The husband of a Dundee cancer campaigner has been given an apology from health bosses for “unacceptable” care in the final months of her life.
Ruth Johnson bravely laid bare the realities of her terminal diagnosis in The Courier to help raise awareness of the disease before she passed away in November.
Mrs Johnson was a former board member of Business Beats Cancer Dundee.
We reported previously that NHS Tayside kept her husband, Les, waiting more than four months for a response to a litany of concerns about her care.
The health board has now apologised for a number of issues including:
- Mr and Mrs Johnson being told by a surgeon who worked at NHS Tayside that it had “basically undertaken a trial” of providing lower chemotherapy doses.
- The distress caused to both from “insensitive” communication during treatment.
- Personal comments made to Mrs Johnson by a staff member prior to her undergoing chemotherapy, which were described by NHS Tayside as “unacceptable”.
- “Additional concern” caused by a delay in referring Mrs Johnson’s to a new oncologist when her previous doctor left because the new specialist was ill.
- Not explaining that equipment was being removed to make the area feel less clinical as Mrs Johnson was prepared for end of life.
- “Additional distress” caused by delays in responding to nurse call buzzers.
It acknowledged many aspects of Mrs Johnson’s care were not “appropriately communicated”.
Mr Johnson was left “unclear on timing of blood tests, use of oxygen masks, removal of clinical equipment and the reasons for this”.
Former staff members not involved
Bosses said some members of staff named in the complaint are no longer working for NHS Tayside so “were not in a position to be directly involved in the response”.
It means their investigation was reliant solely on medical records for aspects of care performed by these former staff members.
Mr Johnson has called for an independent investigation to be carried out.
He wants a written apology for what he believes were delays in treating the recurrence of his wife’s cancer, and for the way she was told it was incurable without him present.
Reliving it over and over
Mr Johnson said: “To wait four months for this as a response is just totally unacceptable. I’ve been having to relive this over and over again.
“All they had to do was hold their hands up and admit they had done wrong by Ruth, and to put procedures in place to save future patients and families from having to go through this.
“You can’t move forward until you’re willing to own up and admit your mistakes. So I’ve got to keep on fighting for what’s right.
“If nothing else comes out of this, Ruth’s legacy should be that no other cancer patients in Dundee have to suffer unduly as Ruth did.”
Concern over future investigations
The admission that staff no longer working for the health board were not consulted as part of the complaint raises concerns for any future investigations brought forward by breast cancer patients in Tayside.
Mrs Johnson was one of around 200 women given “lower than standard” doses of chemotherapy treatment at the health board.
Every single breast cancer consultant employed at NHS Tayside has since left after accusing bosses of throwing them “under the bus” over the scandal.
North East Labour MSP Michael Marra said he is “glad” Mr Johnson has now received apologies from NHS Tayside.
He said: “The delay in these being given has been unacceptable and I hope that the management of the board reflect on that and act more timeously to prevent further distress for bereaved families.
“Ruth’s loss has been a real tragedy for Les Johnson, their family and friends and also for the local community good.
“I know that Les wants to ensure the best possible care for cancer patients in Tayside and I will continue to support him in fighting to restore our services to the levels we should all be able to expect.”
How has NHS Tayside responded?
In the response to Mr Johnson’s complaint, NHS Tayside outlined a number of areas where improvements have been made, including a new section of nursing documentation focused on what matters to patients and families.
It said it hopes this documentation “will promote better communication and ensure patient and representative wishes are captured”.
It is currently being tested and a full roll out is planned for later this year.
An NHS Tayside spokeswoman said: “Senior doctors and nurses, and members of the oncology team, have met with Mr Johnson to hear concerns and comments directly from him, and to try to answer his questions about his wife’s care as best they can.
“Given the complexity of the case and the number of services involved, there is a lot of information for Mr Johnson to consider and we recognise he may have additional questions.
“Senior members of the nursing and medical team have committed to respond to Mr Johnson’s concerns and are grateful for his feedback.”