Long Covid: A catalogue of shame

Long Covid: A catalogue of shame

This week’s blog is written by Roger Kline (@rogerkline).

One in nine nurses left the NHS last year. One Department of Health and Social Care policy will make things worse.

The reality for nurses and midwives with Long Covid

Below are extracts from 31 messages from NHS nurses and midwives with Long Covid detailing workplace experiences. You decide if this is how we should treat those who rushed to help others and were injured themselves.

“I am still on phased return week 8 now but need to use annual leave for times not working and my concern is what I am going to do once all annual leave is used up”

“I returned in April on 6 week phased return to 18 hours. Their plan was a 6 week full time course after 4 weeks as no resources to offer me bespoke retraining that others have (successfully) had. Phased return failed (obviously) after 4 weeks + have been awaiting a new plan since then but heard nowt. I want to return to my 18 hours + feel optimistic this is doable. I’ll let you know.”

“I’ve been left oxygen dependent after being ventilated. I’ve been doing management part time. It’s been over 2 years and I’m slowly getting used to the fact that I won’t get back clinically. Now they need my clinical hours back for the unit which I can understand but they are creating a job for me to job share and reading the JD it’s something I’m not interested in and will mostly be new to me and I haven’t got the mental capacity to retain new facts. it’s almost like they are waiting for me to say I’m going so they don’t have to push me. It’s a real slap in the face”

“I didn’t really know I had long covid. Was off for 3 months last year. I felt bullied to go back. Occi health absolutely useless!  ! had phased return for 8 weeks instead of 6 only coz union stepped in. Now on sick again and don’t know how long for. Since had Long Covid confirmed by gastro consultant so it explains a lot. Blaming hormones and my b12 deficiency and the exhaustion is real. Been taking tablets for both the other things and not making any difference coz of Long Covid dragging my energy down very low. Can’t do my job at  mo anyway coz they want so much work I just haven’t got the energy.”

“NHS for 40 plus years and no idea what or how will support myself.”

“Living” with Long Covid under threat of redundancy….

“I got a phone call yesterday from my manager saying new policy starts tomorrow (although I haven’t seen it yet). You will now be on normal sick leave so you will be aware you will be going onto a stage 1 capability. I asked timescales for this but she was unable to say (she will know after she sees guidance and speaks to HR). I really wish she had done this first as my stress levels are through the roof.”

“Disgraceful isn’t it the process begins to get rid of us. I got my 2nd absence meeting within a month of the first and was told if no return they would finish me up on Ill health capability.”

“I know after 32 years’ service which doesn’t make me any more important than anyone else we all put ourselves and our families at extra risk and are paying the price through ill health and now our jobs.”

“Really hard week this week. Have tried to increase my hours (probably too quickly) due to needing redeployment and have ended up emotionally overwhelmed. Small problems have felt overwhelming and insurmountable, to the point I had a (fairly) public breakdown at work today.”

In the process of applying for ill health early retirement

“I have been told repeatedly by work to pursue IHR. I’m only mid40s. Long Covid has left me with persistent chronic health conditions (POTS, breathlessness, cognitive dysfunction, Reynauds, neurological issues, hemiplegia, CFS/ME). I’m awaiting a decision, but feel very anxious I will not be awarded it. The information has been so sparse. I have no idea how much I will be awarded but it seems highly unlikely I’ll be able to live on it. I was a Senior Nurse, by life has been ruined, I have studied & worked hard for years to be where I was-now I have no future earning potential. I have been declared too disabled to work, but am apparently too well to claim PIP. We sacrificed everything, put our families through years of long Covid hell, for this.”

“Been off work since November 2020 after contracting covid at work in the April. Continue to have fatigue, PEM, muscle & joint pains, brain fog etc. OH advise not fit to work in any capacity, HR now pushing me to apply for ill health retirement, advised if this is not agreed and I remain unfit for work then they will have to dismiss me under capability, so angry that after 23 years service that I’m being treated this way.”

Been told I’m being sent down capability route. My fatigue, brain fog and speech problems have meant the OH doctor has consistently said I’m not fit for work. He is aware that no one with Long Covid has been able to claim their pension and he has told HR. He is trying to hold off as long as possible and is asking my OT from Long Covid Clinic for a report and wants her to attend any meeting they have. HR have acknowledged the lack of Pension being paid but say this is still the right route to take for my mental health and so I can access money I’m entitled to. How can losing my livelihood and therefore my wages benefit either my finances or my mental health?”

“I have applied for ill health retirement and this was turned down basically saying my health was good before long covid in November 2020, and my heart disease and asthma which I have been diagnosed with after long covid will or should be controlled and may enable me to return to work. I have appealed this decision as I suffer from several other illnesses that were not taken into consideration with their decision. I was fully supported by my manager, HR and Trust doctor to be eligible for ill health. The whole process is having such a negative effect on both my physical and mental health. I have worked for Belfast trust for 36 years.”

