UK Cancer Care during a National Emergency
In these unprecedented times, populations the world over have been confronted with a terrifying new reality that has unravelled daily routines, reordered national priorities and thrown into disarray virtually every aspect of human life. As governments scrambled to react, citizens coped the best they could with constantly changing instructions, difficulties in accessing essential provisions and the knowledge that life, as they had known it, had vanished in the face of the coronavirus. In the UK, the country with the world’s worst incidence of asbestos cancer, the treatment of patients with mesothelioma – the signature asbestos cancer –as well as other asbestos-related cancers and respiratory diseases was disrupted as hospitals geared up to prepare for the onslaught of the COVID-19 pandemic.1
Commenting on her situation as of March 26, 2020, Mesothelioma Warrior extraordinaire Mavis Nye wrote:
“The Coronavirus has changed my whole life as The Royal Marsden phoned me to let me know my trial was on hold for 12 weeks and will then be reviewed again. I accepted what my oncologist was saying of course but when I put the phone down, it hit me the enormity of what that meant. I have fought mesothelioma for 11 years and I have always been in control of my treatment as I had chased for trials when chemotherapy was the only treatment available to patients. Immunotherapy changed the survival rate for mesothelioma patients and I was one of the first to enter the trials. Now, the Coronavirus was cutting off my lifeline.
So, I put on my big girl’s knickers and thought that, well I got 15% shrinkage on the new growth that had happened after two years of a complete response – two years of freedom – and then one further year of treatment with Pembrolizumab on the MSD Trial. I feel I can carry on with a slow growth back to that 15% to put me back where I was a year ago with no pain. So that’s how I have been able to carry on with a positive outlook. A phone call I had today from my treatment team was reassuring; they said, I will be assessed as soon as this is all over and will go back on the trial. So, I’m very content that they are not going to cut me off.”
Ever since her mesothelioma diagnosis in 2009, Mavis has been working to create and maintain support for mesothelioma patients at home and abroad. If you google the words “Mavis Nye and mesothelioma,” the search engine returns 6,800 hits!2 During this emergency, Mavis reported that Mesowarriors – most of whom were being shielded, as were Mavis and her husband Ray – were more in touch than ever via Facebook groups and twitter. After watching the government’s 5 p.m. daily briefings, they discussed the latest news and exchanged updates about the latest developments regarding hospitals, medical treatments and online shopping sites. Some of the patients reported that their chemotherapy and drug trials were continuing but many reported they had ceased. Mavis was, she said, “amazed at how positive the mood was” and how everyone was pulling together:
“Of course, we are all so frightened and many of us can’t sleep well. Unlike everyone else we can’t go out for an hour so the garden is being used and thank goodness that the sun is shining. We do wash our hands and the way I cope is that I see the virus on everything so I clean everything. I think some of us are becoming OCD; we just do not want this virus anywhere near us as we know we will not survive, our lungs are too damaged to cope with the virus.”
That these most vulnerable of patients need even more support in these unsettling times is self-evident. With remarkable speed and showing a breath-taking ability to adapt to changing circumstances, UK asbestos victim support groups began devising ways to continue serving their communities using familiar technology, the much-maligned and fast disappearing telephone landlines, newer platforms and social media apps. On Tuesday, March 24, 2020, Mesothelioma UK held its first-ever live Facebook Q&A to provide expert advice to patients and carers unable to reach their clinical teams. According to Mesothelioma UK’s Head of Services, Consultant Nurse Liz Darlison:
“Our key message to mesothelioma patients is to consider themselves amongst the most vulnerable and to shield themselves. Some of their treatments may be affected in the coming weeks, that’s unavoidable. Clinical teams will be weighing up the risk vs. benefits in every case and the provision of treatment will be dependent on multiple issues. Clinical trials have stopped for new patients for now. We are advising that whilst in isolation patients do everything possible to keep fit and stay connected to family and friends via all the means at their disposal and even join facebook, if they have not already done so, to maintain contact with Mesothelioma UK and others. Our information phone line, email service and facebook groups will remain fully open despite nurse team members being redeployed and operational team members all working from home.”3
According to Joanne Gordon, from the Derbyshire Asbestos Support Team and Chair of the Asbestos Victims Support Groups Forum UK, victims’ groups are “functioning in these difficult times, working by phone, email, post, mostly from home I believe.” In her email of March 25th, Joanne expressed:
“concerns over whether people will be diagnosed [with mesothelioma]. It could be difficult if treatment options and diagnosis make people vulnerable to the COVID-19 virus; we have already come across this. Also, we have been asking questions as to whether a signature is needed on Industrial Injuries Disablement Benefit and Workers' Compensation Scheme forms. Presently we believe it is although PIP [Personal Independence Payment] and Attendance Allowance forms for terminally ill patients do not need to be signed by the claimants; advisors sign on their behalf.”
