Is this an appropriate way to communicate with patients?

Absolutely, one of the most informative medical information sites I have been fortunate enough to find. As someone diagnosed with MS and told my hand symptoms were MS related (which I have always disputed), my symptoms are now after two years being referred on for CTS investigations; assuming it is CTS, I only hope that in the years it has taken to convince my GP, I hope permanent disability has not resulted.

Although this is a little peripheral to the question I asked in starting this thread your case poses an interesting problem in that the symptoms of MS and CTS could conceivably be almost identical - though it would be an unusual presentation of MS. There have been previously documented cases of 'failed carpal tunnel surgery' subsequently turning out to be MS. If you do have an established diagnosis of MS then trying to work out whether you have CTS as well is an interesting challenge (MS patients are of course just as entitled to get CTS as any other member of the population). It would be interesting to see what you score on the symptom questionnaire here and then follow it up to see what the eventual diagnosis is. Good luck JB

I think this website is a really helpful development for the following reasons:

1) The website provides a great deal of relevant information about my condition in one place

2) The website provides a fast communication link to Dr Bland and the care team.

3) Most importantly, the site gives me a measure of control over my condition. Rather than being a passive consumer of treatment, I feel much more in control of my treatment, and the information available allows me to participate in decisions concerning my treatment.

I appreciate that management might be concered about patient confidentiality, but I decide what information to put up on the forum so confidentiality is under my control.

I am sure this approach is applicable to many other medical conditions such as diabetes, heart disease etc.

Well Done!

Winston Waller

Thankyou for the feedback - much appreciated JB

Your web pages are one of the most informative and reliable web pages about carpal tunnel I ever came across. The pages provides a lot of background information, even for the case if something is not going as planned or expected. That is very rare to find anywhere else. And your forum gives a really good opportunity to ask questions about CTS or look for answers, for the patients of the East Kent Hospital and for everyone else like myself who are looking for more information about CTS and maybe a solution for one's problem. I never ever expected to find a forum where I can get not only an answer, but a professional answer.
You have done a great job by setting up your web pages and this forum. And if one of the East Kent healthcare management is thinking different about this, I am more than happy to tell them, that this forum is reaches out to people all over the world and that this forum, but especially your dedication and help, increase the people's awareness of their hospitals.
Well done! You are great!
All the best for you!
Antje

As a new patient, and a nurse as well I am amazed at the ability to access support from a Consultant on line, instead of leaving messages with secretaries. What a privilege!!! I sincerely believe that other Consultants need to take a leaf out of Dr Blands' book. As patients having major surgery could have easy access to have questions answered about postoperative healing, A fantastic idea!!

Thankyou for the comment. As you have no doubt realised this site is somewhat experimental and it requires a great deal of IT integration to allow it to work this way so there are considerable obstacles to other consultants doing this at present. In particular I have to have access to my records for you at the same time I am reading your comments on the site as, believe it or not, I cannot remember all my patients! Putting all this together from outside the security of NHS-NET is tricky to say the least and even though a lot of thought has gone into data security and anonymity it is not perfect. It is fortunate that we are dealing with CTS - a condition which patients are generally happy to discuss with their friends in the pub.

In an ideal world I would like to see every NHS patient given a secure online medical record which they themselves had full access to and to which they themselves could give healthcare professionals full access as required. The main difficulties with this scheme are the fact that not everyone can use the web (especially not when acutely ill), and that there may on very rare occasions be things in your medical record which it would be better for you not to see. The summary care record being implemented now is the beginnings of an attempt to build such a system but I think the 'balance of power' in the system is wrong - too heavily skewed away from the patient and towards the NHS management - and if too many people opt out because of worries about access to their details it will be useless. JB

I am blown away by this website. It is so informative. It is wonderful to hear from other people in the same situation and even more wonderful that it is run by a Consultant. I work in a hospital and think that this is a great direction to go in. I'm not sure our Consultant would do this?! I don't think this is detremental to the NHS at all, I think it greatly enhances it and in fact, I hope you have been recognised and complimented by the Trust for your dedication and care. I for one can't thank you enough for this website.

I Think That this is a great website, very informative and really nice to be able to read and hear from other people in the same situation. Its absolutly Brilliant. As a new patient it really has made me feel more confident about where i can learn things about CTS and knowing you can have some sort of contact with the person who has diagnosed you really has put me at ease.

Hi, i think it's up to patients to choose whether they use a site like this and how much or how little information they put in the public domain. This site gives patients that choice and from the comments it's clearly highly valued. The other advantage to this site is that patients are more likely to let you know the long-term outcome of any investigations or treatment as it is much easier just to post a message which must be really valuable research.

I'm not entirely sure why you've drawn an angry response from the healthcare management team, but I personally needed to thank you so very much for ALL the information and help you have provided on this site. It has been invaluable.

