Motor Neurone Disease

Can I start off by placing on record my thanks to the Motor Neurone Disease Association for the assistance that I have had in putting together this debate.


The aims of this debate this afternoon are to firstly raise awareness of Motor Neurone Disease, secondly to outline some of the challenges facing people with MND in Wales and thirdly, to establish more information and call on the Welsh Government to do more to support people with MND.


Now this debate follows MND Awareness Month in June and Global ALS/MND Awareness Day was held on Saturday 21st June .


The theme this year is Voice – as people with MND have made it clear that spreading the word and raising awareness can be a powerful way to keep their views being heard, while their own voice might be getting fainter.


Members may also have seen the MND Association Voice Campaign posters at Cardiff Station




With that in mind and the knowledge that 80 – 95% of people with MND will experience communication problems as their speech deteriorates; will the Minister advise us  how he will implement  his  decisions in response to the review of the provision of communication aids  and how he will  ensure sufficient funding on an on-going basis?


Motor Neurone Disease is a progressive disease that attacks the motor neurones, or nerves, in the brain and spinal cord.

This then means messages gradually stop reaching muscles around the body, which in turn leads to weakness and an increasing loss of mobility in the limbs.


The effects of MND can vary enormously from person to person, from the presenting symptoms, and the rate and pattern of the disease progression, to the length of survival time after diagnosis.


Like other neurological conditions, MND can affect how you walk, talk, eat, drink and breathe – though that’s not to say that all symptoms necessarily happen to everyone or that everyone will all develop these symptoms in any specific order.


And sadly, as many Members are already no doubt aware, there is currently no cure for MND – it is a progressive, terminal illness.


Approximately 250 people are living with MND in Wales.


It’s essential that people with MND and their carers can access the right care, in the right place and at the right time.


Unfortunately, MND can be extremely difficult to diagnose for several reasons.


Even in 2014, this condition is still little understood and this contributes to many people with MND not receiving the care and support they need.


Firstly, although MND kills five people every day, with half of people dying with 14 months of diagnosis, it is a comparatively rare disease.


The early symptoms can be quite slight, such as clumsiness, mild weakness or slightly slurred speech, all of which may have been attributed to a variety of other causes – and so it can be some time before someone feels it necessary to see a GP.


There is also no specific test to prove someone has MND, which means diagnosis requires the elimination of other potential conditions.


Naturally, this can take time – time that people living with MND simply do not have.


With that in mind I welcome the recent Neurological Conditions Delivery Plan for Wales launched on the 8th May, which sets out the Welsh Government’s expectations to improve services to people with neurological conditions.


There are, within the Delivery Plan, several Delivery Themes which have a particular significance for people with MND.


I am also pleased that the MND Association as a key member of the Wales Neurological Alliance was actively involved in contributing to the development of the Delivery Plan during its draft stages and will be working with the Wales Neurological Alliance in monitoring and holding the Local Health Boards to account to ensure service improvement.


However, in Delivery Theme One of the Delivery Plan, could the Minister clarify how he will ensure awareness of motor neurone disease specifically is raised as opposed to general awareness raising of neurological conditions?


I also welcome in Delivery Theme Two; the delivery expectation of a better understanding of neurological symptoms and care among GPs.


The Minister may be aware that the MND Association has been working with the Royal College of General Practitioners (RCGP) on an early diagnosis of MND and has produced a new Red Flag tool and a range of resources which will help reduce inaccurate referrals and therefore reduce the time to diagnosis.


The Red Flag tool is a simple A4-sized flow chart sent specifically to GPs and health professionals, to raise awareness of MND.


The first section aims to guide them through some of the symptoms of MND.


It then details progression rates and factors that are not supportive of a MND diagnosis in a second section.

If there are yes answers to more than one symptom and a progression factor then the GP is advised to refer the patient to Neurology.


Hopefully, the Red Flag tool will lead to people getting earlier referral to specialists and therefore quicker access to care and support.


Quite simply, progress into the treatment and care of people with MND will be boosted by faster and more accurate diagnosis, with the Red Flag tool.


Because MND can be rapidly progressing it is essential for an early diagnosis for a range of reasons; from removing uncertainty for the person experiencing the symptoms to enabling them to plan for the future.


It also allows specialist care and support to start early and also increases the window of opportunity to research into, and better understand, MND.


Therefore Minister, one of the aims of today’s debate is to call on the Welsh Government to make a commitment to ensure that all Local Health Board Chief Executives distribute the MND Association  Red Flag tool  to all GPs and other health professionals, such as speech and language therapists, across Wales.


I also welcome in the Delivery Plan the specific priority to ensure timely access to multidisciplinary assessment to support diagnosis where necessary.


As timely access to multidisciplinary assessment is of particular relevance to people with MND due to its often rapidly progressing nature, I trust the Minister will join me in welcoming the debate that took place on Monday about specialist nurses at the North Wales Neurosciences Network Board meeting?


Members will also be pleased to learn that the MND Association works in partnership with the North Wales Motor Neurone Disease Specific Advisory Group (MND DSAG)


This is a forum where stakeholder from a wide range of clinical and non clinical groups with a direct relationship to MND services assess, plan, priorities, advice on and review the delivery of services to people with MND in north Wales and reports to the North Wales Neurosciences Network Board.


MND DSAG has also been the driver of palliative care support to people with MND in North Wales.


Many people living with MND in South Wales are now receiving better co-ordinated care, closer to home, thanks to an innovative care network funded by the MND Association in a long term partnership with NHS Wales.

The aim of the network is to deliver an equitable service, even for those living miles from a hospital, and for all those with MND to receive the same standards of care.


