Dr Neil Shastri-Hurst
MP for Solihull West and Shirley · Conservative · United Kingdom
“I am normally a temperate man, but this is a farcical situation. I have huge respect for the Leader of the House, but I suspect that he has come here with gritted teeth, because the reality is that our constituents want to hear from the new Prime Minister.”
“We have seen it in genomics and targeted therapies and we see it in the increasing recognition that treatment must be shaped by the biology of the disease and the needs of the patient. There is no reason that lobular breast cancer should be left behind in that progress. There has been movement—it is right to acknowledge that.”
“One duty of a good health system is to reduce the burden on the patient and prove that they are worth listening to. Susan Michaelis understood that deeply.”
“Compassion reminds us why we keep working. Responsibility requires us to bring those two factors together. The last Government invested in cancer research, including support for the Institute of Cancer Research and the Royal Marsden biomedical research centre, along with wider work relevant to lobular breast cancer.”
“We have heard about how she challenged assumptions, gathered evidence and pursued truth in an area where the consequences mattered for passengers, crews and the wider public. In 2013, she received her devastating diagnosis of invasive lobular breast cancer.”
“We cannot dispute that that is a significant sum, but we have to look at it in the context of national health spending and what cancer costs: the cost to families and patients and the cost to the NHS when it is detected late or treated inadequately. We have to bear those factors in mind.”
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“I am normally a temperate man, but this is a farcical situation. I have huge respect for the Leader of the House, but I suspect that he has come here with gritted teeth, because the reality is that our constituents want to hear from the new Prime Minister. In fact, the Leader of the House has given a compelling reason for Parliament to sit for a further day next week. If the situation in the middle east is as precarious as he suggests, and if there are challenges facing our country, for us to have a Prime Minister who was elected not by the majority of this country but by one constituency, on a mandate that he has not set out, and through a leadership contest that has had no scrutiny whatsoever, is an affront to democracy.”
“It is the second most common type of breast cancer, accounting for around 15% of cases, but despite that it too often remains hidden in plain sight.”
“Remarkably, Susan did not live her final years in retreat from the world; she continued with her work and her research, and continued campaigning. As we have heard, nine days before her death, she travelled to Manchester to help launch the scientific programme for the lobular breast cancer Moon Shot Project, knowing full well that any breakthrough would come too late for her. That is an extraordinary act of generosity and a challenge to all of us in this place. If someone is living with advanced cancer and can spend her final days and the last of her strength ask for progress for others, surely it is our responsibility and Government to find the clarity and urgency to respond. As we have heard, lobular breast cancer is not rare.”
“We have heard about how she challenged assumptions, gathered evidence and pursued truth in an area where the consequences mattered for passengers, crews and the wider public. In 2013, she received her devastating diagnosis of invasive lobular breast cancer. As we have heard today, her symptoms were not dramatic; they presented as just a tiny mark on her breast. Two mammograms and two ultrasounds failed to identify the disease, and it was ultimately identified by an MRI scan. We have heard how that revealed what appeared to be a relatively small lesion of about inch that was later confirmed to be over 7 cm. That single account tells us why this debate continues to matter and shows the particular challenge of a cancer that can be harder to detect through standard imaging.”
“This is not a call for special treatment or a demand that we place one cancer above another; it is a recognition that different cancers behave differently, present differently and may require different approaches if we are serious about improving outcomes. Today, we are also remembering Dr Susan Michaelis. Many people in public life are described as courageous, but in Susan’s case that word feels insufficient. She was, as we have heard, a commercial pilot, a researcher, a campaigner, a wife and a woman whose instinct, when faced with injustice or uncertainty, was not to turn away from it but to investigate it. She had already devoted much of her professional life to public safety, particularly in the aviation sector.”
“It is a pleasure to serve under your chairmanship today, Mrs Hobhouse. I am grateful to the hon. Member for Horsham (John Milne) for securing today’s debate, and to the Members from across the House who have given their voice to this campaign over a number of years. It is entirely right that Parliament should pause today to consider not just the science, the policy and the funding, but the human reality that sits behind all three of those things. Behind the words “lobular breast cancer” are people who knew something was wrong, but the system could not prove it. That is the point at the heart of today’s debate.”