In Liverpool, staff at the Merseyside Asbestos Victim Support Group (MAVSG) were initially taking it in turn to provide support for members from the MAVSG office but are now working from home on laptops which allow them to access emails and the group’s database. “Basically,” said MAVSG’s John Flanagan “we can provide the same service from home as we could working from the office. In his email of March 24, John added:
“We have redirected calls to our mobile phones and have informed all our clinicians that our services, particularly to mesothelioma and ARD [asbestos-related diseases] lung cancer patients are continuing as normal. The Department of Work and Pensions (DWP) have allowed some changes to their procedures in regard to the application forms for the vital welfare benefit entitlements for claimants/victims and in particular mesothelioma and lung cancer sufferers to ease this process. We thank all the staff at the DWP who have recognised the importance of our role while still complying with the social distancing which of course has stopped us carrying out house visits for victims.”
According to Lynne Squib, HASAG Asbestos Disease Support is working full-time to care for its community in the South of England, South East, London and Home Counties:
“Our team members are offering phone appointments to complete all benefit applications, we are still signposting to other services including solicitors, occupational therapy nurses, support personnel etc. We are applying for Blue Badges remotely and still liaising with the DWP for payments. We are offering ongoing support either by phone, email or social media. Lots of patients and their families are DMing [direct messaging] us for advice. We are also creating a FB [Facebook] group within our page; this will be used as a ‘virtual coffee morning.’ Patients that are connected with us on FB will be able to communicate with one another. We will invite Meso nurses and solicitors to join if they wish to answer any health or treatment queries. We may look into a FB live chat to help with loneliness. The long and short is, we are offering a full service even though it is not face to face.”
In a thoughtful and insightful response sent on March 26th Doug Jewell from Asbestos Support Central England explained the steps being taken in the Birmingham area to support the injured:
“The UK is now in a state of lock-down but even before this happened we had stopped carrying out home visits, usually one of the main functions of our group, and we had also cancelled our support group meetings both for patients and for those who have lost someone to an asbestos-related disease. All of these activities are being suspended for an indefinite period. This is being done primarily to protect those we would normally visit at home because the vast majority of them are in the most at-risk category from the virus and most have now been told to end all non-essential contact for at least twelve weeks.
Our advisors are continuing to offer help with the completion of Department of Work and Pensions (DWP) benefit applications and advice on seeking legal representation but this is being done by telephone and post rather than face to face meetings. For the future we are also looking into holding virtual support group meetings as a lot of the patients we are in contact with are feeling very isolated. In the meantime, our advisors are trying to call people and catch up with them by telephone.
It is still too early to tell how this pandemic will affect people who are only now beginning to show symptoms of an asbestos-related disease, especially mesothelioma. As we are all well aware the NHS is doing a brilliant job but it is already stretched and as the crisis develops we do not know what impact this will have in terms of appointments and the diagnostic process. We are also concerned that people may assume their symptoms are related to COVID-19 rather than an asbestos-related disease.
It is also too early to tell how this will affect people’s ability to access DWP benefits. At the moment the DWP staff who are dealing with Industrial Injuries Disablement Benefit applications are doing their best to continue processing claims as quickly as normal, especially in the case of an applicant who is terminally ill. However, the number of people applying to the DWP in general is increasing massively as the economic effects of the crisis begin to bite and this is likely to have a serious impact.
