Information for patients
First things first - if you have any problems using the site (forgotten passwords, it's refusing to let you create an account etc) - please email Dr Bland (Jeremy [dot] Bland [at] nhs [dot] net) for help - don't struggle on or try find your own workaround!
If you have been on the site before please do NOT create a new account! Email Dr Bland for assistance if you cannot access the old account. The self service password reset is NOT working.
NEW PATIENTS
If you have been asked by your GP to visit this website and complete the diagnostic questionnaire then please read this page at least down to "Other information and frequently asked questions" before proceeding. Once you have completed the questionnaire you can either email Dr Bland directly or post a message in the forum section saying that you have done so and we will contact you. There is no need to forward the questionnaire itself as, so long as you have used the same email address to contact Dr Bland or posted a message in the forum or provided the questionnaire reference number we will be able to access your answers from that information. If we then offer you an appointment you will need to email your full details for us to make a booking - do not put these details on the website:
Full official title and names, please give names in full - not 'Liz', 'Johnny', 'Debs' etc unless that is what you are legally known as
date of birth - many people seem to miss this off.
Full address and postcode
The name and practice of the referring GP - I need the name of a GP to send a report to
Any telephone numbers we can use to contact you
Any dates that you are unavailable - holidays etc
If you happen to know your NHS number that helps too (Note that NHS numbers are 10 digits - a few patients send me their national insurance number instead - these begin with two letters and are no use to me)
You cannot send these details via the website and please do not post them in the forums where they are public.
If you have notified me of a new questionnaire by any method and have not received a reply from me within a week then please try again - emails sometimes do not get through and on one or two occasions people have got their own email wrong when using the end of questionnaire notification button and I have been unable to reply. Please note that the button at the end of the questionnaire to notify me is currently generating an email which does not get through to me so do not rely on this method. We are trying to fix this but it is proving a difficult problem. The self-service password reset is also broken.
All appointments with us are in Canterbury - see the Contacts Page for details of how to find us.
OLD PATIENTS
If you need a second hand treating or have relapsing symptoms after previous treatment by injection then you can refer yourself directly back to us without bothering your GP. If you already have an account on the website then please log in to that old account and add a new severity score. Do not create a new account. Email Dr Bland once done.
COVID-19/CORONAVIRUS
All COVID restrictions are now withdrawn but we would still ask you to show consideration if you are suffering from anything which is likely to be infectious during the winter by deferring your appointment if you are obviously ill. New referrals being received now are generally being offered appointments in 2-4 weeks, slightly longer when public holidays get in the way.
Steroid treatment and COVID-19
It is also worth bearing in mind that there has been some concern that treatment with steroids may make the COVID-19 disease itself worse. This is more speculation than a proven problem and most of the concern relates to treatment with oral steroids but many people who make extensive use of steroid injections are non-medical (physiotherapists etc) and are understandably cautious. As there is no known effective alternative treatment for CTS (apart from surgery of course which is in short supply at present) my opinion is that severe CTS symptoms do warrant treatment by injection as long as the patient is not actively suffering from COVID-19. This is however another factor that you may wish to consider in deciding whether it is worth attending for possible injection. It is now also worth noting that the steroid dexamethasone has been found to be beneficial in patients who are seriously ill with COVID-19, though not in those with milder illnesses.
How to use this website - more detailed instructions and explanations.
From 28th July 2020 there is a simpler way of doing the questionnaire. You do not need to create an account. You can simply dive straight in to the questionnaire from the home page. However, if you do it this way, when you reach the end of the questionnaire and are given a score you MUST make a note of the questionnaire ID number which is shown on that page, otherwise your answers will be lost for good. Email that number to Jeremy [dot] Bland [at] nhs [dot] net and I will be able to take it from there. If you print out the questionnaire result the ID number is included in that printout too. Clicking the button at the end of the questionnaire will also generate an email to me. Emails sometimes fail or get blocked so if you have not heard anything within a few days of sending a notification contact us to check that the message has got through.
If you wish to do this the 'traditional' way - which will allow you to return to your records later and to use other parts of the website such as the forums then you will still need to create an account as follows:
1) BEFORE starting the self-diagnosis questionnaire, create an account on the site. If you have an appointment letter from us already then enter the reference number from that on the registration page. It is 10 characters long, beginning 'EKH' then 6 digits and finally one more letter as the 10th character and is found in the main text of your letter. If you already have an account from a previous visit, please log back into that - don't create a new one. If you have provided a valid Canterbury reference number then you can go straight to step 3 as the account will have been verified automatically.
2) Verify your account by email (Only if you do not have a Canterbury Reference Number) - The site used to send verification emails on account creation but this is no longer happening so you can ignore all mentions of this process.
