Motor Neurone Disease Research: Government Funding

Jim Shannon Excerpts

Tuesday 13th December 2022 Westminster Hall

[Karl Turner (Kingston upon Hull East) (Lab)]

I beg to move,

That this House has considered Government funding for research into motor neurone disease.

It is an absolute pleasure to serve under your chairship, Mr Mundell. MND is a devastating, debilitating and untimely life-limiting disease. We saw that just two weeks ago with the tragic loss of Doddie Weir, to which you have referred. Doddie was a giant of a man, both on and off the field, but the MND Association estimates that in the UK six people a day die of MND. A third of them die within 12 months of diagnosis, but it is now more than a year since the Government pledged—in response to the tireless efforts of campaigners and following meetings between me and the then Business Secretary, the right hon. Member for Spelthorne (Kwasi Kwarteng)—to invest £50 million. We met the Secretary of State that day with campaigners, and he gave an assurance to us all that immediate action, meaning immediate money, would be forthcoming. It was not.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing forward this important issue. I have a close working relationship with MND campaigners back home, and ahead of the debate they got in touch to point out the lack of adequate care and provision in Northern Ireland. The Department of Health back home needs help to improve the standard for accessing clinical trials, and the same applies for people across the UK. Does the hon. Gentleman agree that it is imperative that people in all parts of this great United Kingdom of Great Britain and Northern Ireland are able to gain from research and be involved in clinical trials? We all stand to gain from that.

[Karl Turner]

I agree with the hon. Gentleman, who is an incredibly impressive campaigner on the issue. I pay tribute to him. He is knowledgeable on the subject, and he raises it both publicly in debate and privately with Ministers when given the opportunity. I commend him for that.

I very much welcome the Secretary of State for Health and Social Care commenting at the weekend that the money will be fast-tracked into the hands of researchers, but I am sorry to say that it feels as though the Government have dragged their feet. They have been dragged kicking and screaming to this point by the impressive dedication of MND campaigners—not least Rob Burrow, who is a rugby league legend—and it is disappointing that we have had to wait 12 months for anything. This debate was secured, then there was talk in the media that there would be funding available, but campaigners are entitled to be a little concerned and a little nervous about where and when that money will be forthcoming.

I pay tribute to the campaigners. I have briefly mentioned Rob Burrow; for all his brilliance on the pitch, the whole rugby league community has been blown away by his determination to raise awareness of MND. It is his tenacity that has brought us to where we are today. I have to be honest that I knew very little about MND. I am a rugby league fanatic; I support both of the rugby league teams in Hull. I am bound to say, being the Member for east Hull, that I support the red and whites a bit more than the black and whites on occasion. Rob is the person who brought this to my attention. Special mention should also be given to Rob’s former teammate and best pal, Kevin Sinfield, who has completed seven ultra-marathons in seven days to raise about £1.5 million for MND charities. That is an incredible effort from an incredible campaigner and man.

This debate was secured before the Secretary of State announced the money at the weekend. I want to mention that I have spoken with the MND Association at length, and my office has spoken with it in preparation for this debate. It has one single ask. It desperately needs a meeting with the Secretary of State for Health and Social Care and the Secretary of State for BEIS, so that it can get a timeline and some understanding of when the money will be made physically available. It is no good promising money and then not delivering it. The promise was made more than 12 months ago—nothing has been forthcoming.

I am quite annoyed at the fact that the debate was secured, and all of a sudden there is discussion in the media that the money is coming. People are asking me whether it means 50 million quid last year and 50 million again this year. The reality is that it is 50 million quid, which is much needed—the association and campaigners are grateful for it—but they need to know when and how the money is going to be made available.

I am going to rest there; I do not think I have anything further to add. It is a simple ask: will the Minister agree to speak to the Secretaries of State concerned and put the meeting together as quickly as possible, so that we can move forward?

Moles and Skin Tags: Testing for Cancer

Jim Shannon Excerpts

Monday 12th December 2022 Commons Chamber

[Bob Seely]

I thank the hon. Gentleman for his intervention. I am going to follow up on several of those points, but I am delighted to see that he is one of the many people who have survived a malignant melanoma.

If Zoe’s mole had been diagnosed early—especially at stage 1 or 2, and possibly even at stage 3—she may have well survived. Just before I come to some of those suggestions, I must point out that these melanomas are a specific concern on the Isle of Wight, because we have one of the highest rates of skin cancer.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Gentleman for his assiduous attention to his constituents and to the family who have been bereaved. By his words today, we all recognise that he is deeply concerned and compassionate, and we thank him for that.

May I gently tell the hon. Gentleman—perhaps the Minister might take note of this as well—that in Northern Ireland a new mole mapping and melanoma service has been introduced in my local South Eastern Health and Social Care Trust? It is a nurse-led, two-year pilot project that offers an advanced mole mapping technique for specific patients identified by the clinical team as being at higher risk of developing melanoma skin cancer. I suggest that that should be a standard for everyone not just in my trust area but everywhere else, so that we do not have a postcode lottery. Would the hon. Gentleman be interested in that pilot scheme? If so, maybe the Minister will take note.

[Bob Seely]

I thank the hon. Gentleman for yet another excellent intervention, and I completely agree. In fact, I will come to those points now.

The Isle of Wight is a specific hotspot for skin cancer. I think it has the worst skin cancer rates in the United Kingdom, primarily as a result of certain factors. First, we still have a very white population, and the paler your skin, the more likely you are to develop melanomas. Secondly, we have an ageing population, and melanomas are cumulative. Thirdly, we have a very outdoors lifestyle on the Island, with golf, sailing, a lot of community activity and a lot of gardening. For the Isle of Wight’s retirement community especially, to be out in the sun aged 60 or 70 doing activities such as sailing, which is very harsh on the skin because of the interaction of sun and water, encourages melanomas. Fortunately, we have one of the best dermatology centres in Britain at Newport’s Lighthouse clinic, and I thank its doctors and staff for doing an excellent job. I have been there myself in the past couple of years, and I know what a great job they do.

In the NHS long-term plan, the Government committed that the proportion of cancers diagnosed at stages 1 or 2 will rise from about half to three quarters of all cancer patients, meaning that some 55,000 more people a year should survive cancer for at least five years after diagnosis.

Pilot schemes in various parts of the country are trying to improve the diagnosis of skin cancers and melanomas. One option to improve this still further is what, on the Island, we call Zoe’s law, but it would effectively be a change of practice within the NHS. Eileen, Zoe’s mum, and her family are doing it in memory of Zoe, and it would require all moles and skin tags removed from the body to be tested for melanoma. I am not expecting an off-the-cuff answer from the Minister on this point, but I would very much like her to write to me so that I can pass on her comments to Eileen and the rest of Zoe’s family. If that cannot be done now, I would like to know why not.

I would also like to know what more could be done in future, because thousands of people are needlessly dying every year. Skin cancers kill more slowly than many other cancers and are certainly more treatable than cancers such as lung cancer and pancreatic cancer. Eileen said Zoe thought of everyone before herself. When Zoe was dying, she said, “The most important thing is that other people do not have to go through this”—she left two young kids.