In addition to this, those patients suffering from non-malignant asbestos related diseases normally have to attend a medical examination, or have one carried out at home. These examinations have now stopped which means the Medical Services personal will be giving opinions based on the paper evidence. Our experience of the private firms who carry out these medical reviews is that if they do not have the evidence to hand they will advise that the application is refused, and this advice is almost always adhered to. This will mean some people missing out on the help they are entitled to and to a backlog as the number of appeals increases.
It is at times like this when you understand the impact of austerity on both the NHS and the DWP services. In these uncertain times we can only do what we can to assist while keeping those we are in contact with as safe as possible. Meanwhile our thoughts are constantly with patients and their families and with the amazing healthcare professionals who are doing such an outstanding job in these terrible times.”
Many of the medical consultants, respiratory specialists, lung cancer surgeons, specialist nurses and healthcare workers who had treated mesothelioma patients in the UK are now part of the NHS COVID-19 taskforce. Wishing them well in their endeavours, we can but hope that victims’ groups and cancer charities will able to provide essential support for their former patients. Anyone finding themselves in need, should reach out to the groups listed below.
Essential Contacts
Mavis Nye Foundation
Facebook: https://www.facebook.com/groups/432649193771341
Twitter: https://twitter.com/grandmamavis
Website: https://www.mavisnyefoundation.com/
Telephone: 01227282731
Mesothelioma UK
Freephone Information Line: 0800 126 2409 (Monday – Friday, 8.30am to 4.30pm)
Website: https://www.mesothelioma.uk.com/
Email: info@mesothelioma.uk.com
Social Media:
https://www.facebook.com/therealmesouk
https://twitter.com/mesouk
https://www.instagram.com/mesothelioma_uk/
https://www.youtube.com/channel/UCgtegolMlyD6QKYKjObZ_Fg
Derbyshire Asbestos Support Team
Telephone: 01246 380415
Email: mail@asbestossupport.co.uk
Asbestos Victims Support Groups Forum UK
Telephone (Joanne Gordon): 01246 380415
Website: http://www.asbestosforum.org.uk/index.asp
Merseyside Asbestos Victim Support Group
Telephone: 0151 236 1895
Website: https://mavsg.org/
Email: info@mavsg.org
HASAG Asbestos Disease Support
Telephone: 02380 010015/016
Email: Info@hasag.co.uk
Asbestos Support Central England
Telephone: 0121 678 8853
Website: http://www.asbestossupportwm.org/
Email: asbestosinfo@wmht.co.uk
Action on Asbestos
Telephone: 0141 552 8852
Website: https://www.clydesideactiononasbestos.org.uk/
March 30, 2020
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1 In her blog of March 19, 2020, Mesothelioma sufferer and campaigner Mavis Nye said: “We Mesowarriors are all shut up and some of us can’t even have our treatment. They are phoning or emailing us and I have a phone appointment in April so that I talk over how I feel.” In her March 24 upload, Mavis reported that her cancer treatment was “on hold.”
A diary of a Mesowarrior living through Mesothelioma: Doing as I am told and self-isolating. March 19, 2020.
https://rayandmave.wordpress.com/2020/03/19/a-diary-of-a-mesowarrior-living-through-mesothelioma-asbestos-doing-as-im-told-and-self-isolating/
Diary of a Mesowarrior Living With Mesothelioma Life Staying Home Alone. March 24, 2020.
https://rayandmave.wordpress.com/2020/03/
2 Nye, M. Mesothelioma Warrior. British Asbestos Newsletter. Issue 100, Spring 2016. Pages 16-17.
http://www.britishasbestosnewsletter.org/ban100_web.pdf
3 The next Live Facebook Q&A with Consultant Nurse Liz Darlison is scheduled for Tuesday, March 31, 2020. Questions can be submitted to: meso@sandstarcomms.com Also see Mesothelioma UK’s YouTube channel:
https://www.youtube.com/channel/UCgtegolMlyD6QKYKjObZ_Fg