“They said in my last meeting – we need to ask if you would take Ill health retirement. In next breath – don’t know if you can with long covid.”

“My Trust are desperate for me to take ill health early retirement. I have worked for 30 years and am now a senior nurse. Our occupational health doc is clear the trust failed to pout proper safety measures in place. They can give me no assurance I will be successful and even if I am I completely miss out on the enhanced pension at age 55 that our family finances have been built around . I feel really really badly let down.

Experiences applying for the NHS injury allowance

“I was advised to submit an Injury claim by my Union rep (RCN) which was submitted in Mid July. I meet all the criteria for this like many others, and my ward manager had also stated on my RIDDOR form that I got Covid-19 from a positive patient ward, where numerous staff went off at the same time with the virus. There were numerous IR1’s (datix) numbers listed for each staff member who had gone off sick documented on my RIDDOR form. My ward manager and HR both ignored mine and my Union rep’s emails asking for clarity/feedback on the decision as my Union rep had been made aware a decision had been made. I was able to find out that the Injury allowance had been declined when I called payroll to ask why my emergency annual leave to top up my pay hadn’t gone in. This too had been denied and my ward manager had failed to inform me, despite numerous attempts by myself and Union rep to contact him and HR. Its worrying and scary that such a strong case and one that meets all the criteria for an injury claim can be denied. “

“Injury allowance claim completed months ago, HR have refused to recognise it as I was being paid on Covid pay. My RCN rep has now asked for an answer as my pay will be down from the end of September. So far we have had no response….”

“Encouraged by RCN to put in claim as I would get 85% wages. Trouble is very few test cases as all been on full pay till it ended July. CARDIFF AND VALE did a pay extension application that I was awarded but found out it was 6 weeks but I also lost 8 weeks annual leave and now fighting to get the max of 4 paid as a wage extension and I’ve taken 4 weeks from this year to give full pay Sept. I don’t know if I will get industrial injury claim I was told in all probability I got covid at work due to shifts I was working and poor PPE plus no contact with poss case outside work. All lots of forms and waiting”

Experiences with phased returns

“My 1st return post covid in Feb 21 was 4 days, I was told to use A/L to build up my hours. I had a bacterial infection May 21, 3 weeks off sick and a fit note from my GP to work reduced hours, my Trust supported this. I was really struggling and had a big relapse July 21. I eventually got a diagnosis of long covid after seeing a Respiratory Consultant. I accessed covid rehab and Occi Health gave me a 10-12 wk phased return. An OT from covid rehab drew up a bespoke phased return which I gave to my employer. My manager has been great, supportive and flexible. I can take breaks as I need. I have received full pay throughout my phased return. I carried over 4 weeks A/L and will be taking one day a week from now on as A/L to support the NERS programme which covid rehab have referred me to.”

“I was off with Long Covid for 25 months. Occupational Health suggested a 6 month phased return and it was agreed. Starting with a one hour visit for a cup of tea. I did eight weeks of two hours per week, doing Mandatory training. Then 4 weeks of two four hour shifts shadowing. It was then arranged for me to up the hours to 20 per week.. Management have been very supportive so far.”

“I am new to having long covid (just hitting 14 weeks) I tried to return after 8 weeks and managed 4 hours and have had a big decline since then. My job has told me I can use my annual leave for my phased return (great…) but as I am currently spending 95% of the day in bed I don’t think it will be for a while….feel very sad and disappointed.”

First time round I had 7 weeks sick leave then tried and failed on a phased return at work so immediately started phased return remotely reviewing patients and after 2 months came into work and did same at desk for a few weeks before progressing to ward work over a number of weeks before finally going back full time including additional weekend work. Hours ended up increasing beyond full time with many unpaid hours overtime due to lack of staff. Have felt fairly supported but difficult given poor staffing and pressure of work on colleagues. Equally though I have worked there for 19 years. 17 years of which I had no sick leave and did many, many hours of unpaid overtime.”

“I caught covid at work after being redeployed to a ward in first week of April 2020 where we did not have adequate PPE or knowledge about this virus. I had 3 weeks off sick and then came back to work in May 2020 and carried on having debilitating symptoms all summer. Eventually in Sept 2020 I realised this was Long Covid and just couldn’t work safely,”

RIDDOR reporting

“I definitely caught Covid at work. It was just before the first lockdown. I hadn’t been anywhere else. I subsequently passed it to my family. 4 of the 5 of us have had debilitating Long Covid since March 2020. I have been told I could have got it from anywhere so no RIDDOR requirement. I’m a respiratory nurse. There was no PPE at the time. I’m now disabled & am being “let go” from work”.

“I caught Covid in work on a Covid positive ward in March 2020 and again at the end of May 2020. My second infection resulted in multiple physical issues/disabilities which some have continued to worsen as time has gone on.

