The East of England Cancer Alliances have an active Patient Advisory Board which ensures that the views and experiences of local people affected by cancer are at the heart of their work.
We recognise that during the Covid-19 Pandemic there are many questions and concerns for patients, their families and carers. Some of these were raised at a recent meeting of the Patient Advisory Board, and are set out below, with responses.
Please note that these were correct at time of publishing on 12 January 2021.
More information about the Patient Advisory Board is available here.
The NHS Constitution makes clear that the service is there for all.
Most decisions in the NHS, especially those about the treatment of individuals and the detailed organisation of services, are rightly taken by the local NHS.
It is widely recognised that services currently face unprecedented demands and while clinicians are faced with growing numbers of critically ill patients arriving as emergencies, they are prioritising services as best they can, in extremely difficult circumstances.
Non-Covid hospital care is still available in all hospitals and cancer care continues to be a priority, for example, over other elective routine diagnostics and surgery.
As in the rest of the country, some operating theatres have had to be temporarily converted to provide additional beds in Intensive Care or High Dependency Units. In addition, there are staff shortages in some areas due to sickness or self isolation, and some clinical staff are being redeployed to meet emergency demands on the front line.
However, it is also clear that our hospitals are currently continuing to provide cancer services where these can be safely delivered.
Where services are being provided, it is very important for patients to attend, in line with instructions from the hospital or primary care, which are designed to keep everyone safe.
We are also working to ensure that NHS staff and vulnerable patients are vaccinated against Covid-19 as soon as possible, in order to resume all services fully.
How do we decide (who decides?) on 'pausing' cancer screening, given the risk of missed or delayed diagnoses? How many people are walking around with undiagnosed cancer, whose cancer would have been diagnosed had their screening taken place? And how will we cope with the surge of diagnoses that will occur once conditions are normalised? Not to mention the more advanced nature of these diagnoses.
Any decision to pause national screening programmes is made by the national team, not local hospitals. Screening services may not be able to operate at full capacity given the additional safety measures needed such as extra cleaning, personal protective equipment and social distancing. Staff sickness and staff having to shield, or isolate will also impact on delivering these services safely.
It is worth noting that, at the end of last year, the East of England region had the highest rate of cancer treatment recovery in the country, following Covid-19 Wave 1, according to Cancer Waiting Times information. Referral numbers were also restored, and the Breast Cancer Screening Programme had screened all 40,000 women who had been invited for screening and had been waiting during the pandemic.
This was a significant achievement and demonstrates what can be achieved.
I can understand that, in the moment, it might seem logical to pause screening/diagnostics/surgery, because you need the staff for treating urgent Covid. Would we make the same decisions if those people were in the room?
Cancellation or postponement of treatment is always an absolute last resort for the NHS and such decisions are never taken without full and fair consideration of patients, whether they are present or not. These are never easy decisions; they are based on clinical priorities and not on patient visibility.
Hospitals are already segregated into Covid-safe areas (green sites) and Covid areas (amber and red sites). In some areas this is further supplemented by the use of off site facilities such as independent sector hospitals.
NHS trusts had to step up an increased number of Covid-19 areas at pace given the sudden emergence of a far more transmittable variant and having responded to that urgent need they are now focusing on increasing the number of green site provision.
In the longer term, the NHS has clear plans to provide Rapid Diagnostic Centres where patients will be able to attend, away from other clinical areas, to dedicated centres providing prompt testing, quicker diagnosis and a more personalised care plan. The Cancer Alliance has a clear role in helping deliver this in our region.
Being told via zoom or telephone is not satisfactory form of good communication. The most effective form of communication is face to face with a significant other person present to support the patient. Many cancer patients are elderly so face to face is the only way that they are able to communicate.
All clinicians would, given a choice, choose to communicate significant news face to face with their patient. The move to remote platforms has been taken to protect patients from preventable exposure to Covid-19.
Given the sensitive nature of such conversations, some patients have said that there can be advantages to patients receiving updates on their care or receiving upsetting news in their familiar surroundings with family present rather than having to travel, sometimes long distances, to a hospital with all the logistics and waiting that this involves. The important thing is ensuring that patients have an opportunity to have someone with them, if possible.
Even if the patient is likely to be palliative, they have a right to be have appointments as scheduled. This is not only stressful to the patient but also to the family.
