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But alongside that, he had carefully analysed and understood what had changed in the country since 1979, and therefore which elements of Thatcherism should be maintained and built on. He kept the trade-union reforms, the privatised industries, the low rates of income tax, the commitment to NATO, a largely pro-American foreign policy and a strong defence. These were natural Conservative policies, and by adopting them, Blair locked us out of Downing Street.
What were the equivalent moves for us? This was the question that Conservative Party ‘modernisers’ kept asking. Getting the answer right was an essential step in returning to power. And returning to power was what we needed to do. Despite his prowess at politics, and those reforms that had benefited Britain, Blair was, overall, taking the country in the wrong direction. It was more than just his policies – the unsustainable welfare system, the dumbing down of education standards, the neglect of some key overseas alliances, the increases in taxes, the overburdening of public finances and the failure to plan for the long-term future of everything from defence to the NHS. It was also about the culture those policies created. Something for nothing. Equality of outcome, not opportunity. Short-termism. I was absolutely not the heir to Blair in any policy or philosophical sense, and I was desperate to clear his government out.
But before I could do that I needed to find a safe parliamentary constituency. By the middle of 2000 I was heading towards the final selection rounds in Epsom, East Devon and Shaun Woodward’s seat of Witney. It was Witney that I really wanted.
I knew Shaun from working with him at Conservative Central Office during the 1992 general election. I was well aware that he was wildly ambitious for high office, but I was just as surprised as everybody else when he chose to jump ship and join the Labour Party in December 1999. Surprise soon gave way to excitement: West Oxfordshire was an area I knew quite well, and the constituency would now need a new Conservative candidate for the next election. The town itself was just thirty miles north of where I was brought up, and West Oxfordshire was very similar to West Berkshire – a combination of market towns, attractive villages, rural enterprises, growing businesses and many talented people who commuted either to the university city of Oxford or to London.
The constituency party had concluded, unsurprisingly, that they’d made a dreadful mistake in selecting Shaun Woodward, who had turned out not to be the genuine article. So in an attempt to avoid making the same sort of mistake again, they employed an interesting ruse for the first round of interviews. The mayor of Carterton – the second town of West Oxfordshire after Witney – was a West Indian called Joe Walcott. He had come over from Jamaica during the war to serve in the RAF at Brize Norton, and had stayed on to become a prominent local figure and a passionate Conservative. As the prospective candidates arrived one by one to be interviewed at a pretty manor house in the village of Bampton, they found Joe standing on his own in the garden. Those who ignored him, or assumed he was a gardener or driver, were immediately struck off the list. Fortunately I gave him a warm handshake, and we would remain good friends until he died in November 2018.
Although I was competing against the former MP and highly effective minister Andrew Mitchell, and a talented young businesswoman called Sharon Buckle, I think my passion for the place shone through, and I was selected.
Within weeks I had new friends, a new home and the makings of a strong political base. Peter Gummer, Lord Chadlington, who I knew a little from when we had both worked for John Major, became something of a mentor, renting me a cottage in Dean, near Chipping Norton, the village where we have lived ever since. Together with Christopher Shale, who also became a firm friend and adviser, Peter helped me to rebuild the local Conservative association and its finances.
And I inherited from Shaun Woodward one of the best constituency agents in the country, Barry Norton, who was also the leader of the local district council. Witney born and bred, Barry is a workaholic with a thick Oxfordshire accent, and seemed to know about absolutely everything that happened anywhere in the 250 square miles of the Witney constituency.
While it is hard to characterise a whole local party, the West Oxfordshire Conservative Association, or WOCA as I came to know it, was, rather like its last two MPs, Shaun Woodward and Douglas Hurd, at the liberal, open-minded end of the party.
The general election, which took place in June 2001, was a fairly gentle affair. I spent the campaign travelling from village to village, having lunch in any number of extremely good West Oxfordshire pubs. It was a fun month, and at the end of it I had a majority of over 7,900. I was in.
