Motor Neurone Disease/Gordon Aikman
(7 years, 9 months ago)
Commons ChamberRead Hansard Text Read Debate Ministerial Extracts
Ian Murray (Edinburgh South) (Lab)
I am very grateful to the good offices of Mr Speaker and you, Madam Deputy Speaker, for granting time for this Adjournment debate. I want to talk about the dreadful disease that is motor neurone disease and to pay tribute to the life of Gordon Aikman.
I wish we were not having this debate, because that would mean Gordon Aikman was still with us. He sadly passed away on 2 February, aged just 31.
I want to do three things this evening: first, pay tribute in this House to Gordon Aikman and what he achieved both in his life and in his death; secondly, give more exposure to what MND is and how the disease affects those stricken by it; and, thirdly, discuss what we can all do and what the Government can do to help find a cure.
Alberto Costa (South Leicestershire) (Con)
I congratulate the hon. Gentleman on bringing this much needed debate to the Floor of the House. Will he join me in paying tribute to local MND associations across the United Kingdom for the invaluable support they provide? I know of the excellent work of my local Leicestershire and Rutland association, having heard at first hand from a constituent and friend of mine, Ruth Morrison, about her tragic personal experience. The support that is available is of immense value and I hope the hon. Gentleman will join me in paying tribute to the work of those associations.
Ian Murray
I am delighted that the hon. Gentleman was able to intervene to emphasise the good work that MND associations, including MND Scotland, do across the country. I pay tribute to him for highlighting that good work in the House and I ask him to pass on our best wishes to his constituents who are stricken by this dreadful disease.
Gordon Aikman was only 29 when he was diagnosed with MND. He was given 14 months to live but, as was usual with Gordon, his dedication and determination made sure he doubled that to 28. Gordon died leaving behind a loving husband, Joe, who is with us this evening, a doting mother, Nancy, and a devoted sister, Lorraine. He has become a twinkling star in the sky for his young niece Ailidh and young nephew Murray, who would describe Gordon as “Uncle Gordon with wheels” when he was in his wheelchair. He leaves behind friends whose lives will forever have a Gordon Aikman-shaped hole in them. All our thoughts at this time go out to everyone who knew him.
Gordon leaves a legacy that few of us will ever be able to match. Gordon was an inspiration: dedicated, intelligent, meticulous and simply a lovely person to be around. He touched the lives of everyone who had the pleasure of getting to know him and spend time with him. He was a graduate of the University of Edinburgh and a former gymnast who represented Scotland. He was working as director of research for Better Together, the campaign to keep Scotland in the UK, during the Scottish independence referendum in 2014 when he fell ill. He had gone to the doctors with recurring numbness in his hands. He was beginning to find it difficult to tie his shoelaces and button his shirts. He anticipated, as we all do, that a pack of pills and a bit of rest would do the trick. How wrong could he be?
I cannot do justice to what happened to Gordon, so I will let Gordon tell his own story in his own words, quoting from the moving Scotland on Sunday article he wrote in the week he was given the sad news. He wrote:
“I am lying on a cold hospital bed, stripped down with electrodes stuck all over my skin. A doctor quietly takes notes as pulses race through my body. After almost an hour I get back into my suit, ready for a packed day of calls and meetings.
The doctor steps out to speak to my consultant. I flick through the morning’s headlines on Twitter and quickly check my email as I wait. In my job as director of research at Better Together, I have got to be up to date. The doctor is gone some time. My appointment has already overrun. I’m irritated. He returns and says: ‘Your neurologist would like to see you at 1.15 tomorrow.’
‘Tomorrow won’t work. I have meetings. Meetings I can’t miss.’ He tilts his head to one side, holding my stare for what seems like an eternity, before stressing: ‘Your neurologist will see you tomorrow. 1.15.’ The penny starts to drop. Suddenly that conference on the economics of independence seems far less important. Fast-forward 24 hours and I am back at Edinburgh’s Western General. This time I sit opposite my consultant neurologist; a young, caring face looks back. He speaks softly, but this time the atmosphere is different. He talks slowly. He pauses. I know it isn’t good news, but nothing could prepare me for what he is about to say.
Tears form in his eyes as he explains that all the diagnostic tests point to something called Motor Neurone Disease or MND. I’m confused. ‘That doesn’t sound good,’ I respond awkwardly, thinking to myself: ‘I don’t have time for this.’ He asks what I know about MND. ‘Very little,’ is my honest answer.
