Motor Neurone Disease (MND)

Ensuring early diagnosis and support for those living with MND remains a key priority of the NHS.

With early diagnosis key to treating the symptoms of MND, I am glad that the National Institute for Health and Care Excellence (NICE) has published new guidelines for clinicians on the assessment and management of MND. These set out the signs and symptoms of the disease, and recommend that patients suspected of having MND should be referred without delay. The Royal College of GPs and the MND Association have also worked together to produce a 'Red Flag Tool' which sets out key signs of MND to help GPs to identify suspected cases and ensure prompt referral.

All services for people with MND should be commissioned in line with NHS England's neurosciences service specification which sets out what providers must have in place to deliver high quality specialised neurological care. MND care is part of the NHS's specialised services. You may like to know that the budget for these services has increased more rapidly than other parts of the NHS, to £16.6 billion for the year 2017/18.

I also recognise the valuable contribution made by carers of people with MND, many of whom spend a significant proportion of their life providing support to family members, friends and neighbours. I agree that carers must receive the right support to help them carry out their caring roles and a new cross-Government National Carers Strategy is being introduced to look at what more can be done to support existing and future carers.

Motor Neurone Disease (MND) is a terrible condition and I believe it is crucial that people who suffer from terminal conditions like MND should receive as much support as possible. That is why I support a benefits system which reduces stress and anxiety for people with terminal illnesses. 

The Special Rules for Terminal Illness (SRTI) procedure helps to deliver this goal by allowing people with terminal illnesses to be fast-tracked for welfare support without the need for face-to-face assessment. There are, however, safeguards in place to ensure that everyone is treated fairly, including people with MND. 

Constituents have raised concerns that the SRTI requires a ‘reasonable expectation of death within six months'. Given how unpredictable terminal conditions such as MND can be, there is some flexibility in the eligibility criteria for SRTI. Medical professionals are asked what they believe to be a 'reasonable' expectation of how long someone is expected to live. The six month rule is very much a guideline, and medical professionals do not face any punishment if the patient lives longer than six months. Someone who lives longer than six months will still be able to receive their benefit and will not need to be reassessed until up to three years after their initial claim.  

Sadly, a third of people suffering from MND pass away within a year of their diagnosis and over half within two years. But people with MND who are expected to live significantly longer than six months will have to go through the work capability assessment process. Under these circumstances, they would be able to be covered by the Severe Conditions Criteria which would usually exempt them from from further face-to-face reassessments.