Northern Ireland (Ministerial Appointments and Regional Rates) Bill

Debate between David Anderson and Jim Shannon

2nd reading: House of Commons
Monday 24th April 2017 Commons Chamber

[Mr Anderson]

rose—

[Jim Shannon]

I thank my hon. Friend for that intervention. I am happy to give way to the shadow Secretary of State.

[Mr Anderson]

I thank the hon. Gentleman for giving way—I also look on him as a friend. May I make it very clear that I raised that case specifically to make a point about how long it has taken to resolve? I wanted to say to people in Northern Ireland and in this House that we have had 48 years to put the legacy thing right. I fully agree that the other cases that the hon. Gentleman has just spoken about could have been mentioned. It is unreasonable for victims’ families to have to wait for any length of time, but it is particularly unreasonable for them to have to wait for 48 years—that was why I raised that particular case.

[Jim Shannon]

My cousins and our family have been waiting 46 years for such a matter to be addressed. The families of the four UDR men about whom we recently had a debate in the House—Members on these Benches took the time to attend and offer their support—have been waiting some 27 years for justice for those people. We are looking for justice, we want to see it coming, and we want to hear people saying that throughout the Chamber—[Interruption.] I am quite happy to respect everyone else, and if there is a case to be answered, let us answer it, but to be honest, if there is a case involving our side, I want to hear people talking a wee bit more about it. I want to hear about inquiries for Unionist people who have endured some 35 years of terrorism—[Interruption]—and, yes, ethnic cleansing. Down by the border, people were murdered. Why? Because they were Protestants and Unionists. Why did others do that? Because they wanted to get the land. That is an example of what has happened, but we never hear about it from certain elements in this House. We are going to talk about it tonight, because it is a fact that has to be heard.

Drugs: Ultra-rare Diseases

Debate between David Anderson and Jim Shannon

Tuesday 16th June 2015 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

First, I congratulate the hon. Member for Leeds North West (Greg Mulholland) on bringing this matter to Westminster Hall for consideration. Westminster Hall is well filled today because we all have constituents who are suffering and do not have access to the drugs needed to combat these rare diseases. I also congratulate the hon. Gentleman on his hard work on this issue, for which he is well renowned; we have all said that, but it is the truth, and we all want him to know that we know it.

I am glad this debate has occurred, because it is on a subject that affects many people in my constituency. We have heard some stories and we will hear more before this debate is over.

The diseases we are considering may be rare, but collectively they affect the lives of 3 million people across the United Kingdom. That emphasises that everything must be done to create a comprehensive initiative for providing care to those affected by these difficult and challenging diseases.

Rare diseases tend to be life-threatening or chronically debilitating. There are between 6,000 and 8,000 rare diseases. Each one affects less than 0.1% of the UK’s population, but Rare Disease UK calculates that 75% of these illnesses affect children.

We are here today on behalf of our constituents, but we are also focusing very much on young people across the United Kingdom of Great Britain and Northern Ireland who have these problems.

The ultra-rare diseases that have been mentioned include Morquio disease, Duchenne muscular dystrophy and tuberous sclerosis. I would also add Prader-Willi syndrome, which some of my constituents suffer from.

The chance of improving people’s quality of life depends very much on a narrow timescale. It requires quick diagnosis, treatment and drug provision, so that drugs can be accessed when they are proven to be most effective. In other words, as every Member who has spoken has said, time is of the essence—the people who are suffering need help now, not in six or 12 months. It is our duty to make that timeline as transparent and effective as possible within the finite resources we have, and I understand the problems the Minister has. There must be adequate assistance for practitioners, to allow for timely diagnosis and the timely provision of drugs and treatment.

[Mr Anderson]

The hon. Gentleman has been very consistent on this issue, and he is right: as those of us in the all-party group on muscular dystrophy have found, one of the main reasons for delays is that clinicians—particularly GPs—do not see these diseases very often, and when they do, they are sometimes lost as to where to go. Once a disease is diagnosed, the people suffering from it should have no worse access to treatment than people with much more common diseases—surely that is the issue that has to be addressed. Once a disease is identified, we have to get to grips with it, and people have to get the medication and the support they need, so that they can get on and live the best life they can.

[Jim Shannon]

I agree wholeheartedly. I am sure the Minister has heard us all say that time is of the essence and that we should strike right away. That is what we are about.

The health and social care professionals involved in the diagnosis, treatment and care of these patients face difficult tasks. As I was saying, there must be adequate assistance for them, to allow for timely diagnosis and the timely provision of drugs and treatment. There also needs to be sufficient funding UK-wide.

In Adjournment debates and other debates about these issues, I have always referred to Queen’s University in Belfast and to the importance of research and development. Queen’s University is one of the universities that do research, and it works in conjunction with the Health Department. Perhaps the Minister could therefore give us some idea what the Government are doing on research and development to ensure that new drugs are found.