Searching for a cure, Improving lives

Pushing for answers from NHS England on PPRS

Posted on: September 7th, 2015 | 0 comments

After receiving a reply to our Freedom of Information Request to Her Majesty’s Treasury, Action Duchenne are continuing investigations into the use of Pharmaceutical Price Regulation Scheme (PPRS) payments by NHS England.

The PPRS  was established to tackle issues of affordability arising from price growth in branded medicine. However, in advance of NHS England’s decision to deny funding approval for 13 treatments in June, including Translarna, James Palmer (Clinical Director of Specialised Commissioning) stated that specialised services were not allocated a boost in resources to deal with the growth in cost for drugs.


However, after a Freedom of Information Request to the Treasury we have determined that NHS England received £796 million from PPRS payments for 2015/16 and that this money has been allocated out to all commissioners who are, “free to invest their allocated funding to deliver improved outcomes as they see fit”.

As such, we have sought clarification from Mr Palmer over how much money specialised services were allocated from this overall sum. If it was a small figure, as his above statement suggests, we have ground to challenge the marginalised position of rare diseases treatments within the PPRS framework. Conversely, if Specialised Services received sufficient funds to tackle questions of affordability, but subsequently failed to do so, then we are in position to challenge NHS England conduct over blatant misuse of funds.

Indeed, NHS England guidance states that PPRS payments should allow the commissioning focus to “shift from cost-saving onto securing better patient outcomes and value”, whilst allowing commissioners to “disengage from cost-containment measures”. It is clear from our experiences with Translarna that this has failed to happen within the commissioning of specialised services.


To read our full letter to James Palmer, please click the link below.

NHS England PPRS Letter


Translarna- What else are we doing? 

– We have further submitted Freedom of Information Requests to NHS England in an attempt to access minutes from their CPAG meetings in June. This will shed light on discussions over Translarna and reveal why the treatment was denied funding.

– These investigatory efforts will allow us to submit a detailed complaint, both to Health Secretary Jeremy Hunt, and the Parliamentary and Health Service Ombudsman, who deal with improper or unfair acts or poor service from central government and NHS England. The conduct and misguidance from NHS England throughout this process must continue to be challenged, and senior figures must be held to account!

– Translarna is still to be evaluated by NICE via their Highly Specialised Technology Route and will be subject to their Evaluation Committee on September 17. Action Duchenne will be in attendance for this meeting which will be additionally informed by our nominated patient expert. We are expecting an interim decision on funding on November 17 and we will continue to do everything possible to ensure this decision is positive.


For more information on the ongoing campaign for access to Translarna, and how you can get involved, please contact, Aaron Revel (Campaigns Officer) on 020 8556 9955 or via

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