A matter of life and death Scots patients battle to gain access to life-saving new drugs on NHS
SPECIAL REPORT
BY JUDITH DUFFY
NONE of us should have to face the experience that Lesley Stephen went through. Diagnosed with incurable breast cancer, she faced a battle not only to stay alive but also to obtain a drug which could extend her life by months, if not years. Her world collapsed, though, when the NHS told her that she would not be getting the drug – as it wasn’t approved in Scotland.
Devastated, she spent thousands of pounds of her life savings to access the drug. “It is hard enough physically and emotionally to deal with the cancer,” she says, “but knowing there is a drug that could be a real wonder drug for you but you can’t get hold of it unless you have the money is just awful.”
Stephen is just one of many acutely ill patients in Scotland fighting to get life-extending drugs on the NHS despite reforms to the system for approving new medicines, according to damning new claims by campaigners.
One breast cancer charity warned there was “frustration and anger” over not being able to access new life-extending drugs, with some patients even having to seek private care abroad or paying out of their own pocket rather than accept nothing can be done.
Hundreds of cystic fibrosis patients north of the Border have also been unable to obtain a new treatment which can increase lung function and reduce hospital admissions after it was rejected for use by the NHS.
Charities have also called for further transparency over how a £90 million Scottish Government fund is used to pay for end-of-life treatments.
A series of submissions made to an independent review of the way drugs are assessed for use by the health service have also raised concerns over patients with rare and terminal conditions being denied the latest treatments on the NHS.
The Scottish Medicines Consortium (SMC) is responsible for assessing which drugs should be available on the NHS in Scotland, with a group of experts which weigh up factors such as how well each new medicine works and how cost-effective it is.
Former NHS Fife medical director Dr Brian Montgomery is currently leading a review of reforms made to the SMC process two years ago, which were aimed at improving patient access to medicines for rare and end-of-life conditions.
The report, which is due to be sent to ministers soon, is also looking more generally at how the system for getting patients access to new drugs is working.
However, submissions sent in by charities, which have been obtained by the Sunday Herald, have raised concerns that more needs to be done.
Lawrence Cowan, policy and campaigns manager at Breast Cancer Now, said: “At the moment in the NHS there is a drive to be ‘person-centred’ in the way patients are cared for. But we also need a medicines approval system which is person-centred.
“Patients want the service and the medicines approval system to fight tooth and nail (for them), whereas at the moment they are having to fight personally to get access to these drugs.”
Some ways in which the system could be improved, which Breast Cancer Now has suggested, include allowing patients and clinicians more opportunity to take part in question and answer sessions at meetings where it is decided which drugs will