This report sets out the challenges people with motor neurone disease (MND) currently face in getting support with home adaptations to enable them to live independently and safely in their own homes. It brings together data from an engagement project including face-to-face sessions and surveys of people with MND and professionals, freedom of information request (FOI) responses and a review of policy and literature on home adaptations. It highlights the support schemes like the Disabled Facilities Grant (DFG) can provide to people who need to adapt their homes, and problems in policy and delivery that can make the scheme difficult to access. A lack of information about what help is available for home adaptations, what to expect from the process and who to talk to can also add to difficulties for people with MND, their families and carers. The report also found there are significant differences in the services provided by authorities across England, Wales and Northern Ireland, with varying levels of funding available and no nationally agreed response timescale. As well as highlight these issues, the report also celebrates some examples of good practice. The report makes recommendations for national and local governments in England, Wales and Northern Ireland to ensure adequate funding for the Disabled Facilities Grant, reduced waiting times for adaptations and accessible information and advice.
(Edited publisher abstract)
This report sets out the challenges people with motor neurone disease (MND) currently face in getting support with home adaptations to enable them to live independently and safely in their own homes. It brings together data from an engagement project including face-to-face sessions and surveys of people with MND and professionals, freedom of information request (FOI) responses and a review of policy and literature on home adaptations. It highlights the support schemes like the Disabled Facilities Grant (DFG) can provide to people who need to adapt their homes, and problems in policy and delivery that can make the scheme difficult to access. A lack of information about what help is available for home adaptations, what to expect from the process and who to talk to can also add to difficulties for people with MND, their families and carers. The report also found there are significant differences in the services provided by authorities across England, Wales and Northern Ireland, with varying levels of funding available and no nationally agreed response timescale. As well as highlight these issues, the report also celebrates some examples of good practice. The report makes recommendations for national and local governments in England, Wales and Northern Ireland to ensure adequate funding for the Disabled Facilities Grant, reduced waiting times for adaptations and accessible information and advice.
(Edited publisher abstract)
Subject terms:
motor neurone disease, home adaptations, access to services, disabilities, independent living, policy, grants, local authorities, financing;
The key findings from a survey of over 1,300 people living with motor neurone disease (MND) and their carers on their experiences of receiving care or looking after someone living with MND. The report presents findings across the five areas of healthcare, social care, diagnosis, costs and communication, equipment and voice banking. The survey found that the support offered by social care for people with MND is perceived as consistently worse than health care. Problems identified included that only 45 percent of people know how to access an advocate, over half of those surveyed did not have a personal care plan, and only 38 percent of carers had received a carers assessment or are in the process of being assessed; and that key equipment and home adaptation needs for people with MND that are not sufficiently funded by the NHS or Social Services.
(Edited publisher abstract)
The key findings from a survey of over 1,300 people living with motor neurone disease (MND) and their carers on their experiences of receiving care or looking after someone living with MND. The report presents findings across the five areas of healthcare, social care, diagnosis, costs and communication, equipment and voice banking. The survey found that the support offered by social care for people with MND is perceived as consistently worse than health care. Problems identified included that only 45 percent of people know how to access an advocate, over half of those surveyed did not have a personal care plan, and only 38 percent of carers had received a carers assessment or are in the process of being assessed; and that key equipment and home adaptation needs for people with MND that are not sufficiently funded by the NHS or Social Services.
(Edited publisher abstract)
Subject terms:
surveys, motor neurone disease, carers, health care, social care provision, diagnosis, costs, home adaptations, assistive technology, user views;
This audit tool aims to help health and social care professionals working with people with Motor Neurone Disease (MND) to see how well their service meets the standards set out in the NICE guideline on MND (NG42) and plan service improvements. It aims to help benchmark current performance; improve outcomes for MND patients; plan cost-effective service improvements; improve professional practice; and enhance multidisciplinary working and communication. The tool has been developed by the MND Association in collaboration with people living with MND, carers, health and social care professionals. It consists of two parts, an Excel-based clinical audit and a patient experience survey. The output of the tool is a report on the level of current compliance which is provided in the form of a graphical way to feedback results in a visual way. Registration is required to access the tool.
