Given the pandemic’s impact on all aspects of our lives, at times it’s been easy to forget that what we’re living through is fundamentally a health crisis. Those who’ve lost loved ones, or been affected by the disease
The very wide range of symptoms associated with Covid-19 means the lived experience of infection is a deeply personal one. From breathlessness to rashes, mental confusion to renal failure – no two people’s experience of the virus is the same. But a growing number report long term effects. No one yet knows how serious the “Long Covid” phenomenon will be, but the NHS has already established a rehabilitation service for those struggling to recuperate months after initial infection.
A Woman in her 20s and her partner from London, had mild symptoms at the start of the pandemic and wrote about how fortunate she has been:
“We have been really lucky! We both had symptoms early on, were relatively mild and improved within a fortnight. We kept our jobs, didn’t take a huge financial hit. We’ve been really happy together at home, with our dog and no dependents needing home schooling!”
However, now lockdown is starting to ease, she feels more anxious as she sees crowded beaches and protesters gathering. The uncertainty around this has affected her mental health:
“Losing a huge amount of trust in the people making the decisions and watching them ignore the science has caused me to become increasingly anxious and noticeably more dependent on my husband.”
“My husband and I both had a severe illness in Feb/Mar which we realised must have been Covid19. We did not seek healthcare until my husband coughed up blood so 111 advised us to go to A&E.”
Woman, 50s, South East England
“My partner’s father had Covid 19. The whole experience of him being in hospital was extremely difficult for our family. We appreciated the work of individuals within the NHS but the operational side was so constrained by lack of testing that we lost faith in the safety of hospitals.”
Woman, 40s, South West England
“I have had the virus. I caught it back in March. I feel like I was thrown under the bus with little support except to stay at home which I did. There have been no follow up checks on my physical health.”
Woman, 40s, North East England
“I have not seen my husband since the middle of March, when his care home was locked down without prior notice. Since then, he has contracted the virus and has spent the last three weeks in hospital. He is now negative but very much weaker and it is unlikely he will recover his previous level of mobility.”
Woman, 70+, Scotland
People still have heart attacks, needs cancers diagnosed and treated, and have babies during a pandemic. Yet A&E and hospital attendance have been radically reduced as people are reluctant to burden health services during this crisis or scared of contracting Covid-19 in health service settings. The impact could be catastrophic as we create a time-bomb of undiagnosed cancers and other chronic illnesses that will accumulate and lead to future excess deaths. Many people are experiencing anxiety and depression – worrying about the risk of catching Covid-19, the impact on their finances, or the wellbeing of their children.
One respondent, a Woman 40s in Scotland, lost her father to cancer in May. He was diagnosed just before the lockdown and she feels the family were failed by the NHS with the pandemic being used as justification for providing no support.
“It was a deeply traumatic experience being left to be our fathers palliative carers with no support whatsoever and it showed up just how Medieval our health system has been allowed to become here… When Dad was declining quickly in his last 3 says he was offered a place in a hospice but no visits allowed. We refused.”
While the family were the only carers for their father, lockdown rules made this task much harder.
“In addition we had to worry about being stopped by the police when we did drive to take supplies or make a garden visit. Supermarket deliveries were another huge source of stress and the authorities here delayed 3 weeks after the rest of the UK to pass details of the vulnerable to the stores making deliveries.”
She believes the pandemic has exposed the state of the NHS in Scotland which has impacted the population’s quality of life.
“My partner has had some crucial appointments cancelled at the hospital and dentist. They have been rescheduled for August, but this has left him suffering for months, sometimes in quite a lot of pain.”
Woman, 20s, South East England
“I am of an age where my health is changing in minor ways. Previously I would have discussed all this with my local surgery, but I have not wanted to bother them. I’m no longer sure what to worry about and what not to worry about, and am still unsure as to when to resume my relationship with my doctor.”
Woman, 70s, East of England
“I worry that people aren’t seeking attention when they need it. It took me and my sisters 10 days to persuade my Mum to call the doctor when she was ill as she was so scared she’d have to go to hospital and catch Covid.”
Woman, 40s, North West England
“I had already waited 15 months of trying to get doctors to take my stomach pain seriously to get a CT scan referral in late March (suspected surgical bowel adhesions) and it’s been rescheduled to August. I’m terrified it will be delayed again, or even cancelled altogether.” Woman, 40s, London
“I have severe anxiety about going out of the house now. I’m going to struggle to get back to any sense of normality and I cry about it often.”
Woman, 30s, East of England
Awareness of the social care sector and workforce has increased; the scandal of the high number of Covid-19 deaths in care homes has shocked and angered the public. Did the Government’s “protect the NHS” strategy succeed at the cost of the social care sector? Many believe the pandemic has created an opportunity to re-evaluate our priorities and reform social care, with greater parity of esteem between it and the NHS.
One woman in her 50s from North West England, said she has worked in the NHS and social care for many years. For her, the pandemic has confirmed what she already knew about how social care and its staff were undervalued, particularly when compared to the NHS.
“I was fully aware of the injustices within social care and the way social care sector and it’s hard working staff, who contrary to what people are led to believe by the government and the media are NOT unskilled staff, treated as inferior to NHS staff. The majority of carers within the social care sector are in fact, far better qualified than HCA’s within the health service. The reason they are called an unskilled workforce is purely to enable their wages to be kept mostly at minimum wage.”
She feels that care staff have very stressful jobs working with many complicated illnesses, end of life care, dementia and psychiatric illness, and that many NHS staff would not be able to cope with the jobs social care staff undertake. She finds the inequality between the way the NHS is treated compared to social care galling:
“I am sick of it all being about the NHS. I have worked in social care with ‘health proffessionals’ who haven’t lasted a couple of weeks within the social care sector in the community as they couldn’t cope with the stresses and pressures carers have to deal with, day in day out in, what is in this country is a thankless job. A job you are often embarrassed to admit to doing. That’s how worthless social care workers have been made to feel in society. This has to change!”
“There must be a cross party approach to health and social care. Party politics has led to inertia and short sighted policies.”
Man, 60s, South West England
“The emphasis on protecting the NHS was met at the expense of the Social Care Services.” Man, 70s, North East England
“Generally there is a radical opportunity to rethink the role of Government as we come out of lockdown. There needs to be an honest conversation about NHS and social care funding. Taxes probably need to be increased.”
Woman, 50s, South East England
“Social care is always forgotten and way underfunded, yet the NHS wouldn’t exist or function without it. Again it’s been brushed over and swept under the rug. There needs to be a huge change to the social care system.”
Woman, 20s, South East England