Hi folks, 

I hope everyone is safe, well and had a restful festive break.

Following the submission of anonymised data to support this campaign to Jeremy Hunt (chair of the health and social care sub committee) its really important we keep the pressure and focus on.

So i'd be really grateful if you could send the below email to your MP to ask them to contact Jeremy and Sajid (for good measure).

I know many of you will have contacted them before, but, this really is a marathon and all your support is much appreciated. 

You can check for your MPs name and email address here: https://members.parliament.uk/FindYourMP

Once you have it (and have opened a new email with their details in), please copy and paste the below (the only things to change are their name and your name :))

***************************Email template below************************

** MPs Name **,

I hope this email finds you well.

I am writing to you, on behalf of the #ChangeForGemma campaign that represents six families in the North of England, to ask for your support in asking the Secretary of State for Health and Social Care to collaboratively conduct an urgent review in to the process and NICE guidelines relating to cancer patients being given the ‘No evidence of Active disease’ verdict and the guidelines for the frequency and coverage of surveillance scans.

This is also a request for you to contact the Chair for the health and social care committee to reiterate the importance of including this in the ongoing inquiry in to cancer services in the UK, and to ask him to engage with the campaign team.

If you are unaware, the campaign has been highlighted via:

·         A petition on change.org  (Change.org/fullbodycheck) that has over  159,793 signatures  set up by Gemma Sisson and Daniel Clark-Bland (as at 23rd Jan 2022);

·         Several radio discussions;

·         Several national and local newspaper articles;

·         Numerous letters to various MPs across the country;

·         Numerous meetings with MPs across the country;

·         5 escalations directly to the DoH / the previous Secretary of state for Health and Social Care Matt Hancock.

So far, the replies from DoH / Matt Hancock were dismissive, unhelpful and ‘circular’ in their references. This means that since the campaign started great progress has been made in building awareness, but no progress has been made in turning this in to meaningful action.

The Background

Gemma Sisson (later Sisson-Moore – 2 months before she passed away) was diagnosed with Pelvic Cancer in April 2018 and given the ‘no evidence of active disease’ (NEAD) verdict in January 2019. However, at the time the NEAD verdict was given, only the affected and immediately surrounding area was scanned even though the primary cancer was not diagnosed quickly, was present in Gemma’s Lymph nodes and already at stage 3. In July 2019 Gemma’s surveillance scans were reduced to every 12 months and she was effectively discharged.

However, in March 2019 Gemma started to suffer with chronic pain in her neck and upper back. After several unsuccessful visits to her GP and A&E, a private physio recommended she paid for a private MRI. The private scan took place in early August 2019 and showed her upper spine to be full of tumours which were causing the collapse of a number of vertebrae. This was then identified as secondary stage 4 incurable cancer. Between August 2019 and April 2020 Gemma endured invasive surgery, 8 rounds of chemotherapy and endless pain before being told her illness was terminal in April 2020. Gemma moved in to a hospice in May 2020 and passed away on the 22nd July 2020 aged 39.

This spread of cancer was not picked up on any of the previous scans as they did not cover her whole body. Had Gemma received a full body scan in July 2019 (or earlier) the spread would have been identified, her treatment reinstated which would have changed the prognosis for Gemma. In turn, this could have enabled the NHS to avoid thousands of pounds in costs by removing Gemma’s need for multiple A&E and GP appointments, invasive and complex surgery cost and additional care costs. It would also have avoided Gemma spending her last 5 months immobile (through fear of paralysis).

Sadly, the sequence of events (primary cancer treatment, reduction in surveillance scans, presenting symptoms of a secondary cancer and these being overlooked, receiving an all clear and THEN secondary cancer being identified) are not uncommon.

Through the campaign five other families have come forward and explained that their loved ones (Emma Hoult, Annette Prest, Julie Thompson, Suzanne LeBonne, Matthew Bannaghan) experience was the same.

Statistically speaking, this suggests it’s more common than my reach could quantify. From a humanist perspective, this is dire, distressing and totally avoidable. And from an NHS perspective it’s inefficient, costly and totally avoidable.

The ask

We are looking for support, it’s as simple as that.

I am looking to you to contact the Secretary of State for Health and Social Care as well as Chair of the Health and Social Care Committee  to ensure that they understand the importance of performing a collaborative and comprehensive review of the NICE guidelines and the process by which patients are given a ‘No evidence of active disease’ verdict to ensure a full body check is carried out prior to this verdict being issued and to ensure the logic aligns to reductions in surveillance scans (in certain circumstances).

We say collaborative because we want to be part of the solution. We want our experience to help inform the review and subsequent changes. We want to help.

For the avoidance of doubt, we are clear it isn’t possible (or necessary) to give ALL patients a full body scan and more frequent surveillance scans after a primary cancer, but we are clear that there should be some more robust  guidance for which circumstances this should be the case (delay in initial diagnosis, present in ‘super spreader’ cells etc).

Whilst Gemma was clear it won’t stop secondary cancers occurring, it will improve the chances that secondary cancers can be identified earlier and the outcome for both the patient and the NHS being less severe. With 1 in 2 of us in the UK likely to be affected by cancer and then 33% (and increasing) of those people on track to get a secondary cancer diagnosis… I agreed with her wholeheartedly.

The campaign team are desperate for them to reach out and contact them so that they can answer any questions, provide further info and ultimately input in to this process review so that some good can come from this situation.

Yours sincerely 

** NAME **