Dear Delyth,

In the absence of any consistent reassurance from NHS or Third Sector sources, the members of METUPUK feel compelled to write to you to ask what specific steps are being taken to support ALL patients with secondary breast cancer (SBC) during the COVID-19 pandemic.

We are aware an email has been received by some patients today from Breast Cancer Now in response to the many concerns raised directly with BCN about the detrimental impact of Covid-19 on breast cancer treatments (Primary and Secondary). We are also aware from this email it is reported BCN are working with NHS England, the National Institute for Health and Care Excellence (NICE) and the Association of Breast Surgery to help shape rapidly emerging clinical guidance, in addition to producing dedicated patient and health information on coronavirus for people affected by breast cancer.

We acknowledge the critical and worsening situation across the country in relation to COVID-19 and the urgent need to mobilise NHS resources. As BCN’s email records there is evidence clinical trials are either stopping recruitment or not opening to existing patients as research labs are closing. In addition to this, cancer treatments and scans are being delayed or put on hold.

As patients living with advanced disease, we already face a very uncertain future, and are increasingly anxious. The situation will realistically worsen through the COVID-19 crisis and it is highly likely some of us will die as an indirect consequence of the pandemic, particularly when vital scans, treatments and clinical research are delayed. We have numerous examples of treatments/scans/trials being delayed/stopped and are happy to provide you with further information as required particularly in respect of the impact on SBC patients.

We are aware organisations such as Mencap raised concerns in respect of NICE’s emergency critical care guidance and NICE revised its guidance on the 2nd April with the guidance stating, ‘the frailty scale should never be used to assess those with a learning disability’. We have not however seen any challenge or support for those of us with SBC. Denying those of us who are living well and may live for many years to come is a breach of our human rights.

Although the recent legal challenge to the application of the clinical frailty scale has resulted in a shift to NICE COVID-19 guidance, and offers an individualised assessment to determine a person’s (under 65 years) critical care pathway, the algorithm continues to indicate a difference in approach. There remains the issue that even an individualised assessment could score stage IV cancer patient’s high, as co-morbidities and underlying health conditions must be considered in all cases. Despite the absence of physical frailty for many SBC patients, this approach continues to risk access to critical care, if required. You are aware that some of us are living very physically well with SBC and are fit. We are concerned that should we contract COVID-19 assumptions will be made about us around our ‘terminal’ diagnosis. As we have advanced cancer we would most likely be triaged to the most vulnerable group – this could put people who are #BusyLivingWithMets below people who are bedridden, and result in us not receiving critical care.

Therefore, we are urging you to gain some clarity, on our behalf, from government and the NHS to provide assurance that we will be treated fairly and supported. We are described as one of the most critical and vulnerable groups who should be protected from COVID-19. Yet should it come to a choice under the frailty scale or prioritisation of treatment we are at risk of losing life-saving equality and protection.

We understand this is a global crisis and difficult choices will have to be made, but we cannot accept decisions could be made based on estimated and out of date prognoses. We deserve better and we urgently need your support to help us live longer through the pandemic. We request action in the following areas:

• Should we contract COVID-19, treat us as individuals and do NOT make assumptions about our care based on our ‘terminal’ cancer prognosis
• To ensure ongoing access to SBC treatments and treatment planning – no delays
• To provide consistency of approach across oncology departments around the UK
• To give SBC specific information in the context of COVID-19 response planning
• To ensure SBC trials continue to recruit patients
• Can you confirm what work is being completed for patients living in Scotland, Wales and Northern Ireland as the BCN email refers only to NHS England and METUPUK have several people receiving treatment and living in other parts of the UK

In summary, the government is justifying measures to help the most vulnerable patients but then leaving secondary breast cancer patients with less or no treatments/clinical trials.

We hope you will respond to the concerns we raise quickly and efficiently, given the speed of the virus spread and its impact on NHS services. We also would like a specific update in relation to the points raised above in respect of SBC patients.

Yours sincerely,

METUP UK

15th April 2020

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We now have a CTA – Call To Action 

Please copy and paste this to a word document and complete the parts in red and then you can send this to your MP either by email or send this to them.  If you email this then cc METUPUK@gmail.com and Breast Cancer Now

Your Politicians Name Your Address

Date

Dear Politicians Name,

In the absence of any consistent reassurance from the NHS or third sectors I feel compelled to write to you to ask what steps are being taken to support ALL patients with metastatic breast cancer during the COVID19 pandemic.

