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I don't want to be perceived as a burden

Posted By Covid 2020 sad

"I don't want to be perceived as a burden"

About: Mental Health Community Services / Post Covid Syndrome MDT Clinic

(as a service user),

Got covid 19 April 2020.

With my own research I found out  about covid rehab now in NI November 2021

Contacted GP to get a referral.  If GP knew I had long covid why could they not have automatically referred me . Again I have to advocate for myself.

Assessment over telephone December 2021.

Referred to respiratory clinic . NI really needs a multisystem  clinic for long covid patients to assess all the symptoms they are dealing with.

May 2022 completed 6 weeks of rehab.

This consisted of doing exercise 2 mornings for 6 weeks. A psychologist for an hour and the council did a morning of healthy eating.

 We were monitoring heart rate while completing a walk test and after exercise. No feedback given about the results of recordings. Telling patients that it's self resolving ,wait and see you will better isn't the answer and comparing to other viral illnesses in the past doesn't help give me peace of mind no one has an answers from research.

The staff were friendly at the rehab course.

Then after 6 week course was over .I'm alone . No follow up from anyone.

I don't want to contact my GP any further as I don't want to be perceived as a burden on overstretched Health Service. No treatment options.

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Responses

Response from Dr Elaine Smallman, Clinical Health Psychology Post/Long Covid Service, Northern Health and Social Care Trust 15 months ago
Dr Elaine Smallman
Clinical Health Psychology Post/Long Covid Service,
Northern Health and Social Care Trust

Submitted on 31/01/2023 at 18:07
Published on Care Opinion on 01/02/2023 at 08:54

Dear Covid 2020 sad

Thank you so much for taking the time to post your story, I'm sure it wasn't easy.

It will be shared with those making decisions regionally about these services moving forward, as well as shared among those of us working in Post Covid services.

Your reflections are valid concerns, and it is understandable for you to hope for ongoing care with such a challenging condition. I hope you will reach out again and seek a re-referral to the Post Covid Syndrome Service via your GP. Clinical Health Psychology Post Covid Service is accessible from this route as well.

Best wishes

Elaine Smallman

Specialist Clinical Psychologist

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Response from NHSCT 15 months ago
NHSCT

Submitted on 31/01/2023 at 19:24
Published on Care Opinion at 19:24

Hi,

Thank you for taking the time to provide this feedback. My name is Gary Walls I am the Team Leader for the Post Covid Syndrome MDT clinic in the Northern Health and Social Care Trust. The MDT clinic aims to provide advice on how to manage the symptoms related to Post Covid Syndrome (or Long Covid as it is more commonly known). We also consider onward referrals to other helpful services, for example the Pulmonary Rehab programme. Post-Covid Syndrome is a complex condition and is still poorly understood, however research is ongoing and knowledge is improving. Current recovery advice is based on a symptom management approach. Recovering from Long Covid can be a slow process and many people feel frustrated. Please consider contacting your GP if there has been no improvement with your situation- your GP has the option of re-referral to our service.

Thank you again for your comments, we do try to improve our services where possible and service user feedback is an important part of this process.

Gary Walls.

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Update posted by Covid 2020 sad (a service user)

Hi Gary

Thanks for the response but I don't see the point in going back to GP for a re referral.

As symptom management is the only current recovery advice,I can do this myself by pacing and rest

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