News & Events
National Audit Report raises concerns in end of life care
26 November 2008
A new report published by the National Audit Office (NAO) today states that end of life care services are not meeting the basic needs of many people approaching the end of their life.
Whilst most people wish to be cared for and die at home the vast majority of deaths occur in hospital. The report claims that by reducing the amount of time people spend in hospital unnecessarily it could make resources available to support them more effectively at home.
The Motor Neurone Disease (MND) Association believes that it is vital that people living with MND are able to remain in control of their care and that specialist palliative care is introduced from diagnosis. Five people a day die from MND and too many of them spend their final days in hospital contrary to their wishes.
The report outlines how the issue of people approaching the end of their life is complex and requires a combination of health and social care services provided in the community, hospitals, care homes or hospices.
The MND Association agrees with the report that the coordination between health and social care services in relation to the planning, delivery and monitoring of end of life care is generally poor and hampered by different funding streams.
It is the urgent need for coordination of services that has provided the impetus for the Association to create a Year of Care Pathway, an innovative new guide to commissioning aimed at helping the NHS and Social Services improve the commissioning and provision of services and equipment for people with MND.
The MND Association’s Year of Care Pathway was cited as an example in the report of a ‘condition specific initiative’ to improve end of life care. For the first time ever, the Year of Care pathway lists all the possible care and equipment needs that a person with MND may have over a 12 month period. By attaching a cost to each element, commissioners of services in the NHS will be able to plan and deliver services more effectively for the benefit of people with MND.
The total cost of services and equipment in the last year of MND patient’s life is estimated at around £200,000, including £83,000 for equipment and adaptations. This figure does not include the cost of high dependency care homes, estimated to cost £65,000 and the cost of informal care, estimated at £36,000.
Research by the MND Association was also included in the report that estimated in the last year of life each person with MND receives informal care which would cost £101,000 to provide professionally. The report recognised that care is provided by informal carers such as family members, close friends or volunteers and that they should be provided with more support.
The Association hopes this will result in an increase in funding and change in policy to afford people dignity in death. The Association also wants to see meaningful recognition of the complexities involved in end of life care and the need for a personalised patient focused approach.
Jean Waters was diagnosed with MND in July 2004 says: “Death should be allowed to happen with dignity and I would want to die happy in the knowledge that my family are being advised and supported by people who fully understand what is happening and can guide them through a difficult time.”
Whilst most people wish to be cared for and die at home the vast majority of deaths occur in hospital. The report claims that by reducing the amount of time people spend in hospital unnecessarily it could make resources available to support them more effectively at home.
The Motor Neurone Disease (MND) Association believes that it is vital that people living with MND are able to remain in control of their care and that specialist palliative care is introduced from diagnosis. Five people a day die from MND and too many of them spend their final days in hospital contrary to their wishes.
The report outlines how the issue of people approaching the end of their life is complex and requires a combination of health and social care services provided in the community, hospitals, care homes or hospices.
The MND Association agrees with the report that the coordination between health and social care services in relation to the planning, delivery and monitoring of end of life care is generally poor and hampered by different funding streams.
It is the urgent need for coordination of services that has provided the impetus for the Association to create a Year of Care Pathway, an innovative new guide to commissioning aimed at helping the NHS and Social Services improve the commissioning and provision of services and equipment for people with MND.
The MND Association’s Year of Care Pathway was cited as an example in the report of a ‘condition specific initiative’ to improve end of life care. For the first time ever, the Year of Care pathway lists all the possible care and equipment needs that a person with MND may have over a 12 month period. By attaching a cost to each element, commissioners of services in the NHS will be able to plan and deliver services more effectively for the benefit of people with MND.
The total cost of services and equipment in the last year of MND patient’s life is estimated at around £200,000, including £83,000 for equipment and adaptations. This figure does not include the cost of high dependency care homes, estimated to cost £65,000 and the cost of informal care, estimated at £36,000.
Research by the MND Association was also included in the report that estimated in the last year of life each person with MND receives informal care which would cost £101,000 to provide professionally. The report recognised that care is provided by informal carers such as family members, close friends or volunteers and that they should be provided with more support.
The Association hopes this will result in an increase in funding and change in policy to afford people dignity in death. The Association also wants to see meaningful recognition of the complexities involved in end of life care and the need for a personalised patient focused approach.
Jean Waters was diagnosed with MND in July 2004 says: “Death should be allowed to happen with dignity and I would want to die happy in the knowledge that my family are being advised and supported by people who fully understand what is happening and can guide them through a difficult time.”
