ACKNOWLEDGEMENTS
We wish to thank the following organisations for their co-operation with this
research: Action for Dysphasic Adults, Alzheimer’s Disease Society, ANT
Society, Association for Spina Bifida and Hydrocephalus, BASIC, British Brain
and Spine Foundation, British Epilepsy Association, CANDID, Charcot Marie
Tooth Association, Different Strokes, Dystonia Society, Friedreich’s Ataxia
Group, Huntington’s Disease Association, International Autistic Research
Organisation, ME Association, Migraine Action Association, Motor Neurone
Disease Association, Multiple Sclerosis Society, Muscular Dystrophy
Campaign, Myasthenia Gravis Association, National Meningitis Trust,
Neurofibromatosis Association, Neuropathy Trust, Sarah Matheson Trust,
Scope, Stroke Association, Tourette Syndrome (U.K.) Association, and the
Parkinson’s Disease Society.
We would also like to record our appreciation of the help provided by
Caroline Rand, Abdul Razak and Ben Jones of Liverpool Health Authority, Dr
Katy Gardner Princes Park Health Centre, Sam Semoff Toxteth Health and
Community Care Forum, the Health Link Workers, Guy Soulsby, Alison Leak
and Mei Yui of Liverpool Social Services, Eunice Khan and Brian Hartgen of
the RNIB, Carmel Smith Sefton Social Services / Walton centre, Margaret
Harding Walton centre, Afrah Qassim, Faiza Alasaly, Yasmin Ismail, Sue Xiao,
Annie Ho, Mu Fun Lau, Sirad Elmi, and Sheila Scott of North Mersey
Community (NHS)Trust, and all those organisations who took the time to
complete the questionnaires.
In addition thanks are due to Dr Ian Williams of the North West Clinical
Neuroscience Project for his expert advice on the Neurological Conditions
and Symptoms mind maps.
The use of neurological services by BME communities -–final report / Icarus December 042
Special thanks are also due to those individuals who agreed to be
interviewed to provide insights into the experience of people who have been
diagnosed as having a neurological condition.
The invaluable contribution of Louise Cooke who undertook much of the work
on the interim report (April 2000) is fully acknowledged.
Finally we would like to thank those staff and volunteers of the Glaxo
Neurological Centre who have helped with this study and in particular the
support and assistance given by Maureen Kelly, Brian Simpson, Andrew
Lynch and Desmond Chow.
Paul Kyprianou and Maria Byrne-McCann
Icarus December 2004
ICARUSGostin House32-36 Hanover StreetLiverpool L1 4LNTel/Fax 705 3000 e-mail: [email protected]
The Glaxo Neurological Centre wishes to record its appreciation for the
financial assistance provided by the National Lottery Charities Board in
funding this research
The use of neurological services by BME communities -–final report / Icarus December 043
CONTENTS
Page
Acknowledgements 2
Executive Summary 5
Introduction 9
Interim Study 9
Research Focus 10
Methods used 11
Definitions 12
Research Findings 13
Variations in Incidence Levels 13
Ethnic monitoring 18
Access to Services 20
Barriers to access 22
Positive Action 29
Evaluation of the Glaxo BME outreach project 37
Conclusion 46
Recommendations 47
Appendix
1. Information about the Glaxo Neurological Centre and the Working
Life Project
2. Neurological Organisations Surveyed and Summary of findings
3. List of Merseyside BME community and voluntary organisations and
agencies surveyed
The use of neurological services by BME communities -–final report / Icarus December 044
4. Glossary of Neurological Terms and Mind-map of conditions and
symptoms
The use of neurological services by BME communities -–final report / Icarus December 045
Executive Summary
i. This report presents the findings of research into the use of
neurological services by Black and minority ethnic (BME) communities.
The Glaxo Neurological Centre commissioned this research, which up-
dates the interim study undertaken in April 2000 and also includes an
evaluation of the Centre’s BME outreach project.
ii. The research has set out to answer four key questions:
1. The first of these is whether there is there evidence of ethnic variation
in the incidence of neurological conditions. The state of knowledge
about this has not developed greatly since the interim report in 2000,
but we can identify more ethnic variation in different neurological
conditions. The main focus of research has been on how genetic
factors may explain such variation, though other factors such as social
class, environment, culture may well have a bearing. Where we can
identify any significant ethnic variation, targeting preventive and other
health services at the ethnic groups concerned may be appropriate
e.g. in the case of CVD / stroke and Asian populations.
