Hello everyone …

We've now had word back from quite a few MPs … and to be honest … the responses are limp at best!

As expected, each political party has produced their own standard response to our emails which direct us to NICE (National Institute for Health and Care Excellence) Guidelines and the NHS Long Term Plans in relation to cancer care ambitions.

In summary, these responses demonstrate that the MPs have not really grasped what the ask is nor are they demonstrating any real desire to help with the fight for change.

So now … we need your help to go straight to the Secretary of State for Health and Social Care

(as well as initiating a fresh round of media coverage and specific meetings with Gemma’s MP / The Shadow Secretary of State for Health).

Its really easy to help (less then 2 minutes of your time):

Below is a letter for you to copy and paste in to a new email to Matt Hancock (Don’t forget to add your name and address at the bottom) and his email address (no other searches needed).

If as many of us can email Matt and encourage as many people as we know to do the same, eventually they will have no choice but to consider a more adequate response. Let's see if Matt is as dedicated to the NHS fight against cancer as his promotional photo would suggest!

If you have any problems or if there is anything we can do to help, please pop us an email at: changeforgemma@hotmail.com

Thank you so much as always for your time and support from Gemma and the team.

---------------------------------

To: matt.hancock.mp@parliament.uk

Title: Serious issues in the process around cancer patients being given the ‘No evidence of Active disease’ verdict

Text for email:

Matt,

I hope this email finds you well.

Following email correspondence with my MP that concluded in a particularly limp response from NHS England, I am writing to you directly to ask that you urgently review the process  and NICE guidelines relating to cancer patients being given the ‘No evidence of Active disease’ verdict and the guidelines for which frequency of surveillance scans are reduced. I would also add that an addition to the existing NHS LTP Ambitions relating to cancer care (specifically relating to NEAD verdicts) also need to be made urgently.

This cause has been highlighted via an emotive and valuable petition on change.org  (Change.org/fullbodycheck) that has over 70,000 signatures  set up by Gemma Sisson and Daniel Clark-Bland, by several radio discussions and newspaper articles on this topic.

Gemma’s Background

Gemma was diagnosed with Pelvic Cancer in April 2018 and given the ‘no evidence of active disease’ (NEAD) verdict in January 2019. However only the affected and immediately surrounding area was scanned even though the cancer was in Gemma’s Lymph nodes and already at stage 3. In July 2019 Gemma’s surveillance scans were reduced to every 12 months.

However, from March 2019 Gemma had been suffering 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 her spine. This was then identified as secondary stage 4 incurable cancer.

This spread of cancer was not picked up on any of the previous scans, as the scans didn’t cover her whole body. Had Gemma received a full body scan in July 2019 (or earlier) the spread would have been picked up and could have changed the prognosis for Gemma (and in turned enabled the NHS to avoid thousands of pounds in cost). Gemma will now be at risk of paralysis and will undergo regular chemotherapy until the cancer ultimately takes her life.

Sadly Gemma’s case is not unusual, people are being led to believe that they are cancer free but this information is being given in many cases without a full body check being given (based on the comments and emails recieved from some of the 70,000 people that have signed Gemma's petition.

Action in the face of adversity

Despite unimaginable pain, continual cycles of radiotherapy, chemotherapy and physio therapy and an urgent need to ‘tick off’ bucket list items with the limited time she has left, Gemma has started a campaign to highlight this issue and is determined to see procedural changes made in this area.

Gemma’s strategy has seen thousands of people contact their MPs and the responses have been beige including sentences like:

* ‘NHS England and 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 and reflect on its asks.’

Quite frankly, this is not good enough.

What we need from you as the Secretary of State for Health and Social Care:

With 1 in 2 of us in the UK likely to be affected by cancer and then 33% of those people on track to get a secondary cancer diagnosis we strongly urge you to perform a full, 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.

Whilst Gemma is 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. TO be clear, the financial impact of providing care in Gemma’s case alone is now in the hundreds of thousands of pounds… much of which was avoidable.

I would also like to urge you to reach out to Gemma and her team to input in to this process review to enable her to assist with positive, lasting change.

Yours Hopefully

**Add your name and address here**