Whats The Course Of Treatment In The Uk?

[rach73]

Hi,

I posted in January to tell you all that I had been diagnosed with POTS. My appointment came through for the consultant at the end of March so nowhere near the 3-4 weeks he told me.

The consultant is a consultant of general medicine and geriatrics! He seems ok, but he just has a special interest in TTT, not sure if he has any other POTsy's on his books.

In the UK who do you guys see? Who looks after you and who decides what meds you should be put on?

I will be very disappointed if at the first appointment he tells me to load up on fluids and salt as I have been doing this for nearly a year. To stop my wrinkly fingers (look like I have been in the bath) I have to drink over 4 litres a day.

I've had to change GP's as my last GP told me POTS didn't exist and his attitude was one of disbelief. I haven't met my new GP yet I am hoping to get an appointment next week.

To be honest I am just so fed up with feeling so rubbish all the time - they know whats wrong with me so lets start trying things! I know that nothing is a guarenteed cure but something that could help would be great.

Sorry for rambling,

Rach

[Noreen]

Dinet's list of UK docs can be found here.

Frustration with the medical profession is a common theme here and crosses all borders.

[rach73]

Thanks. I think I will have to push for a referral to someone who is a specialist rather than someone who is purely interested in the condition.

Rach

[Csmith3]

There aren't enough people with POTS for there to be a set course of treatment so I think people on here would give a variety of answers. I think it depends which symptoms you want to fix and whether you have any other conditions which may affect what you can take. Whoever you see (and I've seen POTS specialists and people who don't know much), it seems to be a case of trial and error with a few appropriate medications. None of the medications are authorised in the UK for use with POTS, so it is a case of finding a consultant who is willing to prescribe the drugs because they take the risk by prescribing off-label. Dare I say, access to the medications is more important than the person prescribing them. I hope none of my doctors read this forum!

I think you have done the hard bit and got the diagnosis. The consultants I have come into contact with have been quite willing to try the main POTS drugs. If I were you, I would try the local person. It is not surprising that the "falls clinic" consultant is mainly dealing with geriatric patients. It is a similar knowledgebase to POTS so I would give it a go unless you happen to live close to one of the specialist centres like Newcastle.

I have kept the management of the condition with the hospital rather than the GP which I prefer because if I get in a bad patch, I feel I have access to the right people to fix it. This might be more feasible at a local hospital than one of the specialist centres who can be more focused on diagnosis of difficult cases than ongoing treatment (which, to be fair, is probably a better use of their time). Whilst I have seen neurologists in the past, I have tended to stick with the cardiologist because I am mainly taking cardiac drugs.

It was a good move changing GP because you need them on board to keep prescribing the drugs.

If you are looking to fix other symptoms then my experience is that you will need to manage that (i.e. sort out the referrals with the GP. You may find you end up seeing a few consultants, each mainly interested in the symptoms which fit into their specialty).

Hang in there. You should make progress this year. Once you find a drug that works, it really does make a big difference to quality of life.

[rach73]

Thanks for that Cath.

I kind of guessed there wouldn't be a set pattern for treatment, I just wanted to find out what other people do.

Thanks for taking the time to post.

Rach

[corina]

hi rach,

i know there's a doctor working very hard on treatment for pots patients in the uk. you could contact our member persephone to find out more. hope this helps!

corina

[rach73]

Thank you Corina. I think its Prof Mathias, so I will try and get a referral there. Long waiting list though. It would be good as I believe I have EDS as well and I know he pushes for that diagnosis as well by referring you on.

Thanks for posting.

Rach

[targs66]

hi Rach (and everybody) -

I'm American but live here in England. I haven't had much luck here. I did have a TTT done in Liverpool ... (can't remember the name, but it is a cardiology hospital!) -- but was diagnosed as normal. I wasn't told to fast for the test, which I suspect makes a difference. Also, my supine BP was 79/45 - the clinicians carrying out the test stopped to ask if they could proceed b/c they were concerned about my BP being that low - but they were told it was okay to continue. I was told that despite the very low BP throughout the test, my heart and BP responded "as it should" and therefore I am normal(!)

The only reason I have a diagnosis (neurally mediated hypotension) is b/c I saw docs at Johns Hopkins last fall. They also did a TTT, but I was fasting, and they administered some kind of adrenaline substance for the second half of the test. When they added adrenaline to my IV line and tilted me, my BP and heart rate plummeted. I was diagnosed with NMH and prescribed midodrine.

I'm also trying to get a referral to Dr. Mathias, but my GP says that he can't do it, so he's referred me to a local cardiologist. He also won't refill my Midodrine prescription because he says it's "off license." I have no idea if the cardiologist has even heard of NMH or POTS or even dysautonomia, but if not, I am going to beg him to refer me to Dr. Mathias or someone who is familiar with the condition.

I hope you have better luck!! I've got my cardiology appt. on April 6 - will let you know what happens. Please keep us posted as to what happens with you - I'd be curious to know if you can get a referral to Dr. Mathias or one of the other specialists in the country.

all the best,

Shelly

[rach73]

Hi Shelly,

what your GP told you about not being able to refer you is a bunch of cr*p! The law changed here in the UK about three years ago and you can ask for a referal to any hospital in the UK.

