Patient Registration


Registering a patient on the transplant waiting list

It is usually a named recipient transplant coordinator who takes responsibility for registering that patient on the national transplant waiting list and the accuracy of that data entered once the patient has signed their consent form. Each patient registration on a specific organ transplant waiting list apart from the super urgent liver registrations is now performed online. Different clinical data is collected depending on the organs required but all sections are mandatory and registration will be delayed if the registration form is incomplete.

Once the patient has been listed on the transplant waiting list the patient should be informed and confirmation made that they understand:

  • how they will be contacted at the time an organ becomes available
  • who will be able to bring them into hospital or if hospital transport is needed
  • what arrangements they might need to make locally with neighbours/ friends e.g. to feed pets, look after dependents
  • what personal belongings and medication to pack
  • who to contact should they become unwell whilst listed
  • when the next maintenance visit/call will be
Urgent and super urgent listing for transplantation

In certain circumstances patients may need listing for transplantation without the time for extensive assessment or MDT meetings. In these circumstances the decision can be made by one senior clinician and depending on the organ type the other transplanting lead clinicians through out the UK are notified of the listing and are able to discuss the case directly with the listing centre if necessary. The recipient coordinator may be asked to super urgently/urgently list the patient in one of the following categories;
  • Super urgent liver
  • Urgent heart
  • Urgent small bowel/multi visceral
Policies

The NHSBT and BTS Guidelines for Consent for Solid Organ Transplantation in Adults April 2013. The Patient Selection and Organ Allocation policy.

Suspending a patient from the transplant waiting list

Once a patient is registered on the transplant waiting list it may be necessary to suspend that patient for a variety of reasons e.g. infection, change in clinical status, awaiting test results, reducing/increasing BMI, or the patient is going on holiday. Please inform NHSBT data services and the duty office when you would like a patient suspended from the transplant waiting list.
NOTE: The patient will not automatically be added to the elective waiting list if they are removed from the Urgent/Super Urgent, to do this a registration form for the elective waiting list must be completed in the usual way.

Waiting times to transplantation

Organ allocation and offering protocols are discussed and agreed by members of the Solid Organ Advisory Groups (SOAGs) and reviewed on a regular basis. Criteria and priority of organ allocation and offering is a complex process and has different determining factors depending on the organ type. Waiting times to transplantation will therefore vary organ by organ, donor type and by centre to centre depending on their acceptance criteria. Please see organ specific areas for more specific information.

Accruing waiting list points

Organ allocation and recipient selection criteria vary according to type of organ donor and organs offered. It is an important part of delivering an equitable service that patients details are updated regularly and that NHSBT are informed of any change in clinical details/status to ensure that patient are allocated the correct waiting list priority. Please view organ specific allocation policies.

New tool to help predict waiting times for a DBD kidney transplant

NHSBT's statisticians have recently developed a computerised tool that can be used in clinic with the patient as an educational tool to show potential waiting times for a DBD kidney for that individual. The tool takes into account age, blood group, ethnicity, transplanting centre, previous transplants and sensitisation of the potential recipient.

Organ offering and accepting an organ for transplantation

As from the 17th July 2013 the duty office at NHSBT will notify the transplanting trusts’ recipient coordinator/recipient point of contact (RPOC) of an organ offer by one of two ways;
  • Alphanumeric pager
  • One call to switchboard
  • SMS text
  • Fax
The recipient coordinator/RPOC will be given the donor ID number and two further indentifying pieces of donor specific data and asked to view the full offer electronically via the Electronic Offering System (EOS). Once an organ has been offered to a transplanting trust the donor data must be viewed electronically via either EOS mobile or full EOS web. A summary of the Core Donor Data can be viewed on a smart phone or a tablet via EOS mobile, a PDF of the full donor core data can also be view on EOS mobile, sent as an email to a secure email address or viewed on full EOS. Currently the devices that are supported by EOS mobile are:
  • iphone
  • Blackberry Bold and Curve
  • Samsung Galaxy
  • ipad
Further information about EOS can be found here.

The decision whether to accept an organ for transplantation depends on many factors and implanting surgeon must make that decision based on a balance of risks and benefits to the recipient. In some incidences it may be beneficial to view radiological images to aid decision making. Guidance and principles on donor organ imaging can be found at: http://www.odt.nhs.uk/transplantation/guidance-policies

Timing to reply and accept or decline an organ offer

Organ Acceptance Time
Cardiothoracic 45 minutes for full offer, then 30 minutes if provisional offer has already been received or for urgent offers following receipt of HLA
Liver 60 minutes for full offer then 45 minutes if provisional offer has already been received
Kidney 60 minutes for a provisional kidney offer then 30 minutes following receipt of anatomy.
Small Bowel 60 minutes then 45 if provisional offer has already been received
Pancreas 60 minutes then 45 if provisional offer has already been received
Fast Track As fast track offer SOP’s for each organ type
Offer Start Times
  • A verbal offer is deemed to start once the telephone conversation has ended.
  • EOS offers are deemed to have started once the telephone notification of the offer has been made
  • If a centre calls back within their allocated offer time to say they have been unable to access EOS then the start time of the offer can be reset but this must be recorded in the duty office notes along with the reason
  • SN-OD’s will be notified of the need to keep the duty office informed of other times and to work within the agreed timescales
  • Record time offer was made on NTxD
Offer End Times
  • When an offer is made please remind the centre of the time they have to respond and the offer is withdrawn at the end of this time
  • Once the centre has had the agreed offer time (as detailed above) and no response has been received, the offer is deemed to have ended and the offer should be made to the next centre
  • Centres have been advised that this will be the process followed so no formal withdrawal of the offer via the duty office is required
  • It is accepted that when offering multiple organs and/or multiple donors, there may be an unavoidable delay in actioning an offer end time; however this should be actioned as soon as practical to avoid unnecessary delays
Extension of Offer Response Times
  • Extensions to offer response times can be offered by the duty office person on call in very exceptional circumstances
  • Should a request for an offer extension be received, take the details of why the extension is needed and check with the SN-OD if they are happy this will have no detrimental effect on donation
  • If SN-OD is in agreement check with the duty office person on call to advise them of the situation and seek authorization for the extension to be granted
  • All extensions/requests for extensions will be recorded by the duty office person on call and reviewed on a regular basis to identify any patterns or causes for concern.

Please follow the link to EOS user guides.

Next section: Donor Family and Recipient Contact

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