3) Log in to the site using your newly created account details and complete the diagnostic questionnaire - Once you have created your account please complete the self diagnosis questionnaire and save the results before attending for your appointment. Please do this during the two weeks prior to your appointment and NOT on the day of the test and make sure you are logged in to the site while doing the questionnaire You can print out a summary page of the questionnaire answers and the result. This will be labelled 'aononymous' at the top if you have not registered succesfully.
If you have notified me of a completed questionnaire by any of these methods and not received a response within 2 working days then please try again. Email sometimes fails. I have recently had an example of a patient submitting an anonymous questionnaire showing a high probability of CTS but they mistyped their own email address in the notification and I have no way of knowing who they are or contacting them!
If you are in a hurry you can stop reading here and get on with using the site. The following information is 'extra' guidance
There is a button for saving the results at the result screen in the bottom right corner.You have only successfully saved the questionnaire result when you get to the summary screen headed 'My CTS record' which shows your symptom scores and severity and functional impairment scores. It looks like this:
If you do not reach a page roughly like this when you go to My CTS / My CTS record then you have not succeeded in saving your questionnaire results in the system.
If you are absolutely not able to complete the questionnaire online, don't worry too much, we will get you to fill in a paper version before or after your tests but this does involve spending extra time in the clinic and handling more potentially contaminated items. Making use of the website is a very good way of communicating with the clinic, even before your appointment - feel free to ask questions in the forums if you cannot find answers on the site already.
Note that the reference number we have given you is NOT a password for this site - you choose your own username and password. It is not a good idea to use your reference number with us as your username - this number should be kept private between you and us.
You may wish to read the page relating to data confidentiality on the web before deciding what personal identification you wish to use to create an account.
Any patient living in East Kent who has carpal tunnel syndrome will find it useful to read the page on the East Kent CTS Care pathway to help understand how care for this condition is organised in this area.
Other Information and Frequently Asked Questions
If you have already completed our paper symptom questionnaire - (which probably means you are visiting this site after being tested) - please complete the whole thing again here as we would like you to be able to add follow up information later on this site and you cannot do that without an initial registration and full questionnaire result.
If you have registered previously and forgotten your username/password - please do not create another account with the same Canterbury reference number (the site will not let you do this anyway). Send an email to Jeremy [dot] Bland [at] nhs [dot] net with your name and our reference number and I will reply with instructions on how to access the account.
Waiting list - we try very hard not to have a waiting list at all and in general we aim to send out postal appointments offering a date for testing about 2 weeks after we receive the request. There are times however, usually due to staff shortage or equipment breakdowns, when we cannot achieve this. In March 2011 we experienced a 28% increase in requests for testing compared to previous months which coincided with an unusually dense period of holidays in April which reduced our capacity, with the result that, at 10th June 2011 the waiting times looked like this:
We arranged some extra clinics and the waiting list did come down, though not to my target level of two weeks. Similar problems arose in 2012 and at 20.6.12 we were booking routine appointments in mid August some 7-8 weeks ahead. We have continued to work on the waiting list and by 2014 the the situation had improved considerably as can be seen from the next graph. The clinic staff have now been expanded and when attending the clinic you may now see myself, the surgical care practitioner Michael Nicholas or our carpal tunnel practitioner, Emma Kaile. For now I will usually be present when we run CTS clinics but Emma and Nick are both quite capable of working independently of me. In 2021 we largely stopped seeing patients with very low symptom scores on the web questionnaire and the space created in the clinic by doing this has meant that waiting times since then have generally been close to our two week target though it remains the case that staff holdiays and bank holidays, especially imn the Spring, sometimes result in this rising to 4-5 weeks.
You can help us considerably by telephoning (01227 864047) and cancelling well ahead of time if you are not coming so that we can use the space for someone else. If the questionnaire on this site suggests that there is a very low probability that you have CTS (less than 20% on both calculations) and you have not previously been shown to have definite CTS, we will recommend that you return to your GP so that they can consider referring you to a less specialised clinic. More details of what we found in patients with low scores can be found here.
If you have a very high symptom score on the questionnaire (more than 70%) yet turn out to have normal nerve conduction test results when we test you please point this out to the person performing the test when they tell you your results. We will try to check as many of these cases as possible with the ultrasound scanner as well.
Waiting times in the department - our appointment system for testing is fairly efficient and the vast majority of patients who arrive on time are seen very close to their scheduled appointment time (95% either before or within 5 minutes of scheduled time). If you arrive late then it makes it very hard for us to see the next patient after you on time. If coming by car please leave LOTS of time spare. It is not unknown for patients to spend an hour trying to park at this hospital during busy periods (this is less of a problem while the COVID epidemic is continuing as there are far fewer out-patient appointments overall). If you have not been able to complete the carpal tunnel symptom questionnaire on this site then you should arrive an extra 20 minutes ahead of your appointment time as we will ask you to fill out the questionnaire on paper before we begin. While we are taking extra precautions for COVID you might consider collecting a paper questionnaire from us 30 minutes before your appointment time and taking it back to the car with a coffee to fill it in rather than mixing with other patients.
