’s always worth asking.

Many hospitals also offer free parking for parents whose child is in hospital. Ask your bedside nurse what is available to you.

If your child is school age, they will be able to continue their education in hospital through the hospital school. These are facilities which can support children from 5-18 years old, and adapt to their needs. To contact your hospital school, ask your bedside nurse.
You can find UK Government information on hospital schools here.

Most hospitals also have a Play Team, a team of trained professionals who entertain children in hospital, distract them from unpleasant treatments, and help them understand their treatment and/or condition through play. To contact the Play Team in your hospital, ask your bedside nurse.

Many hospitals have a canteen and/or coffee shop, which means you can get refreshments without leaving the hospital. To find out about your hospital’s food options, ask your bedside nurse.

Many hospitals have a charity which supports children in hospital and their families. The support they offer can vary so ask your bedside nurse for the support your hospital’s charity can offer.

If you’re going to be in hospital for a while, and have medical needs yourself, see if you can register with a local GP.

Spending time in hospital might affect some benefits your child is getting. You may also be eligible for financial help while your child is in hospital. See more information on benefits from TURN2US here.

Having a child in hospital can lead to unexpected expenses. If you need financial help while you’re in hospital, there is a patchwork of support available.

Most hospitals offer a range of support to parents:

1. Ask your bedside nurse whether the hospital have any accommodation or whether you can sleep by your child’s bed. Depending on your hospital, they may offer either or both. The Ronald McDonald House Charity and The Sick Children’s Trust provide free ‘home away from home’ accommodation to many families while their child is in hospital. There may be one near your hospital.
2. Most NHS hospitals offer free wifi. There may be a sign on the ward or you can ask your bedside nurse for the network name and password.
3. Many hospitals also offer free parking for parents whose child is in hospital. If you are driving to hospital, ask your bedside nurse what is available to you.
4. Ask your hospital charity if they offer any practical or financial support for parents. We have a list of all main paediatric hospital charities in the UK here. If your hospital isn’t on the list, ask your bedside nurse or search online for your hospital’s name + charity.
5. Many hospitals have a social worker, or a social work team, who offer a wide-ranging social work service to patients and their families. Ask your bedside nurse what your hospital can offer you.

There are also charities and other organisations which work to support families in hospital and, more widely, in financial difficulty:

1. Evie’s Gift gives immediate financial assistance to parents whose children have been admitted to hospital with a life threatening or life limiting condition.
2. Family Action work to free families from disadvantage and social isolation, by supporting families with practical, emotional and financial help.
3. Turn2Us have a grants tool, which allows you to search for grants to support you and your family.
4. NHS England has some advice on coping financially when you’re in hospital.
5. Bliss (a leading charity for premature and sick babies) has more financial information for parents of babies in hospital, though much of the information is helpful for all parents in hospital.
6. The British Heart Foundation has further information on ‘managing finance and benefits when caring for a child’, which includes information on financial help in hospital.
7. If you live in Scotland and your child is in hospital there, you can claim for the costs of travel and food.

If you claim benefits for yourself or your child:

1. Turn2Us have information on what happens to your child’s benefits when they are in hospital.
2. If you cannot manage financially with the money you have when you are in hospital or when you come out of hospital, you can seek advice from a benefits adviser. You can find a local one using the Turn2us Find an Adviser tool.
3. Citizens Advice can help you understand any benefits and/or support you are entitled to, and help you manage your money.
4. The UK Government has a comprehensive list of all benefits you may be entitled to if you have children.

All children under the age of 16 (or 18, if they are in full-time education) get free prescriptions. All children under the age of 18 (or 19, if they’re in full-time education) get free dental care.

Finances can be a real source of stress for parents in hospital but help is available. You are not alone.

Being in hospital with a child who can’t leave their bedspace, or ward, can be very boring – for you and your child! We’ve collected together some ideas for activities you can do with a child who is stuck in bed.

1. Read a book together. If you don’t have any of your own (or you’ve read them so many times you’re bored of them), your Play Team might be able to lend you books. Read for Good is a charity that supplies books to hospitals. You can see if your hospital is part of their programme here.
2. Create an artwork. This can be as simple as drawing an imaginative picture – perhaps what your child wants to do when they leave hospital or a picture to send home to a sibling. If you want to get more adventurous, try stickers or painting. Your Play Team might be able to provide art materials.
3. Try an activity magazine. Whatever your child is interested in, there’s almost certainly a magazine that covers it. Your local newsagent or supermarket should have a good selection for all ages.
4. Decorate your bedspace. Check with your bedside nurse and, if it’s ok, decorate your child’s bedspace. You could even make some of the decorations yourself. If you’re stuck for ideas, fairy lights, paper chains and a cozy blanket are relatively cheap and easy options.
5. Play a puzzle or game. This is a constructive way of engaging children and helping them focus on something that isn’t their hospital routine. Top tip – make sure the games don’t have tiny pieces. They’re too easy to lose! If you don’t have access to any games, try a verbal game like ’20 Questions’ or ‘I Spy’.
6. Write a letter to a friend or sibling. It can be fun for children to write – and receive – letters while they are in hospital, especially if they’re worried about keeping in touch with friends and family.
7. Try a simple craft activity. Giving children something to do with their hands can help distract them from their situation. This also gives children a simple goal to focus on and a sense of achievement when they finish it.
8. Journaling. Journaling can be a helpful tool for older children, giving them a private space to express their thoughts. Journaling can be as simple as a notebook and a pen, though they can get very elaborate, if the author is creative. You could try it at the same time as your child, keeping parallel journals.
9. Make the everyday special. Even something as simple as fancy shower gel or a fun bath bomb can make a daily chore more fun. Creating your own special hospital routines can also help. Maybe sing a song every night before bed or read a special book.

If you can’t be with your child, you can still help them cope. Allowing them to play games or watch something on a phone or tablet can be a useful distraction. Listening to music (on headphones) can be calming and help create a different environment for your child. 

And don’t forget, you can always ask your Play Team for their help. Many have activity packs and books for children, some have DVD players and a selection of DVDs. If you can’t be with your child, a play specialist might also be able to come and spend some time with your child to help keep them amused.