If you have agreed to your information/ your child’s information being included on the Database but then change your mind you can contact us and we will stop collecting data.
Where can I get further information?
Please ask your child’s doctor or alternatively contact the Project Lead on
0151 252 5187
This information can be made available in other languages and formats if requested.
the North West Children’s Palliative Care Network
in partnership with
Alder Hey Children’s NHS Foundation Trust
Alder Hey Children’s NHS Foundation Trust
Eaton Road
Liverpool L12 2AP
0151 228 4811
Ref PALL/L/2/2012
Alder Hey Children’s Hospital
Review date Mar 2014
North West Children’s
Palliative Care Network
Database of Children
with Serious and
Potentially Life-threateningIllnesses
Information for
Patients, parents and carers
November 2012
Why do we need the Database of Children with Serious and Potentially Life-threatening Illnesses?
We routinely collect information about the needs of all patients as part of their day to day care. This includes information about the person’s diagnosis, the sort of care they need, where care is provided, the kinds of professionals involved and the costs of care. This applies to people of all ages including children. (For ease of reading we will use the term “children” to describe babies, children and young people under the care of children’s services). We use this information to help with patient care.
When a child has a serious and potentially life-threatening illness, and if permission is given, some of this information can also be stored in a special Database (the Database of Serious and Potentially Life Threatening Illnesses). We can then use this information to help to identify services that are needed but are not available, to plan and develop new services, to identify whether existing services are working effectively and to develop better ways of funding services. The Database is the only way that we can find out how many children have serious and potentially life-threatening conditions in the North West and the type of illnesses that they have.
What is a serious and potentially life-threatening condition?
A serious and potentially life-threatening illness is one which we hope can be cured, but we know that sometimes cure is not possible. Some children with serious and potentially life-threatening illnesses may require palliative care. There is a wide range of serious and potentially life threatening illnesses and every child is different. Please talk to your doctor if you are unsure whether you/ your child may have a serious and potentially life threatening illness, or have further questions.
What do I need to know?
The Database contains information on the patient’s diagnosis and the date the diagnosis was made, their date of birth, sex, ethnic group, postcode, the area where their GP is based, their needs, the types of services they are receiving, and the outcome of the care they receive. We do not record the patient’s name or names of members of their family. Information will be stored for a maximum of 30 years after which it will be destroyed.
Who will get to see the information on the Database?
The information on the Database will need to be seen by the project team at Alder Hey Children’s Hospital so that we can pull together information from all the different teams that may be involved in the patient’s care. We will not be sharing any more information for the purposes of this project than would be routinely shared in the course of routine patient care. Information from the Database will not be shared with other organisations or services except in a summary form where individual children cannot be identified. The reports we publish never identify any individual child.
How do I know the information is safe?
We are very careful with all of the information we collect and follow strict rules about how we look after it and who can use it. The information will be stored in a purpose-built secure database at Alder Hey Children’s Hospital, in accordance with the Data Protection Act 1998. Any information that could identify you / your child will be treated in a confidential manner and only be accessible to the staff that need to know.
What do I need to do?
If you agree to your information/your child’s information being stored on the Database we will ask you to sign a consent form. If you do not want your information to bestored on the Database we will also record this fact so that we do not ask you again. If you are unsure you can give us permission to ask you again if your/ your child’s circumstances change and it is more than 6 months since we last asked.
Do I have a choice?
Yes, you do have a choice. You may not want to give consent for information to be collected. If this is the case, then your wishes will be respected and your decision will not affect the care you/ your child receives.