Father of boy with life-threatening condition condemns NHS

Father who helped raise £7m to pay for medical research for son, six, hits out at NHS as it threatens to withdraw life-saving care

  • Tomas Westenholz’s son Tuffel suffers from life-threatening midgut volvulus 
  • As a result, doctors were forced to remove most of his small bowel at birth 
  • Tomas helped to secure £7 million to allow scientists to continue research

A father who helped raise £7 million for medical research after his son was born with a rare illness has condemned NHS chiefs for threatening to withdraw care from the six-year-old.

Thomas Westenholz’s son Tuffel suffers from midgut volvulus, a life-threatening condition where the intestine becomes twisted in the womb.

As a result, doctors were forced to remove most of his small bowel at birth and the youngster now has to receive the nutrients he needs to stay alive through a tube.

Tuffel Westenholz in hospital. Doctors were forced to remove most of his small bowel at birth


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On receiving the diagnosis, Mr Westenholz resolved to help find a way to extend his son’s life and discovered that research at Great Ormond Street Hospital into creating a new bowel from stem cells had stalled from lack of funds.

He threw himself into fundraising and his applications to EU bodies and the Oak Foundation, a Danish philanthropic organisation, helped to secure £7 million to allow scientists to continue the research.

The Danish-born businessman is now battling NHS finance managers to ensure that Tuffel continues to receive critical overnight care. The youngster is fed over 12 hours at night through a catheter attached to a machine that runs into his heart and must be constantly watched in case the feeding line is pulled out, which causes severe bleeding and requires surgery.

Mr Westenholz, 40, said the family sought help after finding they were unable to cope after being Tuffel’s sole carers for the first three years of his life.

The Greenwich Clinical Commissioning Group (CCG), the family’s local NHS authority in South East London, agreed to provide overnight carers all week but, following a review, told the family last March that this would be reduced to four nights.

On receiving the diagnosis, Mr Westenholz resolved to help find a way to extend his son’s life

‘What they’ve done makes no sense because it costs a fortune putting Tuffel into hospital,’ Mr Westenholz said. ‘So it’s absolutely absurd that you’re exposing him to this harm and risk and it’s costing the NHS more money.

‘Medical records show that he lost his line and required multiple operations when we did not have seven nights’ care. After we got seven nights he has not lost a single line and had no life-threatening infections.’

After Greenwich CCG turned down his appeals, Mr Westenholz’s asked lawyers in November to inform it of his intention to request a judicial review.

In response, the health authority has agreed to review Tuffel’s case and reinstate his seven-day respite care as it does so.

A Greenwich CCG spokesman said: ‘We have been in communication with Mr Westenholz and will continue to work with him and collaborate with the legal action he has initiated.’

There is also fundraising page set up by Tuffel’s father Thomas Westenholz to raise funds for a legal case to prevent Greenwich CCG from cutting his son’s respite care in the future. 

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