Information held about your child

At Great Ormond Street Hospital (GOSH), we aim to provide the highest quality of care for your child. To do this, we need to keep records about your child, their health, the care they have had in the past and our plans for the future.

It is vitally important that we have your up to date address, phone number and family doctor (GP) details - if these have changed, please tell us.

How do we use your child’s records?

We need accurate and up to date information about your child so we can:

  • assess your child’s health and decide what care he or she needs

  • help you to work with us to plan your child’s care

  • work with other people involved in your child’s care, such as your family doctor (GP), local hospital
    and others

Other members of staff outside of your child’s clinical team may need to use your child’s records to:

  • check the type and quality of care we provide for your child and other children like him or her

  • protect the health of the general public

  • keep track of the money we spend, both as a hospital and as the wider NHS

  • manage our services to give the best service to the greatest number of people

  • investigate any concerns or complaints

We assume that you are happy for our staff to use your child’s information when you let us look after him or her.

We will ask your permission in the following situations if your child can be identified:

  • education and training of clinical staff

  • researching new ways of treating childhood conditions

  • publications, such as medical journals, information sheets, our annual report or our website

In addition, the law requires us to provide some information, for example:

  • when told to by a court of law

  • when reporting infectious diseases

  • when passing on information in the public interest, such as a crime having been committed

We will tell you when we are going to pass on information about your child in these circumstances, except if doing so would put someone at risk of harm or danger.

If you would like to discuss further how we use your child’s information, please talk to a member of the
clinical team. They may be able to limit access to your child’s personal information. Their concern for your child’s wellbeing is their priority.

How do we keep your child’s records confidential?

Everyone working for the NHS has a legal duty to keep information about your family confidential. The sharing of personal information is strictly controlled by law. When information is used for purposes not directly related to your child’s care (for example, as evidence of clinicians’ professional development), we remove personal details so that no individuals can be identified.

Accessing your child’s health records

You have the right to look at the information we hold about your child under the Data Protection Act 1998. When your child is old enough, they will also be allowed to look at their records and decide who else can see it.

On very rare occasions, the Data Protection Act requires us to withhold access to some or all of your child’s records, either in your own or your child’s interests or to protect information about other people.

If you would like to look at your child’s records, please write to the Data Controller, care of the Medical
Records Department at GOSH.

We will need you to give us your child’s full name, current address and GOSH hospital number, so we can be sure we are supplying the right set of records. If there is a specific time period or part of your child’s records you would like to access, please tell us.

Please note that there may be a small administration charge to cover the cost of retrieving the records from our system. We can also provide you with a copy of your child’s records although we will have to make a small charge to cover administration costs, postage and packing.

In most cases, the Data Controller will reply to your letter within 21 days, outlining any costs of access or copying. If this is not possible, we will tell you and give you an estimate of when you will be able to access your child’s records.

Data about ethnicity, language and religion

What do you do with information about my religion?

Religious belief and practice can be a great source of comfort during difficult times.

If you choose to tell us your religion, we can take extra care to respect your beliefs and to meet special requirements you may have, including dietary needs and visits from representatives of your faith.

What do you do with information about my language?

It is very important everyone understands each other when talking about your child’s care. We can make sure we communicate more carefully, and perhaps provide an interpreter, if we know that English is not your first language.

What is an ethnic group, and why do you need to know mine?

Ethnic group describes how you see your child, and is a mixture of culture, religion, skin colour, language, and the origins of your child and your family. It is not the same as your nationality.

Great Ormond Street Hospital has a responsibility to our patients and families, whatever their ethnic background. This information is used to make sure that:

  • all sections of the community have equal access to NHS care

  • the NHS develops services that meet the medical needs of all ethnic groups

In the past, we have used this information to plan our services for families. For instance, certain ethnic groups have a tendency to develop particular diseases more than other ethnic groups. Knowing how many people are in a certain group can help us to plan any screening or treatment services that might be needed.

Will my child’s care be affected by which ethnic group I choose?

No. Your child’s care will not be affected by the ethnic group you choose.

However, your child may benefit in the future from better services which are developed as a result of this information. This information will only be used by people planning hospital services, and you will not be identified by name. Only certain people who work in the hospital have access to this information, and they are required to keep it confidential at all times.

Do I have to give my child’s ethnic group?

No, you have the right to say that you do not wish to give this information. This will not affect your child’s care now or in the future. You will need to tick a box on the form to say that you have refused to give this information.

My child’s ethnic group is not on the list. What should I tick?

You should tick the ‘other ethnic group’ box and state your child’s ethnic group in the space provided. Every so often, we will look at the responses under ‘other ethnic group’ and may add groups to the standard list depending on the number of responses already received.