In the run-up to the election, and for some time afterwards, when people asked me about my ambitions I would say that I wanted to be a Member of Parliament because I believed it was an incredibly satisfying and worthwhile job. Serving the area, standing up for local people, getting things done, while taking part in debates about some of the big questions facing our country: that was what it was all about. Everything else beyond being a backbench MP – and I always hoped there would be more – would be a bonus.
There was soon the added stimulation and interest of sitting on the Home Affairs Select Committee. I was keen to take risks, and I fully supported the proposal that we look in depth at the issue of illegal drugs. I was later to disavow some of the most contentious conclusions we came to – downgrading ecstasy from class A to class B, for instance. It was, and remains, odd that ecstasy is in the same class as, for example, heroin. But I came to believe that the danger of signalling that certain drugs were more acceptable, or less dangerous, outweighed any benefit from being more scientifically accurate. But there is no doubt this report shifted the dial in terms of moving drugs policy away from criminalisation and towards treatment and education. This was something I would continue to promote as prime minister.
But while I loved the job, my joy at being a Member of Parliament was tempered by the hopelessness of our situation as a party. 1997 was the year of the Tory wipeout, and in 2001 we added precisely one to our historic low of 165 MPs. The Conservative parliamentary party looked very white, very rural, very male, and frankly rather irrelevant. Of the thirty-four new Tory MPs who had made it to Westminster, only one was a woman.
And during that Parliament a whole series of things happened that brought home to me just how wretched our situation was, and how simply waiting for something to happen was a useless strategy.
William Hague’s resignation as leader after the 2001 election was sad, but not surprising. He had done his best in almost impossible circumstances. Throughout his leadership the Conservative Party had been divided and fractious, and was still trying, though often failing, to come to terms with defeat. Blair was always likely to be given a second chance by the electorate. But through the force of his performances, both inside and outside Parliament, William had kept the party together and the show on the road.
Because he changed tack partway through the Parliament, backing off from modernisation and returning to more traditional Tory themes such as law and order and Europe, it is easy to represent his leadership as a false start for the modernisation of the party and its policies. I don’t think that’s fair.
Timing is everything in politics. William did not have the support in the party for modernisation, and given that Blair was then at his peak, even a changed Conservative Party couldn’t expect much reward from the electorate. Pressing on might have sacrificed core support without attracting new voters.
In any event, I can’t claim any particular foresight: I backed him strongly in both phases. And the pressure on him was spectacular. William said to me some years later, when I was trying – successfully – to tempt him back into front-line politics, that the experience of leading the party after 1997 had nearly broken him.
In the leadership election of 2001 I was a committed supporter of Michael Portillo. I had seen how good he was in office, and the unexpected loss of his seat in 1997 had clearly made him think deeply about what needed to change. Re-elected to Parliament in a by-election in 1999, it seemed that he had a clear plan for change, and for a more liberal party with greater urban support. However, he had so fallen out of love with his own party that he couldn’t really contemplate the hard work and compromises needed to reform it. Also, with his hard-man-of-the-right past, he struggled to convince all those who supported the modernising agenda.
And so we were left with Ken Clarke versus Iain Duncan Smith. It was a hopeless situation. One couldn’t unite the party; the other couldn’t win over the country.
I made what I thought was a rational choice, which was to support ‘IDS’, because I thought that if Ken won, the subsequent inevitable party split over Europe would be so bad as to make us both a laughing stock and wide open to a revolt from our right. Samantha said I was mad, and voted for Ken. Frankly, I was pretty happy that we cancelled each other out.
My only memory of the entire leadership campaign was of an event I organised in Witney for party supporters to hear John Bercow speaking for IDS and George Young speaking for Ken. Samantha asked Bercow whether he supported his candidate’s views that abortion should be restricted and the death penalty restored. It was one of the many moments in our married life when I realised that she had seen the big picture rather quicker and clearer than I had. IDS was always going to be seen as an outdated old clunker.
But two days before he won the leadership contest on 13 September 2001, the world changed.
