Genetic Haemochromatosis

Debate between Liz McInnes and Bob Stewart

Wednesday 3rd July 2019 Westminster Hall

[Liz McInnes (Heywood and Middleton) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Sharma. I am grateful to the hon. Member for Rugby (Mark Pawsey), the chair of the all-party parliamentary group for genetic haemochromatosis, for having brought this debate before the House. It is an important subject; I asked for a debate on it earlier this year following the release of the University of Exeter’s research, which showed that this condition was 20 times more common than was previously thought, so I am pleased that the hon. Gentleman has secured this debate. I am also grateful to the charity Haemochromatosis UK, which is based in his constituency and whose website contains a wealth of useful information.

The hon. Gentleman has given a comprehensive opening speech, showing his understanding and knowledge of this condition, so I do not need to repeat it. Instead, I will talk about the research that was published this year and its implications. As we have heard, haemochromatosis is thought to be the UK’s most common genetic disorder and is inherited in a recessive manner, linked to a faulty gene passed from both parents to their child. It was previously believed to seriously affect about one in 100 carriers, but the new research has suggested that the true level could be closer to one in 10 among women, and one in five for men.

Researchers at the University of Exeter analysed data from 2,890 people from the UK Biobank who had the specific mutation to which the hon. Gentleman referred. The research was conducted on subjects aged between 40 and 70, so the point he made about that research being limited in its age range was a good one. In the light of those findings, the UK National Screening Committee has said that it will look at the evidence on screening for haemochromatosis in 2019-20, as part of its routine three-yearly review. I would be interested to hear the Minister’s comments about that.

The lead researcher, Professor David Melzer of the University of Exeter, has said that haemochromatosis is easy to treat if diagnosed early enough, which I think is the key point of this debate. However, the hon. Member for Rugby has observed that haemochromatosis can be difficult to spot, which is also a pertinent point. A lot of the symptoms can be very non-specific, and it is not a condition that is uppermost in the minds of general practitioners, which is why we are now considering routine screening. As we have heard, the treatment is relatively simple and involves regular venesection, or bloodletting. As the body makes more blood to replace that which is taken, it uses up the excess stored iron. That treatment, if started early enough, can avoid the complications of haemochromatosis that we have already referred to—liver failure, diabetes, chronic pain and severe arthritis—developing later in life.

I will illustrate the effect of having a diagnosis of haemochromatosis later in life by telling the story of my constituent, Paul Dicken. Paul has given me permission to use him as a case history, and I think his story will strike a chord with many haemochromatosis sufferers. He was diagnosed only this year after years of suffering from symptoms including liver, joint and stomach problems, for which he has been taking multiple painkillers over the years. Since his diagnosis, he has been having venesection, but he tells me that he now suffers from lethargy due to the frequency of venesection, no energy, muscle loss and joint pain. He has said that his depression is hitting a new low and, regarding his eventual diagnosis, has said that

“I was being asked for a long time if I had a drink problem because of my liver problems…but I don’t drink and the haemochromatosis was only discovered because the doctor was worried about my white blood cells being high.”

Paul’s case is a clear example of how raising awareness of the disease among GPs and medical professionals might have helped him get an earlier diagnosis and spared him some of the painful symptoms and possibly inappropriate treatment he had. I am grateful to him for allowing me to tell his story. Testing for iron overload is simple and GPs should be aware of the transferrin saturation test, where a result of greater than 50% indicates a risk of iron accumulation. If such a result is found, the patient should be referred to secondary care for further tests.

[Bob Stewart]

From what I have heard today, which is the entire encyclopaedia of my knowledge, it seems to me that we could cover the issue pretty well if every blood test included a check, because most people have blood tests at some stage—that happens fairly often these days.

[Liz McInnes]

I thank the hon. Gentleman for making that point, but I issue a caveat about blanket screening: it has to be proven to be clinically effective and it must not throw up false positives and false negatives. The tests are fairly specific for haemochromatosis, but they will have to go through an evaluation process, as I am sure the Minister will inform us when she makes her closing remarks.