2. The second question we have considered is whether there are any
differences in access to neurological services by members of BME
communities as opposed to the general population. The initiation of
current ethnic monitoring of health services creates difficulties in
assessing this, certainly there is an indication of under-representation
in respect of some services based on monitoring data. There is also a
significant amount of anecdotal accounts that strongly suggests this is
the case.
3. The next question we have attempted to answer is what might explain
any such differences. A range of barriers can be identified that impact
on BME groups accessing neurological services and of particular
concern is the extent to which many of these have an enduring nature,
despite of an awareness about their existence over a number of years.
The use of neurological services by BME communities -–final report / Icarus December 046
4. The final question asks what can be done to try to address inequalities
or issues about access by members of BME communities. Here a
number of practical suggestions have been made and there has been
progress in trying to address barriers to access by some of the national
neurological charities, though much still needs to be done.
iii. The Glaxo Centre outreach project has been a positive attempt to
address some of the issues identified in respect of improving access for
BME communities to neurological conditions. The project has had to
overcome a number of difficulties, but has still managed to make an
impact and is generally viewed as a valuable resource. There is
recognition within the Glaxo Centre that the outreach project may need to
change to develop a more integrated approach with other agencies in
meeting the health needs of BME communities.
iv. The inherent difficulties in undertaking outreach work with BME
communities in respect of neurological conditions should be
acknowledged in any planned changes to the present role and
responsibilities of the worker, or other related proposals. An expectation
that this worker is likely to have contact with a significant number of BME
members with neurological conditions is unlikely to be realised. Not
withstanding this it is important to recognise and value the other work
undertaken in networking, training and awareness raising with BME
community organisations, statutory agencies and VCS organisations.
Recommendations
v. In the main the recommendations that were identified in the interim
report have either been achieved or are ‘on-going’. The following
recommendations are made in respect of the Glaxo Neurological Centre,
though they have relevance for other organisations working with people
with neurological conditions.
The use of neurological services by BME communities -–final report / Icarus December 047
vi. To secure funding for the Outreach Worker’s post and to reconsider the
remit of this post.
vii. To explore with Health and Social Services how information about
neurological conditions and ethnicity can be made available to their staff
and how they can provide translated materials for their clients / patients.
This remains a recommendation that was identified in the interim report
as it has not been a high enough priority within Health and Social Services
viii. To examine the most practicable arrangements for ensuring the Centre
has on-going access to interpreting services, (at present it has a limited
budget).
ix. To further develop and strengthen relationships with organisations and
groups representing Black and minority ethnic groups across the rest of
Merseyside and to work with them to further explore the most effective
ways of promoting its services to these communities and to the dispersed
asylum seeker population. MAAN, the Somali Mental Health Project would
be one example, as in this community stigma is attached both to mental
illness and neurological illnesses. Also to continue to develop partnerships
with other neurological organisations and statutory bodies. Time
constraints have to date meant that the focus of the work has been only
in Liverpool
x. To organise information and basic training for appropriate staff and
volunteers working with Black and minority ethnic groups; still on-going
xi. To organise cultural awareness training for staff and members of each
national neurological organisation
xii. To organise information and basic training for health link workers
including the use of jargon and terminology
xiii. To explore with the Central Liverpool Primary Care Trust collaborative
working, involving the health-link workers in an action-research initiative,
The use of neurological services by BME communities -–final report / Icarus December 048
to identify and raise awareness about neurological conditions and
services in Black and minority ethnic communities. This should form part
of a larger epidemiological / ethnicity study, which would include issues to
do with practice such as referral systems
xiv. To discuss with Merseycare (NHS) Trust, Central Liverpool Primary Care
Trust and the Walton Centre general improvement of neurological
services to people from Black and minority ethnic communities; on-going
xv. To discuss the findings of this report with Primary Care Trusts and
Social Services in order to develop a joint action plan. This should include
measures to effectively address ethnic monitoring and racial and cultural
awareness training for care and support workers and health staff.
xvi. To collate feedback on the proposal for recruitment of volunteers as
put forward in this report
xvii. To make this study available to the neurological groups that the Centre
works with and with national neurological organisations
xviii. To carry out a national study to consider access to neurological
services both in the statutory and voluntary sector, by members of BME
communities who have, or are caring for someone with a neurological
condition. To subsequently develop a ‘tool kit’ aimed to improve access to
NHS and voluntary sector organisations.
