NHS Reorganisation

Jim Shannon Excerpts

Wednesday 12th December 2018 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Member for Warrington South (Faisal Rashid) for bringing the debate. It is a pleasure to follow the hon. Member for Mitcham and Morden (Siobhain McDonagh). The Minister will not be able to answer all my questions because, as everyone knows, health is devolved to Northern Ireland. However, I will illustrate the issues with NHS reorganisation with some stories from the Province. The Minister has a close parliamentary aide from Northern Ireland, so he knows a wee bit about Northern Ireland.

I thank the House of Commons Library for the help it always gives us. Sometimes its information is enormously helpful, and today is one of those days. I have listened with great interest to the contributions so far; it is clear that, no matter the make-up of the constituency—whether Strangford in Northern Ireland, Mitcham and Morden, Warrington South or constituencies in Glasgow, Cardiff or wherever—there are issues. The NHS is struggling UK-wide, and either the pressure goes or its ability to treat will go. We are caught betwixt those two.

I welcome the Government’s commitment to spending £20 billion extra on the NHS, which is a credit to them. My constituency is on the seaside, and lots of people head that way to retire; I suspect things are the same in many constituencies. Our elderly population is growing, and the future demand on healthcare will be enormous. That is why the £20 billion that the Government have set aside is so helpful—because it gives a golden opportunity to plan ahead. The hon. Member for Warrington South was clear about where that should go.

The Library briefing—I am sure that the Minister has had chance to read it; I know that other Members have—contains six simple lessons from the Nuffield Trust, which are very helpful.

“Lesson 1: Avoid the temptations of a grand plan”.

This refers to the complex and heterogeneous nature of healthcare. We all know that it is complex; that is the very nature of healthcare. There are no one-size-fits-all policies that can address the issues. There has to be more than that.

“Lesson 2: Listen to the public—and don’t pretend you will if you won’t”.

As elected representatives, we know how these things work. When constituents come to us and tell us a problem, we listen intently and respond accordingly. This debate will hopefully be an occasion when we can do just that.

“Lesson 3: Don’t treat the workforce as an afterthought”.

It is very important that the workforce are part of a focused reorganisation plan. With the input of the workforce, there is a way forward.

“Lesson 4: Make sure the funding follows the plan”.

If funding commitments are made, they should be in there.

“Lesson 5: Don’t overrate structural reorganisation”.

In other words, it will not be sufficient to add more to the system that is operating on its own without building that structure up.

“Lesson 6: You need a plan your staff can follow”.

Create a policy and strategy that staff can get behind and support. The best way of doing that is to make sure that staff are involved in the creation of the plan, with staff values reflected in targets. All those things are vastly important, and I know that the Minister, who is a compassionate man and understands the issues well, will be able to respond even to the very generic terms that I put that in.

For Hansard and for the record, I will highlight an issue that I know is important across the whole of the United Kingdom of Great Britain and Northern Ireland: GP out-of-hours services. I emphasise the importance of that service, but we have particular problems with it in my constituency of Strangford. Part of any strategy or plan for NHS reorganisation should look at that.

My local health board is the South Eastern Health and Social Care Trust—clearly, not the responsibility of the Minister—which covers my entire constituency. On selected days just last month, the GP out-of-hours service in the main town in my constituency, Newtownards, had to close because it was understaffed, and there are particular reasons for that. People could either follow the advice and go to the nearest South Eastern Trust facility in Downpatrick, some 40 minutes away from Ards—for those who dare to live in Portavogie in the Ards peninsula, not that far from me, it is an hour and 20 minutes—or they could go to the A&E department, which was standing room only. The choice puts massive undue burden on an already drowning service.

I suggest to the Minister—as I have suggested at home; I think it would be helpful—that, whenever GPs commit themselves to operating an out-of-hours service, there may need to be another method of addressing the issues of those who use the service. For instance, why not have a staff nurse to treat minor ailments, taking pressure off the GPs? There are ways of doing things. There does not always have to be a GP there. GPs are predominantly overburdened; they certainly are in my constituency, and I suspect they are everywhere else as well.

I will give the example of my parliamentary aide from just last week, which I believe, unfortunately, is the tip of the iceberg. Her daughter, who has just turned three, is treated in an asthma clinic. She had an extremely high temperature that would not come down to the normal range and which had been going on for nearly two weeks. Her little body fought so hard to control the infection that it was going through that her breathing rate was double what it should have been. The out-of-hours service was rung, and four hours later the call was returned—a long time when the mother and family are getting panicky. The child was lifted out of sleep and brought to a waiting room full of other children who were equally unwell.

Had the service not been able to sound out her lungs, she would have had to travel to the Ulster Hospital, which she ultimately had to do the following week, as her ear infection burst an ear drum. Unfortunately, she is one of many. My aide met doctors who were harassed—not because they were nasty people, but because of their workload—but doing the best they could. When she asked whether there is insufficient funding to pay for out-of-hours care she was told that there is insufficient desire. How do we inspire doctors to be part of the out-of-hours service, which can only function with GPs who want to be part of it?

The new remuneration system came into operation in Northern Ireland in 2003. Although the system was designed to give GP practices much more flexibility on how they deliver services, allowing them to choose how to organise patient care and rewarding them for the quality of that care, the introduction of the new general medical services contract also allowed GPs to opt out of providing out-of-hours services, leaving the system essentially on its knees.

The fact is that the A&E in the Ulster Hospital in Dundonald simply cannot cope without the service. The fact is that nursing homes that rely on GPs coming out to drivers into patients who are in agony and pain, or to call time of death, need the service, as do parents who need someone to sound out the chest of their asthmatic child without being subjected to a four-hour wait in a room with ill, injured and drunk people in the middle of a cold winter’s night.

The service is vital. I read a report in July this year that referred to Wales as having similar circumstances and similar difficulties with their GP service. I am interested to know whether the shadow Minister or the Minister are aware of similar circumstances across the UK mainland. I suspect any MP in touch with their constituents, as we all are, will be able to replicate the stories that I am telling.

I very much respect GPs and the hard work that they do and their right to a social life. No longer do we expect the village doctor to be on call every day and night, but we need them to be available. There are no longer enforceable contracts, and I believe that, in any new NHS reorganisation or strategy, we must find another way of operating the out-of-hours service that gives the care that our constituents want at the times that they need it, which is usually out-of-hours or whenever they are under pressure.

I spoke very recently to a recently retired GP. He had been doing the night shift four nights a week, but realised that that was too much and pulled out. Perhaps if he had been asked to do only one or two nights, he would have stayed. Too much has been asked of too few people. We need to ensure that funding and people are available.

