NHS threat to sick boy’s care af­ter dad raised £7m

The Mail on Sunday - - News - By Sanchez Man­ning SO­CIAL AF­FAIRS COR­RE­SPON­DENT

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.

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.

‘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 lifethreat­en­ing 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.’

COURT BAT­TLE: Tuf­fel Westen­holz, who was born with a rare bowel con­di­tion

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