The use of neurological services by BME communities -–final report / Icarus December 049
INTRODUCTION
1. This report presents the findings of research into the use of neurological
services by Black and minority ethnic (BME) communities1. The Glaxo
Neurological Centre2 commissioned this research, which up-dates the
interim study undertaken in April 20003 and also includes an evaluation of
the Centre’s BME outreach project.
Interim study
2. The previous study sought to identify the reasons for the low take-up of
the Glaxo Centre’s services by people from BME communities. More than
500 had been in contact with the Working Life project during the last 12
months (1999/2000), but only six of these were from BME communities.
Anecdotal evidence also suggested a similarly low take-up of other
neurological services by people from BME communities4.
3. The Glaxo Centre was concerned to find out how it might address the low
take-up of its services. It was decided to look at the experience of other
neurological voluntary organisations and to see how they responded to
the needs of BME communities. In addition, it was felt important to gather
1 We recognise that the terminology used in respect of ethnicity is contested; the term BME
is in our experience the most widely accepted form in use at this time.
2 The Glaxo Neurological Centre is now known as the Mersey Neurological Trust – Glaxo
Centre. It is a non-medical centre providing information, support and advice to people who
have been diagnosed with a neurological condition mainly within the Merseyside area. The
Centre acts as a contact point and source of support for many local neurological charities
throughout Merseyside and the northwest (see appendix one for further details about the
Centre).
3 The use of neurological services by Black and ethnic minority communities; Glaxo
Neurological
Centre, Icarus April 2000.
4 The Birmingham Ethnic Minority Outreach Project – Final Report; Baxter C. circ 1999
The use of neurological services by BME communities -–final report / Icarus December 0410
information directly from members of BME communities, including the
experience of people who had been diagnosed as having a neurological
condition.
4. The findings from the 2000 interim report are drawn on in this report and
comparisons made with them. Consideration is also given as to the extent
to which recommendations identified in the interim report have been
acted upon. Further recommendations are made in the conclusion of this
report.
5. As well as up-dating the previous study, this report presents the main
findings of the evaluation of the work of the Glaxo Centre’s BME outreach
worker. The creation of this post has been one of the ways that centre has
directly tried to address the needs of BME communities in the intervening
period since the previous report. An assessment of the possible future
direction of this work has also been made.
6. This report comes at a time when there are important developments in
respect of neurological services with the introduction and implementation
of the National Service Framework (NSF) for long-term conditions and the
NHS Improvement Plan (June 2004). As part of the former, a major
research initiative is shortly to take place, that has to some extent been
influenced by the findings in the interim study and which identifies the
need for research to generate further knowledge about the needs and
experience of BME communities. This would seem to provide an
opportunity to address the inevitable limitations in the scope and depth of
this research.
Research Focus
7. This research has focused on trying to answer the following questions:
Is there evidence of ethnic variation in the incidence of neurological
conditions – if so this will have implications in respect of targeting of
services and in interpreting information about their current use by
members of BME communities
The use of neurological services by BME communities -–final report / Icarus December 0411
What differences, if any, are there in access to neurological services by
members of BME communities as opposed to the general population
What might explain any such difference
What actions can be taken to try to address any inequalities or issues
about access by members of BME communities
8. As with the previous study, this research has mainly concentrated on
services provided by neurological organisations in the voluntary sector.
This has been contextualised with reference to the experience of BME
communities’ access to health services in general and to a lesser extent
NHS neurological services.