The idea of testing all removed moles and skin tags is potentially very popular, and a petition started by the family has now reached some 35,000 signatures. Tanya Bleiker, the previous president of the British Association of Dermatologists, recommended that all skin lesions, even if removed for cosmetic reasons, as Zoe’s was, should be sent for histopathological testing to confirm that they are benign—the hon. Member for Rhondda (Chris Bryant) also made that recommendation—because they might be deep rooted in the skin. Mr Ashton, one of our consultant dermatologists on the Isle of Wight, explained to me on Friday that innocent-looking moles can sometimes be the most deadly. They might look benign on the surface, but underneath they are malignant and hide melanoma.

I urge the Government to set out further plans on raising awareness of moles, as this is relatively easy to do. If I understand correctly, including this in nurse training and general practitioner training, especially in sunnier parts of the country along the south coast—places like Cornwall, Devon, the Isle of Wight and Hampshire—could be exceptionally valuable.

--- Later in debate ---

[The Minister of State, Department of Health and Social Care (Helen Whately)]

I commend my hon. Friend the Member for Isle of Wight (Bob Seely) for securing this debate, and on telling us Zoe’s story so powerfully. It is a truly heartbreaking story of a young mum of just 26 with so much life ahead of her. It was harder still to hear because Zoe did the right thing and asked her GP about her mole, yet her skin cancer was not diagnosed until so late that she died just 55 days later. I pay tribute to Zoe’s family, including her mum, Eileen, who have campaigned to stop other people going through what they have gone through, and to Zoe herself. When I looked earlier this evening, more than 34,000 people had signed the petition.

Like Zoe’s family, as cancer Minister I want to stop people going through what they have been through. I want us to get better at preventing, diagnosing and treating cancer. Although we cannot remove the risk of skin cancer in its entirety, we can raise awareness of the things that increase the risk and help people take steps to protect themselves. Most skin cancers are caused by exposure to the sun. Getting sunburnt increases the risk—especially getting sunburnt as a child—as does using sunbeds. Those who have fair skin are at greater risk. As my hon. Friend told us, the lovely sunshine of the island he represents has its downsides, as does the healthy outdoor life that he describes.

As well as raising awareness of risks, we need to raise awareness of early signs and symptoms, and then what to do. We in Government are doing that. For instance, the NHS “Help Us, Help You” campaign has used TV advertising, social media and regional press to get the message out to people to get worrying signs checked out. We know that some people delay getting a check. That campaign has particularly sought to overcome those fears. If you are worried, it is always better to get checked out. Most people will get the all-clear, but the sooner you get a check, the better, because an early diagnosis improves the chances of successful treatment.

I know that Zoe did the right thing and asked her GP, which brings me to the importance of accurate diagnosis. For Zoe’s specific case there has been a full investigation locally, and I know the findings have been acted on. Specifically, teledermatology is now offered by all GPs on the Isle of Wight, and is increasingly available across the NHS. It involves a specialist medical photographer taking a detailed photograph of a skin lesion to check it for signs of cancer. That is a step on the path to more tests to confirm whether someone has cancer or is given the all-clear that no further tests are needed.

On the role of teledermatology, almost £1.5 million of our elective recovery funding has been allocated to seven cancer alliances to pilot self-referral for cancer symptoms, including skin cancer symptoms. I heard my hon. Friend’s argument for Zoe’s law to require all moles or skin tags removed to be tested for melanoma. I also heard him saying that he was not expecting an answer here and now, which I appreciate. I can assure him that I will take his argument away, look into it and then write to him with a full response on his proposal. I will also take away the suggestion from him and from other hon. Members about looking at the broader education of other people who might be able to spot something that might be an early sign of skin cancer. I recognise that people may not be able to see their back or the back of their head, for instance. Indeed, there may be opportunities to look at wider education. For sure, raising awareness overall of skin cancers and of what a person should do if they have a sign or a symptom will indeed mean that more people will know what to look out for.

[Jim Shannon]

I commend the Minister for her very positive answer and for what she said in relation to the nine centres across the United Kingdom, which is where the hotspots are. In an intervention on the hon. Member for Isle of Wight (Bob Seely), I referred to a pilot scheme in my trust area, the South Eastern Health And Social Care Trust, which seems to be having some good results. I always believe that the exchange of ideas is good for us all. It helps us to see what is being done here and it might help the Minister to know what we are doing back home.

NHS Industrial Action: Government Preparations

Jim Shannon Excerpts

Monday 12th December 2022 Commons Chamber

[Will Quince]

We have already been clear that we would be very happy to meet the unions, and I understand that a meeting is being organised, but let me reiterate the point about what exactly the Royal College of Nursing is asking for: an uplift that is 5% above RPI inflation. Uplifting pay for all staff—this is based on 19.2%, within the agenda for change—would cost approximately an additional £10 billion. The hon. Member for Rhondda (Chris Bryant) talked about things like test results; the £10 billion that we would spend on such an uplift is £10 billion that would come out of the NHS budget. That is £10 billion that we would not be able to spend on hugely important issues such as tackling the elective backlog.

[Jim Shannon (Strangford) (DUP)]

I was on the picket line with NHS staff in Newtownards in my constituency this morning. I do not expect to be reprimanded for that, by the way—I am quite sure I will be okay.

I want to ask the Minister a positive, constructive question. All the men and women want who were on the picket line at Ards Community Hospital in Newtownards this morning is a wage that helps them to survive. The women and men I talked to this morning are not surviving; they are visiting food banks. It is not just the nurses: it is the porters, it is the ward staff, it is everyone. Will the Minister and the Government go just that wee bit further to get a settlement?

[Will Quince]

I understand why the hon. Gentleman is asking that question, and I am sorry to sound like a broken record, but we accepted the independent pay review body’s recommendations in full. As a result, more than 1 million NHS workers were given a pay rise of at least £1,400. For newly qualified nurses, it was a 5.5% increase. Those on the lowest salaries, whom the hon. Gentleman referred to, are seeing a pay rise of up to 9.3%. Again, that is on top of 3% last year, when public sector pay was frozen.

Nobody wants to see industrial action go ahead. My message to the unions is “It’s good to talk—let’s talk. I know the meeting is being set up. Let’s do all we possibly can to avoid industrial action this winter.”

NHS Workforce

Jim Shannon Excerpts

Tuesday 6th December 2022 Commons Chamber

[Wes Streeting]

My hon. Friend is absolutely right. This is the tragedy of where we have got to on social care in particular. The Government have allocated half a billion pounds to alleviate pressure this winter, but not a penny of it has reached social care providers. Not a penny of it is currently being worked in action to try to deal with delayed discharges. I have no doubt whatsoever that one reason why it has taken so long from that commitment to getting money to the frontline is the constant churn of Ministers that we saw over the summer. The absolute circus that we saw in the Conservative party has had a direct impact on the competence of effective Government in this country. We now have ineffective Government, so even when the Government seek to do the right thing and allocate the resources, they cannot get the money out the door far enough because Ministers seem to change week in and week out.

