‘I sat there in silence, tears dripping down my chin’
Systems are not joined up, it is too easy to fall through gaps.
Maggie Matthews from Leek is a patient champion involved in the selection process of the lead organisation for cancer. Maggie works alongside GPs and commissioners evaluating bids from a patients’ perspective.
It was Maggie’s persistence and belief that ‘something wasn’t right’ that led to her breast cancer diagnosis.
Maggie had been examined thoroughly but her doctor found nothing. When she turned 70 the practice nurse advised her to go for a mammogram.
She says ‘it was chance that the mobile unit was in my hometown of Leek at that time and I went along for a test.’
About ten days later she was asked to go back to the hospital and see the consultant. She had biopsies taken and, 10 days later when she returned for the results, the consultant broke the news to her that she had cancer.
‘I sat there in silence, tears dripping down my chin,’ Maggie recalls.
Within a few weeks she went in for an operation, but a junior doctor shocked her when he told her she was having both her left and right breasts operated on.
‘I said it was only the left breast and my husband was understandably angry, but the doctor insisted I was down for both.
When the Registrar came onto the ward before my operation we had a discussion ensuring that it was understood that it was only my left breast which was to be operated on.’
When Maggie returned home after surgery she did not receive a visit from the district nurse for seven days and on the advice of the breast care unit had to call the out-of-hours service.
She says ‘it is this lack of coordination and continuity that causes problems and anxiety for patients.’
She was kept waiting for appointments – once for three-and-a-half hours – but says it was when her consultant went on maternity leave that she faced the most difficult period.
When Maggie was referred for further treatment the person discussing the treatment hadn’t even seen her medical notes.
‘When my consultant came back from maternity leave I saw her and I cried. I was so relieved to see her.’
The consultant asked what was wrong and I explained what had happened.
It is Maggie’s belief that there is excellent care, but she says her situation is proof that the problem is with systems.
‘Systems are not joined up and it is too easy to fall through gaps. My husband says he wonders what would happen to someone who wasn’t as confident as I am and didn’t have the support that I have.’
It is these experiences that led to Maggie working as a patient champion for the Transforming Cancer and End of Life Care programme.