The story of Rosie's glasses

Why oh why can things never be easy or straightforward when it comes to Roslyn's care? If you have been following the blog you may have seen a few of the difficulties we have faced along the past few months and the story of her glasses is just going to be another difficulty to add to that list. But here is hoping this story helps even just one family out there with knowing what they are entitled to. 

Lets start with a comparison between the glasses we were originally given (red pair) and the glasses we had to fight for (pink pair):

And now the story behind the glasses and how we got form the unsuitable pair to a pair that meets her needs:

After Roslyn's eye test we were ushered into the opticians room within Broomfield pediatric eye clinic as we were told we better just get it from there as baby glasses are not easy to find with high street opticians. So we went with the professionals advice, keen to get things moving with her glasses ordered. 

The woman in the optician side room had some frames laid out on a table. She held up the smallest pair she had with her and said that was too big. She then got up her ipad and showed us the screen to look at the colours for the smallest pair their store offered. (Didn't have them with her to measure or see how it fit Rosie). 

2 weeks later her glasses came. I was super excited to finally get them and allow Rosie the see clearly so I put them on. 

She did look super cute in them but as the excitement about them arriving faded I started to notice how unsuitable they were for her due to the following reasons:

1: The frame size was 39x14 which is too large for her.

2: The lenses were pushed up against her eyes and squished her eyelashes making it difficult for her to blink 

3: The band at the back was too large and wouldn't hold against her head so her glasses would not stay in place. If I tried to improvise and make it shorter there was bumps which couldn't be comfy for her when rolling. 

4: There was no comfort for the nose bridge holding the glasses and there was red sore patches left after wearing them for even a short amount of time. 

I researched baby glasses and reached out to other parents with babies who wear glasses and kept hearing about a brand called tomatoe glasses. 

I called the company back and they advised that they don't usually stock tomatoe glasses but could order and send us a pair (without measuring. They were going to order a 39x14 size in the tomatoe baby glasses as a like for like to this NHS standard pair) and said that they were private frame so we would need to pay the full cost. I felt unhappy with Roslyn not being measured up and the company was a long way away to get to. So I looked at the tomatoe site and saw there was a closer optician that stocked them so I arranged to take Roslyn there to get properly measured and ensure she had the right glasses. If I had to pay the private cost for her (which was 120 per pair!) then so be it. I however was planning on getting into the fight with the NHS that she needs specialty glasses funded as the pair we got provided with simply do not meet her needs. 

I went Bethell and Clark in Colchester and had an amazing experience.  Roslyn was measured and it was felt she would require the smallest pair offered which is 35x13 (the next size was 37 x 13 and then there is the 39x14 so this was 2 sizes smalle then what the other optician said was the smallest available...). And the other thing, this optician said that Roslyn WOULD have one pair funded via NHS as she needed these to meet her needs. They filled in all the forms and also looked into requirements for a funded 2nd pair.

Her glasses arrived 3 days later:

As you can see this pair is a lot lot lot more suitable and actually meets her needs. I am so glad that they came so fast and my little girl gets to see more clearly now but I disappointed the advice we were given by some professionals was subpar compared to the advice to others. I am disanointed what my daughter is entitled to isn't made clear and apparently there are discrepancies between opticians as to what they feel she should be entitled to (one was happy to claim this specialist pair on the NHS whereas the other wasn't).

We are now about to sail the boat of the fight for an entitlement to a 2nd pair. As Roslyn is a baby rolling around, about to crawl, bops toys against her face, pulls her ears and nose and now probably her glasses and all of those fun baby thing, I am expecting there to be frequent repairs needed. In fact parents of babies with glasses often tell me they always have one pair in for repairs while their baby wears the other pair and for this reason they have been funded 2 pairs of tomatoe glasses for their baby. Thankfully the very helpful optician at Bethell and Clark gave us the below information:

Next steps for us:

1. Find out who involved with Roslyn's care can be considered and act as a "Clinical Adviser".

2. Get the Clinical Adviser to apply for funding for a 2nd pair of glasses.

3. Wait for funding to be approved.

4. Order second pair via Bethell and Clark in Colchester.

5. By the time all this is done, Roslyn will likely have her eyesight measured again and may need another prescription so rinse and repeat!