Meeting the needs of people with MND Exploring ways to work with social services 28 th October 2011

What is Motor Neurone Disease ? Motor neurone disease (MND) is a fatal, neurological disease that kills five people in the UK every day. Today there are 5,000 people living with MND in this country. Life expectancy from diagnosis is two to five years, and around half of those die within 14 months. MND is a fatal, neurological disease that affects the brain and spinal cord. MND leaves people trapped in a failing body unable to walk, talk or feed themselves.

What is Motor Neurone Disease ? The nature of the disease can leave individuals emotionally and physically isolated. It can affect any adult at any age. There is no cure and we do not know the cause of MND in 95% of cases. Few diseases are as devastating as MND Many doctors tell us that it is the diagnosis they struggle most with

Vision: A World free from MND Provides Information, Advice, Financial Support & Equipment Funds and promotes research Relies on voluntary donations

Are services able to meet the challenge of MND? Speed of progression Co-ordinated services - 18 professionals Preventing the preventable Enabling people with MND to make informed choices Low Prevalence - Low Awareness

People with MND and social care policy & practice Care Packages Assessment Criteria Respite Charging policies Transition to continuing health care Variable practice Waiting times Housing DFG Equipment Making personalisation work for people with MND

Background to financial support & equipment loan services  MNDA developed this service in response to dire need  Five times more applications approved last year than three years ago  Statutory services are less able to provide funding o “Victims of our own success” o Seen as a route for getting funding quickly  Need for our services continues to increase but model of delivery unchanged  New dedicated financial support team, policy & process

Financial support payments for the last four years

Equipment loan  We provide o Riser/recliner chairs o Light writers o Assistive communication technology (Ability Net) o Suction units  BUT – this is under review

Financial support  Financial support – formalising what we have been doing o Financial support policy o Clearer application form o Guidance for health and social care professionals and people living with MND o Statutory services being held to account o Re-negotiation of supplier contracts & preferred supplier lists o Better communication with people living with MND o Feedback from people with MND

Proposed recipient has been given a diagnosis of MND or Kennedy’s disease and is resident in England, Wales or Northern Ireland A health or social care professional has carried out an assessment which has identified a need for the equipment or service A request application form has been fully completed Other sources of funding have been thoroughly explored by the referring professional Equipment has not been provided by statutory services or it is anticipated that there would be an unacceptable delay in provision. The equipment is not otherwise available through the Association’s Equipment Loan service Previous financial support to the person living with MND will be taken into consideration Criteria for accessing financial support

Retrospective funding Funeral and legal costs Emergency, for admission and discharge, healthcare needs e.g. head support / collar, respiratory equipment Counseling services Purchase of standard technological aids and support hardware (e.g. computer, laptops, ipads Rental of specialist technological aids and support hardware e.g. alarms / telecare Purchase of beds or specialist mattresses Essential care and access house adaptations such as ramps and shower seats (statutory services obligations) Purchase of hoist / lifting equipment (statutory service obligation) Exclusions for accessing financial support

Next Steps - How can we work with social services and local authorities more generally? Information provision Education & training offering Membership offering Reciprocal arrangements - more formal arrangements with LAs Co-production of services Joint funding Developing the market Joint procurement arrangements

Any questions? Contact details David Hanson Campaigns and Development Manager Mitali Begum Business Development Manager