I have been really surprised at this website as I know of no other like it. It really is informative and the help with my condition has been exemplary. I don't worry about other people reading my comments as using this site to be informed has helped me tremendously. What a good idea!

Thankyou all for the comments. I would very much appreciate any constructive suggestions for improvements. JB

I'd like to echo others that we are privileged to have access to such a valuable source of expert information and a direct means of communication with you via this site. I have a suggestion/query that is not a website improvement as such, but wondered if it is possible for your system to e-mail registered users if there is a response to a thread they have posted? This would remove the need to remember to log in to check for updates, which are mostly important messages from you.

Email back to registrants is quite high on the list of possible enhancements to the site - I need it to remind people to provide follow up information - but I agree that notification of a response to a discussion thread would be a good idea - perhaps with an option to turn it on or off. It hasn't been implemented yet because it will cost a fair amount and the site has no 'official' funding. JB

In the US we have patient privacy laws and notifications that are provided to us at what seems like every visit. We stand back while in line to pick up prescriptions or make a return appointment so as to provide the person ahead of us with privacy. Yet during a recent Emergency Room visit I was on a gurney with other waiting patients in a hallway for 3 hours and there was no privacy at all among the group of us--we soon came to know everything about each other except perhaps each others' names! Electronic records are more and more becoming the norm, with the result that physicians are often typing away at a computer while we're talking, and we have to hope they are able to listen and type at the same time. The good part is that if you stay within your network of providers, but have to see someone other than your primary doctor, there is electronic access to your records, including in my case surgical notes, drug allergies, health history, etc. which really helps with continuity of care.

I think the main issue with this site is one of control. I do not force people to use it and the degree of anonymity of postings in the forum and what people actually give away about themselves is under the patient's control not mine. I am very careful not to post information which I have been given in confidence in my replies to people where they have identified themselves to the rest of the world, for example by using a readily recognisable email address as their username. In your emergency room scenario, who was in control of what information became available to one patient about another one? - if the patients effectively had no control, than that would probably breach both UK and US privacy regulations. Those laws are sensible and none of us would want our personal information casually disseminated without our say so. The wider social argument is 'Should we be protecting people from willingly giving away their own personal information without thinking very much about the possible consequences?'. JB

I think the site is an excellent example of positive use of ICT: I see no confidentiality issue since it's up to me to choose what to disclose. It is not the only way to communicate with the clinic so excludes no-one. It de-mystifies the processes of diagnosis and treatment:: the ability to review the experiences of other patients in their own words (and to read JB's cogent responses) gives a realistic appreciation of the condition and of the possibilities and limitations of treatment. It 'shines a light' on the doctor/patient relationship in a way which, I suggest, is valuable to both. It would be interesting to know (I'm not suggesting that anyone in the team should divert time to this - perhaps the NHS has a section devoted to such analyses) what difference in terms of patient satisfaction and outcomes is delivered by use of this site. By the way, I don't think the comparison with Facebook is meaningful ... all the exchanges I have read have been non-trivial, on subject and, on the part of JB, perfectly professional.
I'm sure that this approach could be used with good effect in other areas of healthcare. My only reservation is to question the extent to which it may rely upon the dedication and communication skills of an individual.
I think EKHS should holding this site up as a beacon of progressive practice, showing the way ahead for improved patient engagement and understanding - and, according to my experience, for efficient delivery of healthcare.

The content here is 'on-topic' because I censor it fairly rigorously. We have had problems with spammers posting adverts - mostly as you might expect for dubious and entirely irrelevant websites - but also one or two advertising commercial things relating to CTS.

I agree entirely about the issue of how much it depends on one individual. We are hoping to extend the team dealing with CTS in Canterbury so in the future there may be more than one person able to provide patient specific responses. I would also like to see colleagues from a few different therapeutic areas try it out and see whether it works for them as well as it does for me. One can imagine all kinds of specialist clinics dealing with specific diseases that might be able to use this sort of method - sleep apnoea, epilepsy perhaps (though epilepsy still carries something of a stigma as a diagnosis and may be less suitable for public discussion), migraine, diabetes, Parkinsons - the list is probably endless.

