"Joint Hypermobility / Ehlers Danlos"

About: Aberdeen Royal Infirmary / Rheumatology (Joint conditions)

(as the patient),

After a year of debilitating pain and my GP dismissing my condition as being cause by anxiety, I finally managed to get a grudging referral to rheumatology. I eventually received an appointment only to be called and informed the day before that the doctor was off sick and that my appointment would be postponed by around a month. Soul destroying as that was, the lady who called couldn’t have apologised more and these things do happen.

My consultation was with Dr Pathan who I am extremely impressed with. Six days after my consultation I had been fitted into a cancellation slot for an MRI (Susan was just lovely) and a week after that I got an appointment with an OT (Fiona) and physiotherapist (Amy). Dr Pathan called me personally on the Monday morning to discuss my MRI results and again on the Friday afternoon to let me know he’d had them double checked by another musculoskeletal doctor and to re-assure me that he was going to write to my GP and copy in other relevant teams. I saw Fiona, and Amy in two hour long slots that ran on from each other. These are the first professionals I’ve seen who 100% understand and are genuinely kind about my illness. They understood my pain and struggles without me feeling like I had to “prove it” and they genuinely wanted to help.

I cannot explain the relief in finding a consultant and team of professionals who take me seriously when others haven’t. Dr Pathan straight away knew what was wrong and sprung into action, knowing how painful this condition is and that I have no relief due to drug allergies. Not often do you find a consultant who will make the effort to call you on a Monday morning and a Friday afternoon! Every member of staff I have encountered at Rheumatology have been lovely and knowing that I will be looked after is the biggest weight ever to be lifted off of my abnormally mobile shoulders!

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Responses

Response from Linda Oldroyd, Nurse Consultant Patient Safety and Experience, NHS Grampian

Dear Patient

There can be no more worrying scenario than being unwell and not knowing what is wrong with you. It must have been very difficult for you waiting to get a referral to the appropriate speciality. It sound s as if a great team in Rheumatology have worked together to allay your fears and get you the help that you needed in a timely and efficient manner. The team clearly has a very person--centred approach to care and they have all taken account of what mattered most to you.

Sometime it can take time to work through the system to reach the people who can give you the help that you need but it is great to hear that when you saw the right people you got the right care.

Many thanks for taking the time to share your story on Patient Opinion. We will make sure that the Rheumatology staff are made aware of your kind words.

If you have any concerns about delayed diagnosis or referral please get in touch with your GP directly or if you prefer you can contact me on 01343 567900 or email me at loldoryd@mnhs.net. Also if you want to make a complaint you can email nhsgrampian.feedback@nhs.net

In the meantime I wish well with your condition and treatment and thank you again for your feedback.

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