Rare disease fund scrapped by NHS England

NHS England, Quarry House

NHS England has pulled the plug on a £50 million fund to advance innovation in the investigation and treatment of rare conditions.

The Specialised Services Commissioning Innovation Fund (SSCIF) was first announced in August this year. It was developed to accelerate the adoption of innovative new approaches to specialised services.

The fund was part of the government’s Innovation Health and Wealth (IHW) programme, which since its 2011 launch has failed to prove a great success.

The SSCIF was initially billed as an initiative that would “transform the way that new innovations are identified, tested and adopted”, but that metamorphosis has been put on hold indefinitely.

More than 600 applicants  - including drug manufacturers, patient groups and clinical researchers - made submissions for SSCIF funding.

The scheme was scrapped before candidates were contacted to confirm whether their applications were successful or not.

NHS England was established in April 2013 as a centralised, non-departmental public body responsible for specialist healthcare commissioning in England.

The organisation’s national clinical director of specialised service, James Palmer, attributed the SSCIF’s withdrawal to ‘unplanned expenditure’ encountered during the past six months.

He said: “In order to achieve a nationally consistent approach to commissioning, we have had to bring together differing regional and local approaches to contracting with providers; different sets of standards, and varying levels of access to services around the country - this has been a significant challenge.”

Palmer added that NHS England remains ‘committed to innovation’ and would “seek ways to reinstate the fund in future years”.

Pharma lobby group the ABPI expressed disappointment at the decision. Chief executive Stephen Whitehead said: “We hope that this decision will not stifle innovation and that patients will not miss out on accessing innovative new medicines as a result.” 

He added: “It is important that there are no further cuts or suspensions to the IHW programme as this will almost certainly impact on patients.”

The BBC reports that specialised services in England are allocated about £12 billion per year - or 10% of the health service’s budget. Hundreds of thousands of individuals across England with rare medical conditions benefit from these services.

Hugh McCafferty