A scorecard that was supposed to help the NHS make funding decisions regarding the treatment of rare conditions has now been dropped.
NHS England developed the scorecard earlier this year to compare the merits of different treatments – but confirmed on Wednesday that this would not be used to commission in 2015/2016.
The decision to drop the scorecard follows the threat of a judicial review on the criteria that patients with rare conditions would be at a disadvantage.
A scorecard that was supposed to help the NHS make funding decisions regarding the treatment of rare conditions has now been dropped.
NHS England developed the scorecard earlier this year to compare the merits of different treatments – but confirmed on Wednesday that this would not be used to commission in 2015/2016.
The decision to drop the scorecard follows the threat of a judicial review on the criteria that patients with rare conditions would be at a disadvantage.
Despite this, NHS England will be launching a 90 day consultation next year on its approach to choosing which treatments to fund. This means patients may not know if they can get routine access to drugs for months.
Christine Lavery, chief executive of the Society for Mucopolysaccharide Diseases (MPS Society) said its victory in getting the scorecard dropped was “bittersweet”.
“The ongoing delay means that a number of members who would benefit from treatment are denied access until a funding decision is made.”
John Murray, director of the Specialised Healthcare Alliance, said: “To have such an extended consultation… is very worrying from the perspective of patients who have been waiting for decisions in a number of areas for a long, long time already.”