“I hope the Minister will leave this debate having listened carefully, but also prepared to act decisively. The Government should not only meet the campaigners, but set out the remaining barriers, publish a route to a decision and make clear whether they will fund the Moon Shot project. Dr Susan Michaelis spent her life making hidden risks visible; the task before us now is to ensure that lobular breast cancer is hidden no longer.”
“Can they match the scale of the problem with a response that is specific, funded and time-bound? What those affected by lobular breast cancer need is not another expression of admiration for their bravery and courage. They need progress: a system that sees their cancer sooner, treatments shaped by its biology, surveillance that reflects the risk of recurrence and spread, guidance that recognises the particular character of the disease and research funded at a level that gives discovery a fair chance. Susan Michaelis gave the final chapter of her life to this cause. She did so not for herself, but for women she would never meet and families she would never know. That legacy is worthy of more than a mere tribute; it is worthy of action.”
“Compassion reminds us why we keep working. Responsibility requires us to bring those two factors together. The last Government invested in cancer research, including support for the Institute of Cancer Research and the Royal Marsden biomedical research centre, along with wider work relevant to lobular breast cancer. In opposition we have continued to press the Government on the Moon Shot Project, including through the shadow health team and other colleagues. But this should not, as we have discussed, become a party political contest. Cancer does not observe party lines, and neither should our determination to improve the outcomes for patients. The test for the Government is relatively simple. Can they turn sympathy into a plan? Can they gave campaigners a clear route forward?”
“One duty of a good health system is to reduce the burden on the patient and prove that they are worth listening to. Susan Michaelis understood that deeply. As we heard earlier, on 24 June last year, while on oxygen and clearly in pain, she stood outside Downing Street as part of a silent vigil representing the 22 people diagnosed every day with lobular breast cancer in the United Kingdom. She delivered a letter asking for help. Two weeks later she died wearing her Lobular Moon Shot Project T-shirt. That is an image that should stay with all of us today, not because policies should be made on emotion alone—clearly they should not. Policy has to be evidence-based, financially responsible and clinically sound. But should policy not be stripped of a moral seriousness, either. Evidence tells us what may work.”
“That guidance, of course, shapes clinical practice and influences what clinicians look for, what tests are considered and how treatment is approached. If the evidence is not yet strong enough to support separate recommendations, that should strengthen the case for targeted research, not weaken it. We cannot use the absence of evidence as a reason not to gather it. That would be a circular argument. The patients affected by this disease deserve much better. There is also a wider lesson here about women’s health. Too often women’s symptoms have been dismissed as vague, complex or difficult to categorise. Too often women have had to become their own advocates at the very moment when they are frightened, unwell and least able to fight.”
“If the answer is yes, campaigners deserve to know how and through what mechanism that will happen. If the answer is no, they deserve an honest explanation. Is it a financial barrier? Is it a scientific one? Is it procedural? Are the Government waiting for further proposals, reviews or assessments? The people who have campaigned with such dignity on this issue should not be left trying to decode in silence. I also ask the Minister to address the issue of guidance. Lobular breast cancer is referred to only in limited form in existing national breast cancer guidance, and campaigners have called for the National Institute for Health and Care Excellence to review whether the guidance properly reflects the disease.”
“We have seen it in genomics and targeted therapies and we see it in the increasing recognition that treatment must be shaped by the biology of the disease and the needs of the patient. There is no reason that lobular breast cancer should be left behind in that progress. There has been movement—it is right to acknowledge that. The National Institute for Health and Care Research has issued a highlight notice encouraging applications for research into lobular breast cancer; the Government have published their own national cancer plan; and the Health Bill speaks of research duties and innovation. Those are by no means meaningless, but they are not yet enough. That is why today’s debate must focus on delivery, so I ask the Minister whether the Government will set out a timeline to fund the lobular breast cancer Moon Shot Project.”
“We cannot dispute that that is a significant sum, but we have to look at it in the context of national health spending and what cancer costs: the cost to families and patients and the cost to the NHS when it is detected late or treated inadequately. We have to bear those factors in mind. We should also be clear about what research funding means in practice. It does not mean a guarantee of easy answers. Science does not work like that, but it does mean giving our best minds the chance to ask the right questions. It means building the evidence base and moving beyond a generic understanding of breast cancer and towards a more precise understanding of this specific disease. That is the direction of travel that we have seen over a number of years in modern healthcare.”
