Table Of ContentLiving With MND:
An evaluation of care pathways available to adults with,
and the families or carers of, adults with Motor Neurone
Disease in Scotland
Jo Ferrie
Phillippa Robertson – Rieck
Nick Watson
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Acknowledgements
This research was commissioned by Motor Neurone Disease Scotland and their financial
sponsorship and administrative backing is gratefully recognised.
We would like to thank all of those who took part in the study. Everybody we spoke to were
prepared to let us into their homes and tell us about their lives and to permit this intrusions while
they were facing numerous problems. Without their honesty, time and commitment we would
not have been able to produce this report.
We would also like to acknowledge the help and collaborative support of Susan Webster, Craig
Stockton and Richard Petty who provided us with very valuable and helpful advice throughout
the research and helped in the drafting of the final report.
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Author Details
Jo Ferrie is a lecturer in the School of Social and Political Sciences at the University of
Glasgow. Previously she was a research fellow in the Strathclyde Centre for Disability Research
and has written extensively on disability and equality and disability and human rights.
Phillippa Robertson Rieck is a research associate in the Strathclyde Centre for Disability
Research where, until recently she was a PhD Student.
Nick Watson is Professor of Disability Research and Director of the Strathclyde Centre for
Disability Research at the University of Glasgow. His previous research has included work on
disabled children and disabled childhoods, disability and technology, disability theory and
disability history.
For further information contact Jo Ferrie:
Main Findings
Motor Neurone Disease (MND) is a progressive condition that damages motor neurones, the
cells that control voluntary muscle activity, in both the spinal cord and the brain. It can cause
difficulty in walking and movement, talking, swallowing and breathing and many muscles in the
body can become affected. To find out what it is like to live with MND from the perspective of
those with the condition we carried out a longitudinal study in which we interviewed 40 people
with MND and their partners a number of times over a two year period. We found that:
Control, or more particularly the lack of it was the overarching theme that occurred
throughout the interviews. People wanted to be consulted, informed and involved in decisions
about their health and their social care and where this happened people were more likely to
report satisfaction with the service.
The diagnosis of MND is a long and protracted process, one that was for many a very
distressing experience. 45% of those we spoke to took over 12 months for a diagnosis, 19%
over 18 months. Participants had difficulty getting professionals to take their symptoms
seriously and once they entered the neurology system many people experienced delays and
often the diagnosis was not confirmed by a neurologist.
Physical access to hospitals was in some cases difficult. Car parking and the location of the
clinic often made it hard for people to get to a hospital appointment.
Health professionals had an important role. Good professionals were those who took time to
create a sense of teamwork with the person with MND and their family. This was less likely
to happen with hospital consultants and where this did not people felt insecure and not
listened to. There was also some evidence of poor communication between professionals and
medical notes were often not shared between different professionals. Where people accessed
general wards they were rarely treated well.
Informal carers provided much of the social care and support for those with MND, with
spouses meeting most of the need. Whilst many people were happy with this arrangement
meeting the need placed a great deal of strain on the families. Many people did not want to
rely on care supplied by outside agencies as they did not trust the quality or the reliability of
the care and neither did they want their home overrun with people.
Housing adaptations and the provision of aids to daily living were for many a great cause
of stress and strain and many people felt that they were not involved in the decision making
process, felt out of control and unable to influence the situation. The rapidly progressive
nature of MND can exacerbate this problem.
Social Care and support provided by local authorities was very heavily criticised. There were
inconsistencies between services, people felt excluded from decisions made about their care
and their care needs and people did not have access to the necessary information to make an
informed choice about which services to access.
Specialist Care Nurses (SCN) played a vital role in the care and support of those with MND.
Not only do they provide help and support directly they also help to act as a champion for the
family and coordinate services and service provision. This service is however under great
strain and there are a significant number of people for whom this service is not working
because the service was too stretched and the resources were not available to allow the SCN
to meet their needs.
