Is everybody else here aware of the worryingly decreased cancer treatment being offered to patients (throughout England NHS Authorities at least as far as I know) to make way for anticiated Corona patients? My local NHS Oncology hospital is in fact a leading hospital and treating people from many other authorities outside it's jurisdiction. After attending an appointment this morning, I was told that ALL clinical trials are being ceased (save a few that are on a 3 month delay and will be cancelled if Corona continues or worsens). As this isn't bad enough, no clinical trials will be resumed until a vacination has been found for the Corona Virus, which is unlikely to be before 2021.
In addition to this, all X-rays, CT scans, MRI and PET Scans are being cancelled to be reviewed once Corona Virus situation improves, so that radiology departments and facilities can be freed up to deal with Corona patients. Again, this will remain the case until a vaccination is found although A&E will refer patients admitted to A&E for diagnostic testing whether Corona Virus, and as normal if deemed necessary.
As if the above isn't enough, Chemotherapy, Radiotherapy and all other cancer treatments, both for new, ongoing and maintenance patients is being suspended, all to be reviewed periodically. I can confirm that all other standard clinics such as the Ultrasound Bowel Cancer Clinic has been closed!
My understanding is that only "Urgent" patients will receive necessary treatment and only if the NHS Trust consider the risk of such treatments outweighs the risks f the Virus - the patient will have no input.
All other regular clinics and diagnostic testing such as Rheumatology, Blood disorders, Diabetes and on and on, and only urgent cases will be considered
I am perfectly aware of the demands on the NHS at this time and the need to free up beds, respiratory facilities, doctors and nurses and other staff etc, but for the life of me, I cannot truthfully comprehend any common sense decision to close basically every outpatient clinic and treatment for this purpose. Cancer patients in particular extremely vulnerable and this could result in many many unnecessary cancer deaths as well as Corona Deaths. Yes, you can attend A&e or be referred urgent when you develop urgent symptoms, but 9/10 times this is a sign of advance cancer, and surely this clearly presents the risk then of potentially reduced survival rates. In addition, all the clinical trials that have been going for say over a year or coming to the end of the year, will basically be either out the window with potential cures lost, or at the very least, potential cures and advances in treatment delayed by at least a year if not more. This will also potentially cancel some patients out of the trial once, and if, it is reinstated and again, may reduce their long term survival.
My point is, surely, given the serious and precarious position cancer patients find themselves in,( ie. some cancers and tumors can progress extremely quickly from Stage 1 to Stage 4 and/or terminal,) ALL hospital Trusts should have made a far better and safer provision for cancer patients and their treatments than the "let's wait and see" position they have taken. I am completely shocked that none of the major News Channels have even remotely dealt with this matter or considered it in any way as yet another serious, life threatening victim of COVID-19 equally to that of lack of staff an PPE.
Please tell me I am not the only person, angry upset and shocked by what is happening and what this could mean to all of us and our families and/or friends.
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SunshineAhead
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Yes I had heard. So very frightening that the NHS feel compelled to make these decisions. My sister is also very ill in the community and worries about a) having to go into hospital if her condition becomes life threatening given the risk of reinfection and b) not getting in and dying in the community if iher condition deteriorates and it becomes really desperate re beds. Fortunately the cancer team here are still amazingly helpful via telephone contact and reassurance but if England is anything to go by don't know how long this will last. I pray things improve for us all.
It’s so concerning, I did however check out the NICE guidelines which have been published in light of the Coronavirus and I went from being so worried to a little more calm. Check them out. It’s goes into some detail.
Let’s hope this is just temporary and the essential care of cancer patients is reinstated in the coming weeks if not we have to get some exposure to this.
I guess as we are nearing the “peak” some disruption is expected but we’re still here and we still want to live!