We are trying to publicise this site and it will be interesting to see if any other people are inclined to take the plunge and try something similar for their own clinics. Predictably however there are objections from various regulators relating to data protection standards, confidentiality rules and IT governance which will have to be addressed - one of the reasons for having this discussion thread in this forum as I think patient views are critical to dealing with objections. JB

The patients certainly had very little control. We were not asked whether, for example, when our basic intake info was taken by the nurse, we wanted to speak somewhere private. When the patient in the gurney next to mine was informed she needed an X-ray, I heard the whole thing, and when she came back and was told she had a fracture, again, no privacy. Later an orthopedic surgeon came to see her and, with the aid of an interpreter, told her she would need surgery and explained the procedure, the risks, etc., again I was privy to the conversation. My consult with an orthopedic resident, similarly, was done in the open corridor. It was a situation where we were so tired of waiting that we were not inclined to do anything that might delay things--like ask for a private room to talk in. I'm sure the setup was in violation of US privacy laws and it sounds like the UK ones as well. My guess is that if one of us had an STD or was pregnant we might have been seen and talked with in a more private setting.

That does sound wholly unsatisfactory - the sort of thing one should only see after a major disaster when an A&E department is flooded with casualties really but I'm afraid it happens all too frequently. I encourage the people in my carpal tunnel clinic waiting room to talk to each other however as I think patients can learn quite a lot from each other when you have a roomful of them with the same problem. JB

There is another case in the 'Casebook' of the Medical Protection Society (a medical indemnity organisation) this month in which a doctor was criticised for interacting with a patient through a 'friend' link on facebook - even though it sounds as though the patient actually benefitted from the events in question. The eventual advice given is to ensure that we keep our social and professional lives separated so far as possible, in online interactions as in face to face ones. I think that keeping my discussions with patients on this site, and keeping other material off it, satisfies that requirement but I think it remains an interesting topic and an area in which practice is still evolving, being dragged along by technological change. JB

I came across this forum by chance and could not disagree more with the management team, or the BMA, about the forum setup. There is no risk of compromising patients and this forum both empowers and gives a voice to patients. It could also reduce the numbers of patients who have to cross the threshold for a formal consultation. It could usefully be extended to other services and can be seen as the future of post consultation help and advice. It could in future be serviced by consultants and their secretaries, to take some of the strain off individual consultants who are less proficient at IT or who have intensive workloads.

Well it's certainly interesting that there have been virtually no negative patient opinions so far - on the other hand perhaps those people who would never interact with the medical profession in this way wouldn't be seeing this anyway to make a comment! JB

I was searching for information on pain, wrists, and CT...this site and the manner in which it is conducted is refreshing, and educational in an extremely helpful way.
I have learnt more easily digested facts for the first time in weeks, even more in depth help than from my GP and a hospital doctor " reading " results.
...I have been given a choose and book number, live in Greenwich...will try to use it for Canterbury :-)
To the doctor sharing information and expertise on this website, Thank You...so much...
This is not only an "appropriate medium in which to communicate"....
21c...it will be the only way....it is not FB...no one wants a friend here, but another human being, one with knowledge to share?
Thank You

Thankyou for the comments.I'm afraid we are not accessible via choose and book. We have talked about choose and book a few times and there probably are technical ways in which we could make some clinic spaces available in choose and book they have never seemed particularly interested in doing it, probably because the IT model would be 'non-standard'.

What I would like to see is this website integrated with the 'map of medicine' which many GPs refer to for patient management guidelines and with my booking system. Technologically I think it would then be possible to have a system in which, when a GP first suspects CTS, they are directed to this site and can ask their patient to go away and complete the symptom questionnaire, try a night splint and come back in a couple of weeks with the answers. At the follow-up appointment, if the splint has not solved the problem, the symptom score is not very low, and they are geographically within my catchment area the patient and GP together would then be able to log to the patient account here on the site and click a button to get an appointment. All of that could easily be done with a little investment though it is not 'choose and book' because at the moment there is only one clinic exactly like mine to choose. There would be nothing to stop other areas of the country adopting similar methods though and there are other integrated CTS clinics with slightly different approaches, generally more surgically based, who could probably join in with the scheme if they wanted to.

One other thing - that 'easily digested facts' comment is very useful. I often wonder just how easy it is for a non-medical person to follow the site. Sites such as this are supposed to have patient representatives contributing to the design in order to ensure that they are comprehensible to patients but it is quite hard to find people to act as 'editorial board' and the open invitation to comment in this forum has only garnered a few comments on the actual content. I am however well aware that in places it reads like a medical textbook or scientific journal JB

Text book info etc....some of the information is "medical, scientific journal"..But this is for me a challenge, online all terms and words can be found, as a non medical person this site is an important resource which I have shared with people also looking for information, all with positive feedback. Indeed have also given the site address to my GP who says carpal tunnel is not his speciality, and has offered me surgery first, been told by 2doctors that it would be foolhardy to refuse surgery.
As to Choose and book..researching the 3 hospitals I am offered made sad reading on the outcome of carpal tunnel surgery.
so I ordered splints, delivered this morning...and I will be referred for steroid injection.
I also read the research papers on NICE site, other patients might find this useful for decisions.
Actually when you say, other sites such as this?....there are no other sites such as yours, this site is a treasure trove of info.
Thanx:-)

