Consultation Responses

We formed part of the national steering group for the development of a new national template for the patient held child health record which was launched in May 2009.

Now NHS Inform – Information for young people using NHS services

We worked closely with Health Rights Information Scotland 2008/2010 on the development of their booklet, which aims to help children and young people in Scotland have more say about their healthcare and treatment. ‘Have your say!’ encourages them to let the NHS know how they’re being treated. It also explains how to make a complaint about the NHS if they feel they have been treated unfairly.

The booklet makes it clear that NHS staff have a duty to take the needs of children and young people seriously, whether they are making a suggestion or a complaint. It explains:

• what the rights of young people are
• who to speak to if they have a suggestion or complaint
• how the NHS deals with complaints, and
• who can help them have their say.

We have commented on many draft SIGN publications, including their leaflets on Autism Spectrum disorders for parents and for young people. More recently, we have facilitated the involvement of Kinship Carers in the Foetal Alcohol Spectrum Disorder Care Pathway development.

Children’s Health Scotland has recently worked in partnership with the following to represent the views and needs of sick children, young people and families:

• Angus Third Sector Children’s Services Forum
• Barnardo’s
• Centre for Excellence for Looked After Children in Scotland
• Childsmile
• Dundee Young Parents Pathway Group
• Health and Social Care Alliance, GIRFEC Project Advisory Group
• End of Life Care for Children and Young People in Scotland Group
• Drumchapel Early Years Forum
• Family Fund
• for Scotland’s Disabled Children
• Prince and Princess of Wales Hospice
• Mental Health Foundation, Mental Health of Young People with Long Term Conditions Steering Group
• National Association of Health Play Staff
• NHS Education Scotland
•   NHS Greater Glasgow and Clyde – Patient Experience & Public Involvement, Health Improvement Team
• Royal Hospital for Children Glasgow – FILES Committee; The Rights of the Child Group; Family Support Service, Glasgow Children’s Charity
• Scottish Children and Young People’s Palliative Care Executive
• Scottish Children and Young People’s Palliative Care Network
• National Managed Clinical Network for Children with Exceptional Healthcare Needs (CEN) – Steering Group and Education Group
• NHS Tayside: Transforming Health Visiting & School Nursing Tayside Improvement Group; AHP Complex Needs Network
• Royal College of Paediatrics and Child Health
• Scottish Attachment in Action
• Scottish Children’s Services Coalition members
• Scottish Government Children and Young People’s Health Support Group
• Scottish Government Administration of Medicines and Healthcare Support in Schools Guidance Review Group
• Scottish Government Paediatric Short Life Working Group into the Review of the ‘Food in Hospitals (Scotland) 2008
• Scottish Health Play Specialist Network Group
• Scottish Transition Forum, ARC – transition standards for young people
• Scottish Epilepsy Centre
• Strategic Litigation Steering Group
• Strategic Paediatric Educationalists and Nurses in Scotland (SPENS)
• Tayside GIRFEC Practitioners Forum
• The Fostering Network

We also worked closely with Angus, Clackmannanshire Fife, East Lothian, Dundee City, Edinburgh City, Falkirk, Midlothian, Perth and Kinross, Stirling, West Lothian, Local Authorities. NHS Lothian and NHS Greater Glasgow & Clyde Dental Services; NHS Lothian Paediatric Psychology & Liaison Service.