Meeting the healthcare needs of chronic patients - lessons to learn from the COVID-19 pandemic

Being patient means ‘to wait’ or ‘a person’s ability to wait something out’. Many kidney patients are used to waiting. Six times a week those on dialysis have to wait to be picked up to go to or from their life-maintaining treatment, wait for their turn to get onto the dialysis machine, wait until the hours tick by till it is over. Those who can go onto the transplant waiting list wait until their chance of a transplant comes up, which might be tomorrow or in five years’ time, or never.

When the pandemic started, normal life was suspended, and the fear and uncertainty which many people were experiencing took its toll on those with long term chronic conditions. By the time the government told everyone to ‘stay at home to save lives’ many with kidney disease had already decided to stay home, having been advised to shield (self-isolate) and stay away from other people, even those in the same household. Although the shielding guidance was not a direct instruction, it was taken as such by many – who then stayed indoors until new advice that they could go for a walk was given in June.

Kidney Care UK, the UK’s leading kidney patient support charity, was immediately faced with a rapid increase in demand for our services, whether for advocacy or counselling, up by one third from the previous year. There was a clear hunger for coherent, timely and accurate information.

To address this we created a webpage which has been updated, sometimes daily, over the past nine months as government guidance changed across the four nations of the UK. We also conducted two major COVID-19 experience surveys in May (1,211 respondents) and September 2020 (860 respondents). Patients and their families told us of their loneliness and stress, with one in four reporting worries about getting food in the first few weeks. The first ’shielding’ period lasted from March until August and people relied on friends, volunteers, government food boxes and, for those with digital access, eventually being able to get online shopping slots.

In May, 7 out of 10 patients told us that their care had been disrupted, some being reduced to twice weekly dialysis and others had vital check-ups cancelled. The transplant system was stopped in most parts of the country, with kidney transplants reduced by 800. This meant that some had to go onto dialysis – 20 people every day develop kidney failure. Very sadly some people told us that they felt they could not ask their kidney teams for help, as they knew they were busy.  In September, 49% of patients told us their care was still disrupted and at the time of writing we are experiencing a second surge, with surgery being again cancelled in some regions.

In both surveys, patients told us that their mental health had been affected (40% in May and 33% in September). Self-harm, domestic abuse, challenging behaviour in dialysis units are reported through our counselling services and colleagues. In November a further lockdown was announced in England and clinically extremely vulnerable people advised to shield, again. In truth, many have been isolating themselves since March, hardly seeing family members.

Our most recent survey has highlighted the financial impact of all of these restrictions. A number have lost their jobs and many (63%) reported that they were worried about going back to work with one in five employers not supporting them to ensure their workplaces were COVID-safe. Recent advice to shield again has not been met with adequate financial support. State support, where available, is about one-quarter of the average annual wage. Some have felt no choice but to go to work. With schools reopening in September, parents and children are stressed as many pupils are sent home because classmates test positive; families with parents with kidney disease are not able to socially distance from their children.

By now, data shows high levels of harm on those who are infected, with surveillance reports indicating that last week (ending Nov 11^th) 35 kidney patients died with COVID-19 and overall 1,500 have sadly passed away.

For policymakers and healthcare teams we have some recommendations. First, please do not let patients think they have been abandoned – call, email or write to them so that they can have some choice with their care plans. Encourage them to get their check-ups and explain what you have done to make care safe. However, do not make health services only about COVID-19. Also, acknowledge the mental health impact and signpost to help.

In addition to this, policymakers should also provide financial support so people do not have to choose between lives or livelihood – it’s not forever and this is a relatively small part of your population. Make your communications clear, evidence-based and timely – and work with charities like ours who provide a lifeline in these most difficult of times.

Finally, once a COVID-19 vaccine is available, governments should ensure that clinically extremely vulnerable people are granted priority access.

And to everyone, please have a bit of empathy for those who have already had to go through so much to survive and have lived in the shadows for all this time.

Until then, patients are still waiting.