Haringey (Parliament Politics Magazine) – A Haringey couple have criticised an NHS body over delays in funding essential care for their disabled son, raising concerns about support for families.
After a local NHS organization switched to a new financing scheme, a couple from Tottenham found it difficult to cover some of the costs associated with caring for their disabled son.
Due to the move, Brian and Sue Leveson were unable to access their 20-year-old son Zack’s personal health budget (PHB), which is financed by the NHS North Central London (NCL) Integrated Care Board (ICB) and covers a portion of his care.
Zack is non-verbal, has severe cerebral palsy, and requires constant care from two caregivers.
Brian said:
“We kept sending them [NCL ICB] emails for six weeks asking them to address this.”
Brian claims that issues arose in late July and early August when the NCL ICB opened a new account in his wife’s name even though the previous one was in his.
Brian described his son’s transfer to NHS care as “incredibly difficult,” and he talked about the experience ever since.
Early in September, the problem was eventually resolved.
However, Brian clarified that the couple had used their own funds at that time and that there was “some stuff for which we have receipts which we can claim back.” He also mentioned that Zack had been in a “critical time” because 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.”
What did the NHS body say in response to the couple’s criticism?
The new funding arrangements are designed to enable more effective care to be delivered in a more coordinated manner, although some unavoidable delays and challenges associated with applying the new funding arrangements have taken place.
They understand the distress caused by these delays and are working with families and providers to make sure support is provided in a timely manner.
NHS officials emphasized that they are constantly trying to improve decisions around the funding arrangements in the ways of transparency, communications, and speeding up the decisions.
The NHS body stated that it is committed to working alongside disabled people and their families, in order to be better equipped to meet care needs, regardless of the issues around staffing and resources.