Checking in at Aberdeen airport at 6 a.m. on 13th May, I was not surprised that my case earned a special label Heavy Contents…the taxi driver had used the same words as he carried it down the steep steps before I left home…
I didn’t see the case again until I dragged it off the moving luggage belt at Seattle Tacoma airport. No wonder it was heavy – it carried books, folders and other items for display on the Charter table at ICED Seattle as well as clothes for a mix of weather and occasions; Be Prepared had been my motto in packing!
Putting it together had involved what seemed many small yet important choices – what size of table would there be, how much space available? Would a backdrop be available too? How best to make use of the space? What best to put on the table/backdrop, what books and other items might be worth carrying the thousands of miles between Aberdeen Scotland and Seattle? Best times to be ‘open for business’? How to catch the eye and interest of so many delegates from all over the world? Would people stop and talk when there were so many other displays, workshops, plenary sessions, quite apart from friends and colleagues to catch up with? What could be available for them to take away as a reminder of the Worldwide Charter for Action on Eating Disorders, the result of much hard coordinated work by a scattered team connected by emails and conference calls from Australia, Nederlands, USA, Canada, UK and first launched at ICED 06 in Barcelona?
Copies of the Worldwide Charter were to be in conference packs so, as preparation time was very short, I concentrated on items which I thought might be helpful –
Why the Charter? Who benefits from the Charter? What is needed to implement the Charter? How To implement the Charter?
6 basic Rights…
…to communication/partnership with Health Professionals.
…to comprehensive assessment and treatment planning.
…to accessible, high quality, fully funded, specialised care.
…to respectful, fully-informed, age-appropriate, safe levels of care.
…of carers to be informed, valued and respected as a treatment resource.
…of carers to accessible, appropriate support and education resources.
The Charter also ‘calls upon those responsible for policy and practice’ to offer – appropriate information, education and training programmes; access to funded specialist care based on regional need; to fund research.
Why the Charter?
Under the general heading ‘Informed Care is More Effective Care’, on each of the four conference days Wednesday–Saturday, I displayed a series of outlines of anonymised stories from UK helplines, asking what information and help could/should be offered to the family. (Formerly trained as a Samaritan, I’ve now worked on local and national ED helplines for about 10 years. As well as talking to many people with eating disorders I have also talked to hundreds of family members at meetings and conferences.)
A couple of examples –
My daughter K is 20, she gets very angry when I try to talk to her. Mainly about eating properly, about… She gets rid of all her food in the upstairs bathroom, it’s always a mess when she’s been in and her room is just a tip. It smells too. She won’t see a doctor, says she’s not the one with the problem, but she looks really dreadful. She’s always running and exercising, I think it’s far too much. When I asked my GP what to do to help her, he said he couldn’t talk to me because of confidentiality. I wish I knew what to do to help.
Now she’s been charged with shoplifting in a local supermarket. No-one in our family has ever been in trouble with the law before and everyone’s just stunned, especially my mother, she’s so upset. This is a small town, all the neighbours know about the police being here and all the other kids – K’s one of four – were talking about it at school so K’s brother and 2 sisters are pretty upset by her behaviour too.
K’s been interviewed now by the police and social workers – she told them she took the goods because there is never enough to eat at home and she was hungry! I had to convince them that there’s enough food bought every week.
I just don’t know what to say to K, or my mum, or anyone. And now my husband says he can’t take any more, it’s affecting his work. He’s talking about leaving. I don’t know how long I can cope.
My daughter M, she’s 24, came home from hospital over a year ago much much better. That was the second time she’s been in hospital. At first things were really good, I really thought everything was good. She went back to university, and I really thought… but then everything went wrong all over again and I don’t know why.
The doctor for the students said she wasn’t fit to take her exams and she came home. She looks like a walking skeleton again now, all the screaming about little things has started all over again. And she won’t go to the doctor. I really don’t know what to do. I tried to phone the consultant who treated her last time – his secretary said he couldn’t talk to me, no-one will talk to me, and I don’t know what to do. I wish someone would tell me what to do. I worry a lot about maybe I’m doing the wrong thing, maybe making things worse for her…M says I don’t love her no matter what I try to do or say.
I’m exhausted. I feel sick with worry, I can’t sleep for worrying about her, I’ve had to stay off work.
Carers’ lack of information means lack of continuity and fragmented care – fragments (an hour every week/fortnight/month?) of specialist care interspersed with all the other hours in between. In this scenario, is it possible to create Best Care on a 24-hr/365 basis?