I think his decision has more to do with his practice budget than it does with any concern about your health. A referal to Prof Mathias is expensive several hundred pounds and it comes from your GP's budget. By sending you to a local cardiologist within your Primary Care Trust PCT, makes it a lot cheaper.

Anna who pops on here from time to time is more up on these things than I am.

The best people you can contact is PAL its patient liason and they will be able to tell you about the referral system in the UK.

The only other thing I can suggest is to google referrals in the UK and see what you find. If after explaining to your GP that you are entitled to the referral and he / she refuses then complain to the practice asking them for an explanation in writing. If that doesn't work go to your MP.

Im sorry that your GP is messing you about like this. I have just left my practice of 15 years due to their shoddy treatment.So I know what a nightmare it is. Sorry you have to experience the NHS like this.

Good luck

Rach

[Csmith3]

Shelly

I hope you have some joy with the local cardiologist. If not, ask if you can see Adam Fitzpatrick or one of his team in Manchester if you are still in the area. They have all the relevant expertise and I imagine they have more capacity than Prof Matthias' team so you could be seen sooner and would not need an inpatient stay for testing.

The GP won't prescribe midodrine without a UK consultant telling them to do so.

Good luck!

[corina]

actually i wasn't referring to dr mathias, but to a doctor at the bristol heart institute in the uk. was given his name by our member persephone, who works with him and has had amazing results being treated with octreotide. i'd recommend you to pm her to get more infortmation!

good luck,

corina

[targs66]

Thank you, Rach, Corina and Cath!!!

That is such helpful information. I am not good about "fighting" with my GP b/c I don't know what the rules are. I will arm myself with that information before I go back to him. I think I'll see the local cardiologist first (the appointment is early April, so it's not too far off) and see what happens. If that's a dead end, I'm going to have to go to battle in order to get a referral to Dr. Mathias or Dr. Fitzpatrick in Manchester (or the doctor in Bristol).

I haven't heard of octreotide; will also look into that in the interim.

I really appreciate all the information.

Rach - keep us posted as to how you get on with your appointment at the end of March.

best,

Shelly

[rach73]

Hi Shelly,Corina (everybody)

Thanks for the messages. Sorry I haven't replied its been an awful day. Ive just found out that the DVLA are looking into revoking my driving licence on medical grounds. I had no idea that POTS was a illness you had to notify the DVLA about. My Gp hasn't said anything and nor has the hospital consultant.

We've had a bit of a crappy month on the 28th Jan my husband was involved in a nasty car accident. He was hit by an uninsured drunk driver in a stolen car. It wrote off our car and my husband has quite seriously injured his spine amongst other injuries.

I had to renew my photo on my licence at the same time this happened so sent it off and out of courtesy told the DVLA about the POTS diagnosis! Now I find out any type of tachycardia has to be notified to them due to the risk of dizzy spells and fainting. I had no idea and its come as a huge shock! I completely understand the safety thing, in fact I only drove three times last year for 5 mins a go. Its just hit me really hard my driving licence which I have had for 20 years - endorsement free was my last little bit of independence. The thought of losing my licence is breaking my heart. Silly isn't what can just push you over the edge and make you go back to grieving your old life.

So UK Potsy's take heed even if you dont have dizzy spells or faints you are still required by law to notify the DVLA. I will let you know how I get on.

Rach

[Csmith3]

Some medical conditions do need to be notified to the DVLA, but not all. For example, a simple faint with prodrome which does not happen when the person is sat down is not notifiable. However, if someone is repeatedly fainting and there is a suspicion it could be, for example, a seizure or serious heart condition which could happen at the wheel, that is notifiable. There are, of course, many variations on a theme. I appreciate that the DVLA website for the public says that fainting (as a single category) needs to be notified, but this is a simplistic message. I can understand why they do this because they don't want people to self-diagnose or never get a medical opinion when they really should.

In my view, there are two ways of approaching this. You can tell the DVLA there is a potential issue, fill in the forms and your case can be assessed by a medical adviser. Or, there is guidance for medical professionals about what is and isn't notifiable and have that conversation with the consultant or your GP who is familiar with your case and take their advice. Some of this guidance is available on the DVLA web-site if you want a feel for what is and isn't a problem. If your doctor says you need to notify, then obviously you have to do so. If not, you can save yourself some form filling, insurance issues and a temporary ban in the meantime.

I am assuming here that someone has had a neurological and cardiac work up so that the high risk conditions have been ruled out. If you don't have a firm diagnosis but are having issues with loss/altered consciousness, the answer will invariably be that you have a temporary ban on driving until the cause, triggers and frequency have been identified as far as possible.

Rach - sorry to hear you are having a hard time. I hope things improve for you soon. I suppose that whilst you are in the early days of diagnosis and starting treatment, you might have to wait a while before you can drive again. I won't tell you how long I had to stop driving for(!) but you are in a better place now than I was 20 or even 10 years ago.

[targs66]

Rach, I'm so sorry to hear that you've got this new added anxiety to deal with. I hope you can get some sort of a fair assessment before they determine that your license should be revoked - I mean, if you have never had fainting or dizziness issues while seated, then it seems extreme to revoke your license. I totally understand the safety issues, and of course, we can't put others at risk, but still....

Really hope you can keep your license. Good luck with this, and keep us posted.

all the best,

Shelly