Guidance

Nurse user guide: newborn outcomes solution

Updated 21 September 2021

Access the solution

Nurse users use the sickle cell and thalassaemia (SCT) newborn outcomes solution to send referrals to nursing or treatment centres.

The solution is only available on an N3 connection (NHS secure).

Access the solution here.

Login

To access the sickle cell and thalassaemia (SCT) newborn outcomes solution, login with the username provided to you.

You must use the link in your welcome email to set your password.

If you need access to the solution please contact your local solution administrator (superuser). If you do not know who this is please contact the helpdesk.

National SCT newborn outcomes system helpdesk

Email [email protected]

Telephone 0161 277 7917

Lost or forgotten password

If you have lost or forgotten your password for the solution, you can use the ‘forgotten your password?’ link below the login section to reset it.

You will then be asked to enter your username and select ‘email link’.

The solution will:

• prompt you to enter your registered email address
• send an email containing a link

Follow the link in the email to reset your password.

What to use the solution for

As a nursing centre you will use the solution to:

• receive screen-positive notifications from the laboratory
• enter SCT pathway details for the children in your care
• refer children to other centres for continuing treatment
• monitor your referrals
• access reports

Receive a screen positive referral

When you receive a new referral from a laboratory or other centre, you will:

• get a notification by email
• identify a new notification within the solution (see the notifications bell icon at the top-right of the screen)
• see new referrals highlighted on your patient listing

Accept a referral

Before you can do anything else with a referred patient record, you must accept the referral. This will:

• record the date of receipt within the solution
• send a notification back to the referring laboratory or centre to let them know that the referral was accepted

To accept a referral, click the NHS number link on the highlighted record in the patient listing. This will take you to the patient details page, where you will be prompted to accept the referral.

All data entry fields on this page are disabled until the referral is accepted.

The ‘date screening result received’ will default to today’s date and may need to be amended.

You must click ‘save’ to save any changes you have made before leaving the page.

The referral must be accepted as soon as possible after receipt in order to notify the laboratory that the referral has been accepted.

Add clinical data

Once you have accepted the referral, you can continue to enter patient information and pathway data (such as date result given to parents).

A nurse user may be required to enter data in the ‘organisation responsible for reporting to parents’ field and/or the ‘organisation responsible for first treatment appointment’. If more than one centre has been associated with the child’s record, there will be a drop-down list that includes all centres that have accepted the record previously.

If the final diagnosis is unknown while additional testing is performed, the user can choose ‘not yet confirmed’ from the drop-down list in the diagnosis field.

You do not have to enter this information all at once. You can return to the record at any time to add further information or make amendments.

If you are a nurse user working in a sickle cell centre, you are required to refer the record on to the appropriate medical centre once the parents have been notified of the child’s result. The medical centre is responsible for completing data regarding the child’s first medical appointment and offer of penicillin if applicable. If the record is not transferred to a medical centre, the record cannot to be transferred to the National Haemoglobinopathy Register (NHR) once complete.

You must click ‘save’ to save any changes you have made before leaving the page.

If you have any trouble locating a specific patient record, you can use the search function.

Decline a referral

There is a simple process for declining a referral.

1. Open the record referred to you.
2. Select ‘no’ when asked ‘do you wish to accept this referral?’
3. Type a clear reason why you would like to decline the referral. The record will remain on your view until the helpdesk have reverted the decline back to the referrer.

Duty of care is not transferred between users unless referral is accepted.

Refer patients to another centre

To refer a patient to another centre, for example from a nursing centre to hospital, or to another centre when the patient moves, go to the child’s patient details page by clicking their NHS number and use the ‘refer’ button at the top right.

Enter the referral details and click ‘refer patient’ on the pop-up to send the referral.

When you refer a patient, the destination centre will receive a notification and will need to accept the referral just as when you received the initial referral. The solution will automatically track patient records as they move from centre to centre.

A patient who has been accepted by another centre will no longer appear on your patient listing by default. If you want to monitor or amend data for a patient you have referred, you can use the search function and tick the ‘include historic patients’ box to find their record.

Save clinical information securely

There are 2 easy ways to save the clinical form.

You can save it as a PDF:

1. Right click your mouse on the form.
2. Select ‘print’.
3. Select ‘save as PDF’.
4. Choose a secure destination.
5. Name the file and select ‘save’.

You can save it in HTML format:

1. Right click your mouse on the form.
2. Select ‘save as’.
3. Choose a secure destination.
4. Name the fine and select ‘save’.

Monitor your referrals

Once the patient has been accepted by another centre, they will no longer appear on your patients list by default and will have to be searched for using ‘include historic patients’. The record is updated as further information is entered by counsellors and clinicians along the screening pathway.

You can amend details on the child’s record by clicking on the NHS number in the patient listing. This will take you to the child’s details, where you can make any changes.

Search for a child

To find a specific child’s record in your patient listing, use the search box above the patient listing to search for a record by:

• NHS number
• laboratory reference number
• surname

If you do not see the record you’re looking for, select the ‘include historic patients’ box under the search button. This will show records for children who have been discharged from the pathway or referred on to another centre.

Notifications and reminders

The solution sends notification emails to update you on the progress of patients through the pathway. This includes alerts to take action, such as when referral has not been accepted by a nursing or treatment centre.

The solution will automatically monitor key pathway dates to assist with:

• standard 8 (timely reporting newborn screen positive results to parents)
• standard 9 (timely follow up, diagnosis and treatment of newborn infants with a positive screening result)

Read the standards for sickle cell and thalassaemia screening.

When relevant dates have not been entered into the solution within the time limit specified in the standards, the solution will generate reminders until the data is completed or the patient is discharged.

Immediate notifications

Key events in the patient pathway will generate an automatic notification to any centres involved in the care of the child. Centres will be notified when:

• a child is referred to another centre (for example, from a nursing centre to a medical centre)
• dates for standards 8 and 9 are entered

Scheduled notifications

When an event is recorded, the solution will automatically monitor patient records to provide reminders when key data has not been entered, or when a patient referral is outstanding.

This ensures that all centres involved in the child’s care are prompted to complete pathway data, without need of manual chasing by labs.

Users will receive reminders from the solution:

• daily when a referral has been created but not accepted
• weekly when the result has not been reported to parents within the Standard 8 timeframe
• weekly when the child has not had a first treatment appointment within the Standard 9 timeframe

End the pathway

The pathway is usually ended by a clinical user when the patient has transitioned into haemoglobinopathy care (see clinical user guide). This will allow you to select a reason from the drop-down list.

You can end the pathway if:

• the patient transitioned to haemoglobinopathy care
• treatment is not required (result not clinically significant)
• the patient moved abroad
• the patient was entered in error
• the patient died

Once you click ‘end pathway’, you will no longer be able to edit this patient’s details.

Reports

The solution provides a suite of automatic reports. You will see a ‘reports’ link on the top navigation menu on all screens.

The list of available reports is tailored to each type of user, depending on their role and the centre they are attached to.

Currently, reports are available on the solution to give users:

• a summary of patients by result type and demographic details
• a data quality report
• performance against standards 8 and 9

Reports can be:

• filtered by date
• exported in a variety of formats such as Word, PDF and Excel

Audit history

Every patient record includes an audit history. This details any changes made to the record since the creation of the record:

1. Open the patient record.
2. Scroll to the bottom of the form.
3. Select the ‘audit history’ button to view the list of all changes made to the record and who made them.

Training

Training can be accessed by contacting [email protected]

Training can be held via MS Teams and will take up to 30 minutes to complete.