As parents of children with additional needs, we learn language, systems, processes that become our norm. When a child has physical needs such as low muscle tone or hypermobility (and any number of other issues), we learn to manage physiotherapy appointments. These might happen at school, often delivered by a teaching assistant, or you might have hospital sessions, and then keep exercising at home. But what happens when your little boy or little girl turns 18?
Physiotherapy services in the adult world of the NHS are quite different and it can be a shock to the system to know that from one week to the next you may be discharged, with no real plan moving forward. So what to do?
Each family and each young person is different, but here are a few thoughts:
Get to know your GP – really well. Take the time to build a relationship with them, and encourage your young person to get to know them. This will take TIME and perseverance, especially if your youngling is anxious or struggles with communication. When they get called for a flu jab (if relevant), encourage them to make the call to book an appointment. It might help to give them a script, or practise the call. We’ll talk about this more another time.
The GP can make referrals to physiotherapy, usually in batches of 6 sessions. They can and do make repeat referrals, but there isn’t really a way to get the kind of therapy that you will be used to. This can be really difficult, because you won’t be able to build the kind of relationship that you may have had (or your child may have had) with a therapist or that one person who did the work with them every session.
So what are the other options?
- Private physiotherapists: an option for those who have the means and which will be ideal for some, but not necessary for many young adults.
- Personal trainer: you might choose to ask your current physiotherapist to write a report or even pay for a meeting between them to ensure your young person’s needs are understood.
- Sports: what sport would meet need? Think about how this option will help your young person connect with others and belong in their community. This could be through a club, or a gym membership.
Remember that your little boy or little girl is now a young adult and our job as parents is to help launch them safely into adult life. So take a step back and think about what needs the current physiotherapy is meeting – how much of it is habit, how much of it is essential healthcare, and how much is necessary physical maintenance?
Then consider what he or she could put in place in their life that would meet that need in a way that mirrors what their mainstream peers might be doing…
Good luck – and let me know how you’ve navigated this issue, or what your thoughts are!
PS. For those of you with very complex young people, you may be looking at long term support from the NHS, called “Continuing Health Care”. Should your child meet the criteria, physiotherapy might be included in their care package. It’s important to understand that criteria for CHC are extremely strict and only a very small minority of children who had EHCPs and high support in childhood will be eligible.