All patients with cancer are prioritised by clinical need and age is not a factor. There may have been other considerations as to why an appointment had been deferred and if anyone has concerns about this, the patient or family should raise this with their treatment team or GP.
The NHS does not tolerate discrimination of any kind:
The Cancer Alliances are developing a process to give oversight of any gaps in service provision- particularly in those Trusts that have been hit hardest with the number of Covid patients - and which Trusts may have capacity. Those systems that are particularly challenged are already working with a system of ‘mutual aid’ to identify where patients could have their treatment or diagnostic tests at a different hospital that has capacity. We will also be looking beyond our region if necessary, while recognising that regions outside the East of England are also significantly challenged, eg London.
Our systems are also looking to increase their use of “green” sites such as private hospitals for those patients requiring less complex cancer surgery.
Furthermore, hospital teams are following clinical guidance which prioritises theatre use for the most critical patients, including those needing urgent cancer surgery.
This appears to delay a diagnosis as well as increase the risk of getting Covid, especially as many cancer patients are elderly - or do they not matter?
Patients may have to travel to sites that are not their usual treatment centres, in order to ensure that they are attending clean Covid-free areas for diagnostics and treatments. Equally as we are looking to ensure that patients get diagnosed or treated as quickly as possible, patients may need to travel to another trust that has more capacity.
It is important to recognise that many lessons were learned in wave 1 of the pandemic.
As part of their resilience, NHS trusts have set up “mutual aid” arrangements to provide support beyond normal geographical boundaries where necessary to ensure that patients are seen and treated as soon as possible.
In order to discharge patients’ rights to access services within maximum waiting times from referral to treatment, every provider organisation needs to know, at least weekly, how long each patient has waited since being referred for treatment. A local weekly Patient Tracking List (PTL) provides this oversight.
All Trusts keep PTLs. This is an electronic mechanism that records every episode of the patient’s care from referral, diagnostics, treatments and appointments. It will ‘flag’ when patients are approaching critical or potential breach dates.
The cancer teams are looking at these much more frequently during this pandemic and the clinical teams are constantly reviewing those patients experiencing delays and in many cases phoning patients to check for any worsening symptoms and to talk through anxieties. It is important that patients are prioritised in accordance to clinical need.
It is essential that patients attend all appointments they are invited to. Every precaution is in place to keep people safe, with information available in appointment letters to patients or on hospital websites.
If your clinical team thought it was an unnecessary appointment, they would cancel it or change it to online. If you have concerns about your appointment, please discuss this with your treatment team. The vaccination programme will, over time, help alleviate concerns.
For cancer services the independent sector successfully worked alongside the NHS to deliver cancer diagnostics and treatments in the first wave and this has continued in a number of areas across the region. The links established with the independent sector hospitals during the first wave of the pandemic were extremely effective. The contracts were for a fixed time and are now under review nationally.
However, as a region we do not have independent sector providers with HDU/ITU capacity so the treatment of more complex cancers has not been appropriate for an independent sector setting. Therefore, we have created capacity for NHS trusts to move lower complexity cases (ie those procedures that do not require a HDU bed) into the independent sector to enable more complex urgent surgery and urgent cancers to be treated in the NHS trust, to ensure the best possible outcomes for all patients.
Urgent cancer surgery, diagnosis and treatment remains an absolute priority in the East of England and we are using whatever resources are available to us including the independent sector where appropriate.
The NHS is asking everyone to look at their skills and to consider offering voluntary support. The NHS is looking at ways to utilise this support quickly, effectively and safely.
People who are living with cancer should follow advice from their GP, from their shielding letter and from their treatment team. Everyone should do this to keep themselves safe and well and of course, to support the NHS to use its resources as effectively as possible
Public Health England will employ existing surveillance systems and enhanced follow-up of cases to monitor how effective the vaccine is at protecting against a range of outcomes including: infection, symptomatic disease, hospitalisations, mortality and onwards transmission.
PHE indicates it is likely to be some time until it has sufficient data to provide a clear picture of how vaccination impacts on onward transmission. The current advice is to continue to shield as you were before you received the vaccine 14. How long will the vaccines protect people for? As above – it is under evaluation
We are working to the three current priorities set out by NHS England/Information in East of England:
• Managing the current incident;
• Supporting our challenged organisations in order to continue to provide safe services to NHS patients, and
• Delivery of the vaccination.
A wealth of information is available online, but please use authoritative sources only, for example, see: