healthmedicinet

By
Anna Hodgekiss

PUBLISHED:

04:20 EST, 13 March 2014

|
UPDATED:

05:19 EST, 13 March 2014

A children’s heart
surgery centre that was temporarily closed last year due to fears over death rates is safe – but has been criticised over a ‘tragic lack of communication, compassion and basic kindness’.

A comprehensive report into care at Leeds General Infirmary (LGI) has led to apologies from both NHS England and the Leeds Teaching Hospitals NHS Trust, which runs the hospital.

The report outlined the experiences of 16 families who complained about care their
children received at the unit, promoting them to have their child’s
treatment transferred to another centre.

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The children’s heart surgery unit at Leeds General Infirmary has been critcised over a ‘tragic lack of communication, compassion and basic kindness’

One mother described how she felt pressurised into having an abortion, which was against her Muslim beliefs. 

A bereaved parent told the investigators: ‘We were given no support by the staff after Annie died. We were given a leaflet. Nobody asked how we were getting home in the early hours of the morning.’

Another described how a book had gone missing in which their son had been writing about his experiences before his death.

‘It was like losing another part of him,’ the parent said. ‘We asked the staff to find it but they told us they could not find it.

‘They didn’t seem bothered. They didn’t seem to realise what it meant to us. We had been going to Leeds for 10 years and no-one has rung to see how we are.’

NHS England said in its overview of the report: ‘We conclude that these families did not get the level of care or service that they deserved and for this we are truly sorry.’

Dr Mike Bewick, deputy medical director
at NHS England, said: ‘At the moment of the death of their child,
parents have felt abandoned. That can’t be right at what is probably the
most devastating and vulnerable point of their lives.

‘Poor treatment’: Jessica Elliott, 12, waited so long for treatment at Leeds for a heart condition that she suffered a stroke

‘I fully appreciate that there will be plenty of good practice out there but we can’t rest until we get this right for every child and their family.’

Michelle Elliott said the unit had been treating her daughter Jessica for 11 years, and two years ago said she needed a transplant.

‘My issue was that it took seven months to get her to the transplant centre, by which time they told us it was almost too late,’ she told BBC Radio 4?s Today programme this morning.

‘We got there on April 2 for what we thought was a second opinion, only to be taken to the small room to be told that actually you are not here for a second opinion, she is very sick and she needs a transplant straight away.’

She received her new heart 27 days later, but in the meantime she had a stroke.

It is the stroke now that is impacting on Jessica’s life, not the heart.

Ms Elliott said: ‘Our argument is that those seven months were wasted, and we could have got her there sooner if I had not been blocked in asking for her to go…

‘From the heart point of view she is doing brilliantly well, but from the stroke point of view she is still not back in mainstream school and she is still using a wheelchair. But her mind is there.

‘We are the lucky ones. There are many parents in the group whose babies and children have died.

‘We want to work now with the trust to make sure other families do not suffer in the way that our family have suffered.’

Ms Elliott added: ‘The mortality report says yes, it is safe, but it is not a clean bill of health. There were numerous recommendations made for the heart unit that they have to fulfil over the coming months.’

The NHS England report came after the temporary halting of operations at the Leeds General Infirmary unit last March.

A swiftly conducted review concluded that surgery was safe to resume a few weeks later and a second phase of the review was started.

The move provoked huge anger and debate, especially as parents and clinicians from the unit linked it to the ongoing controversy about which children’s heart surgery units were to be closed as part of a nationwide rationalisation of the service.

‘MOVING MY SON’S CARE FROM LEEDS SAVED HIS LIFE‘

Hollie Pearson says moving her son George from the LGI to Newcastle’s Freeman Hospital probably saved his life.

The
19-year-old watched her son George’s condition steadily worsen after he
was born in Leeds with four heart defects.

Hollie with her son George. The mother said that his personality has come out since receiving treatment in Newcastle

After
an operation at eight weeks old, George was placed on a ‘palliative
care pathway’, meaning his life could be prolonged but his condition
would not be cured.

Hollie
and her mother, Nicola Garbutt, 42, became concerned at George’s
listless state, frequent breathlessness and bluish pallor, but trusted
the doctors caring for him.

But
in January 2013, Hollie’s elder sister Emily, 22, home from university,
urged her mother: ‘Mum, act quickly please, George looks dead.’

Nicola
said: ‘I’d done my homework and spoken to other parents and they just
told me to get him to Newcastle, so that’s what I did. 

‘I
insisted to LGI that they transfer him. Although they did try and put
us off and said it was a bad idea because it could take days for all the
notes to be sent, they did refer him there.

‘But my point is that
patients shouldn’t have to push for that – they should always be offered
a second opinion somewhere else in complicated cases.’

Just two
days after he arrived at Freeman Hospital in Newcastle, George’s
astonished family were told his poorly heart could be fixed.

Nicola
said: ‘At this point we had lived a year knowing George was on
palliative care only.  The thought he could be taken away at any time is
any parent’s nightmare.’

Hollie, a student nurse from Skipton,
North Yorkshire, whose studies were put on hold by George’s arrival,
said the transformation in her son since his operation was amazing.

‘I’ve
really got to know him in the last few weeks and he’s developed a
personality which you couldn’t really see before as he was always crying
or asleep.

He’s a different boy and I’m so glad my mum pushed for us to
be transferred.’

The LGI unit had been earmarked for
closure, along with two others in Leicester and the Royal Brompton in
west London as part of a nationwide plan to streamline children’s
cardiac surgery into fewer, more specialised units.

Patients from Leeds were to be transferred to Newcastle’s Freeman Hospital.

But,
after a fierce campaign by some parents whose children were treated at
the LGI and two legal challenges, Health Secretary Jeremy Hunt halted
the plan and ordered NHS England to re-evaluate the whole process.

Dr Yvette Oade, the chief
medical officer at Leeds Teaching Hospitals, said: ‘We are pleased for
our patients, families and staff that the Mortality Case Review has
confirmed the medical and surgical care provided by the children’s heart
surgery unit in Leeds is safe.

‘We are very sorry however that the 16 families who shared their stories with the Family Experience Review felt we did not provide the care they had a right to expect.

 
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