Press Release Re: Helena Munroe PhD, MsED, OT

From: Carol Bowlby Sifton BscOT (Reg NS), BA, ODH

As a close friend and professional colleague of Heli Munroe, as well as her alternate Power of Attorney, I find the disregard for her carefully prepared wishes to be cared for by her husband appalling.
As a clinical professional with over 20 years of internationally recognized expertise in dementia care, I find it horrifying that public officials in Nova Scotia have refused to support the right of Heli, and hence all Canadians, to make plans for their future care should they become incapacitated. It is in effect, open season on the frail and the vulnerable in Nova Scotia and in Canada.
I learned on May 15, 2007, that Heli is in a private hospital for persons with early onset dementia and challenging behavior, Billingham Grange, North Yorkshire, UK. On Friday, May 25, 2007 we learned from Mr. Olaf Richardson, Social Worker for North Yorkshire County Council, that " we (i.e. the North Yorkshire Health Authority) will do anything to prevent her being removed from the care she is receiving at Billingham Grange, because we believe she is receiving the best care and that means nursing and medical care which is paramount." (Notes of a conversation between Mr. Richardson and Mr.Don Munroe, Heli's brother-in-law")
As an experienced professional I find it ludicrous for Mr. Richardsonto say that Heli is receiving the best possible care. This dramatic claim may be even possibly true from a strictly physical perspective. However, her care at present is in fact the polar opposite of evidence-based quality best practices care for persons with dementia. Heli is currently warehoused in another country in a vacuum, completely separated from her life partner of more that 40 years, both without any of her precious memories and mementos of a lifetime and her husband who can help her to enliven her memories. And without her dog Spike who is so important to her. It is widely recognized in clinical practice and research that it is essential to surround persons with dementia with their story, their past, people who know them in order to enable the best quality of life., in order to care for the whole person. How is it even remotely possible to consider this is the best possible care for Heli, totally separated from almost everyone and everything she has known over her lifetime, suggesting that 4 weeks or so of clearly "technically defined" medical care can in any way substitute for more than 40 years of a committed caring relationship?
She was moved from another psychiatric facility to Billingham Grange approximately mid-April 2007. I fail to understand why she cannot now be moved to be re-united with her Canadian husband.
Violent alarm bells were sent off when I read the following statement by Mr.Richardson, "We do not allow any visitors to her facility to visit without supervision because there are instances when family members disrupt the programme of care for patients, perhaps without intending to." In all of my years of clinical practice, including in mental health facilities, I have never heard of not allowing private visits between spouses. This is shocking. What does this facility have to hide? The only place I know of that doesn't allow private visits is a prison. It is sounding more and more like Heli is being held captive by people pretending to be looking out for her well-being.
Furthermore, Billingham Grange is caring for Heli, a very frail person with multiple medical problems and many drug sensitivities, without benefit of her medical records from Canada (from 2000 - 2005). In hope of benefitting Heli during her enforced stay overseas, her husband provided contact information for her Canadian doctors to Marek Pospieszalski in November 2005. Again, extensive medical records were provided to both Marek and Michael Pospieszalski in January 2007. Billingham Grange had no knowledge of this medical information until a significant portion of it was sent on May 10, 2007, attached as evidence to the Power of Attorney.
Mr. Richardson describes Heli's care needs as follows: "Let me define challenging. "Challenging" means a person who has no cognitive ability and needs 24 hour intensive care. Helena has no capacity to communicate any of her needs. From that, she needs help with feeding, toiletry, dressing, and everything else concerned with her care."
This statement is profoundly disturbing and also strongly suggests that Heli is receiving far less than optimal care. I have worked with hundreds of persons with advanced dementia. I have never had occasion, nor could I imagine one unless the person is dead, where one could say that the person has no cognitive ability nor any ability to communicate his or her needs. Understanding how the person communicates his or her needs is based on knowing the person's history, their needs and habits of a lifetime and on a high level clinical expertise in non-verbal communication.
This high level of skill is very apparently and tragically not available to Heli at Billingham Grange.
Best practices in dementia care also recognize that "challenging behaviours" are an expression of unmet needs, the person's way of communicating their needs when all else fails.
The staff from the Canadian High Commission who visited Heli at Billingham Grange reported that she paced constantly and often cried to herself. Clearly Heli is communicating that she has many unmet needs. How very tragic, how heartbreaking, that the very high quality, person-centered care that Heli worked all of her life to assure for other people is not being made available to her when she is in most need. Heli presented many times on this topic, including a paper titled "Scaling the Pyramid: Applying Maslow's Heirarchy of Needs with Persons with Dementia" to the 1988 Atlantic Conference of Occupational Therapists. This work was later incorporated into her PhD thesis.
Heli required, and received, the level of care and assistance described by Mr. Richardson when she was taken from her home, but she wasn't distressed (e.g. constant pacing and frequently crying to herself) as she is now. In fact, she was very content, as long as Sandy was within her sight. Based on my own clinical expertise, I must ask, how much of this distress has to do with Sandy's absence, and indeed with possible reactions to medications, to which she was very sensitive.
This situation from beginning to end is a travesty, an abrogation of Heli's human rights. It is obvious that the UK authorities are not going to act to re-dress this situation and return Heli to the excellent care she was receiving from her husband.
Clearly, it is incumbent on Canadian authorities to act immediately to uphold the rights and needs of this vulnerable person, and assure all Canadians that our right to determine future care plans is respected. It has been 18 months since Heli, who was completely unable to understand the implications, was taken from her happy and loving home. Any further delay on the part of Canadian authorities to act on Heli's behalf will worsen her personal tragedy and our national disgrace.
Carol Bowlby Sifton
Clinical Dementia Care Specialist
Editor, Alzheimer's Care Quarterly
Please get in touch if you have any questions. 902-634-3259 or csifton@ns.sympatico.ca