Part 4 – Severe Bleeding Disorder Alert Card

There are 670 people with haemophilia in Ireland and an additional 1,600 with von Willebrand disease or other inherited bleeding disorders. Of those with haemophilia, 240 have severe haemophilia. In the event of a bleeding episode, rapid treatment is vital. The majority of people with severe haemophilia treat themselves at home when required. Hospital based treatment is centralised around 3 Comprehensive Care Centres:

  • The National Centre for Hereditary Coagulation Disorders St James’ Hospital, Dublin,
  • Our Lady’s Children’s Hospital Crumlin
  • Cork University Hospital

 

There are secondary centres in:

  • Galway University Hospital
  • Limerick Regional Hospital
  • Waterford Regional Hospital

 

All other hospitals around the country carry a minimum stock of factor concentrates in case of emergencies.

If an individual with haemophilia presents at an emergency department with a bleeding episode which requires treatment with factor concentrate, a number of delays can occur. Firstly, the triage nurse may not be familiar with haemophilia and may not be aware of the fact that factor concentrates should be given without delay. The doctor seen at the Emergency Department may be similarly unfamiliar with haemophilia and may order tests, x-rays or scans to confirm a bleeding episode is present before ordering factor concentrate. There may be a delay in locating the factor concentrate which is stored in the hospital. There may be a delay if a consultant haematologist in the hospital has to sign off before the factor concentrate is to be used.

In a normal scenario in an Accident & Emergency Department when a person without haemophilia attends, the person is triaged, seen by a doctor, diagnosed and then treated. The difference with a person with haemophilia is that it is necessary to treat the bleeding episode with factor concentrate without delay and then follow up with diagnostic scans or other tests required after giving treatment. The health care workers in the emergency departments may be reluctant to do this and we have recorded a number of cases where people with haemophilia have been subjected to long delays in emergency departments before receiving factor concentrate because of some of the above mentioned scenarios. This is despite the fact that they would have asked the emergency department to contact their Comprehensive Treatment Centre for advice and information. We are aware of two cases in the past two years where individuals with severe haemophilia suffered traumatic head injury and, despite requesting treatment with factor concentrates as soon as they arrived in the emergency department, significant delays of several hours occurred. These cases could have resulted in permanent damage or even death.

The three Comprehensive treatment centres offer 24 hour advice to all other hospitals on appropriate treatment. It is vital that a person with haemophilia who attends at an Emergency department would be able to encourage the health care workers to contact the specialist centre for advice without delay.

This is the rationale behind the Severe Bleeding Disorder Alert Cards.

We have been produced these cards in conjunction with the National Haemophilia Council. The cards are distributed by the Comprehensive Care Centres to all patients with severe haemophilia. The cards ask the health care worker in the relevant Emergency Departments to immediately contact the Comprehensive treatment centre and provide the telephone numbers for use during the day and at nights and weekends.

For the person with haemophilia, the most important piece of equipment in a non specialist centre is the telephone and the instruction to the Emergency Department staff to call the relevant centre will save lives.

 

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