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  • "Man on the Green is very correct in his fears. As a now retired local authority accountant I have experienced how past government reforms (Labour & Tory) to delegate funding from central resources to local have subsequently been followed up by budget cuts and central government just says its up nto local decison makers to balance their books and decide where to make service cuts. One of the most common ways central government works is to encourage local authorities to spend more on a particular service is to give a specific ear-marked grant to partially cover the extra spend. Then after afew years they say they are merging that grant into the general grant. But after that they cut back the general grant and say that the local authority has more money and that is true for the general grant but they conveniently forget the lost ear-marked grant. The specific Rural Bus Services grtant is the latest to be caught in this trap as it is being merged into the genral grant from 1 April 2012. Just watch how rural bus services will be cut back in the future as general grant reductions are reduced and local authorities will be forced to make more very difficult decisions. Government will just say its up to the local authorities having conveniently passed the cuts decision process away. If the NHS reforms go through the local doctors orgaisations will have the awkward decisions to make imposed on them from above with central government saying you must be more efficient."
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‘I passed incurable disease to my son’

11:00am Friday 2nd March 2012 in Witney

Martin Balfour-Allen and his son Samuel have both been diagnosed with a rare disease called Tuberous Sclerosis Martin Balfour-Allen and his son Samuel have both been diagnosed with a rare disease called Tuberous Sclerosis

TO discover your baby has an incurable rare genetic disease must be devastating for any parent.

But for Martin Balfour-Allen, the shock of discovering his son Samuel had the life-changing Tuberous Sclerosis was even worse.

That is because the 36-year-old had gone most of his life without realising he too had the condition, and had unknowingly passed it on to his child.

Tuberous Sclerosis (TS) causes growths to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs.

It is so rare that only one person per year is diagnosed with it in Oxfordshire and there are currently thought to be only about 50 sufferers across the county.

But the consequences of the illness can be devastating.

When Samuel started experiencing convulsions at the age of six months, Mr Balfour-Allen and his wife Sally immediately took him to see their GP.

The infantile spasms, which made it look as if Samuel was experiencing a painful ‘wince’, were dismissed several times as a symptom of teething pain.

It was only after months of further fitting the the Balfour-Allens from Witney took a video of their son having a spasm.

They then took it to their GP who diagnosed epilepsy, which can be caused by TS. A consultant later confirmed Samuel did have TS.

At the same time Mr Balfour-Allen, who lost a kidney 12 years ago because of a tumour, realised his own medical history of serious kidney, eye and skin problems, were also signs of TS, which had been missed over the years by successive doctors.

Mr Balfour-Allen said he feared the delayed diagnoses may have contributed to his son’s current condition.

The couple also have a daughter called Gabriella, six, who is unaffected by the condition.

He said: “When Samuel was finally diagnosed, I realised that the health issues I’ve experienced probably meant I had TS too.

“Looking back, I believe the doctors could and should have spotted my TS earlier.

“Had they done so not only would my own health problems have been better managed but more importantly my son would have been diagnosed at birth and could have received treatment that may very well have prevented the damaging seizures that have so profoundly affected him.”

Samuel, now five, has the development age of a one-year-old, severe learning disabilities and autism.

There is no TS specialist clinic in Oxfordshire and they are currently facing a battle to persuade NHS Oxfordshire, the county’s primary care trust, to approve a referral to a specialist clinic in Bath.

NHS Oxfordshire said the case was being considered by a specialist panel.

A decision would be taken over the next few weeks.

Mr Balfour-Allen said: “No one should have to fight for access to healthcare for their child.”

awilliams@oxfordmail.co.uk

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