Closing down of PoTS clinics in the UK

[lunarainbows]

The PoTS clinic I go to (the biggest/second biggest in the UK), is closing down and I was notified that next July will be my last appointment. I understand most people at my clinic have already been discharged this year. I said where do I go? They said go to your local cardiology clinic… which has no understanding or interest in PoTS or dysautonomia. I’m on medications that my GP likely won’t keep prescribing without consultant input. I asked what do I do? They have no answer.

The other big PoTS clinic in London already started discharging patients a year or two ago and doesn’t keep them for long term follow up. They’ve been told to just go to their local cardiology clinics, and that those cardiologists can email them if they need to. No new patients are being referred.

The next largest one I know of also has done the same.

Another well known NHS PoTS clinic (Dr gupta’s clinic) is also closing down.

I’ve now heard of several others where it’s happening too.

We’ve all been told that this is part of the NHS drive to not keep on long term chronic illness patients because we never recover. And I was even told in my last appointment, “PoTS doesn’t kill you, it only affects quality of life”.

Apparently PoTS patients are just meant to be treated by GPs now. But people are reporting GPs are now telling them that “we don’t diagnose PoTS anymore”.

Whatever is going on, it’s awful, and it’s affecting many PoTS clinics… and it’s going to affect a lot of people who depend on this care and medication. I now won’t have any care for this condition in the NHS after next year.

 

[Ryan31337]

It's a rotten situation and this won't help much, but just in case it alleviates some worry: I have never had a problem getting GPs (across a couple of surgeries in different NHS areas) to continue prescribing ivabradine, pyridostigimine and slow sodium based off the initial cardiology recommendation. I hope it goes that way for you too

 

[bobbler]

I just had a look on POTSUK fb out of curiosity to see if they were on the case with this and I can't even see a single post on it.

I assume they must be aware? But I don't know anything about them as a charity and what they do/don't put on social media etc.

 

[InitialConditions]

Well, it's not good that three clinics are apparently closing, especially when rates are rising, but I would suggest changing the title of this thread to something more accurate, as we don't have evidence that all of them are closing, and it might scare people.

 

[InitialConditions]

I just had a look on POTSUK fb out of curiosity to see if they were on the case with this and I can't even see a single post on it.

I assume they must be aware? But I don't know anything about them as a charity and what they do/don't put on social media etc.

I will tweet them and see if I can get a response.

 

[lunarainbows]

Well, it's not good that three clinics are apparently closing, especially when rates are rising, but I would suggest changing the title of this thread to something more accurate, as we don't have evidence that all of them are closing, and it might scare people.

Sorry, meant that all the clinics I’m aware of in the area of London (which is where most complex/new people are sent for out of area referrals), which don’t force people to exercise and help with medication, are either closed to new referrals or closed for good.

I will take out “all”, but from what people are saying on the PoTS UK fb group - a lot of clinics all around the UK are closing. I just think people should know that there is a general push within the NHS to close these clinics. It’s better to be aware even if they’re scared.

PS it’s also more than 3!

 

[lunarainbows]

It's a rotten situation and this won't help much, but just in case it alleviates some worry: I have never had a problem getting GPs (across a couple of surgeries in different NHS areas) to continue prescribing ivabradine, pyridostigimine and slow sodium based off the initial cardiology recommendation. I hope it goes that way for you too

That’s great to know, especially about the pyridostigime! I’ve had an issue with GPs and pharmacists wanting to have up to date consultant letters every 2 years, to back up their prescription. So I won’t have that soon (unless I go private). I’ll just have to explain the situation to them and hope they continue! GPs are very worried about anything regarding medication with me (as they tend to be for a lot of complex patients).

 

[lunarainbows]

I just had a look on POTSUK fb out of curiosity to see if they were on the case with this and I can't even see a single post on it.

I assume they must be aware? But I don't know anything about them as a charity and what they do/don't put on social media etc.

There’s quite a few posts on the PoTS UK Facebook group - ie of all of us patients who have PoTS! But you’ll have to search by hospital most likely to bring the posts up - then there’s lots of them.

I don’t know about the official PoTS UK page. They probably haven’t said/done anything about it and will likely follow the official line: just go to your local cardiology clinic and/or GP.

 

[bobbler]

There’s quite a few posts on the PoTS UK Facebook group - ie of all of us patients who have PoTS! But you’ll have to search by hospital most likely to bring the posts up - then there’s lots of them.

I don’t know about the official PoTS UK page. They probably haven’t said/done anything about it and will likely follow the official line: just go to your local cardiology clinic and/or GP.

that's interesting insight into how a charity in another area works/works their fb when an issue comes up

 

[InitialConditions]

I will tweet them and see if I can get a response.

 

[lunarainbows]

@InitialConditions I’m glad that they are aware of the problem (even if the clinics haven’t confirmed). But I’m surprised the clinics haven’t confirmed! they’ve been telling patients for the last 9 months at the hospital that I’ve been at (although because my appointment was late in the year, I only heard today!). I know my friend was rejected from the other big clinic at least a year or two ago, and was told they were closed to all new referrals. So it’s been a while since this started happening - but nothing is really being done.

I guess PoTS UK doesn’t really have a huge amount of power in this area though, and I guess this is all related to funding.

 

[Saz94]

We’ve all been told that this is part of the NHS drive to not keep on long term chronic illness patients because we never recover.

could you expand on this please? Who has told you this? What does it mean to have an nhs drive to "not keep on" long term chronic illness patients?

 

[lunarainbows]

could you expand on this please? Who has told you this? What does it mean to have an nhs drive to "not keep on" long term chronic illness patients?

My doctor from the PoTS clinic told me this. She said because conditions like PoTS are a lifelong (chronic) illness, and they don’t recover, so the clinic ends up with too many patients and people don’t get discharged. So can’t continue like that. She said they don’t have the funding for it. She said they’re closing the clinic. She then was telling me that PoTS doesn’t kill you, only affects your quality of life, so you can also live quite well with PoTS even without medication and just lifestyle choices, and it’s fine too?! But then also when I pushed for some other meds I wanted to try, she agreed to it, so not sure what she was trying to convince me of!

The NHS drive to not keep on long term patients - as mentioned above - the idea that long term patients just keep getting added to clinics but don’t get discharged, and so the clinic gets far more than it can handle. And it’s a big drain on NHS funding. Several people in the PoTS group have mentioned that they were told a similar thing by their doctor. Hence why so many PoTS clinics (pretty much all in London, which are the biggest clinics in the country and/or take on the most complex patients) are either closed completely or closed to new patients (and/or in the process of closing completely or reducing services to bare minimum & not offering follow up).