The Network offers a multi-professional one-stop-shop approach, with a collaborative approach between neurology and palliative care, which results in fewer hospital visits for people with MND. Hubs are based in Swansea and Cardiff with a number of satellite clinics spread across the rest of South Wales.

Whilst MND may be a disease of low prevalence, it is one of high need and high cost.


Indeed, the average cost of care for someone with MND has been estimated at around £200,000 per year, in the last year of life – and this cost could increase significantly if poorly planned and poorly coordinated care leads to crises and emergency hospital admissions.


It’s quite clear that public services in Wales are currently facing significant financial challenges – and as a result, NHS and social services in Wales can find it challenging to meet the needs of people with MND in a timely and equitable way.


In fact the South Wales MND Care Network have identified a number of issues of concern regarding timely and equitable access to equipment for people with MND  such as poor access or delays to non-invasive ventilation, cough assist and mobile arm supports as well as long delays for assessment for major house adaptations.


Could the Minister advise how these issues will be addressed?




The profile of MND issues is well and truly on the up with the election of Madeleine Moon MP for Bridgend as Chair of the established All Party Parliamentary Group (APPG) on MND at Westminster.


The APPG will be launching an inquiry into augmented communication for people with MND in the autumn which will be calling for evidence from England, Wales, Scotland and Northern Ireland and I would like to ask the Minister to support and provide evidence to this very worthy inquiry?


I would also like to highlight the role of research as highlighted in the Delivery Plan in Delivery Theme Seven: Targeting Research which priorities a commitment to research, delivering improved diagnosis, management, treatment options and outcomes.


The third sector is a key partner in the development of research, both as a funder of research and supporting patient involvement in clinical trials and social research.


The Minister may not be aware that the MND Association is currently funding two sets of research at Cardiff University at the total cost of £420,367.


Firstly, a 3 year biomedical research project, which started in 2012 led by Professor Derek Blake, and secondly, from April this year, research led by Professor Vladimir Buchman. Professor Buchman is building on his research to extend his research team’s studies of Fused in Sarcoma (FUS) triggered MND.


The MND Association funds research that builds on recognised success and Professor Buchman’s research is a great example of this, as his research was recognised as one of the best to be published in 2013.


With this in mind could the Minister detail the Welsh Government’s own plans to support more research specifically into MND?


I also wanted to bring attention to a report published in 2012 by the MND Association with nine recommendations.


One of these recommendations was for better cross border arrangements to avoid the risk of people with MND falling through the gaps


Therefore could I ask that Mark Isherwood, as Chair of the Assembly Cross Party Group for neurological conditions meets with the All Party Parliamentary Group Chair, Madeleine Moon to discuss cross border issues as well as shared learning?


As the APPG noted in their inquiry into Specialist Palliative Care Services in England, specialist palliative care services not only provide a positive experience for the patient, but also reduce the burden on the NHS – which is why palliative care must always be on the Welsh Government’s agenda too.


Historically, end of life and palliative care services have focused on the needs of people with cancer, and as a result, the needs of people with other conditions, including progressive neurological conditions, have often been overlooked.


I’m pleased to say that there has been significant progress made in providing specialist palliative care for people with MND in Wales due to the efforts of the North Wales Disease Specific Advisory Group and the South Wales MND Care Network MND Care Networks in North and South Wales but there is always room for improvement.


It’s essential that there is equity of access to specialist palliative care services post-diagnosis for all people in Wales with Motor Neurone Disease and it’s important that we also learn from best practice across the country.


Now I accept that the Welsh Government has, in the past, shown some support for people with MND in Wales and I believe, Minister, that you too are a signatory of the MND Charter.


The five-point MND Charter sets out what good care looks like for people with MND and their carers and is designed to raise awareness and understanding of this devastating disease.


The five points are:


1. People with MND have the right to an early diagnosis and information


2. People with MND have the right to access quality care and treatments


3. People with MND have the right to be treated as individuals and with dignity and respect


4. People with MND have the right to maximise their quality of life


5. Carers of people with MND have the right to be valued, respected, listened to and well-supported.


There is nothing here that is controversial, and so I would urge Members of all parties to sign – and encourage their colleagues to sign up to this Charter.


We are a small institution here in Wales, but we have the power to lead the way.


If we can get all 60 Members to sign this Charter, we can send a direct message to the rest of the UK that we are listening – and we are leading the way in recognising support for people with Motor Neurone Disease.


I therefore, encourage the Minister to do all that he can to help support this cause.


Finally, I would like to make a special mention to the local Motor Neurone Disease Association branches across Wales, who are made up of volunteers doing a fantastic job of providing local support to people living with MND.


The support and impact of the MND Association is further strengthened by the seamless working together of volunteers and staff as one organisation aiming to make an impact and a difference for people with MND in Wales.


In closing, Deputy Presiding Officer, I am delighted to raise the issue of support for people living with MND in Wales.


As far as I understand it, this is the first debate that has been had specifically on Motor Neurone Disease in the Assembly Chamber – something which goes to show how high up it has been on our agenda.


But that is changing -  and by working collaboratively, as an Assembly; with the Cross Party Group on Neurosciences with the Motor Neurone Disease Association, with GPs and health professionals, and more importantly with people living with MND in Wales, we can start to deliver the right care at the right time for these people.


Motor Neurone Disease is a heart-breaking disease and today’s debate is to really ascertain what challenges people with MND are facing and how we can best work together to support them.


I sincerely hope that the Minister will consider the issues raised this afternoon, when looking at issues such as palliative care and cross-border health services.


I also hope that he will give a real commitment today to support the Motor Neurone Disease campaigns and help make Wales a better place for those living with MND.