(Edited publisher abstract)
This audit tool aims to help health and social care professionals working with people with Motor Neurone Disease (MND) to see how well their service meets the standards set out in the NICE guideline on MND (NG42) and plan service improvements. It aims to help benchmark current performance; improve outcomes for MND patients; plan cost-effective service improvements; improve professional practice; and enhance multidisciplinary working and communication. The tool has been developed by the MND Association in collaboration with people living with MND, carers, health and social care professionals. It consists of two parts, an Excel-based clinical audit and a patient experience survey. The output of the tool is a report on the level of current compliance which is provided in the form of a graphical way to feedback results in a visual way. Registration is required to access the tool.
(Edited publisher abstract)
Subject terms:
motor neurone disease, performance evaluation, standards, user views, interagency cooperation, communication, health care, social care provision;
This report presents the views of carers of people with motorneuronedisease (MND), MND Association staff and volunteers on how support for carers needs to be improved. It describes what it is like to care for someone with MND and looks at carers’ experiences of support, the financial challenges they face and the extent to which they feel valued and respected for the role they perform. Caring
(Edited publisher abstract)
This report presents the views of carers of people with motorneuronedisease (MND), MND Association staff and volunteers on how support for carers needs to be improved. It describes what it is like to care for someone with MND and looks at carers’ experiences of support, the financial challenges they face and the extent to which they feel valued and respected for the role they perform. Caring for someone with MND can be an extremely intense, exhausting and lonely experience. Over half of carers of people with MND provide over 100 hours of care per week. By comparison, 38 per cent of carers overall provide that level of care. The report highlights the common issues carers experience, both in receiving support to meet their own needs and getting help to arrange care for the person they are caring for: some carers go without support; carers aren’t getting carers assessments at the right time; support and services don’t match needs; there are real problems with respite care; children and young people affected by MND need specific support; there is very little support for carers after bereavement; problems in arranging care for people with MND has a significant negative impact on carers; caring for someone with MND can have a significant impact on earnings, savings and future financial security; work is very important to some carers, but employers are not always aware of what it means to be a carer. The report presents a range of recommendations around practical support, financial support and valuing carers, calling for the creation of a universal offer of free, non-means tested support for carers while performing their caring role and after bereavement; the creation of a system of financial and employment support that ensures carers do not experience hardship or poverty as a result of their caring role; and working towards a society where recognising, valuing and supporting carers is everyone’s responsibility.
(Edited publisher abstract)
Subject terms:
motor neurone disease, carers, carers assessment, care plans, user views;
A guide providing information and advice for carers supporting people with Motor Neurone Disease (MND). The guide covers practical support, emotional and personal support and details about where carers can seek further help. The first part of the guide looks at the caring role and includes information on carer's rights, getting a carer's assessment, and the support and services that are available for carers. Part two covers emotional and personal support and explores the varied reactions carers may experience and how to manage them. It also covers supporting children and young people who are close to the person with Motor Neurone Disease or are involved in caring and adjusting to life after the caring role has ended. The final parts of the guide provide additional information about services, publications and useful organisations. Notes pages are also included to help carers record important information and plan for the future. Quotations from carers who have been supporting someone with Motor Neurone Disease are included throughout. The guide will be useful for both unpaid carers and professionals looking to support them in their caring role.
(Edited publisher abstract)
A guide providing information and advice for carers supporting people with Motor Neurone Disease (MND). The guide covers practical support, emotional and personal support and details about where carers can seek further help. The first part of the guide looks at the caring role and includes information on carer's rights, getting a carer's assessment, and the support and services that are available for carers. Part two covers emotional and personal support and explores the varied reactions carers may experience and how to manage them. It also covers supporting children and young people who are close to the person with Motor Neurone Disease or are involved in caring and adjusting to life after the caring role has ended. The final parts of the guide provide additional information about services, publications and useful organisations. Notes pages are also included to help carers record important information and plan for the future. Quotations from carers who have been supporting someone with Motor Neurone Disease are included throughout. The guide will be useful for both unpaid carers and professionals looking to support them in their caring role.
