I’m seriously thinking about taking my son to a hypermobility EDS specialist who can diagnose him, will he still have to be referred by his GP ? Also how do I get the MRI results for private specialist to look at .
I remember some of you have gone down this route so hopefully will be able to guide us
Thanks
You’ll need a gp referral for an appointment privately. If you don’t know which one yet they can do a generic one, or specific if you do. I am not sure about the MRI it depends who did it - when you have the referral you can ask the private hospital how they retrieve it. Pretty sure they request it (they don’t have direct access to NHS records).
I would consider what help you’re hoping for, a diagnosis of EDS can cause more problems (health insurance etc) than it solves; I suppose it depends on what treatable problems he’s having. I assume if you’re seeking help he’s suffering pretty badly. Good luck x
You are entitled to written reports of all tests done on the NHS, just ask your GP receptionist, or your GP when you ask for the referral. That would include those of your children. As long as your GP has seen them there should be no problem. Some charge a nominal admin fee, personally I have never had that. Best thing I ever did was go private, I was diagnosed at 54, wish I had known sooner but I manage my symptoms better and make sure I rest up more. I also had physio at the hypermobility unit and although that was also private it was really worth it. I have more muscle now than ever, she taught me how to manage my autonomic dysfunction which reduced my muscular pain. Good luck
Just to add GPs can no longer charge routinely for us to see our records under the GDPR. They can charge in certain circumstances, for instance if it is a second request within a short time period or if nothing has change since the first request.
Dear Anne2018
I am guessing you would want the Consultant to be able to view the original MRI scan - not just see the results. If you want the original photos you ring up the hospital and ask for the records department. Then ask them to send you the form for applying for medical records. If you want ALL the records I think there is a maximum cost of £50. (EDIT - as mentioned above there may now no longer be a charge to get the notes. Sorry I have not read the new rules regarding the charges.) The MRI actual photos can be put onto a DVD and they may charge you a small amount for that. This will be worth it so that you can let the Private consultant see the actual photos. Personally I would not be relying on just getting the results because the results will be the opinion of either the radiologist or the existing NHS Consultant. They may or may not have experience in hypermobility.
If you just want the results of the MRI scan the quickest way is to have an appointment with the GP and just ask them to print off a copy of the results.
Everyone has a legal right under the Data Protection Act 2018 to see all medical notes, reports and test results.
I hope this will help you with the notes/test results side of things.
Link to "How to access your Health records":
nhs.uk/using-the-nhs/about-...
Link to Data Protection Act 2018 (very long and complex):
Just a thought Anne2018
You may even find someone has diagnosed your son already but just not passed the diagnosis on to you. This frequently happens. There is a lot to consider before getting a child diagnosed: life assurance, travel insurance, getting a job, mortgage insurance, etc. So consider things carefully. You will need to weigh up your son's state of health and decide.
Personally I think it is extremely helpful to have a CORRECT diagnosis. I went privately to get my diagnosis when I was 54. I had been trying to get a diagnosis since I was 15 years old and it was a massive relief to me to eventually have the diagnosis confirmed. I feel until someone knows exactly what condition they have that they cannot manage their symptoms. I asked for my notes when I was 54 and I discovered that I had previously been diagnosed at least by age 31. I suspect that I was diagnosed at age 13. I had to take up studying all things medical so that I could diagnose myself. By the time I was 18 I knew that I had a Connective Tissue Disorder. It just took me most of my life fighting the NHS to obtain an official and accurate diagnosis. I have damages to almost every part of my body because of all the completely unnecessary tests, operations, etc.
For children it can be crucial to have an official diagnosis so that they can access any support they may need. For instance writing may be very difficult or take longer so they may need extra time to allow them to complete exams, etc. They may need to complete some exams on a computer for instance.
Do make sure you choose carefully and make sure you get someone who is an expert in Hypermobility Syndrome and other Connective Tissue Disorders as there are other conditions that may need to be ruled out. I would suggest you contact the Hypermobility Support Group or EDS UK. They should be able to provide you with a few names of the top Consultants. If you are paying you need to make sure you get the best! Do NOT let your GP persuade you to see "any old" Rheumatologist. There is little point in seeing someone who is not an expert in the correct field. A lot of damage can be avoided if people are aware of their diagnosis.
Here is the link for EDS UK:
Here is the link for Hypermobility Syndrome UK:
I hope all goes well for your family. Xx
To retrieve MRI put An application for a NHS Data Access Request, the procedure is online
Thank you all for the really good advice, can’t say I would have known how to start off the process without it
If you’re going to do this then ask for Dr Hakim in London. The London Clinic is the best by a Country mile! I actually rang them myself, look them up online Good luck x
Thank you, it’s so helpful to get all your input
Disappointed with Rheumatology Consultant
Advice for a Hypermobility sufferer 
20 years old and Am having a horrible time 
Headaches and dry nose