“The hon. Gentleman is right; there is collective support for doing more on this issue. That starts with getting the research right. Without the research, we do not know how to plan for the treatments of the future. I will move on to the other points, but he is also entirely right that this is not a party-political issue, but one that affects all of us and all of our constituents. We have to work with a sense of urgency around it. As we have heard, the lobular breast cancer Moon Shot Project is looking for £20 million over five years to advance the understanding of invasive lobular breast cancer and to support better detection, treatment and surveillance.”
“Solihull’s Men Walking and Talking group is a huge success. It can lay claim to being if not the most successful one in the country, then certainly among them, and it improves both physical and mental wellbeing. Will the Leader of the House join me in paying tribute to all those who are organising that group and making it a success? Can he set out what more we can do in this place to promote such groups?”
“Therefore, if we want to defend the peace that we so cherish, we cannot have a resilience that starts after the crisis has begun. It is perhaps worth ending by remembering that the cost of preparedness will always be far less than the cost of war itself.”
“It is a different cost depending on the generation, and each has to deal with it in different ways. Our duty is to ensure that this generation pays in preparedness so that the next generation does not pay in blood. The British people will understand that if we level with them, which is why the arguments for spending 3% of GDP on defence in this Parliament are not an extravagant ambition, but the bare minimum response to what is a deteriorating world. Britain is not a weak nation. We possess one of the most extraordinary armed forces in the world; we have outstanding intelligence services, world-class scientists and engineers, and above all, a people who have never failed this country when they have been told the truth.”
“I believe that is the weakness at the heart of the Government’s approach to date. Readiness is not simply about owning equipment. It is about having the people trained to use it, having the stockpiles behind it, and having reservists who are able to mobilise. It is about factories that can surge, ports that can receive and energy systems that can endure. A nation is not ready simply because a Minister declares that it is ready. A nation is ready when the whole system is ready to row in behind it, and the reality is that national security requires choices, discipline and—we have to be blunt—sacrifices. For the past 30 years or so, we enjoyed a peace dividend, and too often we behaved as though that would never end, but we forgot the simple truth that freedom is never free; there is always a cost to be paid.”
“The Chief of the Defence Staff has warned that we are not as ready as we need to be, and the noble Lord Robertson, a distinguished former Secretary-General of NATO, has gone even further; he has been really blunt in his assessment that we are simply not ready. Those are the judgments of people who have spent their entire lives defending our country. We must not treat the British public like children. They do not need comforting slogans; they need searing honesty from people in public office. We cannot set out a case in which we say to them that Russia is probing our waters and hostile states are targeting our energy networks, satellites and cyber-systems, and then suggest that the answer to those dangers is promises that begin in the next decade. Quite simply, we cannot describe a 2030 threat and offer a 2035 solution.”
“Our responsibility is to the British public, and that means telling them the truth. As we have heard repeatedly during the course of today, the truth is that the world has changed and the threats are very real. For far too long, we have risked treating defence as something done by someone else—something done by sailors under the waves, soldiers on distant deployments and pilots in the skies. However, modern deterrence asks us to do much more individually. It also requires government to be honest, and the public to understand what is really at stake. As we have heard, the Government have clearly set out that Russia could be in a position to attack a NATO ally by as early as the end of this decade.”
“I refer Members to my entries in the Register of Members’ Financial Interests, in particular my participation in a parliamentary delegation to Ukraine in February with the UK friends of the armed forces. [ Official Report , 14 July 2026; Vol. 789, c. 12WC.] (Correction) I want to build on some of the arguments made by the hon. Member for Dunfermline and Dollar (Graeme Downie). As I sat here listening to this thoughtful and valuable debate, the issue that really struck me above anything else was that, in many ways, we are preaching to the converted in this Chamber. Those of us who are here recognise the seriousness of the moment—we understand that defence is not an optional extra and that it cannot wait for a more convenient fiscal moment—but our responsibility goes much further than this Chamber, of course.”
“I have a great deal of respect for the Minister, and he has adopted the tone of the House, which is united on tackling this issue; but there is clearly a lacuna in the law as it stands. It will take time, however fast the Government work, to get that change on the statute books. In the interim, is the Minister prepared to use sanctions against Pakistan to ensure the deportation of this grievous individual?”
“In response to the DIP, the noble Lord Hutton, a former Labour Defence Secretary, said that “the centres of resistance across Whitehall to extra defence spending have been allowed to prosper and they haven’t been overcome.” He went on to say that, as a consequence, our armed forces will not be war-ready by the end of this Parliament. Does the Defence Secretary disagree with the noble Lord? How do the £10.7 billion in cuts to the MOD budget enhance our armed forces’ readiness?”