I know he will be mortified, but I am going to name one local GP, because he is a very popular and well liked GP in my constituency. Dr Doyle has his own practice and can be found a lot more than is right, and than is probably his duty, in the out-of-hours surgery. He makes time to help his patients by writing support letters for personal independence payment and employment and support allowance applications and he genuinely cares. I am not saying that others do not care; I am picking out this man as a representative of what happens. I look at Dr Doyle and wonder how much longer he and others like him can possibly continue. We need to spread the burden through the area.

I would urge the Health and Social Care Committee here to look at what is happening with the out-of-hours service, see the good that it does and perhaps look at a different way in which the out-of-hours provision could work. The Select Committee on Northern Ireland Affairs, on which I serve as one of the members from my party, is doing inquiries into many things, and one of them is health. People from Northern Ireland with a knowledge of and interest in health are coming here to make presentations to the Committee. And one thing that crops up is the out-of-hours service.

The question is how we adjust to the demands on the health service for the future. I started my comments by saying how much I genuinely welcome the £20 billion that the Government have set aside. We will get some of that through the Barnett consequential, so we are very pleased, but I see the needs in my constituency among the elderly population. I am also very keen that there should be early diagnosis and that preventive steps should be taken in delivering a health service for the future. If we do that, we will be doing the right thing. We must not just react all the time. Let us have a strategy that looks forward and aims to prevent things happening.

I am a type 2 diabetic, and many in the House are, as it turns out. Our Prime Minister is a type 1 diabetic. We all live with our particular ailments. But how much better would it have been if I had known about my condition earlier. I suspect that I was a diabetic for perhaps a year before I was diagnosed as one. I did not know at the time what the issue was. It was only when I went for a check-up with a doctor that I suddenly realised when he told me what was wrong. That makes me wonder whether there are steps that we can take for education, awareness and prevention. That is what we should be doing.

The Northern Ireland Affairs Committee will come to a conclusion in our inquiry on the health service in Northern Ireland, but I will conclude my speech today with this point for the Minister. The problems that I have referred to are specific in some cases to Northern Ireland and to my constituency in particular, but I believe that problems exist UK-wide and therefore that the response must be UK-wide as well.

[Mike Gapes (in the Chair)]

Order. I think that there will be a vote imminently. If so, we will break for 15 minutes and get back as quickly as possible.

NHS: Staffing Levels

Jim Shannon Excerpts

Tuesday 11th December 2018 Westminster Hall

[Tracy Brabin]

I absolutely agree that training for this most lauded position should not be done at the cost of nurses themselves.

[Jim Shannon (Strangford) (DUP)]

Does the hon. Lady agree that we must have fewer medical quangos and more medical professionals in their white doctors’ coats seeing patients; less cleaning up of paper trails and more cleaning up in wards and A&Es; and funding that is targeted at frontline staffing and reasonable rates of pay?

[Tracy Brabin]

Certainly, funding and support should be given to frontline staffing. I will go on to talk about how I see that playing out.

The Mid Yorkshire trust is a major employer of about 8,000 members of staff who operate across three hospital sites: Pinderfields Hospital, Pontefract Hospital and Dewsbury and District Hospital, which is in my constituency. Like many trusts across the country, the trust is feeling the pressure on recruitment. In the most up-to-date figures, which were given to me directly by the trust this week, there is a 10% vacancy rate. That includes 95 full-time-equivalent posts for medical staff, 209 vacancies for full-time registered nurses, and vacancies for all other posts covered by the trust. The trust tells me that its key workforce challenge remains recruiting registered nurses and junior doctors in training. Those staff shortages lead to expensive cover being required— a bill that is ultimately paid by the taxpayer.

I am pleased that the trust has taken steps to mitigate against staffing shortages, including an extensive recruitment programme where vacancies across the trust are advertised and marketed widely. It has introduced a new associate nurse role in partnership with a local university, and expanded and increased the number of apprenticeship opportunities to offer different routes into careers in the NHS. It has held open theatre days to promote particularly difficult roles to recruit for, such as operating department practitioners. Finally, it has increased the number of nurses and doctors on the local temporary staff bank, which reduces its reliance on, and the cost of, commercial agency staff. I am sure that all hon. Members agree that that is all great.

Despite that work, problems remain. I must put on record my concern that staffing shortages can lead to problems for patients. The ambulatory emergency care unit at Dewsbury and District Hospital opened in 2015 to care for patients who needed a quick diagnosis and treatment, and who could be treated without the need for admission to a hospital bed. Since July, it has been closed because of staff shortages and it will remain closed for the foreseeable future. It had also been closed from the end of December last year to early March. Patients now face the lengthy and expensive trip to Pinderfields Hospital.

In the most recent inspection at Mid Yorks, the results of which were announced last week, the safety of services was deemed to require improvement, which will cause deep concern to my constituents. We are now told that the harsh funding climate for our NHS, which has existed since 2010, is coming to an end—austerity is over.

NHS: Hysteroscopies

Jim Shannon Excerpts

Tuesday 11th December 2018 Westminster Hall

[Lyn Brown (West Ham) (Lab)]

I beg to move,

That this House has considered NHS treatment of patients requiring hysteroscopies.

It is an absolute pleasure to serve under your chairmanship, Mr Howarth. We know that hysteroscopies save lives, but all too often they cause excruciating pain and humiliation because some of the women who need them are not treated with the dignity, respect or even humanity that they deserve.

As hon. Members will know, a hysteroscopy involves the insertion of a camera into the womb, past the cervix, to look for abnormalities and potentially enable a surgeon to remove them. It can be used to rule out a diagnosis of cancer when women are experiencing heavy periods, unexplained bleeding, repeated miscarriages or difficulties in becoming pregnant, and it is a core part of the treatment for debilitating conditions such as fibroids and health risks such as polyps in the womb. However, for some women patients it causes severe pain, a sense of violation and lasting trauma.

The NHS website states:

“A hysteroscopy is not usually carried out under anaesthetic… Taking painkillers such as ibuprofen or paracetamol…can help reduce discomfort after the procedure.”

Unfortunately, many women experience severe pain during hysteroscopy. It is usually done with little or no anaesthetic, and many women are told nothing to prepare them for the agony that awaits. I have passed the Minister many dozens of anonymous cases from women who have experienced terrible pain at the hands of NHS surgeons and were ill-informed or misinformed about the pain risks and offered little or no pain relief. I am glad to say that she has always received those stories with sympathy, empathy and understanding, but I am receiving more and more of them all the time.

