Video: Support for Caregivers: an integral part of the Circle of Strength

New-Zealand Support for Caregivers: an integral part of the Circle of Strength

The wellbeing of both the persons living with ME/CFS and their caregivers and family/support networks is something WellMe strongly advocates through our Support Groups and regular Coffee Groups. WellMe’s ethos that support is all – support is vital is an integral part of WellMe’s culture, as is our buddy system. Support for our caregivers is equally vital. Together we are strong and an integral part of each other’s circle of strength. As our caregivers protect and nurture us, they too need to be protected and nurtured so as not to suffer burn out and exhaustion.

Caregivers and supporters need their own support networks and self-management techniques. Phillida Bunkle’s address to WellMe’s AGM last December on the personal and family impacts of ME: deficits in care, the importance of family care for the sick, and its impacts on other members will resonate with many. When discussing the subject of her address, Phillida said ‘I would like to touch on the practical difficulties of nursing the severely affected because they are barely acknowledged.’

Throughout her career, Phillida has been involved with many aspects of patient protection including patient advocacy, health consumer representation and policy development particularly concerning women’s health, and the care of people with ME/CFS and cancer. On four occasions she has been a delegate to WHO world summits on World Health.

Most noted for co-writing ‘An Unfortunate Experiment at National Womens’ with Sandra Coney leading to a Commission of Inquiry headed by Dame Silvia Cartwright that helped strengthen patients’ rights and saw the establishment of a national cervical screening programme, Phillida has published widely and won a number of awards recognising her contribution to health consumer protection. These include the New Zealand Health Industry Distinguished Public Service Award, and the New Zealand Governor General’s Special Award of Excellence in Journalism and being made a life member of the National Distribution Workers Union (NZ).

Phillida is qualified in many branches of massage and bodywork and is a former patron of the New Zealand Massage Institute. She also holds practice certificates in reflexology, foot care, cancer care and health coaching and currently divides her time between caring for family members with ME in New Zealand and running a small private health coaching practice in nutrition and bodywork in Central London.

Phillida has lived with ME and has several family members with it and spoke at WellMe’s AGM on the importance of support for caregivers (which is also the subject of ANZMES awareness day). This clip http://bit.ly/2FPfbWs will be used by them and is being posted on their social media platforms http://bit.ly/2FSOfoH and also the websites of the main NZ support group networks.

WellMe Wellington New Zealand
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I found this good. I think it will be validating for carers and educational for medical and care professionals.

Phillida is quite well known in New Zealand and her warm personality comes through in this talk.

Apart from fairly short periods (although agonisingly long enough), my children have not been severely affected (as in being bed-bound) by ME. Even so, I could relate to some of the points Phillida made.

Some of the things she talks about are:
  • Patients may not want to acknowledge that they are sick, and this can make the carer's job harder
  • If patients recover (even partly) they may want to put a lot of distance between them and the disease - this can be a problem for advocacy organisations
  • Carer's hypervigilance in looking for signs of relapse
  • The lack of understanding from all quarters makes caring so much harder
  • Some practical help - an electric bed, a manual handling course
  • The benefit of getting involved in conferences for that sense of camaraderie
I think she may have a slightly unfounded optimism about recovery rates, but that's a small thing. It was interesting to hear a little about her experience exposing another significant medical scandal.

The second half of the talk was more about PACE, MUS and health policy, which I think will be less interesting to those who are already very familiar with the issues around those.
 
Just a thought - pretty much every New Zealand journalist and media outlet will have heard of Phillida Bunkle and Sandra Coney because of 'The Unfortunate Experiment' scandal.

I expect that Phillida has some really good connections in the NZ media. Of course I don't know how she feels about further active campaigning about ME, but @dave30th, Phillida could possibly be a useful collaborator or contact in New Zealand to help get articles published in mainstream media.
 
I know I'm going on a bit - but I was really surprised to find out that Phillida Bunkle has this extensive involvement with ME.

Here's a bit of background on the Unfortunate Experiment
(https://www.womens-health.org.nz/consumer-rights/cartwright-inquiry/)

In 1987, Women’s Health Action founders Sandra Coney and Phillida Bunkle published an article called ‘An unfortunate experiment at National Women’s Hospital’ in the monthly Auckland magazine – Metro. The article outlined an unethical study at National Women’s Hospital, the country’s premier women’s hospital. The study, led by Dr Herbert Green, started in 1966, and involved following women with major cervical abnormalities without definitively treating them, and without their knowledge or consent. Twenty years on, many had developed cervical cancer and some had died.

The revelations led to public outrage and ultimately to a Government ordered Ministerial Committee of Inquiry.The Inquiry into the Allegations Concerning the Treatment of Cervical Cancer at National Women’s Hospital in 1987 and 1988, known as the Cartwright Inquiry after the presiding judge, Judge Dame Silvia Cartwright, is remembered as one of the most significant medical events of the twentieth century. [a bit hyperbolic maybe, but I know it was a very big deal in NZ :)]

While focused on the treatment of cervical cancer, the inquiry lead to scrutiny of a range of issues related to the practice of medicine in New Zealand including research practices, teaching methods, patients’ rights and medical dominance. It exposed a core dynamic of twentieth century medical practice – doctors, with their appeals to objective, rational and scientific knowledge, knew best and patients, particularly women, were irrational, hysterical and incapable of making decisions for themselves.

...

The Report of the Cervical Cancer Inquiry (the Cartwright Report) was released on the 5th August, 1988. In it, Judge Cartwright found that the allegations made in the Metro article were largely correct. Judge Cartwright identified not only a failure to adequately treat cervical cancer in some patients but also significant and sustained failures in doctors’ ethical practices in relation to respect, communication, information sharing and obtaining informed consent.

Judge Cartwright also identified systemic failures in the ethical approval and surveillance procedures for the conduct of research and new treatments at National Women’s noting that the ethics committee lacked independence and failed to protect patients and promote their welfare. Judge Cartwright recommended a series of reforms to enhance patient welfare and to ensure the protection of patient rights.

Principal among these were:
  • The development of a legislated Code of Patients Rights.
  • The establishment of an independent Health Commissioner, external to the medical professions, whose role would include
    • Negotiation and mediation of complaints and grievances by patients;
    • And heightening the professionals’ understanding of patients’ rights.

I'd totally understand if Phillida Bunkle has very limited energy to put to a campaign on ME, given that it sounds as if she has ME and has family with ME to care for. But a report titled 'Another Unfortunate Experiment', even with just a few quotes from Phillida, would get a lot of attention.
 
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