Callum ‘victim of postcode lottery’

Stark gaps in care standards, highlighted by a government report this week, between Northern Ireland and elsewhere in the UK is potentially “taking years off the life” of the Limavady toddler, according to his mother.

Laura Smith, whose son Callum has been diagnosed with a particularly serious muscle-wasting disorder known as Duchenne Muscular Dystrophy, had spoken to the Sentinel previously about problems with care services in Northern Ireland.

Those concerns have now been highlighted by a Stormont group investigating care for people with Muscular Dystrophy and related neuromuscular conditions.

Their report, entitled the ‘McCollum Report’ after a boy who died an avoidable death at the age of 16 from the same condition Callum is now suffering from, found that children in Northern Ireland are waiting months for vital appointments, and adults sometimes several years - in contrast with the rest of the UK.

The report also pointed to the fact that the whole of Northern Ireland is served by just one specialist care advisor - a role that has been left empty for six months - while England has funding for 23, Wales three and Scotland three.

Callum’s mother Laura said that the difference in the standard of specialist care between Northern Ireland and the rest of the UK is “taking years off the life of my son. Basically, that is the only way to put it, this is how serious it is.”

She added: “The average age (life expectancy) in Northern Ireland is 17 – in England it is 25. In some places like Denmark people can live until 40. It is due to the Centres of Excellence they have in England, which we haven’t got.”

Laura believes the best way forward is to set up a Centre of Excellence somewhere in Ireland, similar to those in locations such as Newcastle in England. She said: “It depends a lot on where you live (the standard of care). It is like a postcode lottery. What we would like to see happening is a centre of excellence set up, so that everybody sees their whole team in the one place. In the past two months I have travelled to Belfast, Derry, all over the place for appointments. It should be in the one place. Just one for the whole of Ireland, even if it was in Cork, if everything was in the one place it would be much better.

“Having to keep an eye on all those appointments and travel all over the place is not good for Callum and it keeps me from caring for him and doing the job a Mum is supposed to do.”