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Contents
ACKNOWLEDGEMENTS 2
AUTHOR DETAILS 3
MAIN FINDINGS 4
EXECUTIVE SUMMARY 10
LITERATURE AND RESEARCH DESIGN 17
- Introduction 17
- Health Service Care for People with MND 21
- The Impact of MND on the Family and their Role in the Delivery of Care 23
- The Role of Health and Medical Professionals 25
- Palliative Care and Motor Neurone Disease 26
METHOD 29
- Research Aims and Objectives 29
- Empirical Objectives & Research Questions 29
- Ethics 30
- Confidentiality 31
- The Study 31
- Interview Schedules and Topic Guides 33
- Analysis 34
- Quantum of Recordings and Transcripts Generated by Interviews 35
THE TRIAL OF DIAGNOSIS 37
- Introduction 37
- Findings 37
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- Sample 37
- Time to Diagnosis 38
- Pathways to Diagnosis 38
- Deciding Something is Wrong 41
- Convincing Medical Practitioners that Something is Wrong 44
- Shock of Diagnosis 48
- Distress of Giving a Diagnosis 50
- Bed-Side Manner 51
- Conclusion & Recommendations 54
SPECIALIST CARE NURSES 55
- Introduction 55
- Findings 56
- The Role of the Specialist Care Nurse 56
- Working with the SCN and Building up a Relationship – Someone on our side 59
- Best practice working: Limitations and Barriers 63
- Relationship of SCN with other Family Members 68
- Interactions with other Professionals 70
- Seeing SCN at Consultations 73
- Sources of Support Allied to the SCN 75
- Conclusion & Recommendations 82
ACCESS TO MEDICAL SERVICES 83
- Introduction 83
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- Findings 84
- Accessing Medical Services: Barriers and Inaccessibility 84
- Interactions with General Practitioners 88
- Interactions with Consultants 90
- Experiences of Hospital Stays and the Passing on of Information 93
- PEG Feeding 98
- Conclusion & Recommendations 102
ACCESS TO SOCIAL CARE 103
- Introduction 103
- Findings 104
- Aiding Mobility 104
- Future Proofing the Home 106
- Knowledge of Services Available and of the Needs of Clients 109
- Working with Carers 110
- Providing a Responsive Service 114
- Trust and Consistency in Care 117
- Consistency and Relationship Building in Personal Care 120
- Covering the Cost 121
- Playing the Waiting Game 124
- Conclusion & Recommendations 125
FAMILY AND FRIENDS: CARE AND SUPPORT 126
- Introduction 126
- Findings 127
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- The Impact of MND: Changing Roles 127
- Isolation from Friends and Family 132
- Barriers to Familial Care 134
- Control in Care 138
- Dignity in Care 138
- Physical and Psychological Stress of Caring 140
- Conclusion & Recommendations 145
ACCESS TO INFORMATION 147
- Introduction 147
- Findings 147
- Knowledge about MND 147
- Using the Internet 149
- MND Support Groups 152
- MND Specialist Care Nurses 155
- Information from Other Professionals 155
- Professionals Giving Information on How to Provide Care 158
- Information From Families 159
- Conclusion & Recommendations 163
END OF LIFE 165
- Introduction 165
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- Findings 166
- Facing End of Life 166
- End of Life and the SCN 170
- Controlling End of Life 172
- Conclusion & Recommendations 178
DISCUSSION AND CONCLUSIONS 180
REFERENCES 183
APPENDICES 190
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Executive summary
Background
Motor Neurone Disease (MND), sometimes called Amyotrophic Lateral Sclerosis (ALS) is a
term applied to cover a range of different neurodegenerative syndromes all of which share a
common neuropathology, in particular the progressive degeneration of motor neurones. It is a
terminal condition that can cause a range of symptoms and can affect people’s mobility and their
swallowing, breathing and eating.
Much of the previous research into MND has been preoccupied with a focus on medical issues
and the medical management of the condition including eating, home ventilation and other issues
around the use of services. The voices of those with MND and their immediate family and carers
have frequently been excluded as research has focused on the perspectives of health and social
care professionals.
The overall aim of this project was to try and rectify this gap and to explore the experiences of
those who are diagnosed with MND and their families across Scotland from their own
perspective. We aimed to document their experiences and their perceptions of the diagnostic
procedure, what it was like to live with MND; their views of services they accessed and the
service providers; and of how living with MND affected their social relationships with family,
peers and professionals. We also aimed to examine the role of the providers of care and support
in shaping their experiences, to document examples of good practice and to make
recommendations relevant to policy and practice.
Methods
We set out to ensure that the voices of those with MND and their family and carers were heard
and that the research findings were based on their views and perceptions. We interviewed 40
people with MND and their partner or spouse a number of times over an 18 month period. We
also ran a series of focus groups with people who had cared for or supported a person with MND
who had died. All our research participants were recruited through MND Scotland and were
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