"Consultant came across as quite dismissive"

About: Lincoln County Hospital / Orthotics

(as a parent/guardian),

My son (& myself) have hEDS -Hypermobility Ehlers Danlos Syndrome -  which is a connective tissue disorder. It means my son can dislocate joints & gets pain in his joints. 

We were sent to orthotics at LCH to help with his knee dislocating. The first consultant we saw was incredibly good at knowing a fair bit about Ehlers Danlos Syndrome & the issues that can arise from having the condition. They looked at my son's knees, ankles, feet & hips & could see there was a problem. They rectified those problems with some orthotics. These were a game changer for him.

We've been back twice because my son's grown incredibly quickly, but the last time we were there we saw a new consultant. This consultant was 15 minutes late to the appointment, hadn't read my son's notes, & seemed to have no knowledge of hEDS.

It took me being really firm with the consultant to explain why we were there & what we needed from them. His problem is, the orthotics this time aren't helping & he's in a lot of pain. I feel reluctant to return to this consultant because they came across as quite dismissive. 

My son can't currently do what he normally does because as soon as he starts walking, his ankles, knees & hips cause him agonising, burning pain. 

I've contacted my GP to find out what I can do. 

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Responses

Response from Rosie Turner, Site Lead Therapist & Operational Lead for Orthotics, United Lincolnshire Hospitals NHS Trust 14 months ago
Rosie Turner
Site Lead Therapist & Operational Lead for Orthotics,
United Lincolnshire Hospitals NHS Trust
Submitted on 07/08/2023 at 07:49
Published on Care Opinion at 07:49


Dear volanstn86

I’m sorry to hear you had a negative experience at your last appointment with orthotics, I would like to look into this further and see what we could have done differently in this situation. I’d like to arrange another orthotics appointment for your son if you feel further orthotics are required, unfortunately we do not have your contact details so please could you contact me to arrange this and discuss what happened further – rosie.turner@ulh.nhs.uk

Rosie Turner

Site Lead Therapist Grantham & District Hospital and Operational Lead for Orthotics

Many thanks,

Rosie

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Update posted by volanstn86 (a parent/guardian)

We do have another appointment soon because my child is suffering & it needs looking at.

It would help if consultants researched Ehlers Danlos Syndrome & read my son's notes before seeing him. He looks normal, but he isn't.

Thank you for responding.

Response from Rosie Turner, Site Lead Therapist & Operational Lead for Orthotics, United Lincolnshire Hospitals NHS Trust 14 months ago
Rosie Turner
Site Lead Therapist & Operational Lead for Orthotics,
United Lincolnshire Hospitals NHS Trust
Submitted on 07/08/2023 at 10:43
Published on Care Opinion at 10:43


Dear volanstn86

I’m pleased to hear you have another appointment. I will bring up this issue with the whole service and ask our clinical lead to look into whether more training is needed in Ehler Danlos Syndrome. I would also like to speak to the orthotist you will be seeing ahead of this appointment so they are aware of your son’s history – please could you contact me directly at rosie.turner@ulh.nhs.uk to let me know your son’s name and when your appointment is to enable me to do this?

Many thanks,

Rosie

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