UK ADR Site is formed

[Alastair]

Folks,
I don't know if I'm going to get into trouble with Harrison by posting this. As you know, I have been a member here since its formation over four years ago, and done most of the FAQs and helped loads of people worldwide.

I have founded a new ADR site for UK people and people in the United Kingdom including Ireland and Scotland. Harrison is totally aware of the UK board It is here: --

http://www.adrsupportuk.com/

All the information there is much more relevant to UK patients.

We have only been formed about three weeks, but I'm hoping that the members here will help to point UK people to us, rather than have them floundering with things like the USA health insurance, and doctors who are not relevant to the UK at all.
Best,
Alastair

[rosedee]

Hi Alastair,

I think the UK site is a great idea and I have been visiting it regularly since it was started in March. Obviously there are some issues that are specific to different countries, such as private/public medicine, legislation, insurance, knowledge of consultants, systems, etc.etc.

BUt, at the same time, there are many - I would say the majority - of issues related to spinal problems/treatments/surgeries that are common across geographical boundaries. What is most important for me is being able to access good quality knowledge bases - academic, medical and experiential - that can help me increase my understanding and knowledge, in order to make the most informed decisions about what is the most appropriate course of action to take.

I visit 4 or 5 spine-related site most days in order to be as informed as possible, as well as get more general support. This site here is one of the best I have found, in terms of the quality of information provided and knowledge of individual members, including experience of procedures.

The potential number of people in the UK who have knowledge about and experience of ADR and spinal problems in general is always going to be very small compared to internationally. As such, for me, adrsupportuk is an additional source of knowledge/support that is particularly relevant for UK specific issues, rather than an alternative to forums such as this one. I think it would be an enormous loss for everyone to have country-segregated sites.

rosedee

[Alastair]

Hi Rosedee,
I think what you have to realise is that a lot of the procedures that are done in other countries are not done or approved by the UK authorities known as NICE -- -- -- the National Institute for Clinical Excellence, which controls what all doctors are able to do in the UK.

I totally agree that knowledge should have no boundaries, nationwide,and people should join whatever helps them worldwide, but there's a huge amount of information here about American insurance systems, American surgeons, and procedures which are nothing to do with the UK at all, and are not helpful to UK patients. I am hoping that the UK site will be a strong focus and more informative on the UK surgeons and procedures.
Best,
Alastair

[rosedee]

Hi again Alastair,

NICE is about guidelines and recommendations - just because a procedure is not recommended by NICE, it does NOT mean that it can not be obtained in the UK - both on the NHS and privately. I think this shows why it is so important to have knowledge of treatments/procedures that are not routinely done in the UK - particularly for people with complicated histories and conditions, it may well be that the less common procedures are exactly what are necessary. Only knowing the usual options in the UK narrows people's choices. NICE's remit is as much to do with cost-effectiveness as clinical effectiveness. This is very different from best choice for clinical effectiveness in individual cases.

You obviously know only too well that ADR is neither a widely-used procedure in the UK, nor are there a great many surgeons with a lot of experience and expertise (which is not to ignore the excellent ones that there are). That is why you, and others from the UK, have gone to Germany to have your surgeries done. Given the problems with our health system in the UK, more and more people go abroad for treatment (So called "health tourists"); I certainly want to know what is the best treatment for my spinal problems - nor merely the best treatment I can get in the UK.

The above is not to take away from the need for information about UK-specific isses. What I've written shows how important it is to be fully aware of them. Obviously most of us in the UK have little interest in USA insurance companies per se, but everything else is certainly of interest to me. So as I see it the UK board is an additional resource, not a replacement for this site.

[Alastair]

Rosedee,
At no time did I say the UK ADR board WAS a substitute for this board, or that it was greater or better than this board. I was merely trying to make the UK members here aware of it, as much of its contents and local issues are more relevent to UK people.
Alastair

[Lyndsay]

Hi Rose

As the founder/builder of the new ADR UK site, with many thanks to Alastairs input, I just want to say that the board has been founded as an additional resource for UK patients. Many patients including myself plus the UK surgeons were calling for a UK board hence its build.

I agree that it is important for patients to do their research & go with whichever surgeon & country they feel most comfortable with.

I also agree that ADR is still very new & not just in the UK. The aim of the UK board is to be an additional resource with up to date information on surgeons, hospitals etc within the UK although you'll see that there are still links to surgeons in other countries & of course a link to this very informative board that has the advantage of being more established with a bigger membership base because of that. I'm sure in time the UK board will become just as established.

I'm sure Alastair will agree that we don't at anytime want there to be an "us & them" when it comes to the board as that will achieve nothing.

I hope this all makes some sort of sense as I'm completely loaded on Morphine at the moment!!

All the best

[rosedee]

Hi Lyndsay,

From one spaced out morphine user to another your post makes perfect sense!

As you know, I welcomed the UK site when it started, as I saw it (and still do) as an important and very useful resource. I think my posts on this thread by and large echo what you're saying. I am concerned, though, that information presented as fact should be accurate and distinguished from opinions/interpretations.

I'd be interested to know who are the UK surgeons who were calling for a UK board?

All good wishes to you here and there!

rosedee

[Justin]

I am concerned, though, that information presented as fact should be accurate and distinguished from opinions/interpretations.

Rosedee,

FYI the information on this board should not be considered "fact" or even medical advice. It is a place for PATIENTS (not medical professionals) to share their experiences with ADR.

This forum should help guide your journey, but should not substitute the advice of a medical professional.

Justin

[Harrison]

Thank you all, for contributing to this interesting topic! I have much to say, but will hold off for now -- as many of you have raised such valid points already.

One point for me to continue with at a later date -- it's VERY important that this site continues to be INTERNATIONAL in scope; in terms of the members' posts, articles and of course discussions. More soon.

[ans]

More thank once I've told pts. from the UK to check this board out and look up Alistair for in-country advice.

ans