UK Sufferers: Contact your local health councillors and MPs

[climb]

Hi everyone,

For UK PSSD Sufferers:
now the general election is over, we need everyone to contact their MPs about PSSD.
Dr Healy put a letter template on a page called 'the politics of PSSD' on the RxISK site if you need help with what to write. If you do a google search, you can find it.
The other thing we need to do is contact our local city or town council health councillors.
During the election campaigns, I was advised by my city councillor to contact my health councillor about PSSD. I did and she is very interested, was already aware of it, and has offered to meet me in a location that would suit me. This shows a level of care and interest that I haven't experienced from my previous MP.
If we can mobilise Health Policy decision makers at a local level, as well as our MPs, this looks to be a good way to make an impact, since the patient safety commissioner and department of health seem less interested.
If anyone wants help with what to write, contact me and I will help you.

[andy013]

Thanks for posting this. i might try it as I already wrote to the Patient Safety Commissioner. I think their general attitude is that they won't do anything until there is better scientific proof of PSSD but they won't fund any research so I'm not sure where they expect it to appear from. You would think that patients reporting harm wouldn't have to raise donations to prove that they have been harmed before anything is done. Obviously, I don't expect them to raise an alarm for every person that reports being harmed by a drug, but it seems to me that if they get enough reports they should fund some studies looking into it further.

Btw, if anyone uses that letter template on RxISK, you will need to edit it since Steve McCabe in no longer an MP.

[climb]

Patient safety commissioner doesn't seem to care, unfortunately. I think that we need a more grass roots / local approach. Cabinet members for health ij local councils work with MPs. If we can get these people making noise in their city and to the healthcare management that they work with, hopefully national level will start to pay more attention.

There's a WhatsApp group for UK pssd sufferers focusing on taking action through MPs and cabinet members. Let me know if you're interested in joining. We're getting a list of all the MPs who are involved.