This is not an issue that gets huge acclaim or interest in the press. People are finding our campaign and Facebook page simply because they need to. I will put just two experiences on the record today.

[Jim Shannon (Strangford) (DUP)]

As my party’s health spokesperson, I am interested in all health issues, but particularly in this one, so I commend the hon. Lady for securing the debate. The National Institute for Health and Care Excellence guidelines published in March recommend that women should be offered an out-patient hysteroscopy if they have symptoms or risk factors associated with gynaecological conditions. Does she agree that that recommendation has not been translated into GP referrals? More must be done to ensure that those in need of the procedure, for the purpose of early diagnosis or the removal of issues, are referred and treated in an effective manner. It has to be done early, and that is where we fall down.

[Lyn Brown]

I entirely agree, but the importance of early action is sometimes used to encourage or even force women to stay with a procedure that is causing them great pain because of the fear of what might happen afterwards. If the hon. Gentleman gives me a moment, I will illustrate that point.

In October, I heard from Jenny, who has undergone two hysteroscopies, both of which were traumatic. She told me:

“My first experience was shocking. I wasn’t prepared for it. The doctor didn’t warn me at all, and during the procedure I experienced the most unbearable pain ever and I almost fainted. I rose up from the bed that I was on and I shouted out. It felt like my insides were being ripped out. I wasn’t given the option to stop nor was I given any support.

The nurse was behind the doctor throughout the procedure and just watched as I suffered. After the procedure my legs were like jelly. I felt faint and in pain but I wasn’t even helped off the bed, I wasn’t even given a sanitary towel to help with the bleeding. I left the room and drove myself home in that state, I’m lucky I didn’t have an accident. I felt traumatised, in a state of disbelief and shock.”

What is even more shocking is that Jenny’s second hysteroscopy was also traumatising, even though she now knew the risks and had taken steps to ensure that the same thing would not happen again. She explained to her doctor what had happened and requested a female doctor the next time. Her doctor said that she would write that on the referral, and at her pre-hysteroscopy appointment Jenny was told that she could have an injection to numb the area. She was reassured and trusted the female doctor to be more careful, but the procedure was—again—horribly traumatising. Jenny said:

“My god it was shocking, I once again shouted out and raised from the chair this time. The nurse was trying to calm me down…while the doctor said she would stop at any time but she needed to go in again and take a biopsy. I was told that if she didn’t...the procedure would be incomplete and I would be left worrying that it could be cancerous. So I endured more excruciating pain.

I wasn’t given the option to come back and have the procedure done under general anaesthetic, which I have now found out could have been an option. I felt tricked into having the procedure.

I suffered with terrible pain for a week after. Mentally I was left traumatised and still am to this day.”

Understandably, Jenny is now scared about any gynaecological procedure—including smear tests, which she knows are essential for her health.

This autumn, Annie got in touch. Annie had had ultrasounds and smear tests before; like many others, she was given literature about her hysteroscopy that made her think that it would be no different. She was advised just to take paracetamol and ibuprofen before the appointment, and she felt confident. She told me:

“As the procedure began, I felt instant pain, so unexpected and intense that I began to cry and panic within seconds. I was asking the nurse if this was normal as I was so scared there was something wrong, and she nodded to reassure me. I couldn’t get my words out, I was panicking, going into shock. She offered me her hand to squeeze through the pain. I tried to be strong, but I couldn’t, I was yelling out in pain, shaking and crying.

The nurses were telling me to relax my legs but it was impossible. When the Dr began the biopsy it was by far the worst pain I have ever suffered. I was hyperventilating and the nurse was telling me to breathe, but I couldn’t. I endured pain for 15-20 minutes.

I was asked to wait before I stood up, and I was so traumatised and sobbing, I just couldn’t move.

After a couple of minutes I got up and had to put on a sanitary towel and get dressed. It was hard—I was disoriented and shaking.

I sat with the Doctor who told me that due to it being too painful I have to have polyps removed under general anaesthetic. I could barely talk to him due to shock and tears. I wasn’t even offered water, and nobody asked me how I was getting home.

I cried from leaving the hospital at 2 until my wife arrived home at 6, at which point I broke down uncontrollably in her arms. I felt violated and abused, and the procedure felt very very wrong.”

As we know, women are still having these terrible experiences. I received another story in the past two weeks, but I do not have time to share them all. Women are still leaving NHS care feeling violated, and it ain’t going to stop unless we choose to stop it. I am very grateful to the Campaign Against Painful Hysteroscopy for providing support to those women and making sure that they are heard. The campaign group’s petition has received more than 47,000 signatures, which demonstrates that this is not an unusual, occasional thing.

We have four asks. First, if we are to stop patients from being violated or misled, all NHS trusts need to provide accurate information that enables women to give genuinely informed consent. I was pleased to hear from the Minister that her Department is developing tools to improve hysteroscopy care; I look forward to hearing her elaborate on those tools, but involving patients will be essential to making them work. The campaign wants to see a new patient information leaflet made available across the NHS. Campaigners have been working with the Royal College of Obstetricians and Gynaecologists and with specialists to create an appropriate leaflet that patients who have had negative experiences of hysteroscopy have helped to write, but it still needs to be rolled out.

The leaflet needs to be honest with patients. It needs to warn that there is a real risk of severe pain during out-patient hysteroscopy, and explain the risk factors that make pain more likely. They should tell patients that they have the right to ask for the procedure to be stopped at any time and for it to be rescheduled with a full anaesthetic. Hospitals should no longer have any excuse to hand out literature stating there will only be

“mild discomfort, just like a smear”.

After they have read through the leaflet, patients should be given an opportunity to discuss with a trained doctor what is going to happen during the procedure—whether a sample is going to be cut out for a biopsy, the risks involved, and the anaesthetic choices available. The campaign suggests that both patient and doctor should then sign a consent form to confirm the discussion has taken place and the choices the patient has made.

Our second ask is for improved training to enable better and more consistent care. We know that hysteroscopy can be a painless experience for women—some women will experience little pain from hysteroscopy even with minimal anaesthetic—but as we have heard, for others it will be like torture. There are some risk factors—older women and women who have never had children are far more likely to experience severe pain during hysteroscopy—but we cannot tell in advance what someone will experience, and that means we have to improve the guidelines and raise standards through training. The current national guidelines, produced by RCOG and the British Society for Gynaecological Endoscopy, do not recommend several forms of anaesthetic that I am told could be helpful. That has to be looked at, because, for some patients, stronger forms of anaesthetic might be the only way to have a hysteroscopy without experiencing severe pain.

