Roger Neilson Children’s Hospice

• Be referred to the CHEO Palliative Care Team prior to their 18^th birthday while RNCH services will extend to their 19th birthday.
• Live in Ontario and have a valid OHIP card. Children and families living in Quebec or Nunavut are eligible while some service offerings may vary based on provincial/territorial guidelines (discussed with families when they are first referred).
• Have a life-limiting illness with a progressive decline in health status
• Be involved with CHEO’s Palliative Care Program
• Be prepared to participate in care planning with the team at Roger Neilson Children’s Hospice

Admissions to Roger Neilson Children’s Hospice are dependent upon the prioritized needs of all children in the program in the following order:

1. End of Life Care
2. Symptom Management
3. Transition from hospital to home
4. Respite Care

Referrals must be from a physician or nurse practitioner involved in the child’s care,

If the child is deemed eligible, a letter will be sent to the referring provider to inform them of the team’s decision. The team will inform the family and child about eligibility for care at Roger Neilson Children’s Hospice.

A referral to the CHEO Palliative Care Team can be sent for any child who could benefit from services. We encourage early referrals so the family can establish a therapeutic relationship with the Team.

Non-urgent referrals can be sent to the CHEO Pediatric Palliative Care Team via EpicCare Link or by fax at 613 523-3617. Referrals from CHEO teams can be sent via Epic.

If the referral is urgent, call CHEO at 613-737-7600 #0 and ask for the Palliative Care physician on call. The team is available 24/7 for urgent palliative care related matters.

Children referred to the CHEO Palliative Care Team may be deemed ineligible for Roger Neilson Children’s Hospice services. If their medical condition changes, they can be reassessed if they are referred again. Please be assured that careful consideration is given to all referrals.

Respite care is 24-hour care for your child at the hospice. The purpose of respite is to allow your family time to rest and rejuvenate and provide an opportunity for ongoing evaluation of your child’s health by the CHEO Palliative Care Team and Roger Neilson Children’s Hospice staff. Respite also provides your child opportunities to play and have fun, connect with peers, participate in activities, and make memories.

There are two categories of respite care.

Pre-booked respite care

Up to 28 days of respite for each calendar year is available to each child.

While Roger Neilson Children’s Hospice staff make every effort to honour these bookings, families must have a contingency plan if these admissions need to be cancelled due to a higher-priority need.

The maximum length of stay is typically two weeks at a time,, outside of the summer. Each child can stay for two holiday weekends per year, and either March Break or the Christmas Holiday. During the summer months, the maximum length of stay is 10 days. Families are encouraged to pre-book these stays up to six months in advance to ensure the desired dates are available. Roger Neilson Children’s Hospice staff understand how important these visits are to each family and will try to accommodate them.

Emergency respite care

Emergency respite is available to children who require emergency care due to a crisis in the family. Requests will be accommodated within 24 hours of receiving the request for a maximum of 72 hours. Extensions may be provided as occupancy and resources permit.

Before the first admission, you must complete and return the Roger Neilson Children’s Hospice intake questionnaire sent by the Admissions and Care Coordinator through MyChart to permit the development of the child’s Roger Neilson Children’s Hospice Care Plan and chart in Epic (the electronic health record)

MyChart is a secure, online patient portal that connects you to parts of the EHR and health care teams. It provides access to your child’s health record and allows you to see medications, test results, appointments, and other valuable information online or via a mobile device. The MyChart access request form can be found online at www.CHEO.on.ca or through the CHEO Health Records department.

For more information and how to register for MyChart, see MyChart/CHEO (https://www.cheo.on.ca/en/visiting-cheo/mychart.aspx)

Admission takes place between 1 pm and 4 pm. The Admissions and Care Coordinator will work with you to schedule an appropriate time. The process may take an hour or so; please plan to be available for this length of time..

You will be asked to unpack your child’s equipment and supplies before you leave.

At the time of admission, the admitting nurse will complete the following admission assessment information:

• Infection prevention and control screening. If your child is showing symptoms of infection, the admitting nurse will contact the Palliative Care Physician for further direction
• Care-plan update
• Medication reconciliation
• Focus of admission
• Consents
• Emergency caregiver
• List of approved visitors
• Demographics update
• Allergy review

For this reason, you must either be present at admission or immediately prior to admission to ensure the necessary documentation is completed and to ensure equipment and supplies are delivered.