“My ward manager documented on my RIDDOR report that I caught Covid-19 on the ward where patients and staff alike were testing positive for the virus. I believe a large percentage of staff went off also during the May surge as my ward manager listed all the further staff IR1’s for covid sickness on my RIDDOR form. My union Rep (RCN) advised me to fill out the Injury Allowance claim that would top up my pay for when I went on to half pay. This was submitted in mid July. Both my ward manager and HR ignored my emails and union Rep’s emails in regard to the outcome once we were told there had been a decision. I found out that the claim had been ‘denied’. I am 38, have no pension as I had to opt out due to debts. My claim should not have been declined, I met all the criteria, including my ward managers comments. It is beyond belief we are being treated this way, so cold and callous after we gave our everything to help others.. ultimately our health. I feel I am on the precipice of losing everything.”

“When I spoke to occupational health therapist in March 2021, after I caught covid January 2021, he put in his report that a Riddor should be completed. I spoke to him again August 2022 and was advised that a report had not been made. So again he has written in his report that Riddor needs to be completed. I have applied for industrial injuries benefit, I’m yet to hear if my application for the benefit has been successful.”

“My trust had a stipulation that a positive test was required for a RIDDOR. We had no access to PPE unless directly dealing with a known positive patient. Staff dealing with patients were then coming out and mixing with other staff without PPE. At the time of becoming unwell tests were just being introduced and access to them was strictly limited to continuous cough and/ or fevers so I was denied a test.”

“I asked my manager if she could submit a RIDDOR the year after I caught Covid (Sept2020). She advised me she thought RIDDOR’s weren’t being completed and would get back to me. She never did. I then asked the Head of Health and Safety (twice by phone, once by email). He said it was trust policy at that time not to complete RIDDOR’s but would check this out. He never got back to me either, I told both of them I wanted one submitting in case Long Covid was made an industrial disease in future, in case I couldn’t work again. I was told the Trust would be nervous of my request in case I was looking for a personal injury claim.”

“I completed a RIDDOR form and sent it off in June 2020-as a result of contracting covid at work. Two other members of staff got it and we were sharing a tiny office and computer station. No masks , no ventilation in office. I requested work submitted one too. After a years delay the trust lawyer wrote a letter saying they would not be submitting a RIDDOR as on balance not enough evidence I got covid at work on 31st March 2020.”

Returning to work

“I wish that this illness could be visible. I was an ambitious Clinical Nurse Specialist, happy to redeploy during the initial wave of Covid, worked on the Covid Assessment ward initially, then redeployed again to a Covid negative ward, this is where my nightmare began during a massive outbreak on the ward. Really unwell for four months, Long Covid not much of a topic at this time. My fixed term contract as a Nurse Specialist was coming to an end, this would never have been an issue for me pre Covid. I had to find a new job when I was still very unwell. Could not do any physical ward work or anything mentally tasking, I down-banded and took a job with the swabbing team. Pushed myself to the extreme and had a massive relapse and have not been able to return to work since. You can’t see this disability and you can’t treat it, therefore in many eyes it doesn’t exist. It’s a huge insult for our injuries not to be reported as a RIDDOR. We have been left debilitated with no one to turn to. My half pay will just about cover my Gas and Electricity bill this winter and by Christmas I will have no pay at all”

“I managed to return to work successfully on my 2nd phased return. My line manager is the HR Director and was initially supportive of the recommendations from Occ Health & my GP. I began on 2 then 3 days then moved to 4 days, back to 3 then back to 4 over the last 8 months. I sensed a few months back they were getting rather tired of me not being better yet-workload and demands increased, asking how I was started to stop, no more check ins on my progress or treatment. When the announcement about pay came through their PA messaged me to ask if I was back to full time. Shortly after this a sickness review was put in. At the review I was talked at for 10 minutes-they explained that various options of flexible working without dropping my pay had been considered (without my input) but all options made them ‘uncomfortable’.”

“I wasn’t asked how I was, what I needed, what I was thinking or proposing. I feel my relationship with my line manager has broken now, I don’t feel valued, I know I’m in a better position than most NHS staff but I feel like I’m in the way, not doing as expected, that my condition is an inconvenience. I am worth less than I was pre Covid. There has been no appreciation of the massive leaps forward I have made or the huge trauma and changes to my life. I’m looking to leave as soon as I can.”

What needs to happen now?

“Ensure that compassion is central to the care we provide and respond with humanity and kindness to each person’s pain, distress, anxiety or need.”

These case studies provided above suggest it is too often absent as employers implement this Government’s policy.

Roger Kline (@rogerkline) is Research Fellow, Middlesex University Business School

Immense thanks to those who shared their experience with the excellent Long Covid Nurses and Midwives Network and to the indefatigable Alison Twycross who you can follow at @alitwy.

Author: Alison Twycross PhD RN

Chair - Supporting Healthcare Heroes UK; Editor-in-Chief - Evidence Based Nursing; Former Deputy Dean and Professor of Children’s Nursing

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