Independent Commission on Adult Social Care
Debate between Baroness Burt of Solihull and Baroness Blake of Leeds(1 day, 21 hours ago)
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Baroness Blake of Leeds (Lab)
The noble Lord, as always, raises a fundamental point. One area that I have most concern about is that of transition. Some young people could be getting very valuable and profound support while they are of school age, but the transition into adulthood is where the gaps occur. We recognise this, and are working on a whole range of issues to make sure that they have opportunities. We need to make sure that every young person has the opportunity to thrive, whatever their background, whatever their health needs, and this Government are committed to do just that.
Baroness Burt of Solihull (LD)
My Lords, we spend about the same amount of money on supporting working- age adults as we do the elderly—about £11 billion per annum. We need to ensure that, within that expenditure, we enable people to have as good—indeed as gloriously ordinary—a life as possible. We obviously need to cover disabled people doing the mundane, day-to-day things, but we also need to give them the things that give them individual pleasure. What is the Minister’s view of the balance that people need for a fulfilling life, which we are surely all entitled to?
Baroness Blake of Leeds (Lab)
In many ways, despite all the challenges, we are entering an interesting and exciting phase in terms of new technologies, digital awareness and understanding how we can better engineer communication, for example. The noble Baroness is of course absolutely right that everyone deserves to have access to those opportunities, but we need to make sure that everyone is known, their needs are known, and the support is there so that they can thrive.
Duchenne Muscular Dystrophy: Givinostat
Debate between Baroness Burt of Solihull and Baroness Blake of Leeds
Baroness Blake of Leeds (Lab)
I am not sure that I can add a great deal more, other than to refer the noble Baroness to the 10-year plan, where innovation is absolutely at the core and the centre. We are where we are, and her point is about how we move from here to where we need to be. We need to make sure that there is a real focus on moving all that expertise into actual practice to bring benefit to as many patients as possible.
Baroness Burt of Solihull (LD)
My Lords, currently only 70 of the 500 children with Duchenne are accessing the trial of givinostat. We are hoping for a decision on 18 December from NICE, but my worry is about how long the rollout will take for sufferers and their parents. They want to know how long it will take for those who are not included in the fortunate 70 currently receiving givinostat, and for others in categories that may also be helped.
Baroness Blake of Leeds (Lab)
I recognise the noble Baroness’s concern and in-depth knowledge about this situation. I need to repeat at this point that it would be wrong of me to speculate on the outcome. I hope that the decision will be earlier than the date she mentioned. When the guidance is published, we will be in a much better position to assess next steps.