I think it's really important to check out the official information whether from NHS or gov.uk or Onecancer voice (a collaboration of many major cancer charities) rather than 'seen in newspapers, tv programmes, twitter or anything else less official. rumours often spread this week and can change during communication to not resembling what was actually said. Cancer is one of the few protected services even during the pandemic but as we're aware, there are different types of cancers and grades as well as different levels of fitness amongst patients. it's as much about the resilience of the NHS as anything - we have to face up to the unprecedented situation and appreciate that many waiting for heart operations, hip replacements (who may have already waited many months in pain/immobility), and many many other conditions are not even on any consideration at this time. You can sign up for daily bulletins from gov.uk but there is everything on there that the government are doing - whether business guidance, legislation changes etc so for now, as ever, I'd urge people to use trusted websites for their information including Roy Castle lung cancer foundation for more specific advice about lung cancer and British Lung Foundation for more general respiratory conditions as well as gov. uk hang on in there everyone - and take care
Thank you for replying. However, the tone of your reply implies I have taken my information from rumour etc. I am insulted that you have implied this. I hsf6a hospital consultant appointment on Thursday and due to my medical knowledge mostly gained from over 30 years of clinical negligence and personal injury litigation, as well as my own personal health issues, I have an extremely excellent relationship with my clinical staff and privileged to be the recipient of much information that others may not. I can assure you the reduced and in some cases, non-existent referrals and treatment in my region is accurate. Please therefore do not imply that those of us that give information that does not match that of your own knowledge, or that of the clinical national guidelines or so called assurances is incorrect.
I am offended that you should imply simply by your response, that what I have said is rumour and incorrect. It is naive for anybody to believe what the Government, NHS and other authorities are telling you is incorrect. I have no doubt that some areas in the country are lucky enough to have their cancer centres and treatments continuing however, we are not all that lucky. Just remember NICE guidelines referrals for new lung cancer patients are not adhered to in the majority of health service regions and in some it takes months rather than weeks or days to get to initial diagnosis and treatment. Please therefore do not be so naive as to believe we are all as lucky as you maybe and our local NHS Trusts do not all work as efficiently as those you are familiar with nor for do they comply with the NICE timeliness or guidelines because economically they cannot afford to do so.
I mean no offence to you and it is admirable you are so trusting of what is being stated but some of us are in areas not so efficient so please accept that everything is not always what authorities put in black and white.
I am so sorry - there is no tone, implication, insult or inference intended. it is a general comment that there is such a lot of 'noise' in the system and not all of it helpful. I apologise sincerely that you think I meant to offend you or anyone. I have been trying to 'steward' official guidance to calm some of the most frightened people in society. I'm not at all naive or lucky. (apart from surviving lung cancer so far and dedicating so much of my time since (voluntarily and at personal cost) to lung cancer research on many levels. I work in the NHS and know well the variation that existed before this began. I also live in the largest Covid 19 'hotspot' outside London. I lived in Milan for 2 years and watching their health service collapse in the current situation and so many lives lost is heartbreaking. The NHS is a finite resource so some things have to be prioritised differently as a result. I am that voice on many committees nationally and internationally speaking out for those of us treated in district general hospitals without specialist treatment available. My local Trust even lost chemotherapy 2 years ago and I've spoken out tirelessly to have it returned. I remind clinicians who devise policies that most patients do not receive their treatments in specialist centres so I could equally take offence at your response. I won't as I accept the unprecedented situation and all that it causes. I also teach communication skills and remind people that there is no 'tone' in any written word - only that we read into it - which may be quite different from the writer's intention. Unless words are in bold/italics we cannot know where the emphasis on words is meant. Readers of books will read different inference into storyline, characters etc and be disappointed when films/television portray them or the story differently. Please do not take my comment personally - it is general advice with no tone of any type intended - made to alleviate general concern. We're all trying our best to help others who may not know where to find the latest updates in what is an ever changing situation. I receive many official updates in my various roles so think it better to signpost these. Stay well and keep up your survival efforts - there are more important ways of preserving our sanity than criticising one another in what are now two common enemies - lung cancer and covid 19.
Great advice Janette. All we can do is look to the official information. I believe in our NHS and as you say many others who have equally challenging diagnosis will not receive any special treatment they will just have their procedures cancelled. Keep positive, stay healthy and stay inside! It’s all we can do. Thanks x
I appreciate you raising this issue and the concerns. The NHS is currently on emergency footing and every effort is being made to adjust rapidly to a virus which was unknown only a few months ago.
The NHS is reviewing services for cancer patients and trying to adapt to the impact of the pandemic. Where at all possible cancer services will continue to be provided, but will have to adjust for a number of reasons:
1. Whilst a treatment regime may still reduce cancer activity, the impact on the immune system may mean the person with cancer is at more risk from covid infection. So testing and treatment has to change to offer the safest options to overall health.