When the first plane struck the World Trade Center I was at home in Dean doing constituency work. Samantha was in New York starting the process of setting up a new Smythson store in Manhattan. For about four hours I was unable to get in touch with her because the telephone lines were down. I sat with the TV remote control in one hand and my mobile phone in the other, watching in shock and pressing redial over and over again. By the time I got through to her that evening I was staring out of the window on the train to London. Relief.
People now tend to jump straight from 9/11 to the war in Iraq, but that is unfair. Tony Blair’s initial response to what had happened that day in New York was masterful. He moved fast, and set the agenda both at home and abroad. He correctly identified the problem of Islamist extremism, the inadequacy of our response both domestically and internationally, and supported – quite rightly in my view – the action to remove the Taliban regime from Afghanistan. Once it was clear that they would not stop al-Qaeda using the country as a safe haven, there was no realistic alternative.
Along with other relevant select committee members, I went to No. 10 for a briefing in late 2001. It was the first time I had been through the famous black door in years, and Blair impressed me then and in the many debates and statements that followed. Even as a relatively tribal Conservative, I felt strongly that at this moment Britain had the right prime minister. I even stopped Blair behind the speaker’s chair after one statement in the Commons to say that in his clarity about the threat we faced, he was speaking for the whole country.
But what of Iraq? While anyone with an ounce of reason could see that the regime in Afghanistan was a legitimate target, it was impossible to be quite as certain when it came to Iraq. As I showed in the anguished Guardian columns I wrote at the time – I had a regular spot in the paper’s online comment pages – I was a sceptic about the move to war.
Saddam Hussein’s regime was brutal. He was in breach of countless resolutions passed by the UN, an organisation for which he showed only contempt. His people would unquestionably be better off without him. There was a risk that, left in place, he might start to work more closely with the extremist groups that threatened us. And, after all, he had employed ‘weapons of mass destruction’ against his own people when he used poison gas on the Kurds.
I bought all of these arguments, and still do, but as I put it at the time: ‘We are being asked to swap deterrence with something new called pre-emptive war. I cannot be certain but I suspect that many of us will not support pre-emptive war unless Blair can produce either compelling evidence of the direct threat to the UK or a UN resolution giving it specific backing.’
As the evidence to satisfy the first condition was pretty unconvincing even at the time, and as Blair clearly failed on the second condition, why did a sceptic like me vote for military action?
The convenient answer would be to say I was ‘duped’ by the various dossiers and the claims about Britain being ‘forty-five minutes from doom’. But that’s not really the case. They only formed a small part of the reasons I gave publicly and to my many highly sceptical constituents.
I wrote at the time about the consequences of backing away. It would undermine the UK–US alliance. Saddam would win an invaluable propaganda victory. We would jeopardise any chance of a proper, multilateral approach. And, of course, while there was no ‘second resolution’ specifically mandating force, there were over a dozen resolutions dealing with Iraq, and the UN would look powerless if they weren’t enforced.
Sitting in the Commons, it was also clear that a vote against military action wouldn’t stop the war, it would just make it less of an international coalition. The Bush administration was going to have this war, the question was whether we would be involved.
And I listened to my closest colleagues and friends. Some, like George Osborne, who was a fairly enthusiastic ‘neo-con’, had no doubts. Others, like Oliver Letwin, who were wavering sceptics like me, decided on the balance of evidence to vote with Blair.
Samantha was totally opposed, and told me to stick with my initial scepticism. But this was a time in our marriage when we talked about politics very little.
Our first-born son Ivan was a year old, desperately ill and in hospital almost as much as he was at home. I would often leave his bedside in the morning after a night sleeping beside him, handing over to Samantha before heading off to the Commons for the next Iraq debate or statement. Less parenting by relay, and more time together, and she might have persuaded me.
But to be truthful, there was something else. I believed that the prime minister was entitled to something approaching the benefit of the doubt. I was all for Parliament voting on going to war – and I would subsequently help to entrench that convention as prime minister – but I don’t start from the proposition that a prime minister asks for backing for a military conflict ‘lightly or inadvisedly’. Indeed, I believe that if the prime minister comes to Parliament and says effectively, ‘We are standing with our oldest allies, fighting a dictator who has brutalised his people, and we risk humiliation or worse if we falter,’ then I would try to be supportive.