[Jim Shannon (Strangford) (DUP)]

I commend the shadow Secretary of State for what he is saying. When it comes to staffing issues, one thing should clearly be done. Does he agree that part of the reason why we rely so heavily on agency staff is because our NHS staff have migrated to agency working, where there is less pressure, so the Government should spend less money on agency workers and give our NHS staff greater support and appropriate pay so that they can stay in the NHS?

[Wes Streeting]

I strongly agree with the hon. Gentleman. I will come shortly to talk about industrial action, but this should be at the heart of the Secretary of State’s thinking. The demands from staff trade unions, whether on pay, terms and conditions or the wider pay machinery, should be seen not just as a negotiation with staff unions but as a retention issue. We are losing staff faster than we can recruit them in some places—especially in areas such as midwifery—and if we lose the staff that we have, even Labour’s plans to undertake the biggest recruitment in the NHS’s history would not be as effective as they would be if we kept staff in the service today. That is why I urge the Secretary of State to treat those NHS staff with respect, get their representatives around the table, and negotiate a solution.

I am aware that the situation in the NHS in Northern Ireland is the worst that we see throughout the United Kingdom. The shadow Secretary of State for Northern Ireland, my hon. Friend the Member for Hove (Peter Kyle), visited NHS services in Northern Ireland only recently. I have no doubt that we need to get effective governance back up and running again in Northern Ireland as well. I urge the Government to discharge their responsibilities in that area, too. Certainly, when Labour was last in government, I do not remember Labour Prime Ministers taking such a complacent, lackadaisical or indeed absent approach to the governance of Northern Ireland. I hope that we can see a breakthrough of the deadlock so that the people of Northern Ireland get the Government they deserve in Stormont, as well as the United Kingdom getting the Government it deserves here in Westminster.

Waiting lists were already at a record 4.5 million before the pandemic. Ambulances were taking longer than is safe to reach patients in an emergency before the pandemic. Patients were waiting longer than four hours in A&E before the pandemic. The 18-week guarantee for elective treatment had not been met for four years before the pandemic, and more patients have waited longer than two months to start their cancer treatment every year since 2010. From the moment the Conservatives entered power, things began to deteriorate. It is not just that the Conservatives did not fix the roof while the sun was shining; they blew off the roof and ripped up the floorboards, and then they wonder why the storm did so much damage.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 6th December 2022 Commons Chamber

[Helen Whately]

After hearing the hon. Member’s point, I should think that he therefore welcomes the fact that we have set up integrated care systems, which bring together health and social care. The £500 million discharge fund that I have mentioned is allocated to local areas to be pooled into the better care fund and spent jointly between local authorities and the NHS. Funding is an important part of this. In the autumn statement, social care received a historic funding settlement of £7.5 billion over the next two years. That is important, as well as ensuring that the NHS and local authorities work together hand in hand.

[Jim Shannon (Strangford) (DUP)]

5. When his Department will publish the 10-year cancer plan.

[The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)]

Earlier this year, we held a successful call for evidence on a new cancer plan, which received 5,000 responses. We are now considering those responses and how we can best support the diagnosis and treatment of cancer patients. I will be in a position to update the House shortly.

[Jim Shannon]

I thank the Minister for her response, but it has been five months since July, when the 10-year cancer plan was due to be published, and 10 months since February, when the war on cancer was announced. While the Government have delayed, cancer patients have faced unacceptable waiting times for diagnosis and treatment. Performance over the past five months has been the worst on record against the target of a 62-day wait between the GP referral for suspected cancer and the first treatment. I ask the Minister respectfully: does she agree that we in this House and the people of this country now need a long-term, ambitious plan to reduce waits and ensure that cancer patients in this country have the best outcomes possible? Will she set out a timeline—not just say “shortly”—for delivering such a plan?

[Maria Caulfield]

As the hon. Gentleman knows, I cannot comment on what is happening in Northern Ireland, because health is a devolved matter. I can only update him on what is happening in England. We are not waiting for a cancer plan to start on the backlogs: that is why this Government are investing £8 billion over three years to clear the elective backlog. We are seeing record numbers of patients. Cancer treatments continued throughout the pandemic, but we are seeing a higher number coming through than usual. Despite the increase of more than 129% in patients getting urgent GP referrals since September 2019, 91% of patients in England are receiving their treatment within 31 days of the decision to treat, compared with just 87% of patients in Northern Ireland in June. We are very committed to reducing cancer waiting times. I suggest that the hon. Gentleman may wish to speak to the Minister in Northern Ireland as well.

World AIDS Day

Jim Shannon Excerpts

Thursday 1st December 2022 Commons Chamber

[Lloyd Russell-Moyle (Brighton, Kemptown) (Lab/Co-op)]

I beg to move,

That this House has considered World AIDS Day.

I declare an interest as the vice-chair of the all-party parliamentary group on HIV and AIDS and honorary patron of the British HIV Association, and of course as someone who is personally affected by these issues.

I thank the Backbench Business Committee for granting this debate to mark World AIDS Day. Every year, on 1 December, the world commemorates World AIDS Day. People from around the world unite to show support for people living with and affected by HIV, and remember those who lost their lives to AIDS. At 5.30 pm, I, among the community in Brighton, will read out the names of all the people who have died of AIDS in Brighton in the 40 years since the first death, as we do every year. Vigils such as that will be happening up and down the country: in London, in Birmingham, in Manchester, in Oxford, and in other places.

This year’s theme is “equalise”. It is a recognition of the health inequalities that still affect far too many children, men that sleep with men, transgender people, drug users, sex workers and people in prison. Those are the populations most affected by HIV and AIDS in their respective countries; different countries might have different, more focused populations, but those are the groups. Fundamentally, however, the groups that are most at risk are people who are marginalised from healthcare, and that is what we need to equalise—that is what we need to sort out.

This year marks the 40th anniversary of the death of the former Hansard reporter Terry Higgins, who died of an AIDS-related illness on 4 July 1982, and the creation of the now well-known Terrence Higgins Trust. On behalf of the APPG, I thank the Terrence Higgins Trust, not only for the work it has done over the past 40 years but for the work it keeps doing, pushing for us to have no new transmissions of HIV by 2030. That seems a remarkable target, but it is within our reach; it will help the estimated 106,000 people living with HIV in England that we know of. The work of the Terrence Higgins Trust, along with the National AIDS Trust and others, continues to lead the way, and I am delighted that the two organisations are working closer together. I hope that collaboration continues.

Ahead of World AIDS Day in 2018, four years ago now, I spoke in this Chamber about my own diagnosis. I said then that World AIDS Day was

“deeply personal to me, because next year I will be marking an anniversary of my own”.—[Official Report, 29 November 2018; Vol. 650, c. 492.]

Now, of course, it is 14 years since I became HIV-positive. It has been a long journey, from fear to acceptance and to today, where I now play a role of advocacy, knowing that my treatment keeps me healthy and protects any partner that I might have, preventing me from passing on the disease. Since then, further developments have taken place in the fight against HIV/AIDS—many of them positive, but there have been some setbacks, which I wish to talk about in a bit.

