The Suffolk VASP held an event on 20th July 2021 to talk about the impact of living with long covid.
The VASP network is offering a follow up session titled ‘Let’s Talk About Long Covid 2’ on Tuesday 7th September, 11am to 12pm. This is a open community conversation – equally welcoming both members and non-members of the friendly (free) Suffolk VASP network.
You can find a photograph of the flyer for this event below.
If you wish to attend this event please use this link: Click here to join the meeting
Find out more below about the experiences of people living with long Covid, as discussed at the first meeting in July.
Listening to people’s experience of having Long Covid and of seeking help
Several individual patients with Long Covid shared their experience of living with the condition. They spoke about their symptoms, seeking help and diagnosis, and any treatment they have been offered. Below is a summary of each of these areas.
Symptoms – It was noted that the amount, variety, and unpredictability of symptoms make it impossible to name them all. Individual patients experience different combinations of symptoms, and one individual’s symptoms may differ from day to day, or even hour to hour. Symptoms mentioned included:
- Breathing difficulties
- Scarring on lungs
- Continued loss of smell
- Strange smells
- Phantom smells
- Continued loss of taste
- Intermittent fatigue
- Extreme fatigue
- Muscle weakness
- Muscle aches
- Numbness (including numbness that moves around the body)
- Tingling lips and tongue
- Stomach pain
- Orthostatic Intolerance
- Autonomic Dysfunction
- Thyroid problems
- Inability to heal wounds at a normal rate
Mental & Emotional
- Cognitive impairment
- Brain fog
- Inability to follow written text
- Memory difficulties
- PTSD including flashbacks
- Emotional dysregulation
- Inability to maintain employment
- Break down of family relationships due to lack of understanding
Individuals reported being “gaslighted” by medical professionals – not being believed and/or being told that their symptoms were caused by anxiety and depression, excess weight, or “all in your head”.
Many patients found their GPs simply didn’t know how to treat them or what to advise. The wide variety of symptoms made it difficult to know which specialty to refer patients on to, or which to try and treat first. Further into the pandemic the term “Long Covid” was recognised and GPs now know of the diagnosis and some symptoms but still seem at a loss of how to treat them.
Patients who never had a positive Covid test for various reasons have found it very difficult, for one participant impossible, to then receive a diagnosis and help with Long Covid.
The overall report given by those affected with Long Covid was that treatment options remain very limited and difficult to access. Many found they had to do their own research, navigate the system alone, and fight for treatments and referrals.
Some patients have received referrals to specialties relating to specific symptoms, however patients experienced a lack of communication between specialties which could have led to more comprehensive care.
One individual was referred to the COPD clinic where a Covid rehab programme has been set up, which offers both educational sessions and activity sessions over the course of 6 weeks.
Individuals reported GPs advising rest as the most common treatment. Many have been prescribed anti-depressants and anti-anxiety medications as well as inhalers and nebulisers.
Long Covid clinics have now been set up and more funding for these has been promised by government. Waiting lists to be seen are often very long and many individuals have found it difficult to get a referral from their GP. Long Covid clinics offer support, advice, and treatment of a wide range of symptoms but some GPs seem to be misinformed about this and believe that the clinics only deal with breathing and cardiac problems.
- Anyone with symptoms experienced for over 12 weeks thought to be Covid related can be referred by their GP. It’s not necessary to have had a positive Covid test.
- When the GP makes the referral there are some screening questions which must be answered along with an O2 reading, chest x-ray and bloods. Investigations into individual symptoms should be going on alongside the referral.
- Assessments are mostly by telephone but F2F appointments are possible. During these assessments they will review information from the GP, look at past medical and social history, and then talk about what’s going on and what the problems are. Everyone is new to this and are learning together, drawing on experts, but it is a steep learning curve, so professionals may not always get it right. Multidisciplinary teams conduct weekly reviews for more complex cases, looking at the need for any extra investigations or referrals.
There are currently clinics in West Suffolk, Ipswich, and Colchester. The most common referrals made are to the ME/CFS Clinic, Wellbeing Service, SEPI, Speech and Language Therapists, and Dietetics. The Long Covid team are trying to coordinate referrals so patients are not passed from pillar to post. They are also trying to bring more specialties in house for ease of access for patients.
There is currently a music therapy pilot in Ipswich as well as referral to the English National Opera program. The service also provides social prescribing and vocational support. They have ensured the availability for anonymous feedback on the service alongside the Friends and Family test.
Sharing ideas about what support could be helpful from both Statutory and Voluntary sector groups and services
Individuals living with Long Covid and service providers in both the statutory and voluntary sectors discussed ideas on what intervention, support, and services could be helpful for Long Covid patients. Service providers also informed the group of what services they currently have available.
Those living with Long Covid noted that throughout their journey they have often felt alone and unsupported; they highlighted the need to have support with emotional and mental health as well as physical health.
Information on support groups and clinics need to be made more readily available along with an increase in these services, they think producing a “what’s on” list could be very beneficial.
Service users felt there needed to be more understanding in the workplace and more accommodations and support put in place to enable people with Long Covid to stay in employment.
Service Users said there needs to be more education for healthcare providers, for a greater understanding of how Long Covid might present and a better multi-disciplinary approach to be to linking up to help people together.
Asking, what would the people who have Long Covid like to happen next?
Long Covid patients were given an opportunity to comment on what they would like to happen next, and the following points were made:
- Services to ensure patients do not feel alone from the onset of symptoms all the way through diagnosis and into treatment, recovery, and learning to live with Long Covid.
- A network of peers who can provide support and share experiences.
- More help with emotional health as well as physical health.
- To ensure GPs make referrals to the Long Covid service, where there is a team with a high level of understanding of the condition and the ability to listen and help.
- More community understanding of Long Covid, its impacts and the support available.
- More education for GPs and GP surgery staff, to give them a better understanding of Long Covid.
- More funding for resources in both the statutory and voluntary sectors.
- A consistent approach to managing Long Covid across all GPs and services.
- To be drawing research efforts and findings from different sources and locations together, making efforts more streamlined and efficient, as well as bringing in individuals voices who have the valuable lived experience.
- A further meeting and conversation to talk about what needs to happen next to best help people living with Long Covid.
Data and information
The prevalence of Long COVID in the adult UK population is thought to be as high as 1 in 17 from data (Imperial College London). This is significantly higher than an original estimate from Office of National Statistics (ONS) data. Sharing a link to the pre-print study from Imperial College London;
Spiral: Persistent symptoms following SARS-CoV-2 infection in a random community sample of 508,707 people (imperial.ac.uk)
37.7% of patients who had COVID reported at least 1 symptom > 12 weeks after infection
14.8% of patients reported at least 3 symptoms > 12 weeks
The prevalence % was lower when discussed within a recent webinar (27th July 2021) by the Zoe Covid Study team at Kings College London… ‘Long Covid : What do we know so far?’ Link; https://www.youtube.com/watch?v=f9E4VigYt0w – They suggest (for this part go to 21mins 30s) that ‘women are more likely, perhaps twice as likely, to get Long Covid as men’ and people with asthma are also notably more likely to get Long Covid.
Since our meeting in July 2021, the Office of National Statistics (ONS) have released updated reporting about the prevalence of Long Covid – dated 5th August 2021;
There is accurate data for the number of people who have had a positive Covid 19 test, by geographical area. The total number of people who have had Covid 19 is for sure far higher.
Please contact Simon King at Healthwatch Suffolk with any questions, e-mail: firstname.lastname@example.org