Assuming that other MPs shared this rational patriotism, or naïvety – take your pick – was to let me down several years later, in the vote on bombing Syria when I was prime minister. I regret what happened subsequently, and we will never know how things might have been if matters had been handled differently. But I take the view that if you vote for something, you should take your share of responsibility for the consequences rather than try to find some formulation to show that you were conned or misled. Without Saddam, Iraq at least has a chance of a better future; although even today it is probably still too soon to say whether that chance will be taken.
It wouldn’t be fair to write off Iain’s entire period leading the party. He understood that the Conservative Party needed fundamental change. But he wasn’t capable of some of the basic requirements of leadership in British politics – building an effective team, performing at Prime Minister’s Questions, and delivering big speeches and media interviews.
For PMQs, George Osborne and I were drafted in, together with a bright young staffer, James Cartlidge (now the MP for South Suffolk). From time to time we were joined by Boris Johnson, whose appearances grew less frequent the more obvious it became that we were marooned in the polls and heading for defeat.
They were pretty desperate sessions. Blair was at the height of his powers, and Iain was leaden and dull. Boris asked me after one particularly depressing prep session, ‘Hey Dave, what’s the plan?’ He then grabbed me by the shoulders and said, ‘Presumably it’s like carrying an injured hooker in the scrum – we know he can’t play but we just’ – at this point he grunted and heaved me off the ground – ‘pick him up and carry him over the line.’
George and Boris saw the writing on the wall much more clearly than I did. I didn’t attend either of the IDS party conferences, as on both occasions I had to be at Ivan’s bedside at St Mary’s Hospital, Paddington. Despite this, I did catch his second conference speech – the one where he declared that ‘the quiet man’ was ‘turning up the volume’. I watched it on an ancient hospital television, but even I could see that the multiple standing ovations were staged and looked ridiculous.
In the end, this right-winger with the potential to unite the party was overthrown by a combination of left and right after losing a fight he didn’t need to pick. A government Bill on adoption and children was amended to enable unmarried couples to adopt children, opening the door for gay couples to adopt. It had already passed the House of Commons, but the Lords had rejected the amendment and reinstated the original ‘married-only’ rule.
Iain tried to whip the party against supporting unmarried couples’ right to adopt. A small number of MPs rebelled completely and voted with the government. A larger number ignored the three-line whip – so-called because the whips underline the vote three times on the official notice, meaning that you must support the party line – and abstained. There were only three of us from the 2001 intake who did so: me, George and Boris.
Instead of ignoring the rebellion – as I frequently chose to do as party leader – Iain’s lieutenants called an emergency press conference, telling the party to ‘Unite or die.’ IDS’s personal authority was left mortally wounded, with more or less open discussion of plots to oust him. Only the Iraq War, which soon dominated the political discourse, diverted press and political attention from the travails of the Tory leadership.
But by October 2003 the party had had enough. A major donor announced on the radio that he and others were considering abandoning ship if IDS’s leadership continued. Given the party’s precarious financial situation, this new crisis stampeded the parliamentary party into action. Shortly afterwards a vote of confidence in Iain’s leadership was triggered as the chairman of the 1922 Committee received the sufficient number of letters from Conservative MPs.
The day of the vote was also the day of PMQs. For once Boris turned up at our weekly prep meeting, and there was lots of gallows humour, including from Iain, about potential leadership bids. Afterwards, I asked to stay behind for a private word. I pleaded with Iain to resign, and not face the indignity of losing a vote of confidence. George was probably right, though, when he said the deed simply needed to be done.
The arrival of Michael Howard as leader provided yet more lessons in leading, and in losing. Michael handled the technical aspects of the job well. After two years of IDS, there was a sense that the grown-ups and the professionals were back in charge. PMQs was a fight once again. Conferences were well organised. There was a newly effective media operation.
