Duchenne Muscular Dystrophy: Givinostat

Debate between Baroness Blake of Leeds and Baroness Burt of Solihull

Tuesday 22nd July 2025 Lords Chamber

[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.

Worker Protection (Amendment of Equality Act 2010) Bill

Debate between Baroness Blake of Leeds and Baroness Burt of Solihull

3rd reading
Tuesday 12th September 2023 Lords Chamber

[Baroness Burt of Solihull (LD)]

My Lords, taking this Bill through your Lordships’ House has been somewhat of a challenge, but I am delighted to see the finishing post coming up—for this House anyway—until it wends its way back to the Commons and the final hurdle under the sure guidance of the honourable Lady, the Member for Bath. I am grateful to everyone who has worked so hard to bring the Bill to this stage, which has necessitated a great deal of pragmatism and compromise on all sides, not least by the Minister.

The Bill will not return to the Commons as it was when it first arrived in your Lordships’ House but, in essence, it will still protect workers from sexual harassment and it will impose a duty on employers to take reasonable steps to ensure that their employees are protected. Sexual harassment and assault in the workplace, particularly on women at all levels—even, we learn today, on female surgeons—are rife. The Bill will go some way towards rectifying this. We need a change of workplace culture, and this Bill will make a good start.

I thank all Members who have participated in the Bill, including the Minister, the officers of the Government Equalities Office and my legislative adviser, Mohamed-Ali Souidi. The EHRC has also given us excellent advice and will be charged with enforcing the new duty and helping and advising employers. On behalf of the EHRC, I ask the Minister to ensure that the necessary resources are made available to enable it to do this work. An Act is just a piece of paper until and unless it is properly enforced—in this case, that will be no small job. I look forward with great relief to now waving the Bill goodbye for its final stages in the other place.

[Baroness Blake of Leeds (Lab)]

My Lords, I express my sincere thanks to the noble Baroness, Lady Burt, for all the work she has put in, and thank the Minister for her support in the passage of this Bill through the House. The Bill represents an excellent step in the right direction. Clearly, we still have much to do. I also echo the sentiments and hope that the Government will move forward on this and will provide the necessary resources to make sure that all the provisions can be fully implemented.