Methods used
9. A number of different methods have been employed in undertaking this
research and the evaluation of the BME outreach project:
A review of research findings to identify the current state of knowledge
in respect of the relationship between ethnicity and the incidence of
neurological conditions, this has included internet search and also
survey information and accessing census and ethnic monitoring data
A survey of voluntary sector neurological organisations to find out
about access to their services by members of BME groups and how
they responded to the needs of these communities, and for those who
took part in the previous study, to see what changes if any have
occurred. These organisations were also asked about their knowledge
of ethnic variation in respect of the particular neurological condition
they were concerned with (see appendix two for list of organisations
taking part in the 2000 survey and this research)
A survey of local (Merseyside) BME community and voluntary sector
organisations and statutory sector agencies as part of the evaluation of
the outreach project and to determine their views about its future
direction (see appendix three)
The use of neurological services by BME communities -–final report / Icarus December 0412
Interviews with key informants to gain differing perspectives on both
the research and evaluation. This has included health workers, Glaxo
Centre staff, BME community leaders5 and a small number of service
users
Definitions
Neurological conditions
10. The current research has relied on the previous study’s definition of a
neurological condition as being ‘any condition that affects the brain and
nervous system.’ This is an inclusive categorisation that encompasses the
groups that the Glaxo Centre works with, and includes brain and spinal
injury. In considering the relationship between brain function and mental
state, we have stayed with the inclusion of autism as a neurological
condition and continued with the exclusion of schizophrenia. It’s
acknowledged that defining neurological conditions remains a subject of
debate.
‘Race’ and Ethnicity
11. While ‘race’ continues to have a currency in ‘common sense’
explanations of differences between ethnic groups, its status as an
objective biological category has been discredited. Ethnicity has much
greater validity as a concept and has a clear legal definition, though it is
not without difficulties as is illustrated by the 2001 census continued use
of the category Asian. It can be argued that there continues to be a lack
5 The interim study researched the experience of the largest BME groups on Merseyside as identified in the 1991 census: Chinese, Black British and African Caribbean, Somali, Asian, and Yemeni, but excluding the Irish community. It was suggested that the particularly poor health profile of Irish people in Britain (they are the only group whose health worsens on migration to this country) would merit a separate study. This study has also concentrated on the same groups, though it is relevant to note the 2001 census shows some significant changes in the ethnic profile of Merseyside. BME groups continue to be concentrated within Liverpool at 8.2% of the overall population (3.8% in 1991), and at significantly higher levels within a small number of inner-city wards. However, the largest group in the City is now ‘white other’ at 15.5% followed by the Irish at 14.9% and Chinese at 14.3%.
The use of neurological services by BME communities -–final report / Icarus December 0413
of precision in how the term’s ‘race’ and ethnicity are used in health
related research6 /7.
12. The clear evidence of significant differences between the health status
of ethnic groups8 is attributed to a number of factors including
environment, social exclusion and inherited or genetic factors e.g. higher
levels of diabetes found among some Asian groups. However, the
relationship between ethnicity and neurological conditions has been a
relatively neglected area of enquiry.
6 Lee B. et al, ‘Improving the Health of BME Communities - a North West Perspective’, NW Health Observatory 2001
7 Smaje C. ‘Health, ‘Race’ and Ethnicity’, The Kings Fund 1995
8 op cit. 7
The use of neurological services by BME communities -–final report / Icarus December 0414
Research Findings
Variation of incidence levels
13. The state of knowledge about the relationship between ethnicity and
the incidence of neurological conditions appears to have changed little
since 20009. There is a paucity of research into the incidence of
neurological illnesses among Black and ethnic minority communities in
Britain10. The evidence that does exist suggests an absence of any
significant relationship. The most important exception to this is
Cerebrovascular disease (Stroke) which is higher among people from
Caribbean, African and Asian populations.
14. The main focus of the research that has taken place is on the
relationship between genetic or hereditary factors and ethnicity. Pearce et
al11 suggest that genetics plays only a small part in ethnic differences in
health12. They comment that ethnicity is a complex construct that
includes biology, history, cultural orientation and practice, language,
religion and lifestyle, all of which can affect health. They also observe that
access to healthcare has a huge impact on health as does racism,
discrimination and cultural stereotyping.
9 Our literature review was supplemented by information from each of the national neurological organisations surveyed who were asked about their knowledge of any relationship between the neurological condition they were concerned with and ethnicity. An extensive Internet search for all the neurological conditions covered in this report was also undertaken from both national and international sources. We were able to identify only a limited amount of new research that was relevant to this study.