Once we have changed the guidelines, investment in training will be needed to embed new best practice across the NHS. Hysteroscopy nurses should be routinely asking for patients’ pain scores during the procedure, so that informed decisions can be made about whether to continue or to stop. We need to audit pain scores and keep records of how comfortable the surgeon was with continuing, so that we can monitor whether more training is necessary. It should be a basic element of training that hysteroscopy teams should simply stop the procedure if a patient is suffering severe pain—not just hold them down—and reassure the patient that the procedure will be promptly rescheduled with more effective anaesthesia, rather than using the threat of possible undetected cancer to encourage her to continue.

Our third ask is for enough resources to enable all NHS bodies, everywhere in the country, to give women the choice between different anaesthetics when they need a hysteroscopy. The problem is not just flawed guidelines and inadequate training. Trusts may be loth to enable anaesthesia beyond over-the-counter painkillers or local anaesthetic simply because other methods are more expensive. Some are in-patient procedures, and some require clinicians to have specific training, and we all know that that comes with extra costs.

Our fourth, and possibly most important, ask is for a change to NHS incentives for hospitals. According to the information we have, the Department of Health’s quality, innovation, productivity and prevention tariff encourages trusts to promote hysteroscopy without anaesthetic, rather than offering an open choice to women. Annex F to the 2017 to 2019 national tariff payment system is explicit:

“For...diagnostic hysteroscopy...the aim is to shift activity into the outpatient setting.”

The best practice tariff

“is made up of a pair of prices...one applied to outpatient settings, the other to...elective admissions. By paying a higher price for procedures in the outpatient setting, the BPT creates a financial incentive for providers to treat patients there.”

The national target is for the risky out-patient hysteroscopies to increase to 70% of the total, up from 59%. The Department for Health is not working to reduce pain and trauma for women—it is incentivising hysteroscopies without effective pain relief and is taking our choices away. It has to stop, and I hope the Minister will look at how she is going to stop it.

Those are our four asks of the Government, and I think the Minister will agree with me that they are entirely reasonable. I do not believe they would be massively expensive to implement, and we should also consider that current NHS practices may not be cost-effective. Women who have undergone a painful hysteroscopy may not return for other gynaecological tests and procedures. If they do not have those early preventive interventions, more costly interventions will be needed later.

Some action has already been taken. The issue has been raised with the national medical director of NHS England. I thank the Minister for that, and for launching her women’s health taskforce, which I would be interested to hear more about today.

I would like to say something about the history of the hysteroscopy campaign and the amazing women who have led it—I am delighted to see some of them in the Gallery today. With their support, I have regularly been raising this issue in the House for four years now. I cannot say progress has been easy or swift. At times I—we—have been ignored by the Government, despite strong cross-party support every time I have raised the issue. I have been left concerned that officials at the Department of Health, and some senior NHS managers, have not been willing to engage with the problem of women’s pain when the NHS is under financial stress.

However, this last year has been more hopeful. The Minister met me and a core group of campaigners last year, and listened with compassion to their stories. I believe she has taken this cause as her own. I am waiting with bated breath to hear what she is going to say today, and to hear about the rapid and dramatic progress we are going to be able to make on this issue over the coming year.

HIV and World AIDS Day

Jim Shannon Excerpts

Thursday 29th November 2018 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

First, may I thank the hon. Gentleman for bringing his personal story to the House today? I mean that very much. I also wish him continued good health and that he continues to prosper, as he quite clearly is doing.

I mentioned to him before the debate that I wanted to intervene, and I wish to bring to his attention the Elim church in my constituency. The church has an HIV programme in Swaziland, which has the highest levels of HIV in the world. Every year, the children from a choir group come over. Every one of them is HIV-positive, but every one of them is surviving today because of the medication that is available. If the medication is there, we can do lots of things, save lives and give opportunity. Among many churches and individuals around the world, there is a lot of good will to help.

[Lloyd Russell-Moyle]

That is quite right.

We are making progress on treatment, but when it comes to stigma we still have so much further to go. Last week, I was in Kenya with the International Development Committee and met a HIV-positive mother of eight children from the Democratic Republic of the Congo. Although she was on medication, she had suffered such abuse that she was forced to flee the DRC and now lives in a refugee camp. Because of the prejudice and violence that she faced as a result of her status, she was forced to leave without her children, and she knows not of their future.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 27th November 2018 Commons Chamber

[Steve Brine]

The hon. Lady—my shadow Minister—knows that I have a great deal of respect for her. She mentioned smoking; smoking rates in England are at their lowest ever levels. We hear spending commitment after spending commitment from the Labour Government; it is like the arsonist turning up at the scene of a fire. I will take very seriously, as I am sure will the Treasury, her bid towards the spending review discussions, but yes, prevention is better than cure and it will be at the heart of the long-term plan.

[Jim Shannon (Strangford) (DUP)]

4. What steps he is taking to support people to lead healthier lives.

[Robert Neill (Bromley and Chislehurst) (Con)]

17. What steps he is taking to ensure that people take greater personal responsibility for leading healthier lives.

[The Secretary of State for Health and Social Care (Matt Hancock)]

Prevention is indeed better than cure. As well as having a right to expect NHS services to be free at the point of use, we all have responsibility for our own health, and to use the NHS responsibly.

[Jim Shannon]

I recently met Breast Cancer Now—the Secretary of State will be aware of it. It has 10 priorities for the NHS long-term plan. Has he made an assessment of the impact of the real-terms 5% cut in public health budgets on reducing the incidence of cancer?

[Matt Hancock]

There are many things we need to do to diagnose cancer early, and of course public health is part of that, but there is a much bigger agenda, and that includes more screening. We have seen an increase in the number of people invited to screening, but we need to get the screening right, so I have instituted a review of all our screening processes for cancer and other diseases.

Health Services: Witham

Jim Shannon Excerpts

Tuesday 13th November 2018 Commons Chamber

[Priti Patel (Witham) (Con)]

I am grateful for the opportunity to speak about this subject. This is one of many interventions I have made on the health issues that affect my constituency since being elected in 2010. I am sure the Minister will respond appropriately.

Like many other parts of the country, the Witham constituency and mid-Essex are experiencing significant demographic changes, with the proportions of people aged over 60 and over 80 increasing faster than the national average. Those demographic changes, and the population growth that is occurring, place huge new pressures and demands on our services, including our local health economy and the complex network of hospitals, health trusts, councils and providers that support it. One of the most effective ways we can improve our health economy and services is by investing in better primary and community care.

