Jumpstarting the health system: 'If I can go through major surgery, then why can’t I be checked up just now?'

“Have you ever seen that movie, 28 Days Later? It was like that, apart from the zombies,” Maureen Thompson, 53, says about having a tumour removed from her lungs during the height of the pandemic.

“All I saw was the staff, when they could come into the room, during medication, mealtime, or to change the fluids.

“And it felt as if there was no one in the hospital. We weren’t allowed any family, no one was allowed to come and see me. I had to go in on my own, I had to go through the surgery on my own.

“Honestly, I cried every single day.”

Thompson was diagnosed with lung cancer in early March, just weeks before Scotland went into lockdown. Four weeks and two days later she had life-saving surgery to remove the tumour at Golden Jubilee National Hospital.

After the surgery, she spent almost five months shielding in her Castlemilk flat. However, Thompson has not seen a health professional since her surgery in April. She has had numerous appointments with nurses, consultants and surgeons cancelled.

The day that I speak to her, she is getting ready to go to hospital for her first face-to-face check up with a respiratory consultant.

“I got out on exactly the sixth day post-surgery, they said it was safer at home shielding rather than at a hospital, even though there were no cases of coronavirus at the hospital at that time,” she tells Holyrood.

“I was scared to catch the virus, because my surgeon told me… if you catch that virus there’s no coming back for you – and you can’t put it any blunter than that.”

Weeks after the surgery, Thompson noticed swelling over the area where the tumour was removed.

“It’s getting sorer and it feels bigger,” she says, “but every time I’d make an appointment, they would cancel it on me. I never got my six-week check-up after my surgery, my respiratory appointment with the consultant has been cancelled umpteen times. Every hospital appointment I’ve had has been cancelled because of coronavirus, every single one.

“I went through major life-saving surgery to get cancer out of my lung, and I know that we’ve been through a horrible time just now, but if I can go through major surgery at the height of coronavirus then why can’t I be checked up just now?”

When NHS Scotland was put into emergency-mode earlier this year, staff from across the health service were redeployed to help respond to COVID-19. This meant that many services, classified as “non-urgent”, were paused.

But now that the NHS is being remobilised, the consequences of the changes made back in March and April are starting to stack up.

One major issue for the Scottish Government is getting all cancer services back up and running. With cancer screening, diagnostic testing, and even some cancer treatments paused for months, the backlog of patients waiting to be seen is rapidly increasing. Recent Public Health Scotland (PHS) statistics found that 65 per cent of patients in Scotland waited more than six weeks for a diagnostic test in the quarter ending 30 June. Almost 100,000 patients were waiting for eight key tests and half of them had been waiting longer than 13 weeks.

Cancer Research UK Scotland (CRUK) believes urgently increasing service capacity is essential and that tackling the waiting lists will require more workforce and equipment.

The charity’s head of external affairs Marion O’Neill tells Holyrood that the PHS data revealed “the backlog is mounting”.

“We are worried that treatment, diagnosis and screening services just aren’t getting back on track fast enough,” she says.

“During the lockdown fewer people have been diagnosed and treated, we know that screening services are paused, we know that clinical trials are paused, which removed treatment options for many patients.

“The Scottish Government has ensured that cancer is being kept as a priority and we are seeing cancer services starting to recover. The focus on the recovery is great, but the longer we run without the full range of services, then the likelihood is that we will see reduced patient experience with care and ultimately quality of life, and that’s the concerning bit.”

The Scottish Government has set up a national cancer recovery group and announced that a national cancer plan will be released by early autumn. O’Neill says the priority must be “the urgent recovery of all cancer services” and addressing NHS staffing shortages.

“For us, it is about the access to diagnostic services and the access to treatment, because those are the two things that we know impact on quality of life and improve early diagnosis of cancer,” she says.

“I think what underpins all that, and what has become more urgent now than ever, is an action plan about tackling staff shortages in the NHS. They have been through a really difficult time with COVID, some of them have been redeployed, so there’s a real opportunity to look at what are the lessons learned in how we’ve used staff and skills through COVID, and how can we apply some of that to cancer as well.”

Between March and July this year, demand for Cancer Support Scotland services increased by 23 per cent, chief executive Rob Murray tells Holyrood. The charity delivers therapy, podiatry and stress management services to promote mental and physical wellbeing for those affected by cancer. “To put that number in context, during that time we were seeing higher levels of risk, so people were talking to us about delays in treatment, reduced treatment, more worry around things like germaphobia, bereavement, isolation, loneliness,” Murray explains.

“There was a lot of anxiety about the pause in cancer screening. People that had, say, breast cancer were worried about people getting breast cancer and not having that screening option. So that fear of recurrence – but not for them, for others. Reduced treatments, shorter stays in the hospital, not being able to have your family members present. There was some stuff around the relationships with medical teams. And that anxiety about having to go into a GP or a hospital for treatment.

“Whilst I think the NHS and GP practices have done really good work to limit the spread, we were definitely hearing from people that were just anxious about going into these environments.”

Thompson used the charity’s phone counselling in the months after her surgery. “I don’t think I would have got through this without their help,” she says, “I was so worried about not coming through it. Without Cancer Support Scotland I wouldn’t have got where I am today. I could tell them anything that I was feeling.”

In remobilising the health service, Cancer Support Scotland believes there must be an urgent focus on mental health. “If you’ve been given a terminal diagnosis, or if you’re going through cancer treatment and it’s impacting your family, your stress levels, your anxiety, you’re worried about germs, then that has a massive impact in your quality of life and I think Scotland can and should do better on that,” Murray says. “There needs to be a continued investment in a range of emotional and psychological interventions. We keep hearing about ‘let’s build back better’, I absolutely think that mental health and wellbeing support needs to be in there.”

