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PE1886_C Petitioner submission of 8 September 2021

PE1886/C: Establish a specialist paediatric liver centre in Scotland

The aim of my petition was to draw attention to the hundreds of children forced to England for treatment relating to paediatric liver conditions.

In England there are 3 specialist centres spread evenly to give the population of England easy access to these services.

In Scotland we have tons of children who require this treatment and the 3 centres in England are almost always at capacity, showing that there is a growing need for a new centre within the UK and Scotland. Scotland leads the way on so many fronts, this should be one for our children.

I don’t think that the general care in English hospitals is as good and the constant uprooting of families for this treatment even against our will has such a major mental impact on families of patients.

In the reply I received, the Government have told me that travel and subsistence will be covered but there is no easy way to go about this the system has flaws and makes you jump through hoops. In 2020 we were approx £10k out of pocket, most of that was borrowed from family members, to cover so many expenses especially during the pandemic where public spaces where closed and we had no access to cooking facilities while in England. The system needs looking at and long term hospital families need much better support as the current Young Patients Family Fund (YPFF) which just came in to place does not provide any true form of assistance for travel to foreign nations.