Karin Smyth

I thank my hon. Friend for that constructive suggestion. We need to wait to see how the NICE recommendation goes in July. With this disease and so many others, it is important to share learning and information, and trusts should be encouraged and supported in doing so. We will work with him on that constructive recommendation. I understand my hon. Friend’s concerns about the fact that non-ambulant patients are not yet able to access givinostat, but it is important to note that the eligibility criteria for participation in the early access programmes have been determined by the pharmaceutical company. NHS trusts that decide to participate in the EAP must only provide treatment in line with the criteria, which state that patients must be ambulant. A clinical trial is being carried out by the pharmaceutical company to evaluate the safety and tolerability of the drug in non-ambulant patients, and to further explore the efficacy of the drug in this population. I know that for the patients and families affected, it will be disappointing to hear that there is no access to the drug for ambulant patients before a NICE decision, or for non-ambulant patients prior to clinical trials being concluded. I want to assure my hon. Friend that we have arrangements in place to support rapid access to new medicines.