On 19 August, health secretary Jeane Freeman updated the Scottish Parliament on the work underway to remobilise Scotland’s health services. She admitted that the number of people waiting for tests and treatments “is rising and will be added to by unexpressed demand from those who have either not felt safe to come forward or did not want to add to the pressure on our health and care services during the peak of the pandemic”.

“That will be evident in mental health services as much as – if not more than – in physical health, and it will be acutely felt by those who struggle with drug or alcohol addiction,” she said. But Freeman said there remained “real limitations” in remobilising all health services. “Boards have been cautiously resuming a wide range of routine services that were paused in the initial response and are doing so in line with clinical priorities, but many will not be operating in the same way as before, nor in the same volumes. The numbers of patients who can be seen, diagnosed and treated in the timeframes of before will clearly be reduced by the continuing and necessary infection prevention and control measures, such as altered patient flows, appropriate bed spacing, physical distancing, PPE requirements and time needed for additional cleaning between clinical sessions.”

She said treatment would continue to be triaged and prioritised “on the basis of clinical need, in line with advice and guidelines developed and agreed with the royal colleges and others”.

Another group set up to help with re-starting the health system, the mobilisation recovery group, has been meeting fortnightly to discuss priorities in moving forward. The Health and Social Care Alliance Scotland has been feeding into this work, with its director of strategic partnerships and engagement Irene Oldfather telling Holyrood the organisation is pushing for “a national conversation across Scotland”, held digitally, to ask people what health and care services matter most to them, their families and friends.

“Some of the things I would have around this, from the responses that we’re hearing when speaking to unpaid carers, is obviously the importance of social care, it’s really big on people’s agenda and I think we have to look very carefully at how do we make sure that human rights-based approaches are strongly embedded into the social care system?

“Something that was very difficult for people was, because of the pandemic, the chronic pain clinics weren’t operating. For people with chronic pain that was massive, so I think things like chronic pain, dementia is another area, social care, these are the kind of areas that I think we need to be looking very carefully at.”

For those with dementia, Oldfather says the lockdown, and the social isolation that came with it, had been “very difficult – and those are months that these people cannot get back”.

“If we’re looking to prepare for a potential second wave, can we think about some sort of balanced risk around visiting and allowing people to continue in some way to keep a connection with their families and loved ones? Obviously we want to protect everyone in care homes, but this kind of idea that, maybe there’s one family member or two family members and it’s over an hour or two hours, that there’s ways to get around this, because it was really heart-breaking for families and the social costs on people with dementia were very difficult.”

Additionally, the pandemic has highlighted issues around health and social care for those living in deprived, and black and minority ethnic communities. “As we go through renewal, we need to be thinking about targeting and looking at issues around inequality across society, and those issues that the pandemic has highlighted,” she says, adding: “I’d be strongly listening to the voice of GPs in deprived communities.”

On a positive note, she says the health crisis had accelerated the integration of health and social care and demonstrated the important role played by the third sector.

“We’ve seen that coming together of people in local communities to support those in great need living with long-term conditions, older people, disabled people, unpaid carers, who were really hit during that social isolation period. We saw in the communities, statutory organisations working alongside third sector organisations to deliver services. One example is the transport hub in Tayside – with the health board, ambulance service, local community volunteers, third sector organisations coming together to operate a transport hub for patients that took some of the pressure off the ambulance service. How do we continue that?”

Looking ahead, there are fears that COVID-19 will change medical research forever, after all clinical research trials in Scotland had to be paused earlier this year.

A report to the Scottish Parliament Cross Party Group on Cancer in June revealed there had been a 95 per cent drop in new patients entering clinical trials, leaving people with cancer fewer treatment options and delaying research into drugs that could save lives.

CRUK’s O’Neill tells Holyrood that due to the financial impact of COVID-19: “We have made the difficult decision not to fund any new trials going forward.”

She says the charity is forecasting a drop of £160m in the next year and will have to cut £44m in research funding. “There’s the immediate impact on people entering trials now, which leaves those with cancer fewer options for treatment, but there’s a longer-term impact because it will delay research into drugs that could potentially be effective in the future. It’s important that we get the trials and research back up and running as quickly as possible, ensuring that patients can participate safely.”

Cancer Support Scotland has been forced to restructure. Murray says, after furloughing almost 60 per cent of its staff, he was unable to welcome these employees back as the charity had suffered a 35 per cent drop in income.

“The Scottish Government, to give them credit, introduced things like the Resilience Fund and the Wellbeing Fund, but the Wellbeing Fund covered a three-month period – our funding will run out at the end of the month,” Murray says.

“Whilst we’re providing vital services – the cabinet secretary and others have said they are vital – the funding is just not there to back it up.”

O’Neill says the impact of COVID-19 and changes to the health service may affect cancer patients, research and services “for many years to come”.

“We are seeing the number of suspected cancer cases being left unseen stacking up, so we don’t know the true impact at this point of the pandemic, but with fewer people being diagnosed and treated, it will mean poorer outcomes for patients,” she says.

Asked whether she believes lockdowns and changes to the NHS may lead to more deaths than the virus itself, she says: “The difficulty is, we just don’t know.”

“We need to make sure we get it right going forward,” O’Neill says. “We completely understand what clinicians and the NHS did to keep NHS services running at that time, but we do know that there was a pattern of cancellations, delays and changes for many patients.

“A co-ordinated national approach is what we need to do so that we can address that bottleneck. We can’t turn back the clock on those that have been impacted during this lockdown period, but what we can do is work closely and collaboratively with the Scottish Government to try to minimise the impact going forward.”