Coronavirus: Transplants on hold, cancer surgery in limbo, and mental health crises dismissed: the forgotten victims of Covid

TRANSPLANT

Bruce at home in Elgin with parents Tony and Tracey

FOR 10-year-old Bruce Melvin, 2020 should have been the year of a life-changing kidney transplant.

Now the Aberdeenshire schoolboy is in limbo with no idea when the operation will go ahead.

Coronavirus has put a stop to all but the most urgent transplants as hospitals have been forced to weigh up the risks of potential exposure to the bug in patients who would have to take immuno-suppressing drugs to prevent organ rejection.

Bruce, who developed chronic kidney disease following a viral infection when he was four, began deteriorating rapidly last year and was admitted to the Royal Hospital for Children (RHC) in Glasgow from June until August.

"They told us in March last year that they reckoned he might have about two years before his kidneys deteriorated to this stage that he would need dialysis, but then everything just went berserk," said his mother, Tracey Stevenson.

Blood tests revealed that his father, Tony, is a match, but transplants from 'living donors' are considered elective surgeries and paused across the NHS.

READ MORE: No new confirmed Covid patients admitted to ICU for at least 10 days in Scotland 

Although Tracey, 49, and Tony are separated, the Covid crisis means that the whole family - including Bruce's 12-year-old sister Sarah and brother Alfie, seven - are shielding together in the same house.

Tony has been furloughed from Tesco due to the danger of infection and Tracey, a beauty therapist, has also had to suspend her business during lockdown.

For now Bruce continues to make the three and a half hour journey by taxi from Elgin to Glasgow to undergo dialysis at the RHC three times a week.

"We're absolutely gutted because we thought come this time next year Bruce would be back on the mend and able to have quite a normal life, to attend school properly - but we're just basically left on tenterhooks again.

"We don't know when it's going to happen, but at the moment dialysis is keeping him safe.

"As much as we really want him to have this kidney now, I don't think putting himself and his Dad at risk would be a good option. It would be stupid.

"Bruce copes okay, but he's started to get frustrated and irritated. His behaviour at the moment isn't the best but they're saying it's possibly the way he's trying to deal with everything that's going on."

The family has been supported by Kidney Kids Scotland. 

The charity's manager, Sheena Dunsmore, said it was in touch with many patients whose transplants have been disrupted. 

She said: "We're a small charity facing uncertainty, but we're here to support however we can."

A Scottish Government spokesman said: “We are working with transplant units to ensure patients in need of a life-saving transplant can receive it.

“While small number of urgent transplant operations have continued to take place, we expect the number of patients undergoing transplant operations to be able to increase in the coming weeks and have been having regular discussions with Scottish transplant units on this.

“We are considering how NHS boards will begin to restart services, such as transplants and elective procedures.”

CANCER

Lesley Stephen at home in Edinburgh

WHEN married mother-of-four Lesley Stephen was told she had months to live in 2015, she headed off to New York with her family on what she expected to be their last ever holiday together.

The former communications consultant, from Edinburgh, had been diagnosed with advanced breast cancer in March 2014.

By October 2015 she had exhausted the standard NHS treatment options and her oncologist told her it was time to "get my affairs in order".

"I was obviously devastated," said Lesley, 54. "We went off to New York with the kids on what I thought would be the last family holiday. I was pretty ill at that point - there was a lot of cancer, mainly in my lungs - so when we came back my oncologist said 'you can either have one final line of chemotherapy or there's one place left on a clinical trial in Glasgow at the Beatson'.

"I was so lucky - I was willing to go almost anywhere if it might extend my life."

Lesley was one of only 40 patients worldwide to take part in the Phase One trial for epertinib, a breast cancer drug developed in Japan.

READ MORE: Cancer drug trials on hold until 2021 due to pandemic fears 

She also had an unusually positive response to it - what is known as a "super-responder".

Her cancer went from been terminal to stable, and more than six years on from her original diagnosis, with her children now aged 11 to 20, she enjoys "a pretty much normal quality of life".

She also praises "amazing" support from cancer charity, Maggies.

However, over the past year the disease has begun to push back against the drug and grow.

On May 8, her oncologist told her they needed to operate to remove a tumour in her lung but - due to Covid - the surgery is on hold.

Cancer patients are at higher risk of serious complications and death if they contract the infection.

Some less invasive procedures, such as skin cancer removal, are being performed for the NHS in private hospitals.

But major surgery that requires intensive care on standby has to take place in acute hospitals, and these have been considered too Covid 'hot' for all but the most urgent cancer operations.

"I have no idea when it will happen," said Lesley.

"I would say they maybe need to look at each cancer patient as an individual. Apart from this I'm pretty fit and healthy - I just went for a 6km run this morning.

