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We had a similar experience in Jan 2022 Jo when husband presented with urinary symptoms. Due to Covid restrictions. a urinary sample was requested by surgery who do a dip test to see if its an infection. No face to face, examination etc. Dip test ( inherently unreliable) says no. Infection, do...

How wise you were..!

I am surprised that Caroline R's and her malign influence had passed you by...!? I think I have been around all this stuff and nonsense, not 'Health-Sense' far too long. Trouble is, despite my advancing years, my memories and recall are intact! Perhaps I am reincarnated as a...

Environmental exposures are a possibility, but you cannot get it looked at. In 2001, the family were impacted by agricultural spraying of glypgosate Affected eyes in particular. HSE field officer did come out. Pesticide Impact Appraisal Panel notifed. Big black hole ensued...... I developed...

CR passed away last December, however her legacy lives on.........

Lord Dick Taverne....... Oh no! Committee members and trustees

..... 'Originally named the Campaign against Health Fraud, it was changed to HealthWatch at our second AGM, held on 12 July 1990, and registered as a charity. It went on to be renamed HealthSense in 2022, in response to confusion resulting from the government's newer initiative "Healthwatch...

I eas confused (easily done!) By reference to HealthWatch ..... Just for clarity and simple souls like me... Nick Ross' HW, appears to be called Health-Sense, ...... after the creation of 'Healthwatch' in 2012 roll out. So no association with current HW!

It needed saying .......thank you.

Your guess is correct. :facepalm::giggle: As you would expect, our complaints fell on deaf ears..... They did the survey without consulting or co producing.. They made no attempt to align it with the one done for this purpose in 2022 thus rendering results incompatible potentially......

https://healthwatchsuffolk.co.uk/news/give-your-views-on-plans-for-new-combined-post-viral-condition-services/

Thanks Daisy. We are hard nuts to crack. Jointly, an impossible task for opposition! But we have been blessed with some exceptionally committed Transformation Commissioning and Contract staff. Lovely people who have given us respect, hope and empowered us to keep fighting. They are the stars in...

Prospective open-label trial with rituximab in patients with chronic inflammatory demyelinating polyradiculoneuropathy not responding to conventional immune therapies https://www.facebook.com/share/p/18JgLWy5w1/

I could not agree more with all the sentiment here. Our Eastern region was unusual in that it had a well respected regional but 'covert ' under the radar admin/outside bureaucracy, consultant lead service in the 1980s out of Pajet Hospital Lowestoft. Suffolk and Norfolk patients. After it was...

Yes, Jo. We have repeatedly refused to sign up to a therapy based service, (since 2003!!!) Rejecting a therapy led / community based service. That's where our fight started under old PCT regime. Roll on 20 yrs. 2024 rejection of Foundation Trust model. Especially as the existing LC service has...

This one..? https://www.letstalksnee.co.uk/me-cfs-long-covid-pathway/surveys/cfs-me-long-covid-patient-and-carer-focus-groups-sign-up-form Our coproduction work was based on this 2022 survey and related outcomes.(We were fully involved with framing this survey, unlike the 2024 one sprung on us...

https://suffolkandnortheastessex.icb.nhs.uk/news/give-your-views-on-plans-for-new-combined-post-viral-condition-services/

Grateful for all your interest and your comments.

Probably as they issued us a broken link first off...... I will check via their website