“There are now over 1 million young people not in education, employment or training, which is the highest number in more than a decade. When the history books are written on this period of Government, does the Secretary of State agree that the story will be of a lost generation?”
“Space has a crucial role to play in our national resilience. Responsibility for it cuts across Government Departments. With that in mind, and given the Cabinet Office’s role in cross-Government co-ordination, can the Minister confirm when the National Space Council will next convene?”
“T2. Indeed—I am back by popular demand.Will the Minister set out what steps the Cabinet Office is taking to ensure that public appointments are made on merit alone and not based on political patronage or ideological principles?”
“This brutal conflict has resulted in more than 14 million people being displaced. Around 5 million of those have been displaced over the border, but 9 million are displaced in Sudan itself. Will the Minister set out what practical steps the Government are taking to support those who are displaced internally?”
“There will be different views on the evidence, on treatment and on guidance, but there should be no difference between us on the need for children to be seen, for families to be heard, for clinicians to be supported, and for care to be based on evidence, rather than the accident of geography. For families living with PANS/PANDAS, progress will be measured by whether the next family gets an earlier answer, whether the next child is believed sooner, whether the next GP has somewhere to turn, and whether the next school understands. That is a fair and compassionate standard, and it is the one that the Government should now meet.”
“With that in mind, I would appreciate the Minister setting out how the Government intend to support that work and encourage greater patient involvement. There is also a need for greater consistency across local systems. If support is left entirely to local discretion, care will depend on where a family lives or how hard they are able to fight for it. Clearer information on how suspected cases can be supported across specialties should be available to ICBs, and schools also have to be part of the answer. For many families, school is where the change is first noticed; better awareness of sudden onset and fluctuating symptoms could help ensure sensible attendance policies and flexible, rapid and responsive classroom adjustments. This debate should not be one that divides the House, but one that unites it.”
“Will she commit to a clear process for assessing emerging evidence? We also need to take action on professional awareness. I recall reading about these conditions in Kumar & Clark when I was a medical student, but I do not recall receiving any formal training on them. It is not enough to ask our clinicians to be responsible for keeping their knowledge up to date; atypical, complex and contested conditions require practical support. As such, I ask the Minister to consider an awareness package for frontline professionals, developed in conjunction with clinicians, families and experts. We also need action on data and research—we need better data, diagnostic clarity, and research into treatment and long-term outcomes.”
“Families do not experience this as a framework, action plan or written answer; they experience it as the moment when a child refuses food, compulsions appear, school attendance collapses or a parent is told that a professional has never heard of the condition. If the problem is complexity, inconsistency and a lack of recognition, the solution must be equal in its seriousness. The foundations have been set, and now we must all go further. We need action on guidance. The clinical guidance being developed by PANS PANDAS UK and the PANS guideline development group brings together expertise from general practice, paediatrics, neurology, immunology, infectious diseases, psychiatry, psychology and nursing. I would be grateful if the Minister could set out how the Government will engage with that guidance once it is published.”
“The previous Government did not solve this issue, but foundations were laid through the UK rare diseases framework, annual action plans and engagement with research, including with the APPG and the working group. The current Government have welcomed clinical guidance being developed by PANS PANDAS UK and have said that NICE will consider national guidance as evidence improves. They have also pointed to NIHR research and extended the rare diseases framework into 2027. Where the Government do the right thing, we should welcome it, but the question is whether those actions are sufficient. Do they need to go faster? Are they reaching the families on the ground?”
“The NHS is still too often structured around separate silos, whether it is mental health, neurology, infectious disease, immunology or paediatrics, but children living with these conditions do not arrive in neat administrative categories; their needs are complex, sudden and overlapping. That makes it hard for families to know where to turn, as well as for clinicians who want to help but may not have had the training to do so, and for schools that see a child’s behaviour change dramatically without understanding what is driving it. We must also be candid about the emotional difficulty. Parents can feel dismissed. They can feel treated as difficult or seen as overanxious when they are simply trying to explain what has happened to their child. No child should be left waiting for help because the system is unsure about where they fit.”