‘It is a rare, progressive and debilitating disease,’ he explains, ‘that attacks the brain and spinal cord.’ I don’t believe what he is telling me. I shake my head in disbelief. ‘In time,’ he says, ‘it will lead to weakness, and muscle wasting,’ affecting how I walk, talk, eat, drink and breathe. How could this be? My symptoms seemed so innocuous. ‘Why me? Why now?’ I ask. He bites his lip, before replying candidly: ‘We just don’t know unfortunately.’
When I press further, he concedes: ‘There is no cure.’ I cut to the chase: ‘What is the prognosis? How long will I live?’ Hesitant, he prefixes his answer with ‘everybody is different’ and ‘it is difficult to predict’. He then wells up before admitting that we are talking ‘just a few years’. My head is a mess. I stand up, walk across to the window, run my hands through my hair and stare out into the middle distance. My mind goes blank. I don’t know what do. I’m 29 years old and I have just been given a death sentence.”
Gordon went on to write:
“When you are told you are dying you face a choice: you can wallow in self-pity, or you can make the most of what you’ve got”.
And, my goodness, Gordon certainly made the most of what he had. He married his husband Joe and travelled extensively. As we heard at the funeral and the celebration of Gordon’s life on Saturday, he travelled to New York, Boston, Amsterdam, Dublin, Stockholm, Madrid, Tenerife, Prague, Tuscany, Newquay, Paris, Cork, Munich, Orkney, Fort William and California, as well as Israel, South Africa, Switzerland, and had a trip on the Queen Mary II and a break in Iceland to see the northern lights. If I have missed any, I apologise. He also spent as much time as he could with his family and his friends.
With all of that, Gordon was determined to ensure that those who suffered from MND got the best care, the best deal and the hope of a cure in the future. Understanding lies at the root of all human endeavour. In order to defeat something, we must find out what it is first, so here is what we do know and, most importantly for tonight’s debate, what we do not know about MND.
Chris Stephens (Glasgow South West) (SNP)
I congratulate the hon. Gentleman on securing this debate. I agree with him that Gordon Aikman was indeed an inspiration. Does he agree that his campaigning work, particularly with the First Minister of Scotland, ensuring changes to the law around voice therapy, for example, and doubling the number of specialist nurses, was important to his campaign?
Ian Murray
I do agree, and I am delighted that the hon. Gentleman was able to make that point, but as the First Minister said on Saturday at the celebration of Gordon’s life, all the credit for those changes to care in Scotland goes to Gordon and his campaign. There is a need for us all now to take that campaign and make sure that the rest is delivered.
Researchers have yet to discover how or why people develop the disease. In Gordon’s case and in around 95% of diagnoses, there is no family history of the condition. MND is a fatal, rapidly progressing neurological disease that affects the brain and spinal cord. It can leave people locked in a failing body, unable to move, talk or, eventually, breathe. It kills a third of people within a year and more than 50% within two years of diagnosis. It affects up to 5,000 adults at any one time in the UK and kills six people every day in the UK.
Mark Menzies (Fylde) (Con)
I thank the hon. Gentleman for securing this evening’s debate. I never met Gordon, but I have been inspired by what I have found out about him in the last two weeks. We all come across constituents who will face life-changing situations, and Gordon will become the reference point. I will refer people to what he did, how he coped with adversity and how he helped to improve and change the lives of others. If I may also say in this intervention, Madam Deputy Speaker, I would urge the Minister to look at Gordon’s Fightback website and take on board some of the points that he raised, because we have much to learn from what he told us.
Ian Murray
I am delighted at the hon. Gentleman’s intervention; he is indeed right. Many people have drawn inspiration from Gordon’s Fightback, the way in which he dealt with the disease, the dignity with which he did so, and the fact that he spent his remaining time fighting to raise over half a million pounds for the things that he believed in, when most of us would have been lesser human beings and wallowed in self-pity or done something else. It is testament to that that we have the Secretary of State for Scotland and the Minister in the Chamber tonight listening to the debate. Hopefully, the Minister will be able to respond with some positive developments to keep Gordon’s memory alive.
Some people may experience changes in thinking and behaviour, with a proportion experiencing frontotemporal dementia, which is a rare form of dementia. This is the key thing about MND, though: it has no cure. It is that last point that drove Gordon on. He was a tireless and courageous campaigner on behalf of people living with MND, as well as their families and loved ones. He created his Gordon’s Fightback campaign, which we have heard about tonight, and his tenacious work with MND Scotland was inspirational to many and helped to raise awareness of MND across the country.
