UK based Charity / Organisation / Committee

[climb]

Hi everyone,

I wonder if we'd have more success with PSSD activism and raising awareness if we formalised some of our activities a bit more.

For example, if we created a registered charity, built a related website etc. Perhaps had a committee to agree some coherent strategies, we'd have more luck trying to get the government and the healthcare system to increase awareness and change things. It will make us look more like an entity that they can formally engage with. It's much tougher doing things as an individual. We're stronger when we're a group.

I think that the best thing would be for us to basically work as an extension of what RxISK https://rxisk.org/prize/ are trying to achieve. Any UK based charity should transfer any funds we generate to RxISK, as this would be the most logical thing to do. We'd also be able to draw on help from David Healy and others if we get to a situation where we're able to meet with UK based Policy makers.

I'm making a website at the moment. It won't be anything different to other blogs that already exist, but should still be useful, and can be a starting point.

The wider goal is to encourage groups of sufferers in different countries to do something similar, then we can create an international committee / action group that shares ideas and experiences and agrees strategies. Perhaps we would also be able to provide some administrative and operational support for those that are active in research if they think it would be helpful.

I'm not sure if there is anything similar that is social media based already exists, as I'm not interested in facebook.
If anyone UK based is interested in getting involved in this, get in touch, we can get started.

[Frog]

I’ve recently spoke to Dr Healy about this but he doesn’t believe it’s a good idea. I do believe we need more structure though

[climb]

I’ve recently spoke to Dr Healy about this but he doesn’t believe it’s a good idea. I do believe we need more structure though

Which aspects about what I've suggested does he not think would be a good idea?
Presumably, it's just the RxISK bit?

I've re-read what I wrote and I worded this badly. What I actually meant was that any money generated could be transferred there, not that anything we'd be doing would in any way be affiliated with the organisation.
On second thoughts, setting up a charity could perhaps be counterproductive if it didn't have the potential to be completely independent and define it's own objectives for how to use money raised. I can see why he might not be favour of something that was even loosely affiliated with RxISK.

I think having a website and a means of coordinating activism more locally could be helpful, though.

[Frog]

He said that the RxISK prize is already ran through a uk charity and that too many organisations would mean nothing got done as no one would make enough to do anything. He said it’s difficult to raise money for PSSD as it is.

I can see his logic but at the same time we really lack structure. A committee could be a good idea but then we run into the same issues we already have, people are scared to get involved. I’ve contacted loads of press organisations, media figures, charities and researchers over the past year and I’ve only had one reply, my MP. It’s a really tricky situation

[climb]

Hi Frog,

He said that the RxISK prize is already ran through a uk charity and that too many organisations would mean nothing got done as no one would make enough to do anything. He said it’s difficult to raise money for PSSD as it is.

OK, that makes sense, I will abandon that idea.

I can see his logic but at the same time we really lack structure. A committee could be a good idea but then we run into the same issues we already have, people are scared to get involved. I’ve contacted loads of press organisations, media figures, charities and researchers over the past year and I’ve only had one reply, my MP. It’s a really tricky situation

It is difficult, but with certain types of people and organisations, we're more likely to get somewhere or make something count if we write on behalf of a group of people. It's easier for them to dismiss us if we are individuals.
Now is obviously the worst time to be contacting anyone about anything health related, as they've got their hands full with COVID, but once that has died down, we need to be trying to engage with the department of health and also with patient liaison officers and similar avenues through the NHS to encourage them to raise the issue within their trusts. If we do it in a coordinated manner so that we have plenty of sufferers willing to be associated with communications, it will have more impact.

I'm working on a website, so maybe I'll just include some particular avenues for action that I've identified within the site.

[REVOLUTIONIZE]

I think that getting people together in the UK and trying to connect with CEP UK, which a secretariat to a parliamentary group for Prescribed Drug Dependence, would be beneficial for us. I came across many doctors who said that PSSD only exist in literature. We could try to show them that we exist in reality and need help by raising it collectively with Public Health England and similar organisations.