At this stage, I want to mention the biomedical scientists and clinical scientists working in our NHS pathology labs. Those often unsung heroes of the NHS are the people who will be performing the tests. Indeed, that was my profession before I was elected as the MP for Heywood and Middleton.

In closing, I want to say that it is important to discuss with any patient diagnosed with genetic haemochromatosis the desirability of genetic testing for other members of the family, as there is at least a one in four chance that a sibling will also have haemochromatosis. Family checks frequently lead to the detection of haemochromatosis before organ damage has occurred. That is important.

It is important we are having this debate. Early diagnosis will help save lives, help cut costs for the NHS and reduce unnecessary suffering for so many individuals, such as my constituent Paul, and families around the UK.

Sudan

Debate between Liz McInnes and Bob Stewart

Thursday 20th June 2019 Westminster Hall

[Liz McInnes (Heywood and Middleton) (Lab)]

It is a pleasure to serve under your chairwomanship, Dame Cheryl.

I thank everybody who has made a contribution to the debate, particularly my hon. Friend the Member for Stroud (Dr Drew). He spoke about the delegation to Sudan that he and I took part in last year, and he is right to say that we had an idea of the problems that were brewing at the time. President Bashir had been selected as the candidate for the next elections; there was a feeling that, while there were issues, he had brought stability to the country. There was a strong feeling that he was the candidate—but with serious reservations. We had many meetings with politicians in Sudan, and that thread ran through all our discussions. But as my hon. Friend said in his opening remarks, none of us quite anticipated the scale of the current crisis. I think of the relative calm we encountered in September last year, and the protests and killings that have taken place since in Khartoum and elsewhere in Sudan. Everybody has talked about the difficulties of accessing information from Sudan. The news we have had does not cover the whole story, and I will go on to talk about press freedom.

I thank all hon. Members who have spoken—the chair of the APPG, the hon. Member for North West Norfolk (Sir Henry Bellingham), who is a fount of knowledge on Sudan and South Sudan, my hon. Friend the Member for Scunthorpe (Nic Dakin) and the hon. Member for Beckenham (Bob Stewart). It is a pleasure to follow the hon. Member for North East Fife (Stephen Gethins), who made some pertinent points. He put one question to the Minister that I would also like to ask, about calling a halt to deportations to Sudan in the midst of the current crisis. I would be interested to hear from the Minister whether she has had any discussions with the Home Office on that issue. It is vital that we do not send people back to a conflict zone.

Many MPs with Sudanese diasporas in their constituencies have approached me in the past few weeks, bringing messages from their constituents and asking me why we are not talking more about Sudan. I am therefore grateful that my hon. Friend the Member for Stroud secured this important debate, and there was also an urgent question last week. However, although it is important that we have these debates, talking on its own is not enough. What we need is action, and with that in mind I have several asks of the Minister, which I hope she will be able to address.

The first thing I want to ask the Minister is what we can do to put pressure on the internet providers in Sudan. I have already mentioned the difficulties we have in getting information out of Sudan, and one problem is that the internet providers have shut down the internet, or have been shut down by the Sudanese authorities. The major providers are the South African company MTN and a Kuwaiti company. It is unlikely that the UK can do much about them, but, nevertheless, I would be interested to hear what action the Foreign Office is taking to try at least to restore internet access to the people of Sudan.

There is also the important issue of press freedom—I know it is an issue dear to the Foreign Secretary’s heart, because he is holding a conference on it next month. Sudanese journalists have been targeted since the public protests began. Their media accreditations have been revoked, and many journalists have been detained. The International Federation of Journalists has joined its affiliate, the Sudanese Journalists Union, in condemning any attempts to intimidate the press. The IFJ is urging the authorities to end the clampdown and respect journalists’ rights to report in a safe working environment.

In May, the Sudanese authorities closed al-Jazeera’s offices in Khartoum and withdrew the work permits of all its staff. Again, the IFJ and the Federation of African Journalists have condemned the move as an attack on freedom of information and called for an immediate end to the clampdown on the media. Given the Foreign Secretary’s major and important work on press freedom, I would be interested to hear the Minister’s comments on how the UK intends to support press freedom in Sudan, which is vital.

