Spinal muscular atrophy is a terrible condition that causes weakness of the muscles and problems with movement, writes Gloria De Piero MP
There is no cure, but now a new drug called Spinraza could transform the lives of those with the condition.
The National Institute for Health and Care Excellence (NICE) has not yet recommended Spinraza for use on the NHS because of uncertainties about its long-term effectiveness and it cost.
The Chad reported last week about how the family of four-year-old Sutton girl Elsie Novell are campaigning for her to be given Spinraza.
I have been contacted by other constituents who also want to see this drug made available to them.
I have written to NICE and the Health Secretary on their behalf, raising their concerns, and have also co-signed a letter from MPs, urging NICE to consider allowing a managed access arrangement.
Anxiety can be a crippling condition to live with, making going out and about on everyday business extremely difficult.
A lady from Ashfield who suffers with depression and anxiety got in touch with me after a bad experience with the Department for Work and Pensions (DWP).
She had had to go for a PIP assessment and was late after having an anxiety attack on the bus.
The woman she saw told her off, and then following the assessment, she wasn’t told how to get out of the building, leading to another anxiety attack.
I complained to the DWP on her behalf and the PIP team sent her a letter apologising, and I hope that in future they might show a little more understanding.
A gentleman from Sutton, who was in hospital after having a stroke, got in touch with me because, although he had a suitable care package, was struggling to find out what financial support the county council could give him.
His phone messages were going unanswered but he was keen to get back in his own home.
I contacted the council to see what was happening and they called him immediately and he has now secured the care he needs.