10 op cit 4: Baxter from a limited review of the literature suggests that there has been little work in connection with ethnicity and neurological disorders undertaken in the UK. What research has been undertaken, in the main has taken place in the USA. This still appears to be the case from our review of the research literature.
11 ‘Genetics, race, ethnicity and health’, Pearce et al, 2004
12 op cit 4: Baxter has suggested that there are significant variations in incidence levels worldwide and that these may be associated with ethnicity
The use of neurological services by BME communities -–final report / Icarus December 0415
15. The following combines the findings of the research review and the
information coming from the survey of neurological organisations:13
Ataxia
16. The Ataxia Association has identified anecdotal accounts of a possible
relationship with ethnicity, but there is no research evidence at this time
to support this.
Alzheimer’s
17. The Alzheimer’s Association predicts an increase in the numbers of
people from BME communities in Britain who will experience dementia as
the proportion of older people in these populations’ increases. At present
there are about 14,000 people with dementia among ethnic minority
communities. There does appear to be some ethnic variation in the
relative incidence levels, with reported increased frequency of dementia
amongst the South Asian community and African Caribbean’s linked to
diabetes,14 and increased risk factors for Africans, Inuits, Amerindians and
Northern Europeans15
Cerebral Palsy (CP)
18. A higher prevalence of Cerebral Palsy has been found amongst the
Asian population of Bradford. Sinha et al16 suggest that consanguinity is a
factor in this, with a high percentage of first cousin marriages and that
this points to a probable genetic aetiology in a significant number of
cases of Cerebral Palsy amongst the Asian community. They also highlight 13 The source of the information provided by neurological organisations has not always been given by them and in some cases we have not been able to identify the supporting research evidence 14 The Journal of Neuroscience (December 14 2004) states that diabetes may raise the risk of Alzheimers. Anthony J Brown M.D. in Reuter’s Health (17-5-04) says that a person is 65% more likely to develop Alzheimers if they have diabetes. As there is a higher incidence of diabetes among African Caribbeans and South Asian communities this may be worthy of note.
15 Dr William B Grant from the Sunlight, Nutrition and Health Research Centre states that the risk factors are both genetic and environmental. The primary genetic risk factor is the presence of the APOE e4 allele, which is more common among Africans, Inuits, Amerindians and Northern Europeans.
16 Sinha, G. et al ‘Prevalence and type of cerebral palsy in a British ethnic community: the role of consanguinity’, Developmental Medicine & Child Neurology 1997,39: 259-262
The use of neurological services by BME communities -–final report / Icarus December 0416
other research in the USA17 and other parts of the world that suggests
ethnicity is a factor in the incidence of Cerebral palsy.18 However, another
research study19 is at variance with these findings, recording the condition
occurring at a steady 1 in 400 births irrespective of ethnicity.
Cerebrovascular Disease (CVD) / Stroke
19. There is a very significant degree of variation in the incidence of CVD
or stroke between ethnic groups with much higher rates amongst people
from the Caribbean, the African Commonwealth and the Indian
subcontinent20.
20. The Stroke Association is carrying out research to investigate ethnic
differences in recognition that the Black population (Asian and African) is
at least twice as likely to have strokes than the White population after
adjustment for age and gender. This five-year research programme
(begun in 2000) aims to inform the development of preventive strategies
for stroke.
21. Research into the aetiology of CVD has tended to focus on genetic or
inherited predisposition. For Asians diabetes is a key factor in the higher
levels of the incidence of CVD, while hypertension is associated with
higher mortality rates for African Caribbean and African Commonwealth
migrants and also Asians.21 It also appears that after the initial brain
damage caused by stroke the consequences may be more severe
17 Peristein and Hood 1964, Blair and Stanley 1982, Arens and Molento 1989, Al-Rjeh et al 1991 – all cited by Sinha op cit 13
18 Murphy et al 1993, as cited by Sinha op cit. 13
19 Russel, A. ‘A preliminary research study into the use of voluntary sector services by people from minority ethnic communities’, SCOPE, 1996
20 Balarajan, R. and Bulsu, L. ‘Mortality among immigrants in England and Wales’ 1990 as cited by Smaje. C, op cit 7
21 Cruickshank, J ‘An outline of Cerebrovascular and renal disease’, 1989 as cited in Smaje C. op cit 7
The use of neurological services by BME communities -–final report / Icarus December 0417
amongst African Americans than Caucasians. High blood pressure may be
a factor in this as it contributes to haemorrhagic strokes.
