Patients are being denied access to life changing treatments because parts of NHS England’s “Kafkaesque” commissioning regime appear to have ground to a halt, clinicians and charities have warned.

HSJ has discovered at least two groups of patients unable to access drugs their doctors want to prescribe as NHS England is yet to finalise commissioning policies for the treatments.

Pills in packet

Fifty patients with Parkinson’s have been denied access to drugs

While clinicians can make “individual funding requests” for drugs or treatments lacking an NHS England commissioning policy, these are only approved in exceptional cases. Alastair Kent, director of the charity Genetic Alliance, said the situation exposed a gap in the NHS England’s regime for approving new treatments.

“Any [new treatments] that come forward are stuck at the starting gate because NHS England’s primary emphasis has been getting itself out of the financial hole,” he said.

The commissioning body ended 2013-14 with a deficit of £377m on its specialised commissioning budget and is currently forecasting an overspend of £167m for 2014-15.

Patients denied treatments because of the hold-ups include 80 suffering from tuberous sclerosis complex denied access to everolimus. The second group of around 50 patients have Parkinson’s disease but do not respond to available treatments. Some of these are denied access to the drug Duodopa.

Jayne Spink, chief executive of the Tuberous Sclerosis Association, says it is “Kafkaesque” that clinicians had to submit requests, despite knowing they would be rejected.

A business case for everolimus produced in August 2013 has yet to be considered by NHS England.

Dr Chris Kingswood, a renal consultant at Brighton and Sussex University Hospitals Trust, has submitted 32 requests over the last year for the drug, including 20 urgent cases where patients were at significant risk of kidney failure or internal bleeding.

As a member of NHS England’s multisystem disorder clinical reference group Dr Kingswood helped draw up its business case. “I would be a lot less angry and upset if they would just look at it [the business case],” he said.

Dr Neil Archibald, a consultant neurologist at South Tees Hospitals Trust, said he had made two requests seeking funding for the Parkinson’s drug Duodopa. Both had been refused.

Duodopa was funded in some parts of England before NHS England took over specialised commissioning and is widely used in Europe.

A spokesperson from NHS England said it was “not the case that NHS England’s specialised commissioning policies have been put on hold”.

“Both Duodopa for Parkinson’s disease and everolimus for tuberous sclerosis were included in the programme of policies for development in 2014 to be considered for funding in 2015-16.

“NHS England will confirm its funding commitments for new services in early 2015.”