2. Staff and treatment centres may be impacted by covid-19 exposure and have reduced capacity.
All cancer teams will talk to patients about changes to their treatment and planned follow up. The priority in this is to keep people safe and limit their exposure to the virus, which we know can be particularly dangerous for those with respiratory disease, including lung cancer. Treatment and diagnosis will continue, but need to be delivered in a safe way that prioritises patients health. Individual treatment decisions will be made in the best interest of the patient weighing up all these factors. Efforts are being made to shield the most at risk population and recommend they follow guidance on isolation.
Clinical trials, as with other services, are having to alter to respond to the pandemic. Some trials are continuing, where they are not exposing participants to increased risk of covid-19 exposure, but many are having to pause temporarily. This is a pragmatic response from the research community to respond to the covid-19 impact.
We appreciate this is distressing and difficult. Support services, cancer charities are working with health care services which are finding ways to work that are different, offer the safest and most appropriate treatment and support whilst keeping people at low risk from contracting the virus, particularly those who are vulnerable.
If you have any specific concerns or queries, your lung cancer team should be able to assist. Our Ask the Nurse service is operating to try and provide support and up to date information. We know there is a lot of information to take in.
With respect and much appreciation for your detailed response. Whilst I agree lung cancer patients more at risk with the virus. If their cancer grows undetected and Asymptomatic for nrct3 months or so. By the time symptoms present its advanced and serious risk of death. So, virus or cancer? Take your pick! It's totally unacceptable all diagnostics deferred. Absolutely no reason they can't hire private hospital CT scan or xrays for checks that are due ie6 months or year they pay private company for ALL PET scans! I'm sorry but you will never make me understand why it's OK to delay these things with cancer patients. I've worked on clinical negligence claims for over 30 years and I'm afraid the actions and risks some NHS Trusts are pursuing is going to open the floodgates to multiple claims for unnecessary deaths in due course simply due to refusal to perform appropriate diagnostic. NICE guide says they can perform these things in alternative venues - their refusal to do so is blatant negligence.
This is not a dig at the NHS staff as we all know they don't make these decisions. It's an angry response to the actions and decisions of the business men running our NHS Trusts. Medics have no say. So please don't defend them.
I agree totally. My husband has stage 4 lung cancer diagnosed Dec 2018 and also has had prostate cancer for the past 12 years unfortunately both are now active cancers. We have had a delay in reading very rent urgently requested scans so do not fully know what we are currently facing and as you point out a balancing act regarding surviving the virus vs treatment is our reality. Along side that is the lack of icu beds and staff sickness in the chemotherapy department. Three weeks ago further chemotherapy or immunotherapy was mentioned . Last Monday ‘it was wait and see’ what the scan shows, but be very aware that treatment depends on the above provisos.
To add to my concerns one local hospice has closed . These services depend on charity shops ( now closed) fund raising activities (now stopped) . I question the ability to carry on providing palliative and end of life care.
This is not a pop at our NHS workers at all but a post from a very worried wife
Thank you for your reply and I'm so sorry to hear of your husbands plight it sounds like a very difficult time for you both. As I see it these Trust managers have simply decided Corona virus victims or cancer and they've decided they can only deal with the virus as their only priority. I see no reason why they can't treat both just find another location to treat cancer patients simple! The pathetic and nonsensical argument that if patients receive chemo they're at risk of getting the virus is unacceptable and baffling. Cancer patients are in basic lockdown in their homes so reducing risk anyway but more importantly if some patients don't receive their treatment quite bluntly put they're at very high risk of dying from their cancer! I think it's disgusting! If you break your leg it will get treated as urgent but if you have cancer hard luck diagnostics and treatment is being withheld until you're so ill it's probably too late any way. Nobody can show any evidence it's any different. In fact I will go one-step further and say Oncology Hospital in Bristol outpatients is all but shutdown and all staff are being retrained and moved to Work next door in the BRI for Corona patients. The xray department is now closed to outpatients unless urgent including scans as bulk of radiographers allocated to Corona patients. The bowel cancer ultrasound detection team has been totally shutdown and all staff now allocated to the virus patients.
