Part of the debate – in the Senedd at 3:24 pm on 24 September 2019.
Diolch, Llywydd. Can I first call for a statement on the Cystic Fibrosis Trust? In response to Bethan Sayed, you referred to a statement by the Minister in August, but the Scottish Government announced that people with cystic fibrosis there could access Orkambi and Symkevi as part of a five-year agreement with Vertex on 12 September. So, things have moved on and it's in that context that Cystic Fibrosis Trust have stated that it seems there were preliminary discussions between Vertex and the All Wales Therapeutics and Toxicology Centre looking at the possibility of submissions being made some weeks and months ago, but the data submissions to the All Wales Medicines Strategy Group haven't taken place, as far as they're aware. And, with the news from Scotland, they're saying that it's very disappointing that these discussions haven't got to this stage with Welsh authorities and they're urging Vertex to ensure that they follow the necessary procedures to make this happen. But they're also saying it would be really useful if we can ensure the Minister here can continue to update the Assembly on progress and look at what his department can do to ensure that this stays on the agenda and Welsh people with cystic fibrosis aren't spending too long without access to treatments their Scottish counterparts do have access to. So, the diary has moved on, and it's in that context I feel, across parties, we would welcome that statement.
Secondly, and finally, I call for a statement on the modern slavery helpline. On 7 May, Jane Hutt, Deputy Minister and Chief Whip, made a statement on the modern slavery helpline, hosted by Unseen. As she said, Unseen
'work with a range of partners including the UK and devolved Governments...working to build a better understanding of how modern slavery is affecting our communities and our people so that effective and timely action can be taken to address the problem.'
And she said:
'Our Wales Anti-Slavery Leadership Group works closely with Unseen to help promote the Helpline, which aims to increase levels of reporting and subsequently leads to more victims being identified, rescued, and where possible to the prosecution of offenders.'
However, serious concerns have been raised with me about the organisation Unseen and the helpline, where, despite having received £2 million in two years, it seems that, without urgent funding, the helpline is now under threat of being closed. In fact, their website—I've checked this morning—says:
'SAVE THE UK MODERN SLAVERY HELPLINE..Without urgent funding it will close on 30th November'.
And also, yesterday, in the North Wales Chronicle, we read that the Human Trafficking Foundation has welcomed an increase in the identification of potential victims, including 70 potential victims recorded by North Wales Police in the 12 months to June—that's significantly up on the previous 12 months. But she has cautioned—or they have cautioned—that the proportion of people entering the national referral mechanism who are then recognised as having been trafficked has remained stagnant. Only about 7 per cent of cases investigated go to the Crown Prosecution Service, only about 1 per cent receive compensation, and, she says, perhaps most shockingly of all, the Government, and presumably both Governments in the context of the Minister's previous statement, have no idea what happens to these thousands of victims when they exit the national referral mechanism. This is a terrifying oversight.
Again, I call for an urgent statement in that context, where the helpline the Welsh Government is contributing to and dependent upon might be about to close.