meeting the needs of people with mnd exploring ways to work with social services 28 th october 2011

Meeting the needs of people with MND

Exploring ways to work with social services

28th 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 fundingo “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 provideo Riser/recliner chairso Light writerso Assistive communication technology (Ability Net)o Suction units

BUT – this is under review

Financial support

Financial support – formalising what we have been doingo Financial support policyo Clearer application formo Guidance for health and social care professionals and

people living with MNDo Statutory services being held to accounto Re-negotiation of supplier contracts & preferred supplier listso 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

david.hanson@mndassociation.org

Mitali Begum

Business Development Manager

mitali.begum@mndassociation.org