Service User Involvement
Date: 26/08/2014 Host: @pixiegirle
Service User Involvement
Date: 26/08/2014 Host: @pixiegirle
OT and Eating Disorders
Last week, @pd2ot hosted an #OTalk entitled “When Occupational Therapy Goes Wrong” (the transcript of the chat can be found at this link). Following this chat, we invited people to continue the conversation, unrestricted by Twitter’s 140 character limit:
— Clarissa (@clissa89) September 18, 2013
I was pleased to receive two thought-provoking responses: one from Sarah (@carerseyes), who blogs about her experiences of caring for her partner with borderline personality disorder, and the other from Linda (@lapsangsusie), who has experienced a range of occupational therapy input as a service user. I’d like to thank both for taking the time and effort to write about their experiences, and welcome further responses from people who have come into contact with occupational therapy services.
The full text of Sarah’s letter can be found on her blog post entitled #DearMentalHealthProfessionals. Here is an excerpt:
You see for me, I don’t get any let up, I cannot go home at the end of my day or shift and sit down and relax, fall asleep knowing that I don’t have to think about any of it until the next day because I have to live with it, even when Chris is in hospital, the problems don’t just vanish because this is my life. I often feel, sadly by some of you that you take me for granted, that I am the first person you will blame when Chris isn’t well, be it because I didn’t lock up his medication, I fell asleep and he left the house or any other number of other factors. Yet I am the last person a lot of you listen to or even think to speak with, I sometimes feel forgotten until you next need someone to shoulder the blame or responsibility. I just want you to work with me, I am there to help you because I love the person I care for very much, I have eight years worth of understanding, please don’t talk to me like I don’t know him at all. While I don’t hold the qualifications you do, while I am not even considered to be employed and I often tackle the daily stigma around all of this, I know more about him than you likely ever will, because it is me who has been his constant for so long.
Linda Bates completed a PhD in medieval literature in 2010. She blogs at lindyb28.blogspot.co.uk on a variety of topics, from ballet to baking, from knitting to novels, but especially on issues surrounding eating disorders…. and her two dogs. She has lived with anorexia since she “gave up eating” at the age of 10 when unwell and unhappy, and is pleased when writing about her experiences allows other people to gain a deeper insight into the illness or its treatment.
Below is the full text of Linda’s letter. Fictional place names have been used(*):
My first encounter with your profession was back in 1989. I’d gone into hospital just after my 11th birthday and spent 6 months there. Most weekdays, my physio would give me a piggyback to the hydrotherapy pool, which was right next to the OT “cupboard”. (cupboard is what she called it. But she also told me that OTs were cockroaches and that green uniforms were vastly inferior to blue ones, so it’s possible that we should take her words with a pinch of salt!)
Eventually I figured out that OTs helped people use a kettle if being ill meant that they could no longer make themselves a cup of tea. My uncle had recently had a stroke so I understood the OTs’ role in terms of the kind of rehab that he had experienced.
I didn’t know about the importance of OTs in a mental health setting until my first inpatient admission to an eating disorder unit as an adult in 1998. I spent 9 weeks on bedrest because my physical health on admission was very poor. So the OT was crucial in helping me to avoid bedrest boredom: she would bring down a tray of craft activities to my room and I’d spend an hour (or however long I could manage) with her, escaping into a crafty dimension that sometimes managed to transcend the restrictions of being confined to a small room, 24/7, on constant 1-1 observations. She would also bring a CD player for guided relaxations.
For the rest of that admission, and the next two inpatient admissions in the same unit, my experience of OT followed the same pattern of offering escape from, rather than addressing of, my mental health difficulties. The exception to this was during my third admission (2003-4) when, in addition to craft and relaxation, I also did some work on cooking, shopping and “snacks out” with the OT team. This has been of limited use in practice because of the inherent artificiality: it is as hard to transfer the process of cooking/eating with an OT in a hospital OT kitchen to the daily challenge of bothering to make food for myself as it is to eat the same quantities and types of food served in the ward dining room seven times a day.
That third admission took place between my second and third years of university and I was very fortunate to work closely with an outpatient eating disorders OT during the 6 months before I went up to Casterbridge* in 2001. With her, I was able to move, at a steady pace, from being unable to eat anything that I hadn’t prepared myself to eating an identical meal at a café to having coffee in Rummidge* Uni canteen (our EDU is very close to the Uni) and eventually even trying some food there. So she helped me by focusing in on the specific challenges that I would face as someone starting university with long term restrictive anorexia. Even though it didn’t make it easy to eat in front of people or in communal settings once I was in Casterbridge, it was vital in productively managing my anxiety so that I didn’t become too overwhelmed to make the important step of moving away to university after a total of 14 months in hospital during the few years that had passed after my A Levels.
