report into the Alder Hey organs scandal has created a national outcry
about body parts stored in hospitals. As Chris Mahony reports the
scandal has also re-opened the debate about effective communications
within the NHS.
As a name for a pressure group, Parents who Inter Their Young Twice
(Pity II) is pretty startling. But it captures the emotional atmosphere
preceding last week's publication of the report into the Alder Hey
stored organs scandal.
Dozens of PR teams around the country are now facing similar challenges
after health ministers published a 'census' of organs and other body
parts removed and stored without the informed consent of relatives.
Restoring public confidence is sometimes not helped by the doctors
A senior pathologist recently warned that a downturn in organ
availability after publicity about the scandal would 'be a high price to
pay'. He may have been right - the trouble was he was speaking at a
government-organised summit which had heard agonising personal stories
It was hardly a surprise that the next Alder Hey parent to speak
observed: 'I buried my daughter for the third time before Christmas - I
think that is a high price to pay.'
It was symbolic of the cultural clash between devastated parents and the
mostly well meaning but sometimes unworldly world of medicine.
Great Ormond Street Hospital NHS Trust chief press officer Stephen Cox
gives another example: 'I have heard doctors say we should ask parents
to sign post mortem consent forms when the child comes into hospital.
You pick yourself up off the floor and explain you are dealing with
Cox says that his role is straightforward: providing clear and honest
'I think in future this story will be taught as a textbook example of
how you can't spin your way out of a problem. We will get through this
by being honest with parents. It is not about me giving a nice statement
to the press, but about making sure the helpline is working. You can't
talk about a PR operation - it is internal and external
His hospital has already been dealing with the issue for at least a
Bereaved parents are promised a reply later this month. They are also
asked if they would prefer to hear the news by letter, phone or
face-to-face from a nurse.
He insists this reactive approach, waiting for parents to call, is the
correct one: 'It is a mistake to assume every parent wants to know. To
get in touch prematurely is cruel.'
Jonathan Street, whose PR company's contract with Alder Hey was
cancelled just weeks before the report was published, is advising his
other clients named by the organ census to be as open as possible.
'The trouble is that what hospitals can't tell relatives in the first
call is exactly what they want to know: 'Are you keeping our relatives'
He says that trusts are quite rightly following national orders in
setting up helplines and compiling a record of retained tissue.
But Street warns the Alder Hey experience shows that the latter is a
painstaking process - something that must be explained to the local
media: 'The worst thing you can do is give out inadequate or possibly
wrong information (to relatives). Trusts must tell the local media that
this is something that cannot be done overnight.
'Alder Hey was under enormous pressure to give information and the
mistake they made was to give information that was incomplete,' he
As a result, body parts were returned on a piecemeal basis and families
were forced to hold up to four funerals for the same child. He backs the
trust's offer to fund these further funerals.
Street's view of Alder Hey's communications performance is more positive
than that outlined in Michael Redfern's report. Redfern concluded that
'parents only received information if they asked for it and many did not
know what to ask for in the first place'.
Distraught parents saw the hospital as obstructive and evasive. When top
Alder Hey managers left the London summit early, one mother lashed out
physically. Their decision to leave just as the discussion was thrown
open to the floor was a stunning miscalculation which left the
Government's top doctor, chief medical adviser Liam Donaldson, almost
speechless with frustration.
Despite the protestations of some parents that the summit was a
whitewash, it did carry the air of a collective mea culpa by both
medicine and government - a unique event in the history of the NHS.
The public sector is often accused of defensiveness and obsessive
secrecy and PRCA chairman Dr Tom Watson is among the critics: 'Sadly it
(the NHS) often takes a minimalist, reaction-only approach to PR when
issues are complex. The results are often disastrous to the NHS's
reputation. This approach starts at the top of the NHS and percolates
all the way down to frontline services.'
With the exception of Great Ormond Street, trust PR bosses approached
for this piece reverted to type, either not returning telephone calls or
referring to local press releases co-ordinated through the Department of
Health and the Central Office of Information.
Each release apologised and gave helpline numbers but without explaining
that the process of cataloguing could take some time. They did however
emphasise the value of research and teaching with organs.
Perhaps this pitiful story is a start in fulfilling the communicator's
role as a bridge between two very different worlds.