"Ehlers Danlos patient with partial dislocation"

In mid July 2025 I partially dislocated my knee. It popped out and then popped back in. Due to the pain I called the GP and they gave me a physiotherapy appointment for the following Tuesday.  They offered more pain relief but I declined as I am allergic to most painkillers apart from Nefopam and I already had this in the house.

The pain got so bad that I phoned NHS 24 on Saturday night and they advised someone from Whitehills would call me on Sunday morning to offer an appointment.  They did call but told me to go Arbroath Hospital despite this being 37 mins drive from home. Whitehills HCCC is only a 10 minute drive but I assumed they were too busy so accepted the appointment in Arbroath. 

The nurse that saw me apologised first us travelling to Arbroath as I should have been seen at Whitehills. They examined me but could only offer crutches as I couldn't take stronger pain relief. The nurse then said if I came back on Monday at 10am I could have an xray to ensure there was no bone injury and this would put me on the pathway to orthopaedics.  They and the community physio could then have a conversation about who should treat me going forward.  She said to keep the physio appointment on Tuesday and tell the physio I have had an xray and referred to orthopaedics. 

I was taught how to use the crutches properly and to continue to follow first aid measures with elevating the knee, ice packs and pain relief. The physiotherapist called me on Tuesday.  I advised I was looking for an exercise plan because I have HEDS and ince a subluxation takes place it can happen again and I would like to avoid this. The physio stated that usually people who have a subluxation never have one again. I advised research of HEDS shows it can happen frequently once you experience subluxation and physio to strengthen the muscles should be the treatment for prevention.  The Physio disagreed and stated orthopaedics would take on my case anyway so they closed my referral. 

This week I received a letter from orthopaedics stating they checked my xray and there is no bony injury, it is impossible to tell if you had a dislocation or not however we would be guided by your description of your symptoms on this. They advised to continue with the community physiotherapists, who have already closed my referral as they said orthopaedics would help me.

My only alternative is to go private because the community physiotherapists do not know enough about Ehlers Danlos to help me. This is not the first time I have experienced false information from this physiotherapy team. In my prior appointment with them the physio told me HEDS is not a connective tissue disorder it just affects the muscles. I advised her that her information is incorrect as HEDS affects everything including skin, organs, muscles and joints. My joints are unstable and I need to strengthen the muscles to support the slack, unstable joints. I was asking for help with back pain. She sent me an exercise plan through email with no follow up.

The exercises just increased my pain and I didn't call them back as their training in my condition is severely lacking. No one in the NHS seems to be trained for HEDS. My GP has no experience,  physiotherapists are ill informed, rheumatology and orthopaedics won't help. There are no specialist consultants for this condition in Scotland. 

I feel medically gas lighted as im told im wrong when I try to explain my condition.  I am a member of HMSA and the Ehlers Danlos society.  I also use the Zebra Club app. These organisations are experts in Hypermobile Ehlers Danlos Syndrome (HEDS) so I get my information from them. HMSA also offer medical staff from the NHS free training. They have a tool box for GP's and I have pointed thus out to my surgery but I still do not get the treatment I am seeking. INHS Tayside need to invest in training for this condition or use the free training on offer. I can't afford to go private everytime I injure myself. It's not ok to justify not treating me by saying the condition is rare because it isn't rare anymore. Diagnosis has increased in the last 5 years. 

I can't fault the treatment I received at Arbroath Infirmary.  The nurses and the staff who x-rayed me were excellent it is the aftercare which has not been great.