Ehlers-Danlos Support UK
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MRI

On deciding that my son will be visiting a private EDS Specialist my son contacted our GP for a referral to the specialist. GP gave his approval and said that all we have to fo is phone for an appointment. My son then asked for our GP to check the latest MRI done as the EDS specialist would need access. The GP tried to access the MRI and access was denied to GP, this right ? as the GP was confused why he could access it.

I am thinking of writing to PALS as these 3 MRI will heed to be seen by the specialist to be able to diagnose...has anyone else had this problem ?

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Hi. My son and I were both diagnosed by a private specialist without our MRI scans or other scans done previously on the nhs. I had asked for all results prior to visiting the private specialist, but my GP told me that the hospital and GP clinic are separate. The GP was only able to access the results that had been sent to them by the consultants who had ordered the scans, and apparently they don't all bother to send them😬

If you contact the consultants secretary and ask them for the results you need, hopefully you should be able to get them.. I know how frustrating it is. Its made difficult for us at a time when we need support..But from my experiences this is often how it can be, and we have to chase the things we need.. Some of the information I have needed has even disappeared, and no one knows where!.. I make a habit now of asking the consultants I see for a letter to be sent direct to me, along with all test results. I ring the secretary, more than once or twice if necessary, to make sure they send them.

I hope you get everything you need. PALS will be able to help you if you can't get them..Good luck and Best wishes to you and your son xx

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Oh thank you, it was strange as the other two MRI were available to the GP.

At least you have have similar experiences, I will contact the secretary of the rheumatologist and request them through her.

Thank you for your help, I never realised how difficult it would to get him diagnosed, we were fobbed off in the last appointment with the rheumatologist without any answers, you would think if they didn’t know they would say rather than make the patient feel as though they are making a fuss about nothing ...

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I'm happy to try and help, I know what its like. I can relate to being fobbed off and made to feel that my symptoms were all in my head, despite obvious physical disabilities that were present. The Doctors I saw just didn't have the answers. It was a ten+ year battle. So I did my own research, and realised going private to see an eds specialist was the only way. Fortunately it was worth it..

I didn't want my son to struggle for years without answers as I had, and he too got diagnosed at age 21 after suffering and having a previous ME diagnosis since age 7.. So I know how difficult it can be, as do most of us.. Hopefully as more frontline Doctors become knowledgeable in the signs and symptoms of eds things will start to change🤞 Best wishes xx

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Hello Anne

I requested my MRI scans direct from the hospital where the scans were carried out. They were provided to me on a DVD. I don't think they even made me pay for them or it may have cost me £5. It is too long ago for me to remember.

I didn't need them for the EDS Private Consultant though. It was the EDS Consultant who "requested" for the scans to be done on the NHS which was AFTER he had diagnosed me with EDS. People with EDS really need upright scans done as opposed to scans done when lying down.

I am pleased you are able to see someone privately. It is much quicker and far less messing around.

Good luck from

Twinkling Star

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Often things like scans are done by private companies on behalf of the NHS. They all use different system, have different routines for sharing and so on. GPs often moan that they don't get to actually see the results, only the report, which is no good when patients are referred on, and often it means have another scan if they can't get the original ones released, and this isn't just for MRIs it can be for x-rays, and ultrasound too.

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You can request copies of all medical records and scans each NHS trust has a department dealing with such requests you have to complete data protection forms and some charge they are usually sent out on CD including the reports. As far as private hospitals are concerned they too allow copies of MRI's and reports if you have been to the private hospital and had scans at there premises, the last time, last year, I applied for a Dexa bone scan that was requested by a private consultant and the Dexa bone scan had to be carried out a a NHS hospital the private hospital could not get me a copy of the scan I had to apply through the NHS and pay for this.

As far as GP's being able to access NHS hospital scans and records this is only possible if they have full access clearance, passwords, my last CT scan, last December, was not able to be accessed by one GP but she said her colleague still had full access because she had not been too long away from working in the hospital system apposed to GP system but they could not request a copy of the CT for me because they had not requested it... many GP's are not able to interpret MRI's or other imaging they rely on the written findings.

If your NHS consultant works in private practice too them they have the advantage of accessing both sets of records otherwise the NHS do not have access the private hospital records and vice versa.

My advice is that on every single occasion whether NHS or private is get copies of your records especially Scans, X-ray etc this way all these people have no excuse, I have copies of all my major incidents and yes its a mountain of stuff but this has been access many times by other consultants and saved much time and money. In December I was admitted as an emergency they did a CT scan and diagnosed me with an hidden (occult) inguinal hernia, it had been playing up for years and never investigated or diagnosed until then, anyway called for copy of NHS CT scan (£10) and decided I could not wait in bed until the NHS could operate so travelled to the British hernia hospital at Lindo wing at St Mary in London, when I saw the consultant there he could not locate the hidden inguinal hernia on examination just like all the other's thankfully for me I had my CD of the CT scan with me otherwise he told me he would not have believed I had a hernia and he would not have operated the following morning, he told me he'd been doing hundreds of hernia operations for decades and never not been able to find a hernia, so I was really very pleased I had got a copy of the CT scan from the NHS because the consultant did not have access to the Scottish NHS CT Scan which is where I live at the moment.

Good luck.

Gillian

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Oh thank you, that is very helpful. I will phone up the hospital that done all the scans and request reports and copies of all

How much do they cost on average ?

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If you had them done privately I have had them free and other times had to pay £10 depends which private hospital. If the NHS I have paid £10 for each seperate request, maybe if you are requesting more than one occasion they may just charge you for the one request of an application for copies of the hospital records, you need to complete a form to cover data protection and you will need to provide hospital, dates, ward/clinic/department, consultant and make sure you request details on CD to include the scans and the written reports on each scan. I can see from the form I completed last that I could have multiple requests on the same application. The department that I was in contact for the last scan was called the "Information Governance Team" might be called something else where you are.

On reading the one NHS hospitals summary it says:

"Fees payable: for access to information written more than 40 days before the date of your application an initial fee of £10 will be charged. Please include fee with application. If you wish to receive copies of your information a further fee of £40 will be charged, if these total more than 20 pages. However if you wish to view the records only, no further fee will be charged."

Hope this helps.

Gillian

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That's all helpful info. I don't have any copies of the actual scans. I only managed to get some of the reports. These were enough for my private eds specialist, but I know I could do with them when going to other consultants about other issues, and so could my son.. I know you can view medical records by registering to do so at GP practice, but this is only what my GP practice have on file, and it appears they never got everything. I'd like my scans from the hospital, but dates and consultant names escape me. At least by looking at my records it will hopefully have those details, and then I'll be able to chase up the rest. Thank you🙂👍xxx

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I would contact the hospital MRI department you went to and see if they are willing to provide the date for you, I would also ask the GP /Dr surgery too. You can also speak to the department that manages the requests for copy records/scans and see if they are happy to have a vague date. Please remember the Dr /GP surgery can only provide access to your records that they hold and the NHS hospital can only supply access of your own records for you only and not records from the GP.

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Thank you, that really does help, have already got mri reports from the first two so maybe just the report & copy of last scan which seems to be the problem one that he could not advice on ☺️

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Have a our registered online at your surgery?

I think all surgeries have to offer this service

As well as the basic things like making appointments and requesting meds you can request to see test results

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I don’t think he has, I’ll get him to do that, thanks for the tip 🤗

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Because my son is claiming benefits at the moment we keep all his appointment letters, and the reports that come after a visit, I learnt the hard way when I had lost a couple how difficult it was to remember the name & date of the appointment.

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