Overall the Michael Howard leadership gave us a fighting chance. The critique of Blair was sharpened: over-regulation was holding back the economy, and over-centralisation was holding back public services. And the government was ignoring vital issues such as crime and immigration, on which Michael Howard could demonstrate both passion and expertise. And yet. Once again it didn’t work.
Did I ever believe that we could win in 2005? While I thought we could take away Labour’s majority, I was never confident that we could win outright. We simply hadn’t won the right to be heard. Nor had we developed a clear enough description of what we needed to do.
Perhaps the biggest lesson of this whole period is something that is both hard to measure, and unfair. People make up their minds about the major party leaders pretty quickly. Iain couldn’t escape his image of being old-fashioned, a hanger and flogger, and not quite up to the job. And Michael never shook off the ‘something of the night about him’ attack by Ann Widdecombe.
My view increasingly came to be blunt: a large share of the voting public had simply written off the Tories after 1997. They weren’t going to listen to what they had come to believe was an arrogant bunch of politicians who they believed were more interested in looking after their own interests than anybody else’s. And even when people did listen to something we said, they would mark it down, irrespective of whether they agreed with it or not, simply because it was ‘the effing Tories’ that were saying it.
What followed from this was that government failure, even if on an epic scale, wouldn’t see us return to power. Simply put, as bad as Labour were, the electorate thought they were better than the alternative. We needed to prove that we had listened, learned and changed.
I am saying a lot about this period because it forms the backdrop to my later decision to stand for the leadership. Tony Blair and Gordon Brown had, respectively, eleven and twenty-four years in Parliament before leading their party. I had just four.
I had, however, joined the front bench, though the jobs I held before 2005 were not particularly significant. The first rung on the ladder was becoming one of several deputy chairmen of the Conservative Party. Being appointed deputy shadow leader of the House of Commons was only marginally less meaningless. After all, in opposition you have virtually no control of the parliamentary timetable, so there is little enough for the shadow leader to do, let alone their deputy.
But the non-job did give me an opportunity. My boss Eric Forth decided to take a week off one Thursday, and handed the task of Business Questions over to me. I made a reasonable fist of it, with a few funny jokes and a half-decent attack on the government. The parliamentary sketchwriters gave me the thumbs up. These things get noticed.
But the most important lessons from this period came from spending time with a very bright group of relatively young Conservative colleagues, commentators and former staffers who wanted to understand why we kept losing, and what needed to change.
Andrew Cooper, who had become the founder of the market research company Populus, and Daniel Finkelstein, now a Times columnist, had joined the CRD shortly before the 1997 debacle. After the 2001 election they had teamed up with George to begin pressing the party to change. In a series of papers, articles and polls they argued that the Tory Party would not win again unless it understood why people had turned away from it. I joined in with this group, and together with others like Michael Gove, Ed Vaizey and Nicholas Boles we began to meet, usually at Policy Exchange, the new modernising Conservative think-tank, and talk over pizzas and beer.
As a genuine, moderate and liberally minded One Nation Conservative, I was an enthusiast for change. At the time I wrote that there were three essential components for a successful modern conservatism: ‘First, we need to reclaim the full set of values that makes conservatism whole. I joined up because the Conservative Party combined a message about aspiration – that everyone should be free to do what they could and be what they could – with compassion for the weak, the vulnerable and those left behind. Second, we must look outwards and forwards, not inwards and backwards. Parties should exist to identify and address the modern challenges that our country faces. Finally … conservatism is nothing if it is not practical. We need a relentless focus on the things that people care about in their daily lives: the public services they use, the taxes they pay and their hopes and fears about the future.’
In other words, pretty much everything needed to change. Instead of tax cuts, crime and Europe, we needed to shift our focus onto the issues the Conservative Party had ignored: health, education, and tackling entrenched poverty. It simply wasn’t acceptable to have so few women MPs, so little representation from ethnic minorities, and such a poor geographical spread of Conservative seats. As I came to believe passionately, words alone do not work; you need positive action. It’s no good simply telling talented British Asians or young businesswomen just how meritocratic you are when the first meeting they attend is a sea of white male faces.
