Money does not cushion grief

Published by The Sun (16th September, 2019)

WHAT kind of person looks at a man who has endured the tragic death of his child – among the most agonising experiences faced by humankind – and accuses them of being privileged in their torment?

The answer, sadly, is the blinkered bigot who penned The Guardian’s unspeakably cruel leader column that claimed David Cameron felt ‘privileged pain’ over the life and death of his profoundly disabled son.

‘Mr Cameron has known pain and failure in his life but it has always been privileged pain,’ opined the paper in a column promoted on its website, claiming the former Prime Minister’s experience of the NHS only involved engagement with ‘better funded parts of the system’.

It added: ‘Had he been trying to get the system to look after a dying parent rather than a dying child, he might have understood a little of the damage that his polices have done.’

The paper apologised after fury erupted on social media.

Such a despicable diatribe was a betrayal of its stance as the leading voice of liberal values that showed how the holier-than-thou paper is snared in the Brexit-fuelled fury seen on all sides that is so devastating our nation.

Yet its publication in such a prominent place, which as a former deputy editor I know would have gone through several more hands first, reveals a wider culture and arrogance that infects too many minds on the Left. Something seen also when a Labour MP says she could never be friends with a Tory, or Unionists cheer the death of a Tory Prime Minister.

The piece of ill-informed nonsense shows how little the paper’s blinkered journalists knew about the experiences of David and Samantha Cameron, who were left devastated by the diagnosis, life of struggle and dreadful sudden death of Ivan, aged six, in 2009.

And it exposes dismal lack of insight into the issues confronted by this couple and thousands more like them — sometimes shared by supposed ‘experts’ who sneer at middle-class families and dismiss their needs. Money does not cushion grief.

I find it hard to imagine how anyone could read the excerpt of Cameron’s biography published at the weekend discussing the short life of his son and not be incredibly moved on the human level that should unite us all — regardless of politics.

It brought tears to my eyes, although I had heard it all before from him and his wife, as well as living through 25 years of similar traumatic experiences. His anguish at carrying his adored son in his arms for the last time was palpable.

Perhaps I am just someone who shares some of Cameron’s ‘privileged pain’ as the privately educated parent of a child with profound disability. Thankfully my daughter has survived complex epilepsy, among other problems, to reach adulthood.

Yet like Cameron, I was plunged into the darkness of despair after the birth of a child with disabilities disrupted my life. Only later did I learn this was a form of grief as parents mourn the child they expected and come to terms with changed realities.

We met soon after Ivan’s birth, a routine lunch between a journalist and MP turning into an intense discussion of shared experiences. Later we spoke about the impact on our lives and politics, even swapping notes on trusted doctors and schools.

Cameron told me of struggling to take in diagnosis of Ivan’s Ohtahara syndrome, when a doctor said their son faced, ‘very serious difficulties’. He asked if this meant Ivan might have trouble with maths or much worse?

‘I’m afraid it means he probably won’t walk or talk,’ replied the paediatrician.

For any family, rich or poor, this moment is a shock as dreams are shattered. Then comes a struggle to hold a family together, to retain jobs and relationships, to fight for education, respite and support in a system that seems often so uncaring.

Your background makes little difference when filling in endless forms with the same details, searching for a school that might take your sick child, struggling with a seizure in a park, trying to find a public toilet to change a soiled pad or banging your head against blasé bureaucrats to win a few hours of respite care to retain sanity.

Even at the world-famous Great Ormond Street Hospital we endured doctors who never read case notes, returned phone calls or responded to emails. One lost key files at a critical time; another was a life-saver I will never forget.

Exhausted families cling to such saviours as they navigate an overloaded, maze-like system filled with officials feuding over budgets. It seems almost as if it is designed to inflame the distress of parents struggling under intense stress.

This is recognised by this newspaper’s Give It Back campaign, demanding the Government plugs a £434million-a-year funding gap and calling for a joined-up care system to help ensure families can live some semblance of normal life.

Cameron wrote about the ‘torture’ of seeing his son’s ‘small frame racked with spasms and what looked like searing pain’ and feeling so helpless to stop the distress.

However many times you see such seizures, the suffering never stops — as I felt again on Sunday afternoon watching my beautiful daughter endure a series of fits that eventually needed emergency medication.

As any parent knows all too well — hearing the hideously familiar screams while seeing the flailing limbs and rolling eyes — epilepsy can be a fatal condition.

There are joys too, of course — but the pain of such parenthood is profound, the agonies seared deep in the soul, the struggles seem remorseless.

And that is for everyone — whether rich or poor.

Categorised in: Disability, home page, Media & technology