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Absence of care co-ordination for Long Covid

Posted By SusanT28

"Absence of care co-ordination for Long Covid"

About: Royal Infirmary of Edinburgh at Little France

(as the patient),

I got long Covid in March 2020. I'm now in my 5th year of Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Postural tachycardia syndrome (PoTS), Mast Cell Activation Syndrome (MCAS), sleep apnoea, autoimmune issues and pain pain and pain.

For a year I said nothing, everyone was busy dealing with a pandemic. When I asked for help from the NHS there was none and still no joined up health delivery. I have had to greatly reduce my work and mobility, I've had to accept that I'm cared for now.

I have been faced with disbelieving consultants, patient-blaming, and other health care professionals uneducated on these issues. It's terrible that over 4 years on and we allow this to happen. 

I have paid 40 year NI contributions and had no major health issues prior to this event. There is no pathway and at a time when I am broke I've had to pay for a glimmer of hope from private providers. I was told that ME clinics are where no hopers go and that is true. 

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Responses

Response from Mariska Vernon-Stroud, Patient Experience Team Lead, Patient Experience Team, NHS Lothian 13 months ago
Mariska Vernon-Stroud
Patient Experience Team Lead, Patient Experience Team,
NHS Lothian

I gather feedback from patients to recognise good practise and supporting improving services in NHS Lothian.

Submitted on 03/06/2024 at 11:33
Published on Care Opinion at 11:33

Dear Susan T28,

Thank you for taking the time to share you experience and story on Care Opinion. I am sorry to hear about the long-lasting impact that Covid has had on you and your quality of life. I can hear how unsupported, and unheard you feel which must be resulting in increase stress and greater sense of isolation.

Due to the anonymous nature of Care Opinion it is hard to know the full details of your experience to understand where to direct you to find support and treatment that may improve your health and wellbeing. If you are in contact with your GP or other healthcare professionals can I suggest you try again and speak to someone about your ongoing concerns and symptoms. This may support to identify any potential treatment options.

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

Sorry to not be able advise you more clearly. I do wish you all the best and hope that some potential light begins to show in what can feel like a very dark time.

Kind regards,

Mariska

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