"The risk of it not going ahead could be greater than the risk of me getting the virus.

"The longer these delays go on the worse the outcome for all non-Covid patients.

"It's not that we want any sort of preferential treatment, we just want equal treatment."

Maggie’s chief executive Laura Lee said: “Living with cancer just now means intensified feelings of anxiety and fear as people are cut off from loved ones through shielding and have the added worry of the impact of the coronavirus on their treatment.

“It has been particularly difficult for those with limited time who tell us that they feel like they are living in limbo, watching their life clocks tick away unable to spend quality time with loved ones or do any of the things they might have hoped to do.”

Tracey Gillies, medical director for NHS Lothian, said: “Treatment and surgery for cancer has continued for the most urgent of cases throughout the Coronavirus pandemic however, additional considerations have been given to the risks for patients that require surgery or chemotherapy during this outbreak.  

"For instance, some patients may have moved to a less frequent treatment cycle of chemotherapy in order to minimise the number of times they have to visit the hospital. 

"All patients requiring surgery are assessed and scheduled based on the urgency of their case to avoid unnecessary risk.”

MENTAL ILLNESS

Julie believes routine mental health referrals are being downgraded during the pandemic (NB: generic image)

THERE have been a flurry of public health messages about maintaining mental wellbeing in lockdown.

But, Julie*, who lives alone in Glasgow, says those already in the grip of mental illness have been sidelined.

The 49-year-old has been signed off work with depression and anxiety since late 2018, but her condition started to deteriorate in October.

She said: "I now have severe claustrophobia whereas before I just didn't get in lifts. There's a level of claustrophobia that you can live with, that doesn't affect your life, and once it goes beyond that you don't have a life.

"By February I wasn't going out, I wasn't seeing friends, and at that point I basically felt suicidal. I had had a massive deterioration in my mental health which was already quite poor.

"I was referred to psychology as urgent by my GP, but my referral was immediately downgraded to routine.

"I've had three urgent referrals now and they've all been downgraded to routine and rejected, and I was discharged in April without any treatment."

READ MORE: Number of excess deaths during Covid crisis running 20% lower in Scotland than England & Wales 

In March, non-urgent outpatient appointments - including for counselling and cognitive behavioural therapy - were paused across the NHS due to the pandemic.

Julie believes her referrals were repeatedly downgraded from urgent to routine in order to remove her from waiting lists.

"Mentally ill people were still ill and our services were withdrawn. I think I would have been on a waiting list for psychology already if it wasn't for Covid.

"I'm claustrophobic and I'm being asked to stay indoors. I'm in a flat. I don't have a garden.

"This is really quite challenging because I feel like I'm in a prison cell and I wasn't coping with the panic, but I was discharged with a letter saying 'you can contact Lifelink'.

"Lifelink is for people with mild to moderate conditions - I've been off work for a year and a half. I don't have a mild or moderate illness."

As well as claustrophobia, Julie has also begun developing symptoms of agoraphobia exacerbated by the fears over social distancing and the risk of being exposed to the virus when she leaves her home in the city's west end, which she says has become increasingly crowded in recent weeks.

Since January she has been prescribed Diazepam for anxiety.

"I now take quite a lot of it which is new for me because I'm very anti-drugs, but without it I wouldn't be able to cope.

"There are problems with social distancing and a minority who refuse to adhere to it. I have to take 15mg of Diazepam to go for a walk because that's the only way I can manage when people come within a metre of me."

Another source of anxiety is buying groceries because Julie is not on the shielding list prioritised for online delivery slots.

"I'm simply no more able to go to a supermarket right now than someone on the shielding list, and I don't have anyone to go for me.

"The slots are not released in the daytime so I have to set my alarm to get up several times during the night instead to try to get one.

"It's a constant source of anxiety because I don't know if I'll get a slot at all.

"I've also had an eating disorder in the past and that's something I've battled for 30 years, so for me to be able to access food safely is crucial to avoid that escalating ever again.

"I won't be the only person in that position who's really struggling."

Rachel Cackett, executive director of Samaritans Scotland, said one in three calls to their helpline currently relate to coronavirus, including "struggles with mental health, access to services as well as the impact on basic needs such as food, housing and employment”.

Billy Watson, chief executive at SAMH, said: “These are difficult times and we know our colleagues in the NHS are facing unprecedented demands, but we cannot allow people with mental health problems to go without treatment and support.”

A spokeswoman for NHS Greater Glasgow and Clyde said: "We continue to provide mental health support for those who need it in the face of Covid-19.

"Our emergency services remain in place for anyone who is in a mental health crisis and we continue to manage urgent referrals into our mental health services."

*not her real name