Gordon had raised over £500,000 by the time he died —more now, incidentally—but he had also put MND on the map. Do you remember the ice bucket challenge, Madam Deputy Speaker? I do not know whether you participated yourself—if not, we could maybe go into Palace Yard after this debate and relive what happened in 2014—but that was the summer campaign, where we all soaked each other with iced water in the name of MND awareness and fundraising. It was with campaigns such as these that Gordon doubled the number of—
Madam Deputy Speaker (Mrs Eleanor Laing)
Order. For the avoidance of doubt, I am glad that the hon. Gentleman has mentioned this. Never was there a better campaign to draw attention to something that needed attention drawn to it. Although I managed to avoid it myself, I did engineer other people’s participation. The hon. Gentleman has done very well to mention this issue today. I had not realised that the two things were connected. What an absolutely brilliant campaign.
Ian Murray
I am delighted, Madam Deputy Speaker, that you are now able to make the connection between that campaign and Gordon’s Fightback, and are aware of the significant amount of money that was raised in 2014. I do not think there was ever an end-point to the ice bucket challenge. If there was an end-point, perhaps someone from MND Scotland could let me know. I think the way it went was that if someone was soaked, they nominated others, as indeed you have done, Madam Deputy Speaker. With the grace of the House, therefore, I would like to nominate Madam Deputy Speaker to do the bucket challenge. I think the terminology is, Madam Deputy Speaker, “You have seven days”.
That, then, was the summer campaign when we all soaked each other with iced water in the name of MND awareness and fundraising. It was through campaigns such as these that Gordon doubled the number of specialist nurses in Scotland, paid for by the NHS rather than by charitable donations. Among Gordon’s more recent achievements was ensuring that MND patients with communication difficulties had access to their own voice synthesizers on the NHS. It was Gordon’s biggest fear—not just losing his own voice, but the synthesisation of his own voice being someone else’s. He fought for that and got it changed.
Despite those and other improvements, however, there is still much more to be done in the battle to defeat MND. First and foremost, if we are to find a cure for MND, we must vastly improve our understanding of its root causes, and it is here that I hope the Minister can help us this evening. MND is a question to which we have yet to find a suitable answer. Researchers still do not know what causes the disease. A key recommendation of Gordon’s Fightback campaign is to double public investment in MND research from its current level of £5 million a year to £10 million a year. Unlike some of Gordon’s wonderful achievements that we have highlighted this evening, there has to date been no action taken to meet that goal. At present, MND research relies heavily on the support and contributions of the voluntary sector.
The MND Association, sister associations in England and Wales and MND Scotland have a research portfolio comprising over 80 projects, totalling over £14 million of charitable funds, including £5 million raised by the very ice bucket challenge in which you will participate, Madam Deputy Speaker, in the next seven days. I am conscious, Madam Deputy Speaker, that this might be my last ever speech in this Chamber, but I shall carry on regardless.
The association’s support for MND research focuses on five key themes: identifying the causes of MND; developing models of MND; identifying markers of disease progression; developing treatments; and improving healthcare and disease management for those affected.
We have a real opportunity to embrace the leading research base in this country to do just that. For centuries, major leaps forward in medicine and science have been made in the UK. With the right investment and support, we could find a cure for MND here now. Scotland is uniquely placed to become a hub for innovative research into the disease for a number of reasons. Edinburgh University’s Euan MacDonald centre is already undertaking cutting-edge research into MND. Patients already have a unique patient identifier, which means those with MND can be more easily identified and monitored throughout their interaction with the health service. The increased number of specialist MND nurses will allow better, more detailed tracking of how the disease progresses in patients.
Progress has been made. The Euan MacDonald centre thinks it might have found a potential reason why motor neurons are vulnerable to stress and disease, which could be one of the very first steps to avoiding or halting the progression of MND. This collaborative project, involving the universities of Edinburgh and Cambridge and institutions as far afield as Japan, is also helping understand how motor neurons develop and regenerate. The cure could be in this generation’s hands. Funding in the United States—where the ALS Association, the US equivalent of the MND Association, has identified a key genome with funds raised by the US bucket challenge—could be the first step towards a cure.