I am fully aware of the critical and worsening situation across the country in relation to COVID19 and the urgent need to mobilise NHS resources. However, I have seen evidence clinical trials are either stopping recruitment or not opening to existing patients as research labs are closing. In addition to this, cancer treatments and scans are being delayed or put on hold. The BMJ posted the following blog https://www.bmj.com/content/368/bmj.m1172 which supports our anecdotal experience.

PLEASE ADD IN HERE IF YOU HAVE HAD EXPERIENCE OF YOUR CANCER TREATMENT/SCANS/CONSULTATIONS BEING STOPPED/PUT ON HOLD.

STATE IF THIS DECISION WAS MADE IN CONSULTATION WITH YOU OR WHETHER THIS DECISION WAS TAKEN WITHOUT CONSULTING YOU.

DO YOU AGREE WITH THE DECISION MADE- I.E (IN YOUR VIEW) DOES THE RISK OF CONTINUING YOUR TREATMENT IN THE CURRENT COVID-19 SITUATION OUTWEIGH THE BENEFIT, OR ARE YOU STRICTLY SELF ISOLATING AND THINK THE RISK IS MANAGEABLE GIVEN THE NEED TO CONTINUE WITH TREATMENT DUE TO A LACK OF STABILITY OR A NEED TO ENSURE STABILITY CONTINUES ETC.

STATE WHAT THE IMPACT IS ON YOUR CURRENT DIAGNOSIS/TREATMENT PLAN AND/OR PROGNOSIS IF YOUR TREATMENT IS DELAYED/STOPPED.

PLEASE STATE WHICH HOSPITAL AND NHS TRUST YOU ARE UNDER.

As a patient living with advanced disease, I already face a very uncertain future, and am increasingly anxious. The situation will realistically worsen through the COVID-19 crisis and it is highly likely some of us with SBC will die as an indirect consequence of the pandemic, particularly when vital scans, treatments and clinical research are delayed. We have numerous examples of treatment being delayed/stopped and are happy to provide you with further information as required.

I am aware organisations such as Mencap raised concerns in respect of NICE’s emergency critical care guidance and NICE revised its guidance on the 2nd April with the guidance stating, ‘the frailty scale should never be used to assess those with a learning disability’. I have not however seen any challenge or support for those of us with SBC. Denying those of us who are living well and may live for many years to come is a breach of our human rights.

Although the recent legal challenge to the application of the clinical frailty scale has resulted in a shift to NICE COVID-19 guidance, and offers an individualised assessment to determine a person’s (under 65 years) critical care pathway, the algorithm continues to indicate a difference in approach. There remains the issue that even an individualised assessment could score stage IV cancer patient’s high, as co-morbidities and underlying health conditions must be considered in all cases. Despite the absence of physical frailty for many SBC patients, this approach continues to risk access to critical care, if required. You should be aware that some of us are living very physically well with SBC and are fit. I am concerned that should we contract COVID-19, assumptions will be made about us around our ‘terminal’ diagnosis. As we have advanced cancer we would most likely be triaged to the most vulnerable group – this could put people who are #BusyLivingWithMets below people who are bedridden, and result in us not receiving critical care.

Therefore, I am urging you to gain some clarity, on my behalf, from government and the NHS to provide assurance that I will be treated fairly and supported. Those of us with SBC are described as one of the most critical and vulnerable groups who should be protected from COVID-19. Yet should it come to a choice under the frailty scale or prioritisation of treatment we are at risk of losing life-saving equality and protection.

I understand this is a global crisis and difficult choices will have to be made, but I cannot accept decisions could be made based on estimated and out of date prognoses. I deserve better and I urgently need your support to help me and those of us with MBC live longer through the pandemic. I request action in the following areas:

• Should I contract COVID-19, treat me as an individual and do NOT make assumptions about my care based on my ‘terminal’ cancer prognosis
• To ensure ongoing access to SBC treatments and treatment planning – no delays
• To provide consistency of approach across oncology departments around the UK
• To give SBC specific information in the context of COVID-19 response planning
• To ensure SBC trials continue to recruit patients.

In summary, the government is justifying measures to help the most vulnerable patients but then leaving secondary breast cancer patients with less or no treatments/clinical trials.

I hope you will respond to the concerns I have raised quickly and efficiently, given the speed of the virus spread and its impact on NHS services.

Yours sincerely,

Your name and signature

Date

*******PLEASE ANONYMISE A COPY OF YOUR COMPLETED LETTER AND EMAIL TO metupuk@gmail.com

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