Long COVID in Suffolk

When I was initially referred to this service I was so appreciative of that first consultation, they gave me a whole hour to explain and be understood was just so valuable. Ongoing they have been helpful and I have appreciated their creativity if referals such as to the English National Opera Breathe programme on line which has proved to be helpful to me. I have also self referred myself to the local Nuffield health free long covid counselling service.

All the staff from all the services I've been referred to have been so kind and have listened but nothing that I've been offered has really addressed the problems I experience and they put it down to chronic fatigue because I'm no better.

After being diagnosed with Long COVID, I was referred to this pathway but it felt more about data collection than actual support and I've received no information as I was told I would receive. The member of staff was very pleasant.

I was referred to the long covid pathway by my GP 5 months ago but have heard nothing from them. Not really sure what is offered.

I was referred by my GP 4 months ago. I have not heard anything since, not even a letter to tell me how long I will have to wait. Even when I had an exacerbation of my asthma following covid, I have not been able to get an appointment with anyone, not even my GP.

I had COVID in October 2020. Since then I have had some of the symptoms that are known as Long COVID. Breathing difficulties, anxiety/ depression, phantom smells, tiredness, brain fog, difficulty in regulating body temperature.
The medical profession help at the time of crisis, but then after you have these weird symptoms, they label it Long COVID, but then they have no idea what to do. Tests come back normal, therefore a doctor has nothing to treat! Generally, people are aware of the term long COVID, but not any real understanding of what it is meaning on a day-to-day basis. What can you manage today, what you can’t. Employers need a risk assessment and have a policy to recognise and understand it in the workplace. Long COVID clinics are needed to be referred to. You feel alone and not understood. Services available are patchy and many areas don't have anything yet. It has significantly impacted on my life.