PM backs sup­port plea to aid mus­cu­lar dys­tro­phy

Theresa May pushed by Che­sham and Amer­sham MP to help suf­fer­ers in the UK

Buckinghamshire Advertiser - - NEWS - by TOM HER­BERT tom.her­bert@trin­i­tymir­ror.com Twit­ter: @TRHer­bert

THE Prime Min­is­ter has backed calls to make sup­port avail­able to peo­ple with mus­cu­lar dys­tro­phy fol­low­ing a young boy’s fight for pi­o­neer­ing treat­ment.

Che­sham and Amer­sham MP Cheryl Gil­lan pushed Theresa May at Prime Min­is­ter’s Ques­tions for an­swers on whether suf­fer­ers of the dis­or­der, like Archie Hill from Chal­font St Peter, will have ac­cess to sup­port un­der a new­born screen­ing pro­gramme.

Archie Hill, 11, and his fam­ily, from Chal­font St Peter, suc­cess­fully fought for ac­cess to life-chang- ing mus­cu­lar dys­tro­phy drug Translarna last year.

The Hills have also spo­ken about the need for the right psy­cho­log­i­cal sup­port for peo­ple liv­ing with Duchenne mus­cu­lar dys­tro­phy, a dev­as­tat­ing mus­cle-wast­ing con­di­tion which cur­rently af­fects around 2,500 peo­ple in the UK.

The Prime Min­is­ter agreed on the need for ap­pro­pri­ate psy­cho­log­i­cal sup­port and flagged the work that Mus­cu­lar Dys­tro­phy UK is do­ing with NHS Eng­land to bet­ter un­der­stand what is needed.

While there is not yet an ef­fec­tive new­born test for the dis­ease, rapid progress has been made in re­cent years, and Muscu- lar Dys­tro­phy UK is hop­ing it could be made avail­able through the na­tional New­born Screen­ing Pro­gramme soon.

The char­ity is cam­paign­ing for the NHS to de­velop the right psy­cho­log­i­cal sup­port be­fore screen­ing be­gins to en­sure that fam­i­lies are sup­ported through the dif­fi­culty of di­ag­no­sis and plan­ning for the fu­ture.

Archie’s mum Louisa Hill said: “Men­tal health is so eas­ily over­looked when some­one is di­ag­nosed with ur­gent phys­i­cal health needs, and it is great that Cheryl, as our lo­cal MP, has raised the is­sue with the Prime Min­is­ter.

“We know first hand how the right psy­cho­log­i­cal sup­port can make all the dif­fer­ence in what is such an ex­treme and heart­break­ing sit­u­a­tion, and hope that fam­i­lies in the same po­si­tion as us in fu­ture get the sup­port too.”

Nic Bun­gay, di­rec­tor of care, cam­paigns and in­for­ma­tion at Mus­cu­lar Dys­tro­phy UK, said: “The Prime Min­is­ter’s back­ing will re­ally help to get the NHS signed up to pro­vide the right psy­cho­log­i­cal sup­port for peo­ple di­ag­nosed and liv­ing with Duchenne mus­cu­lar dys­tro­phy. We couldn’t have won her sup­port with­out the cam­paign­ing of fam­i­lies like Archie’s.

“Hope­fully, an ef­fec­tive test for Duchenne will soon be avail­able and we are work­ing hard to make sure that it can be put into ac­tion as smoothly as pos­si­ble.”

Archie Hill

Cheryl Gil­lan MP

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