Invite your MP on Tuesday 29th June: Online parliamentary event on MDS & other rare cancers

Parliamentary Event relevant to MDS – Do you C us?

  • Date & Time: Tuesday 29th June 2021 at 2pm
  • Platform: virtual meeting via Zoom

A great opportunity to alert, and involve, your MP to the needs of patients with rare and less common cancers!

The ‘Do You C Us?’ campaign aims to amplify the voices of people living with rare and less common cancers.

Rare and less common cancers comprise 47% of all cancer diagnoses

The wide list of rare and less common cancers includes all cancers except for the four most ‘common’ (breast, bowel, lung and prostate).

There can be a lack of awareness of the difficulties of those living with these cancers, including recognising symptoms, obtaining a diagnosis, receiving the correct treatment, and getting appropriate levels of support. There are also the additional challenges presented by the COVID-19 pandemic, and the need to encourage people to ask to see their GP if they have concerning symptoms.

This is why the ‘Do You C Us?’ campaign was launched: to raise awareness and support change on behalf of those living with rare and less common cancers.

What are we asking from government and MPs?

This is what we will ask:

  1. In the NHS Long Term Plan, the NHS committed to diagnosing 75% of all cancers at stage 1 or 2 by 2028. In order to meet this target, improvements are required across all cancers – including rare and less common cancers.
  2. Work should be undertaken to identify people 'missing' from the system, including people with rare and less common cancers. People must be reassured that it is safe to come forward for treatment.
  3. Cancer must remain a Government priority. Cancer services and the cancer workforce, including those for people with rare and less common cancers, should receive sufficient investment and funding for the future. This must be set out in the next Comprehensive Spending Review.

The event will be chaired by Paul Bristow, MP and will provide an opportunity for policy makers to learn more about the key challenges facing those living with rare and less common cancers. It will also provide an avenue to discuss appropriate measures we can take to improve care through greater collaboration with policymakers.

This event is a non-promotional event organised and funded by Pfizer UK. The campaign is led by a partnership of Pfizer UK and Cancer52, an alliance of nearly 100 cancer charities. It is funded by Pfizer UK, but all decision-making regarding the content and materials used is taken jointly by both organisations.

IMPORTANT for our MDS community

MDS will feature heavily, as Kes Grant, one of our MDS UK Committee Members, was chosen to present her MDS story!

Many of you will be familiar with Kes, who is very active on social media, and through her regular blog: Where angels fear to tread

Watch Kes' story:

Please alert your MP and invite him/her to attend the event

Parliamentary Event: Do you C us?

Date & Time: Tuesday 29th June 2021 at 2pm

Further details for MP’s: If you have any queries, or to attend, please contact either jennifer@brightertogetherconsulting.co.uk or laura@brightertogetherconsulting.co.uk

Best to invite your MP via an email to the constituency, but also via social media, if you use it.

Don’t forget that family members can invite their MP as well.

It is an opportunity to raise issues such as late diagnosis, lack of a dedicated Clinical Nurse Specialist, lack of access to the oral chelation drug Exjade in some parts of the UK – which is a complete anomaly - or any other aspect you have struggled with.

MDS is truly the ‘Forgotten Cancer’, as parts of PHE (Public Health England) are reluctant to run Quality of Life and Satisfaction surveys with MDS patients, fearing that these patients may not have been told that MDS is a blood cancer. We need to run such surveys to obtain change in services and improvements regarding chronic understaffing.

Thank you for your support.

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