No one goes to NHS appointment expecting to have to pay £3,000
– Patient Susie Livingstone
A former nurse diagnosed with breast cancer was told she would have to pay £3,000 if she wanted to have a test to determine if she needed chemotherapy.
Susie Livingstone, 58, a senior staff nurse at the renal unit in Glasgow’s Stobhill Hospital for more than 30 years, was diagnosed earlier this year and is currently recovering after a mastectomy.
She has been told that her cancer has spread to her lymph nodes which, in some cases, can be tackled with chemotherapy.
At a follow-up consultation with her oncologist at Beatson Cancer Centre in Glasgow she was told a test was available to determine whether chemotherapy was likely to work. But the NHS only offers the test to patients who meet certain clinical criteria. If they don’t, they can still have the test if they pay for it themselves.
Susie was faced with three options: have chemo whether required or not; take part in a randomised Optima clinical trial, again with the potential of having unnecessary chemo; or pay £3,000 for a Prosigna test.
Susie is particularly keen to know if chemo is the right course of treatment for her as she also has arthritis and the treatment could interfere with the medication she takes to control the pain in her joints.
Susie said: “I have decided to pay for the test because I want a definitive answer as to whether or not I need chemotherapy.
“I don’t want to have to go through that type of treatment unless I have to. But I am shocked at having to pay for a test that should be available on the NHS. If I had opted to take part in the clinical trial I may very well have had chemotherapy when I didn’t need it. No one expects to turn up for an NHS appointment and leave knowing they have to find £3,000 to pay for a test.”
Susie was told that had her breast cancer not spread into her lymph nodes then she would have been eligible for the test free on the NHS but because it had spread she was disqualified.
“Many cancer patients are at their lowest ebb after diagnosis and find it all quite devastating. And to then be told we need to find £3,000 is kicking us when we are down”, said Susie, who retired last year.
“Many cancer patients struggle financially after diagnosis because they may be unable to work for prolonged periods, meaning they are being asked to pay up thousands of pounds when they can least afford it.”
Susie’s friends and family have set up a Gofundme page to help raise the money necessary to pay for the test and she is “overwhelmed by the generosity” people have shown her, raising a staggering £3,560 - more than enough to cover the cost
NHS Greater Glasgow & Clyde said: “The test referenced is currently offered through the NHS to qualifying patients with a specific type of breast cancer who meet the criteria.
“Where there are instances where we think patients may benefit from the test, but do not meet the established criteria, they may be able to take part in a trial which would provide them with access to the test. If the patient does not take part in the trial but still wanted the test, they would be able to self-fund.”