Patients in north Wales suffering from rare genetic conditions that affect connective tissue in the body are being denied early access to vital treatment on the Welsh NHS.

That’s according to Mabon ap Gwynfor MS.

A Senedd exchange with the First Minister heard Mr ap Gwynfor say patients living with Ehlers-Danlos Syndrome suffer in agony and have to apply for funding to access specialist care they so badly need.

Mr ap Gwynfor said unacceptably long waiting lists in north Wales were exacerbating suffering, and called on the First Minister to ensure patients are seen without delay.

Mr ap Gwynfor said: “One of the most prominent issues we have in the healthcare provision in north Wales is the long waiting lists. Take Ehlers-Danlos syndrome patients, for example.

“Over the border in England, patients there are referred straightaway to specialists, but Ehlers-Danlos patients in north Wales must make an application for individual patient funding, which is, often, rejected, which means, in turn, they must go without the vital care that they need.

“Do you, First Minister, believe that it's right that Ehlers-Danlos patients have to suffer in this way in north Wales, and will you commit to ensuring that patients in north Wales - and the whole of Wales, are referred directly, without having to wait and make applications for individual funding?”

Ehlers-Danlos Lead Coordinator for Wales, Tasha Evans-Jones added: “Funding is a major issue experienced by those with Ehlers-Danlos Syndrome in Wales. For those in Wales who are complex cases of EDS they may require specialist support through specialist Hypermobility units in England.

“Unfortunately, there are no specialist units in Wales. For those in Wales to access this specialist support the person with EDS must apply for funding through the individual patient funding request system.

“This is very rarely given. Across the border in England a local rheumatologist can refer straight to these specialist units. So, the care for those with EDS is often delayed by many years caught up in this process.

“Over the past 10 years in this role I have found that this funding is rarely given. This added delay and denial of care results in a deterioration in the persons health and wellbeing.”

In his response to Mr ap Gwynfor, the First Minister said he was not aware of the issue but committed to investigating if there is a system-wide change the government could make to address the problem.