Since being elected, I have campaigned repeatedly for a new multi-purpose health centre in Witham town to address the growing demand in the town and our villages, and to provide more local services to increase the town’s health capacity. Whenever I hold debates on health services in Witham, I highlight the patient to GP ratio. While the national average number of patients per full-time equivalent GP is around 1,700, there are nearly 1,800 in mid-Essex and 1,900 in north-east Essex. However, the overall figure for the four GP surgeries in Witham town is a staggering 2,500, nearly 50% higher than the national average. That number has grown as patient numbers have increased and GP numbers have fallen, and it will worsen as some GPs approach retirement. As a consequence, residents in Witham struggle to get appointments. In fact, in my time as Member of Parliament, some GPs have closed their books and stopped taking on new patients.

Bringing the four GP surgeries in Witham under one roof would add much-needed capacity, integrate health services, grow and strengthen our local health economy, improve access to local services and reduce demand on hospitals. The case is compelling, and the campaign for such a centre is universally supported. Witham Town Council backs it, local politicians from all parties back it, local businesses back it, my residents absolutely back it, and Braintree District Council has backed it from day one. To its credit, the district council has put money aside from a capital receipt to support the development of the new centre. It understands the long-term benefits.

Until recently, it seemed all the plans for the health centre were on track, with GP surgeries in Witham and the clinical commissioning group supportive of it. In fact, the CCG took on a consultant to develop a business case for the centre over the past few years. Shockingly, despite all the lobbying, advocacy and business cases, it appears that either some GP surgeries are rowing back on this opportunity for Witham to join forces to deliver an outstanding health centre for my constituents, or the CCG has not been able to advance the plans.

Only last month, on 15 October, the CCG informed me that it was pleased to say that it had had a “positive response” from three of the GP surgeries. However, just last week, on 2 November, I was notified that during the latest round of discussions their reactions suddenly had been mixed. Douglas Grove surgery is still strongly supportive, but there is less enthusiasm and support from the other practices.

I will touch on many aspects of health, but the purpose of the debate really is to ask the Minister and his Department to go back to the CCG and, where they can, to GPs to ensure that we deliver a new centre for the residents of Witham town and the surrounding area. They want answers, and they deserve action and delivery.

[Jim Shannon (Strangford) (DUP)]

I have always been here to support the right hon. Lady over the years, and I am pleased to be able to do so again tonight. She mentioned action, and I want to refer to that very quickly. Given the pressure that nurses and healthcare professionals are under in every trust area—including my own, by the way—does she agree that the Government must consider a complete overhaul of the way in which things are done in the NHS? We want to see action rather than words. We do not want to see reviews or reports. We want to see action. Is that not what it is all about?

[Priti Patel]

The hon. Gentleman is absolutely right. Ultimately, we should be seeking to drive health outcomes. As I have said in the House again and again over the last eight years, we can achieve that through integration of our health services at a community level. Driving outcomes is the very purpose of the facility in Witham town. We should think about the integration of mental health services, ambulance services and all sorts of prescribing, including social prescribing, and about the future of social care and healthcare.

However, this is not just about Witham town. I represent many neighbouring villages. Tiptree, which is well known for its jams—I am sure that you have sampled some of them, Mr Deputy Speaker—has a large and growing population, but it also has just 3.28 full-time equivalent GPs to serve a population of more than 11,000. That is a patient-GP ratio of 3,400 to one, which is more than twice the national average, and it needs to be addressed. Branch surgeries have been lost in Birch and Tolleshunt D’Arcy in recent years, and there is a growing population in Stanway and Hatfield Peverel. All that places more strain on GPs, so the integration of services is vital. We are hoping to increase the GP base through a new partnership at Anglia Ruskin University, at whose new medical school the first wave of GPs will be trained.

One of those neighbouring villages, Silver End, is expanding provision but has a terrible history. I know that the Minister will be aware of Virgin Care Services, which has run the Silver End general practice since 2016. This year’s rating from the Care Quality Commission was “inadequate”. Members speak about money and funds. Interestingly enough, Virgin is paid £134.37 per patient, 60% more than the standard payment of £83.64 that other GPs receive. That is a staggering sum: it seems that Virgin is almost being rewarded for failure. Just two months ago it failed to refrigerate its flu vaccines, which meant that a batch had to be disposed of. That wasted taxpayers’ money, and also caused local problems with flu vaccinations at a critical time.

I want to touch on some wider issues affecting social care in the Essex County Council area. To its credit, the council has worked diligently to address social and winter pressures. I welcome the additional £5.9 million for the council from the £240 million that was announced last month, and, of course, the Budget funding as well, but, as the county council has said, we want to see a meaningful Green Paper when it comes to social care funding. A new Witham multi-purpose healthcare facility will make a positive difference, enabling us to integrate funds and care and drive better outcomes and performance.

That brings me to another company that is in the news. A CQC judgment on Allied Healthcare highlighted a considerable risk of service disruption to the delivery of domiciliary care services, which has caused much concern. Essex County Council is one of Allied Healthcare’s biggest clients, and has been working with the CQC and the company, but we want to be certain that the Department itself is aware of the situation and able to help to resolve it. We need clarity about some of the services that could be at risk.

There is also much more work to do in relation to social prescribing. Last week I held an advice and information fair in Witham, which focused largely on the older demographic in the constituency, but was also concerned with healthcare provision through charities and other voluntary organisations. Another issue that I think we should consider—and a new healthcare centre at Witham would help with this as well—is how patient commissioning and NHS referral systems can be improved.

My final point is about the delivery of mental health services. The Essex Partnership University NHS Foundation Trust has been in the news today because of a police investigation into the deaths of 25 patients who were under its care. The Department knows of a case involving one of my constituents, a mother who has been fighting for justice and accountability for years. Today we have learned that the police inquiry has concluded. What they have found might not have led to a charge of manslaughter, but there are serious problems that still need to be addressed.

There are so many health issues that obviously need to be addressed, but the purpose of this debate is to drive the change and produce the outcomes we want to see in Witham town in terms of the delivery of the new health centre. I trust that the Minister will be able to help us: that he will be able to help my constituents overcome the challenges we are now facing with the CCG and GPs in Witham town to deliver this new health service.

Healthcare in Essex

Jim Shannon Excerpts

Monday 5th November 2018 Commons Chamber

[Robert Halfon (Harlow) (Con)]

It is a pleasure to see you in the Chair, Madam Deputy Speaker. Thank you for your continued support, as my constituency neighbour, in our campaign for a new healthcare campus in Harlow. You could not have done more to support me, and I am very glad to see you here this evening.