Running a charity of course requires some effort, but it is possible.

You can check PAST Wales on Twitter, they are quite new charity and they talked about PSSD. They also cooperate with Rxisk. That's probably the model that you're thinking about atm.

[climb]

Even if a charity is not feasible or perhaps not desirable, we could start an association, which is just a group with a common interest or goal.
https://www.ionos.co.uk/startupguide/ge ... sociation/

There are associations being set up currently by PSSD and PFS sufferers in other European countries, and they already exist in some. As a consequence of the work done by the German PSSD association, there is now a sexual health ambulatory in Germany which specifies treatment of those suffering with enduring sexual dysfunction caused by medications as part of its remit. I'm going to be talking to some of the people involved in these initiatives in other countries within the next couple of weeks as part of a plan for us all to share ideas and help support each other to changes things in our own countries.
I will also read up on the legalities of starting an association in the UK and report back.

I'm sure that there are professionals who acknowledge the existence of PSSD (I've spoken to 2) but we need a stronger formal presence to help them to help us, because, unfortunately, they are in the minority.

[omar90]

I would be keen to help out with setting up a charity/organisation in the UK. Maybe a first step should be compiling a list of interested members and setting up a way of communicating together.

[link11]

We need something like it in my opinion. Some of us have tried campaigning for awareness on twitter and we just get labelled anti-psychiatry, "pill shamers" and strongly denigrated by Drs. Absolutely disgusted with behaviour of RCP "professionals" and their disdain for us plus shameless attempts to censor.

If this happens though I don't think you should use the term PSSD. Myself and many I speak to absolutely hate the name of this condition. It detracts from the emotional numbing aspect which many find to be the worst part, placing the emphasis fully on sexual dysfunction. We need to highlight both but with a name like PSSD we are heavily limiting ourselves. Unnecessarily in my opinion

[climb]

I would be keen to help out with setting up a charity/organisation in the UK. Maybe a first step should be compiling a list of interested members and setting up a way of communicating together.

Great, that you'd like to be involved. We need a website to show people that an association exists so that others can find it. I've made a start on something general which could be adapted once we know what we're aiming for.
A list of interested members would be good. People can then be contacted via email if there's a particular initiative or need. For those that want to be more involved, we could have online meetings sometimes.

We need something like it in my opinion. Some of us have tried campaigning for awareness on twitter and we just get labelled anti-psychiatry, "pill shamers" and strongly denigrated by Drs. Absolutely disgusted with behaviour of RCP "professionals" and their disdain for us plus shameless attempts to censor.

If this happens though I don't think you should use the term PSSD. Myself and many I speak to absolutely hate the name of this condition. It detracts from the emotional numbing aspect which many find to be the worst part, placing the emphasis fully on sexual dysfunction. We need to highlight both but with a name like PSSD we are heavily limiting ourselves. Unnecessarily in my opinion

I've seen some arguments and comments of this nature on twitter. It's really upsetting to see the way that some people respond to posts raising awareness of PSSD.

Some groups in other countries have had success in having PSSD, PAS, PFS more officially acknowledged. I think they've done this by working in groups and managing to communicate in the right way with the right kind of people, so let's try and learn from them and see what we can do.

I agree that the term PSSD is misleading given the potential wide range of symptoms that sufferers have. . Perhaps there's a more all encompassing term that we can use - Post Antidepressant Syndrome, for example, but have to be guided by the Medical Professionals that are on our side.
There are lots of things that we could potentially do once we are up and running, but the most important first steps are:

(1) Find people who are willing to be involved in actual running and admin of the association
(2) Work out what the legalities are of setting up an association - it's less bother than a charity, so shouldn't be too hard...
(3) Find people who don't want to actually run the association but want to be members, receive updates etc.
(4) Determine the purpose and goals of the association
(5) Determine the rules of the association
(6) Make a website