ADVOCACY IN HEALTH & WELLNESS MATTERS

Standing up for Human Rights

Access to quality healthcare should be a basic human right, regardless of any pre-existing conditions or sensory loss. For people with vision loss, supplementary oversight is often needed to ensure they are receiving the same quality healthcare as everyone else, as they can’t see if proper procedures are followed.

Sometimes the health and well-being of a blind person can be negatively impacted by denial of access to treatment, insurance or assistive technology that enables them to function at a more equal level with their sighted counterparts. Such denials can provoke anger, stress and even depression.

In more serious cases where medical negligence or malpractice is a factor, we can provide expert consulting and advisement, as was the case with one of our students:

Schoolgirl left blind after surgeon fails to spot brain tumour

The Scotsman: Friday 13 May 2011

A SCHOOLGIRL who was told to use eyedrops by one of the country’s leading eye specialists when she had a tumour that has left her blind has received more than £1 million in damages.

Ewan Kemp, a consultant opthalmic surgeon, thought there was nothing physically wrong with the nine-year-old and referred her to a psychologist, a court heard. However, another expert later discovered a tumour was distorting her vision and she was admitted to hospital for emergency surgery.

The tumour was successfully removed, but the girl was left blind. Her mother sued Mr Kemp, service director of the Scottish Opthalmic Oncology Service at Glasgow’s Gartnavel Hospital, for 10m at the Court of Session in Edinburgh. The case was settled out of court for an undisclosed, seven-figure sum, but Lord Brailsford had to give a ruling on expenses.

The girl, who cannot be named for legal reasons, was noticed to have developed a squint. She was seen by an optician and by her GP, who referred her to a consultant. “In May 2005, she was seen by Mr Kemp. In July, he performed surgery to correct the squint. In October, her teacher advised her parents that she was struggling to see the blackboard at school,” said Lord Brailsford. “Mr Kemp reviewed her case, apparently without seeing the child, and diagnosed a condition which would be cured by a short course of eyedrops. “This course was followed but there was no improvement and her condition, in fact, deteriorated somewhat.”

Just under a year later, Mr Kemp referred the girl to a child psychologist. She was later seen by another consultant opthalmologist and found to be suffering from a tumour in the pituitary gland which was putting pressure on her optic nerve and distorting her vision.

“She was admitted to the Royal Hospital for Sick Children in Glasgow as an emergency and on 11 September she underwent surgery for removal of the tumour which was, fortunately, successful but has left her blind,” added Lord Brailsford. “That condition is, most unfortunately, irreversible and she will remain blind for the rest of her life.” The mother alleged negligence by Mr Kemp in failing to diagnose the tumour, and agreed to accept an offer to settle the case. The offer included expenses.

Her lawyers asked Lord Brailsford to certify as an expert witness – for whom a higher rate of expenses could be received – Daniel Kish, an American who is blind and who heads World Access for the Blind, a non-profit organisation. He had met the girl and her parents on a visit to Scotland, and wrote reports on her particular needs.

Lord Brailsford agreed to certification, stating: “The person who sustained the loss was a normal girl rendered blind by the causative act of negligence. That is obviously a tragic event and one which, no matter her abilities, will have profound effects on her future life. “I consider it entirely proper that her parents and advisers seek to do all they can to assist her.” Her mother’s lawyers also wanted the expenses to include the costs which had been incurred in setting up a trust to administer the damages for the girl, but Lord Brailsford refused. “The expenses which have been incurred … should have been anticipated and therefore, in my view, do not form a recoverable charge against Mr Kemp.”

Read the original story and view the timeline of the case.

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Call us toll-free (in the United States) at +1 866-396-7035 or email info@visioneers.org

2005 HEALTH GOALS IN 2018:

Have We Progressed?

In 2005, The Surgeon-General’s Call To Action to Improve the Health and Wellness of Persons with Disabilities, was published. Quoting from it: “Developed by the Surgeon General in collaboration with the Department’s Office on Disability, it describes the particular challenges to health and wellbeing faced by persons of all ages with disabilities. It places their health squarely among the public health issues at the forefront of research, service delivery, financing, training and education and health care policy today. It also builds upon the Nation’s efforts to promote wellness and disease prevention in all persons, including those with disabilities, as called for in the President’s HealthierUS Initiative.

Challenging the misconceptions about persons with disabilities—and elevating the importance of their health and wellness in the public consciousness—are steps that can begin to help improve the health status of persons with disabilities. At the same time, changing attitudes toward persons with disabilities can help the public recognize and address the environmental, social and economic barriers that undermine the ability of persons with disabilities to become and remain full participants in community life.”

“Health care providers and their staff may harbor many of the same misconceptions about persons with disabilities as are found in the general public. Too often, health care service programs and personnel have not adopted the biopsychosocial approach to disability. Reports from persons with disabilities suggest that health care providers often focus on their disabling condition rather than on other health issues that might be of concern to the individual (Panko Reis 2004).

As a result, individuals with disabilities often encounter professionals unprepared to identify and treat their primary and secondary conditions and any other health and wellness concerns. Frequently, health care providers do not recognize individuals with disabilities as either knowledgeable partners in discussing care options or as “experts” with respect to their own medical conditions.

In still other cases, persons with disabilities are excluded from discussions about their health issues altogether, by being treated in much the same way as children are excluded from the conversation between pediatrician and concerned parent (Iezzoni 2003; Welner and Haseltine 2004).

These issues seem to be exacerbated for individuals with sensory disabilities—hearing loss, deafness, blindness and low vision—that center around the key issues of respect, physical access, communication and inaccessible information formats (O’Day et al 2004; Iezzoni et al 2004). While assistive devices and technologies (including interpreters for signing) can improve communication between such individuals and their health care providers, their availability and use are limited and not always best adapted for all patients, such as older adults with late life onset of limited vision, blindness, or deafness whose experience with adaptive methodologies, such as signing, might be scant.

A survey by the Henry J. Kaiser Family Foundation (2003) disclosed that among nonelderly persons with disabilities, 25 percent reported that they had difficulty finding a doctor who “understands my disability.”

This finding is not entirely surprising because many physicians have had limited experience during medical training in treating patients with disabilities. As a result, many are unable to meet the full range of health care needs presented by a person with a particular disabling condition, much less to evaluate and treat that individual in a culturally appropriate and sensitive manner.”

If you’re blind or have low vision, let us know if you think anything has improved since the publication of the “Call to Action” or whether we still have a long way to go based on what you’ve just read. Email us at info@visioneers.org .

Lead Visioneer Daniel Kish touched on some related issues when he spoke at the 1st International Symposium on Optimal Healing Environments in Rotterdam, The Netherlands in November 2012.