Oral Answers to Questions

Jane Ellison Excerpts

Tuesday 5th January 2016 Commons Chamber

[Mr David Hanson (Delyn) (Lab)]

4. How many people have diseases classified by his Department as rare.

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

A rare disease is a life-threatening or chronically debilitating disease that affects five people or fewer in 10,000. Research shows that one in 17 people will suffer from a rare disease at some point. In the UK, that equates to approximately 3.5 million people.

[Mr Hanson]

Same But Different, which is based in my constituency, is concerned about a number of the challenges faced by people with rare diseases. One key issue that it has raised with me is the level of support available at the time of diagnosis, particularly for parents of children with rare diseases. Will the Minister examine how we can signpost better help and support to those who have been diagnosed?

[Jane Ellison]

I am glad the right hon. Gentleman mentions that point; the House may not be aware that we recently added four new rare diseases to the newborn heel-prick test, which has helped to detect more than 1,400 children with a rare disease. I am disappointed to hear that he feels that some parents had issues with follow-up, and of course we will look into that, but I think he will find that the UK rare diseases strategy, which was published in 2013 and contains 51 commitments from government, covers that. The first report back on that strategy will take place this spring and it is being done by the UK Rare Disease Forum. I am happy to speak to him afterwards about whether the excellent organisation he names is part of that.

[Mrs Cheryl Gillan (Chesham and Amersham) (Con)]

One such rare disease is Duchenne muscular dystrophy. I am sure the Minister is aware that we are awaiting what we hope will be a positive decision from NHS England on a drug called Translarna, which could help boys with the disease. We were due to have that announcement yesterday. Does she have any further and better particulars on that? Will she update us on when we can expect an announcement, which we hope will be a positive one?

[Jane Ellison]

I know that my colleague, the Under-Secretary of State for Life Sciences, is working very hard on that matter, and is hoping to make an announcement soon. I am sure that, at that point, he will be able to update my right hon. Friend.

[Greg Mulholland (Leeds North West) (LD)]

With regard to ultra-rare diseases, I will be joining the family of seven-year-old Sam Brown on 23 January to celebrate the funding of Vimizim. I thank all those involved in that decision, including those in the Department. As well as an update on Translarna, can we also have an update on the possibility of funding another drug that we have been campaigning for, which is Everolimus for tuberous sclerosis?

[Jane Ellison]

I thank the hon. Gentleman for his words, as does my hon. Friend the Under-Secretary of State for Life Sciences. With regard to the matter that he just mentioned, I know that it is something that NHS England is reviewing and it will come forward with a view in due course.

[Michael Fabricant (Lichfield) (Con)]

Will my hon. Friend join me in praising the work of the Institute of Translational Medicine at the University of Birmingham Medical School? It is doing outstanding, world-wide standard work in developing cures and treatments for such rare diseases, and indeed for more common diseases such as cancer.

[Jane Ellison]

I absolutely join my hon. Friend in that and agree with his very well-deserved words of congratulation. I know that the Under-Secretary of State for Life Sciences has visited the institute and is—as everyone is—hugely impressed with it. I also join my hon. Friend the Member for Lichfield (Michael Fabricant) and others in congratulating Charlie Craddock on his CBE in the new year honours list.

[Andrew Gwynne (Denton and Reddish) (Lab)]

Patients living with rare cancers often have fewer treatments available to them. Often, the only option is to use off-label treatments. The cancer drugs fund has helped patients gain access to those treatments, but, despite a Conservative party manifesto commitment to continue investing in it, the fund is now under threat because of central Government cuts. What assurances will the Minister provide to people living with rare cancers that off-label drugs will still be funded? Will she apologise for the uncertainty that those cuts are causing to the thousands of people who are affected by cancer in England?

[Jane Ellison]

I certainly do not recognise the shadow Minister’s characterisation of the cancer drugs fund. Some £1 billion has been committed to it and it is being reviewed. The fund was introduced by the previous Government, and we are very proud of it. It has made a big difference to the lives of more than 80,000 patients. More widely, the recent cancer taskforce published its report, “Achieving world-class cancer outcomes”, and it made many recommendations, which are particularly relevant to rarer cancers and blood cancers, many of which focus on improving access to diagnostic testing.

[Mark Pritchard (The Wrekin) (Con)]

Of the 7% of the population that will suffer at some point in their life from a rare disease, 75% are children. Unfortunately, 30% of those will not reach their fifth birthday. What more can be done for Great Ormond Street hospital and for Birmingham children’s hospital, which do such excellent work?

[Jane Ellison]

My hon. Friend is quite right to highlight the number of people who will be affected by such diseases. There are between 6,000 and 8,000 rare diseases. Among the things that the Government are doing that will make a really big difference to some of the institutions that he mentioned and others, and particularly to sufferers, is the 100,000 genomes project, in which the Government have invested. The creation of a network of genetic medicine centres will underpin that further development of genetic testing services. As a very large proportion of rare diseases are genetically based, we want to make significant progress with that genomic work.

[Christian Matheson (City of Chester) (Lab)]

5. What assessment he has made of the effect of changes to social care budgets on A&E attendances.

--- Later in debate ---

[Matt Warman (Boston and Skegness) (Con)]

T7. In Boston in my constituency, as many as one in four children are classified as obese. Will the Minister reassure me that in the forthcoming obesity strategy, the Government will acknowledge that they are allowing families and, indeed, children the opportunity to take the control of their own lifestyles that will fix this problem, rather than seeking to do it for them?

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

My hon. Friend is right that there is a really important role for families. More than anything, the Government want to make the healthy choice the easy choice for families. However, young children are not in control of the whole of the food environment around them, as I am sure he would acknowledge. The Government’s forthcoming strategy is focused on children. Obesity is a complex issue and, frankly, everyone needs to play their part—the Government, local government, health professionals, industry and families.

[Pat Glass (North West Durham) (Lab)]

T2. The Health Secretary just tried to tell us why we have 8,500 more nurses in the NHS. Let me tell him why it is. It is because we have record recruitment from abroad. Since the Chancellor announced the scrapping of bursaries for trainee nurses and midwives, there has been a worrying reduction in the number of applications for next year’s training, compared with what we would expect to see at this time of year. That can only have a negative impact on the number of trained nurses from this country and on net migration. Was there any discussion between the Department of Health, the Home Office and the Chancellor before this idiocy was introduced?

--- Later in debate ---

[Ben Howlett (Bath) (Con)]

In the previous Parliament, many people who suffer from a rare disease were pleased with the publication of the Government’s rare diseases strategy. What progress is the Minister making on publishing the ultra-rare diseases strategy?

[Jane Ellison]

I am happy to look into that and get back to my hon. Friend. With regard to the 51 recommendations made in the UK rare diseases strategy, he will be pleased to know that the first report on that will be in spring. I will take up the other issue with him after questions.

[Danny Kinahan (South Antrim) (UUP)]

Health is a devolved matter, but devolved Governments may choose not to spend when it comes to expensive rare diseases and diagnoses. What more can Westminster do to help my constituents?

[Jane Ellison]

One example, which I am sure the hon. Gentleman will welcome, is the fact that the four UK Health Departments, along with Cancer Research UK, are jointly funding a network of 18 experimental cancer medicine centres aimed at driving the development and testing of new anti-cancer treatments to deliver benefits for patients, including those with rarer cancers. That is just one example of how we can work together.