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Public Services Ombudsman says dementia sufferer’s Human Rights were ‘engaged’ by health board failings

THE Public Services Ombudsman for Wales says a dementia sufferer who suffered “years of indignity” because of eight years of health board failings had her human rights “engaged”.

Nick Bennett, chief officer of the watchdog, said that, although he doesn’t have the power to make “definitive findings” on human rights breaches, he felt the woman’s Article 8 rights to respect for private and family life had been diminished by her treatment by Betsi Cadwaladr University Health Board.

He found “clinical decision-making and rationale shown by colorectal surgeons was not in keeping with accepted clinical practice” regarding Mrs B’s treatment for severe rectal prolapse from 2011 until her death on June 6, 2018.

In that time, she was also diagnosed with a stroke, dementia and chronic kidney disease.

The report found she had been offered “high risk, unconventional treatments” to solve the problem rather than less invasive ones.

Betsi Cadwaladr agreed to four recommendations to be carried out within three months:

(a) The Health Board’s Chief Executive should apologise to Mr A, on behalf of the family, for the clinical and complaint handling failings identified

(b) The Health Board should invite Mr A and his sister to engage with an equivalent to the Putting Things Right Redress process – which would include any financial compensation

(c) The Health Board should review how its colorectal team carries out rectal prolapse procedures

(d) The Health Board should share the points of clinical learning from this case at an appropriate colorectal clinical forum

Mr Bennett said he expected the health board to carry out the recommendations within the time scale and his office would be “following up with all aspects of compliance”.

Speaking to the Local Democracy Reporting Service (LDRS), Mr Bennett said: “The full range of treatments weren’t provided and they were going for the most extreme treatment option.

“I think the part with the public interest in this is the fact the health board weren’t following good health care with an ageing patient.

“As a result of that her last eight years of life were pretty miserable.”

He added: “It is clear there was a significant injustice in this case.

“As ombudsman, given the failings that happened here, it is right I take a stand on driving forward improvements in care and service delivery, given the effects such failings have on individuals like Mrs B, her family and their human rights.”

The complaint was brought to the ombudsman by the woman’s son, referred to as Mr A, who complained about:

The treatment of his mother (Mrs B) by the colorectal department between 2011 and 2018
The adequacy of the inpatient medical care provided by a care of the elderly consultant during Mrs B’s admission in May 2018
Late diagnosis of her terminal ovarian cancer
The robustness of the Health Board’s complaint response
Mrs B had been seen by a colorectal surgeon in 2011 having suffered a severe rectal prolapse (when part of the anus protrudes throught the sphincter).

She had a 10-year history of incontinence and underwent repair surgery for prolapse in 2001 and 2007.

The first surgeon she saw didn’t consider abdominal rectopexy (a surgical procedure to repair a rectal prolapse where the rectum is put back in its normal position) would solve Mrs B’s bowel incontinence problems.

The surgeon later told the ombudsman “perhaps he could and should have dealt with Mrs B’s rectal prolapse in 2011 or 2014 with an abdominal rectopexy”.

He decided at the time that a colostomy, where the colon is brought up to the skin so bowel contents can be collected in a stoma bag, might be her only option.

After she declined the treatment, the surgeon discharged her.

She was referred again in 2014 by her GP with a worsening prolapse, frequent bouts of incontinence and rectal bleeding.

In the referral letter, her GP said: “It is really starting to impact on her life now and she feels embarrassed going out in public with frequent soiling and bleeding.”

The ombudsman’s report said: “A further GP referral letter sent two months later said Mrs B had now been diagnosed with a stroke, dementia and chronic kidney disease.”

The first surgeon Mrs B had seen in 2011 now offered two solutions, the first was “completely removing her rectum and possibly her anus (an abdominal perineal re-section) followed by a permanent colostomy”.

The second option, a loop colostomy first offered in 2011, would “not completely resolve Mrs B’s rectal prolapse”.

In April 2015 she was referred again by her GP, as she now had to use pads to cope with the bleeding she suffered and was against having the colostomy.

In January 2016 she was seen by a second colorectal surgeon who suggested she should have a loop colostomy. He warned it would not cure her prolapse completely.

The report said: “He added if Mrs B wanted to have her rectum surgically removed, he would refer her back to the first colorectal surgeon.”

Further investigations found her urinary incontinence was most likely caused by her prolapse.

She had more reviews in September and November 2016 and both surgeons believed a loop colostomy would “hopefully” stop Mrs B’s prolapse.

Her colostomy operation was cancelled in 2017 because she was diagnosed with anaemia.

On March 19, 2018, the day of her rescheduled operation, the surgeon advised Mrs B her “colostomy would not help her prolapse and she decided not to go ahead with the operation”, said the report.

On April 8, her family asked the hospital for a plan of action to manage the prolapse because it was “affecting her quality of life”.

After a fall in May Mrs B was admitted to the emergency department but plans for an abdominal and chest x-ray were shelved as she was due a surgical review regarding her rectal prolapse.

A different solorectal surgeon proposed putting Mrs B forward for less invasive (Delorme’s) rectal prolapse repair surgery.

Before it could be considered her condition deteriorated after she developed an infection and her kidneys stopped working properly.

Further investigations found Mrs B had an abnormal build-up of fluid in the abdomen which contained cancer cells and metastatic ovarian cancer.

After further tests confirmed the diagnosis she was given palliative care only and Mrs B died on June 6, 2018.

Mr A and his sister complained to the health board and it acknowledged “long waits between colorectal outpatient appointments”.

It said some of the delays and “confusion” were caused by consultant surgeons being on sick leave and Mrs B’s care being transferred to other consultants but said she had “misunderstood” what she had been told and thought the colostomy would cure her prolapse.

Mr A said there was no misunderstanding on the part of the family and their mother about the nature of the treatment being offered.

The report added Mr A felt the delays in treatment had left his mother “effectively housebound for the last eight years of her life”.

The ombudsman’s report added: “She was in too much pain and too worried about being caught short due to her double incontinence to risk going to social activities such as the cinema or a pensioner’s social group recommended by the memory clinic.

“She only went to GP and hospital appointments and occasional trips to the local supermarket because she knew she could use a toilet if necessary.”

The ombudsman’s adviser said the clinical decision-making was “unusual and would not be regarded as normal standard colorectal practice for treating a rectal prolapse”.

He said Mrs B should have been offered “a repeat of the surgical rectal prolapse repair (the Delorme’s procedure) she had in 2001 and 2007”.

His report concluded: “My Adviser was clear it was not standard clinical practice to offer a colostomy as a preference for prolapse surgery.

“More straightforward surgical rectal prolapse repair options, including less invasive procedures, were discounted in favour of high risk, unconventional and in one case (which would have involved the complete removal of Mrs B’s rectum and possibly her anus), extreme treatment options, which would have provided Mrs B with little or no clinical benefit.

“My adviser said any treatment should be based on a patient’s needs and
not whether a colostomy might make it easier for a carer to manage a
patient’s bowel incontinence.”

Jo Whitehead, chief executive of Betsi Cadwaladr University Health Board, said: “We offer our sincere apologies for the failings found in this report, including the delay in offering surgery, the distress this has caused and the mishandling of the complaint investigation.

“We have considered the Ombudsman’s report very carefully and we accept the findings, which has identified areas for improvement to ensure patients receive better and more timely care.

“The health board will now implement the Ombudsman’s recommendations and we will write to the family to apologise for the identified failings and to discuss the matter further.”

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