(Edited publisher abstract)
Subject terms:
carers, motor neurone disease, young carers, rights, carers assessment, wellbeing, bereavement, access to services;
Reports on the findings of a survey of carers of people living with Motor Neuron Disease (MND) in order to better understand what it's like to be a carer for people living with MND and to highlight carers' concerns. A questionnaire was sent to 1,544 people on the MND Association database and an online questionnaire was also posted on the MND Association website during March and April 2015. The report is based on questionnaires from 452 respondents, 336 received by post and 116 submitted online. Findings are discussed in the following areas: being a carer; support from health and social care services; MND Association services; and about you, which captured key demographic data about the respondents. Findings include: that over half of carers who responded spent more than 100 hours per week caring; 19% are not in work because of their caring role; almost two thirds of carers don’t receive any benefits or allowances; and more than a third of carers were unaware of their right to a Carer Assessment under the Care Act. The main concern carers had about their role was what would happen if they fall ill and about their ongoing ability to cope. A comparison of the results with MND National Carers’ Survey data published in 2013 is included.
(Edited publisher abstract)
Reports on the findings of a survey of carers of people living with Motor Neuron Disease (MND) in order to better understand what it's like to be a carer for people living with MND and to highlight carers' concerns. A questionnaire was sent to 1,544 people on the MND Association database and an online questionnaire was also posted on the MND Association website during March and April 2015. The report is based on questionnaires from 452 respondents, 336 received by post and 116 submitted online. Findings are discussed in the following areas: being a carer; support from health and social care services; MND Association services; and about you, which captured key demographic data about the respondents. Findings include: that over half of carers who responded spent more than 100 hours per week caring; 19% are not in work because of their caring role; almost two thirds of carers don’t receive any benefits or allowances; and more than a third of carers were unaware of their right to a Carer Assessment under the Care Act. The main concern carers had about their role was what would happen if they fall ill and about their ongoing ability to cope. A comparison of the results with MND National Carers’ Survey data published in 2013 is included.
(Edited publisher abstract)
Subject terms:
carers, user views, motor neurone disease, access to services, social care provision, health care;
In March 2014, HMIC published 'Everyone’s business: improving the police response to domestic abuse, which found significant weaknesses in the service provided to victims of domestic abuse. This thematic report presents the national findings on how effectively the police service are carrying out their duty to protect victims of domestic violence following the report's recommendations. The report draws inspections in carried out between June and August 2015, 480 case files, 11 focus groups attended by over 60 victims of domestic abuse, a survey of 450 domestic abuse practitioners; and attendance at Multi-agency Risk Assessment Conferences (MARACs). Chapters include: responding to victims of domestic abuse; specialist domestic violence teams; and working in partnership to protect victims from harm, including MARACs and MASHs. The report shows that the police service now views tackling domestic abuse as an important priority, which is resulting in better support for and protection of victims. Areas in need of improvement include: training for all police officers and staff to understand and identify the dynamics of abuse and coercive control; improvement in understanding of the nature and scale of domestic abuse across their areas; ensuring the quality of service offered to victims assessed as standard and medium risk meets that provided to victims assessed as high risk; and, ensuring that partnership working arrangements (which are crucial to providing coherent support) are effective, and evaluate how far they result in positive outcomes for victims. Annex A provides the 11 recommendations from 2014 HMIC inspection report 'Everyone’s business: improving the police response to domestic abuse'.
(Edited publisher abstract)
In March 2014, HMIC published 'Everyone’s business: improving the police response to domestic abuse, which found significant weaknesses in the service provided to victims of domestic abuse. This thematic report presents the national findings on how effectively the police service are carrying out their duty to protect victims of domestic violence following the report's recommendations. The report draws inspections in carried out between June and August 2015, 480 case files, 11 focus groups attended by over 60 victims of domestic abuse, a survey of 450 domestic abuse practitioners; and attendance at Multi-agency Risk Assessment Conferences (MARACs). Chapters include: responding to victims of domestic abuse; specialist domestic violence teams; and working in partnership to protect victims from harm, including MARACs and MASHs. The report shows that the police service now views tackling domestic abuse as an important priority, which is resulting in better support for and protection of victims. Areas in need of improvement include: training for all police officers and staff to understand and identify the dynamics of abuse and coercive control; improvement in understanding of the nature and scale of domestic abuse across their areas; ensuring the quality of service offered to victims assessed as standard and medium risk meets that provided to victims assessed as high risk; and, ensuring that partnership working arrangements (which are crucial to providing coherent support) are effective, and evaluate how far they result in positive outcomes for victims. Annex A provides the 11 recommendations from 2014 HMIC inspection report 'Everyone’s business: improving the police response to domestic abuse'.