We have, of course, a HIV action plan in England, setting clear goals and milestones for achieving our target. Similar plans are set to be launched in Scotland and Wales—we hope they will come quickly. Last year’s HIV action plan for England sets out how we will achieve an 80% reduction in HIV infections by 2025, building to the end of transmissions by 2030. First, that plan will prevent new infections by expanding and improving HIV prevention activities, investing £3.5 million in a national HIV prevention programme up to 2024, and ensure that PrEP—pre-exposure prophylaxis—is expanded to all key groups. Secondly, it will scale up HIV testing in high-risk populations where uptake is low, and ensure that new infections are identified rapidly, including through the expansion of opt-out testing in A&E departments in areas of very high prevalence of HIV. That testing will be backed by £20 million over the next three years.

Thirdly, the plan will ensure that, once diagnosed, people rapidly receive treatment. When I was first diagnosed, you waited until your CD4 count was below 200, which is when you can start to get infections and AIDS can start to be diagnosed. At that time, we did not know whether the drugs would cause continuing side effects; now, as soon as someone is diagnosed, they go on the drugs, because we know that they have very few side effects. Of course, each person has to get the combination that is right for them, because everyone reacts differently, but we have a good array of drugs with which to do that. That means that very quickly—within a matter of months—new people who are diagnosed can be undetectable, and can effectively go about their life without fear or favour. That is a remarkable change in those 14 years.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman, and commend him for his stance and leadership in this House—and, indeed, outside of this House—when it comes to HIV/AIDS and how to live with it, as he does. In Northern Ireland, which he did not refer to, the Public Health Agency has responsibility for this area. Its hope and ambition is to reach the target of eliminating HIV transmission by 2030, and it seems confident that it can do so, because of the PrEP that he has referred to. It is good sometimes to mark and record the things that are going well.

[Lloyd Russell-Moyle]

It is remarkable. If we achieve that 2030 target in this country, and if we then achieve a roll-out of it globally—that is a lot of ifs—HIV will be the first disease that we have rolled back via treatment and prevention, rather than vaccines. It would be a world leader, and hopefully a pioneer in how we can treat and test other diseases, particularly with mass testing, which I will come on to in a second.

If all that happens, we will meet the 2030 target, but—as we always say—the Government need to do more. To start with, they need to expand opt-out testing. That has been trialled in areas with very high prevalence—that is, Brighton, London, Manchester and Blackpool. Not all of London was originally included in the opt-out testing, but it took the decision to expand that to all hospitals in London, sharing out the money. Remarkably, that has shown that, in non-high prevalence areas, the percentage of people coming back with an HIV-positive test is still significant. The argument, therefore, is to roll that out to all areas.

Over the past 12 months, we have seen real successes in opt-out testing in England. That happens when somebody is already having their blood taken in A&E and the vial is sent off for an additional test. We are testing for HIV and hepatitis B, unless someone opts out. No one is forced to do this, but I understand that very few people opt out.

The pilot’s results have been astonishing. In just three months, 102 people were newly identified, and 70 people were identified as having dropped out of treatment. If someone drops out of treatment, they are a risk not only to themselves, but to the wider community. Those people have been brought back into treatment and that has saved lives. The results are clear: opt-out testing is working.

On a side note, it is also possible to test for syphilis with the same vial. However, it was not possible to expand this to syphilis, because syphilis testing is paid for by local authorities, not by NHS England, and the local authorities were unable to identify where people were from, because hospitals are not coterminous with local authorities and it was too complicated. That seems ridiculous. We need the Government to sit down with local authorities or to provide for that through central funding. If we are taking the vial, we can run it through the same machine. If the only reason stopping us is bureaucratic, I do not see why we cannot do this. We should test people routinely for as many things as we can, if we know that it will help people’s lives. We know that there is a spike in syphilis in certain key populations.

If this vital programme is eventually expanded to all towns and cities with high prevalence, it will be a game- changer. Where London has expanded the programme, it has already been worthwhile financially in areas that do not have very high prevalence. The programme should also be expanded to sexual health clinics to ensure that everyone going to one is tested for HIV. This may be a surprise to many, but that is not always done routinely and it is not an opt-out system. Actually, an HIV test is becoming less, not more common, because more sexual health clinics are moving to online services. Online services have some great advantages, but one downside is that they require people to collect a vial of their blood, which often does not happen, or does not happen effectively, so HIV test rates are lower. We need to ensure that, when people attend a clinic, it is routine and there is an opt-out system. Some clinics do this already, but it is not universal.

I spoke about the HIV prevention drug, PrEP, in 2018. We have a come a long way since the PrEP impact trial. To remind colleagues, PrEP, which is a pill that people take daily, contains two of the three drugs that someone with HIV would have. In fact, I have now been reduced to two because the latest evidence shows that, when someone gets to “undetectable”, the drug load for people who have HIV can be reduced to, effectively, just the PrEP load. The drugs will not be exactly the same as I take for PrEP, but some people can maintain on those as well. So this is also about new interventions that can reduce the costs and the amount of drugs that we are providing.

PrEP prevents HIV and the pill is covered by NHS England, but thousands are still missing out. They are struggling to get PrEP appointments because of under-resourced sexual health services. That is laid bare in the latest report from the National AIDS Trust, the Terrence Higgins Trust, PrEPster, Sophia Forum and One Voice Network. Due to the fragmentation of services in England, the drug PrEP is paid for by NHS England. That is a real milestone for the NHS, and I congratulate the Government on getting that out eventually, after our interventions.

Anyone who is currently sexually active should be tested by sexual health services every three months, and anyone on PrEP should be tested every three months. In theory, therefore, there is no additional resource for sexual health services for someone on PrEP, because the only people on PrEP should be those who are sexually active, or drug-injecting users who should also be tested, and so on—we should not give it to people who do not need it. But our sexual health services in this country rely on balancing the budget through the fact that people do not attend as regularly as they should. Therefore, that limits the places for PrEP appointments and limits the people who can get access to the drug that the NHS is paying for, even though they are entitled to it and should be offered that level of service.

Awareness of PrEP is far too low and it cannot be given out by GPs, pharmacies, community or maternity services. That means that the burden is solely on local government-funded sexual health services. We all know what is happening with local government and probably do not need to go there today—that is a whole other debate.

If we are going to meet our 2030 target, it is vital that everyone who is at risk of acquiring HIV and who wishes to access PrEP can do so as a key tool in completely and effectively preventing new HIV transmissions when it is taken as directed. Over the past two years, the all-party group on HIV and AIDS has published three important reports. We published “Increasing and normalising HIV testing across the UK”—which I just touched on—and “Nothing about us without us”, which addresses the needs of black, Asian and minority ethnic communities in the UK. Those communities are some of the hardest-hit by HIV in this country and are the least likely to have HIV testing done routinely. The roll-out and trial of the saliva HIV testing, which the Terrence Higgins Trust did two years ago and last year, was particularly effective in those communities. It was seen as less invasive, more private, easier to get hold of and possible to do through online and postal services. The Government should consider whether that process should be normalised nationally or provided cheaply and accessibly.

Our other report, “HIV and Quality of Life—What do we mean? How do we achieve it?”, was published today, and my colleagues have been launching that in Brussels with our partners in Europe. Those reports have been made possible only through the evidence provided by the strong HIV sector that we have in the UK. Its continued insights and hard work are appreciated.