Thankyou for that - you didn't say whether you have actually had any nerve conduction studies done, though you did refer to someone looking at results. If someone has said that it may be foolhardy to decline surgery it could be that you have severe CTS. Good luck with getting it treated anyway. JB

Hi Jeremy - as a doctor (I'm a fairly newly qualified UK GP) with an interest in electronic patient records and shared decision making, and thinking at the moment about how to increase transparency and communication methods, I am fascinated (and impressed and excited) to find your open forum here and the depth and degree of information passed between you and your patients. The topic was discussed at the GMC conference on Professionalism in November with a special breakaway seminar on the use of social media. The cardiothoracic team at Wythenshawe Hospital were held as an example of unusual and laudable transparency. A recent document produced by Tiko's Group (a managed "closed" Facebook discussion group for GPs) summarises the current professional and legal guidance about posting on social media and my reading of it was that it is near impossible to use online forums for clinical case discussion owing to the problems of ensuring confidentiality (in particular where the sum of information online might be able to identify a patient to someone who knows them) and one's obligations under the Data Protection Act (would a patient consider it reasonable use if their data is posted online?). Of course on your site patients are taking the lead in initiating their use of the forum, but as you say, what is your duty to help them from inadvertently revealing more than they meant to about themselves? I can imagine the degree of concern that the trust must have, which in the prevailing context is understandable, and I am impressed that your forum has been going for so long on the trust website. Indeed I think the trust should be proud of the innovation and pioneering under their name. You must have well-versed responses to criticism / concerns. Without taking too much of your time, I would be interested in your response to how you manage such an open resource in a way that is manageable but remains professionally defensible? What do you do when you are on leave? What if there is something that needs an urgent clinical response? What if you are prevented from posting for some unforeseen reason? Your forums must have to be very closely moderated which must take a huge time resource? Sam.
PS - for your curiosity: I found your site while preparing a teaching session on Shared Decision Making and was going to use CTS as a case scenario.

I am of course aware that various professional groups have serious reservations about the use of social media - which is what prompted this discussion thread to start off with of course. I think it is notable that so far patient's voices are not seen much in such discussions and documents.

I'll just have to point out before I go on that, although the trust allow me to use their branding, carpal-tunnel.net is independent of the main trust website and not financially supported by the trust, at least at present.

The practical issues of managing the site are fairly trivial. Content updates stem from my continuous reading of the CTS literature for research purposes and summarising interesting things that I find in the website pages is a useful way of reinforcing them in my mind anyway so that is just ordinary CME. Maintaining the forum takes about 10-15 minutes a day on average and I am hardly ever away from the net so I keep an eye on it 365 days a year. Should I be unable to do that through illness or whatever I do not think the situation is really any different to my being unavailable to do a clinic - no-one and nothing is truly indispensable. I am of course fortunate in that CTS is basically a non-urgent disorder and there are plenty of people other than me who can deal with my patient's problems. I would however like to see this continuing after me and we are currently training someone who will effectively be my successor in running our somewhat unusual CTS service.

The professionally defensible aspect is much more debatable and I view this as an ongoing test case. The more comments I get from patients (and anyone else for that matter) in this thread the better. I do my best to ensure that all the patients understand that this is a public discussion forum and to encourage the use of anonymous id's on their part but as you can see many of the patients here are as happy to talk about their CTS in public as they are to post their holiday snaps on facebook. At the moment I do not think it is our place to tell patients what they can and cannot divulge. How far our responsibilities go in encouraging them is up for debate I think. My inclinations are not to be too paternalistic about it. I try to be careful not to divulge anything that I know about patients and which may be sensitive, but which they have not mentioned themselves but I am not infallible and if I gave away something clearly confidential then I would fully accept the patient's right to sue. I would not however accept responsibility at present for a posting made by the patient themselves which they subsequently regretted, though I would of course delete anything from the forums which they asked me to and if I thought someone was being particularly injudicious in what they said I would also consider at least temporarily censoring a posting until they had confirmed that they were sure about it. I haven't had to do that so far though.

Of all the issues I am least sure about data protection. The site is currently hosted on Rackspace and is probably wholly accessible to the NSA and GCHQ at least - but one doubts if they are interested. We may well move it to an EU server and implement SSL connections in the near future.

As a GP you might have some thoughts on where I am thinking of going next. At present the 'patient record' section of the site, MyCTS, is entirely input by the patient. I am considering allowing the GPs who share care with me for the CTS patients to add records to this and also inserting some data from my own records - all with the permission/cooperation of the patient of course. I am also considering linking it with my appointment system so that a GP suspecting CTS could call up the website during the consultation, click a button and get an immediate offer of an appointment date and time with me.JB