Moving around question

chocolatefrog

Hi again, so I’m just wondering about the moving around question and what to tick for the distance my daughter walks. She is an ambulatory wheelchair user. She can walk up to 50m and then gets pain & breathlessness. We have clinic letters stating this. However at school she walks further than that because she won’t use her wheelchair as she’s too self conscious. It’s a small school so the distances generally aren’t great and she gets to rest all lesson. Later in the day she is exhausted and in a lot of pain. If we go out she will 100% need to use the chair. So do I tick 50m or do I tick varies and explain as I have done here? Do they disregard distances walked while in pain / breathless? Thanks! 

Mary_Scope

Hi @chocolatefrog

This is a tricky situation so it's understandable why you're unsure how to answer the question, they definitely don't make it a straight forward form!!

The form is trying to understand your daughter's usual mobility and what she needs to manage her condition so it's not about depicting the absolute furthest she could walk under exceptional circumstances like at school when she's pushing through pain - it is more day to day.

The key information for the form is if she needs a wheelchair to manage distances beyond what she can comfortably walk. Therefore, focusing on the distance she can push herself to at school despite pain and exhaustion won't accurately reflect her needs.

While 50m is a significant distance for her before pain and breathlessness set in, it may not give the full picture of her mobility needs. Ticking 50m implies she can consistently and comfortably walk that distance which may not always be the case.

"Varies" is often used for people whose mobility fluctuates significantly from day to day due to unpredictable conditions. Even though your daughter's ability to walk varies, it sounds like it is more predictable and related to exertion and pain.

From what you have described, it sounds like the most accurate option is likely to be one of the categories with distances under 50m. The category that includes distances your daughter can manage without significant pain and breathlessness should be the one you tick. This is also backed up by the medical evidence you have provided.

Hope this was helpful, please reach out if you would like further support or have more questions 😀

chocolatefrog

Hi @Mary_Scope, Thank you so much for your very detailed and helpful reply, that is much appreciated. Please could I check - In the box where I tell them about her difficulties, would I explain that she doesn't currently use the wheelchair at school? I will be sending in the EHCP which has these references to the wheelchair

'She is reluctant to use her wheelchair whilst at school, as she says it makes her feel self-conscious, even though this causes her to be tired and in pain',

'She experiences significant pain in her lower limbs and requires use of a wheelchair to mobilise around the school'

'Staffing levels must be sufficient to provide individual assistance when she needs to use her wheelchair'

Out of school and away from her friends, most of the time she will use the wheelchair for any distance, but she doesn't use it at home.

From a points perspective I don't think it will have much bearing anyway as she should get 12 points on planning a journey if the assessor scores her in the way I believe they should. But of course I understand it doesn't always go the way you would expect!

Thanks again for your help.

Mary_Scope

It is not a problem @chocolatefrog, I'm glad I could help!

Yes it is helpful to explain in the box about your daughter's hesitancy to use the wheelchair at school as it helps the assessors paint a complete picture of your daughters mobility challenges.

This is just an example of how you could phrase it in the box based on what you have mentioned...

"My daughter experiences significant pain in her lower limbs and requires a wheelchair which is written in her EHCP. Even though she uses her wheelchair readily outside of school and away from her friends, she is reluctant to use it at school due to feeling self-conscious. However, this results in her being tired and in pain during the school day. We are working with the school to address this issue and encourage her to use the wheelchair when needed."

That example directly mentions the EHCP and highlights the medical need for the wheelchair while explaining why your daughter doesn't use it at school. This will hopefully address any possible confusion the assessor might have and make the reasons why she doesn’t use her wheelchair in school obvious to them.

It also shows the assessor that your daughter has ongoing need for support as she experiences the consequences from not using her wheelchair at school. Also, mentioning that you're working with the school shows you're actively trying to help the issue which can sometimes go in your favour with some assessors as it shows you are being proactive!

Hope that helped explain things a little more and hopefully makes the form filling process a little bit easier! 😀

chocolatefrog

That is so helpful, thank you @Mary_Scope It will definintely make it a bit easier for me. I've been doing it for 2 full weeks now and my brain is frazzled! Thanks again.

Mary_Scope

You're welcome @chocolatefrog!

I wish you and your daughter all of the best with the application😀