The latest data, however, is not quite as positive. There were 2,692 people diagnosed across England in 2021. That is up 0.7%, from 2,673 in 2020. Some might say that is a small amount but, in 2022, there was a fall of 0.2% and, in 2019, there was a fall of 33%. We are clearly plateauing and there is a danger that we are starting to get more diagnoses. That might be positive because we are delving down to the hardest-to-reach areas, but we need more evidence on why that has plateaued and why it is creeping up before we can be sure that that is something to celebrate, rather than to be worried about.

To keep on track, it is vital that we use every lever available to end HIV transmission and to ensure that we do not plateau, as the numbers show. As I said, we can end transmission by 2030 and I strongly believe that the UK will be one of the first countries to do so. We are a world leader. At the beginning of the week, I spoke to our London NHS colleagues, who said that it is the first time in their career that people have been phoning up from around the world to say, “How are you doing the opt-out testing? How are you doing the PrEP roll-out? We want to learn from you.” That is remarkable and we should be deeply proud of that. The head of UNAIDS came to London and Brighton and we showed her the HIV testing vending machines that we have in Brighton. She said, “I thought that I would never learn anything for the developing world from a rich country. I was here as a courtesy visit, but I have seen what you are doing and how we can roll that out to parts of Kenya and Uganda, and community settings around the world, with HIV testing vending machines that run using solar panels”.

--- Later in debate ---

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to speak in this debate, and to follow the right hon. Member for Romsey and Southampton North (Caroline Nokes). She and I seem on many occasions to be on the same side in debates in the Chamber and in Westminster Hall. I commend her on her work to promote the values, aspirations and concerns of women in this House, this country, and the world.

I also commend the hon. Member for Brighton, Kemptown (Lloyd Russell-Moyle) on setting the scene so well. I do not think that I have ever missed a debate on HIV/AIDS in the Chamber or Westminster Hall, and I came along to contribute, and to support him. I commend him, as I said in my intervention; he has been a shining light to many who suffer from AIDS across the whole United Kingdom of Great Britain and Northern Ireland, and he has contributed in an exceptional way today. Well done to him.

As the hon. Gentleman said, the global theme for this World AIDS day is “Equalise”. I thought to myself, “That is exactly what we should try to do.” We should not only make sure that everyone in this great United Kingdom has access to PrEP, which he referred to, but ensure the same access to medication and treatment across the world. He outlined that point very well, and I fully support it. Let us replicate what we do here across the world.

On World AIDS Day, UNAIDS asks that we take four actions. The first is to increase the availability, quality and sustainability of services for HIV treatment, testing and prevention, so that everyone is well served. The second is to reform laws, policies and practices in order to tackle the stigma and exclusion faced by people living with HIV and by key and marginalised populations, so that everyone is shown respect and is welcome. The hon. Gentleman addressed that very well. The third action is to ensure the sharing of technology, so that communities in the global south and the north have equal access to the best HIV science. Lastly, communities should be able to make use of and adapt the “Equalise” message to highlight particular inequalities that they face, and should be able to press for the action needed to address those inequalities.

STOPAIDS got in contact with my office before the debate. It informed me that the UK, which has provided some £15 million a year to UNAIDS for the last five years, has cut its funding by more than 80% to just £2.5 million this year. I concur with the hon. Member for Brighton, Kemptown that that is a worry, and I think that concern will be expressed by others in the Chamber, too. Even though the Minister does not have direct responsibility for the issue, perhaps he will speak about that. The cut jeopardises work that supports some of the most marginalised. The Government and our Ministers should uplift that funding, even if just slightly, to ensure that charitable organisations are fully funded to do their work.

I want to outline what we are doing in Northern Ireland through the Public Health Agency, which I mentioned in an intervention on the hon. Member for Brighton, Kemptown. I want to mention its achievements, even though there may have been a slight increase in the number of those with HIV; the issue is how we combat that. I think that what it has done is excellent. Its 2022 annual surveillance report on sexually transmitted infections, which is based on data from ’21, showed that there were 76 newly diagnosed cases of HIV in Northern Ireland in 2021. That is a 12% increase from 68 diagnoses in 2020, but—this is the key—more HIV testing was being done. Almost 80,000 HIV tests were carried out in Northern Ireland in ’21, which is a 21% increase on the approximately 66,000 done in 2020. The PHA said:

“We are making great progress towards eliminating HIV transmission by 2030. Frequent HIV testing, the offer of PrEP to those most at risk of HIV, together with prompt treatment among those diagnosed, remains key to achieving this.”

So there is more testing, more contact, and fewer people getting AIDS. That is an example of what we are doing in Northern Ireland, and I commend the PHA for doing that so very well.

In 2019 in Northern Ireland, 40% of those newly diagnosed with HIV were gay and bisexual men. In comparison, 52% of cases involved heterosexual contact. There is a stereotype and an assumption that all people with HIV or AIDS are gay or bisexual, but the stats clearly dispute that. As the right hon. Member for Romsey and Southampton North said—this applies to Northern Ireland as well—there must be greater awareness that not only gay men get AIDS. It has impacted the lives of many women, too. Unfortunately, many of the people represented by those 52% of cases in Northern Ireland are ladies. The right hon. Lady outlined the point exceptionally well. It is good that we have it on record that the disease needs to be tackled head-on, always. The HIV strategy must reflect the fact that more heterosexual people get HIV than gay or bisexual people. A new strategy is clearly needed—one that takes on board the figures, and helps us to understand the issues even better.

In Newtonards in my constituency, the Elim church, which is very active, has had an incredible strategy for Swaziland in southern Africa. It has helped to build hospitals, health clinics, schools and other buildings, which has provided jobs. It has also actively helped to address the AIDS epidemic in Swaziland. Those things need to be done proactively and positively. I commend the Elim church and mission in Newtownards as an example of what can be done where there is the will and understanding, not through their own efforts alone but working collectively with others to reduce the number of people in Swaziland who have AIDS.

There are many orphans in Swaziland whose parents died due to AIDS, and some of them were born with AIDS through no fault of their own, and the Elim church and mission actively works with them. They come to my constituency every year as part of the church’s missionary work, and I have never failed to be moved by their singing and joy. They are receiving treatment and medication, too.

Northern Ireland has only one HIV charity, Positive Life, which I commend for how well it does for us in Northern Ireland. Positive Life attends the Democratic Unionist party conference every year, and I make it my business to thank the charity every year for its tremendous work to promote a positive future for people living with or affected by HIV in Northern Ireland. It provides free rapid testing for those who are concerned that they might have HIV, and it offers support along the way. We are all indebted to Positive Life in Northern Ireland, and to all the other charities that play an invaluable role in battling HIV and making the stereotypes and stigma a thing of the past.

The Public Health Agency has a clear strategy for those in Northern Ireland who have AIDS, whether through transfusions, activities or whatever it may be. I am pleased to say that the positivity not only in Northern Ireland but elsewhere encourages me and gives me great hope. The hon. Member for Brighton, Kemptown is an example of that positivity, for which I commend him. I also commend the Minister in anticipation of his answers, which I hope are along the lines we expect.

