"Joint Hypermobility Syndrome JHMS -..."

About: Freeman Hospital

Referred to Dept. after finding research online that connected many of my conditions to my JHMS.

Sent this research paper ahead of app. recorded delivery & have proof of delivery, yet Consultant did not receive!

I arrived with 15 mins to spare.

Entered at main enterance beside multi-story carpark.

No signposts to MusculoSkeletal Dept, despite v lengthy walk!

Had to ask 4 different people for directions. Arrived in pain & with severe fatigue/confusion/brain fog, due to my condition.

Got to Dept reception with time to spare, but lengthy queue.

Was made to sit in 1 waiting room for 5 mins, then another for further 5 mins, then called in & literally reprimanded by Consultant for lateness! Tried to explain I wasn't late, but cut me off, stating, 'Do you want to use your app time to discuss this, or to discuss your health?'!

Was disgusted with attitude.

They asked why I was late! Downhill from there..

Was told my letter & paper had not been received!

I sent email checking this 2days before appointment.

Secretary could have told me & I could have prepared another & had my symptom list ready! My email had been received, with a link to my research paper, so at least that was something!

Tried my best to recall all my different symptoms/conditions. Consultant asked me which was most problematic at the mo. Explained sacroiliac joint was worse than ever last few wks, causing sleep issues. Hips & jaw partially or fully dislocating regularly, loss of feeling in limbs, painful extensions of hands & forearms, & heart doing funny things, including blackouts. No examination done. No interest shown. Was clear I was an inconvenience. Checked I had some hypermobility in knees, hands & arms, which was already confirmed in my diagnosis in '93!

Refused referral to consultant who specialises in JHMS/EDS3, was told 89% of rheumatologists don't believe JHMS to be connected to EDS anyway, & can't refer to the clinic in London for Hypermobility type EDSl. Checked with Clinic directly, they said they receive referrals & would happily see me.

Consultant said I needed to do more exercise to strengthen my muscles! No referral to physio, as they'd just tell me to do exercise! I am a dancer & regular gym goer, until this worst bout of fatigue, pain & blackouts! My muscles are in good condition!

Said GP would have to refer me to pain clinic (GP said Consultant would do that!). Discharged me there & then! Came away in tears & so disheartened.

Totally humiliated!

I was so hopeful about this appointment & being taken seriously about my condition, for once.

Back when I was diagnosed there was little info on it, but now there are all sorts of treatments possible, but seemingly I'm not worth referring to someone who knows my condition inside out & understands me, nor am I worth treating with respect.

Worst Consultant I've seen in years.

Whole hospital experience terrible.

Story from NHS Choices

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Response from Freeman Hospital

Thank you for taking the time to leave your feedback regarding your experiences, please accept our sincerest apologies for the issues you have encountered with your treatment within Musculoskeletal Services, Freeman Hospital.

We would like to address your specific concerns and would be grateful if you would contact the Directorate Manager to discuss this, as we hope to be able to investigate this further. Please contact Phil Powell, Musculoskeletal Services Directorate Manager on 0191 2336161 ext. 37885.

Alternatively if you would like to have our Patient Relations Department carry out the investigation on your behalf and provide you with a formal response, you can contact them on patient.relations@nuth.nhs.uk with these details and your contact information and an investigation officer will be in contact to discuss your issues.

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