My Lords, I declare an interest as chair of the Specialised Healthcare Alliance, a coalition of 79 patient-related organisations receiving financial support from 11 corporate members, which campaigns on behalf of people with rare and complex conditions.

The Advisory Group on National Specialised Services, or AGNSS, was established in 2010. Its...

My Lords, I declare an interest as chair of the Specialised Healthcare Alliance, a coalition of 79 patient-related organisations receiving financial support from 11 corporate members, which campaigns on behalf of people with rare and complex conditions.

The Advisory Group on National Specialised Services, or AGNSS, was established in 2010. Its...

My Lords, I am sure that we are all grateful to the noble Baroness, Lady Jolly, for introducing this debate and setting out the issues so clearly. There is deep concern among the support groups that speak for patients with rare diseases that the loss of this advisory group, newly...

My Lords, I am sure that we are all grateful to the noble Baroness, Lady Jolly, for introducing this debate and setting out the issues so clearly. There is deep concern among the support groups that speak for patients with rare diseases that the loss of this advisory group, newly...

My Lords, the noble Lord, Lord Patel, is indisposed and we wish him well.

I thank my noble friend Lady Jolly for initiating this debate and for giving a detailed introduction to the problems mentioned in its title. My concern is specifically with the treatment of Gaucher’s disease, the genetic disease...

My Lords, the noble Lord, Lord Patel, is indisposed and we wish him well.

I thank my noble friend Lady Jolly for initiating this debate and for giving a detailed introduction to the problems mentioned in its title. My concern is specifically with the treatment of Gaucher’s disease, the genetic disease...

My Lords, until 2008, I was deputy chair of the National Specialist Commissioning Advisory Group, which was a predecessor organisation to AGNSS.

There are some very rare conditions affecting mental health. Services meeting the criteria defined by the noble Baroness have been commissioned, such as:

the children’s gender identity development service, for...

My Lords, until 2008, I was deputy chair of the National Specialist Commissioning Advisory Group, which was a predecessor organisation to AGNSS.

There are some very rare conditions affecting mental health. Services meeting the criteria defined by the noble Baroness have been commissioned, such as:

the children’s gender identity development service, for...

My Lords, I thank the noble Baroness, Lady Jolly, for this timely debate on AGNSS. There is no doubt in my mind that there are many really concerned and frustrated people who are involved in highly specialised conditions, be they patients, relatives or doctors treating them. With so much insecurity...

My Lords, I thank the noble Baroness, Lady Jolly, for this timely debate on AGNSS. There is no doubt in my mind that there are many really concerned and frustrated people who are involved in highly specialised conditions, be they patients, relatives or doctors treating them. With so much insecurity...

My Lords, I am grateful to my noble friend Lady Jolly for this debate. I do not have to declare an interest because, although I have a rare disease, I do not have an ultra-orphan disease. There will be a lot of repetition in what we are saying but perhaps...

My Lords, I am grateful to my noble friend Lady Jolly for this debate. I do not have to declare an interest because, although I have a rare disease, I do not have an ultra-orphan disease. There will be a lot of repetition in what we are saying but perhaps...

My Lords, I too am deeply grateful to the noble Baroness, Lady Jolly, for initiating this important debate. I have been a long-time supporter of the Rare Disease UK consortium, now chaired by the man who recently was the director of the Genetic Interest Group. A recent editorial in the...

My Lords, I too am deeply grateful to the noble Baroness, Lady Jolly, for initiating this important debate. I have been a long-time supporter of the Rare Disease UK consortium, now chaired by the man who recently was the director of the Genetic Interest Group. A recent editorial in the...

My Lords, with your Lordships’ consent, I will speak briefly in the gap on the issue of the mental health of families and children and on clinical standards for children and young people in care. My noble friend Lady Hollins raised important points in this area. I will give one...

My Lords, with your Lordships’ consent, I will speak briefly in the gap on the issue of the mental health of families and children and on clinical standards for children and young people in care. My noble friend Lady Hollins raised important points in this area. I will give one...

My Lords, I congratulate the noble Baroness, Lady Jolly, on giving us this welcome opportunity to discuss national specialised services. The points that she has made are significant both in terms of specialist services and also in terms of some of the vulnerabilities in the new architecture that we see...

My Lords, I congratulate the noble Baroness, Lady Jolly, on giving us this welcome opportunity to discuss national specialised services. The points that she has made are significant both in terms of specialist services and also in terms of some of the vulnerabilities in the new architecture that we see...

My Lords, perhaps I may begin by congratulating my noble friend Lady Jolly on securing this short debate on the future of the Advisory Group for National Specialised Services. This is undoubtedly an important area for discussion, not only for the members of the advisory group who have worked hard...

My Lords, perhaps I may begin by congratulating my noble friend Lady Jolly on securing this short debate on the future of the Advisory Group for National Specialised Services. This is undoubtedly an important area for discussion, not only for the members of the advisory group who have worked hard...

Lords question for short debate on what is their assessment of the future of the work of the Advisory Group for National Specialised Services.

Lords question for short debate on what is their assessment of the future of the work of the Advisory Group for National Specialised Services.

These amendments—the last group that we shall consider tonight—contain important issues, including that of local community involvement, which was raised by the hon. Member for Leicester West (Liz Kendall). Like other Members, I have an interest in the subject, and have done so throughout my time in politics. I happen...

These amendments—the last group that we shall consider tonight—contain important issues, including that of local community involvement, which was raised by the hon. Member for Leicester West (Liz Kendall). Like other Members, I have an interest in the subject, and have done so throughout my time in politics. I happen...

I absolutely concur with my right hon. Friend. For the record in this House, I pay tribute to our colleagues in the Lords for their achievements and their efforts in securing some of the protections for the NHS that we are debating today. There was absolutely no mention of education...

I absolutely concur with my right hon. Friend. For the record in this House, I pay tribute to our colleagues in the Lords for their achievements and their efforts in securing some of the protections for the NHS that we are debating today. There was absolutely no mention of education...