Type ‘carers rights’ into Google and 23,300,000 sites are noted; type in ‘rights for caregivers USA’ and 19,300,000 are mentioned; ‘ rights for caregivers Canada’ and 11,300,000 are mentioned… across the world millions of people are involved professionally in caring for others.
And for each vulnerable or troubled person needing extra help and support informal carers, often family members, are also needed. The conditions and illnesses associated with need for extra life support are widely varied, may affect young or old in the short or long term. Not counting physical conditions, think of Alzheimers disease, think of mental health conditions and illnesses which may strike any family, anywhere. Think of autism …compulsive/addictive illnesses and conditions such as alcoholism, drugs, gambling, eating disorders…think of special educational needs… and there are also many many people who provide much extra care and support to allow a loved one to continue living at home – yet do not know they may be recognised as ‘carers’ or ‘caregivers’.
Just a few statistics in eating disorders – devastating illnesses with physical, emotional and mental health implications and until very recently a relatively neglected and under-resourced area of medicine. It is estimated that in e.g. USA, around 1 in 20 young women in the community has an eating disorder (anorexia, bulimia or binge eating disorder).
And one more statistic – anorexia nervosa has one of the highest overall mortality rates and the highest suicide rate of any psychiatric disorder. The risk of death is 3 times higher than in depression, schizophrenia or alcoholism and 12 times higher than in the general population.*
All over the world people have been debating the rights of family carers, including what information they need to provide effective care, as well as the rights of vulnerable individuals needing extra care due to challenging conditions.
Statistics in other challenging conditions…
Think of the possible numbers worldwide of these informal carers who give their time, energy and finance to support a loved one, including those who care for individuals with an eating disorder, often over long periods of time…the numbers are truly mind-boggling.
‘Family – and friends – are vital to the person getting well and staying well because they’ll be with them for decades.’ Ian Cook, MD, University of California, Los Angeles, a quote I found when I typed in ‘caregivers – schizophrenia’. The same quote could be applied to so many conditions. Carers – sometimes also known as caregivers – their support efforts and how they cope, are crucial to the wellbeing not only of individuals and families, but also to every community.
ED Charter Taskforce Teleconfences
My daughter Jay was thankfully well on the way to recovery from anorexia, binge-purge type, when in 2005 I was invited by Dr (now Professor) Ulrike Schmidt to join an international AED Taskforce of professional and home carers to develop a charter for action on eating disorders.
Based in a small town in northern Scotland, it was amazing to me to be given a specific time to dial up a series of numbers, hear a disembodied voice ask which conference call I wished to join, then be linked to people scattered all over the world – most of whom I’d never met, people I could only imagine from the voices and accents I heard on the monthly teleconference calls.
Led then by Eric van Furth of the Netherlands, the 8-strong taskforce also included world- renowned professional carers from USA, Australia, Canada, UK, and home carers from Australia, USA and UK.
Coordinated to allow for huge time differences across the world (with some members connecting early morning in their country and region, others late evening …and every time in between), and fitted into extremely busy lives, each call was focussed on a clear agenda and followed by a flurry of emails as all the points raised for action during the call were explored…which led to the next call, the next agenda.
Launch of ED Charter 05
The result? – a year later, in Barcelona at the International Conference on Eating Disorders, I stood on the platform along with Eric van Furth to launch the new worldwide charter for action on eating disorders…many signed up to the charter on that day, as individuals as well as representatives of their area, their country.
The Rights of People with Eating Disorders and their Carers –
The right to
- communication/partnership with health professionals
- comprehensive assessment and treatment planning
- accessible, high quality, fully funded, specialised care
- respectful, fully-informed, age-appropriate safe levels of care
Right of carers to be informed, valued and respected as a treatment resource and to accessible, appropriate support and education resources.
And what of Responsibilities?
This Charter calls upon those Responsible for Policy and Practice to –
Educate and inform the community with programs that
- de-stigmatise eating disorders by promoting the understanding that an eating disorder is not an illness of choice, and by raising awareness of the causes of eating disorders
- increase public awareness of the signs and symptoms of eating disorders
- make available comprehensive information about eating disorder services and resources
Connect with the media to provide accurate information on eating disorders and to help shift the cultures perspective on body image issues, and weight and food issues.
Develop and implement effective prevention programs targeting schools and universities.
Educate and train healthcare practitioners at all levels in the recognition and treatment of eating disorders to improve the quality of care.
Provide sufficient specialist services based on regional need.
Provide people with access to fully funded, specialised treatment and care.
Fund research into eating disorders.
Whatever the condition, whatever the extra care needed, wherever and whenever and in whatever country or region or circumstances – carers themselves need information, support and help to allow them to continue in their caregiving role.
The rights and responsibilities outlined above for carers, both home and professionals, of people who have eating disorders, were developed by an international team of professional and home carers.
How do they compare with identified rights and responsiblities for people supporting individuals with a condition or illness of which you have experience?
For full Worldwide Charter for Action on Eating Disorders, and other information on eating disorders, see www.aedweb.org
For further information, see ‘Anorexia and Bulimia in the Family’ , and ‘Skills-based Caring for a Loved One with an Eating Disorder’