22. Current research is looking at sickle cell disease, which is the
commonest cause of stroke in childhood and which has a higher incidence
amongst African Caribbean populations. Another study is looking at
whether patients’ own beliefs about their prospects of recovery vary
between ethnic groups. This may be an important factor in the success of
rehabilitation after stroke.
Huntington’s Disease (HD)
23. Huntington’s disease appears to be rare in African, Asian, Chinese and
Japanese people, though there is only limited research in this area.22
Migraine
24. There is no evidence of significant variation in the incidence of
migraine between ethnic groups. However the prevalence rates are
reported to be different in China than other parts of the world.
Motor Neurone Disease (MND)
25. The Motor Neurone Disease Association is aware that the incidence
level of MND is lower in some ethnic minority groups. A ten-year research
study23 of the mortality rates for MND has found significant ethnic
variation, with Asian males (in England and Wales) having only half the
mortality rate of the population as a whole. Asian females had a still lower
mortality rate at a fifth of the average, while the rate among Caribbean
migrants was also lower. However, another study suggests that the
incidence of MND is very similar for all ethnic groups24.
Multiple Sclerosis (MS)
22 Swash and Schwartz, 1989 as cited by Baxter C. op cit 4
23 6: Elian, M. and Dean, G. Journal of Neurology, Neurosurgery and Psychiatry, 1993 Vol. 56
454 –457 24 Dean, G. et al, British Journal of Preventive and Social Medicine, 1997 Vol. 31 141 –146
The use of neurological services by BME communities -–final report / Icarus December 0418
26. The Multiple Sclerosis Society recognises that there are ethnic
differences in the incidence of MS. Lower rates of MS have been
identified amongst Asian, West Indian and African migrants25. A study26 of
hospital discharge rates has also identified variations between ethnic
groups for MS. Migrants from Asia, Africa and the West Indies were shown
to have a greatly reduced risk of MS compared to people born in Britain.
The incidence of MS amongst the children of these groups though was
close to that of the general population. This study also found the
incidence of MND to be very similar amongst all ethnic groups.
Myasthenia Gravis (MG)
27. The Myasthenia Gravis Association’s literature suggests that MG occurs
in all ethnic groups at roughly the same level of incidence. A recent study
undertaken for the association however found that there is some
indication of ethnic variation in respect of the rarer inherited
myasthenias27. Consanguinity appears to be the factor influencing the
apparent higher incidence amongst some Asian groups. This particular
form of MG is commoner in children of cousin marriages, though the low
levels of incidence make accurate statistical analysis difficult. The
incidence of congenital myasthenia also appears to be slightly higher but
there has been no specific research on this.
Parkinson’s Disease (PD)
28. Research into PD has in the main focused on White populations, with
some research suggesting a higher prevalence in these groups and the
possible role of environmental factors.28 However there is evidence29to
suggest that the condition is just as common among Black populations
25 op cit 1926 op cit 20
27 ‘Involving members of BME groups – interim report April 04, Myasthenia Gravis Association, Icarus
28 Mutch 1988 and 1990 as cited op cit 4
29 Collier D. London Institute of Psychiatry as cited in ‘Seeking Solutions, Research Information; summaries of medical and welfare research’, Parkinson’s Disease Society 01
The use of neurological services by BME communities -–final report / Icarus December 0419
and that the symptoms are more aggressive and less responsive to some
forms of treatment. An international research project in Britain, USA and
India is trying to determine whether there are environmental, medical or
genetic differences that may account for this.
Spina Bifida & Hydrocephalus
29. There appears to be some variability in the incidence of Spina Bifida,
with a current joint USA and Canadian research programme trying to
establish the reasons for this.30 The incidence of Spina Bifida is higher
amongst Celtic groups and Sikhs from East India.
Ethnic Monitoring
30. The current level of knowledge about ethnic variation in neurological
conditions makes it unrealistic to attempt to quantify the overall
difference of incidence between ethnic groups. With the exception of CVD,
the difference between ethnic groups in respect of hereditary or genetic
variation appears limited and an increased risk in one area may be
balanced by a relative decreased risk for other conditions.
