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.

We have received many calls from MDS patients and members, reporting that they had not received a Highly Vulnerable letter.

Some patients were even told by their GP’s that no isolation or shielding was necessary for MDS, as this disease was not on the official NHS England list of Extremely Vulnerable people.

MDS UK has been reporting these facts to NHS England directly, via the very helpful weekly conference calls set up by NHS England with all cancer charities, to gain feedback and ensure no issues are missed.

We thank Professor Peter Johnson and David Fitzgerald, who are running these conference calls.

In their most recent update from the 7th May 2020, NHS England have now 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.

The document below is a direct request from NHS England to Cancer Alliance Leadership teams, to ensure all relevant patients are added to the official list of Vulnerable people, and be sent the letter to anyone who has not yet received one.

The new list avoids any possible doubt that MDS patients must shield, isolate and are entitled to government support

The image below is the new revised list of shielding groups, which includes MDS explicitly, to avoid any possible doubt that MDS patients must shield, isolate and are entitled to all government support.

This means:

Shopping Online

This will hopefully make it easier to get a preferential online shopping slot with supermarkets.

Alternatively, you can also make use of the smartphone app “Next door” which connects you to many people in your neighbourhood. Many people there are offering to help with shopping and various errands.
Or – NHS staff can request the NHS volunteers to assist you, via the GoodSam network. Any NHS staff can make such referrals to GoodSam for you, for shopping, errands, delivery of medication etc

Employment rights, return to work requests

This will also help clarify the situation for employers potentially requesting their employee with MDS to return to work as lockdown is starting to be eased.

If the work environment is not making it possible to isolate from other employees, or is not deemed safe enough, or if travel to work requires public transport for example, MDS patients can use this Vulnerable Letter to explain they are unable to return to normal work as early as non-vulnerable employees.

Patients and employers can contact HSE Health and Safety Executive (Sarah Albon) in case clarifications or assistance is needed in these circumstances.

Coronavirus Downing Street Briefing on the 12/05/2020: Vulnerable Groups will need to maintain shielding and isolation

This briefing clarified that people in the Vulnerable Groups will need to maintain shielding and isolation, beyond the official 12 weeks isolation for healthy individuals, and beyond the 15th June.

It was stated that it is not possible as yet to predict when people in the Vulnerable Groups will be able to relax the isolation and shielding measures.

The end of isolation for vulnerable people will need to be reviewed at a later date.

We will of course follow up and provide news as they come through.

We will keep in close contact with MDS experts – who will issue further guidelines as soon as relevant.

Stay home, stay safe

MDS UK

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