• Reference Number: HEY-389-2023
• Departments:
• Last Updated: 3 July 2023

Introduction

This leaflet has been produced to give you general information about the services we provide for children with cancer. Most of your questions should have been answered by this leaflet. It is not intended to replace the discussion between you and your doctor, but may act as a starting point for discussion. If after reading it you have any concerns or require further explanation, please discuss this with a member of the healthcare team who has been caring for your child.

What is shared care?

Shared care is simply that! Sharing the care with the Principal Treatment Centre (PTC) The PTC is Leeds Teaching Hospitals. Therefore all of your care will be co-ordinated by Leeds.  However, if your child becomes unwell and requires hospital support, such as fever, line infection or blood product support, then this will be managed at a Paediatric Oncology Shared Care Unit (POSCU).  The POSCU for your area is Hull University Teaching Hospitals.

All treatment will be discussed with the Children’s Oncology Doctors in Leeds at least once per day with a plan of care for your child while they are an inpatient in Hull.

During your stay on the ward Dr Ashwini Kotwal (Consultant with Special Interest in Oncology) and Joanne Lyons (Children’s Oncology Clinical Nurse Specialist for Hull) will visit you if possible and make sure your stay is as pleasant as it can be.  They will also make sure Leeds Guidelines are followed to provide any additional support during your stay.

 

Key Professionals

During your inpatient stay in Hull, you will be expected to see a number of health care professionals.  This may include, Doctors, Advanced Nurse Practitioners, Nurses, Specialist Nurses, and possibly pharmacy.  Depending on the reason for admission other health professionals may be needed.

Your Doctor and Nurse for each shift will introduce themselves to you.

The role of the children’s Clinical Oncology Specialist Nurse

Every Child diagnosed with cancer will have a keyworker based in Leeds. The Hull keyworker is Joanne Lyons and she works closely with your Leeds keyworker on following aspects:

• Providing information, education and advice about your child’s cancer diagnosis, treatment plans and any associated side effects.
• Teaching any skills that you or your family might need to care for your child at home.
• Work in partnership with colleagues in the community and other agencies to provide care for your child in their own home. This might include other professionals such as children’s community nursing services, district nurses, health visitors, physiotherapists, occupational therapists and GP’s.
• Maintaining and promoting school attendance and education. When the time is right we will contact your child’s school to provide specialist medical and nursing advice and support so that they can safely return to school.
• Home visits for any support and advice, blood investigations and administering low dose chemotherapy as required.
• Chase any investigations taken locally
• Arrange any inpatient admissions at the POSCU
• Being a point of contact for telephone advice and support and to help co-ordinate your child’s care.

Golden Hour

When you first come to the ward, one of our doctors will examine your child, and make a plan for any investigations or treatments that are needed in conjunction with Leeds Hospital; this plan will then be explained to you.

Life on the ward

Woodland Ward has a mixture of single rooms and four / six bedded bays. It is for children up to 16 years of age. Sometimes Woodland Ward will take children aged up to 16.

All our oncology children are given single bedded cubicles to reduce the risk of cross infection. Your cubicle should have an en-suite attached to the room, however some rooms do not have this facility. If this is the case, then a commode will be offered.

When you first come to the ward, one of the nurses will show you around the ward, ask you about your child, their usual routines, and explain what is happening.

Every day your child will be looked after by one of the nurses, who will introduce themselves to you. Please ask us if you are not sure who it is. There is always a Nurse in Charge on each shift you can speak to if you cannot find your own nurse, or you want to ask specific questions or raise any concerns.

Each morning there is a Ward Round, when all the patients are seen by one of our ward doctors. Your child’s care will then be discussed with the Consultant of the week, or with your own Consultant in Leeds. You can ask the doctors any questions you have about your child’s treatment, or anything that you do not understand.

Parent’s room and beverage bay

There is a small parents’ sitting room with a kitchen with a hot drinks facility, microwave, and fridge. A limited supply of milk, tea and coffee is provided daily by the ward for you to use. Please label any of your food with name and date to be put in the fridge.

There are a number of different cafes, dining areas and vending machines within Hull Royal Infirmary. There are vending machines for cold drinks on alternate floors of the tower block. Situated on the ground floor is Costa serving hot, and cold drinks. Hot and cold sandwiches, as well as cakes. WHSmith also sells sandwiches and hot drinks. A similar style snack bar is also located on the ground floor of the Women and Children’s Hospital and the Eye Hospital.  The biggest choice for food is the main restaurant on the 1st Floor.

Parent’s Showers & Toilets

There is a parents’ shower and toilet down near the cubicles on the ward. Please ask the nurse if you require any towels. Toiletries are not provided.

Television and Entertainment

Each bed has its own television. These are free to watch up until a set time on the evening. WIFI is currently available to parents and children.

Parking while you are on the ward

Parking is available for parents. You can obtain a month’s permit for £20. Please ask the staff on the ward how to obtain these.

Staying on the ward

Because of the limited space only one person can stay with children at night time. A fold down bed is provided. We encourage a parent or close family member to stay if possible, but we understand that sometimes this is difficult, and that some older children may be fine on their own. Please let staff know if no one will be staying with your child. It is not possible for anyone under the age of 16 years to stay with

your child. Parents’ beds must be folded back and put away in the morning to allow the bed area to be cleaned.

Visiting is open access to both parents. 1 other visitor can visit between the hours of 2.00 – 3.00 pm and 6.00 – 7.00 pm

Medication

Can you please bring in any regular medication to the ward, as depending on the time of admission it may not be possible to get them from pharmacy quickly! The cubicles have a lockable medicine cupboard in them. You will be able to keep the medication in the room and sign a self-medicating form. You must tell the staff when you have given the medication so they can document it on the drug card.

Meals for the children

We have a ‘Dinner Lady’ on the ward who is here just to help with meals in hospital. She will meet you when you first come to the ward, and find out what sort of things your child likes to eat. If you have not met her yet, ask us to introduce you! If your child has a special diet, please let us know. Menus are given out and collected in the morning; please try and remember to fill these in for your child. We also offer snacks during the daytime. The dinner lady will usually be around during the day offering small snacks.

Breakfast 8:15 and 9am

Lunch 12:00 – 12:45

Tea 5pm – 5:30pm

Ideas for hospital bag:

• Clothes & Pjs
• Toiletries
• Childs medication
• Leeds treatment chart
• Magazines
• Phone charger
• Activities for child
• Childs comforter
• Spare pen
• Favorite snacks
• Loose change for vending machines

This is just a few ideas which might help you during your stay.

This leaflet was produced by the Paediatric Oncology Department, Hull and East Yorkshire Hospitals NHS Trust and will be reviewed in July 2026.

General Advice and Consent

Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.

Consent to treatment

Before any doctor, nurse or therapist examines or treats your child, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to your child. You should always ask them more questions if you do not understand or if you want more information.

The information you receive should be about your child’s condition, the alternatives available for your child, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:

• you must be able to give your consent
• you must be given enough information to enable you to make a decision
• you must be acting under your own free will and not under the strong influence of another person

Information about your child

We collect and use your child’s information to provide your child with care and treatment. As part of your child’s care, information about your child will be shared between members of a healthcare team, some of whom you may not meet. Your child’s information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.

We may pass on relevant information to other health organisations that provide your child with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your child’s doctor, or the person caring for your child.

Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about your child. For further information visit the following page: Confidential Information about You.

If you need information about your child’s (or a child you care for) health and wellbeing and their care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.