31. Other factors that may affect ethnic groups in different ways such as
cultural practices, environment, social class and poverty may have an
important impact on the incidence of some neurological conditions.
However, our understanding and knowledge of these is again very limited.
At this time, given these limitations, it is reasonable to base estimates of
the number of BME community members who may have a neurological
condition on demographic data and to use this as the basis of comparison
in respect of access to health services.
30 The SANDI project; University of Texas 04
The use of neurological services by BME communities -–final report / Icarus December 0420
32. The Neurological Alliance31 has estimated that over 10 million people
are living in the UK with a neurological condition, which has a significant
impact on their lives. Nationally this would mean that 1.300,000 members
of BME communities have a neurological condition, given that they
represent 13% of the population in the 2001 census.
33. The importance of ethnic monitoring for neurological conditions was
emphasised in the interim report, as was the lack of such data. Not a
great deal has changed in the intervening period. Dr Zaibby Shaikh,
director of EACH32 has recently commented on the virtual total absence of
statistics from service providers on BME patients with neurological
conditions, making the point that ethnic monitoring ‘is the tool that helps
you establish an ethnic breakdown. Being aware of your local
demographic population is essential if you want to service this group.’
There is a lack of evidence nationally dealing with prevalence and
incidence of neurological conditions across all communities.
34. The interim report recorded only three neurological organisations
undertaking any ethnic monitoring, though another two said they were
about to. In 2004 one of these had stopped collecting such data because
of resource constraints and there were no new organisations reporting
that they were undertaking ethnic monitoring.
35. The pioneering work undertaken by the Princes Park Health Centre in
Liverpool, which has been promoted by the Department of Health as a
model of good practice, has only now begun to be implemented by 15
other local GP practices in the Central PCT area, but it still waits
implementation elsewhere. However, the Liverpool Health Trusts since
1999/2000 now return both inpatient and outpatient ethnic monitoring
data. This should make it more possible to produce an accurate estimate
31 ‘ Neuro umbers – a brief review of the numbers of people in the UK with a neurological condition’, The Neurological Alliance, April 03
32 EACH is a leading Asian counselling service and this comment was made in an interview to Healthweb 22.9.04
The use of neurological services by BME communities -–final report / Icarus December 0421
of the numbers of people from BME communities diagnosed with a
neurological condition.
36. In respect of neurological conditions, the Walton Neurosciences Unit,
which serves patients in the North West, undertakes ethnic monitoring for
both inpatients and outpatients. In the period from 1.12.03 to 30.11.04 it
recorded 2% of its patients as being from BME communities. The BME
population for the North West is 7.9% and for Liverpool, where the unit is
located the BME population is 8.2%, suggesting an under-representation
of patients from these communities.
37. Walton is one of three neuroscience services for the population of the
North West. The other two are the Royal Preston Hospital and Hope
Hospital, Salford. Both undertake ethnic monitoring. The Royal Preston
carries out a form of ethnic monitoring in which it can run a query by
diagnostic coding of ethnic groups. However this depends on the accurate
assignment of the ethnic code, and there appears to be a high percentage
that are unspecified. Hope Hospital in Salford records ethnicity of
inpatients with both the diagnosis and procedures that the patients have
had.
38. The extent and progress of ethnic monitoring is a cause for concern
that still needs to be addressed. A rigorous assessment of the percentage
of BME community members accessing statutory and voluntary sector
health provision is suggested by these findings.
Access to services
39. The interim study noted a number of factors that previous research
had identified as acting as barriers to BME communities accessing health
services in general: 33/34
33 Health Needs Assessment of Black & Minority ethnic Communities in Liverpool’, 1995 Eolas for Liverpool Health Authority
34 ‘Health and Social Care for older Black and minority ethnic Residents of Sefton’ Eolas 1999, PSS and
The use of neurological services by BME communities -–final report / Icarus December 0422
Language difficulties affecting knowledge about services and
treatments and lack of appropriate information - need for translated
material and disseminating information in other forms
Cultural differences affecting expectations and understanding of both
conditions and treatments
Staff attitudes - including awareness about cultural issues; there may
be a failure to take account of dietary and religious requirements
Surgery and clinic opening times - a problem faced by Chinese and
Asian community members working in the catering sector
Lack of female staff - a particular issue for Muslim women
Racism
Level of awareness amongst recent arrivals of ‘how the system works’
A failure to appreciate the existence of important sub-groups within
larger minority ethnic groups
An assumption that minority ethnic communities ‘look after their own’
Timing of events may clash with religious festivals or prayer times
40. More recently the Commission for Race Equality (CRE)35 has stated
that BME communities continue to have poorer access to health services
and lower levels of satisfaction (as well as generally poorer health).
