Mansfield mum complains of 'postcode lottery' for her disabled son's care
The family of a young Mansfield boy have spoken of their frustration after being forced to raise money for critical care equipment.
Zach Blackburn has regressive autism, hydrocephalus and intestinal failure, and regularly suffers from seizures.
The 10-year-old’s medication is managed by central lines and he requires around-the-clock care to keep him safe.
Zach’s mum, Tricy Isherwood, has spoken out about her frustration with the care system, which means Zach is currently on a waiting list to replace critical equipment at his home.
She said: “Children with complex needs under Nottinghamshire County Council do not have a continuous care plan.
"We get discharged every five months, even though Zach’s needs are constantly changing, and have to go to the back of a waiting list, which is usually around six months long.”
Zach’s family raised money for a specialist bed for him two years ago but sadly, as his needs have changed, this now require modifications costing £1,000, amongst other equipment.
Tricy continued: “His central line is getting caught in the bed – if it comes out, it could be fatal, so every night he goes in it I barely sleep a wink with worry.”
Nottinghamshire County Council say they have ‘considerable sympathy’ for the family’s struggles but believe they are offering the services they ‘legally should’.
Laurence Jones, Service Director, Commissioning and Resources in Children and Family Services said: “The County Council and local CCGs continue to review how they work together to try and minimise disagreements and delays about their role in individual children’s care in what are a very complicated set of circumstances.
“Children’s disability services provided by Nottinghamshire County Council are in line with national guidance and are regarded as performing well.
"Special educational need and disability services were specifically inspected by OFSTED and the CQC in 2016 and Nottinghamshire, unlike many inspected areas, did not have any written statement of actions needed to address deficits.
“Children’s disability services have also been found to be ‘good’.
“I do know that the specific issues that Ms. Isherwood raises are being actively considered.
"The social work team manager continue to engage Ms. Isherwood in conversations about the service provision and what is assessed as being required going forward.
"There are qualified health professionals in the household daily and the occupational therapists have asked them to highlight any urgent risks where action is required.
“I’m assured that the council is offering the services it legally should, and that these are of good quality.”
But Tricy added: "Zach should be on a continuous care plan, the same as he would get if we lived under Nottingham City Council – children there with needs like Zach don’t get discharged.
"It’s basically a postcode lottery as to whether your child gets the care they need – they are letting families down in this area.
"We keep hitting a brick wall, so now we have no choice now but to try and raise money for equipment he needs, as he deserves better – he’s such an amazing little boy.”
Zach’s Crowdfunding page has been set up to raise money for bed adjustments and a folding bath – it can be found here.
The family’s Amazon wishlist, which also contains a number of items the family needs, can be found here.