Carer empowerment: a personal account of our ongoing journey

On 8 July 2019, the Victoria Derbyshire show discussed the state of eating disorder treatment and the importance of family empowerment. One parent whose daughter has been ill with anorexia for eight years shares her experience.

I start this blog with the word ‘personal’ because I am very aware every family is different, every individual with an ED is different and from that I have been able to note every IP unit, ED service, consultants and staff have different approaches to supporting parents/carers whilst in their services. This blog is honest, very current and will highlight the support we as parents have encountered these last eight years.

At 14 my daughter was first diagnosed with anorexia – she is now 21. Throughout these traumatic years we seem to have used quite a variety ED services, commencing with private treatment until we got into the NHS system, then to a specialist adolescent ED team where we encountered both weekly (sometimes twice weekly) appointments and two separate inpatient stays to transition to adult services in the same county. Two years ago my daughter decided to start university, which meant a transition from our home ED service to another county… two years later and we are where we are today, still in the university county, having experienced a ten-month IP stay, discharge to the community team for six months, then a readmission back into the same ED unit.

So that’s the history. I felt for me to now highlight the difference in terms of support, care/empowerment it’s important to know the journey we’ve had!

As we have been through adolescent services and now in adult we have seen there are a few generic support areas offered. Both services gave us extensive information and literature on what constitutes an eating disorder, both had lists of self-help books, websites and lists on ED groups (Beat being at the top!) and of course the opportunity to attend the monthly CPA meetings, but that’s really as far as the similarities go.

In adolescent services we were very much included in our daughter’s care plan and diet plans. We had a weekly hour session for support whilst my daughter had hers and at the end met for a ‘sum up’ for the week ahead; we had constant telephone support when home life suddenly hit an all-time low; we met with her consultant, lead nurse and psychiatrist once every six weeks for updates. But I guess for us the most reassuring part was we were very much kept in the loop and told what the team were working to achieve. They gave us some knowledge to help us cope and make sense of this illness. We had a three-day family workshop, and the middle day siblings were invited to. For us this was a godsend to meet other parents. The workshop focus was on supporting our daughter, not general support, and clarity/understanding given to us helped so much. In terms of sibling support it was there for my son too. We were encouraged to attend the last session of a DBT course my daughter had been on; when she was in inpatient care we had constant communication and again didn’t feel left out. The team also spent a lot of time getting to know us as a family and took an interest as to how we worked as a family unit, and this in turn helped them to get to know my daughter, her reactions, her history etc. We were constantly asked if we were doing okay, and if not additional support was suggested.

How very different once my daughter was 18. At that stage she was referred to a Tier 3 service CAMHS to wait for a place in adult services. No transition support, just suddenly on our own again. Six months later she had her first adult ED appointment. As parents we had no contact, no meeting, no offer of support; she only met the consultant a few days prior to moving to university, after 15 months of seeing her counsellor. Don’t get me wrong – I know it’s all about engagement and I know my daughter has and still does find this very challenging and I was able to find the contact number of her counsellor and he was very good at taking my phone calls when at my wits’ end and listen to me rant and rave out of frustration, but that’s as far as it went. We never met anyone on that ED team, no meetings, no offer of support.

And then we move counties to another ED service and university… that process of getting into the ED service took three months, although I have to say not due to the lack of trying of the ED team to arrange appointments. This is where I really noticed the confidentially clause/wall of silence take hold. Luckily we had a super consultant who would email and take my calls every so often and this helped so much (he never disclosed personal information on my daughter’s care but helped explain what was going on) but I’ve since been told this was very much not the norm, and now second time around in the same IP ward the consultant is just a name on the wall to me.

There is an extensive patients/carers handbook, which is informative and mentions a monthly one hour carer support group, but for us living many miles away and eight years down the line, we’re more keen to know what’s going on with our daughter, how we can best support, what her triggers are, how we can back up the work of the team encouraging her each day etc. etc. We are invited to her CPA but so much of it is very censored and not read out that I feel it’s just a tick box exercise from a parent’s perspective. I completely understand the need for patient confidentially and know my daughter is quite instrumental in this! Which is fine, however I question if the ‘professionals’ understand the total and real impact an eating disorder has on a family. How can they? Unless experienced first-hand what goes on behind closed doors it’s just not imaginable.

So as of this day, after one ten-month IP stay and now this current one (a few months and counting) I have absolutely no idea what the current ED team are working towards or how my daughter is getting along in treatment. There has been absolutely no attempt or offer of family therapy – this may be at my daughter’s request, but it would be nice to know. This time around my 19-year-old son has really struggled with the admission – he’s lived with anorexia in our home since the age of 11 and although never used to it, can’t remember time without it. He really needed help these past few months but the GP hadn’t a clue where to signpost to, and nothing available to offer in ED services.

I strongly feel it would be very helpful to meet with a consultant/senior member of the team occasionally for an update on how treatment is going (not talking BMI/weight disclose etc.) in terms of reassurance, sharing knowledge of the current situation, letting us know long-term plans, being able to answer the ‘what ifs’. Instead, we have no other option but to guess, to Google, to put two and two together and not always get it right. In my mind, to have a format where parents/carers are listened to when concerns or questions are raised, an area to feed back to and then followed up with an action plan can surely only help provide a more consistent approach to care and support. If I knew what not to say or what to say to back up IP sessions, surely this could only be a positive outcome?

When my daughter was discharged last year, I had no contact, no information about the transition other than what I could read on the community service webpage. There was no communication other than a date for discharge. With current knowledge on what was actually available to her in the community I maybe could have encouraged her to engage more. I guess this should be up to my daughter to share, but we all know anorexia can take a hold and it shouldn’t be assumed that any information is shared!

And finally, community care. I was lucky; I had the mobile of a super kind lady who did listen and support me, but again not formally. There was no formal written or verbal communication, offer of support, or family meetings once in the community team (although once again my daughter may well have not agreed to this). We watched our daughter after discharge relapse quite quickly; we watched her quite literally fade away both mentally and physically week by week, day by day. It took six months for readmission and then an instant section. There must be a reason why and all I would have liked once again is the reassurance and knowledge of why she had to get to a crisis point; then I wouldn’t have had to guess, feel totally helpless and just watch… and be sorely tempted to hit the gin each evening!

And finally, I guess it’s all down to communication and working together for everyone. As a parent you have no option but to almost hand your daughter’s life over to an expert, to put your trust and complete faith in people and a system who have the knowledge and expertise and we certainly have. We are enormously lucky for my daughter to be where she is and have such an amazing and supportive team around her.