“Helping me to unravel my psychological trauma”: NHS Post-COVID Syndrome support helps hundreds in first year
People with experience of Post-COVID Syndrome are sharing how they have benefitted from the Post-COVID Syndrome Service (PCSS) at Greater Manchester Mental Health NHS Foundation Trust (GMMH), one year on since its launch.
The service, which launched on 01 April 2022, helps those who are suffering from lasting effects and impact of COVID-19 infection to improve their physical and psychological wellbeing, and daily functioning.
It does so by helping people find ways of managing persisting symptoms, and discover what changes can be made to make a meaningful difference to their quality of life.
The team is made up of a range of different health professionals, including Psychological Wellbeing Practitioners, Cognitive Behavioural Therapists and Psychological Therapists; alongside a Clinical Health Psychologist, a Neuropsychologist, and a Pharmacist.
They work closely with GPs and other local health services to provide care in a holistic and collaborative way.
So far, over 700, people across Greater Manchester have been referred to receive Post-COVID mental health support; with 315 people still currently receiving care.
The majority of service users are female (70%), with the average age being 47, ranging from 16 to 87. Whilst the majority of service users are white (84%), 8% are from an Asian background, 3% are black and 4% have a mixed or other heritage.
Of those who have completed a course of talking therapy, over half showed reductions in scores on standard measures of anxiety and depression, indicating they had recovered from the clinical levels of anxiety and/or depression they were experiencing.
Danny’s experience of Post-COVID Syndrome began following a period of hospitalisation due to COVID-19 infection. He said:
“Returning home from hospital was an amazing feeling, but it was just the beginning of my journey. I have had numerous physical health problems - such as loss of mobility; debilitating fatigue; and muscle, joint and bone pain.
“I have also experienced many mental health challenges. First was the realisation that I had nearly died, and how that would have affected my family. I also battled with thoughts of ‘Why me? Why did I survive when many others who were in the same situation did not?’
“During my time in hospital, I was placed into an induced coma which was also very traumatic, as I experienced visions and delirium. Back at home, I experienced flashbacks, and I tried to block them out of my mind, which just made my anxiety and overall mental health and wellbeing worse.”
Danny self-referred to GMMH’s Post-COVID Syndrome Service after being given information by one of the clinicians who had helped him at ICU. He said:
“My therapist was brilliant from day one to completion of our sessions, and I can honestly say that I looked forward to them each week. She was very understanding of my 'Post-COVID’ mental health issues, a great listener and even better at helping me to unravel my psychological trauma.
“I can now function a lot better from a mental health perspective. I have been shown really useful coping strategies that help me deal with my negative thoughts. However, only time will tell – and I do have the option of a referral again if needed, which is very reassuring.”
Cheryl caught COVID in November 2020, and was acutely unwell for around three weeks. Following this, she continued to experience symptoms of Post-COVID Syndrome, which included chronic fatigue, brain fog, headaches, muscle pain, breathlessness, and inability to get warm. She said:
“Long COVID is an isolating, lonely and terrifying illness. The physical, cognitive and emotional symptoms mean you can no longer trust your body or your mind. You are unable to engage in usual activities, so you become disconnected from friends, family, the outside world. This inevitably has a significant impact on mental health and wellbeing.
“The Post-COVID Syndrome service was so easy to access, and being able to self-refer makes it particularly accessible. My initial assessment happened quickly, and this was on the phone, which again this makes the service more accessible. The assessment itself felt holistic and compassionate. I felt understood and acknowledged, my experience validated. This followed through to my actual therapy sessions which I chose to access via video link. Being able to access therapy from the comfort of my own home was a huge relief.
“The support I received was invaluable. My sessions helped me develop a personal understanding of why I may have been vulnerable to developing long COVID. I used the sessions to find new ways of more effectively caring for myself, asserting myself, putting boundaries in place, and lowering my expectations of myself.
“I had space to share the array of feelings living with a long-term health condition evokes – anger, frustration, sadness, grief, guilt. I also had an opportunity to reflect on what lessons I could learn from having suffered with this debilitating condition.
“This process was made easier for me because of the fantastic therapist I had. She worked in an incredibly person-centred way – truly listening to me and my experience, not trying to fit me into a box and telling me what I should or should not be doing. She was kind, compassionate, thoughtful and knowledgeable. I felt expertly guided through a necessary part of my recovery journey.”
Dr Dale Huey, Consultant Clinical Psychologist and Strategic Lead for Primary Care Psychological Therapies at GMMH said:
“Around 12% of those who have been infected by COVID in the UK report ongoing symptoms from 12 weeks of infection. Anyone can be affected, regardless of their age, gender or health status prior to infection.
“Living with Post-COVID Syndrome can have a significant impact on both physical and mental health, and affect how fully people are able to live their life. It is so important that those who are struggling are able to access timely support which is right for them and their circumstances.
“We are so pleased to have already supported so many people in their recovery journey, but we know that many more could still benefit from the help available. If you or someone you know is experiencing ongoing symptoms following COVID infection - which could include sleep problems, mood changes, difficulty thinking and concentrating, and tiredness or fatigue, alongside problems with breathing, headaches, and joint or muscle pain – please don’t hesitate to reach out for support.”
The service is open to adults registered with a GP in the areas of Manchester, Salford, Trafford, Bolton or Wigan, alongside all GMMH staff. It accepts self-referrals or referrals from professionals such as GPs.
People living in Bury, Rochdale, Oldham, Stockport, Tameside and Glossop can also access a post-covid service run by Pennine Care NHS Foundation Trust.
