The Sunday Times - UK (2022-04-24)

10 The Sunday Times April 24, 2022

NEWS

MPs are to investigate why an epilepsy

drug is still being prescribed to pregnant

women despite having been linked to

birth defects for decades.

Sodium valproate should not be taken

during pregnancy unless no other treat-

ment is available but has been given to

women without proper warnings. As

has foetal valproate syndrome. “When I

got pregnant with Ethan, I went to the

doctors and they referred me to my neu-

rologist. When I got there, he said, ‘Who

allowed you to get pregnant on these tab-

lets?’” she said. “I was shocked by his

reaction, because nobody had said any-

thing before that.”

Despite the known risks at the time,

she was told to continue taking valproate:

“I followed their advice. I trusted them.”

Her son, now 11, did not walk or talk

Saffron and

Richard Palmer

with their

daughter Caitlin,

18, who was left

with a number of

issues, including

severe learning

difficulties

until he was three and a half and still has

difficulties with both. He has autistic

traits and problems with fine motor skills

and learning.

“I’m never going to be able to work

full-time or have a career. We still don’t

know whether he will be able to live inde-

pendently or whether he will be with us

for the rest of his life. He is very vulnera-

ble,” Williams said. “I struggle with guilt

because I put those tablets in my mouth

but you trust your doctors.”

The law firm Leigh Day is investigating

ten cases against the NHS but Maria Pan-

teli, a partner at the firm, said a negli-

gence claim was not a solution for most

victims.

She said she was concerned at the cre-

ation of a “two-tier system with some of

those affected by the drug able to get

compensation and some not”, adding:

“For the vast majority of these families,

litigation is not a solution that is possible

for them.”

Saffron Palmer, 52, and her husband

Richard, 55, from Stone in Staffordshire,

were forced in 2019 to sell their four-bed-

roomed house where they had lived for

20 years because of financial pressures.

Their daughter, Caitlin, 18, has been

diagnosed with foetal valproate syn-

drome and was born with a range of

issues including a cleft palate and at 15

had surgery to correct a curvature and

twisting of her spine, common to val-

proate victims. She also has severe learn-

ing difficulties and autism.

“It was our family home,” Palmer said,

adding: “Things were really difficult and

we were struggling with money. I can’t

work. I can’t go anywhere. My life is her.”

Palmer said she was never warned

about the serious risks to babies, adding:

“I’m angry I wasn’t told about valproate

but I am also angry at the government

because all I am thinking is, ‘What hap-

pens when I am not here?’

“Caitlin will never be able to live on her

own. I wouldn’t change her, we love her.

But it makes me angry when you see her

suffering through all these things and it

was avoidable and they won’t admit it

and put a plan in place for her so we can

relax and know she will be looked after.”

Emma Murphy, from the In-Fact cam-

paign group, which represents 2,

families harmed by valproate, said the

suggestion that families could bring neg-

ligence claims was a “distraction tech-

nique”, adding: “It is very disingenuous.

We have proved the fault lies with the reg-

ulators and the Department of Health.

Trying to shift the blame to the NHS is

wrong.”

In a letter to MPs, the patient safety

minister Maria Caulfield has insisted clin-

ical negligence claims against the NHS are

the best route for victims, although many

have failed because of the lack of clear

information given to doctors during the

decades after valproate was licensed.

Sodium valproate is an effective drug

and women should not stop taking it

without first speaking to their doctor as

epilepsy itself can be life-threatening for

mothers and babies.

It was licensed for use in the UK in 1973

after the thalidomide scandal. The UK

committee on safety of medicines

decided patients should be kept in the

dark about risks it posed to unborn

babies. Last week, The Sunday Times

revealed that six babies a month are still

being born after exposure to sodium val-

proate with required information leaflets

missing from some drug packets.

Boris Johnson has promised families a

meeting with ministers.

@ShaunLintern

Three quarters

of Covid hospital

patients still suffer

More than 70 per cent of

those admitted to hospital

because of Covid-19 are

suffering complications from

the virus a year later,

according to a study of

patients at 39 NHS hospitals.

The most common

ongoing symptoms from long

Covid include fatigue, muscle

pain, physically slowing

down, poor sleep and

breathlessness.

Women, those who were

obese and those put on a

ventilator were all less likely

to be fully recovered a year

after being discharged.

For the research, revealed

at the European Congress of

Clinical Microbiology &

Infectious Diseases and

published in the Lancet

Respiratory Medicine journal,

807 patients were assessed

five months and then a year

after being discharged

between March 2020 and

April last year. With an

average age of 59, a third of

the group were women and

28 per cent had been

ventilated. Only 29 per cent

were fully recovered a year

after leaving hospital.

There is no official

definition of long Covid.

Patients suffer a catalogue of

symptoms that vary between

people. Some report brain

fog and cognitive difficulties.

Others have severe organ

damage.

Blood tests showed that

the patients had signs of

persistent inflammation

throughout their body. The

study authors, from Leicester

Biomedical Research Centre,

said: “Our study highlights an

urgent need for healthcare

services to support this large

and rapidly increasing patient

population in whom a

substantial burden of

symptoms exist. Without

effective treatments, long

Covid could become a highly

prevalent new long-term

condition.”

It is not only reported in

patients who were admitted

to hospital. This month’s data

shows that the numbers

reporting symptoms more

than four weeks after

infection have risen to

1.7 million. Of those, almost

800,000 have had symptoms

for longer than a year.

NHS England has

established a network of long

Covid clinics to treat patients

but many are struggling to

cope with the numbers and

lack of clear treatment.

@ShaunLintern

Shaun Lintern

Fatigue and muscle pain

are common symptoms

Trying to

shift

blame on

to the NHS

is wrong

Shaun Lintern Health Editor

ANDREW FOX FOR THE SUNDAY TIMES

many as 20,000 babies are thought to

have been born with physical deformities

and neurological problems as a result.

Families affected by the scandal have

been struggling to get financial help. The

government is refusing to offer any com-

pensation and lawyers say bringing a suc-

cessful negligence action against the NHS

is difficult because for many years guide-

lines for doctors were not clear on when

to warn women about the risks.

Now the Commons health select com-

mittee is to hold an inquiry that asks why

ministers failed to act on calls for finan-

cial redress made in a 2020 government

report.

Jeremy Hunt, the committee chair-

man, said: “Following reports in The Sun-

day Times last week about valproate still

being prescribed to pregnant women,

the select committee have decided to

hold an emergency hearing in June. I

Urgent inquiry launched

into birth-defect drug

MPs will investigate why pregnant women are still being given sodium

valproate after a Sunday Times investigation into a decades-long scandal

believe ministers must now face up to

their responsibilities to these families

including looking at the issue of financial

redress... We will also be seeking

answers on why this scandal has per-

sisted for so long unchecked.”

A total of 127 negligence claims have

been made against the health service up

to March 31 this year, with 120 cases

closed and a total of £14.6 million paid

out. In some cases, parents have been

forced to sell their homes because of

money troubles caused by being unable

to work and caring full-time for their chil-

dren left disabled.

Louise Williams, 41, from Worcester, is

bringing a claim against the NHS. She was

diagnosed with epilepsy and took

sodium valproate from the age of one.

But she was never warned about the risks

during pregnancy and her son Ethan-

James was born in December 2010. He

I see my

daughter

suffering

but they

won’t

help her