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Trying to access health and social care since I had covid

Posted By junekh53

"Trying to access health and social care since I had covid"

About: General practices in Lothian

(as a service user),

It’s been awful, to be honest, from having Covid in the early days of the pandemic, right up to having to resign from my nursing job and adjust to a new life, where I’m disabled.

I’ve had awful experiences with healthcare, to the point I get anxious and nervous engaging, mostly because people assume everything is down to Covid, Long Covid, ME or my weight while disregarding the damage Covid has done to my body.

I’ve had to go private to get anywhere, but my health board refuse to allow my GP to prescribe medication. There are no long Covid services and I’ve been waiting over a year to see a social worker to sort out funding for a proper package of care. There’s been little to no support at all. No dedicated services. Long waits for help.

I’ve had to learn on my own how to pace and do my own research into anything that might help. I’ve had to self fund a powered wheelchair as I have PoTS as well as the other conditions and I also now have sleep apnoea. That service hasn’t called me back for equipment fitting since - two months ago. It’s shameful, I feel thrown out like rubbish and I’m often very, very angry 

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Responses

Response from Louise Davies, Patient Experience Officer, Patient Experience Team, NHS Lothian about a year and a half ago
Louise Davies
Patient Experience Officer, Patient Experience Team,
NHS Lothian

Submitted on 04/06/2024 at 12:54
Published on Care Opinion at 12:54

picture of Louise Davies

Dear junekh53

Thank you for providing your feedback via Care Opinion. I am really sorry that you have had such awful experiences with healthcare. I understand that the lack of support must be really frustrating and I’m sorry to hear that this has caused you to feel so anxious and often very angry.

It is hard to know the full details of your experience to understand where to direct you. If you are looking for further guidance on exploring other treatment options which may be of benefit to you, I would advise you once again to try and speak to your GP. I appreciate this may feel hopeless but there may be service available to support and improve your day-to-day life.

From your story it sounds as though different services have been involved in your care and treatment. If you are unsatisfied with the care and treatment you have received and wish this to be investigated in a formal complaint, can I suggest you contact NHS Lothian’s Patient Experience Team on 0131 536 3370 (Mon- Fri, 9-2pm) or email on LOTH.feedback @nhs.scot. If it is related to services received from your GP please speak to the Practice Manager as many GP surgeries are independent contractors and therefore are not overseen by NHS Lothian’s Patient Experience Team. More information can be found on our website:

https://www.nhslothian.scot/yourrights/patient-experience-team-tell-us-about-your-experience/how-to-give-feedback/complaining-about-your-gp-dentist-optician-pharmacy-nhs-24-or-scottish-ambulance-service/

I am really sorry for your experience and the ongoing difficulties this has on your life.

Best wishes

Louise

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