And the Conservative Party had to stop putting people off with curtain-twitching moralising. Yes, there were genuine arguments about family breakdown and behaviour that needed to be made, but we were in no position to make them. We had to earn the right to be heard on these and other subjects.
Added to this, we all agreed that it was time for the Conservative Party to make a decisive step in favour of equal treatment for gay people. In 2003, Labour had repealed the law that banned councils from ‘intentionally promoting homosexuality’. It was known as ‘Section 28’, after the clause in which it appeared in the Local Government Act 1988, passed by the Conservatives.
For me at the time, the reason this legislation had been passed was that councils were overstepping their role. What business had a local council promoting sexuality in any form? But by arguing this I was ignoring an even bigger question: what were we doing backing what looked like, and what was for many, an attack on homosexuality? As Nick Boles later put it to me, ‘It’s not about what councils should and shouldn’t do. That’s not the point. It makes gay people feel like they’re worth less.’
In all of this, there was something we agreed shouldn’t change: we were all convinced that the Conservative Party had become, and should remain, a Eurosceptic party.
While we were all at that time supporters of the UK staying in the European Union, we certainly didn’t see support for the EU, as it was currently constituted, as in any way ‘modern’. But we did believe that ‘banging on about Europe’ (a phrase I was famously to use a year later) was damaging, because while it was just about in the top ten issues for the British public, it seemed to be the only thing that the Conservative Party really cared about.
The biggest influence on me in all these discussions was George Osborne. He was the most convinced, and the most convincing, moderniser. From the very start we built a genuine partnership of a kind that I believe is very rare in modern politics. We each wanted the other to succeed. There was no senior partner and no junior partner. Above all, what mattered most was trust: we came to know that we could tell each other anything, and it would not be passed on to others, and certainly not to the press.
This relationship, and our shared view of what needed to happen, would become stronger during the general election of 2005. Michael Howard gave us both key roles and ringside seats in the last of the contests that we would fight and lose together.
7
Our Darling Ivan (#litres_trial_promo)
‘You’re the first, the last, my everything …’ The lyrics of the Barry White song boomed across the operating theatre from a radio. I’d always been a fan of his music, but I was concerned that it was too loud, and the team of doctors and nurses hovering over Samantha wouldn’t be able to concentrate.
I needn’t have worried. Everything went smoothly. And within minutes I was holding our first-born son, Ivan.
It was 8 April 2002, and we were in Queen Charlotte’s Hospital in Hammersmith. Samantha was having an emergency caesarean, because when her contractions started it turned out that Ivan was ‘feet first’. In other words he was the wrong way round in the womb, or what they call an ‘undiagnosed breech’.
Sam and I had been married for five years, and had built our life together in our house in North Kensington. Neither of us had any regrets about waiting before having children. Sam had the job she had worked so hard for, as creative director at the Bond Street store Smythson. I had been elected to Parliament, representing a seat that suited me down to the ground. We had taken the risk of borrowing a lot of money to buy a small house in the constituency, in the hamlet of Dean, near Chipping Norton. There didn’t seem to be a cloud on the horizon. But our life was about to change in a way we never expected.
When Ivan first arrived, there didn’t seem to be anything wrong. With caesarean births, the dad is the first person to hold the baby. Bursting with pride, I squeezed him tight as we crossed the room to check his weight and carry out the initial tests. Ivan was a small baby, just over six pounds, but he passed all of them with high scores.
We were the typical proud parents. Grandmothers and grandfathers, sisters and brothers all came to visit the new arrival in a room that rather eerily overlooked the exercise yard of next-door Wormwood Scrubs prison. One of the first to come was my godfather Tim Rathbone, who was suffering from terminal cancer and was being treated at the next-door Hammersmith Hospital. I could see that he was dying, and it felt so poignant that he was there.
