We’ve gone private. I never thought we’d ever do that. Honestly. Because I believe in the NHS. Despite May being born in the care of the NHS and feeling that the birth went wrong, I still believe that she is seen by some of the best medical professionals in the world.
Unfortunately, physiotherapy is not one of those areas. Originally, I was satisfied with the physio. Yes, I had my issues. But, I voiced them, and I felt they were seen to. Then came the crushing realization that May deserves better.
I don’t use the word “crushing” lightly. That’s how it feels. May deserves something, anything more than a physiotherapist who is reluctant to touch her.
Which leads me to the embarrassing, humiliating and, again, crushing experience of meeting May’s new private physio. That I felt these things is not her fault. It was the combination of seeing how beneficial she would be for May and having to justify the physiotherapy May has received so far.
These were the completely LAME answers I had to give. (SIDE NOTE: When will I become a good liar? Much less embarrassing.)
Her: How often does she have physio? Once, twice a week?
Me: Er, once a month? Maybe?
Her: And, what happens during these sessions? What does she do with May?
Me: Um, she’s kind of hands off.
Her: “Hands off?”
It was a statement rather than a question. A statement of total disbelief and disgust mixed with horror.
Hindsight is a brutal thing. I would give anything to go back and give May the physio she really needed over the past year. What a crucial year it was and now is lost.
Here’s what really gets me. Both May’s previous physios explained to me that physiotherapy was something they would instruct me to do with May. In other words, they would assess her needs and I would deliver it. When they explained this, there would always be this moment at the end of the conversation where they would say something like, “You do understand that right? Because some parents think it is our job to do the physio, or to come every week. And we just can’t do that. That is where you come in.”
And, I would nod.
But, now I see they were pushing that concept on me. Because it isn’t black and white – as in, the only options are 1) they do all the physio – unreasonable, or 2) they instruct and I do it – reasonable. There is a third option, where the physiotherapist works with us once a week, notes May’s progression, stretches her and does activities with her and THEN I try my best, in my untrained but motivated mama way, to replicate a small part of what she has done throughout the rest of the week.
That is what works. The only reason it wouldn’t be the case is either 1) laziness, 2) lack of resources or 3) lack of imagination.
As evidence that there are other things, new, simple things (that is the horrifying bit – how simple these things are) that we can do with May to help her progress:
Want to read more from Stacie? Check out her posts on BabyCenter’s Momformation!
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Boy do you know how to title a post. I thought you were going to say you were making your blog private.
Oh no. I better change it! I didn’t think of that. “Going private” is a pretty common term here in Britain.
I also thought you were making it private as well. I am sure you have done many things for May in the last 2 years that enhanced her physio. I don’t want you to beat yourself up as you are the most proactive parent I know with a special needs child. No professional can expect to teach a parent what to do once a month because strength changes daily and needs to be adjusted accordingly. At least you found out and now is the time to change and you are. Cost of course I am sure is more but in the end you will be happier with the results. You are going from no direction but your own brilliance to having a trained person who you can talk to and who will teach all new things. If the region doesn’t do right by May can you get special funding to help supplement the private pay approach? I am curious if you ever considered suing the doctors who were involved in May’s delivery? I have come to believe this was doctor error in my mind.
Title now rewritten! Hopefully causing less confusion!
In regards to suing the doctors… I have looked into it and so far no one has been able to find any point where the staff acted negligently. But, I may ask someone else to take a look just to make sure.
I’m doing the same thing with speech therapy now. Regreting the lost year, & scrambling & soon paying out of pocket to catch up… ouch.
Stacie, How about letting you go so long in stress before they took May. Seems like so many things were not checked in a timely manner that brain damage occurred from lack of oxygen. I have seen it happen before especially if nothing showed up on any scans. Sounds like it all distressed and compromised May’s oxygen levels.
I am very excited by the possibilities for May with her new physio. Congratulations on researching and selecting the best resources for our special little one. XOXOXO
Good for you. Out of interest (and a blatant attempt to hijack all your research methods like the worst kind of cheat), how did you pick your private physio?
I used a couple of methods, all involving the advice of other parents. 1) I asked them what method of physio they used and looked up that on the web. 2) Asked them specifically who they used. I didn’t feel comfortable using anyone with a personal recommendation. If you are involved in any group for special needs kids (like I am at Small Steps) you can ask them.
I’m confused I read it twice are you saying they don’t hold her or touch her right? Isn’t that a physio in the photos working with her? So they are telling you what to do at home but not helping you with May showing you how to do it the right way? What will happen with a private Physio? What do you hope they will do differently? Sorry I am lost on this one.
May’s old physio didn’t touch her. I’d have to ask her to touch May to stretch her, or check her tone – because on her own she wouldn’t do it. Which seems weird, right? Basically, she showed me some stretches when we met for the first time, and then she expected me to repeat those. I don’t mind repeating them – but she saw May for a year and never changed a single thing. She also didn’t really work with May ever again herself. When I looked for a private physio I had to explain what May’s previous physio had done. We have to pay for the private physio but already she has given us new things to do with May which seem promising.
Does that help?
So glad she’s finally going to get that vital input. Please complain about your NHS physio though, the way they operate is shocking – and they clearly primed you to think their approach was normal. Still angry for you.
In my pre-child career, I was an NHS hospital manager (terrible confession, and please don’t hold it against me!)… and please, Stacie, you must complain about the physio…if not for May, then for other children out there. That is NOT acceptable professional behavior. You may complain directly to the hospital or trust by whom they are employed, or to the Health Professional Association, with whom they must be registered to practice.
I know that this probably seems like ‘just one more thing’ you need to do, but I would strongly, strongly, urge you to.
Having said all that, it sounds like you have a new physio with an excellent attitude. I am so sorry that you had to go private to get that, but I am excited to hear how she progresses!
This will sound strange, but in other areas the physio has been good. She has managed to obtain a lot of expensive equipment for May, she fits May’s lycra suits – even today she phoned to say she’d set up hydrotherapy sessions for May in another borough. So my feelings about her remain mixed. That said, once this term is over and May starts her special school, I will have to say something because it is wrong and I can’t stand the idea of another parent (and child) going through the agony I have felt over it .
I wish you didn’t have to feel bad about stuff that is out of your control. Being crushed, that’s awful. You are learning all of this as you go (as if you need me to tell you that), and to some degree you do have to simply put your trust in people who’ve got more experience. I am glad you feel so good being in this new situation, though I do hope there is an answer to the cost of it.
I’m sure you know this much, much better than I do, and it kind of seems like you were kidding, but you shouldn’t lie to medical professionals! Their job is to help, not judge. They don’t expect us to know everything—all they want from us is to be upfront with necessary information and willing to work with them.
Best of luck with the new therapy!
I was kidding. Also, if you were so sure I knew this, why did you feel a need to instruct me?
I apologize for being presumptuous—it’s just that your experience with being embarrassed in front of a medical expert struck a painful chord with me. I only meant to express my solidarity with you in coping with the discomfort of telling the truth.
How is May getting on with her glasses?
Not sure yet. She doesn’t mind wearing them, but it is difficult to tell if they are making a difference.