Example letters:

Rt Hon Andy Burnham MP,

House of Commons

London

SW1A 0AA

Dear Mr Burnham,

I am writing to ask you to produce a National Strategy for Motor Neurone Disease (MND).

As you may know, MND is a devastating condition which wrecks lives and kills five people every day in the UK. No national guidance exists to set standards of care for people with MND.  A National Strategy is urgently needed to ensure equity of access to services and to enable people with MND to achieve the highest quality of life possible and to die with dignity in this country.

MND is a fatal, rapidly progressing disease of the brain and central nervous system.  It leaves people locked into a failing body, unable to move, walk or talk.  The mind is usually unaffected.  Half of those with the disease die within 14 months of diagnosis.  There is no cure.

The rapid progression and wide range of symptoms associated with MND mean that the NHS and social services find it challenging to meet the needs of people with MND in a timely and equitable way.

People with MND experience long delays for many facets of their care – diagnosis, wheelchair provision, home adaptations, access to ventilator support, support for their family carer.  In some areas, there is no access to specialist palliative care, co-ordination of care is fragmented and continuing care is being withdrawn because people are ‘improving’.  The human cost of this is enormous.

Without national guidance this unacceptable situation will continue.  A National Strategy on MND is urgently needed to provide health and social care professionals with much-needed advice and direction on appropriate standards of care for people with MND.  This will enable people with MND to achieve a high quality of life and to die with dignity.

Add your personal experience of MND

I call on the Government to urgently produce a National Strategy for MND.

Yours sincerely.

1)                                                                   2)

Norman Lamb MP,                                   Andrew Lansley MP

House of Commons

London

SW1A 0AA

Dear Mr Lamb,

I am writing to ask you to support the call for a National Strategy for Motor Neurone Disease (MND).

As you may know, MND is a devastating condition which wrecks lives and kills five people every day in the UK. No national guidance exists to set standards of care for people with MND.  A National Strategy is urgently needed to ensure equity of access to services and to enable people with MND to achieve the highest quality of life possible and to die with dignity in this country.

MND is a fatal, rapidly progressing disease of the brain and central nervous system.  It leaves people locked into a failing body, unable to move, walk or talk.  The mind is usually unaffected.  Half of those with the disease die within 14 months of diagnosis.  There is no cure.

The rapid progression and wide range of symptoms associated with MND mean that the NHS and social services find it challenging to meet the needs of people with MND in a timely and equitable way.

People with MND experience long delays for many facets of their care – diagnosis, wheelchair provision, home adaptations, access to ventilator support, support for their family carer.  In some areas, there is no access to specialist palliative care, co-ordination of care is fragmented and continuing care is being withdrawn because people are ‘improving’.  The human cost of this is enormous.

Without national guidance this unacceptable situation will continue.  A National Strategy on MND is urgently needed to provide health and social care professionals with much-needed advice and direction on appropriate standards of care for people with MND.  This will enable people with MND to achieve a high quality of life and to die with dignity.

Add your personal experience of MND

I ask you to support the call for a National Strategy for MND.

Yours sincerely.