Today, I would like to update the House on the desperate need for a new hospital in Harlow that is fit for the demands of the 21st century. This is now my third debate on the need for a long-term solution to the healthcare crisis in west Essex, and I cannot stress enough the urgency of the situation. The present site, the Princess Alexandra Hospital, serves over 350,000 people and is no longer able to cope under the pressure of an influx of patients. The new healthcare campus, as proposed by the Princess Alexandra Hospital NHS Trust, would encompass accident and emergency services, general practitioner provision, social care, physiotherapy and a new ambulance hub in state-of-the-art, purpose-built facilities.

I thank those Members, some of whom are in the Chamber this evening, who have been so instrumental in the progress of this campaign. In May, they joined me in signing a letter to the former Health Secretary to urge the Government to support the capital funding bid in place for a new hospital. They included my hon. Friends the Members for Broxbourne (Mr Walker) and for Hertford and Stortford (Mr Prisk), my right hon. Friend the Member for Epping Forest (Dame Eleanor Laing), my hon. Friends the Members for Braintree (James Cleverly) and for Saffron Walden (Mrs Badenoch), my right hon. Friend the Member for Witham (Priti Patel), my hon. Friend the Member for Brentwood and Ongar (Alex Burghart) and my hon. Friend the Member for Chelmsford (Vicky Ford), who is present and a big supporter of our new hospital proposal for Harlow.

From this, I have gone on to secure a visit to the Princess Alexandra Hospital from the new Health Secretary, who has heard the case loud and clear, and I look forward to welcoming him to Harlow to discuss the future of our healthcare provision in Essex.

As my hon. Friend the Member for Telford (Lucy Allan)—Telford is also a new town—so accurately put it in my first debate on the subject in October 2017, hospitals

“are the centre of our communities and cement our identity”.—[Official Report, 18 October 2017; Vol. 629, c. 347WH.]

The unwavering support that I have received for a new health campus, both in Parliament and locally, is a testament to its importance, not just to Harlow, but to the wider population of Essex and Hertfordshire.

In March, we received the wonderful news from the Care Quality Commission that the Princess Alexandra Hospital NHS Trust had been brought out of special measures—news on which the former Health Secretary, echoing the sentiments of the Prime Minister, congratulated the hospital in a special video message on Twitter. The chief inspector at the CQC noted that the driving force behind the 18-month turnaround was “the dedicated staff” and “outstanding leadership” team, headed by chief executive Lance McCarthy. I do not believe that enough credit can be given to the staff at the hospital.

I recently visited the Williams day unit, a specialist cancer treatment centre at Princess Alexandra Hospital, for a Macmillan coffee morning. I was struck by the staff’s compassion for their patients and their determination to ensure that, at possibly the most difficult time in a person’s life, the hospital is a happy, welcoming place to come to, to get better and to leave feeling more positive than when they came in.

From my numerous visits to the hospital, in my capacity as an MP and as a patient and visitor, I defy anyone to find better staff than at Princess Alexandra Hospital. In spite of a working environment that is literally falling down around them, thanks to the efforts of every single staff member, from the porters, cleaners and kitchen staff to the nurses, midwives and consultants, 64% of the services are on their way to a “good” or “outstanding” rating.

Special credit must be paid to the maternity unit, which the CQC deemed “outstanding” overall. The team delivers more than 4,200 babies a year, yet their rate of stillbirths is 10% lower than the national average. For those reasons, the maternity department was recently selected to feature in an ongoing documentary with TV personality and presenter of “The Voice”, Emma Willis. I encourage hon. Members to watch that programme on Monday evenings to see for themselves just how dedicated and caring the staff are.

[Jim Shannon (Strangford) (DUP)]

Will the right hon. Gentleman give way?

[Robert Halfon]

I will always give way to the hon. Gentleman.

[Jim Shannon]

I have always supported the right hon. Gentleman’s contributions in the Chamber since we both came to the House together in 2010. He has clearly outlined the case for healthcare in his constituency. The Government have set aside an ambitious £28.5 billion for healthcare. Does he hope to have some of that money for his constituency? Does he also feel that there needs to be a reduction in red tape so that professionals can use their medical expertise to their full ability? This is about the money, but it is also about reducing the red tape.

[Robert Halfon]

I hope that my hon. Friend the Health Minister knows that a new hospital in Harlow is supported not just in Essex and Hertfordshire, but in Northern Ireland. This is the second debate on the subject that the hon. Member for Strangford (Jim Shannon) has attended, and of course I agree with him.

The maternity department serves as the perfect example of how investment can transform patient care under the successful staffing that is already in place, as the labour ward benefits from nine refurbished delivery rooms and a second maternity theatre. However, it also sheds light on the fact that refurbishment is not a fix-all solution. Therefore, does the Minister agree that, were the Princess Alexandra Hospital NHS Trust to receive the capital funding that it so desperately needs to build a state-of-the-art health campus, that would allow every department to flourish, as the maternity ward has already done?

As I have touched upon before, the dilapidation of the estate is hindering any further progress. A 2013 survey rated 56% of the hospital’s estate as unacceptable or below for its quality and physical condition. That was five years ago now and the situation is only deteriorating. With long-term under-investment, we are continuing to put the capability of the hospital to care for those in need at serious risk—just read the reports of raw sewage and rainwater flowing into the operating theatres. Given that time is of the essence, does the Minister recognise the importance of the release of capital funding to the Princess Alexandra Hospital NHS Trust this autumn?

Ovarian Cancer: Diagnosis and Treatment

Jim Shannon Excerpts

Tuesday 30th October 2018 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for North East Derbyshire (Lee Rowley) on securing this debate. He is right that ovarian cancer does not affect us men, but it affects people we know, and that is why we are here. I thank him for his introduction and for the extensive work he has done on the issue in his role as vice chair of the all-party parliamentary group on ovarian cancer. I was particularly impressed by the group’s report, “Diagnosing ovarian cancer sooner: what more can be done?”. If hon. Members have not had a chance to read it, I suggest that they do so, because it is very helpful. It was published earlier this year and contains a number of key recommendations and findings, which I will pick up on today.

Every single year, more than 7,000 women across the United Kingdom receive the devastating news that they have ovarian cancer. The hon. Gentleman, in his examples at the end of his speech, referred to those who have survived and those who have not; it is important to realise that sometimes people do survive it. Unfortunately, in my time as an elected representative, most of the people I have known who have had it have caught it at a late stage and have not lived as long as perhaps they could have. UK survival rates are among the lowest in Europe and less than half of all women diagnosed with ovarian cancer survive five years or longer.

