ED Transitions Module 3
Digging Deeper - Preparing For and Talking About Transitions

L - How do you decide when to have a conversation about transitions with the young people in your service?

E - It really depends on what age they came to us. If it's someone who's 17, 17 and a half, rising 18, then it's probably a conversation that we'll have really from the beginning…That conversation would also be our conversation we have with all patients about expected treatment length. And so really for someone who was going to be with us long enough to complete treatment, we might not have that conversation until it's looking very much like they're not going to complete treatment with our service. And then we would want to do that well in advance of their 18th birthday. So we can really contain any anxiety, make it clear that we've got good collaboration with our adult colleagues, that will be alongside them as we approach that transition and make that transition and that they will meet someone before they actually turn 18, someone from the adult team with us. So for those patients, we might start talking about it right from the beginning, if they're approaching 18.

For patients who are 17 for example, we might not have that conversation early on. We might have to wait and see. But as treatment progresses and if things are looking like they're not going to be completed with us in the child adolescence team, then we will again want to start having conversations with them well before their 18th birthday and think about making a referral. Sometimes we'll talk about making a referral maybe when they're 17 and say 8 months… and talk about it in terms of a sort of insurance. Not that they necessarily will have to transition, but that it's really important that it's in place if they need to continue their treatment with the adult colleagues.

L – Thanks, that's really interesting. You've mentioned before using the idea of a transition as in a motivational stance with some young people, particularly sort of being newly referred perhaps in their 17th year. Can you say anything more about that?

E - So we always want to talk positively about any transition and I think we can do that really, genuinely because of our close working with our adult colleagues. But we also sometimes want to say to young people, look, you could actually complete treatment with us. You may not need to have a transition if you can really trust what we're trying to do together and you can really engage with us and trust the process. So you may be able to complete treatment with us and you might not need a transition. If you need it, we'll work on it and we'll work with our colleagues in adults to make that as smooth as possible and as safe as possible. But there's an opportunity to maybe not need to transition. Does that make sense?

L - Absolutely. And I really like how you put that, that you know, to trust us and trusting the process. That feels really comforting to listen to from where I'm sitting. So when somebody does have to transition, can you see any opportunities for young people and families, when that is the eventuality? Whether it's because they want to, whether they've actually made a good recovery but they feel like they just need a bit more support with relapse prevention, or whether it's because actually they really

are still quite unwell and need a lot more support. How do you talk about that positively with them?

E - We're using family therapy for anorexia nervosa mainly for our patients and I think sometimes we would look to the model and think about phase three. And phase three being a time where you're really wanting to promote more independence. And that really fits with the idea of. seeing yourself as a patient in your own right and maybe still having your family there as support, but also sort of taking a bit of responsibility for your treatment going forward. And I think you can mark that with the transition to the adult service and say you've worked really hard to get yourself in this position where we can even be thinking about really progressing with phase three now. So this is an opportunity for progressing with phase three. And if they're struggling with phase three and they're not able to really make that step into taking some more responsibility, then I think we have to talk about the transition as a really safe and containing option for them. That it means a continuation of the care that they're going to get from services. That's that will still be at the center of treatment, is what they need. And at that point where they're still struggling, there will still be people to support them and a team around them. So I think supporting them to feel safe and contained is really important if they're not doing so well with us and they do need a transition into adults.

L - And what about families, how do you talk about it with them? Is it similar, or might you say something different, that emphasize different aspects of what's going to happen?

E - I think it's pretty similar, and a lot of these conversations will be happening with the family in the room anyway. But I think it's really important for the parents of a young person who's been in our service maybe for quite a long time, that we have to also start talking about the differences because there's all of that, the legal differences around becoming an adult. And although some of that is very sort of meaningless in some senses, it is also important that parents understand that there's still treatment on offer. There's still support for their young person, but the young person is going to be an adult in their own right. And there's still a lot of collaborative conversations that need to happen about what that's going to look like for that young person. So I think it's difficult for some parents moving from family therapy for anorexia nervosa with a child, to moving to maybe that again, or to a different treatment option, and their child being seen as an adult. And I think it's our responsibility in child and adolescent eating disorders to really start having those discussions in therapy with families. So that it's maybe not giving false reassurance, but not leaving parents feeling like they're facing a sort of cliff edge where they're going to have no support, where they're not going to have any connection with what's going on with their child or adult once they're in adult services.