Are you being seen in the CTS care pathway? - Patients being tested for CTS fall into two groups, either we have simply been asked to carry out the tests and return the results to the doctor who asked for them OR we have been asked to test you and then go on to arrange treatment for CTS if you have it. For the first group of patients testing will usually take about 10 minutes and you will then be able to leave immediately. The doctor who requested the test will be responsible for your further care. For patients we have been asked to treat, IF your tests suggest that you do have CTS then you will usually see me, or our CTS practitioner Emma Kaile, for a more traditional medical consultation focussed on how to treat your problem. Because we cannot predict in advance how many, or which, patients in any given clinic will turn out to have abnormal results it sometimes occurs that 3 or 4 patients at a time need to see us for treatment planning and this can involve some waiting but during the COVID epidemic we have tried to space out appointments to allow for this. We try to see people on a ‘first in first out’ basis when this occurs.
Who does the testing? - The nerve conduction tests in Canterbury are mostly carried out by neurophysiological scientists who are highly qualified professionals who have spent several years studying physiological measurement. These people are not nurses so please do not expect them to behave as such. Occasionally, when staff are short, you may find me carrying out the tests myself (or even manning the reception desk when desperate). In several areas, manufacturers of small handheld nerve testing machines are encouraging a variety of people with no training in clinical neurophysiology to carry out these tests as there is no formal regulation of who is, and is not permitted to use these machines. If you are having nerve conduction studies done anywhere it is a good idea to ask whether the person doing them is actually qualified in neurophysiology.
Where will the results go?- We will send a printed copy of the results and my report to whichever doctor asked for the test. If the request came from a hospital doctor the results will go back to that doctor and not to your GP. If you would like a copy of the results yourself then please ask. It is usually possible to produce a copy more or less immediately though you may have to wait a few minutes.
What arrangements are there for follow up? - If you are being seen under the CTS care pathway then the majority of patients will only need to make a single visit to Canterbury for initial assessment and treatment planning. The total number of visits for all patients referred to the pathway in the first 7 years was:
so 77% of patients have only been to Canterbury for testing once though an increasing number of patietns are now comingback to us either for treatment of the second hand or else for repeat steroid injections. Most follow up is done by post, telephone, by email or via the forums of this website. Details of follow-up related to individual treatments are given HERE.
Ultrasound - I am now using ultrasound imaging fairly extensively in carpal tunnel syndrome and in some patients we may not only carry out nerve conduction studies but may also look at the median nerves with the ultrasound scanner. This procedure is painless and harmless and is extensively used in other parts of the world but is not employed very much in the UK for CTS diagnosis. It is especially useful when surgery has been unsuccessful and when the diagnosis of CTS is difficult because of the presence of other problems which can cause similar symptoms. You can see some ultrasound images on this site.
Patients with normal test results - If you are reading this then you obviously have internet access. I am interested in the outcome of treatment, or non-treatment, for every patient referred to us for testing but I do not have time to systematically chase information from everyone. Please use this website to keep me informed of progress. I am particularly interested in what happens to those patients who have normal nerve conduction studies. What little existing data we have suggests that many of you get better without treatment but such spontaneous improvements are, by their very nature, poorly recorded in both case notes and the medical literature. Use the forums to ask further questions, to let us know how you are getting on, and to send us feedback about this site itself.
Website feedback - Please bear in mind that this site is fairly new and is really an experiment in a new way of running a disease specific NHS clinic. We will be constantly monitoring how it performs and adding to or altering the contents according to user feedback. If you encounter problems using it please try to leave us a message describing the problem in the discussion forum - there is a special topic for web-site issues. At present the commonest problem appears to be people thinking they have completed the questionnaire when they have not in fact saved it successfully - you can check by going to the 'My CTS' tab and looking to see if you have a stored result shown on that page. We would also like to know what you think of the site in general - is it informative, boring, frightening, too complex to navigate - whatever? Please feel free to comment or criticise.
If you are returning for a follow-up visit and need to update the questionnaire then in fact you only need to re-do the final part of the questionnaire relating to how bad the symptoms feel now. You can now access the severity score part of the questionnaire directly from the home page when you are logged in - the 'Take the questionnaire" button changes to become "Add a new severity score" if you have already done the whole questionnaire.
General background - the East Kent CTS Pathway
The East Kent area (Canterbury, Margate, Ashford, Dover, Folkestone) has a well developed formal care pathway for the investigation and treatment of carpal tunnel syndrome - referred to here as the 'CTS protocol' or 'CTS pathway' and the majority of patients with CTS who come to medical attention in this area are now treated under this scheme. It is not however compulsory for GPs to refer patients to the pathway and some of them choose to make other arrangements for their patients with CTS.
Revision date - 9th April 2024