Before each re-admission, the Admissions and Care Coordinator will send a message to your child’s MyChart that will include one of the following attachments:

• A Roger Neilson Children’s Hospice intake questionnaire (if the previous questionnaire was completed more than one year ago)
• A Pre-Admission questionnaire (if the previous admission was less than one year ago)

The Admissions and Care Coordinator will work with you to schedule an appropriate time up to 4 p.m. You will be asked to be available to pack your child’s equipment and supplies. If requested, your child may be discharged to the school bus. Equipment and supplies will not be sent to school. Please ensure you have all of your child’s belongings and medications before you leave!!

There is no cost to the family for our services.

If your child attends school during their respite admission at Roger Neilson Children’s Hospice, you must coordinate with your child’s school and the busing program. Please let staff know when your child will be picked up and dropped off from school. In addition, please let staff know what supplies are to be sent to school with your child daily.

Should your child develop an infection while in our care, the staff will contact you to make the necessary alternate care plan. Any child who develops symptoms of infection during their stay at Roger Neilson Children’s Hospice may be discharged so other children staying with us are protected. In cases where you are away during your child’s planned admission, contact information for an identified, capable and accessible alternate care provider is required.

Anyone recently exposed to an infectious illness (measles, tuberculosis, whooping cough, mumps, chicken pox, etc.) or showing symptoms (fever, cough, vomiting, diarrhea, rash) is asked to avoid visiting until the incubation period has passed and/or their symptoms have resolved.

Pack everything your child might need daily except basic linens.

This includes:

• All prescription and over-the-counter medications, including an Epi-Pen if required
• All prescribed or specifically required dietary supplies
• Medical equipment (e.g., respiratory and feeding equipment and supplies)
• Emergency kits (e.g., G-tube, tracheostomy, etc.)
• Communication devices
• Mobility devices
• Clothing and toiletries (sufficient quantities)
• Personal play and comfort items

Please label items and review specific questions with the Admissions and Care Coordinator.

The type of activities will vary significantly based on their unique needs and the care your child is receiving. Roger Neilson Children’s Hospice aims to provide a warm, comfortable “home away from home” experience in an adapted, inclusive environment. Therapeutic play activities are provided daily. Roger Neilson Children’s Hospice has a playroom with lots of toys and activities and a Snoezelen Room that provides multisensory stimulation, along with trained volunteers who spend time with the children at play.

While meals are prepared for guests and immediate family who might be staying at Roger Neilson Children’s Hospice during the admission, others may use the kitchen to cook and store their labelled food and the dining room for meals. Please consult with the PSW on duty for times that the kitchen is available.

A living room is available to all approved visitors wearing a visitor badge.

A library is available to all approved visitors wearing a visitor badge. Books (including reference books) can be borrowed. We ask is that you return them when you have finished using them.

A playroom is available for guests and families staying at Roger Neilson Children’s Hospice. All children using the room should be accompanied by a responsible adult (caregiver, staff, or volunteer).

The Snoezelen Room, a socks-only space, is designed to provide stimulation and/or relaxation for guests admitted to Roger Neilson Children’s Hospice under the care of staff or volunteers. All children using the room should be accompanied by a responsible adult (caregiver, staff, or volunteer).

Guest Rooms

The second floor contains guest rooms, a tub room, a laundry room, which guests can use when available, a nursing station, and a locked medication room. There are four single guest rooms and two double guest rooms, each with its own bathroom, wheelchair-accessible shower, and TV and DVD player.

There are also two family suites, primarily for use by families who want to be together as their child nears end of life. These rooms are furnished with a guest bed, a king-sized bed, table and chairs, couches, microwave and compact refrigerator, TV, and a DVD player. Towels and linens are provided. Emergency toiletry packages are available if needed.

Approved visitors are welcome at Roger Neilson Children’s Hospice. Please provide the team with a list of visitors you have approved to visit your child in your absence using the pre-admission questionnaire. This information will be verified again at admission. Visitors are encouraged to call ahead to the nursing station to coordinate best. The reception volunteer or designate will greet all your visitors upon arrival, have them sign in and out and provide them with a green sticker to wear, indicating they are approved to be upstairs.