“The Government have said that data on the number of children affected is not currently collected, because internationally the criteria cannot be agreed. Local integrated care systems are expected to plan services, but they are asked to do so without consistent national direction, which risks variation. As we have heard, in reality variation leads to a postcode lottery. It means that one family may find an informed GP, paediatrician or neurologist, while another family is left scrambling for help. It means that one school may understand the sudden onset and fluctuating need, while another school sees only challenging behaviour. It means that one parent may feel believed, while another parent feels blamed. That is the difficulty at the heart of this debate. PANS/PANDAS cut across the way our systems are organised.”
“The problem is not that every scientific question has been answered, because clearly it has not. There is uncertainty and professional disagreement, and there is a need for stronger evidence, better data and more research into diagnosis, treatment and long-term outcomes. However, uncertainty has too often translated into inconsistency. It has meant too many families left without a clear answer, too many clinicians left without guidance, too many schools unsure of how to respond and too many children caught between services. Each see part of the picture, but they do not see the child as a whole. At present, there is no official NHS clinical guidance for the diagnosis and treatment of PANS/PANDAS. NICE has previously concluded that the evidence was insufficient to provide useful guidance.”
“They include obsessive-compulsive behaviours, restricted eating, tics, anxiety, behavioural change, sleep disturbance, regression, movement difficulties, school refusal and distress that can overwhelm the entire family. For some families, the story is stark. A child who was settled and sociable becomes frightened, withdrawn and unable to eat. A child who was thriving at school begins to struggle. Families find themselves moving from GPs to child and adolescent mental health services, from paediatrics to emergency departments, and from school meetings to safeguarding conversations, often without a clear pathway or a clinician who is able to say, “Do you know what? I recognise this, and this is what we need to do next.” The first task before us is to diagnose the problem honestly.”
“For them, this is not an abstract discussion about guidance, systems or clinical pathways; it is about the child they love, the moment something changed and the exhaustion of trying to explain that change to people who may never have heard of the condition before. It is about parents who overnight become advocates, researchers, case managers and campaigners, while simultaneously trying to hold their families together, and about the children and young people whose lives can be altered suddenly and terrifyingly. As we have heard, PANS/PANDAS sit at the intersection of neurology, psychiatry, immunology and infectious diseases. That matters because they do not fit neatly into one service, specialty, clinic or budget line. For the children affected, symptoms can be sudden and severe.”
“He talked about the excellent campaigning by Albie, who is in the Gallery today, following his brother’s diagnosis—I suspect Albie’s handwriting is somewhat better than my doctor’s scrawl and I commend him on his campaigning. The hon. Member for Harlow (Chris Vince), who is always keen to speak up and champion issues on behalf of his constituents, spoke about the importance of guidance. My right hon. Friend the Member for New Forest East (Sir Julian Lewis) talked about the importance of the early use of antibiotics. Above all, I want to speak directly to the families and children who are following the debate and who live with PANS/PANDAS every day, some of whom are with us in the Gallery today.”
“It is a privilege to respond to the debate on behalf of His Majesty’s loyal Opposition. I pay tribute to the hon. Member for North East Fife (Wendy Chamberlain) for securing the debate and for setting out the landscape facing those with PANS/PANDAS in the UK, as well as recognising the lack of knowledge about the conditions and the challenge that presents. I thank her for her sustained work through the APPG on the issue. Many right hon. and hon. Members have contributed to the debate. The hon. Member for Carlisle (Ms Minns) spoke movingly about Joanne and Jake, who have been living with PANS/PANDAS for the past six years, and the challenges of not getting the treatment or the funding that they need. The hon. Member for Henley and Thame (Freddie van Mierlo) made a good point about how those affected do not want sympathy but action.”
“A soldier deployed on operations is not situated in the same circumstances as a civilian living in peacetime; the realities of combat are fundamentally different. Those of us who have had the privilege to spend time with serving personnel quickly come to appreciate that military operations are conducted in conditions of danger, ambiguity and enormous pressure. Decisions are often made in moments, not months. Commanders and soldiers do not enjoy the luxury of hindsight that is available to lawyers examining events years later from the cold comfort of a courtroom.”
“New clause 4 is not a radical proposition; it is a relatively modest measure that simply recognises commitment and rewards service. Crucially, it sends a clear signal that Parliament values not only those who wear the uniform but the families who stand behind them. Over the past two decades, there has been a considerable concern about the extent to which human rights litigation has affected military operations overseas. Parliament has recognised those concerns in previous legislation relating to overseas operations. That issue is not a novel one, but part of a continuing debate about how best to reconcile operational effectiveness, accountability and fairness. The argument for new clauses 9 and 11 is, at its heart, a simple one.”
