Hello everyone … I was hoping I’d be able to leave you alone for a few days but sadly, Matt Hancock and his department had other ideas (i really am so sorry for sending another update so soon).

Matt Hancock's team have obviously seen an influx of emails from you lovely people which now generates an auto response. The auto response says (and I paraphrase)

‘Don’t email me on this address if its to do with the NHS, you have to fill in an online form for this instead’.

If you have already emailed Matt Hanckock, that’s ace.. even though they say they won’t read them, i'm hoping a volume of emails might tug at someone in his teams humanity. SO its not a wasted task, and if you haven't emailed him yet, id still urge you to do so (as it was a 2 minute job).

To be honest we are overwhelmingly disappointed as this seems like a purposeful barrier in any attempt to make contact with / make change via the Secretary of State for Health and Social Care … (but that’s a fight for another day).

What we desperately need your help with:

Visit this link: https://contactus.dhsc.gov.uk/?openform

Select options: Start Now > Complaint > NHS Service

At this point it will say ‘Details of how etc etc… did this answer your query’ … Select: No. You will then be on a page with a simple form to complete.  The tricky bit here is we’ve had a note / word from the Department of Health saying (and I paraphrase)

‘If we get lots of forms filled in with the exact same wording, we will delete them and assume they are bot generated’.  

This is another kick in the gut as we like to try and make things as easy for people to be able to flag their concern. So, how do we get round this?

Box titled: ‘What is your query about’ – Come up with your own title.. key phrases to use would be ;Full body scans, no evidence of active disease verdict, NICE guidlines review, NHS LTP cancer ambition omission etc etc. 

Box titled: ‘Your Query’ –This section can only be 3000 characters long so keep that in mind, but, you can use one of the 3 options below as a starter for 10 and try swap some words or sentences about if you can to make each entry unique.

Obviously if you would rather free style your own query that’s amazing, but be sure to include the key ask which is: ‘We strongly urge you to perform a full review of NICE guidelines & the process by which patients are given a NEAD verdict to ensure a full body check is carried out prior to this verdict being issued.’ or words to that effect.

Then you just need to add your details and click submit! (it took me about 4 minutes in total)

Again, I am so sorry that this is an extra step / extra job we are asking of you… but we really really appreciate all your support and Gemma is sending you all a big hug from her hospice bed.

Thank you again and good health, light and energy to you all from Gemma and the team.

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Email options:

OPTION 1

Following disappointing response from MPs, I’m writing to ask that you urgently review the process & NICE guidelines relating to cancer patients being given the ‘No evidence of Active disease’ (NEAD) verdict & guidelines for frequency of surveillance scans. Also an addition to the existing NHS LTP Ambitions relating to cancer care (re NEAD verdicts) need to be made urgently. This cause has been highlighted via a petition Change.org/fullbodycheck with over 70000 signatures set up by Gemma Sisson & Daniel Clark-Bland, radio discussions & newspaper articles. BACKGROUND: Gemma was diagnosed with stage 3 Pelvic Cancer in Apr-18 (inc lymph nodes) & given the NEAD verdict in Jan-19. Only the affected & immediately surrounding area was scanned. In Jul-19 scans were reduced to 12 monthly. In Mar-19 Gemma started with chronic neck & back pain. After unsuccessful trips to her GP & A&E, she paid for an MRI in Aug-19 which showed her upper spine to be full of tumours, causing the collapse of her spine & identified as secondary stage 4 incurable cancer. This spread was not picked up on previous scans as the scans didn’t cover her full body. Had a full body scan been done the spread would have been picked up & could have changed the prognosis & saved the NHS thousands. Gemma is at risk of paralysis & will undergo regular chemotherapy until the cancer takes her life. This is not unusual; people are being led to believe that they’re cancer free but this is being given in many cases without a full body check. Despite unimaginable pain, continual treatment & an urgency to tick off bucket list items with limited time left, Gemma has is campaigning to highlight this issue & see procedural changes. Gemma’s strategy has seen thousands of people contact their MPs & the responses have been beige including sentences like: ‘NHS England & NHS Improvement have no current plans to review the process by which patients are given a no evidence of active disease verdict.’, ‘Going forward we must encourage clinicians to listen to patients concerns far more attentively but to do this we must sufficiently fund our NHS’, ‘I hope the Government will listen to the stories that have been told in support of the petition & reflect on its asks.’ With 1 in 2 in the UK likely to be affected by cancer & 33% of those on track to get secondary cancer we strongly urge you to perform a full review of NICE guidelines & the process by which patients are given a NEAD verdict to ensure a full body check is carried out prior to this verdict being issued. We know it won’t stop secondary cancers but it will improve chances that secondary cancers are identified earlier & outcomes for the patient & NHS being less severe. The financial impact of providing care in Gemma’s case is now in hundreds of thousands of pounds, this was avoidable. I would also urge you to reach out to Gemma & team to input to this process review to enable her to assist with positive, lasting change.

OPTION 2

I have contacted my MP regarding an urgent review of the process & NICE guidelines relating to cancer patients being given the ‘No evidence of Active disease’ (NEAD) verdict & the guidelines for the frequency of surveillance scans being reduced prematurely. Unfortunately, the response has been disappointing and I am therefore reaching out to you as the Secretary of State for Health and Social Care in the hope that you will make change happen. As detailed within a Change.Org (Change.org/fullbodycheck) petition signed by over 70,000 individuals, Gemma Sisson received a NEAD verdict after undergoing treatment for Stage 3 pelvic cancer that was also in her lymph nodes. However, in line with the current process, Gemma did not receive a full body scan to verify the NEAD and surveillance scans were reduced to every 12 months. Sadly, after 5 months of chronic back and neck pain and many visits to her GP & A&E for help, she paid for a private MRI scan which identified numerous tumours, causing the collapse of her spine & identified as secondary stage 4 incurable cancer. Had the process been different, resulting in a full body scan prior to the NEAD verdict, Gemma may not have been handed this life sentence and the NHS would not be spending the hundreds of thousands of pounds that is now the reality for her care alone. Despite daily pain and gruelling treatment cycles, Gemma is campaigning to make lasting change through an immediate review and positive amendment to the current process which will absolutely save lives and save money. I am backing this campaign and asking that you please prioritise this and make this common sense amendment to current policy.

OPTION 3

I am contacting you to urgently request a review of the process & NICE guidelines relating to cancer patients being given the ‘No evidence of Active disease’ (NEAD) verdict & the guidelines for the frequency of surveillance scans being reduced. I have contacted my MP directly on this matter but have received a very uncommittable and disappointing response. I am therefore raising it directly with you as the Secretary of State for Health and Social Care and the one that is ultimately accountable for making this change. As highlighted via the immense response to Change.org/fullbodycheck petition which has been signed by over 70,000 individuals.

Full body scans are not currently carried out prior to a NEAD verdict which is resulting in secondary cancers going undiagnosed and therefore untreated until it is too late. People are dying as a result of this catastrophic process failure and the NHS is spending thousands more than should be needed. Sadly, Gemma is facing a battle with secondary cancer that will ultimately take her life. This may not have been the verdict had she received a full body scan and more frequent surveillance.

I am urging you to please review the details of this in-line with the petition detailed above and engage with Gemma Sisson and her team to enable her to make positive, lasting and necessary change.