Information for patients

How to use this website - please read this page before doing anything else and complete the three steps below in order

1) BEFORE starting the self-diagnosis questionnairecreate an account on the site. Enter the reference number we have given you in your appointment letter in the space for it on the registration page. It is 10 characters long, beginning 'EKH' then 6 digits and finally one more letter as the 10th character. 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 will send you an email with a link to click to verify your account. You need to do this before answering the symptom questionnaire. The verification email usually arrives in your email account within a minute of registering but some email systems block verification emails like this. 

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 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 not able to complete the questionnaire online, don't worry, we will get you to fill in a paper version before or after your tests. However 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. 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 has now 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 newly appointed carpal tunnel practitioner, Emma Kaile. For now I will always be present when we run CTS clinics but we hope that eventually Emma will be able to work more or less independently of me. The waiting times for appointments which are currently pending now look like this:

Routine appointments are being offered mostly 1-3 weeks ahead, most of the small group of patients with  waiting times longer than 21 days are result of patients deferring appointments deliberately.

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, then you might wish to consult your GP again while waiting as the chance that we will be able to help you very much is small. More details of what we found in patients with low scores can be found  here.

Conversely - 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. A good tactic is to use the municipal 'Park and Ride' car park at the junction of the Old and New Dover roads in South Canterbury - there is a specific park and ride bus from there to the hospital. 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 entire questionnaire on paper before we begin.

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 tretament planning and this can involve some waiting. We try to see people on a ‘first in first out’ basis when this occurs. I have not yet resorted to talking to patients in groups though one sometimes wonders whether patients with the same disorder might actually find it interesting to compare experiences directly. If you are sitting in my (rather inadequate) waiting room it is highly likely that someone else there also has CTS!

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 last 7 years so far is:

so 77% of patients have only been to Canterbury for testing once. Most treatment and follow up is done in GP practices, or by telephone, or now by email and via this website. Details of follow-up related to individual treatments are given HERE.

Ultrasound - I am currently investigating the usefulness of ultrasound imaging in carpal tunnel syndrome and in a small number of patients we may not only carry out nerve conduction studies but we 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. We do not yet know for certain whether it adds any useful information to help in the treatment of CTS over and above that gained from the nerve conduction studies. 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 do this by going to the 'My CTS' tab and then the 'My CTS Record' page and selecting the 'Take a new severity score test' option.

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. The Ashford clinical care group are breaking away from this scheme at present - if you live in Ashford and the surrounding area please read the East Kent CTS pathway page.

Revision date - 12th October 2016

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