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Long covid

Posted By perseusqn38

"Long covid"

About: General practices in Tayside

(as a service user),

I have had long covid for almost 2 years. There is no coordination of care. There is no coordinator of care. I have not been dealt with according to SIGN guidelines or the national POTS guideline. There is an abyss between primary and secondary care into which long covid patients are falling, with no assistance to get out. Every time I try to complain I get told that care is being delivered according to SIGN guidelines, but I honestly don't believe that the people responding have even read the guidelines. I have. There should be a doctor running long covid services, there should be MDT case discussion, there should be formal neuropsychic assessment at 6 months. It seems like out of date Government documents are being circulated that are clinically obsolete. 

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Responses

Response from Victoria Sullivan, Project Manager, Elective Medicine, NHS Tayside 15 months ago
Victoria Sullivan
Project Manager, Elective Medicine,
NHS Tayside

Project manage and facilitate change programmes, transformation and service redesign across Elective Medicine services within NHS Tayside

Submitted on 06/06/2024 at 09:11
Published on Care Opinion at 09:11

picture of Victoria Sullivan

Dear perseusqn38,

Thank you for providing feedback about the perceived gap in Long Covid service delivery between primary and secondary care in Tayside. I'm sorry to hear that you have been living with Long Covid for two years and feel disappointed with the coordination and availability of services here.

The CARES service within NHS Tayside continues to operate and has been expanded and embedded into local areas. It includes Physiotherapy, Occupational Therapy, Speech and Language Therapy, Psychology, and the Community Listening Service. A dedicated GP supports coordination and clinical queries. CARES receives support from primary care, community, rehabilitation, and mental health services and refers to integrated multidisciplinary assessment services reflecting the complexity and breath of challenges some people face.

For concerning symptoms, advice and review by hospital specialities is available for specific issues. Lead clinicians in NHS Tayside are actively involved in ongoing research and work with the Scottish Government regarding Long Covid to review processes and support the development of guidance from the Scottish Government, SIGN and NICE.

Challenges remain here in Tayside, as well as worldwide, due to the lack of evidence-based guidance on treating aspects of Long Covid that are not yet recognisable or previously defined. This reflects challenges likely faced by all those impacted by post viral symptoms.

We hope this reassures you that NHS Tayside is adhering to all relevant, up-to-date guidance for Long Covid. Through the coordinated treatment offered, we aim to ensure that you and other Long Covid sufferers are being listened to and supported.

Kind regards

Victoria Sullivan, Care Opinion Manager (on behalf of the Executive Lead for the Post-Covid Programme, NHS Tayside)

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Update posted by perseusqn38 (a service user)

The Chest Heart and Stroke Scotland report on long covid care thoroughly demonstrates the issues I have raised, so I would not call it a perceived gap.

To whom does the GP mentioned provide clinical support? The CARES team specifically state that they are not a medical service. This information is not available on the NHS Tayside website.

Are CARES themselves the integrated multidisciplinary assessment service, or is it meant that they refer to another service, and if so what is this assessment service?

I have received no specialist advice from cardiology after more than a year of review, and after 18 months of waiting have still not even been seen by another speciality I have been referred to.

Please can it also be specified which research studies into long covid are currently available to patients with Long Covid in Tayside?

Response from NHS Tayside 15 months ago
NHS Tayside

Submitted on 14/06/2024 at 15:30
Published on Care Opinion at 15:30

Dear perseusqn38,

Thank you for your reply.

I apologise for any confusion in the original reply and hope this answers your queries.

The Long Covid service within NHS Tayside has been expanded from the original CARES service. The service has been embedded into local HSCP areas since 2022 following the CARES service, running 2020-2022, and includes Physiotherapy, Occupational Therapy, Speech and Language therapy, Psychology and the community listening service. A G.P supported the CARES team informally and in the first year after this change (2022-2023) had formalised sessions to support co-ordination, service development and clinical queries.

The multi-disciplinary Long Covid service team receives clinical / medical support from primary care, secondary care and mental health services as required.

The individual’s GP remains the first point of contact, leads ongoing co-ordination of individualised care and multidisciplinary discussion or prof to prof contacts as required.

Tayside is not currently a registered centre in any clinical trials related to Long Covid specifically but staff are involved in national research and development.

Recognising the challenges you have reported and to support our culture of ongoing and continuous improvement, an upcoming joint session is planned for medical staff from primary and secondary care. Any actions agreed at this session will be supported and progressed.

With best wishes

Nic Richardson

Director of Allied Health Professionals, NHS Tayside

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