As well as doubling public research funding, the Minister could help by making “fast-track” benefits fit for purpose. People with MND do not live long—we know that—but it can take several months to process applications for the benefits that they need, such as personal independence payments. Currently, the “fast-track” system applies only to people who are judged to have less than six months to live. That needs to be extended to 12 months, or, indeed, the system should apply at the time of diagnosis.
The hon. Member for Dumfries and Galloway (Richard Arkless) hoped to attend the debate, but he is stuck on a train somewhere between Wigan and London, and the main business ended early today. Let me just mention that his mother and brother-in-law both died of MND. I believe that he met the Under-Secretary of State for Health, the hon. Member for Warrington South (David Mowat), just before Christmas, with the aim of ensuring that when a DWP assessment was completed for someone suffering from MND, that person would not be reassessed. However, I understand from the hon. Gentleman that the Department for Work and Pensions is still issuing letters about reassessment. I should be grateful if the Minister wrote to the hon. Gentleman, and me, to update us on what progress has been made in relation to not issuing such letters when people have been diagnosed with MND and a proper assessment has already been carried out.
Let me also pay a brief tribute to another friend of mine who died from MND. Robert Wilson died in August last year. He was a former partner at Deloitte in Edinburgh, and became the first chair of the Scottish Premier League in 1998 after helping to set it up. I got to know Robert when he advised the Foundation of Hearts to be in a position to take Heart of Midlothian football club out of impending liquidation. His straight-talking style was direct. He said things as he saw them. He was always challenging, and always hugely helpful. We were lucky to have him, and so was the club. It is thanks in large part to Robert that it survives and thrives today; it would have disappeared had it not been for people like him. Robert and I subsequently served together on the board of Hearts football club. Everyone was really fond of him. We were robbed of his intense intellect, his passion for the club, and his companionship when MND took his life. He was respected and admired by all, and will be very sadly missed, especially by his wonderfully supportive family.
Gordon had a nickname when he worked at the Scottish Parliament. His nickname was “14%”. Many people may ask why that was. It was because when he worked as a researcher for the Scottish Labour party, he was responsible for 14% of all the freedom of information requests submitted to the Scottish Government. That fact was even mentioned by the former First Minister, the right hon. Member for Gordon (Alex Salmond), at First Minister’s Questions. The right hon. Gentleman was rather irritated by it. If Gordon is to leave any legacy, irritating the former First Minister is very high up in my book. Tonight, however, I want us to change Gordon’s nickname. I want us to change it from “14%” to “100%”, and we can do that by doubling the annual research budget for MND from £5 million to £10 million a year.
Gordon, in his death, transformed the lives of so many. The world is a better place for his having been in it. The understanding of MND is enhanced by his dedication to educating. The care of those suffering is enshrined in his having fought for it. The rights of those affected are secured because he demanded that. The cure for MND is closer after his fundraising for it. Gordon did so much in such a short space of time, and now it is our time to find a way to honour that legacy. I say this to the Minister: let us pledge tonight to be a little more like Gordon, and double the MND research budget.
In life, Gordon gave a voice to MND patients; in death, Gordon’s own voice speaks on. It speaks on in the words that he wrote, in the things that he achieved, and in the lives that he touched. I opened my speech in Gordon’s words, and I will finish with them, as echoed by the Scottish Labour leader Kezia Dugdale at his funeral on Saturday. Gordon said:
“What I have lost in strength of body, I make up for in strength of mind. I am more determined and driven than ever... I want to make every day count.
My love is deeper. I find joy in simpler things and in different places. I am more chilled out, at peace with the fact that there is so much in life that is out of our control.
Let’s celebrate the rich, diverse and complicated world we live in. Let’s savour each day. Let’s measure life not by length but by depth.”
Gordon Lewis Aikman, born on 2 April 1985, died on 2 February 2017, aged 31. May he rest in peace, but may his legacy live on.
The Minister for Universities, Science, Research and Innovation (Joseph Johnson)
I thank fellow Members for their contributions and passion on this topic, and in particular the hon. Member for Edinburgh South (Ian Murray) for calling this debate.
We have heard this evening how many in this House were saddened to hear of Gordon Aikman’s passing this month, and we have heard how his courageous and incredible efforts to raise awareness of motor neurone disease and help others were truly inspirational and have made a huge difference to the lives of MND sufferers. His loss will of course be most keenly felt by those who knew him best, such as people who are in this Chamber today, and all Members’ thoughts are with his family and friends at this difficult time.