Once Samantha was well enough, we headed off to her mother and stepfather’s house in Oxfordshire, where we were going to spend those supposedly idyllic first few days together. But then we noticed that something was wrong. Ivan was sleepy, like many premature babies. And, again like many others, he would sometimes wake with a start, hands outstretched. But we noticed that these sudden and jerky movements were happening more and more.
The worries mounted. He wasn’t feeding properly. He was losing weight. And the movements got worse. He was tiny, but these looked like full-grown seizures. So, after a friendly but inconclusive visit from the local GP, we jumped in the car and headed for the John Radcliffe Hospital in Oxford.
And so the litany of specialists, children’s wards, tests and treatments began. The staff at the hospital did all they could to reassure us. But when you watch your tiny baby undergoing multiple blood tests, your heart aches. When they bend him back into the foetal position to remove fluid from the base of his spine with a long, threatening-looking needle, it almost breaks.
The meeting with the consultant, Dr Mike Pike, for the initial verdict on all these tests is etched forever in my mind. As we sat down, a box of tissues was placed on the table by our side. ‘Severely delayed development,’ he said. These words were carefully chosen, and there is a whole industry of literature and thought behind them. But they don’t mean much to the uninitiated new parent. I asked whether this meant he would struggle at sport, or spend his life in a wheelchair. ‘I’m afraid it’s more likely to be the latter,’ was the reply.
It turned out that Ivan had ‘Ohtahara Syndrome’, named after the Japanese physician who first observed it. Like many of these diagnoses, it is more a description of a set of symptoms than an explanation of how it happened or what can be done about it. Put bluntly, the cause was unknown. The treatment options were uncertain. And there was no cure.
Ohtahara Syndrome is incredibly rare, but our Ivan was a typical case. What its sufferers tend to have in common is severe and often uncontrollable epilepsy, and very poor outcomes in terms of development. Most are quadriplegic (unable to use their limbs) and suffer severe developmental delay (unable to speak, or communicate properly).
The news hit us both very hard. Like all parents, we had worried about having a healthy baby. But, also like many others, it is something you don’t think will actually happen to you. We were almost completely unprepared.
And when it does happen, the effect is sudden, deep and lasting. It takes a long time to understand what has taken place. You enter a period of mourning, trying to come to terms with the difference between the child you expected and longed for, and the reality that you now face.
But like so many things to do with the human spirit, there is a resilience that you didn’t know you had. You feel such strong bonds of love, and such desire to protect this beautiful little creature, that something inside you helps you through.
We went home to Dean, and the tears flowed. How would we manage? What would it be like? Most of all, how could we cope with seeing our precious child suffer so much?
Today, when I think of Ivan, I think of how we did cope. I think of the smiles and the holidays. Covering his legs with warm sand on the beach in Devon. Or trying to get him to sit on a pony. Or lying with him for hours on my lap or on my tummy. Having a bath with him and the other children, with Nancy and Elwen gently washing his hair. Swinging in a hammock and listening to him gurgle with pleasure. The happy memories are now at the front of my mind.
But if I think for too long, I also remember the seizures. He could have twenty or thirty in a day, lasting for minutes, or sometimes hours, his small frame racked with spasms and what looked like searing pain. By the end his clothes would be drenched in sweat and his poor little body exhausted. And so often, there was nothing we could do. It was a torture that I can hardly bear to remember. For Samantha, the mother who bore him and who loved him so deeply, it was a torture that was tearing her apart.
In those early days after Ivan’s birth we talked and talked together. On one car journey back from the John Radcliffe to Dean I remember saying, ‘We are going to make it.’ We had to. We hadn’t wanted this. We weren’t prepared for it. But we loved him, and we would find a way through. If we, with all our advantages, our security, our love for each other, couldn’t manage, then who could? There would be many times in the subsequent months and years when we felt close to collapse, and would remind each other of this conversation.