During a later hospital admission (2007), I was very pleased when a drama group appeared on the group programme. I was doing a PhD in English literature at the time and have always loved drama, even attending a performing arts boarding school for VIth Form. However, when the group began, the two OTs running the session seemed totally unable to cope when I challenged the printed handouts we were given on Macbeth; it gave a summary of the play that was facile and misleading and, rightly or wrongly, my instinct is always to analyse and discuss literature. The OTs didn’t try to incorporate my thoughts into the group so the whole situation became rather negative and frustrating, probably for them as well as for me. After this session, the group was cancelled. On reflection, I wonder whether the OTs could have utilised the skills of the participants in the group, including my literature and theatre background, to improve the way that the group worked for us. I’m not sure whether the group set out with specific aims but I feel that if participants have existing interest or skills in a topic, it’s possible that this could enhance the group’s success rather than making it a failure. Perhaps the difficulty is that a lot of groups operate on a very hierarchical model: the OT or nurse facilitator has The Knowledge and we, as service users, as supposed to be the empty jugs that passively receive it. This model is particularly problematic in eating disorder wards, where many patients have been through the group programme several times before and therefore may know the assertiveness, or self-esteem, or nutrition course as well as the person delivering it.
In 2010, I had another experience of outpatient occupational therapy, this time with a community MHT OT, who admitted to me in the first session that she’d never spoken to a person with an eating disorder before. Our appointments were the result of the community psychiatrist requesting that I be assigned a CPN (Casterbridge Adult EDS were refusing to offer me treatment for my anorexia so general mental health services were trying to work out what to do with me). The meeting of CPNs decided that I didn’t meet the criteria for their lists and therefore, somewhat randomly, I was assigned to the team OT. I had recently submitted my PhD so she mostly focused on what I should Do With My Life and brought in an [employment service] man to speak to me. He had never worked with anyone with a PhD and had not heard of the type of jobs for which I’d been applying. I was struggling very badly at the time with my food intake and was feeling very low about having no purpose now that my PhD was complete; being referred to a service that seemed geared to finding work for people with very different skill sets from my own actually contributed to my growing sense of despair. The tipping point in this relationship came when I arrived at an appointment feeling quite distressed: I had learned that morning that a friend had given birth, which had triggered some painful emotions about being single, with no prospect of either a relationship, and of how long term anorexia may mean that I would never become a mother myself. The OT’s suggestion? I should go to my GP and ask to be referred for artificial insemination. I don’t want to give BMI info that could trigger other people with eating disorders, but it’s important to point out that the likelihood that I could have conceived at that point, let alone carry a baby to term or find the emotional resilience to care for it, was miniscule. This conversation was so distressing for me that I didn’t make any future appointments to meet that OT. At the next appointment with the community psychiatrist, she suggested that I move back to Rummidge so that I could once again access eating disorder treatment. I followed her advice and was back in hospital within a week of seeing the specialist there.
During the 6-month admission that followed, the unit’s inpatient OT was on maternity leave. She had taken her full year’s allowance and the unit had not paid for a replacement. Therefore the group programme was barely running and rehab activities could happen only when the (extremely busy) nursing staff had enough cover to be able to leave the ward. Obviously, as OTs, you can’t control whether you will be replaced if you have time off work; but perhaps you could stress to management how vital your work can be and the ways that patients will be affected in your absence.
Finally, a few months ago, I attended the day treatment service of the same eating disorder unit. This is run by an OT and she has a lot of expertise in running therapeutic groups, which are very beneficial. However, the emphasis on “therapy” is not matched with equivalent “occupational” focus. My main struggles came with facing mealtimes in the dining room and the OT revealed to me that my anxiety was causing her a lot of stress. She was unable to help me make progress with eating and therefore a mutual decision was made that I should be discharged from day treatment.
If you are still reading after I’ve unfolded this long catalogue of OT experiences, thank you for listening to me. I feel that it’s important to state that I have benefited from occupational therapy and I’m sorry that the focus of this piece has been where it has been unhelpful (although I suppose that is inevitable given that the theme of the OTalk that inspired this post was “occupational therapy gone wrong”). I probably should have extrapolated something tangible from each experience to offer as advice for you all. However, I think that is possibly less helpful than saying that my experiences have happened because of me being me: a unique combination of emotions, slightly irrational love of my dogs, education and 30+ years of living in my head. And you can extrapolate, therefore, that each service user is an individual, with their own patchwork of experiences, talents, likes, dislikes, etc. Listening is more important than talking sometimes and, from this, positive therapeutic relationships can emerge.
Update: You may be interested to read Linda’s blog post, “Talking to OTs”, about her experience of participating in #OTalk and the unexpected challenges of sharing her open letter. Reading this made me value even more the way she and others have shared their stories with us, and the vulnerability that this can bring.