What is the price of a human life? That is the unenviable question which often faces experts on the Scottish Medicines Consortium tasked with deciding which drugs should be made available on the NHS. As the organisation points out, everyone would like to have access to the most effective medicines, but health services have finite budgets. It means the choice can come down to spending thousands of pounds on a drug for just one person with a rare disease to live a few months longer, or using that money on another treatment which could benefit thousands of people.

That seems like a perfectly acceptable argument – until it is you, or your loved one, who is desperately ill and has been denied access to a drug which could offer some hope. It is an issue which is particularly cruel in modern times, when it is no longer a case of ‘doctor knows best’ and patients are easily able to research advances in medicine and arm themselves with knowledge at the click of a mouse.

There is no perfect solution. It is a complex issue, and, of course we have to accept that the NHS does not have unlimited funds. But, as charities have suggested, the system should be one which is doing everything possible to battle for patients, whether that is giving them more of a voice in decision-making or engaging in more proactive negotiations with pharmaceutical companies. The review being carried out by Dr Brian Montgomery, which is expected to be sent to ministers soon, should take on board these views and it is vital any recommendations are implemented as quickly as possible. Time is not on the side of patients who are fighting against rare or incurable diseases. Far too many are also having to battle against a system which in its current form, is inflexible and inconsistent. They need to have a say in their own lives, and deaths.