Motor Neurone Disease/Gordon Aikman

Lord Johnson of Marylebone Excerpts

Monday 20th February 2017 Commons Chamber

[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.