Edinburgh patients with rare diseases sent to Newcastle

PATIENTS with rare diseases are being forced to make a 220-mile round trip for specialist treatment as recruitment of a new consultant has stalled.

Picture: PA

NHS Lothian is the only health board in Scotland without a consultant immunologist to treat and co-ordinate care of patients with immuno deficiencies, which leave their bodies unable to fight infections.

Immunology services were provided to Lothian by the Scottish National Blood Transfusion Service (SNBTS) until the last consultant retired in 2009. The position has never been filled, despite promises made in September 2014 that a full-time consultant would be hired. Since then, patients have been forced to travel to the Royal Victoria Infirmary, in Newcastle-upon-Tyne, for specialist treatment.

Charity UKPIPS, which supports people with Primary Immune Deficiencies (PIDs), said the current situation was “disgraceful” and patients would be put at serious risk if the situation was not resolved.

Liz Macartney, director and trustee of UKPIPS, said: “Despite repeated assurances from NHS Lothian that it would remedy the situation – Edinburgh is the only capital city in Europe not to have a clinical immunologist to care for patients with rare genetic diseases of the immune system – they have failed to do so.”

PIDs are caused by genetic defects affecting the immune system. Left undiagnosed, these can cause serious damage, and specialists are needed to carry out diagnosis and treatment.

The Evening News understands that recruitment for the position – which could offer an annual salary of more than £100,000 – began last month but has failed to attract suitable candidates thus far. Malcolm Chisholm MSP, co-convener of the cross-party group on rare diseases in the Scottish Parliament, said: “I would be seriously concerned if a consultant has not been appointed very soon. I think the question is why it has taken so long to recruit someone in the first place. There was clearly an unacceptable delay.”

Jim Crombie, chief officer of NHS Lothian acute services, said: “The SNBTS and NHS Lothian are working in close partnership to provide a robust clinical service for patients in Lothian and the wider region and we have arranged for the few patients with complex cases to be assessed by a consultant immunologist in Newcastle.

“Immunology is a highly specialised field and the pool of suitable applicants is a small one. Attempts to recruit a suitably qualified member of staff have not been successful so far.”

Professor Marc Turner, medical director for SNBTS, confirmed that attempts to recruit a clinical lecturer in immunology through Edinburgh University last year had failed but the service was confident they would be able to attract a candidate through a different approach.

He said: “During the recruitment process we will continue to do our best to support patients with immunodeficiency through our current immunoglobulin home therapy service.”