“They have worn our uniform, accepted unlimited liability in defence of our national interests, and contributed directly to our security. In those circumstances it cannot be right, having honoured their commitment to our country, that we appear reluctant to honour our commitment to them. The armed forces covenant, as my right hon. and gallant Friend the Member for Rayleigh and Wickford (Mr Francois) mentioned, rests on the principle that those who serve should suffer no disadvantage as a result of that service. It is difficult to reconcile that principle with a situation in which a family that has supported a service member throughout years of deployments and postings, is then confronted with substantial costs in order to remain together in the country for which that service was given.”
“When we speak of supporting the armed forces, we cannot confine our attention solely to those in uniform; we must also consider the spouses and children who support them. New clause 4, tabled by my hon. and gallant Friend the Member for Huntingdon (Ben Obese-Jecty), addresses a concern that many Members across this House have heard repeatedly from serving personnel and veterans alike: that the financial burden imposed on families seeking indefinite leave to remain after years of loyal service to this country is too much. There is a straightforward question before us. If an individual has given years of service to our nation, why should their family then face significant financial barriers simply to secure their future here?”
“It therefore follows that the first duty of Parliament towards those who discharge that responsibility is to ensure that they are treated with fairness, dignity and respect. That means understanding that military service is not simply another profession, but a vocation that places demands on individuals and their families that most of our fellow citizens will never be asked to bear. I begin with new clause 4. I have long believed that when an individual commits to service in the armed forces, the nation enters a contract with them that carries practical consequences. We ask our service personnel to accept postings away from home, to move their families at short notice, to spend long periods separated from loved ones, and, in some cases, to place themselves in danger on our behalf.”
“I place on record that, as a veteran myself, it was a huge privilege to serve on the Select Committee that considered this important legislation. I will concentrate my remarks on new clauses 4, 9 and 11. At first glance, they may appear to concern different matters, yet, in reality, they are united by the common principle that Parliament should ensure that those who serve this country are treated fairly, and that the law recognises the unique obligations we place on them. We quite rightly celebrate the professionalism of our armed forces. We ask them to defend our interests overseas, deter our adversaries, and, when necessary, place themselves between danger and the rest of us. It is right that the first duty of any Government is the defence of our realm.”
“The Minister is right to point to the uncertainty that businesses are facing, and my constituents and local businesses repeat that message to me regularly. The Minister has indicated that there may be a chance that some of the tariffs or the categorisations will be changed. Will he undertake to come to the House and make a statement as soon as that is announced?”
“It is a pleasure to serve under your chairmanship this evening, Mrs Barker. I am grateful to the hon. Member for Colne Valley (Paul Davies) for opening this important debate, and to other right hon. and hon. Members for their contributions to it. I also pay tribute to Brain Cancer Justice and to all the people—over 109,000 in total—who signed this petition to ensure that we have had the opportunity to debate this important issue here today. At its heart, this debate has been about the patients, families and loved ones whose lives have been irreparably changed by a brain tumour diagnosis. For many families, of course, that diagnosis arrives suddenly, although too often it is also delayed.”
“Behind every statistic is a person and behind every policy discussion is a family desperately hoping for more time. Today, I want to particularly recognise the courage of those families whose stories have been shared, often while living through the most unimaginable grief, so that others might one day have a better chance. I also want to pay tribute to the remarkable charities, researchers, clinicians and campaigners who have worked tirelessly to keep this issue on the national agenda: organisations such as the Brain Tumour Charity, Tessa Jowell Brain Cancer Mission, Brain Tumour Research, Cancer Research UK and countless others that have not only supported patients and families, but have driven forward research, awareness and innovation.”
“I am very grateful to my hon. Friend for sharing Holly’s story, which sadly, is far too frequent. I remember from my time in clinical practice that those subtle signs were sadly sometimes missed. We need to do much more to ensure that our clinicians are aware of them so that they can make an early diagnosis. Of course, when those diagnoses arrive, it is inevitably devastating. It turns lives upside down in an instant. Parents are told that their child has a condition with few treatment options, husbands and wives are forced to confront an uncertain future and children become carers. Families who should be planning birthdays, holidays and life milestones instead find themselves navigating endless hospital corridors, scans and treatments.”