Providing medical evidence for benefit applications
People with motor neurone disease (MND) may apply for disability/employment benefits. Some applications require a health and social care professional to provide medical evidence on their behalf.
This information is for GPs, neurologists and the wider health and social care team, who may be asked to provide medical evidence to support a claim.
It also explains how, when a diagnosis of MND has been confirmed, the ‘Special Rules for terminal illness’ can be used to fast-track claims for the following benefits:
- Attendance Allowance (AA)
- Personal Independence Payment (PIP - the benefit that has replaced Disability Living Allowance for new and some existing claimants)
- Disability Living Allowance (DLA - reassessments for claimants who were 65 or over on 8 April 2013)
- Employment and Support Allowance (ESA).
The disability/employment benefits system is complex. Whatever the award being applied for, you can help to reduce stress for people with MND when called upon to provide medical evidence for an application.
‘Sometimes, our new patients don’t know that they entitled for these benefits. In our clinics I always advise our patients to apply for them as soon as possible, and help them to do so.’ Gitana, MND Coordinator
Full and accurate medical evidence can make a big difference to a claim. It can:
- speed up the process of the claim, helping to ensure it is dealt with quickly and with a greater chance of success
- reduce the potential stress of claiming benefits for the person with MND
- potentially avoid the person having to have further medical assessment, which may be conducted by people with little experience of MND.
1. Provide detailed, up-to-date evidence
Disability benefit claims from people with MND are often refused or awarded a lower rate than would normally be expected because insufficient or conflicting medical evidence has been provided.
It is critical that the medical evidence adequately reflects the person’s current situation, and is descriptive and explicit about their mobility/care needs, confirming the progressive nature of their symptoms. It should take account of unpredictability, fatigue, time taken to complete an action and the after effects of carrying out the task.
Medical evidence must focus on how MND affects the individual, and not simply be a general description of what MND symptoms include.
2. Consider your wording
The wording used on a claim form is crucial to whether or not a benefit is awarded. The following examples illustrate the degree of detail we’d recommend.
Example with not enough detail: Mr X has lower limb weakness and needs help with walking.
Replace with: Mr X has lower limb weakness and can only walk 20 yards, with assistance. His ability to walk is further limited by extreme fatigue and he needs to stop and rest for ten minutes afterwards, as he finds it very painful and tiring.
Example with not enough detail: Mrs Y has upper limb weakness and needs help with dressing.
Replace with: Mrs Y is unable to dress without assistance. Even with help it takes an hour to dress. Mrs Y needs to stop for rests continually, as it is very tiring for her and causes pain in her arms and shoulders.
3. Provide the best contact details
With an application for Personal Independence Payment, Attendance Allowance or for a reassessment of Disability Living Allowance, the person with MND will be asked for the contact details of a person who can provide additional evidence. We would advise you to encourage the person with MND to provide the name of the care centre coordinator at their MND care centre, if relevant, or the name of their specialist nurse or consultant at their neurological clinic.
4. Use the Special Rules for terminal illness and DS1500 form
If someone with MND is applying for Attendance Allowance, Personal Independence Payment, Employment and Support Allowance or for a reassessment of Disability Living Allowance, they may be fast-tracked and considered for benefits under the ‘Special Rules for terminal illness’ provisions.
GPs, neurologists and specialist nurses can help by completing form DS1500 to show the person with MND is eligible for these rules.
The person with MND may have their application fast-tracked under the Special Rules during the initial phone call they make to enquire about Personal Independence Payment. They should tell the call handler at this stage that they want this to be considered as a Special Rules case. They will be asked whether they already have or are going to get a DS1500 form, and will be asked to send it in. The claim will then be completed.
In order to satisfy the special rules provisions fully, the person must be terminally ill. Legislation defines that: ‘a person is “terminally ill” at any time if at that time the person suffers from a progressive disease and the person’s death in consequence of that disease can reasonably be expected within six months.’
MND is a terminal, rapidly progressive disease. As a result, people with MND will pass the diagnosis element of Special Rules on the DS1500 form, as it is a terminal condition. However, the prognosis element can be problematic.
It is important to remember that MND is unpredictable. The DS1500 form only asks if there is a reasonable expectation that their prognosis could be six months. It does not mean that someone is going to die within six months, only that it is a possibility.
A claimant who successfully applies through Special Rules can usually continue to claim for up to three years before reassessment.
A third of people with MND die within a year of diagnosis and more than half die within two years.
The MND Association strongly recommends that a Special Rules application using form DS1500 should be actively considered in all cases involving MND. There may be an exception where MND presents with noticeably slow progression or limited symptoms.
As the six month prognosis is a guideline only, there is no sanction on any health or social care professional who has declared someone terminally ill, should that person live beyond the six month period.
Delays mean that someone may be living without any kind of financial support for many months.