Case Studies
Danny’s Story
Danny’s experience of Post-COVID Syndrome began following a period of hospitalisation due to COVID-19 infection. He said:
“When I first contracted COVID, it felt like a normal flu virus. But on around day eight, things took a turn for the worse and I was rushed to hospital.
“During my time in hospital, I was placed in an induced coma due to COVID Pneumonitis, a collapsed lung, and lots of other health issues due to the effects of COVID-19. I ended up being intubated for 42 days and lost around 95% of my muscle mass. I lost my ability to stand up and walk. I received excellent care in ICU, and then with the help from my Physiotherapist on the recovery ward, I was able to push myself to take a few steps, and eventually go home to my family.
“Returning home was an amazing feeling, but it was just the beginning of my journey with Post-COVID Syndrome. I have had numerous physical health problems - such as loss of mobility; debilitating fatigue; and muscle, joint and bone pain - and I am still suffering a lot with my physical health.
“I have also experienced many mental health challenges. First was the realisation that I had nearly died, and how that would have affected my family. I also battled with thoughts of ‘why me? Why did I survive when many others who were in the same situation did not?’
“Being in an induced coma was also very traumatic, as I experienced visions and delirium. Back at home, I experienced flashbacks, and I tried to block them out of my mind, which just made my anxiety and overall mental health and wellbeing worse.”
Danny reached out for support from GMMH’s Post-COVID Syndrome Service after being given information by one of the clinicians who had helped him at ICU. He said:
“After going online to make a self-referral, I was phoned back for an initial conversation about my specific needs, and was then assigned a Cognitive Behavioural Therapist who best suited these needs.
"My therapist was brilliant from day one to completion of our sessions, and I can honestly say that I looked forward to them each week. She was very understanding of my 'Post-COVID’ mental health issues, a great listener and even better at helping me to unravel my psychological trauma.
“I can now function a lot better from a mental health perspective. I have been shown really useful coping strategies that help me deal with my negative thoughts. However, only time will tell – and I do have the option of a referral again if needed, which is very reassuring."
Cheryl’s story
Cheryl caught COVID in November 2020, and was acutely unwell for around three weeks. Following this, she continued to experience symptoms of Post-COVID Syndrome. She said:
“Following COVID infection, I continued to experience symptoms, which got progressively worse. These symptoms included chronic fatigue, brain fog, headaches, muscle pain, breathlessness, and inability to get warm. I was unable to work for over a year, before more recently starting the process of a phased return.
“Long covid is an isolating, lonely and terrifying illness. The physical, cognitive and emotional symptoms mean you can no longer trust your body or your mind. You are unable to engage in usual activities, so you become disconnected from friends, family, the outside world. This inevitably has a significant impact on mental health and well-being. So it is impossible to help someone recover from long covid without acknowledging the overwhelming impact on physical AND mental health."
Cheryl first came in contact with the GMMH Post-COVID Syndrome Service in April 2022. She said:
“The service was so easy to access. Being able to self-refer makes it particularly accessible. This feels very important given the usual obstacles people with long covid face – medics seeming not to believe reported symptoms, having to go through numerous tests to access long covid clinics, and feeling dismissed by services without ‘proof’ of long covid.
“My initial assessment happened quickly, and this was on the phone. Again, this makes the service more accessible for people with long covid as even getting out of the house can be a challenge, and getting to appointments will almost definitely exacerbate symptoms because of post-exertional malaise (PEM) – a key feature of long covid.
“The assessment itself felt holistic and compassionate. I felt understood and acknowledged, my experience validated. This followed through to my actual therapy sessions which I chose to access via video link. For me, getting to a weekly face-to-face appointment would have likely resulted in numerous unavoidable cancellations, as some days I am too exhausted or in too much pain to leave the house. Being able to access therapy from the comfort of my own home was a huge relief. I could also lie down immediately after the sessions which I often found exhausting, but always worthwhile.
“The support I received was invaluable. My sessions helped me develop a personal understanding of why I may have been vulnerable to developing long covid. I was under so much stress which I just did not see at the time of contracting covid. For me I believe my body was struggling but I was completely unaware, and COVID-19 was the straw that broke the camel’s back.
“I therefore used the sessions to find new ways of more effectively caring for myself, asserting myself, putting boundaries in place, and lowering my expectations of myself.
“I had space to share the array of feelings living with a long-term health condition evokes – anger, frustration, sadness, grief, guilt. I also had an opportunity to reflect on what lessons I could learn from having suffered with this debilitating condition – the increased empathy I now have for other people’s struggles, the value of living life at a slower pace, learning what is truly important and how to live life by my values, not other people’s.
“This process was made easier for me because of the fantastic therapist I had. She worked in an incredibly person-centred way – truly listening to me and my experience, not trying to fit me into a box and telling me what I should or should not be doing. She was kind, compassionate, thoughtful and knowledgeable. I felt expertly guided through a necessary part of my recovery journey.”
Cheryl is now keen to raise awareness of the Post-COVID Syndrome Service, and encourage others who may be in a similar situation to reach out for support. She said:
“People with long covid have reported over 100 different symptoms. Therefore, everyone’s experience is different. For some they are completely debilitated and housebound, others may have milder symptoms which come and go. However, whatever your symptoms are, if you have long covid, or even if you think you might have long covid, please reach out for support. Please do not suffer alone. You do not need to. You deserve help and support just like anyone else. Make a self-referral to the Post-COVID service. What have you got to lose? Let the person assessing you help you decide if the service is right for you. Even if it is not, they may be able to point you in the direction of something else which could be helpful.”
