A MUM has written to the chief executive of NHS England calling for him to stop delaying the decision and sanction a crucial treatment for her three-year-old son’s spinal condition.

Irvana Davies, 33, from Rochford, is calling on the NHS to fund Spinraza treatments for people with Spinal Muscular Atrophy (SMA), a genetic muscle wasting condition that her son Oliver lives with.

Echo:

Protest - campaigners calling for Spinraza to be sanctioned by the NHS in Manchester including Irvana

It affects the nervous system which controls voluntary muscle movement and makes the muscles weaker over time and causes movements to be delayed.

Mrs Davies has recently completed fundraising challenges for a new powered wheelchair for Oliver for when he starts at Ashingdon Primary School in September.

On March 6, she joined hundreds of other families in a protest in Manchester outside the National Institute of Health and Care Excellence centre calling on them to allow the drug Spinraza to be introduced.

The drug was first approved in the United States in December 2016, and in the EU in May 2017, but is not allowed in the UK, as it is deemed too expensive to provide.

It works by slowing a patient’s muscle wastage and making it easier for them to move.

In her letter to Simon Stevens, which has been seen by the Echo, Mrs Davies said campaigners were due to hear a decision from the NHS about introducing the treatment last week, but the announcement has been delayed.

She said: “I am extremely disappointed that the moral compass of the institution which is responsible for life is completely absent.

“We have been waiting now for over two years for a decision to be made whilst hearing of other countries around us confirm their approval to fund Spinraza for their people.

“In this country euthanasia is illegal. However, the situation at present in respect of these delays is exactly what NHS England are performing with the SMA community.

“You may consider this an extreme accusation but it is very simple and one I stand by wholeheartedly. NHS England are responsible for the deterioration of life and loss of life whilst this treatment is not approved and must accept responsibility for their actions.

“Oliver will be four in May. He is clever, articulate, funny and cheeky and we are incredibly proud of him. Oliver is a full time wheelchair user and will be starting school in September.

“Oliver is unable to stand and he struggles to hold anything heavier than a full cup of water because of the deterioration SMA had caused to his muscles already.

“We worry that just holding hands with another child in play could result in a broken arm.”

Mrs Davies said if Oliver is not given treatment, his siblings Emilia, eight, and Thomas, five, could suffer mental health problems as a result of his condition.

She added: “My son matters, he is important and deserving and the NHS is responsible to keep him well. I believe the decisions so far have been akin to manslaughter by ignorance and by denying treatment NHS England are responsible for the deaths of SMA sufferers.”

NHS England was contacted for comment.