Blood disorder failure

For more than a decade the Derbyshire NHS failed to tell families that their babies had a higher chance of giving their own children rare blood disorders, a new report shows.

A report from the Derbyshire NHS and NHS England details how more than 800 families were not told about their baby’s sickle cell carrier status, identified through a heel prick blood test shortly after birth.

This carrier status means that while the babies do not have blood disorders themselves, they do have a higher chance of their own children having rare conditions such as sickle cell disease.

Sickle cell disease is particularly common in people with an African or Caribbean family background, the NHS says.

Between January 2012 and June 2014 a total of 839 families were not told about their child’s sickle cell carrier status, the report details.

It took the Derbyshire NHS 11 years to identify that this duty was not being carried out.

An investigation found that this was all connected to one nurse who had the sole responsibility for issuing results to families who had their role defunded in 2012.

Their duties to notify families were not picked up by a replacement member of staff or organisation for the next 11 years.

To date neither the Derbyshire NHS or NHS England Midlands have issued a public apology but there is said to have been an apology made at a community session on the problems.

Both organisations failed to offer an apology when asked by the Local Democracy Reporting Service, nor did they answer any questions involving the failure to inform parents sooner or issue a wide public awareness campaign – including through the press.

No public discussion on the issue has been held by the Derby and Derbyshire NHS board.

The first red flag about this failure was raised in June 2023 – nearly two years ago – when Sheffield Children’s NHS Foundation Trust told NHS England that they had received a letter from a GP who had refused to give a sickle cell carrier result to a patient.

In response, a health professional was sent to deliver the results to the parents and the incident was closed, the report details.

A second red flag was raised in October 2023 – four months later – when NHS England Midlands received a notification that a parent had just been told of their baby’s carrier status at a routine appointment, having not been told shortly after the baby’s birth in 2021.

In November 2023, NHS England Midlands started an investigation into whether parents were routinely being informed and in a timely manner of their baby’s sickle cell status.

From January to March 2024 it audited the past five years of baby blood test records by contacting the patient’s GPs and – of the 85 per cent who responded – only 57 per cent had recorded that they had told families about carrier results.

In response, a wider investigation involving all Derbyshire NHS bodies, Derbyshire County Council and Derby City Council was launched in April 2024 – nearly a year ago.

It was confident that all families pre-2012 will have been told their baby’s sickle cell status.

The investigation found that between January 1st, 2012, and June 20th, 2024, 839 babies were found to have sickle cell carrier status or carrier status for another blood disorder.

It could not be confirmed how many, if any, of these families had been told.

Letters were sent to all potentially affected families and a helpline was set up, and talks with families took place between July and September 2024 – with 475 families confirming they already knew about the results.

A community event is said to have been hosted by the Derby West Indian Community Association and that NHS England Midlands provided an “apology to the community and families affected by this unfortunate situation prior to providing the detail”.

As of January 1st this year, a new system has now been set up, with all babies to have a heel prick test within 13 days of birth and for Derby and Burton Hospitals Trust to be responsible for issuing results to parents, by letter and email, with telephone and in-person appointments to talk through the guidance.

A further community engagement event is due to take place in May, the report details, with one in Derby and one elsewhere in the county.

In response to the report, Nezrine Hudson, a trustee of the Derby West Indian Association, said: “We are very much aware of how sickle cell affects our community. The issue of parents not being informed about their results I think is quite sad. 

“Parents need to know so they can be prepared and learn how to handle it when it comes.

“Our community should have been informed, and so should we, so we can help and support. It should not be hidden.

“I think there is now a lack of trust. It is disappointing that people have not been told. People will now think twice about what they are told and some trust will have been lost and it will take time to regain that trust.”

An NHS spokesperson said: “All families in Derbyshire impacted have been contacted directly so that they understand what being a carrier means for their children, and we have had a helpline in place for those families affected to contact. The children affected do not have, and will not develop, sickle cell disease.

“A new advice and guidance pathway was introduced from 1 January to ensure all families are informed of their child’s haemoglobinopathy carrier status by week six from birth.”

The Derby and Derbyshire Integrated Care Board, which oversees all health and social care organisations – including the county and city council, did not wish to add to the NHS England statement.