"Unorganised appointment"

About: St Mary's Hospital

(as the patient),

I had a follow up appointment by a consultant who still wants to monitor me on a regular basis concerning a hip replacement and recent issues with a knee. Earlier in the year my consultant had referred me to a Rheumatologist to which I went to in February, but still wanted me to come back to be monitored.

The appointment times were running late (used to this now) and went in to the consulting room. Consultant polite asked how I was etc and rummaged through my notes (admittedly large) and said they had seen a letter from the rheumatologist somewhere but it looked like it hadn't been filed in my file so couldn't find it. The appointment and blood tests were done in February so some weeks ago now. I was told that they 'seemed to remember' that the Rheumatologist had started me on some medication. I explained I had tried to chase the blood test results, had no feedback and had not been back to discuss anything like that etc. The consultant then gave me the name of someone to chase via the switchboard for them. I then asked them if they could look at the blood test results which they did. They looked at the screen and said something was a little off normal but wasn't sure what that blood test result was for? ! ? !

I was asked how my knee was after the keyhole surgery in 2015 was and I said it was no better, still hot, still swollen and restricting me in my work. Explain again it was my hands and both knees sometimes. I was told with complicated names to describe what they think was happening with my bones,  didn't want to do further knee surgery as it would be better to wait for an appointment with the Rheumatologist. I was then asked about my hip (which I have now been referred to Southampton for as wasn't happy with care at St Mary's) I said it wasn't great so a six month appointment was made including an x-ray of my hip.

On arriving home I opened two letters which had arrived in two separate envelopes informing me I had an appointment with the Rheumatologist in May, both the SAME letter, complete duplicates. I also had another letter (in a third separate envelope) which was a letter from the rheumatologist to say that all the blood test results were negative and therefore he wouldn't be putting me on any medication but an appointment would be made to discuss what was in the letter and possible action for my knee but was now sure it wasn't RA related.

So to me it seems that my consultant had not read the letter properly, the letter he saw wasn't where it should be to hand for my appointment, and my results weren't interpreted correctly. I feel every time I go to expect results or for things to be moved on, or for a diagnoses to be made and possible medical help, things are disorganised, results aren't ready for the appointment I attend, access to them is not possible (this happened last May too when anticipating MRI results) or feel as though I am just being fobbed off and no one really wants to make a diagnoses or pass me onto someone who possibly could.

I have CONSTANT pain in my joints and have done for over two years (mainly knees, hips and hands), swelling, stiffness when active and also whilst sitting but just seem to be getting no where.

I appreciate things have got to be ruled out but don't feel any commitment is being made for it to be resolved or diagnosed properly, information or results are vague and non conclusive if in the right place at all to be read an interpreted. I have been told I am 'an unusual case' on several occasions but don't get further than that and times between each appointment are months away from each other.

I will be bring this up at my next appointment with the Rheumatologist but also wanted to make my feeling known via here. I'm only in my early 40s but feel like I am in an 80yr olds body and it is frustrating and also so VERY draining. I'm a single parent, self employed with what should be a very physically active role (which I am struggling to do) and am finding it very hard to plan.

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Response from Vanessa Flower, Patient Experience Lead, Isle of Wight NHS Trust

picture of Vanessa Flower

Dear Little Legs

I am really sorry to read of the distressing time you are having, and it appears that poor communication and disorganisation are not helping you to get the care and treatment you need. Unfortunately it is difficult for us to respond to individual complaints on this site, so if you have not already done so I would ask you contact the Trusts PALS team on 534850 so that this can be looked into for you.

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