READING EAST MP Matt Rodda has been made aware of the increasingly significant challenges faced by people with Motor Neurone Disease (MND) when going through the process for Personal Independence Payment (PIP) assessment.

MND is a progressive disease involving degeneration of the motor neurons and wasting of the muscles. It is life-shortening and there is no cure, and MND affects around 5,000 adults in the UK at any one time. As MND is not a common disease, general health and social care processionals may not see many cases of it during the course of their careers. This is a barrier to those with MND as it may be their needs are not fully understood nor met.

People living with MND do not need the added worry of finances or navigating a very complex benefits system. We have a benefits system which is clearly failing Motor Neurone Disease sufferers, and delays in getting access to the right amounts of benefit can and does cause significant distress.

A recent inquiry by an All Party Parliamentary Group (APPG) focusing on MND has found that:
• over half (56%) of people with MND were called for a face-to-face assessment for PIP, despite guidance from the Department for Work and Pensions (DWP) that people with MND should ‘not normally’ be called for such an assessment.
• 57% of people with MND said that their Benefits Assessor did not show sufficient understanding of MND.
• 42% of people with MND said that they were ‘moderately dissatisfied’ or ‘very dissatisfied’ with the assessment process.

For people living with a complex and severe health condition such as MND, PIP is a vital source of support, providing financial payments as well as access to subsidised mobility vehicles for claimants with higher mobility support needs. PIP was introduced to replace Disability Living Allowance (DLA) in 2013, and is due to have replaced it for the majority of claimants by mid-2019. PIP will therefore be the primary benefit for people living with disability and ill-health for the foreseeable future, and it is essential that the system works effectively for people living with MND. Research published by Demos1 in 2017 found that MND costs individuals an extra £1,000 a month before loss of earnings, and therefore access to benefits like PIP is therefore vital in mitigating the financial impact of the disease.

An APPG report, compiled with the help of the MND Association recommends that
the DWP should:
• clarify and improve the information provided to claimants on the provision of further evidence;
• work with the Department of Health and its counterparts in the devolved administrations to incentivise and support health professionals to engage in providing evidence for PIP claims;
• review its guidance to assessment providers to ensure evidence of carers and family members is given sufficient weight during the assessment process;
• review its guidance around the use of DS1500 to reflect the variable nature of terminal conditions and ensure that people living with terminal conditions such as MND are not excluded, with particular reference to the ‘reasonable expectation’ of death within six months; and
• update its guidance for assessors to emphasise that staff are not entitled to challenge the validity of a DS1500 form signed by a health professional.

Matt said:
“People living with Motor Neurone Disease should be able to get the support that they desperately need in order to allow them to have some independence.

“I hope that the DWP listens to the report findings highlighted by the MND Association, and takes on board the suggested actions to provide a smoother application process for those living with MND. Living with MND must be challenging enough as it is, without those sufferers having to live in a financial crisis too. I fully support the efforts of the MND Association to bear pressure on the Government to ease the burden on MND sufferers at a time when they need care, compassion and understanding.”