‘When Rosa was born, I knew I had to start fight­ing for the par­ents of other pre­ma­ture babies’

MSP STARTS CAM­PAIGN FOR MOTH­ERS AND FATHERS CRIP­PLED BY COSTS OF NEONA­TAL CARE FOR DES­PER­ATELY ILL BABIES.

Sunday Herald - - PEOPLE - BY ANDREW WHI­TAKER

ANEW cam­paign is un­der way to in­tro­duce a “fam­ily fund” to help low-in­come par­ents of pre­ma­ture babies who face crip­pling costs while their child is in hos­pi­tal. MSP Mark Griffin, whose baby daugh­ter Rosa nearly died af­ter she was born 12 weeks pre­ma­turely, wants to ease the fi­nan­cial bur­den on thou­sands of Scot­tish fam­i­lies fac­ing sim­i­lar trau­mas.

Due to time lost at work as well as other costs such as travel, ac­com­mo­da­tion, food, and care for other chil­dren, par­ents spend £282 ev­ery week their in­fant is in neona­tal care or £2,225 on av­er­age over a child’s to­tal stay in hos­pi­tal.

Griffin, a Labour MSP, said: “I’m paid well, but even we felt the squeeze so I can’t imag­ine how peo­ple on low in­comes deal with these costs that see their bank bal­ances col­lapse. It’s such a big out­lay.

“There were babies born by C-sec­tion so the mums were not able to drive and had to rely on taxis and pub­lic trans­port.”

More than 2,000 babies born at less than 37 weeks re­ceive neona­tal care in Scot­land ev­ery year.

Griffin and wife Stephanie were told in April that their un­born daugh­ter Rosa would al­most cer­tainly die af­ter an in­fec­tion that nearly killed the baby’s mother.

De­spite weigh­ing just over 1lb when she was born, Rosa is now back home with her par­ents af­ter 22 weeks in in­ten­sive neona­tal care, four blood trans­fu­sions and an op­er­a­tion.

Griffin spoke about how, when their daugh­ter was be­ing cared for, he and his wife trav­elled from their fam­ily home in Cum­ber­nauld to hos­pi­tal in Wishaw ev­ery day.

How­ever, he said they en­coun­tered other par­ents who had to come from much fur­ther afield and could not af­ford daily vis­its.

On av­er­age, par­ents of pre­ma­ture babies spend £53 ev­ery week on food and drink costs, be­cause they have to buy from ex­pen­sive fran­chises and hos­pi­tal can­teens.

Par­ents also had to travel an av­er­age of 27 miles to visit their pre­ma­ture baby with av­er­age weekly costs of £100, re­search has found.

Griffin said the ex­pense meant some moth­ers were un­able to get to hos­pi­tal ev­ery day to breast­feed their babies. He claimed that can make the dif­fer­ence be­tween life and death for pre­ma­ture babies.

Speak­ing about the trauma fac­ing such fam­i­lies, Griffin said: “We went from Cum­ber­nauld to Wishaw, but there were other peo­ple com­ing from Pais­ley, Dun­fermline, Air­drie and Ayr­shire.

“There were peo­ple who were strug­gling fi­nan­cially so there were some who were there one day and not the next. Mums who can’t be in hos­pi­tal feel so bad about that.

“One of the main things for the health of a pre­ma­ture baby is en­sur­ing that the child gets ac­cess to breast milk to deal with the risk of in­fec­tion. It’s ridicu­lous if a mum is pre­vented from do­ing that. That’s the key point in all of this and it could make a dif­fer­ence to a life.”

Griffin is writ­ing to Health Sec­re­tary Shona Ro­bi­son and So­cial Se­cu­rity Min­is­ter Jeane Freeman ask­ing for a fund tar­geted at low-in­come par­ents of pre­ma­turely born babies.

The Cen­tral Scot­land MSP said min­is­ters could use ex­ist­ing pow­ers or newly de­volved re­spon­si­bil­i­ties over wel­fare ben­e­fits to de­liver it swiftly.

Griffin said that if min­is­ters failed to act he would bring a Pri­vate Mem­bers’ Bill to Holy­rood. Griffin has also pro­posed leg­is­la­tion for an optout sys­tem for or­gan do­na­tion.

He said: “The Scot­tish Gov­ern­ment needs to step in and set up a fam­ily fund that is tar­geted at low-in­come par­ents. It’s not a big cost we’re talk­ing about. It’s a pay­ment for a short while, it’s not some­thing that’s per­ma­nent. If the Gov­ern­ment came up with a rea­son­able fig­ure or even if they said there would at least be a con­tri­bu­tion, it would be a step for­ward. I hope they’ll be able to do it with­out leg­is­la­tion, but if it comes to it I’ll put for­ward a Pri­vate Mem­bers’ Bill.” Griffin claimed there was an anom­aly as he said fi­nan­cial sup­port is avail­able for par­ents of pre­ma­ture babies once a child is sent home but not while they are in hos­pi­tal.

He said: “It’s strange that at home there is sup­port avail­able, but that there is noth­ing to help those in hos­pi­tal. The Gov­ern­ment should ad­dress this gap.”

Last night, Griffin’s call was backed by Bliss, the lead­ing char­ity for sick and pre­ma­ture babies, which found that 72 per cent of par­ents saw their fam­ily fi­nances wors­ened as a re­sult of their baby’s stay in neona­tal care.

Caro­line Lee-Davey, chief ex­ec­u­tive of Bliss Scot­land, said “Across hos­pi­tals in Scot­land, a lack of fa­cil­i­ties, ac­com­mo­da­tion and fi­nan­cial sup­port is keep­ing par­ents from be­ing with their babies when they need them most.

“The Scot­tish Gov­ern­ment must take ur­gent ac­tion to de­liver on their com­mit­ments to these fam­i­lies by pro­vid­ing sup­port through a fam­ily fa­cil­i­ties fund.”

Ro­bi­son said she was “de­lighted that Mr Griffin and his wife have now been able to take their bon­nie wee daugh­ter home”, adding that the Scot­tish Gov­ern­ment “wants to en­sure that ev­ery woman and baby in Scot­land gets the best ma­ter­nity and neona­tal care”.

She said the Gov­ern­ment would con­sider Griffin’s pro­pos­als.

Labour MSP Mark Griffin, whose daugh­ter Rosa, left, was born 12 weeks pre­ma­turely, says his fam­ily felt the squeeze on their fi­nances with all the ex­tra costs of deal­ing with a pre­ma­ture baby in hos­pi­tal

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