Sadly, Gordon’s condition was not unique. It is estimated that there are up to 5,000 people with MND in the UK today, while each year approximately 1,100 people are diagnosed around the world. The Government are aware of the immense difficulties and challenges faced by MND sufferers and we are taking significant action, both via research funding and alterations to clinical guidelines, to improve MND patient care and treatments.
As the hon. Member for Edinburgh South said, funding MND research is key if we are to find a cure and improve treatments for MND patients. We are investing over £1 billion a year in the National Institute for Health Research, whose spend on research relating to neurological conditions was £53 million in 2015-16. In addition, the Government fund the seven research councils, which invest around £3 billion each year in research covering the full spectrum of academic disciplines, from the medical and biological sciences to astronomy, physics, chemistry and engineering, social sciences, economics, environmental sciences and the arts and humanities. The majority of research council investment in MND research is made by the Medical Research Council, with some relevant research also funded through the Biotechnology and Biological Sciences Research Council.
The MRC supports research relating to a broad portfolio of neurodegenerative diseases and currently spends, as the hon. Gentleman said, about £5 million per year on research relating to MND. The MRC funds research at many leading institutes in the country, including the MRC Laboratory of Molecular Biology, the UCL Institute of Neurology, the National Hospital for Neurology and Neurosurgery and the University of Oxford.
MRC-funded research includes projects to increase understanding of the basic molecular mechanisms underlying MND, improve the assessment of disease progression and identify biomarkers of disease activity in patients with different types of MND. It also works in partnership with charities and other funders, nationally and internationally, to support research into MND.
In addition to the MRC, the BBSRC funds world-class bioscience and biotechnology that underpins health research. In the context of MND, this may include the basic bioscience of motor neurones. Over the last five financial years, the BBSRC has spent about £4.7 million on research projects which focus on basic underpinning research that will increase understanding of the normal cellular processes that support motor neurone function.
In addition to research funding, we understand that positively influencing the healthcare and clinical system is key if we are to improve the lives of MND sufferers. The Government understand that one of the major hurdles facing MND patients is the challenge of getting an accurate and fast diagnosis. No two people with MND will be affected in exactly the same way, and there is no one test to diagnose the condition.
The disease can be difficult to identify in its early stages, as the symptoms are often mild and shared with more common conditions. The National Institute for Health and Care Excellence published its MND assessment and management guidance document in February 2016. The guidance sets out MND’s signs and symptoms, provides information about local referral arrangements and recommends that robust protocols and pathways are in place to inform healthcare professionals about the disease and how it might present itself. I know, and am glad, that the guidance was described by the leading charity, the Motor Neurone Disease Association, as “hugely significant”.
We know that MND patients value and need specialist services, and this is something that Gordon Aikman successfully campaigned for in Scotland. NHS England has set out that services for MND patients should be specialised. Care for MND patients involves a multidisciplinary team approach from MND specialists who should work to ensure that patients are fully supported and co-ordinate with other care providers or teams as necessary.
NHS England commissions the care that patients may receive from 25 specialised neurological treatment centres across England. It has published a service specification setting out what providers must have in place to deliver specialised neurological care. This supports equity of access to a high quality service for patients, wherever they live. Patients are also able to access the drug Riluzole on the NHS. This is the only licensed treatment available that can slow the progression of the disease. I know that specialist MND nurses are highly valued by MND patients and their families. Recruitment of nurse specialists is a local matter, but it is important to highlight that such nurses are a key part of the national specialised services that NHS England delivers for patients with neurological problems such as MND.
Another of Gordon Aikman’s seven key campaign points was to guarantee that no MND patient should die without a voice. Augmentative and alternative communication—AAC—aids are used to restore communication for people who cannot communicate using speech, and to address severe impacts on independence and quality of life. NHS England has established a national AAC service, commissioned from 13 centres. It is the first national AAC service of its kind in the country. Priority for assessment is given to patients who have a life-limiting condition such as MND. I am glad that this was welcomed by stakeholders as a major step forward in providing clarity and consistency of provision.
I hope that this debate has reassured fellow Members that the Government are aware of the immense difficulties and challenges faced by motor neurone disease sufferers and that we are taking action in multiple areas to improve the care and prognosis of MND patients. Gordon Aikman’s legacy will live on for a long time due to his courage and his determination to raise the profile of MND and to make a real difference to the lives of MND sufferers.
Question put and agreed to.