Family failed by Trust’s decision to remove specialist care, Ombudsman finds

Gloucestershire Care Services NHS Trust failed in its duty to provide good clinical care for a boy with a life-threatening condition, an investigation by the Parliamentary and Health Service Ombudsman (PHSO) has found.

Dylan Gray was born with congenital central hypoventilation syndrome (CCHS), a life-threatening respiratory condition which required nightly ventilation by tracheostomy – a tube that delivers air through a hole in the windpipe. The Trust had previously provided a care package with fully trained staff who could change the tracheostomy in an emergency. This care had been in place since Dylan’s birth.

In 2017, the Trust decided not to train more staff to carry out this emergency procedure. It informed Dylan’s parents, Andy and Kate Gray, in December that they should either carry out the change themselves in an emergency, or call 999.

Mr Gray complained to the Ombudsman in May 2018, saying that the Trust had put their son’s life at risk and had not consulted them about the change. They were left with the stress of potentially having to undertake a complex, lifesaving procedure on their own child in the middle of the night.

Ombudsman Rob Behrens said:

'The NHS constitution is clear that patients and their families should be involved in decisions about care. In this case the Trust denied this family that right and took unacceptable risks with a young child’s care.

'The Trust must now review its policies and procedures so that this does not happen again and inform the CQC of its findings.'

Mr and Mrs Gray said:

'We are really pleased that the Ombudsman has upheld our complaint against the Trust in this case. We feel strongly that the Trust’s policy was implemented without adequately reviewing the clinical evidence or taking our views into account. It felt like no one was listening to us while our son’s life was put at risk.

'To have an unbiased and thorough review body such as PHSO involved is massively important and we are hugely grateful for their work to review and flag up the failings of the Trust in our case.

'We hope this review forces the Trust to change this policy and also sets a precedent so that other families do not need to go through the battle for justice that we have.'

Susan Field, Director of Nursing at Gloucestershire Care Services NHS Trust, said:

'We have reviewed and progressed recommendations made by the PHSO, which we have shared with Mr and Mrs Gray.

'We have apologised to the family for the shortcomings associated with the emergency tracheostomy change pathway whilst in community settings. We have certainly learnt from this and feel more confident that we will in future adopt more individual care plan arrangements with families so that children remain safe in our care.

'On behalf of the Trust, I would, once again, like to sincerely apologise for causing the family unnecessary distress and the impact this has had on them as a family.' 

The Ombudsman found the care provided to Dylan fell significantly below acceptable standards, and that the Trust had failed to offer a suitable and effective service. He also found injustice against Dylan’s parents, as they were placed under the burden of having to provide specialist emergency medical care themselves.

PHSO’s investigation found no indication that the Trust properly consulted Mr and Mrs Gray before making their decision. It cited costs, operational reasons and a lack of national guidelines as the reasons behind its decision, rather than prioritising clinical care.

The Trust earlier acknowledged some shortcomings, including their failure to look at all available evidence and alternatives when coming to their decision. In response to the Ombudsman’s recommendations, 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.