We wanted to share some resources that are available and the support we will provide should you unfortunately have to recieve palliative care services from our service. Please see below.

Together for Short Lives (2026):

What is Children's Palliative Care - Together for Short Lives

Rainbows support resources:

Rainbows meet the team

Provision in NUH

Lead Nurse for Paediatric Palliative Care and Paediatric Palliative Care CNS

Caroline Dorsett

07812275400

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Clinical Lead for Paediatric Palliative Care

Dr Sarah Haynes

Elisa Monk- Nottingham-based Palliative Care Nurse Specialist  

07512317247

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Claire Allsopp - Nottingham and Leicester-based Hospital Family Support Worker 

Read more

The aim of this service is to monitor your child’s growth and development, as well as highlighting the importance of making healthy life style choices. We will provide your child or the young person with an individual detailed follow-up care plan that outlines any long term health needs and late effects of treatment. This information will support your child taking over the responsibility for their own health needs as they become older and more independent.

This hospital led service will continue into adult life for some patients and for others there will be a process of discharge back to the care of the general practitioner. Your consultant will discuss the move to the long term follow-up service at around 3-5 years from the end of treatment and you will be cared for in either the consultant or nurse led clinic. Long term follow up (LTFU) MDT’s will be held regularly to discuss patients who are more than 3 years off treatment and are under the care of the LTFU Team. If you have any questions regarding this service you can talk to the Long Term follow-up Macmillan Clinical Nurse Specialist (CNS).

Role of Long Term follow-up Macmillan CNS 

• Providing information and support for survivors on:
• Treatment and late consequences
• How to maintain own Health
• Wellbeing, survivorship and mental heath
• Rehabilitation
• Local support agencies across region
• Education
• Financial/benefits/employment 

Nurse led clinics are available to children and young people once they are 5 years post end of treatment and adults who were treated during childhood.  Additional support Information given to teenagers from age 14 upwards at the end of treatment.

Clinics provide:

• Holistic care for patients prioritising their own needs
• Late Effects education and ongoing lifelong surveillance
• Healthy lifestyle and physical activity
• Signposting to local mental health support and other organisations
• Referrals to other specialists for ongoing health care needs
• Providing letters of support for benefit reviews and appeals
• Self-management
• Surveillance care plan tailored to individual patients
• Liaising with primary care and other hospital specialties
• Transition back to primary care or ongoing in adult LTFU