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Preston woman calls for rare conditions to be added to the NHS shielded patients list

Posted on - 3rd April, 2020 - 12:00pm | Author - | Posted in - Health, People, Preston News
Danielle France
Danielle France

Danielle France from Preston has a rare blood condition called autoimmune neutropenia. This makes her vulnerable to infections.

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People most at risk from coronavirus are called ‘shielded’ or ‘extremely vulnerable’ people. These patients should have received a letter from the NHS by 30 March. NHS Digital has published a shielded patients list which enables partner organisations across government to support and protect those who need shielding at this time.

However, Danielle hasn’t received a letter from NHS England, which would recognise her as being a person who is most at risk.

She believes her condition isn’t recognised due to a lack of awareness.

Danielle said: “Autoimmune neutropenia is so rare, only around one in 1.5 million adults have it and there is not much awareness around it. The condition is more common in children and very rare in adults.

“I am vulnerable to subsequent infection and high risk for sepsis. So, if I develop bacterial pneumonia as a result of COVID-19, I cannot fight it off as my neutrophils are so low.”

Without the letter as proof, Danielle and others like her aren’t getting any help from supermarkets or even pharmacies.

She said: “We are really struggling to get support – I can’t get a food delivery slot and cannot go out to shop. A supermarket I tried to book with didn’t recognise me as vulnerable when I logged in. Even though every single one says they are prioritising the vulnerable – how?

“I have had a telephone consultation with my haematology consultant, who has been fantastic, and they advised me I need to be shielding for 12 weeks. I cannot fault Blackpool Macmillan centre for everything they do for me, they are brilliant.”

Read more: Preston joins the nation in Clap for our Carers

Most people with autoimmune neutropenia also need regular medication, which has to be injected. Danielle says they are struggling to get to the appointments due to the worry about using public transport and exposing themselves to the virus.

Danielle has found some support online where others with similar conditions haven’t made it on to the shielded patients list either.

She said: “I am in a few groups but the main one is UK Neutropenia Support. A large amount of us haven’t received letters, including one person who is also a transplant patient. However nearly all of us have been advised we are high risk and need to shield.

“I have been sharing a lot on Facebook about the condition and also emailing various news programmes to raise awareness.”

According to the NHS Digital website: An updated NHS shielded patient list will be generated by NHS Digital every day, incorporating additional patient lists from hospitals and any additional cohorts of patients, advised by the Academy of Medical Royal Colleges. It will also be produced weekly each Monday evening, incorporating updated feeds from GP systems (from 6 April).

Read more: The Preston restaurants feeding our NHS heroes during the coronavirus crisis

Do you suffer from the same condition as Danielle? Or do you have a condition which isn’t being recognised but you feel that you are at risk? Please let us know in the comments below.

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