Accountability in the NHS

Jim Shannon Excerpts

Wednesday 30th November 2022 Westminster Hall

[Sir Mike Penning]

I thank the hon. Member for his intervention. We have seen during covid that, actually, when things get really bad, Ministers can step in and Prime Ministers can step in, but when we talk about individual cases, they cannot.

In the case I am referring to, I ended up writing to the Minister, to be told to go to the ombudsman. I got fobbed off by the ombudsman, after we had been to the trust three or four times. I then wrote to the Minister again—this is over the course of years—to be told to take legal advice. This particular person has now been told, “Go back to your GP and get them to re-refer you if you’ve still got problems.” He has problems because they did not do the operation properly in the first place, and it has had a massive long-term effect on this gentleman’s quality of life.

That is not the only case. I have been here for nearly 18 years, and I worked for a Member of Parliament for many years before that. In every constituency, this sort of case is brought before the MP. I have another example. Last summer, in the middle of heatwave in July, when the temperatures were unbelievably high, a very vulnerable young lady was brought in for a scan at my local hospital. She is the most vulnerable young lady. Her mother cares for her 24/7. She has carers in. She is a wheelchair user or bed-bound. She was left on a trolley in the heat for five hours when her ambulance did not arrive.

When I contacted the trust and said, “What happened there?” it blamed the ambulance trust. When I contacted the ambulance trust, it said, “No, it was cancelled by the trust—it was their fault.” I do not care whose fault it was. It was the NHS’s fault that this happened to a very vulnerable young lady. She had no drink and no food. She was very, very ill. The ambulance trust said that the return journey was cancelled because she was so poorly on the trolley—well, she was so poorly because she had been left there for five hours!

Trying to get to the bottom of what happens within the NHS when something goes wrong is so difficult. We have seen terrible situations in maternity services and in trusts around the country. These problems need to be addressed early on, instead of the drawbridge being brought up and people having to go through a massive complaints procedure where they have to complain three times before going to the ombudsman, and then the ombudsman will say it is out of time, and if they are not careful, they cannot go to court because that is out of time too. Is that the way we want our NHS to be seen by the public, who love the NHS?

The NHS sees the NHS as a single entity. As MPs—and I was a shadow Health Minister for four and a half years—we understand that it is not a single entity. It is a set of silos where everybody passes the buck back and forth. What we need is joined-up thinking. When Members like myself write to Ministers about these issues, the answer is not to say, “Nothing to do with me, guv” and pass it down the line to the ombudsman or a lawyer. That surely costs more money and does not put the NHS in a particularly good light with my constituents who have had their operations botched

[Jim Shannon (Strangford) (DUP)]

I congratulate the right hon. Gentleman on securing the debate. He talks about silos, and I want to give him an example of that in my constituency. Many people await their care packages in order to be released from hospital and get better at home. On the other hand, there are people waiting urgently for hospital beds who cannot get one. Does he agree that there must be greater communication between trust managers and social care workers to ensure efficiency of care in the community, which would free up hospital beds and allow people to be treated quicker? In other words, we should do away with the silos and get things co-ordinated.

[Sir Mike Penning]

I completely agree with the hon. Gentleman. I know that right next to my constituency, my hon. Friend the Member for Watford (Dean Russell) goes to Watford General Hospital and looks at the boards to see whether people can medically be discharged, but they cannot because there is a lack of joined-up thinking.

This is different. This is about the need for the NHS, when it may or may not have made a mistake, to address it full-on at the start. It should not draw up the drawbridge, with people having to go through the long, drawn-out procedure of making complaints and going to the ombudsman. For a Minister to say to a colleague and fellow MP, “Perhaps this person needs to take legal advice,” is not the attitude we should have towards people who have done the right thing. The NHS has said that they should have an operation, and the NHS has mucked up and botched—I use that word under privilege. At the same time, the person’s life has been detrimentally affected for years and years to come.

I know the Minister is not the Minister responsible, but because we are all constituency MPs, I guarantee that before he was in his position, people were at his surgeries or wrote to him to say, “This happened to me within the NHS. What can you do to help me do something about it?” Somewhere along the line, perhaps the short debate we are having today will nudge the Department of Health and Social Care and the Government —I was a Minister in several Departments—to look at ministerial oversight.

Covid-19: PPE Procurement

Jim Shannon Excerpts

Thursday 24th November 2022 Commons Chamber

[Neil O’Brien]

The people who came through the high-priority route were not politically connected people, except in the sense that they were being referred by MPs across the House. I do not know the exact details of the north-east supplier that the hon. Gentleman mentions. If he gets in touch, I will be happy to take that up and provide him with a full explanation of what the issue was with that bid for a contract.

[Jim Shannon (Strangford) (DUP)]

I thank the Minister for the answers he has given. There was a heavy use of direct award contracts to purchase PPE items. As of April 2021, £371 million had been paid for PPE direct award contracts in Northern Ireland. Does the Minister agree that, in hindsight, there should have been better insight into the supply chains of this PPE, where it came from and who was making it, given the reports that PPE contracts were given to Chinese firms using labour schemes?

[Neil O’Brien]

The hon. Gentleman always makes constructive suggestions, and today is no exception. He knows that we have an ongoing inquiry into the lessons that can be learned and a dialogue with the Health and Social Care Committee about many of these issues. Given its heritage, Northern Ireland was an important supplier of textiles and PPE equipment. Inevitably, given the global balance of production, a lot of items did come from China, as he says, but as part of the lessons learned, we should be thinking about domestic supply.

NHS Staffing Levels

Jim Shannon Excerpts

Tuesday 22nd November 2022 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to speak in this debate. I thank the hon. Member for Wirral West (Margaret Greenwood) for leading the debate. Like her, I acknowledge and appreciate the incredible work of all our NHS healthcare professionals in all areas of our health system over the last number of decades, especially throughout the pandemic, when we appreciated them even more than normal. I place on the record my genuine thanks to them for their commitment and their efforts through the covid crisis, which will continue to have impacts on the efficiency of our NHS for some time.

Our national health service is one of a kind and we must do everything in our power to protect it and ensure that it is given what it needs to ensure its success. Just yesterday in the main Chamber, I asked the Chief Secretary to the Treasury about retaining our nurses. How we do that is quite simple: we pay them the wages that they need. There is something drastically wrong if someone can become agency staff and get better wages for doing the same job. I am always respectful to the Minister, and I do not say that to chasten or to be aggressive, but we really do need to pay our nurses what they deserve. Perhaps the Minister can get back to us on that point.

It is very challenging to cover all the issues about NHS staffing. The NHS is one of the largest employers in the world, with more than 1.3 million staff, with 13,000 of them working back home. There is no secret that there are staffing issues for many different reasons. I have heard before from younger people that the educational process to becoming a nurse is purely based on exam results. I understand the need for training. Nursing, mental health nursing, medicine and dentistry require degrees from universities. Many universities refuse to take students who do not achieve high grades in their entry requirements. Perhaps it is time to look at whether, if the grades are not achievable for them but they have an interest in the subject matter, they should be given training to deliver that. We do not always have to aim for the gold star ones. There are people who might not achieve all of the grades that they should, but could still be darn good nurses and do well. I ask the Minister if he could give us his thoughts on that.

