Ms Averil Power:

I will answer some questions and my colleague, Mr. Buggy, will answer the rest. Deputy Brassil asked about access to medicines. There is no doubt that there is huge potential for personalised medicines to transform patient experiences and outcomes. It is particularly stressful for patients, especially those with a terminal diagnosis, to know that there is a new medicine that could either save or extend their lives but which they cannot access, particularly in circumstances where the same medicine is available across the water through the NHS. It is a big issue and it is a growing issue. Patients feel that they are caught in the middle between the Government and the industry.

The National Centre for Pharmacoeconomics, NCPE, has quite a transparent process which looks at the data and interrogates the proposition put forward by pharmaceutical companies. After the recommendation is made it goes to the Department and then into the political system, which is a black hole. There is a sense among patients that decisions are very political and that there is no fairness to the process. It seems to be a case of shouting the loudest, which is an approach that is particularly distressing for patients. We need a fair system that is based on data, one in which a patient can be confident that if his or her doctor believes that his or her particular type of cancer will respond to a new medication he or she will be able to get access to it. These medicines are expensive, and they do not work for everybody. We need to educate patients in that area because sometimes they read about so-called miracle drugs through the media and believe that because it has worked for one patient with a particular type of cancer it will work for them as well. Unfortunately that is not the case. Where the data is strong enough, however, and where the NCPE is satisfied that there is a clinical and pharmacoeconomical benefit to providing that medicine it should be provided. That is a big issue.