And lots of, you know, lots of parents really appreciate that conversation because they are worried about what that will look like, especially, as I said, for the patients who've been with us for quite a long time, maybe.

L -Yeah, I'm sure they do. Do you ever come across any instances where young people really want to transition, where they feel like actually this is an appropriate step for them?

E - Yeah, absolutely. I think I would hope that most of them feel like that….There may be some disappointment that they've not maybe achieved the goals in order to be discharged from child and adolescent eating disorders. But I hope that for most of them they see it as you know, a positive opportunity to be continued with adults. I hope we never talk about it as some sort of failing on their part or their parents part. You know it really isn't the sort of conversation we'd want to be having with families. ..I think it's helped because of the pathway being really helpfully planned with adult colleagues that we can genuinely have a positive conversation about it. I'd say with most families, I can't think of an instance where it's been a negative conversation.

L - I suppose I wasn't thinking of a negative conversation, but more about actually it being a good next step, an opportunity. My experience is that for some young people, there's definitely a sense of loss. And they've got to know colleagues in child and adolescent services.

E - There would be a sense of opportunity for a lot of young people, I think. But certain things help with that. I think for example, the university, preparing for university group, is just such a hopeful sort of thing to be involved in and it is marking the fact that we're looking forwards and we're looking forward to their independence. Those things that are on offer from the adult team I think really help with that sense of keeping the positivity going. And that actually there are different opportunities when they go to adults because there are things that we don't really focus on so much because it's not our work. But preparing for those things in adulthood I think and independence are ways that we can really promote more positivity about that change. And that young people do appreciate that, because they're excited generally, if that's their plan, excited to be moving forwards.

L - So sometimes actually the transition is an opportunity for them to access more interventions and support that's relevant to their life stage and where they're heading. Not just a reflection of their recovery.

E - And you know, that sort of fits again with our model of making life bigger. And so that would really make sense to them because we would have been talking about that through treatment anyway. How can they make life bigger? How can they have a future focus? So absolutely.

L - Thank you very much, Esther. It's been good speaking to you today.

E - Really nice to speak to you as well.

CAMHS treatment

L was diagnosed with anorexia nervosa (AN) at 15yrs old. After receiving Family Therapy for AN under CAMHS, she made a full recovery with weight restoration.

When L was in her second year of A-levels, she started to lose weight again. She was referred back to CAMHS for a second episode of care, where she was diagnosed with atypical AN. On this occasion, L elected to receive individual treatment, attending 20 sessions of CBT-E.

Although L completed the CBT-E course just prior to her 18th birthday, she was unable to make significant changes to her ED symptoms and remained at an underweight BMI. Feeling “stuck” in her recovery, L and her CAMHS clinician felt that she needed further support when going away to university in September. L was therefore referred to AMHS.

Reflections

• Age 17-18 is a developmentally vulnerable period. A transition from CAMHS to AMHS often coincides with exams and/or moving to university. This can be a stressful experience, which may be reflected with an ambivalence about recovery.
• In this case L was referred to AMHS. Other patients may choose different options, which best suit their individual needs. Alternative options may have been:
  • L being discharged after her 20 sessions of CBT with CAMHS, if she felt she was in a better place with her recovery
  • The CAMHS therapist providing the follow-up sessions, if L felt only a few additional sessions were needed in lead up to her 18th birthday

Transition process

L was referred to AMHS three months before her 18th birthday in March. She had the first few joint transition planning sessions with CAMHS and AMHS with her mum present. This gave L the opportunity to discuss the areas she had worked on in CAMHS, the areas where she needed more support, and what to expect from individual therapy sessions in AMHS.

After a final joint planning session after her 18th birthday, L started on the low intensity treatment pathway under AMHS, which consisted of 10 monthly CBT sessions over the period of a year. During this time, L finished her A-levels and took up part-time work over the summer break. She maintained her weight at a BMI of 18.5, although she was still occasionally binging and purging and body checking.

