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Boy’s life put at risk after Trust withdrew specialist care against wishes of family


Organisation we investigated: Gloucestershire Care Services NHS Trust

Date investigation closed: July 2019


The complaint

Mr A complained about the change in the care package the Trust provided for his son, who has a life-threatening condition and needed nightly ventilation by tracheostomy.

Since his birth, the Trust had a care package in place with fully trained staff who could change the tracheostomy in an emergency. However, this provision was withdrawn.

Background

In 2017 the Trust decided to stop training new staff to carry out this emergency procedure. The Trust informed the family in December that year that parents should either carry out the change themselves in an emergency, or call 999.

The family first complained to the Trust in March 2018. They questioned the decision and said the Trust had not provided them with the evidence staff relied on to make it.

They pointed out the suggestion to call 999 was flawed. This is because there is only a window of around twenty minutes before a tracheostomy can no longer be replaced, and the response time for an ambulance is fifteen minutes. The ambulance crew would also not be trained at inserting the tube.

The family said there was a lack of clinical evidence to support the decision. They claimed the Trust unfairly dismissed their evidence that their son’s life had been put at risk, and the anxiety and distress this caused them.

The family wanted the Trust to reconsider its decision. They believed the Trust should arrange for another alternative to give their son the support he needed.

We obtained clinical advice which said that if the overnight carers were not able to undertake the emergency tracheostomy tube change, this would be inappropriate.

The Trust’s decision put an additional burden on the family.

What we found

We found that:

  • the care provided to Mr A's son fell significantly below good clinical care and treatment 
  • the Trust fell well short of provision of a suitable and effective service 
  • there was no indication that the Trust properly consulted the family before making its decision 
  • the Trust did not act fairly and proportionately in how it carried out its review of this service.

Putting it right

The Trust has already acknowledged some shortcomings, including how it did not look at all available evidence and alternatives when coming to its decision.

Mr A’s son’s situation has now changed and he no longer requires this specialist care. However, the family were keen to make sure that the Trust did not repeat its mistakes. Mr A wants to see changes to the Trust’s policy and its policy-making procedures.

The Ombudsman recommended that the Trust needed to do more to right these wrongs so that other families do not experience the same failings.

In response, the Trust has written to the family with an apology and an outline of changes it will make. This has been shared with the CQC.

The Ombudsman will continue to review and work with the Trust to make sure it has fully complied with the recommendations.