It has been noted already that the Ethiopian Prime Minister has tried to mediate; sadly, one result was that some of the opposition politicians he spoke to were then imprisoned. It is important to note that, while the Ethiopian position is that Sudan should move to any civilian Government, many people, including many members of the Sudanese diaspora, would prefer groups that are already in the Forces of Freedom and Change and not Islamist or unheard-of groups. I would be interested to hear the Minister’s thoughts on that and on whether it should be UK foreign policy to support groups from the Forces of Freedom and Change.

The African Union has quite rightly suspended Sudan’s membership until a civilian-led transitional authority has been established. We need to place further pressure on the Transitional Military Council to continue the political transition. My hon. Friend the Member for Stroud is right to raise the UK’s important role as part of the troika, and it is vital that we use our influence there.

We need an internationally led independent investigation into the recent events. We need an investigation into the killings, the rapes and the injuries inflicted on innocent, peaceful protestors. Britain must recognise its historical duty to Sudan and play a key part in enabling that.

I want to make a few remarks about UK aid. My hon. Friend also raised the issue of EU moneys finding their way to the RSF, but I will concentrate on DFID moneys. We will provide £65 million of aid in 2018-19 and £50 million in 2019-20, the majority of which will go on humanitarian assistance and development work. However, given the current crisis, has the Minister given any thought to increasing or redirecting UK aid, and will she make aid conditional on achieving a peaceful transition to a civilian Government?

My hon. Friend and the hon. Member for North East Fife both talked about the bravery of the UK ambassador, and I support those remarks. He provides people with support, and it is vital that we keep up that vital diplomatic role in Sudan.

[Bob Stewart]

On bravery, my hon. Friend the Member for North West Norfolk (Sir Henry Bellingham) raised the issue of the number of casualties among non-governmental organisation workers. My wife was a delegate in South Sudan and was actually taken hostage for three weeks, so I am speaking out of self-interest here. The people who operate for non-governmental organisations in Sudan and South Sudan put their lives at risk all the time; they are incredibly brave. We should mark that point. I am in awe of some of those I have met.

[Liz McInnes]

The hon. Gentleman is absolutely right to comment on the bravery of people who work for our NGOs, including his wife, whom I have had the pleasure of meeting. She is an indomitable woman. We had a debate here a while ago on South Sudan, and my hon. Friend the Member for Scunthorpe talked about South Sudan being the most dangerous place in the world for aid workers—in our discussion on Sudan, we must not forget the work that goes on in South Sudan as well. I thank the hon. Gentleman for that timely intervention.

I agree with the chair of the all-party parliamentary group, the hon. Member for North West Norfolk, that we need more action and a strong resolution from the UN. We are grateful to the UN for halting the drawdown of UNAMID. When my hon. Friend the Member for Stroud and I were in Sudan, we visited Darfur and spoke to people involved in UNAMID, the police and the military, who told us their concerns about the drawdown, but this crisis has necessitated the UN’s keeping UNAMID as it is. Rather than a policy of no further drawdown, does the Minister think we should engage in talks about increasing UNAMID’s presence? I am interested to hear her thoughts on that.

The two final points I want to make are on the involvement of the ICC and the investigation of war crimes, which I think have been mentioned by everybody who has spoken. We absolutely have to hold the TMC to account for what has happened in recent months. There are also the outstanding ICC charges against President Bashir for war crimes and human rights abuses. All these issues need to be investigated, and we in the UK should put pressure on Sudan to ensure that those investigations take place.

--- Later in debate ---

[Liz McInnes]

I entirely agree. This situation has been allowed to sit in limbo for far too long. It is a matter of international law that President Bashir should face up to the charges against him.

[Bob Stewart]

As soon as possible.

[Liz McInnes]

Yes.

Finally, I want to press the Minister on UK attempts to strike trade deals with Sudan, which I raised with her last week. I would also be grateful if she commented on our approach to trade with Sudan. Given the political crisis, I am really interested to hear her view on potential trading relationships and on whether we will see a change of view from the current Foreign Secretary, given that his predecessor was very keen to hold UK-Sudan trade and investment forum talks in December 2017.