The hon. Member for Westmorland and Lonsdale (Tim Farron) mentioned GPs. Back home, GPs are really important. If one or two fall away from the local health clinics and surgeries, we automatically have a crisis among our GPs. So, let us encourage more GPs to come in. To do that, we will probably have to pay them better too, so that they do not wish to go anywhere else—overseas or wherever. We have all heard about the horror stories that illustrate their reasons for doing that.

I heard from a constituent just last week who was in a car accident. Her car was written off, but, luckily, there were no life-threatening injuries. However, the ambulance came and she waited in the ambulance queue for eight hours. She was not allowed to move from the stretcher, was not able to use the toilet, and had no water to drink. That is just an example of some of the crises we have. That is not the Minister’s fault—it is a devolved matter and I understand that—but it is just an illustration, and I suspect that other Members will have their own examples.

I would make a plea on behalf of the Royal College of Psychiatrists, which has stated that, over the past year, the number of full-time-equivalent consultant child and adolescent psychiatrists in the NHS has declined, while referrals to child and adolescent mental health services have increased by 24%. We have countless debates in this place relating to better provisions for children’s and teenagers’ mental health, and the RCP tells us that there are simply not enough psychiatrists. Again, I am throwing this at the Minister at very short notice, but I know that his responses are always very helpful. I ask for some help in raising that.

I am also aware of the challenges that the staff face. I thank each and every one of them—I thank them and I praise them. They go home after their shifts, tired and disheartened. The hon. Member for Wirral West (Margaret Greenwood) mentioned that earlier on. It is the truth. With that in mind, we must do more.

I very much welcome the additional money allocated in the autumn Budget, and the Barnett consequentials mean that we will get £650 million. That is a massive help, and I understand that. I certainly hope that that will shield the NHS from inflammatory staffing pressures, but I hope that the Minister can undertake discussions with the devolved Administrations on this issue, and on how we can do it better together. I am always very conscious that the Minister is a gentleman and responds well; I very much look forward to his reply.

--- Later in debate ---

[Will Quince]

The hon. Gentleman is right that that is happening and I will come on to that matter in more detail. I would be happy to meet him, because it is an issue that I know needs gripping not just at the national level but by local integrated care boards too.

As hon. Members have pointed out, training the doctors, nurses and allied health professionals of the future takes time. We have to plan for the next decade now, as the hon. Member for York Central (Rachael Maskell) said. Despite the challenges, we have a growing NHS workforce. We have record numbers of staff working in our NHS. There are record numbers of doctors and nurses. The NHS now has over 1.2 million full-time equivalent staff. In the last year alone, there were over 15,800 more professionally qualified clinical staff in trusts, and 129,800 more hospital and community health service staff than in 2019. Nursing numbers are 29,000 higher than in 2019, which means that we are on track to meet the 50,000 extra nurses manifesto commitment.

However, as the hon. Member for Wirral West pointed out, we face challenges. There are over 132,000 vacancies, including, as she rightly said, 40,000 nursing and midwifery vacancies, and vacancies for around 10,000 doctors. As the hon. Member for South Antrim (Paul Girvan) rightly pointed out, that means an over-reliance on bank and agency staff. They have their place, but they come at a significant cost, of which we have to be mindful.

We have a long-term workforce plan, which is an NHS England-commissioned project that will set out what workforce we need across the next five, 10 and 15 years. As the Chancellor said in the autumn statement, it will be independently verified. It will look at recruitment, retention and productivity. It will look at where the challenges and the gaps are. As the hon. Member for York Central, who is no longer in her place, rightly asked, what do we need the NHS to look like? Do we need specialists? Do we need more generalists? Do we need a mixture of skills, where people are specialists but also retain generalist skills so that they can do other work? The plan is for the project to report back by the end of this year—very soon—and that independent verification process will then take place. Integrated care boards will need to do the same, or a similar, piece of work at local level.

I am also aware that there are specific challenges. The hon. Members for Strangford (Jim Shannon) and for Westmorland and Lonsdale rightly raised mental health services. An extra £2.3 billion is going in, and our plan is to recruit an extra 27,000 staff, but it is a challenge, which is why we have the advanced bursary in that area. We have increased staff in the area by an extra 5.4%. I know that is not enough, and I know the challenges on local mental health services, so we have to do more.

There is a similar challenge in rural and coastal communities, which the hon. Member for Westmorland and Lonsdale has raised with me many a time. We have to look to expand the apprenticeship route and blended learning programmes so that people do not have to travel to big towns and cities to undertake their training. That work is being done, and there is an extra £55 million for additional placement capacity.

Investment in training is also important. We funded an extra 1,500 medical school places—a 25% increase—last year and this year. That was an investment in five new medical schools. The £5,000 non-repayable grant for nursing, midwifery and allied health professionals has been in place since 2020. There is also additional funding for certain courses, and for things such as support for childcare, dual accommodation, and costs and travel.

[Jim Shannon]

Will the Minister comment on what the Royal College of Psychiatrists has said about staffing shortages?

Huntington’s Disease

Jim Shannon Excerpts

Wednesday 9th November 2022 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is always a pleasure to speak in this Chamber. As the DUP health spokesperson, I wanted to add my contribution today. I congratulate the right hon. Member for Leeds Central (Hilary Benn) on setting out the case so well and on doing so from a passionate, intimate and obviously knowledgeable point of view. It was hard to listen to some of the things he said, not because he does not put them over right, but just because, when we hear the emotion in his voice, we understand that he has a very personal interest in this subject. So, again, I thank him personally, as I think we all do in the Chamber today. I just want to add my contribution and, as I always do, to give a Northern Ireland perspective.

This is a difficult subject to deal with. As the right hon. Gentleman said, this disease does not just affect the person who has it; it can potentially affect the children as well. I think that makes things harder, because if someone has any doubt whatever as to whether they carry the gene, that will impact what they do when it comes to marriage, having children and having relationships, but also what will potentially happen to them in the latter part of their life. Therefore it is important that we take the right action to make our services better, and that is what we want to try to do.

May I say what a pleasure it is to see the shadow Ministers, the hon. Members for Leicester West (Liz Kendall) and for Paisley and Renfrewshire North (Gavin Newlands), and to see the Minister in her place two days running? We are doing well here, so we are. The Minister tries extremely hard to answer the questions that we put forward, so I thank her for that. I am very pleased to see the Labour shadow Minister—a fellow Leicester City supporter—in her place. We won 3-0 last night, which was a good result. That is by the way and nothing to do with this debate; it is just for the hon. Lady and me to glory in that victory, as we do, personally and collectively.

We need to have better mental health services for patients suffering with this disease and to encourage more funding into research. The right hon. Member for Leeds Central was right about the importance of research; I will comment on research later, but he was right to mention the need for it. In a way, this debate follows on from some of the questions about research in the debate on pancreatic cancer that I secured in Westminster Hall yesterday. We have to focus on research in a deeper and stronger way, and I look forward to hearing the comments of others about what we can do for our constituents.