(Edited publisher abstract)
Motor neurone disease (MND) was initially believed to affect only the motor system of patients. It is not uncommon to read or hear statements such as ‘the intellect is spared in MND’ or ‘don’t worry, the mind is intact, just the body is affected’. However, recent advances have revealed changes in the frontal and temporal areas of the brain that affect thinking and behaviour in MND. It is evident that patients, and particularly carers, would like more information regarding these changes. This A4 booklet aims to help health and social care professionals to support people affected by MND, and their families and carers, should changes to thinking and behaviour occur during the course of the disease.
Motor neurone disease (MND) was initially believed to affect only the motor system of patients. It is not uncommon to read or hear statements such as ‘the intellect is spared in MND’ or ‘don’t worry, the mind is intact, just the body is affected’. However, recent advances have revealed changes in the frontal and temporal areas of the brain that affect thinking and behaviour in MND. It is evident that patients, and particularly carers, would like more information regarding these changes. This A4 booklet aims to help health and social care professionals to support people affected by MND, and their families and carers, should changes to thinking and behaviour occur during the course of the disease.
Subject terms:
motor neurone disease, carers, diseases, families, health care;
This care pathway has been developed to help the NHS and Social Services improve the provision of services for people with Motor Neurone Disease (MND). It lists the care and equipment needs that a person with MND may have over a 12 month period. Costs have also been attached to each element to help commissioners of services plan and deliver services more effectively. The pathway is in the form of a chart, with one axis listing stages of loss of function and the other axis listing the services and staff involved in the care of people with MND. It has been developed in collaboration with Leeds PCT and Leeds Adult Social Care. Commissioners, healthcare professionals and patients.
This care pathway has been developed to help the NHS and Social Services improve the provision of services for people with Motor Neurone Disease (MND). It lists the care and equipment needs that a person with MND may have over a 12 month period. Costs have also been attached to each element to help commissioners of services plan and deliver services more effectively. The pathway is in the form of a chart, with one axis listing stages of loss of function and the other axis listing the services and staff involved in the care of people with MND. It has been developed in collaboration with Leeds PCT and Leeds Adult Social Care. Commissioners, healthcare professionals and patients.
Subject terms:
intervention, long term conditions, NHS, motor neurone disease, social care provision, care pathways, care planning, commissioning, costs;
The Motor Neurone Disease (MND) Year of Care Pathway Commissioning Tool was originally developed with health and social care professionals and people with MND and their carers in the London Borough of Wandsworth. The tool is aimed at commissioners of health and social care services help them improve the provision of services to people with MND. This document reports on a project to refine and validate the tool in Leeds before its launch in 2008. It provides an overview of the care pathway tool, looks at how it can help provide costing information and summarises what people with MND and their carers in Leeds thought about services. The MND then outline their hopes for the tool and how they plan to promote its uptake.
The Motor Neurone Disease (MND) Year of Care Pathway Commissioning Tool was originally developed with health and social care professionals and people with MND and their carers in the London Borough of Wandsworth. The tool is aimed at commissioners of health and social care services help them improve the provision of services to people with MND. This document reports on a project to refine and validate the tool in Leeds before its launch in 2008. It provides an overview of the care pathway tool, looks at how it can help provide costing information and summarises what people with MND and their carers in Leeds thought about services. The MND then outline their hopes for the tool and how they plan to promote its uptake.
Subject terms:
long term conditions, motor neurone disease, user views, carers, care pathways, care planning, commissioning, costs, end of life care;