Post-Covid Service

The Post-Covid Service is for people with symptoms consistent with Post-Covid Syndrome, which continue for more than eight weeks and cannot be explained by an alternative diagnosis. Lasting symptoms of Covid-19 can include fatigue and breathlessness, anxiety and low mood, joint or muscle pain, chest pains, and cognitive changes. Post-Covid Syndrome is often called ‘Long Covid’.

There are many different symptoms associated with Post-Covid Syndrome – in fact, over 200 symptoms have been reported. Everyone will vary in which symptoms they have. As a diagnosis by exclusion, your GP will rule out any other possible causes of your symptoms before you are referred to the service. Some common symptoms of Post-Covid Syndrome include:

• Persistent fatigue
• Breathlessness
• Cardiac and chest symptoms
• Pain – including joint or muscle pain
• Brain fog, and cognitive changes
• Altered sense of taste and smell
• Changes to voice, speech, and swallowing
• Gastrointestinal (digestive) symptoms
• Low mood, anxiety, and mental health and wellbeing changes
• Disrupted sleep pattern
• Dizziness
• Tinnitus and other hearing changes
• Bladder and bowel symptoms

You may also find that some day-to-day activities are more difficult than before, such as being physically active. You may also find that your job or occupation has been impacted by your symptoms. Our physiotherapists and occupational therapists can offer guidance on returning to previously enjoyed activities and returning to work.

The Post-Covid Service offers support and guidance to help people live well with Post-Covid Syndrome (Long Covid). Every person has a range of symptoms and will need different levels of support during their recovery. We support and encourage patients in the self-management of their symptoms. Some people may need specific assessment and guidance, which can be offered through video calls or face-to-face clinics. Here are some of the wider areas which we cover:

• Returning to work
• Fatigue management, such as pacing
• Respiratory symptom advice and support, breathing techniques/management skills
• Cardiac assessment and palpitation advisory support
• Cognitive symptoms and brain fog
• Nutritional advice, such as supporting digestion changes
• Dizziness, Hearing changes and tinnitus
• Physical Activity and movement
• Taste and smell changes
• Wellbeing, adjustment, and coping skills
• Sleep advice
• Advice on speech, voice, and swallowing symptoms

We also have a group education session called ‘Long Covid and Me’, which is offered to everyone in the service. This is an online group that offers an introduction to understanding Post-Covid Syndrome. We highly encourage everyone to attend this online session to gain an understanding of Post-Covid Syndrome. Many patients have shared that the session was extremely beneficial and a positive first step in their recovery.

Anyone can refer to the service, but your GP or healthcare provider must have completed the required blood tests and urinalysis to exclude causes for your symptoms. If you have breathlessness, we also ask that a chest X-ray has been completed. Therefore, in most cases, it is best to ask your GP to make the referral to us. If you are struggling to get a referral to our service, please contact us, and we will support you with this.

For health professionals:

• Post COVID Referral Adult
• Post COVID referral Child

Once referred, our clinicians will review and assess the referral.

Will I get a diagnosis?

There is currently no diagnostic test available for Post-Covid Syndrome/Long Covid. Without testing, post-Covid can be difficult to distinguish from other health conditions. However, this does not prevent you from receiving care if you have a clinical need or from accessing other support you may need.

We require certain blood tests and other investigations to be carried out prior to a referral to us. This will help ensure that no other causes of your symptoms have been missed. You should have already had these tests, and further tests, such as basic observations, may be offered by our service.

You will receive an initial phone appointment, which provides an assessment to ascertain whether this service is right for you. If, after reading this information, you feel that this is not the right service for you, please let us know.

Where needed, and when appropriate, we will be able to state that you have had a thorough assessment and that your symptoms are consistent with Post-Covid Syndrome, and we can inform the relevant people that you are being supported by the Post-Covid Assessment Service. This has been accepted by multiple statutory organisations.

Is there a treatment or cure for Post-Covid Syndrome?

There is currently no medical treatment or cure for Post-Covid Syndrome. We work closely with the research team at Norfolk Community Health and Care, and we are keen to be involved in as many trials and projects as possible.

The current guidance from the National Institute of Clinical Excellence (NICE) recommends a self-management approach to support patients with post-Covid.

Supported self-management means increasing the knowledge, skills and confidence a person has in managing their own health and care by putting in place interventions such as: peer support, self-management education and health coaching.

Peer support occurs when people with similar long-term conditions or health experiences come together to support each other, either on a one-to-one or group basis. Peer support is enabled through relationships that build mutual acceptance and understanding. There is a patient-led NHS supported peer support group with a Facebook group, quarterly newsletters, monthly online education sessions, and ad-hoc online coffee and chat sessions. Details of how to join are in the information you received with this letter.

Self-management education is any form of formal education or training for people with long-term conditions focused on helping them to develop the knowledge, skills and confidence they need to manage their own health care effectively. We offer webinars and education/support sessions for the most common symptoms of post-Covid.

