Righting a Wrong

Changing government policy can often take too long.

Eighteen months ago, a group of petitioners appeared before parliament, to raise serious concerns about the challenges that people with rare conditions face, in accessing medicines that can dramatically improve their lives, and which are available in other parts of the UK.

They expressed their frustration at a system that was complex, bureaucratic, full of delay and one which left patients’ heart broken.

In response, others rallied to the cause, including Joyce Juszczak and the late Anne Fisher who helped keep up the pressure for change.

The Parliament’s health committee which I convene then launched an investigation, and published a range of recommendations after hearing the views of patients, families and doctors.

Subsequently, things began to change at a pace. The Scottish Government ordered the Routledge and Swainson reviews and announced a twenty million pounds rare drugs fund.

And just last week, the government accepted the committee’s recommendations, signalling its intention to give people who suffer from rare conditions and cancers the greater access to treatment and support that they deserve.

Speaking during the debate in parliament, I welcomed the government’s change of direction and I am hopeful that it will lead to significant progress being made in the future. However, as ever, the devil will be in the detail.

The work of the committee, the announcement by the government, and the consensus in the debating chamber was met with plaudits and heralded as a cause for celebration.

This is all very well and good, but we shouldn’t forget why we were there in the first place. We were righting a wrong of a policy that was implemented and defended by the government and one which did not serve patients well.