Young children visiting (including siblings) must not be left unsupervised. A responsible adult must be with them at all times. Any child under 18 may stay overnight with permission from their legal guardian if a responsible adult is available to supervise them.

Community caregivers on the approved visitor’s list may visit, but they are not permitted to provide care. Friends and family on the approved visitor’s list may provide care with your written permission. They are asked to discuss the situation with the responsible nurse before giving care to collaborate safely.

Please call the nursing station (ext. 4652) if you think something has been left behind at Roger Neilson Children’s Hospice. You will be contacted if a team member discovers any leftover items to plan for pick up. Equipment, supplies, and personal items left behind will be kept in a lost and found. Families are encouraged to label items and confirm items at discharge.

The Perinatal Palliative Care Program at Roger Neilson Children’s Hospice is offered to parents and families informed of a prenatal, perinatal or neonatal diagnosis of a life-limiting illness or a life-ending diagnosis. Referrals are accepted from 20 weeks of gestation to 28 days old.

Obstetricians or primary care physicians should fax a referral to the palliative care team at 613-523-3617. The care team will triage these referrals before contacting the family.

If the referral is urgent, call CHEO at 613-737-7600 #0 and ask to be connected with the Palliative Care physician or nurse. The team is available 24/7.

Referrals from CHEO are received, as all other referrals, via EPIC.

No parent can be prepared for the intense grief leading up to and following their child’s death. Roger Neilson House provides a range of bereavement support and services for family members, whether or not the child had previously received services at RNH.

We accept both professional referrals and self-referrals from parents/caregivers. Referrals can be sent by e-mail at [email protected].

Individual Bereavement Counselling
Bereavement Support Groups
Parent Bereavement Support Group
Grandparent Bereavement Support Group
Sibling Bereavement Support Group
Perinatal Hospice and Bereavement Program
Perinatal Parent Loss Support Group
Pregnancy after loss support group (P.A.L.S.)

Roger Neilson Children’s Hospice is located on the Children’s Hospital of Eastern Ontario (CHEO) grounds on the Ottawa Health Sciences Centre campus, in Ottawa, Ontario. The address is 399 Smyth Road, Ottawa, ON K1 H 8L2. We can be reached at 613-523-6300, ext. 4600, fax 613-523-3617 or email at [email protected]

Roger Neilson Children’s Hospice is committed to creating a diverse and inclusive environment and providing culturally safe care to everyone in our community. We aim to be representative of the diverse communities we serve. We build, maintain, and value relationships that reflect equity, diversity, inclusion, and indigeneity. Every child, youth, and family has equitable access to effective and appropriate healthcare experiences.

Roger Neilson Children’s Hospice welcomes feedback from its guests and their families and uses this information to support the continuous quality improvement process. We are committed to reviewing and resolving any dissatisfaction regarding care or services in a fair, non-adversarial, and expediently. If you have a concern or complaint about any aspect of your child’s care or services while at Roger Neilson Children’s Hospice, please speak to the nurse caring for your child. If the issue is not resolved to your satisfaction, please contact the Manager of Roger Neilson Children’s Hospice at 613-523-6300 ex. 4603.

Roger Neilson Children’s Hospice promotes the integrity of the family and assures the best interests of the children we serve, as outlined in the Children and Family Services Act of Ontario (1990).

In accordance with the act, Roger Neilson Children’s Hospice strives to:

• Recognize the physical, cultural, emotional, spiritual, mental, and developmental needs and differences among the children we care for.
• Develop services that are responsive to the needs, values and customs of the diverse children and families we serve.
• Recognize that, wherever possible, services to children and their families are provided in a manner that respects cultural, religious, and regional differences.

The Ontario Ombudsman is an independent and impartial officer of the Legislature who resolves complaints about government and public-sector bodies. By investigating complaints and systemic issues within its jurisdiction, the Ombudsman promotes fairness, accountability, and transparency in the public sector. The office of the Ontario Ombudsman assesses all complaints and refers them to the relevant mechanisms for quick resolution wherever possible. The Ombudsman’s powers and jurisdictions are set out in Ontario’s Ombudsman Act.

