Show me my medical records, demands Cumbrian breast cancer victim
Last updated at 15:00, Friday, 15 October 2010
A woman who had a breast removed after being wrongly given the all-clear for cancer claims her medical records are now being withheld.
The mum-of-two, who is now receiving treatment outside north Cumbria, said that requests by her GP, consultant and Macmillan nurse have all been ignored, despite national NHS policy giving patients a legal right to their records.
Her case raises new concerns about the number of instances of breast cancer missed in north Cumbria in recent years – and whether the problem could extend beyond the 1,500 patients whose results have been reviewed.
The routine screening service at the Cumberland Infirmary and West Cumberland Hospital, which tests all women between 50 and 70 every three years, was suspended in July.
Nine women previously given the all-clear were initially confirmed as having cancer, but three months on no further figures have been released. Now new fears are emerging that even more women could potentially be affected, while there are also concerns that patients are being kept in the dark.
Several women have now sought legal advice in a bid to have their questions answered – including one who claims she has been unable to obtain her own medical records, which include her previous mammogram results.
The 54-year-old, who has asked to remain anonymous, has now asked Carlisle-based legal firm Burnetts to take up the fight on her behalf so she can find out why her cancer was missed – and whether the outcome could have been different.
“Initially when I asked, all I wanted was for my records to be together,” she said. “Now I feel angry that they are not following up my request. You get to a stage where you don’t want to ask any more. It’s not in my nature to keep pushing.”
Speaking exclusively to The Cumberland News, she told of losing her breast after discovering a lump in March this year – only to find out later that her mammogram almost 12 months earlier had showed signs of cancer.
“You hear the word cancer and your stomach sinks to the pit. Right from the word go, after seeing the size of the lump, I said I wanted the mastectomy.
“It was so big, I just wanted to know it was gone,” said the woman, who lives in west Cumbria.
But her solicitor, Lynne Hall, who specialises in medical law, said: “While she went down the route of mastectomy, who is to say that if this had been diagnosed in 2009 it may not have required such a radical procedure, such as radiotherapy.
“We are looking at whether her treatment would have been different.”
This woman does not know if she is among the nine already flagged up by the review, and has had no direct communication from hospital bosses.
When contacted by The Cumberland News this week, the North Cumbria University Hospitals Trust, which runs the screening services, said it was unable to comment because it relates to a patient’s individual information, give any further update on the review other than it is continuing or answer specific questions, including why records would be withheld.
Since discovering the lump, the woman has been receiving treatment in the south of the county but before that she underwent routine screening at the West Cumberland Hospital in 2006 and 2009.
She has since been notified, via her GP, that the last mammogram, in May last year, did show signs of cancer.
In the past the trust has said that only women recalled following routine mammograms between 2007 and July this year were affected.
However this woman said she was never recalled. Her cancer was only discovered because she found a lump herself, and she was already receiving treatment by the time she heard about the review.
Nobody has ever contacted her to say whether her results are among those now being looked at.
Victoria Watson, a partner in Burnetts’ medical law team, said she may not be the only one.
“I would stress that we are seeing clients from outside the dates that the trust is currently reviewing,” she said.
“I would not be surprised if the review period was extended so I would advise women not to ignore any of the usual breast cancer warning signs because they have been given an all-clear on a mammogram.”
She added that one of the main issues worrying her clients is the lack of communication they have experienced.
“Over and over again, I hear clients say they don’t want another family to go through the trauma they are enduring and they want the trust to explain what on earth has been going on with their treatment and to ensure that this doesn’t happen to anyone else.
“Unfortunately past experience has taught us that we usually have to find out the answers for them,” she added.
“I appreciate that the trust cannot comment upon individual cases but it is a cause for concern that the clients we are speaking to seem to have been provided with very little by way of even general information or guidance as to how the investigation is being run, what it will entail, how thorough it will be and a timescale for completion.”
Carlisle MP John Stevenson has also raised concerns about the way the review was handled at the start and the length of time it has taken.
He is raising these issues with bosses in a bid to restart screening and address the backlog – estimated to be about 3,000 women.
He said: “I am concerned that the service failed and at the outset it was poorly handled. The other big worry is that no screening is going on now.
“I want to see that report out as soon as possible and get in the public domain so we can have confidence for women going forward.”
Earlier this week it emerged that the trust has spent £40,437 rearranging and providing extra screening since the end of June. However it refused to say – despite a request under the Freedom of Information Act – whether any staff had been retrained, disciplined or left since the review started, arguing it had weighed up the level of public interest and distress it would cause to staff.
- Burnetts have produced a free advice sheet for anyone who thinks they may be a victim of delayed cancer diagnosis. Visit www.burnetts.co.uk.
First published at 14:16, Friday, 15 October 2010
Published by http://www.cumberlandnews.co.uk
Have your say
my elderly mum has been passed around all the departments at cumb infirmary since presenting with inflammatory breast cancer in july.lack of information is our main complaint.she feels they have just left her to die.no treatment after eight appointments left her depressed and frightened.we have never been told why they havent tried anything to at least given her hope.the tumour has grown and she is now fighting fluid on the lung.the whole dept needs a thorough overhaul i have no trust in the outpatients or the wards the place is a shambles.
I have my mammogrames done here in my local town.Its about the size of Wigton. My results are looked at by the whole team and results given to me by a doctor All this at the time of my mammograme. My results are then sent to Nimes for another team to recheck the results.I have every faith in this system.
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