Without continuity even the very best professional efforts, even the greatest motivation at the end of a therapeutic session, can unfortunately evaporate.
Who needs information? Why? What information?
Being equipped with the necessary tools and materials is crucial to successfully and effectively tackling any problem …moving house, setting up home for the first time, preparing for a new job, going on a long journey, mending the roof, building a shed, whatever. The same is true in trying to set up 24-hr Best Care when coping with chronic illness in the family.
Whether physical or mental illness, or in eating disorders a devastating mix of both, carers learning about best support possible (an essential toolkit for their task) is crucial:- what might be expected – how best to respond, especially to difficult behaviour – what to try to avoid – how they may help motivate towards change – when to call for professional help… All these, especially in the early days of these illnesses, may make the difference between recovery or chronic illness over years. Or sadly in some cases, tragedy. (I now know several people whose loved ones died. I often wonder if my daughter’s illness, anorexia nervosa, binge/purge type, might have been of shorter duration and recovery been achieved much sooner than over 7 years, if I’d had practical information to help me support her more effectively right from the beginning. When Jay at 23 refusing all treatment when it was suggested she should be admitted to hospital because her potassium level was so low she was at serious risk of a heart attack, with no information or support I felt I was in a black hole with no light whatsoever in sight)
Without relevant information – about their loved one’s illness, about common behaviours and best responses, about what to try to do and what to try to avoid – no matter how they want to help, home carers are handicapped in their efforts to provide the most effective support possible for their loved ones.
My daughter is now well. It could so easily have been otherwise.
Where can home carers find the much-needed information?
Much information is available – if you know where to look. Informal and home carers can find what they need in their own situation in several ways – perhaps by talking to family and friends, colleagues and acquaintances; by looking for helpful and practical books, by checking for information on the internet…. But the information found may not be up to date and accurate – 12 years ago, when my daughter told me of the diagnosis, I was handicapped by never having heard the phrase ‘an eating disorder’. I eventually found some information about anorexia, but most of it turned out to be out of date, inaccurate and gave no practical suggestions about what might help my daughter.
Professionals sharing relevant information, including simple pointers to where to look for accurate practical resources – a list of reliable books and websites, useful contact numbers, any local support groups – can be invaluable in creating the most effective all-round care possible when their patients and clients return to the world outside the treatment centre.
But…what about confidentiality?
Individual patient confidentiality is of paramount importance, and no specific personal and confidential details can or should be given without a patient’s consent – but general information to support effective ongoing care efforts need not break individual confidentiality.
And, as it could make a positive difference to effective a patient’s home support, rather than asking Do you want someone to support you? – asking Who would you like to support you? can make a huge difference.
Based on years of experience and research of what is most effective in therapeutic settings – for instance, at the Maudsley Hospital, London UK – series of practical workshops offer carers recognition of how important their responses are in various situations, how these frequent informal interactions can help or hinder individual recovery. Sharing and discussing common problems and best responses in a workshop situation also gives help with their common feeling of isolation in extremely difficult circumstances. And practising the best possible responses in a safe and confidential environment, rather than when an explosion occurs at home, make them easier to remember when really needed and under pressure!
Who benefits from all this information-sharing, practical workshops, coordinated support efforts?
“My mum comes to pick me up, so now instead of waiting outside she’s with us for the last bit of our meeting…and I tell her what my targets are for next time, how she can help me keep on track, what to do to help me when I get upset. Before, I was fine until it was time to eat – then everything fell apart! It’s much easier now my mum knows what to do, how to help, and she’s explained to my little brother too.”
Charter table – end of ICED Seattle 08
Despite the great busyness of everyone – all trying to fit as many workshops, plenary sessions, presentations, as possible into their conference days – many people stopped every day during ICED Seattle 08 at the table I shared at times with Susan Ringwood, Kitty Westin, Jan Clarke, all Charter Taskforce members. They stopped to read and discuss the real-life stories of home carers (“Gives a rather different picture to the one side I hear at work!”); to examine and discuss the few books and materials I’d been able to take with me for display; to pick up available leaflets including b-eat, NEEDS Scotland, EDC; to talk about the situation in their own countries and how the Charter is being or could be incorporated into their work… Fascinating days giving insight into the wide variations of experiences of eating disorders, personal, professional, treatment and resources across the world. And the sceptics? They stayed away. I wonder why?
And when the conference ended I found that my suitcase had become even heavier – on the Gurze bookstall, an excellent resource for all carers professional and home, I’d found some new and very practical materials to take back for the NEEDS Scotland library…