A CANCER patient who paid thousands for treatment the NHS refused to fund is calling for urgent change – after discovering a fellow sufferer is receiving the same drug free of charge in a different part of Scotland. 

Lesley Stephen has incurable breast cancer which stopped responding to standard chemotherapy, but NHS Lothian rejected her application for a new medicine which can help keep patients alive.

The mother of four wrote to Health Secretary Shona Robison about her situation and the chief executive of NHS Lothian Tim Davison, but was turned down.

Instead she used money left to her by her mother, who died of cancer herself months after Mrs Stephen was diagnosed, to help meet the £13,000 bill for the drug Kadcyla.

Now she has read that a fellow breast cancer patient, Lesley Graham, has been given Kadcyla on the NHS in the West of Scotland following an appeal.

Ms Stephen, from Edinburgh, said: “I am delighted for Lesley Graham but really annoyed about all these other women in Scotland who do not even know about the drug and who are dying. Consultants do not necessarily want to tell patients about Kadcyla because if they cannot prescribe it, it is tantalising – the treatment is out of reach.

“I have met women who have been on it for four years so when it does work it can be amazing. These women were back at work and raising their families with a good quality of life.”

The committee which decides which new medicines can be routinely prescribed on the NHS rejected Kadcyla in October 2014 to the disappointment of patients and charities. However, patients can apply to their health board for the treatment and have their particular circumstances considered using the Individual Patient Treatment Request (IPTR) system. 
Holyrood’s health committee heard evidence clinicians have little faith in this system three years ago, and the Scottish Government announced reforms in 2014. However, some feel there has been insufficient change. Ms Stephen said: “It is a minefield from a patient point of view. It is bad enough living with this disease emotionally and physically, but trying to navigate your way through this really complicated process which is inconsistent makes it so much harder.

“You have to have enough energy to write and make phone calls. A lot of women are just too ill.”

Ms Stephen, a keen runner, was diagnosed with breast cancer at the age of 48 in 2014. Scans revealed a tumour in her breast which had spread to her lungs, liver and bones. 

At first chemotherapy worked, but then the disease returned and spread to her brain. This time treatment was less successful and Ms Stephen was told her next best option was Kadcyla.

She applied for the drug through the IPTR system but NHS Lothian refused. Even if she paid for the medicine herself for three months, and it made a difference, the health board would not guarantee funding further treatment. Mrs Stephen felt she had no choice but to fund the drug herself and says the cancer virtually stabilised while she was on Kadcyla last year.

The patient who obtained Kadcyla on the NHS, Mrs Graham, 39, also has breast cancer which has spread and also wrote to Ms Robison about her situation. However, she lives in East Renfrewshire. Her initial application for the treatment was turned down and her friends began fundraising to pay for the drug, but her health board agreed to prescribe Kadcyla when she appealed.

Mary Allison, director for Scotland at charity Breast Cancer Now, said: “When it comes to IPTR there appears to be no guarantees of consistency in decision making across Scotland. As it stands, the system is open to postcode lotteries.  

“No-one should be forced to use their savings to pay for drugs their doctor thinks they need.

“That’s why we’re calling for fundamental reform of the system from how the SMC operates right through to IPTR.  

“That means better negotiation with drug companies to get the best deal for the NHS in the first place as well as trying a national approach to decision making on drugs not routinely available.” Dr David Farquharson, medical