Lords debate on rare diseases - SHCA briefing


On Tuesday 3rd March, Lord Turnberg led a short debate in the House of Lords on access to treatment for people with rare diseases.

The debate covered a number of important issues, including the desire for greater clarity on NHS England’s internal structures and processes.

The lack of patient access to new treatments pending the outcome of NHS England’s ongoing consultation on principles for investing in specialised services was also raised, without assurances from the Minister on the issue.

The Specialised Healthcare Alliance provided briefing to Peers ahead of the debate and drew particular attention to the patients left in limbo by the ongoing consultation without recourse to interim funding.

You can read the Alliance’s debate briefing here: SHCA Briefing – Lords Debate on Rare Disease Treatment Access