Blood disorder failure update

Image by allinonemovie from Pixabay

Strict new deadlines are in place after a 12-year failure of Derbyshire NHS services saw hundreds of families not notified about potential blood disorders.

Last spring, the Local Democracy Reporting Service revealed the Derbyshire NHS failed to tell more than 800 Derbyshire families about the sickle cell carrier status of their babies for 12 years – January 2012 to June 2024.

Sickle cell carrier status means babies with this condition do not have the blood disorder themselves but have the ability to pass it onto their own children.

The process of notifying parents – almost entirely from an African or Caribbean background – about the carrier status of their children had been carried out by a sole employee whose contract was defunded in 2012.

It took a further 12 years for the NHS to realise the function was never transferred to another employee or department.

Councillor Alison Martin, Derby City Council’s cabinet member for health, had called the incident “totally unacceptable” and “appalling” but was unconvinced that lessons had been learned and that the issue was twinned with conversations about “unequal treatment and health inequality” issues.

Officials from the Derbyshire and regional NHS both issued apologies to those affected, saying it should not have happened and that robust policies and that a new service had been commissioned at the University Hospitals of Derby and Burton NHS Foundation Trust as of January last year.

Now officials have updated the city council on the progress of improvements since last year’s apologies.

They say the referral scheme has processed 141 babies, of which 115 have been seen and 20 are waiting, with six records removed due to invalid data.

A new report says the average wait time for newborn babies to be seen is more than 11 weeks – nearly three months, with the longest wait taking more than a year and the shortest just three weeks.

It says between March and July last year the service experienced “significant operational pressures” due to staff sickness and changeovers, but that the previous backlog had been cleared.

The report says NHS England Midlands has worked with NHS England to “ensure learning from the Derbyshire sickle cell newborn blood spot incident was applied nationally”.

It says health legislation now requires parents to receive notice about the sickle cell carrier status of their baby by six weeks of age, along with face-to-face or verbal contact, with letters to be issued as an additional failsafe should initial approaches be unsuccessful.

When the Derbyshire NHS had been trying to contact the families of all 839 babies last year, they were unable to reach the families of 234 babies by phone after four attempted phone calls.

Cllr Nicola Roulstone, chair of the adult health scrutiny committee, said at this week’s meeting: “Ultimately we now have the failsafe of not having only one person dealing with it means we won’t ever be in the circumstance of it going months down the line and contacting those people which then becomes nigh on impossible. 

“We can just hope there are no other services within the NHS that have a similar scenario where they are relying on only one person and it is about people speaking out if they are the only person and they are struggling. 

“It is really difficult because there are lots of people who take on, take on and take on pressures and I think that is where the NHS has gone, where people really try to support the NHS and do their very best but you have to ensure that if you are not there, somebody can take it up.

“Hopefully we will never have a similar scenario.”