Lizzy Buchan: Transparency needed on new NHS medicines

When it comes to expensive medicines that can prolong life by a few months or give someone better quality of life, then it becomes a question that cannot be ignored.

The unhappy task of balancing the tantalising promise of new and expensive drugs with the needs of the wider health service lies with the Scottish Medicines Consortium (SMC), which has been the subject of a year-long review commissioned by the Scottish Government.

Former NHS Fife chief executive Dr Brian Montgomery’s report, published yesterday, could not have come at a more appropriate time after a string of stories brought the issue right up the agenda.

The late AA Gill wrote in his final column how he had been denied access to a transformative lung cancer drug on the English NHS, despite it being available in Scotland.

Days later, breast cancer patients in Scotland were refused a drug which can shrink tumours before surgery. It was approved south of the Border last month.

Life is not fair and everyone faces a lottery of birth, surroundings, genetics and luck to determine their chances in life. But the health service has to be fair. It cannot function by doling out favours here and there, or allowing inequalities to persist.

This week it was also revealed that the First Minister’s office intervened in the case of Anne Maclean-Chang after a national newspaper told of how she had been refused access to the breast cancer drug Kadcyla.

This is not to criticise Mrs Maclean-Chang, who was brave to speak out and whose contribution had undoubtedly pushed the issue of drug funding to the top of the government’s agenda.

Nor is it necessarily fair to criticise Nicola Sturgeon for allowing this woman more time with her family. What is wrong here is the lack of transparency.

Everyone knows that there is a squeeze on NHS resources but decisions about life-saving drugs cannot be made behind closed doors.

It undermines confidence in the system, which many campaigners describe as “broken”.

Lesley Stephen, a mother-of-four from Edinburgh with secondary breast cancer, described how let down she felt when she discovered other patients were receiving access to Kadcyla.

I do not wish to pit patients against each other, as they all deserve our support, but the system is at fault if it allows those who shout loudest to do best.

Many people with a terminal diagnosis are facing the fight of the lives just to stay alive and they may not have the strength to also take on Scotland’s drugs system.

Dr Montgomery’s report makes welcome recommendations for an overhaul of how decisions are communicated, patient involvement and the levels of secrecy in decision-making.

It also calls for new powers to allow the NHS to negotiate costs with drugs companies, who also need to think long and hard about their prices.

Health Secretary Shona Robison also promised a national appeal process on individual requests which should reassure patients they are getting a fair hearing.

These ideas are long overdue and must be implemented quickly to restore public confidence in the system.

The SMC needs to be able to make tough decisions and making their reasoning more public will help people understand what the NHS can pay for.