The fact that we are at the lower end of that league table is an indication that perhaps we need to do more. I look to the Minister, as we always do, for a positive response. We also know that the earlier a person is diagnosed, the better chance they have of beating the disease. More than a quarter of women with ovarian cancer are diagnosed through an emergency presentation, for example via accident and emergency. The hon. Gentleman referred to those who thought they had irritable bowel syndrome, had a bad stomach or were bloated, or whatever it might be, and suddenly found it was something much greater. Over 80% of women diagnosed following a GP referral will survive for a year or more. I think if an early diagnosis can be made, the figures speak for themselves. We must do more to raise awareness about the disease, something I will come on to later.

Before I continue, I would like to share a bit of welcome news for ovarian cancer patients in Northern Ireland. As colleagues may be aware, drugs approved by the National Institute for Health and Care Excellence for use through the cancer drugs fund in England are now being considered in line with the country’s existing endorsement of NICE recommendations and will be equally accessible in Northern Ireland. That has just been announced recently. In cases where a drug is yet to be fully approved by NICE, it can be made available for use under the CDF. I will mention one lady who is no longer with us, Una Crudden, who I got to know when she met us here, as someone who had had ovarian cancer. I think it was six years after her diagnosis. She was a remarkable lady and her story was a very real one: I remember it probably every day of my life.

CDF-approved drugs were previously unavailable in Northern Ireland, meaning that patients had to wait for their full approval by NICE, which can take up to two years. This change in Northern Ireland will help more people to survive, and for longer.

[David Simpson (Upper Bann) (DUP)]

Whenever ladies go through this treatment, their aftercare and companionship with other people is important. Will my hon. Friend join me in congratulating a lady in my constituency, Mrs Maureen Clarke, who set up the Angels of Hope charity some years ago? It has been a tremendous help, psychologically and in every other way, for people who suffer from ovarian cancer.

--- Later in debate ---

[Jim Shannon]

I wholeheartedly support the tremendous work of the great many people in charities and elsewhere. Una Crudden was one of those who inspired everyone around her. We think of her often.

Without CDF approval, cancer patients in Northern Ireland have been unable to access life-extending drugs that have been approved for use in England, Wales and Scotland, such as niraparib. It is a PARP inhibitor, meaning that it blocks the action of the enzymes PARP1 and PARP2, which help to repair any damaged DNA in cancer cells while they divide to make new cells. Niraparib blocks PARP enzymes, which is incredibly important, and it is good news that we will have direct access to it in Northern Ireland. When researchers trialled niraparib on women with ovarian cancer, they discovered that the women lived for longer without the disease worsening and could go significantly increased times between treatments, meaning that they had more time between chemotherapy sessions.

Almost 200 women in Northern Ireland are diagnosed with ovarian cancer every year, and more than 50% lose their battle with it. It is particularly frustrating and upsetting for patients, and their families, who did not have access to the same potentially life-changing drugs as their English, Scottish and Welsh counterparts. However, that has changed in the last month; patients in Northern Ireland are finally set to have the same access to drugs as those in the rest of the United Kingdom. According to reports, the implementation of this policy will take place at some point in this financial year. We look forward to that. I am sure that colleagues will join me and my hon. Friend the Member for Upper Bann (David Simpson) in welcoming this fantastic news.

Access to drugs is one thing, but it is reactionary, rather than preventive. Evidence, including in the APPG’s report, suggest that much more needs to be done to raise awareness about ovarian cancer, which could affect the number of people diagnosed with the disease. Early diagnoses give longer life and prevent death. Although not limited to these, the four main symptoms are abdominal pain, bloating, feeling full quickly and needing to pass water. Most concerning is that only 20% of women could correctly identify those as being symptomatic of ovarian cancer, which goes back to a point made by the hon. Member for North East Derbyshire.

Ovarian cancer has low survival rates and, sometimes, delays in diagnosis, so we need a reinvigorated effort to ensure that the general public know what to look out for and when to see a doctor. The Be Clear on Cancer campaign was introduced in 2011, and I take this opportunity to put on the record my thanks to Public Health England for launching it. It is an excellent campaign that has undoubtedly played a vital role in improving cancer awareness more generally among the general population, which is part of the strategy’s focus.

National campaigns have been successfully run for bowel, lung, breast, bladder and kidney cancers, but only regional and local pilot campaigns have been launched for ovarian cancer. Does the Minister intend to launch a pilot campaign for ovarian cancer? A regional campaign launched in 2014 included the use of television, radio, online and face-to-face events and led to a significant improvement in women’s awareness of the symptoms of ovarian cancer and a greater inclination to visit their GP to discuss any concerns that they might have.

Raising awareness—especially about potential symptoms —is obviously important and can only be a good thing, so I will be grateful if the Minister indicates what discussions he has had with Public Health England about the possibility of running a national campaign for ovarian cancer that covers the four nations. We could work together to raise awareness at every level. I always think it is better to do things together. As you know, Mr Bone, we are better together in everything that we do, and I would like that to continue to be the case, especially for this.

Another way to improve awareness about ovarian cancer would be the introduction of a national screening programme. Screening programmes exist for breast and cervical cancer, but there is no equivalent for ovarian cancer. I understand that the UK collaborative trial of ovarian cancer screening looked at the possibility of an ovarian cancer screening programme, with a blood test to identify changes in the levels of the CA 125 protein, which is a tell-tale sign. If levels had risen, the patient would be sent for an ultrasound, so a system would be in place to offer early diagnosis, and it would be preventive as well. It is estimated that, if a national screening programme were rolled out, 12.5 million women over the age of 50 would be eligible to attend, with around 2% required to have a further ultrasound. Such a programme could take preventive help to the next stage.

I understand that, when women are contacted about making an appointment for a cervical or breast cancer screening, they are provided with informative leaflets that detail possible symptoms. Of course, although the screenings are vital, it is entirely up to the patient if they follow up and make an appointment. However, just having access to the leaflets is helpful in raising awareness. Does the Minister intend to produce a leaflet to raise awareness of ovarian cancer? Recognition of the symptoms of ovarian cancer remains low, so it would be helpful if women were provided with a similar leaflet that might help to improve awareness of this specific disease.

