Haringey couple criticise NHS body over funding delays for disabled son's care

Zack Leveson needs two carers at all times but his parents struggled when an error was made by a local NHS body, reports Grace Howarth, Local Democracy Reporter

A Tottenham couple were left struggling to pay for parts of their disabled son’s care after a local NHS body moved to a new funding system.

The change meant couple Brian and Sue Leveson didn’t have access to their 20-year-old son Zack’s personal health budget (PHB), which covers part of his care and is funded by NHS North Central London (NCL) Integrated Care Board (ICB).

Zack has severe cerebral palsy, is non-verbal, and needs two carers at all times.

Brian said: “We kept sending them [NCL ICB] emails for six weeks asking them to address this.”

According to Brian complications came about at the end of July and early August when the NCL ICB set up the new account in his wife’s name despite the old one being in his name.

Explaining his experience transitioning his son to NHS care and the experience since then, Brian said the process had been “incredibly difficult”.

The issue was finally rectified in early September.

But Brian explained the couple had spent their own money in the interim and there was “some stuff we’ve got receipts for which we can claim back” but added it had been a “critical time” for Zack as he “wasn’t at college but on holiday”.

On top of this, the couple were mistakenly told on 12th August they had “weeks of surplus fund” in their PHB and were therefore in “breach of the Care Act [2014]” and would need to pay it back.

Brian said: “Not only do we not have access to the account but how can they be threatening us with action? We can’t get into the account to use it, it hadn’t built up a surplus fund anyway.”

He added: “We have a PHB to make sure we can be audited so I don’t understand how an account that’s been audited can make this mistake.”

Brian noted that the couple felt increasing distress during the period and did not feel the mistake was acknowledged, despite being quickly retracted by the NHS ICB.

A spokesperson for NCL ICB said: “We apologise again to the Levesons for any inconvenience or distress caused during a complex process of change, which was urgent, and outside of our control.

“Our team worked hard to deliver as seamless a transition as possible for all families using the service.

“In this case, we understand there was some initial confusion and miscommunication, but are pleased that this has now been resolved.”

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