An little boy from Corby who has astounded doctors who believed he would die in infanthood is being failed by those responsible for commissioning his care, according to his heartbroken family.
Five-year-old Logan Barton was born in March 2013 with a vanishingly rare chromosome deletion and an extensive list of chronic, potentially fatal, illnesses.
He needs round-the-clock care which his mum Wendy Barton says Corby NHS Clinical Commissioning Group is failing to find for him.
She says that instead of providing him with the care package he is entitled to, a string of delays and errors have occurred, resulting in the CCG threatening to go to court to get an emergency protection order which gives them the power to remove Logan from the care of his family.
Wendy said: “Imagine how it feels that when your little warrior son fights to simply exist every single day that, as his parents, we have to also fight for the services and care he is fully entitled to by law, and do battle with those who fail him so very badly.
“Our already limited time with our precious darling boy is being robbed from us.
When Logan was born in March 2013 his parents believed him to be well. But at five months he had a huge seizure and he stopped breathing.
Wendy said: “We thought we had lost our baby boy there and then while we waited for the ambulance to arrive.”
It was later discovered that Logan has a catastrophic and life limiting form of epilepsy called MPSI, is one of only two people in the world with a rare chromosome deletion, and has a chronic pain condition which leaves him reliant on large doses of daily opioids. He also has lung, kidney, digestive, and bladder problems and is immune-suppressed.
Corby CCG is responsible for meeting Logan’s assessed level of need and Wendy says that, for three years, they have failed to meet their obligations.
In 2015, and in every care assessment since then, Logan was shown to need 24/7 nursing care.
The CCG has used its Any Qualified Provider (AQP) list of pre-approved care providers to find three different care providers for Logan since 2015.
But his family says they were approved without family input meaning that they didn’t have the skills needed to look after Logan or couldn’t provide the number of hours he needed care for.
Wendy said: “Under one of these AQP Providers our little boy suffered more than 40 safeguarding incidents.
“Such incidents included numerous drug errors, feeding tubes pulled out of his stomach requiring surgery, a fall from a cot, and even an intensive care admission where Logan was left fighting for his life.”
“Corby CCG have stated in writing to us that children like Logan typically remain and live out their lives in hospital. They have also repeatedly told us that Logan is the most complex child in Northamptonshire and that the budget required for him far exceeds any other child in the county.”
“These comments are not only insensitive and hurtful but also unethical.”
Wendy says nurses have been unable to cope with caring for Logan’s portacath access (a device under the skin attached to his arteries to give medicine quickly), his intravenous medication, immunotherapy infusions and injections and rescue medications for his seizures.
This resulted in Wendy becoming housebound even when a nurse was on the premises.
She added: “The school run for our eldest son, 7-year old Toby, is the furthest I could venture - which is just a ten minute walk away.”
A new contractor appointed last December could not meet the required hours, leaving 87 uncovered 12 hour shifts.
They family was then given notice by that provider, but the CCG did not commission another one, despite Wendy putting forward a CQC registered ‘good’ provider that she had been in contact with for months.
Wendy added: “As a family we felt confident they understood the problems of the past, and could demonstrate how they could deliver.”
She says that the CCG asked the new provider to take over in June with less than a week’s notice.
The provider said they couldn’t be ready to take on such a complex case in only a few days.
But on June 5 Wendy says the CCG then threatened them with an Emergency Protection Order (EPO) and made an unannounced visit to their home. An EPO gives authorities the power to take control of parts of a child’s welfare and can include removing the child from parents’ care.
Then the new provider was lost because of the time delay.
Wendy added: “We also lost another five nurses the family put forward to join the Care Package. To date, we have lost nine potential nursing staff.”
Then in August the CCG said the family’s provider didn’t meet their due diligence requirements.
The family contests the reasons behind this and are challenging them through their solicitor.
Wendy says she has raised all of her concerns with the CCG, social services, her GP, NHS England, the CQC, the Royal College of Nursing and even the police. All have redirected her back to the CCG.
After the family instructed a solicitor, the CCG also instructed a legal team from London.
Wendy added: “What is just heartbreaking is that we are sleep-deprived, stressed beyond belief with the constant threats of Emergency Protection Orders and the utter lack of any empathy or respect shown to our family.
“These threats to remove a vulnerable child from his home, separate him from his brother and place him into hospital or a hospice is just shameful.
“We would never allow this to happen as it is a huge risk to Logan’s health and safety as he is immune suppressed.
“It is an absolute disgrace and we can no longer keep quiet.”
In a statement, a Corby CCG spokesman said: “This is a very complex case, and our respect for the confidentiality of all concerned means that we are limited in what we can say. The CCG has worked very hard to ensure an appropriate package of care is in place which supports the family in keeping their child at home, in line with their wishes. This has involved dedicated case workers and NHS-funded around the clock care.
“The requirements of care are so intensive and specialised that few organisations can deliver it. The previous provider of care withdrew as they were unable to deliver care to the child in line with the family’s requirements. Since then, the CCG has been working to identify a suitable provider who can meet the family’s needs and expectations. That process is ongoing.
“We will carry on working with the family to try and find a solution they find acceptable. We will continue to look at all options to ensure that the care available is based on the current needs of this child and commissioned in the context of our responsibilities.”
After hearing what the CCG had to say, Wendy said that communication has broken down with their dedicated caseworker who will now only communicate via the CCG solicitor. She added that Logan has not received round-the-clock care for the past nine months.
She added: “The CCGs statement has infuriated us. Once again, Corby CCG is attempting to shift the blame of their failings onto the family. The previous provider was commissioned without due diligence to ensure they would be able to deliver Logan’s assessed level of care needs.
“This is not a “family requirement” or “preference”, this is a statutory obligation for the CCG to deliver an assessed level of care.” The family’s plight is documented on their Facebook page.