Something had happened before Ivan’s birth that did give me pause for thought – and at least some mental preparation. A constituent called Tussie Myerson who lived in a neighbouring village had asked me, as the new MP, to come and see her to talk about the care, or rather the lack of it, that her severely disabled daughter Emmy was receiving. When I arrived she sat me down at her kitchen table, wedged in with her nine-year-old daughter in a wheelchair next to me, so I couldn’t move. She told me years later that she had done this on purpose: she wanted me to see just how difficult it was to cope with someone who couldn’t feed themselves. Who couldn’t communicate. Who was in permanent danger of choking. Who was frequently ill and prone to powerful seizures. Tussie never told me whether or not I passed the test. But as I look back and remember our discussion of care packages, respite breaks and special schools, and how little I knew then, my sense is that I only narrowly avoided outright failure.
After Ivan was born, Tussie got in touch and offered much sound advice, along with huge amounts of sympathy. She said, ‘Always remember, you didn’t volunteer for this. You’re not angels, and you shouldn’t pretend that you are. Do everything you can to keep your love for each other, and your marriage and family together.’ I always remembered this, and have passed on similar advice to dozens of other parents with disabled children.
That said, we had no idea how difficult it was going to be. We soon moved from the John Radcliffe back to our home in London – and frequent visits to St Mary’s Hospital, Paddington. More tests. More drugs. More attempts to stabilise Ivan’s condition, with the aim of providing at least some limited quality of life.
From there he moved on to Great Ormond Street, which richly deserves its reputation as one of the best children’s hospitals in the world. We tried different medications. Cocktails of anti-epileptic drugs, one added to another, with dosage levels changed to try to get control of the seizures. Too strong and he was crashed out, asleep for most of the day, with his chances of developing like other children set back even further. Too weak and the seizures would return, his little body convulsing and our hearts breaking all over again.
Most of the medicines tasted disgusting, and it was often impossible to get him to keep them down. He developed ‘reflux’, where everything – milk and medicines – would come shooting back up again, sometimes accompanied by a burp and a winning smile. It was almost as if he was telling us that nothing was going to work. Even when we could get the medicines down, the epilepsy always seemed smarter than the doctors. No matter what combinations of drugs and treatments we tried, it would emerge again, the seizures often stronger than before.
We tried steroid injections, which have helped other children. They made his weight balloon and his blood pressure rise, and his kidneys came close to failing. We ended up in the renal ward of Great Ormond Street, where Sam and I took turns to sleep on the floor by his bed. Most of the other children on the ward had kidney problems, and when Ivan was asleep I would read them stories to pass the long hours they were stuck in bed waiting for the next operation or dialysis session.
We certainly saw the best of the NHS, with consultants like Mike Pike at the John Radcliffe, Diane Smythe and Mando Watson at St Mary’s and Helen Cross at Great Ormond Street. They have changed and improved the lives of so many children, and they did a lot to help Ivan. But I think they would all agree that he was one of the toughest cases they’d ever had to deal with.
We also saw at first hand how little is really known about some of these complex medical conditions. Before Ivan, I had always assumed that even if they were incurable, most diseases were correctly diagnosed, their causes were understood, and medicines could always be prescribed to ease at least some of their symptoms. But in this case of severe epilepsy, the doctors didn’t know the cause, and even if the medicines did (briefly) work, they didn’t really know why. They were basically changing dosages, hoping to make progress but with little understanding of what might work and what might not.
Wanting to know whether we could have other children, we signed up for ‘genetic counselling’, which in 2003 was very much in its infancy. This was another field in which we discovered how little is actually known. To start with, no one had any idea whether Ivan’s condition was inherited or not. If it was, there might be a one in four chance of it happening again. If it wasn’t, it was one in many thousands. So we were offered a sort of ‘blended probability’ of one in twenty. Remembering how few of my father’s 20–1 shots ever came in at the races, we decided to risk it.
It was one of the best decisions we’ve ever taken.
Nancy arrived in 2004. We were so worried something might be wrong that every movement she made was carefully watched and analysed. We needn’t have worried: she was the easiest of babies, and hit every milestone on time.
Above all, we saw the compassion that there is in the NHS. I lost count of the nurses who went above and beyond. Who would stop at nothing to try to make Ivan comfortable. They tried so hard to look after us, as well as him.