Reflections

• The offer of monthly sessions took into account L’s wishes for a more flexible treatment plan, allowing L to continue to receive ongoing support for her ED symptoms while giving her time to focus on her exams and part-time job.
• Although some patients may have wanted to try a different type of therapy in AMHS, L and her therapist decided to continue with CBT for the full course of treatment, with NICE guidelines stating that CYP and Adults can receive up to 40 sessions total.
• Starting treatment and developing a relationship with a new (AMHS) clinician also takes time. The monthly sessions gave L a “break” in between therapists, allowing her to acknowledge the importance of her previous therapy under CAMHS.

AMHS treatment

L started university in September. She found herself enjoying her freedom in a new city and made a close friend who motivated her to work on recovery. A couple of months into university, L decided to ask her AMHS clinician for more frequent CBT sessions to work on reducing her ED symptoms. These involved behavioural experiments with body checking and body avoidance, as well as a focus on nutritional changes and weight gain. These went well - her anxiety and body checking came down, as well as her binging and purging.

Following weight restoration, L had a few monthly follow-up sessions to maintain her recovery and to focus on relapse prevention. L was then discharged in the summer, at the end of her first year at university, having received 14 AMHS sessions in total.

Reflections

• Although L chose not to involve university services, other patients may find it helpful to access their resources and the additional support offered.
• L leaving for university, while still receiving treatment, is an example of positive risk taking. A young person’s capacity and motivation to recover can be renewed following a transition, e.g. to AMHS or to university. A transition offers a “fresh start” and an opportunity to re-engage with treatment, whether this is with a new AMHS team or with a different treatment approach.

Case study 2: CAMHS to AMHS transition with a high-risk patient

CAMHS treatment

E, diagnosed with anorexia nervosa, was referred to AMHS in August. He was turning 18 in December and had recently started the day programme at CAMHS, having been discharged from in-patient CAMHS. While in hospital E had quickly reached a borderline healthy weight, although there were concerns about his lack of motivation to maintain weight following his discharge.

Reflections

• If a young person is more high-risk, the transition process should ideally start at the earliest opportunity. This allows time for several transition planning sessions with CAMHS and AMHS. This is so a relationship can develop with the new team before the young person transitions, so they (and their parents) are not starting afresh when they get discharged.

Transition process

Transition planning to AMHS was a very involved process. E’s parents were concerned about being much less involved in E’s treatment in AMHS, feeling like they were “handing over responsibility” to a new team. E, however, expressed few concerns about the transition process, and was looking forward to the opportunity to have greater independence from his parents.

There were 3 joint transition planning sessions with CAMHS and AMHS, as well as additional sessions with just CAMHS. As E wanted complete confidentiality, he attended the first joint session alone, with E and his parents then attending the following two together.

Reflections

• The option of attending a transition planning session without parents can give the young person space to discuss what their parental involvement had been to-date, as well as how involved they’d like their parents to be with AMHS.
• Having a transition planning session with both parents and the young person lets the parents discuss how they might share information with AMHS if they were concerned, while respecting the young person’s autonomy and right to privacy.

AMHS treatment

When coming to AMHS, E refused treatment (MANTRA and CBT-E) but agreed to attend for fortnightly physical monitoring. He felt like he was “in control” of her eating disorder and that it was his decision not to have further treatment.

After transfer of care, he lost weight rapidly over the first few months and almost faced an admission. E then decided to restore weight of his own accord. He was discharged following full weight restoration, having never agreed to further treatment under AMHS. His parents, however, did take up the offer of post-transition support, to help them adjust to less involvement with E’s treatment and manage their anxiety. They attended a carer skills workshop and a drop-in carer support group, run by an ED specialist nurse who had a lot of experience with supporting carers.

Reflections

• There are many different reasons (and approaches) that may help a patient become motivated to restore weight. Speculatively for E, physical monitoring may have involved a doctor that helped him change trajectory, after having a frank discussion with him about recovery. Alternatively, some nurses who offer monitoring do this in such a supportive way, that that in itself is incredibly containing for patients and facilitative of change.
• Offering a variety of post-transition support options can be very helpful for parents. For example, having an AMHS team member to discuss concerns with, who is not involved in the transition process itself, can be a useful option for parents when the young person is particularly concerned about confidentiality.