Tomorrow I’m heading south to attend the 2017 National Carers Conference in Eating Disorders on Friday 23rd June – I’m looking forward to meeting up with home carers, possibly even some whom I met when my dear Jay was so ill, as well as with Professor Janet Treasure and other professionals who have encouraged me in recent years to write non-fiction books for carers both home and professional… After we met at a conference, it was thanks to Janet’s interest and encouragement that I first started writing non-fiction books based on my own experience as a home care giver.
When Jay was diagnosed Initially, although I’d heard the word Anorexia, I had never even heard the term ‘an eating disorder’ – a major handicap in trying to find out what I could/should do to help Jay. Despite searching in bookshops and various libraries, I could find no relevant information let alone personal support… and when I visited our GP and asked that question, he shrugged and said ‘You know as much as I do.’ Much later I realised that GPs were trained to recognise symptoms, make diagnoses – but rarely had personal experience of building all-round home care in serious health conditions.
Eventually I found a local support group North East Eating Disorder Support (NEEDS) Scotland; worked on Eating Disorders Association (EDA) telephone helpline (now b-eat UK) and listened to the experiences of many other home care givers. At that time it seemed that family and other home caregivers I talked to – perhaps parent, husband or wife or partner, friend or relation or colleague – were given very little or no relevant information to support their caregiving efforts. At that time, in medicine, personal confidentiality meant that professionals alone made a diagnosis, recommended and carried out relevant treatment e.g. operation, medicine, personal therapy. Very little or no information was given to home carers.
Thankfully Jay is now well recovered, working full-time and living independently – wonderful to see her! Having talked to so many family and other home caregivers over the years, I know that it could have been otherwise.
Over recent years attitudes have changed, with recognition that to build the best possible care for any vulnerable individual, whatever the illness or condition, ‘informal’ home care givers need relevant information about the illness or condition affecting their loved ones and how best to try to help and support. And from that recognition, a much more collaborative all-round approach has developed in difficult health conditions, whether physical or mental health issues, or a mix of both as in eating disorders, with relevant information given to the vulnerable individual at the centre – and to home caregivers about how to build the best possible all-round 24/7 care and communication.
The 2nd edition of ‘Skills-based Caring for a Loved One with an Eating Disorder’, the book I helped co-author with Professor Janet Treasure and Dr. Anna Crane, will be featured and on sale at the Carers Conference – a wonderful project to be part of, with a co-operative team of authors with wide and varied experience in eating disorders, and a home caregiver whose daughter is now well-recovered.
All the very best in your own situation.