You can learn more by visiting  Home – Ontario Ombudsman

Generally, we assume you consent to share personal information with those caring for your child. We will ask for your consent before we collect, use, or share your information for any purpose other than our stated activities. You may also withhold or withdraw this consent at any time by contacting us.

Roger Neilson Children’s Hospice will share personal information only to those who need it and have a right to it by law. These people include:

• You or the person responsible for making decisions for your child
• Your child’s care providers, both inside and outside the hospice
• People working for a health agency, such as the Ministry of Health, if required by law
• Other people for whom you have consented or when required by law.

Without consent, we will not reveal personal information.

To provide the best care possible, we must collect and use information about you, your child, and your family. We are committed to keeping your information safe and confidential, and we follow the rules set out in law about collecting, using, and disclosing your information. In addition, we have safeguards (i.e. and follow the rules set out in law about collecting, using, and disclosing it. In addition, we have safeguards (e.g., security, passwords, and policies) in place to ensure personal information stays private.

We may use your personal information to:

• Provide care. Personal information is used by care providers and trainees who are part of the health care team.
• Improve care. We may use personal information to improve our care by conducting quality improvement activities to help keep families safe.
• Teach. Personal information may be used to support our partnership with the University of Ottawa and other schools while adequately protecting your privacy.
• Conduct research. With your consent, researchers may use your health information while working on a study approved by the CHEO Research Ethics Board.
• Conduct satisfaction surveys. We care about our patients and want to hear from you about the quality of care and service your child receives. We will use this information to help improve the care we provide in the future.

If you think that Roger Neilson Children’s Hospice has violated your privacy rights, you may contact the Information/Privacy Commissioner of Ontario at:

2 Bloor Street East, Suite 1400
Toronto ON M4W 1A8
Email: [email protected]

If a planned or unexpected issue with services or facilities impacts access, those affected will be notified promptly.

Families are advised to load and unload their vehicles in the laneway between Children’s Treatment Centre and Roger Neilson Children’s Hospice. Parking is permitted on weekdays after 4 p.m. and on weekends only.

If you have an accessible parking permit, there are accessible parking spots identified in front of the Farm Boy Play Park next to Roger Neilson Children’s Hospice.

Since space on the campus is at a premium, parking is available on a first-come-first-serve basis. Due to the need to keep roadways clear for emergency vehicles, cars found in a “No Parking” zone will be ticketed.

The volunteer receptionist or staff member may obtain temporary Roger Neilson Children’s Hospice parking permits. The permit must be displayed at all times.

Families at Roger Neilson Children’s Hospice should speak to their nurse about acquiring a long-term pass to park in Lot C. The pass requires a nominal deposit ($20), which is refunded when it is returned.

Main Floor

Visitors to the main floor will be screened by the reception volunteer or designate, signed in and out, and given a blue visitor sticker indicating they are approved to be on the main floor. The main floor includes the kitchen, dining room, living room, library, playroom, and Snoezelen Room.

Second Floor

Visitors to the second floor will be screened by the reception volunteer or designate, signed in and out, and given a green sticker indicating they are approved to be there. The second floor includes guest rooms, a tub room, a laundry room, a nursing station, and a medication room, as well as the family suites.

Basement

Visitors to the basement will be screened by the reception volunteer or designate, signed in and out, and given a visitor badge indicating they are approved to be in the basement.

The basement contains offices and shared spaces such as the Teen Lounge, which provides gaming, movie-watching equipment, foosball, and table hockey games. The Training Room offers a mini kitchen, table and chairs for meetings and support groups. The basement is also home to the Music Space, with a piano, guitars and other instruments that guests and families are welcome to use. Please note that children under 14 should always be accompanied by a responsible adult (parent, staff, or volunteer).

All Roger Neilson Children’s Hospice and nearby hospital grounds are smoke-free by law. This includes vaping/e-cigarettes.

Telephones are in all common-shared rooms at Roger Neilson Children’s Hospice. Dial 9 to access an outside line for local calls. Long-distance calls can be made using calling cards or collect.

CHEO is located at 613-737-7600 ext. 0.

Families should get direction from a Roger Neilson Children’s Hospice team member during a fire or other emergency.