I understand that the cost of national screening programmes is high, but that needs to be measured against the long-term benefits. If people can be screened and ovarian cancer caught early, people have a greater chance of survival, and their long-term reliance on the NHS could well be reduced. That is ultimately cost-effective, because it reduces the amount of care that they later need.

I understand that one concern with rolling out a screening programme of that nature is the lack of sonographers, who are of course required to provide ultrasounds. Are the staff with those skills in place? I am interested to hear what consideration has been given to the use of artificial intelligence to fill the gap of highly skilled diagnosticians. Would it be possible to provide some sort of incentive for those considering postgraduate UK ultrasound qualifications? We often say this, and I know that the Minister is responsive to it, but if we set out the graduate positions that will be available in the future and encourage graduates to study towards those jobs, that will be helpful.

Prevention is vital. Approximately 15% of women with ovarian cancer develop it as a result of a mutation in the BRCA1 or BRCA2 gene. Identifying women with ovarian cancer with a BRCA mutation not only helps in designing their treatment plans; it enables family members to be tested. We sometimes look at the individual, which is important, but we should also look at the family circle—sisters and daughters and so on—and test them as well, which would allow them to make decisions about reducing their risk of developing ovarian cancer.

“Achieving world-class cancer outcomes: a strategy for England 2015-2020” calls for all women with ovarian cancer to be offered access to genetic testing at the point of diagnosis. That follows 2013 NICE guidelines that require all women with a 10% or higher risk of carrying a BRCA mutation to be offered genetic testing. However, in reality, testing varies between regions and between hospitals, because the guidelines are often interpreted differently. This clearly needs to be addressed, as the same testing should be available for all, without variation depending on postcode or because of the funding—or lack thereof—available in different genetic testing centres across the country. Obviously if eligible family members were tested to identify potential mutations, they might be able to take steps, including surgery, to ensure that ovarian cancer cannot occur.

Concerns have been raised about what genetic testing could mean for individuals with private health or life insurance. Members may not have thought of this, and the hon. Member for North East Derbyshire did not mention it, but he and others will be aware of it. For example, does a person with private health or life insurance need to declare if a genetic test has been carried out, and its results? I am interested to hear from the Minister what work the Department is doing alongside the insurance industry to address any disparity for cancer patients and their families who undergo genetic testing, which may have an impact on their private health or life insurance.

We can all agree that, while improvements have been made in the last couple of decades, survival rates for ovarian cancer continue to lag behind other cancers. We need to do more to raise awareness of ovarian cancer, to ensure that women know what to look out for and when to see their doctor—particularly those in higher risk categories, either because of family history or because of their age.

I am very pleased about the recent news for cancer patients in Northern Ireland: as is the case with genetic testing, it is unfair for patients to access different treatments, tests or drugs simply because of their postcode. I hope that the Minister will work with Public Health England and NICE to consider national campaigns, which take in all the regions, and screening programmes for ovarian cancer, as well as to ensure that guidelines are implemented and funding made available for testing.

I again thank the hon. Member for North East Derbyshire for the opportunity to speak on this subject. It is close to my heart; indeed, that can be said of all of us who are here and many who are not here because they are doing other things. Ovarian cancer is one of those diseases on which we need to give hope and support to the people affected. We all know people who are affected and we are here today to speak on their behalf.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 23rd October 2018 Commons Chamber

[Mr Speaker]

In calling the hon. Member for Strangford (Jim Shannon) I promise to make no reference to the result of the match last night between Arsenal and Leicester City.

[Jim Shannon (Strangford) (DUP)]

Mr Speaker, you had a broader smile on your face this morning than my friend the hon. Member for Scunthorpe (Nic Dakin) and I. We still support Leicester and hope we will pay you back some day.

An important aspect of diagnosing cancer is to find the drugs that address it. What has been done to ensure the partnerships between universities and the NHS can continue, so that they can find new drugs and therefore address cancers at a very early stage?

[Matt Hancock]

There are deepening relationships between universities and the NHS right across the country, especially in this field of the combination of diagnosis and early treatment. Some of the most advanced technology and research in the world is happening in universities in the UK in order to save lives, which is such an important issue here.

Paediatric Cancers of the Central Nervous System

Jim Shannon Excerpts

Monday 22nd October 2018 Commons Chamber

[Chris Elmore]

I entirely agree with my hon. Friend. I pay tribute to him for the bravery that he and his wife, Rebecca, have shown over William. I am so pleased to see pictures of him now looking so well and on the road to recovery.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing forward such an important issue as an Adjournment debate. We have some three hours to complete the debate, so he has tons of time. About 400 children are diagnosed with a central nervous system tumour in the UK each year, accounting for a quarter of all childhood cancer cases. Like the hon. Gentleman, I salute the doctors, nurses and carers for all the work that they do in looking after these children. Survival rates for other cancers have significantly increased in the past 50 years, but the same cannot be said for brain tumours. Many charities and research groups are working in collaboration to find a cure. Does the hon. Gentleman agree that more needs to be done to raise awareness, find a cure and ensure that parents are fully aware of the key signs and symptoms in babies and young children?

[Chris Elmore]

I agree entirely with the hon. Gentleman. I hope my speech will go some way to highlighting that more work is needed, and to paying tribute to parents and families who have lost children through this horrendous condition.

Cian was first diagnosed with an atypical teratoid/rhabdoid tumour in 2015, when he was four years old. This type of tumour, often called an AT/RT, is a very rare and rapidly growing tumour of the central nervous system. Cian’s primary tumour was found on his spine, with seeds of the cancer also found in his brain. In the majority of cases, AT/RT is associated with a specific genetic mutation, INI1, which can occur spontaneously or be inherited. However, genetic testing in Cian’s instance did not indicate that he had this specific mutation. Cian’s tumour was located on his spine. AT/RTs are generally located anywhere in the brain, but are most commonly found in the cerebellum—the base of the brain—and in the brain stem, which is the part of the brain that controls basic body functions. The fact that Cian’s tumour bucked this trend made a difficult medical situation even more complex. AT/RT was previously thought to have been a type of medulloblastoma. However, it is now known that this is a totally different type of cancer and cannot therefore be treated via the same methods.

Mercifully, childhood cancer is rare in itself. The majority of children who are sadly subjected to this disease are diagnosed with a form of leukaemia. Brain tumours are much more rare, and AT/RTs make up only between 1% and 2% of these cases. I hope this illustrates just how tragic it was that Cian contracted not just cancer, but a cancer of the rarest of forms. This, however, is exactly why we have to do something. We have to do something to remember Cian and ensure that his legacy is that other families may be prevented from suffering a similar fate.