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This booklet is designed to give you information you may find useful during your child’s cancer journey. Your Key Worker during your child’s treatment
is _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _, supported by her colleagues from within the community team.
Ongoing care during treatment
The Community Nurses are able to come to your home to stop you having to visit the hospital all the time. They can visit to:
• Take bloods
• Check Hickman Line site
• Flush Hickman line
• Check on general health
• Administer medication/treatment
• Discuss any problems
Information obtained during visits enables us to:
• Keep your child’s doctor updated
• Decide if your child needs reviewing in Hospital
• Adjust their medications
• Manage symptoms or complications
• Decide with you whether we need to discuss further management with Oxford
• Arrange any care or treatment required
• Decide whether more bloods are required later in the week
All blood test results are reviewed by the teams at Milton Keynes and Oxford. A member of the community team will phone you with the blood results and inform you of any treatment changes that are necessary. You should record the results in your Shared Care Folder. We will show you how to do this.
Your child’s care will be shared between both sites. Oxford being the Principle Treatment Centre and Milton Keynes being the Paediatric Oncology Shared Care Unit (POSCU).
Paediatric Assessment Unit (PAU)
Your child has ‘Open Access’ to the hospital known as ‘Red Box status’ throughout his/her treatment. This means if you are concerned about your child’s health or wellbeing you can contact Ward 5 or PAU for advice. Both units are open 24 hours, 7 days a week. This arrangement continues until six months after the end of your child’s treatment. Should your child become ill, you are advised to contact PAU, Ward 5 or the community team, ask to speak to the nurse in charge. Phone numbers are on the back of this book. You will be asked to bring your child to PAU for an
assessment and if necessary your child will be admitted to Ward 5.
Admission to Ward 5
If your child needs to be admitted to Ward 5 with febrile neutropenia, line infection or any other complaints you should expect your child to stay on the ward for at least 48 hours (usually at least 24 hours after any temperature has settled). Your child’s bloods, culture results and progress, will determine how long your child will need antibiotics and their length of stay on the ward. Your child will be nursed in a side room. These rooms have a small fridge where you can store your child’s food of choice. You can ask the play specialist for separate toys saved for oncology patients. One parent can stay overnight. Ward 5 has open visiting for parents, but friends and family are asked to come between 2 and 8pm. This allows your child (and you) to get some rest. The ward will be flexible if requested. The ward staff will ensure that you are familiar with the ward routine and environment.
Paediatric Day Care Unit – PDCU
If your child does not have a Hickman line or a Porta-Cath, then weekly blood tests are taken in PDCU or community nurses will arrange. The Day care Unit uses an appointment system. Some other tests, investigations and treatments are also carried out in this unit You will also be asked to attend Milton Mouse Unit for chemotherapy; these clinics are held on Wednesday afternoons.
Milton Keynes offer free parking for oncology patients, nursing team can validate your parking tickets.
Long-term follow up
We try to have as many appointments locally as possible. For the first year children are seen 1-3 monthly and then less frequently in the following 4 years. A haematologist / Oncologist from Oxford visit Milton Keynes every three months to hold a local clinic reducing the need to travel to Oxford. Other clinics you may be asked to attend are:-
• Other local multidisciplinary support services
These clinics are held in Oxford or Milton Keynes. We are here to help you through your child’s cancer treatment as much as possible and want to work with you in partnership. Please do not
hesitate to speak to us about any of the support services mentioned in this leaflet.
Paediatric Dieticians are available at Milton Keynes. They can provide guidance, support and advice regarding diet and health. If you or any professional have concerns about your child’s dietary
requirements, a referral can be made by the Community Nurses or ward 5 staff.
Local services are available. Referral can be arranged if your child requires extra help during treatment or following surgery. The Visiting Community nurse, Ward Staff or your Health Visitor will be able to make referrals to these services.
Psychological and Social Support
After diagnosis a CLIC Sargent Social Worker from Oxford should be in touch. They will meet with you face-to-face to assess your family’s needs. This could be at your home or in hospital. They can apply for a CLIC Sargent standard grant on your behalf; provide benefits and other practical information, and signpost you to other services. Many children benefit from the opportunity to
explore how they feel about their illness, its effects upon them and how the treatment affects their life. You can discuss any issues with the Community staff who will be able to arrange support either via Oxford or our local Child & Adolescent Psychiatric Service.
This service is available via Milton Keynes Orthotic Department. Referral can be made from our paediatric team. Christos Hair Salon in Newport Pagnell also offers a Wig Service. Please speak to Community team.
Your child should continue to see the Family Dentist as normal but a referral to the Hospital Dental service can be made if necessary.
Spiritual and Pastoral Support
When a child has a serious illness this will often raise questions for them and their family about the future, their hopes and fears. This is perfectly normal and sometimes it helps to have someone to talk to. You can ask the community staff or ward staff if you want to see a Chaplain or a specific religious leader. There is also a Chapel in the Hospital which you can visit. The chaplaincy
services do offer support that is non religion based.
Children with Complex Needs Team
This team of community nurses are specifically trained to look after children with more complex care needs in Milton Keynes. At some point during your child’s journey it maybe necessary for this
team to be involved in care.
MK Kids with Cancer
A family support group is held on Saturday afternoon from 2-4pm alternate months at the Moorland Family Centre, Beanhill. This is run voluntarily by a couple of experienced children’s oncology nurses. It is an opportunity to meet other families whose child is going through cancer treatment or has completed treatment. It is an informal gathering. The Community nurses can inform you of those events.
The Macmillan Cancer Information and Support Centre
The service is based at the Macmillan unit at Milton Keynes General Hospital. Our lead Oncology Nurse in the children’s community team is supported by Macmillan. They can make an appointment with MK Citizen Advice Bureau. Please speak to one of the Community Nurses if you want to access their support.
These websites will also provide links to other sites which you may find helpful.
Milton Keynes Consultant:
Consultants: Dr Aye and Dr Mohammed
Secretary: Sandra Davis
Tel: 01908 996501
Children’s Community Nurses (CCN):
Working hours: Mon- Fri: 08.30-16.30. Sat: 09.00-12.00. Tel: 01908 996521
Paediatric Assessment Unit, Ward 4 (Open 24hrs): Tel: 01908 996368
Ward 5: Tel: 01908 996377. Ask for Nurse in Charge
Day Care Unit: Working hours: Mon- Fri: 08.30-16.30. Tel: 01908 996356