The ‘cleavage sparing mastectomy’ that may have cost my mum her life.

 

Like everybody else, I was winding down on Friday and looking forward to a long Bank holiday weekend. I had prosecco in the fridge, plans to clean out the patio and maybe buy a new garden bench. But then the 5pm news came on. The lead story was that a surgeon called Mr. Paterson had been convicted of intentional harm.

And I was back in the hospice with my mum as she fought to take her last breath.

I have thought long and hard before writing this post. I cannot change what happened and I have no wish to be part of any media circus or witch hunt. But I do want people to learn lessons. And I want my mum’s death to matter.

My mum was first diagnosed with breast cancer early in 2006. We had a four-year-old son and a new-born baby, so she was staying over to babysit. Once the boys were in bed, she sat on our settee and told us about the lump she had found, and that the tests had shown it was cancer. I was shocked, she was scared and I promised to attend every single appointment with her.

The papers talk about how charismatic Mr. Paterson was. That was not my experience. When we met him – just the once – he seemed brusque and arrogant. He said my mum had a fast growing tumour in her breast and needed a mastectomy. I remember he spoke about the possibility of reconstructive surgery and my mum dismissing the very thought. She was 61. She had always been (in her own words) ‘flat chested’. She didn’t care about cosmetics, she just wanted the cancer gone.

Unfortunately for my mum, contrary to existing guidelines, Mr. Paterson carried out ‘cleavage sparing’ surgery. In effect, this meant that instead of a total mastectomy, some flesh was left behind in order to facilitate potential reconstructive breast surgery (which according to some reports, he potentially benefited from in his private practice). The pros and cons of this non-standard procedure were never explained or discussed. My mum was eager for the operation to commence and so consent forms were signed. She was, as Sir Ian Kennedy so astutely noted in his report, ‘consented’; she did not give consent.

My mum had the mastectomy and then went through the ordeal of chemotherapy and radiotherapy. I won’t go into the gory details. If you or a loved one have been there, then you will know what this means. If you haven’t, then I hope you never will. After that, it was an anxious vigil for us all as we waited for each scan, counting down the days for the five year ‘all clear’ milestone. My mum’s hair grew back, thicker and darker than before. She put on weight. She thrived. She was nearly there. In the spring of 2011, she had her five-year check up – with Mr. Paterson as it happens – and she was signed off. Five years, cancer free. My mum was so relieved. I remember that we went for a celebratory lunch and that she played Frisbee with her grandchildren in the garden.

But in the summer of that year, my mum was recalled by the hospital and told that the operation she’d had in 2006 had not been a full mastectomy and that she would need further surgery to remove potentially cancerous flesh. (It later turned out that my mum should have been recalled in 2009, but there had been an error and my mum was somehow missed off). Sometime after that operation, she visited the hospital for a check up where she complained of tiredness and pain. An alert doctor ran more tests and she was eventually diagnosed with bone cancer, secondary to breast cancer.

My mum then went through another round of chemotherapy, but as she said herself, this time her body was too weak to take it. It sapped her energy and confidence until she could no longer leave the house unless in a wheelchair equipped with oxygen tanks. Even writing this, all the memories I have blanked out – the sound of the oxygen tank in her bedroom, the tubes in her nose, the morphine by her bedside – it all comes flooding back.

I have read some but not all of the newspaper reports this weekend – even four years later, it is still too raw – but I am shocked at the sheer scale of the damage and hurt that Mr. Paterson has caused. He removed lumps and breasts when there was no clinical need. My heart goes out to those women and their families who went through unnecessary physical and mental trauma and I do not pretend to understand what they are going through.

I cannot speak for anyone else, but personally I do not feel any satisfaction or pleasure that Mr. Paterson is going to jail. As his colleague Dr. Budhoo said, I doubt if he accepts or understands what he has done wrong. For me, the big question is not what was wrong with Mr. Paterson, but what was wrong with the culture and practices at the Trust? Why did no one else stop him from practicing surgery that was so clearly outside of all guidelines? Why, when questions were finally raised (as early as 2003) was prompt action not taken to stop him from harming patients, and why, when he was under an active investigation and clearly conflicted, was he allowed to see my mum and sign her off? Some of these questions are answered in the excellent review carried out by Sir Ian Kennedy who wrote:

This is a tragic story. It is not a story about the whole of the NHS. It is about something that happened in one corner of one hospital Trust in one part of the NHS. But, it has lessons for the whole of the NHS. It is a story of women faced with a life threatening disease who have been harmed. It is a story of clinicians at their wits’ ends trying for years to get the Trust to address what was going on. It is a story of clinicians going along with what they knew to be poor performance. It is a story of weak and indecisive leadership from senior managers. It is a story of secrecy and containment. It is a story of a Board which did not carry out its responsibilities. It is a story of a surgeon who chose on occasions to operate on  women in a way unrecognised by his peers and thereby exposed them to harm.

It was also my mum’s story. My mum died in August 2013. She was just 68 years old and left behind a heart broken widow, three children and three young grandchildren. There was a hurried out of court settlement with the NHS Trust before she died based upon a clinical assessment of her case. Whilst it was accepted that having a ‘cleavage sparing mastectomy’ had increased her risk of cancer returning, it could not be proven beyond doubt that it had caused her secondary bone cancer. Her lawyers said that she could challenge this but my mum chose to accept the judgement. Partly because she didn’t have long left and wanted her affairs to be in order before she passed away, but mostly because she took some comfort from the clinical report into her case. My mum did not want to die and it would have caused her unspeakable agony to know that her death was both unnecessary and avoidable.

Like everyone else who has ever been affected by a clinical or managerial error, my mum’s main aim in persuing a court action was not to receive an apology or money, but to ensure that this could never happen again to anyone else. The best legacy for my mum and the other patients and relatives affected by Mr. Paterson would be for everyone in the NHS to read Sir Ian Kennedy’s review. http://www.heartofengland.nhs.uk/wp-content/uploads/Kennedy-Report-Final.pdf

The lessons it sets out are very simple: always put the patient and their needs first. If you have concerns about a colleague, raise them and do not stop until they are addressed.

In short, always do the right thing.

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9 thoughts on “The ‘cleavage sparing mastectomy’ that may have cost my mum her life.

  1. Thank you for telling this sad event in the life of your family and in particular your beloved mother.I  am so sorry. Lessons must be learnt. Thank you for your contribution to this.With loveHelena   

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  2. I wish I had words that meant something, that could change something. This is unspeakably awful. I am so so sorry that on top of the daily sorrow of missing your mum you and she and the rest of your family have had to contend with this. There is no justice here. I am so sorry.

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