Health is a devolved matter for Northern Ireland and is not the Minister’s responsibility, but I want to sew a Northern Ireland perspective into the debate. I will replicate the perspective heard in the right hon. Gentleman’s comments, and talk about what we in the United Kingdom need to do in Northern Ireland, Scotland and Wales. I look forward to hearing from my friend and colleague in the SNP, the hon. Member for Coatbridge, Chryston and Bellshill (Steven Bonnar), who always makes a significant contribution on health issues.

Huntington’s services across the UK lack efficiency and funding, especially in Northern Ireland. That is not the Minister’s fault, but it shows what this is all about. One of my constituents made me aware of the fact that there are only two Huntington’s-qualified nurses across the whole of Northern Ireland—for a population of 2 million. Wow! It shocks me to the core when I read that and have to convey the situation in Northern Ireland. As a result of the right hon. Gentleman raising my awareness of this matter, I will take a deeper interest in it from a Northern Ireland perspective. I will follow this up with Robin Swann, the Northern Ireland Health Minister.

In that population of 2 million, the rate of Huntington’s has increased from 6.4 people per 100,000 in 1991 to 12 per 100,000—almost doubling over that period of time. Approximately 223 people have been diagnosed with the disease back home, leaving many with the possibility of getting it genetically. That is one of the worst things: someone could be carrying the disease without knowing—this rare condition is also known as the disease of families.

The hon. Member for Blaydon (Liz Twist), who has left her place, is the chair of the all-party parliamentary group on rare, genetic and undiagnosed conditions. Huntington’s is a rare condition, and sometimes the symptoms are not as prevalent, making it even more essential for people to be aware of them. I would subscribe to the hon. Lady’s line of thought that this should be categorised as a rare disease: statistically, the numbers suffering from this disease are not large, and it is rare in the effect that it has. Government have a policy to deal with rare diseases, so maybe it is time to consider this as one of those, Minister.

Huntington’s Disease Association Northern Ireland has been instrumental in providing support for families—it is not all doom and gloom in Northern Ireland for the families and those who support them. The association has a lovely motto: “Families at the heart of all that we do”. That conveys the importance of what it does, bringing families together so that they can help and reach out to each other. The right hon. Member for Leeds Central referred to that point, and I would reiterate it.

The organisation offers care to loved ones and encouragement throughout the process. Not only that, but it provides hope for those dealing with Huntington’s. Currently, 15 clinical trials of different treatments are under way. We should take some encouragement from that and have hope of a cure. With 15 clinical trials taking place, there is hope that one day soon—not too far away—we will have a cure. If we have that cure, we can deal with these issues better personally.

Sorcha McGuinness of HDANI has stated that, by the late stages of the condition, people will require 24-hour care, as the right hon. Gentleman referred to. They will be unable to move, speak or sometimes even swallow. Other diseases we have spoken about, such as motor neurone disease, are similar.

[Liz Saville Roberts]

The hon. Gentleman is speaking movingly and powerfully. Members will be concerned when we hear from constituents who are being refused personal independence payments. The procedure that applicants—people with Huntington’s disease and their families—have to go through to get PIP, to which they are entitled, is almost a test of their perseverance. As MPs, many of us have to deal with these things, but there must be a better way of dealing with families affected by conditions such as Huntington’s. Given what they are likely to need and that their care needs are so great, we must find a better way of dealing with this issue.

[Jim Shannon]

I thank the right hon. Lady for her intervention, which clearly outlines another issue. It is not always health alone that is an issue; it is also about not being able to work again, as the right hon. Member for Leeds Central said. There is the financial impact on families. There is going on to benefits, which are probably alien to those applying. The system needs a wee bit more compassion for those who are under financial pressure. When they state that they have Huntington’s disease, the reality of what that means should figure in how they are helped through PIPs and other benefits. More often than not, we—elected representatives—come to an acknowledgment and knowledge of those matters through constituents who apply for PIPs. We understand a bit better what they are doing. There is one lady in my office who does nothing but benefits—five days a week. That gives Members an idea of the magnitude of this issue. The right hon. Lady is right, and I thank her for her intervention.

As the disease becomes increasingly debilitating, there is a need for more trained specialists in it. I ask again the question asked by the right hon. Member for Leeds Central, and we look to the Minister for help: what can be done, and what is being done, to increase the numbers of trained nurses? The disease affects the whole of this great United Kingdom of Great Britain and Northern Ireland, so what discussions has the Minister had, or will she have, with the devolved Administrations to ensure that there is a universal strategy for moving forward that encompasses us all?

A nurse who is qualified in Huntington’s plays a key part in the patient’s life, as the link to mental health. Physically, the patient’s body is dying—that is what is happening. Mentally, the disease affects them with anxiety, depression and all those issues. They feel it as it overtakes them and as their bodies decay. The nurse is also the link to neurology, GPs, social services and occupational therapy. I come back to the comment about PIPs made by the right hon. Member for Dwyfor Meirionnydd (Liz Saville Roberts). When our staff fill in PIPs forms, we look at how occupational therapy can add aids that help patients around the house. There is only so much that can be done for Huntington’s, and perhaps other diseases, but there is a key role for the occupational therapist in helping families to deal with it, whether that means a bed downstairs, an extension to the house or a walk-in shower. At certain stages of the game, of course, those things will not help, but perhaps early on they can.

In the area covered by the South Eastern Health and Social Care Trust, which includes my constituency, patients are referred to the Belfast Health and Social Care Trust specialist nurse, and the cost is covered by the Health and Social Care Board. Patients living in the western, northern and southern trust areas in Northern Ireland have no access to Huntington’s disease specialist nurses. Some sufferers have described the condition as a vacuum of silence—that is what it is. They feel almost isolated—on their own—and they are very much dealing with all the issues without help. When people are living in complete isolation, with no assistance, it is important that there is someone they can turn to.

Although I appreciate that health is devolved in Northern Ireland, the situation unfortunately remains the same in the rest of the UK, as the right hon. Member for Leeds Central said and as others will as well. There is no equality of care, and Huntington’s disease patients still feel left behind. Through this debate and through awareness raising, we must try to address that. If the number of people diagnosed with Huntington’s disease continues to rise, the Government must review its status as a rare disease. I said that earlier on, and I say it again. Perhaps we need to move it into a priority category as soon as we can.

I look to the Minister, as I will continue to do whenever she is responsible for the answers, and to her counterparts in the devolved Administrations to initiate funding for greater care for those in the early and latter stages of the disease. We referred to those 15 clinical trials earlier. The right hon. Member for Leeds Central referred to the clinical trials and how important it is to find a cure, help that research and bring new symptoms to light.

Familial carers desperately need their loved one to have professional care, so that they can seek some respite, without being sick with worry about them. They need respite care—we say that often, but Huntington’s disease is such an all-encompassing disease that it totally takes over the life of families. That respite care has to be there to give them a half-day or even a few hours off from the 24/7 focus they have. Some indication in the Minister’s response that there will be some help with respite care would be helpful.