For many individuals with HH, transitions can be difficult. It can be a challenge to transition from one activity to another, transition from one school to another, and it can be especially difficult to transition from adolescence to adulthood. Each of those could be a blog itself. But today, I am talking about one of the most difficult transitions of all – gearing up to transition from pediatric medical providers to adult medical providers (some of which are NOT so specialized when it comes to HH)!
This week I presented at the Annual Children’s Neuroscience Symposium here in Phoenix, AZ hosted by Barrow Neurological Institute (BNI) and Phoenix Children’s Hospital (PCH). My topic was titled “Preparing the Complex Neuro Child for Transition – A Parent’s Perspective”. I arrived early and was looking forward to hearing the doctors that were presenting ahead of me – hoping to hear about all the wonderful programs that were available to help transition their difficult patients to adult care. Unfortunately, I was extremely disappointed at what I heard.
I did appreciate hearing the other side of the story – what really goes on behind the scenes for the practitioners. I was a little surprised by the number of speakers who felt there was an unreasonable burden put on them to make the transition happen smoothly. They spoke of limited resources, limited time available to make a proper hand-off, and the pushback they often get from adult providers who don’t want to take on the difficult patients. For some adult providers, there is also the concern that they do not have the experience to treat those with rare disorders – like HH. Of course, there was also the not so subtle reference to the “Pushy Parents” that expect too much. I had to laugh…I was the last speaker of the day and I just kept thinking…what do I say to this audience to avoid having things thrown at me?! Definitely my toughest crowd yet!
I approached the podium and promised them all that I was NOT one of those “Pushy Parents” - but that I would certainly consider bringing brownies to the entire office staff when we have our next appointments! Fortunately, that broke the tension in the room, because we all know that I am ABSOLUTELY one of those “Pushy Parents”!
So here we are – HH young adults and sometimes adults that need to transition – what do we do?
A good place to start is with this very informative Transition Video
It is up to the individual, with the support of parents and family, to begin to take charge and become their own advocate. That can be hard for the young adult and even harder on us parents! When they are ready, and that point is different for everyone, they will feel empowered and more confident in other areas of decision-making. To help the young adult (or older adult) transition, it is helpful to have the following in place:
- Create a portable medical summary – a binder or document on the patient’s phone that they can access.
- Create an emergency care plan for when acute care is necessary.
- Include the patient in the discussions early – you may have to prompt the provider AND the patient not to rely on you, the caregiver or parent.
- Ask the provider to designated a person in the office to assist with transition issues.
- Identify an adult medical provider – ask your doctor for suggestions and a detailed letter summarizing medical issues and medications.
- Ask your provider if they are willing to arrange a pre-transfer visit or joint visit prior to the actual transition date.
Keep in mind, the idea is to facilitate a “Transition” and not a “Transfer” of care. Focus on the patient and creating an environment where they feel empowered during a time of stress and fear of the unknown.
And finally, recognize that Transition is difficult for everyone. There may be multiple providers to transition, new trust relationships must be formed, and you may indeed be required to educate new providers about HH. It is also a time for parents and caregivers to begin to relinquish control, even in the smallest of ways initially. In the long run, the patient will be better able to handle their medical needs as we as caregivers become less able to do so.
www.gottransition.org - Great transition website for families and professionals