Our second Patient Charter ‘Patient perspectives and priorities on NHS England’s commissioning of medicines for rare diseases’ has now been published. It was produced in collaboration with our patient group members and has been endorsed by 86 of them.
The Patient Charter contains six overarching recommendations for improving how medicines for rare conditions are considered for NHS funding:
- All seven of the appraisal and commissioning routes for rare disease medicines should be considered objectively
- Greater patient voice is essential in decisions as to what should, and what should not be commissioned by NHS England
- NHS England and the patient community need to work together to strategically address the financial sustainability of the commissioning of rare disease medicines
- For NHS England to fulfil its organisational promises to be ‘open and transparent’, ‘prioritise patients in every decision’ and ‘listen and learn’, it must optimise existing communications and engagement platforms
- NHS England’s Clinical Reference Groups should be granted additional resources to support their ability to give expert advice, and enable consistent decision-making and effective stakeholder engagement
- NHS England’s appraisal process needs drastic streamlining and rationalisation to enable timely, patient-focused and transparent commissioning of rare disease medicines