Parents’ Experiences Of Having A Child With Anorexia – Fiona’s Story
The mother of a 15-year-old who recently spent six months at Newbridge House for inpatient treatment describes the experience.
The route to diagnosis
One of the first things you reflect on is why you, as the parent, did not pick up on problems and act sooner. We did have some concerns about our daughter’s weight, but it is very difficult to judge what this means, (especially as she had grown taller quite quickly and was eating normally at home) and whether there is a possible eating disorder.
We live in a big house and it was a particularly cold winter, so my daughter was always covered up in lots of layers. It was the school nurse who first raised concerns, and this started the process of diagnosis and treatment. So the first thing I would want to express to other parents is you should not feel shame or blame yourselves for not noticing or acting earlier.
In February 2011 our daughter was diagnosed with anorexia and it became apparent that her thoughts had become anorexic some four to five months before that. She started outpatient treatment in April but continued to lose weight for a further four months.
The search for treatment
By July, I took four weeks out from work to support our daughter who, by this stage, was too poorly to be at school. We were open to the likelihood that she may need inpatient treatment and were told that about 70 per cent of people diagnosed with anorexia do end up having a period of inpatient treatment at some stage. That helped to prepare us for the possibility and soften any sense that we hadn’t done our best for her and by trying to manage at home.
We visited our local inpatient unit in the East Midlands where we live. My husband and I had a strong sense that it was not an environment where we wanted out daughter to be for six months, quoted as the average stay. It was a mixed adolescent psychiatric unit, with young people who had a wide range of different mental health problems and felt cramped and under resourced, with only one small room for family visits shared between 12 patients, and a lack of supportive therapies.
While we were away on a family holiday in August it became clear that our daughter would need urgent inpatient care. I felt disappointed not to have been able to provide the support she needed at home. I am a GP and it is in my nature when I see a problem to want to be proactive and sort things out. For me, part of this experience has been finding it is not always possible to do everything yourself as a parent and accepting this without feeling guilty or inadequate.
Our local consultant had previously suggested Newbridge as an option for in-patient care. We looked at their very informative website and felt strongly that this was where we would like her to be treated. We made contact with Newbridge immediately on our return from holiday and with the help of our consultant and local healthcare commissioners, she was admitted two days later.
Admission and early stages of treatment
There was a sense of relief when our daughter went into inpatient care at the start of September. She was very underweight and poorly, we were stressed, frustrated and exhausted. Despite our sadness, we did feel really confident in Newbridge House in their role taking over responsibility for her care.
The day of admission was emotional and tiring. We felt very welcomed and looked after by all the staff we met. It helped enormously that the environment at Newbridge House is so homely and not institutionalised.
From the start, we felt there was a definite plan for our daughter. The services at Newbridge are very well integrated, so she had all the appropriate support and treatments as needed. So, for example, she was not well enough to engage in individual psychotherapy for the first few months, but supportive counselling and dramatherapy were available, which helped to prepare for psychotherapy. Family therapy was established for us right from the start and that was really important to help us all (both parents and two siblings) feel supported and involved.
We live 50 miles away from Newbridge, so we would visit twice a week. We would also frequently telephone and I never felt a nuisance, no matter how often I called, and there was great understanding and support when conversations frequently became tearful and emotional for her.
The first priority was getting her out of the physical danger zone. Immediately before admission, our daughter’s BMI had fallen just below 13. I would often go into her room at midnight and check her pulse, afraid she might have a cardiac arrest during the night.
Once she was in Newbridge and started to gain weight, there was a huge sense of relief. But at this stage, after a month or so, behaviour becomes more difficult because their thinking has not yet changed and they are battling against increasing weight. This can be an emotionally challenging time so having the unit to share the burden of care was invaluable.
What worked well? What helped?
Family therapy was enormously helpful. We didn’t feel we were being criticised or our foibles as a family being unpicked. It was about supporting the treatment and finding different strategies to apply with our daughter at home. It was good to be able to reflect on experiences and things that had been said, but also good to have very practical advice, mainly through the programme for parents which runs in addition to family therapy. We were also very grateful that family therapy encompassed our other children too and gave them an opportunity to talk and reflect.
Our daughter engaged brilliantly with Newbridge’s dramatherapist and psychotherapist. Our experience is that Newbridge has staff of the highest calibre. During the whole six months of inpatient treatment, there was not one member of staff who we didn’t get on with. Everybody has their own personalities and it is inevitable that we all had our favourites. But with every member of staff, there was a consistency of fairness, respect, kindness and sympathy.
We were also very pleased with and grateful to the school at Newbridge. Like many young people who develop anorexia, our daughter needed inpatient treatment at a key time in her education, in her case during the GCSE year. The liaison with our daughter’s own school was very good. School at Newbridge gave our daughter an alternative focus to anorexia and something she could feel in control of.
Home leave during treatment
When we first considered the prospect of inpatient treatment, I found the idea of our child going away for six months very difficult. It seems such an enormous chunk out of their life and your family life.
I had been due to take our daughter out to the cinema for the first time off the unit at the end of September. The weather was wonderful and warm, so I asked instead to take my daughter home for a few hours where we could sit in the garden together. She was still pretty poorly but I was so grateful for that opportunity.
There was always an enormous amount of consideration and flexibility when it came to home leave, providing it was medically advisable. There was no sense that there was a prescriptive single approach.
By the start of October, our daughter would come home every Friday and Saturday night. By December, we felt we had reached another turning point, with our daughter showing some normal social behaviour, such as being able to go out for a meal and having friends over for sleepovers.
She was at home for four nights each over Christmas and New Year and by mid January, was able to come home and go to her local school on Thursdays and Fridays, stay with us over the weekend, then return to Newbridge from Sunday to Wednesday. That helped enormously in terms of our daughter integrating back after inpatient treatment, rather than it being a sudden shock at the end of a long period away.
Our daughter left Newbridge at the end of February. We felt very strongly that we wanted our daughter to continue her outpatient care there because she had such strong, established relationships with the therapist and we were not sure whether there would be the same degree of consistency locally. We feel very fortunate to have ongoing outpatient sessions with the psychotherapist and nurse consultant commissioned through the NHS.
A couple of months after our daughter returned home, we reached another turning point. Normal life now outweighs anorexia and several days can go by without a thought about the illness coming into my mind or being discussed. If someone had told me last year this is where we would be in little more than 12 months, I would have found it very hard to believe.
If you look at the statistics for anorexia, the mortality rates are frightening. The percentages reported of people who achieve full recovery leave you feeling pessimistic. After our experience, my husband and I feel the model of care at Newbridge House gives you and your child the best chance of over-riding those statistics.
I would say to other parents that a supportive GP or healthcare professional is invaluable. Your GP may not be an expert on anorexia but you need someone who will listen to you, support you and arrange for the help you need. You may need to be very pushy before you find the support you need especially as good eating disorder services may not available on your doorstep. Also make sure that you access support for yourself wherever you can – anorexia in the family is extremely demanding and stressful, and keeping yourself well is imperative for your child’s recovery.
There is no quick fix for anorexia – its treatment will take time and although there are some things you can do, there is much that you cannot do alone, and the most important thing is getting the right specialist care in place for your child.
* Names have been changed in order to protect parent and child’s identities.