Jasmine Hughes' story highlights explicitly the need for good communication with parents, undiluted communication of parental concerns and crystal clear communication of information between medical professionals both within teams and across multidisciplinary teams and different centres. To read Jasmine's story, click here.
These are the issues identified and learning and recommendations that followed, shared with you with the permission of the NHS Trust who produced them:
- Communication between the neurology unit and the District General Hospital (DGH) does not appear to have been ideal, and up to date information about JH’s condition was not shared promptly. The DGH did not advise the neurology unit of one admission, and the neurology unit did not send a copy of the discharge summary. The discharge summary was not addressed to a named consultant. The DGH team did not communicate to the neurology unit the high level of parental concern. If the neurology unit team had been informed of reattendance at A&E this may have influenced the management.
- There were a number of different team members from the DGH communicating with a number of different team members from the neurology unit. Deterioration over time was not recognised because of lack of continuity throughout the care process. Most individuals saw JH only once or twice and hence failed to appreciate the change over time. There was no discussion between senior doctors on either side regarding the management plan prior to her attendance for a neurology assessment.
- There were some delays to JH’s treatment at the neurology centre, as the medical team attempted to ensure that all testing could happen on the same visit. This meant that the DGH were advised not to perform a lumbar puncture, as the Neurology Team ‘may have’ repeated it anyway and it seemed unnecessary to put JH through the procedure twice. It also meant that the assessment at the Neurology centre took place a week after the initial referral, rather than 2 days after the referral. There was a further delay in following up the results of the lumbar puncture, once it had been performed.
- Assessment at the neurology unit was not effective in recognition of the deterioration that had occurred over the previous two weeks and hence JH was not admitted for specialist neurology care as it was felt that she could be managed as an outpatient. There were issues with communication as some symptoms and management was not clear to the parents.
- It was unclear who the named consultant was at the DGH leading on JH’s care, resulting in delays and miscommunication
- Although the DGH team had experience of administering Methylprednisolone infusion this was mainly in the context of rheumatological and not neurological disorders, hence appropriate monitoring was not carried out.
- Methylprednisolone was commenced on Friday evening whereas it would have been best done during the daytime when there would have been more number of medical and nursing staff available to monitor JH’s progress.
- The monitoring, and management of deterioration following the infusion, was suboptimal, as it did not commence until JH suffered seizures
- The case highlights issues around communication, documentation and monitoring which are critical for a shared care model. It is important that individuals who communicate and assess these children have a complete picture rather than piecemeal information. It is essential for all children to have a named consultant at a local hospital and specialist centres so that communication can be effective and important information is not lost in the process. This will ensure that any deterioration is recognised and acted upon promptly.
- A neurology specialist centre is often asked for advice about patients that are being assessed locally. It is very difficult to make diagnoses on these patients if they have not yet been physically assessed at the centre. It is important that staff are cautious when coming to diagnoses on patients at other hospitals. In JH’s case the team felt the imaging was suggestive of leukodystrophy, and this may have influenced the decision to delay the assessment.
- Communication with referring teams needs to be improved, so that all conversations are documented, and discharge summaries are sent directly to relevant clinical teams. If the parents were provided with copies of discharge summaries they would have the complete clinical picture, and could also highlight any information gaps to clinicians at different Trusts.
- Decisions regarding care or procedures are best made by the local team that has the patient in front of them. These could be discussed with the specialists but the final decisions should be made by the senior member of the team that has assessed the child and has access to all the information.
- Since the incident standard waits for admissions to the neurology centre for these presentations have been agreed, and it is considered that similar referrals should be seen within 3-5 days of referral.
- Since the incident the DGH have instituted policies to ensure that a named consultant can be identified with responsibility for each child.
- The DGH have also obtained an appropriate Methylprednisolone administration protocol, this includes neurological assessment and close BP monitoring.
- The desire to co-ordinate tests to reduce the need for repeat visits, should be considered in light of the urgency for admission. The perceived urgency must be ‘tested’ to reduce the risk of assumptions being made.
- Importance of having accurate patient information on internal information systems is also highlighted.
- The review highlighted that when medical staff asked JH’s parents whether JH had had any seizures, they did not explain what various forms of seizures might look like.
- Following incidents that occur across Trusts it is important to hold reviews with clinicians at all hospitals involved. This improves shared learning.
- Parents should be involved in incident investigations, both to review descriptions of what happened, and to suggest improvements.
Neurology Team Recommendations
- Neurosciences must introduce a standard administrative protocol for sending out discharge summaries to ensure that they reach the correct local team.
- Neurology should start giving or sending discharge summaries to parents routinely.
- Neurology team should make sure that a named local consultant should be identified for each patient that advice is given.
- Neurosciences should trial sending written confirmation of advice given over the telephone to local hospitals to consider whether this is feasible and practical.
- The weekly Neuroradiology Multidisciplinary meeting should make and retain a record of who attended that meeting; and what the final opinion is about the radiology images, for every patient who is discussed in the meeting.
- The Neurosciences Management Team should ensure that the Trust’s ‘Diagnostic Testing and Screening Policy’ which emphasises the requirement for medical teams to act promptly on the results of tests is fully implemented across neurosciences.
- The case should be discussed again at the Neurosciences Academic meeting to ensure that all the lessons are disseminated.
- Neurology should audit waiting times for admission for an assessment to ensure that the new guideline waiting times are being met.