Timely support

One week waiting for an assessment or a piece of equipment is like a year in most people’s lives, because they are an everyday essential to help us live as normal a life as possible and die with dignity
– Liam Dwyer, who is living with MND

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

This means timely and appropriate access to:

  • equipment
  • home adaptations
  • wheelchairs and suitable housing
  • support and benefits.

A person with MND can access a number of services and care support within their local authority. This does vary in quality and what is available depending on their location. However, the person has a right to a needs assessment if they appear to require care or support to maintain daily life. Their wishes must be taken into consideration when exploring options to achieve day-to-day goals. Carers should also be offered an assessment by the local authority.

Initially an assessment of their needs will be undertaken and is usually conducted by an appropriately qualified person eg. a social worker. This assessment will highlight any services they can receive and produce an agreed care and support plan. This may include care in the home, or referral to other local support services such as: relevant health professionals, relevant social care professionals, care services and agencies, community palliative care, day therapy units (often linked to hospices) counselling, respite services, financial and benefits advice, useful local or national charities.

Finance

Being diagnosed with a debilitating disease is scary enough without having to worry about the financial impact. As MND progresses, people will need to make adjustments to their life and their home, with often costly effects.

Be sure to talk to the person and their loved ones about their options. Explain that there is help available and that they could visit the MND Association for more details. Benefits and entitlement information is also available.