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Physiotherapy has been an important part of our lives since Thomas was born nearly 5 years ago.

He has severe dystonic cerebral palsy, so it is essential not just for building new skills but for managing his condition and preventing it delaying further issues that often occur as a result of being severely dystonic and non-mobile.

If you ask around, you’ll soon realise that, much like most healthcare, physio input is very much a post code lottery, and for the most part we felt like we’d won the jackpot!

Thomas was very lucky to be allocated to a passionate and dedicated physiotherapist as soon as he was discharged from NICU and for the most part he has seen her fortnightly during term time ever since.

Last year his named physio unfortunately had a period of long-term sick leave leaving Thomas without regular input for around 6 months before he was allocated a new physio. We quickly noticed a difference in his quality of life, as he began to experience more periods of painful dystonic spasms, and during this period his hips started to migrate more significantly.

As a result, we began to consider private therapy options and on the recommendation of a good friend signed Thomas up for a week of intensive Cuevas Medek Exercise (CME).

It was an amazing experience.

The therapist came from New York and was exceptionally skilled at handling Thomas and pushing him to do things that he’s never done before. For the most part, in typical Thomas fashion, he loved the therapy, laughing through his sessions. By the end of the week we could see a noticeable improvement in his trunk control and enthusiasm to be sitting and standing with support.

We loved it so much that we went for another week a few months later. It was expensive though, and we needed help from our friends, family and local community to raise funds to pay for it. After seeing the improvements though we were determined to access as much as we could.

We signed up for the next session due to take place in May this year and were happy to see the return of his original therapist who after seeing the improvements was quick to recommend a block of weekly therapy to build on the skills he’d learnt.

And then, of course, covid-19.

All therapy ceased, the block in May was cancelled and we bunkered down at home to keep Thomas safe. 6 months later and we are still uncertain when regular therapy will resume.

Travel restrictions, and the awful situation with Covid in America means there are no plans for therapists to travel in the near future and our local physio department have not updated their position on regular face to face sessions since March.

As before, we are seeing the impact on Thomas as he starts to lose skills and experiences more pain. It’s hard to understand the rationale behind the restrictions given that physiotherapy is an essential healthcare service for a childlike Thomas and I wonder whether this is a common experience around the country?

I’d love to hear your experiences!

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Nicola Sheldon

Meet Our Blogger

I'm Nicola, mama to three awesome boys. We live in Thatcham, Berkshire with my husband and dad extraordinaire Chris along with our dog Percy and cat Fudge. I care for my second son Thomas full time and in my spare time volunteer for local organisations supporting women and babies.

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