I know this pandemic is deadly but please do not tell me its right or acceptable to leave cancer patients to wait until their symptoms become serious enough for A&E referral before they get any tests or treatment. We are not 2nd rate citizens and this is not right.
I think that the issue of cancer treatment vs Coronavirus treatment is getting some publicity. A man was on the 10 o’clock news last night talking about his prostate cancer surgery being cancelled.
I do hope the message gets out there .
I agree with you Chemotherapy immediately places the patient and those caring for them into an isolation situation. Family and friend's do not visit. Going out is not something you can do. You get used to it and you get on with it. You learn to live voluntarily at home in lockdown with constant use of bleach, hand sanitiser , detox wipes and of course CSI gloves become the new normal.
A month ago second line chemotherapy treatment or immunotherapy was being discussed . Then a week ago we are told the risks of catching Coronavirus outweighs offering treatment .
We are not stupid. We have watched the spread of the virus since it emerged and we were well aware of the risks that would go alongside treatments.
I intend to try to find out what is happening to all of the cancer services in our local hospital . University Hospital Coventry and Warwickshire.
This isn’t scaremongering, this is reality. NICE guidelines can be quoted but how long before the pandemic renders them unworkable and obsolete.?
Several major cancer charities have collaborated to ensure that patients are updated with the information in a consistent way as 'one cancer voice' and are answering patients questions. also worth signing up to gov.uk for official bulletins - this is an unprecedented pandemic so priorities have to be made. At the moment different hospital systems are under different pressures (our area is a Covid 19 hotspot) but some of the treatment delays/timings were under review anyway (immunotherapy toxicities versus efficacy) . it's a worrying time for all but best to use the official information as it's changing every day so stuff quickly becomes out of date. the latest one I've seen was updated 24/3/20 roycastle.org/covid-19/info...
I appreciate your response and concerns Sunshine Ahead.
Along with the big cancer charities we are monitoring and collating the impact of covid-19 on services. This will be used to identify problems and seek NHS guidance and action on how these will be addressed. From the briefings to date we would expect alternative provision, such as the chemotherapy and scanning options you have highlighted, to be implemented in the weeks ahead.
Our understanding is not that all treatment and follow up such as scans will be suspended for 3 months, but that there will be some alteration and delay. I will relay your concerns and queries through the cancer group.
If you have any specific points you wish made please do Private Message me and I will try and feedback,
Appreciate this is an uncertain and scary time for many in this community and we are keen to do everything within our influence to reduce and mitigate this,
I'm so sorry for people getting their treatment postponed or delayed by your NHS. Our health system is in chaos too. I had my oral cancer surgery on Thursday and felt very lucky to get it. They said they had good results. Much because of the
Opdivo I had received about three weeks before that shrunk my tumor. My struggle is just beginning and I got a long way to go, with G-d's blessing, but there can be some good news out there.
Totally terrified. Are the charities lobbying at all ?
Thank you for your reply and I'm so glad you're on the road to recovery. Its mostly a long road but baby steps when necessary and be confident.
Sadly it appears the leading cancer charities appear happy to accept what the Government and NICE (the organisation which sets out guidelines for "best practice" and decide what drugs and clinical trials we can or cannot use) rather than listen to patients experiences of past couple of weeks, what we are seeing, hearing at grass roots and what we are personally being told. Even the media have given the subject little more than a whisper.
One of my greatest fears is we will revert to practice of years gone by. As the virus presents with flu like symptoms and a persistent cough imagine how many people will have these symptoms which can also be lung cancer symptoms and told to just self isolate for 7 to 14 days rather than be offered an xray, which will be the case. Many patients present these symptoms at the outset. They then go asymptomatic for several weeks or months as did I. By the time they return to their doctor it could be very advanced or even too late. It will happen. It truly worries me
the major charities are working together with the clinicians to raise the issues of most importance to their patients. They have formed an alliance 'one cancer voice'. Each cancer charity is feeding in their concerns for their specific patients and displaying the latest information on their websites. For lung cancer the charity partner is Roy Castle lung cancer foundation. The risks/issues will differ dependent on the type of cancer so there is specialist clinical advice now for most cancer types that has been agreed across the clinical expert groups to revise pathways/treatments for now. it is clearly a fast moving situation so important to stay updated. Letters are being drafted today to inform patients of what will happen to their own treatment as I understand it.
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