Health coaching focuses on supporting people to make more informed and conscious choices about their health. It enables people to develop the knowledge, skills, and confidence to take opportunities to become active participants in their care. Our clinicians will support you to self-manage your post-Covid symptoms. This means that there will be actions you need to take, and these will require your full commitment to optimise the management of your symptoms.

We are not able to predict whether you will make a full recovery. Many patients will recover fully from their Post-Covid Syndrome. The better you manage your health, the more likely your symptoms will improve, which makes full/partial recovery more likely.

 

You will need access to the internet to use many of the resources we offer. If you do not have internet access, you can get support at your local library or with the help of a friend or family member. If you are unable to access the internet in any way, please let us know as soon as possible so we can find a way to support you.

You will be sent a questionnaire. This questionnaire will be reviewed by a clinician, and our admin team will contact you with an appointment. It is important that you complete this questionnaire as soon as possible, as its receipt will trigger the scheduling of your appointment.

If the questionnaire is not completed, you will not be offered an appointment. If there is a reason you cannot complete the questionnaire, please let us know.

Please read the information provided in the attached service leaflet to learn more about the service and find links to helpful websites. This will help you prepare for the next steps in your care.

Please visit the NHS Long Covid webpage for basic advice on managing your Long Covid.

If you need any reasonable adjustments, please let us know as soon as possible so we can plan for these. NHS England » Reasonable adjustments

Your first appointment will usually be over the telephone. During this appointment, the clinician will gather some information about you, including your past medical history, current medications, and any other relevant details to help manage your post-Covid symptoms. You will have the opportunity to discuss your post-Covid experience and symptoms.

We will offer you a choice of symptom-focused webinars and educational/support sessions that are appropriate to your symptoms and goals. We will ask you to set a small, achievable goal/target and discuss what advice and/or resources you might need to help you with this. You will need to work on this goal before your next appointment.

You will be offered an observation appointment where we will see you in clinic and complete some basic tests (blood pressure, oxygen saturation, etc.). Please note we are unable to do blood tests or scans. We will ask your GP to action these if they are needed.

Where necessary, you will be offered specialist support for individual symptoms.

We may discuss you at our multi-disciplinary team meeting to ensure we offer you the best possible care in complex situations/presentations.

• We expect you to let us know as early as possible if you need reasonable adjustments or do not have access to the internet.
• We expect patients to attend all appointments where possible and to maintain contact with us as required throughout your care. If you have to cancel your appointment, we ask you to give as much notice as possible so that we can offer your appointment to another patient. Please note that, in order to offer a fair and accessible service to all, we have to implement the following: If you fail to attend this appointment or cancel with less than 24 hours’ notice, you may be discharged from our service, and your GP will be informed. This will also apply if you cancel two scheduled appointments.
• We expect you to fully engage in the treatment pathway and to demonstrate how you can manage your Post-Covid symptoms once we have advised you on this.
• We expect you to understand that you are likely to be seen by different clinicians throughout your care journey. This is because each staff member has different specialisms and roles within our service. Clinicians will have read through relevant past notes before your appointment.
• We expect you to understand that you may not be offered a follow-up appointment. Not everyone needs a follow-up appointment. If your symptoms change or you are ready for the next steps in managing your condition, you will be able to contact us and request further support. We call this patient-initiated follow-up.
• We expect you to contact the clinic with any queries about your treatment pathway.
• If you experience any severe worsening of your symptoms or new severe symptoms, please contact your GP/111/999. Please note we are unable to provide emergency/crisis mental health support or prescribe medication here.
• We will not accept or continue to support patients who demonstrate the following behaviours:
  • Use force that results in physical injury or personal discomfort
  • Use bullying behaviour
  • Use bad language or shout
  • Are rude both verbally and in writing
  • Exhibit uncooperative and unreasonable behaviour
  • Display aggressive or violent behaviour towards staff
  • Vandalise property

Long COVID Recovery – NHS

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Royal College of Speech & Language Therapists

Information written by speech and language therapists (SLTs) as a guide for individuals, and their carers/families, living with the aftereffects of COVID-19 infection:

• Long COVID overview
• Brain fog and communication
• Reflux
• Swallowing
• Throat changes after COVID-19
• Voice
• Stammering

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Covid recovery – Guy’s and St Thomas’ NHS Foundation Trust

10 films that provide practical advice to help you recover from COVID-19. You can use them as self-management guides.

Watch these films in any order and try to use some of the suggestions in your own personal recovery plan. Focus on the symptoms that affect you the most.

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Supporting Long Covid Care

This website has been informed by the findings of the STIMULATE-ICP active case finding and HI-COVE studies, which seek to understand experiences of Long Covid in order to support people’s help seeking. It has also been co- developed with people living with Long Covid and professionals who work with people living with Long Covid. It can be used as a tool to help people living with Long Covid talk about their symptoms so they can get care and support.

If you're referred to hospital or other NHS premises for specialist NHS treatment or diagnostic tests by a doctor, dentist or another primary care health professional, you may be able to claim a refund of reasonable travel costs under the Healthcare Travel Costs Scheme (HTCS). Find out more about the HTCS.