We ask all MDS patients who have NOT received a letter from the NHS to self-report
In their most recent update from the 7th May 2020, NHS England have added MDS (Myelodysplastic Syndromes) specifically, to the government list of highly vulnerable people who should be shielding, isolating – and be receiving an official Vulnerable Letter.
It appears that many cancer patients have not yet been included in the Government list of extremely vulnerable patients.
These patients will therefore not have received the special "Extremely vulnerable patient" letter from NHS England.
This is causing serious confusion for many people, and resulting in a lot of calls to hospitals and charity helplines from patients seeking clarification.
It is also preventing vulnerable people from accessing the protected online supermarket shopping slots for home delivery.
To assist the government to update this list - we ask all MDS patients who have NOT received a letter, to self-report.
How to self-report and be included in the list of extremely vulnerable people
You can register yourself, or on behalf of someone else, ONLINE, by clicking on the link below
WHEN YOU CLICK ON START YOU'LL GET TO THE REGISTRATION FORM THAT LOOKS LIKE THIS. FOLLOW THE INSTRUCTIONS. IT IS A VERY FRIENDLY FORM.
This will signal to the government which categories of patients still need to be added to the vulnerable list.
We are also asking online supermarkets to relax the criteria to allow patients without this letter to get deliveries at home.
If you have MDS – Myelodysplastic Syndromes – and have queries about the NHS letter – call MDS UK on 02077337558 (blood cancer patients only).
Please spare the clinical staff who are overwhelmed with calls and emails.
Advice is: If you have MDS – do follow the guidance for vulnerable people.
Do self-isolate and shielding precautions.
If you need support for food delivery, or require the NHS letter - call the GOVERNMENT Coronavirus (COVID-19) helpline - 0800 028 8327
Follow the guidance in our Advice letter. Here is a Summary:
- All MDS patients are considered vulnerable - so stay at home, self-isolate.
- If you need Government coronavirus assistance and support (and have no support from family or friends, and no internet access):
Government Coronavirus support line - Telephone: 0800 028 8327
Or register here to self-report as “vulnerable”: https://www.gov.uk/
- If you feel unwell with COVID symptoms, either call the hotline contact number for your clinical team if available, or access NHS 111 online, or call NHS 111.
- If you are unwell for any other reason related to your MDS then contact your haematology clinical team as you would normally.
DO NOT attend hospital unless you are told to by the hospital staff.
- Food: we are still awaiting the government plans, but in the meantime, ask a neighbour, family member or friend to shop for you.
If you have a smartphone – download and register with the Next Door app – which connects you to neighbours offering help.
- COVID buddy: please make sure you have someone who knows about you and your condition, who can check in on you regularly by phone/skype etc., you can also do the same for them.
- Mental health and well-being, advice here: https://www.nhs.uk/oneyou/