Continuing barriers that BME communities experience in accessing health
services included language difficulties, lack of knowledge about health
provision and cultural factors. It’s also relevant to note that in its review
of the promotion of race equality among Strategic Health Authorities,36
the CRE found a lack of response and progress being made.
41. Another recent report37 suggests that disparities in health care may or
may not be due to conscious or unconscious discrimination. There may be
other causes such as lack of access to particular kinds of health care, poor
communication between the patient and provider, lack of information and
Sefton Health Authority and Sefton Council
35 ‘Race Equality impact assessment,’ CRE, 2003
36 ‘Health and Social Care’, CRE 200237 ‘Eliminating health disparities: measurement and data needs’, The National Academics Press 2004
The use of neurological services by BME communities -–final report / Icarus December 0423
individual behaviour. Patient preferences may themselves be affected by
past experiences of discriminatory behaviour in a medical or other
setting.
42. Key informants from BME communities in Liverpool surveyed for this
research identified many of the same barriers. As was found in the CRE
study, lack of people’s awareness of services and lack of knowledge on
how to access services were seen as significant issues. In addition
communication problems, jargon, and terminology were viewed as factors
that could contribute to medical assessments not being properly
undertaken. Lack of information was again raised, as were language and
cultural factors.
43. Concerns over legal status were identified as a possible obstacle in
seeking help for refuges and asylum seekers. It was suggested that
Chinese people were much more likely to look for help from within their
own community than seek external assistance, while for Muslim women
there was the concern of having to see male medical staff. Perceptions
about health agencies and a questioning of whether they understood the
needs of BME patients was raised along with the need to have BME staff
to work with different communities.
44. The stigma of neurological illnesses and traditions and taboos were
identified as factors for some BME communities. More generally fear and
the practical consequences of an illness e.g. loss of speech, were also
considered as barriers. Physical access was also a factor such as the
transport if a medical centre was not on a direct bus route. A lack of
commitment by agencies to addressing barriers could act as a barrier in
itself.
Barriers re accessing neurological services
45. While there is an increased recognition of the barriers that BME
communities can face in accessing health services, inequality in access
remains an important issue. Though there is limited available evidence of
The use of neurological services by BME communities -–final report / Icarus December 0424
the barriers faced by BME patients with neurological conditions, they may
in some respects be particularly disadvantaged.
The interim study
46. The interim study identified a number of specific issues that BME
members experienced in accessing the services of voluntary neurological
organisations. These included the following:
The image of the neurological own organisation being perceived as
white and middle class
Services not being designed to meet the needs of individuals from BME
communities38
The belief that for some ethnic minority communities particular
neurological conditions may be treated as a source of disgrace, to be
hidden away
The simple lack of knowledge about the services these voluntary
organisations provide as possibly the most significant barrier
A ‘colour blind’ approach within the organisation that argues that
everyone is treated entirely the same, without recognising or
addressing factors that may exclude or disadvantage different ethnic
groups. This approach in itself contributes to the maintenance of the
barriers identified above.
47. In addition, other issues in accessing health services were identified:
Wrong assumptions by both White and Black people that members of
BME communities are not affected by certain conditions39
38 Russel, A. ‘A preliminary research study into the use of voluntary sector services by people from minority ethnic communities’, SCOPE, 1996
39 Comment made in a MS newsletter by a Black patient
The use of neurological services by BME communities -–final report / Icarus December 0425
Misdiagnosis because of difficulties in assessing mental competence
due to language difficulties and cultural barriers40/41/42
A lack of, or ineffective ethnic monitoring meaning that services may
not be aware that there is an access issue for BME community
members
48. A recent study43 has suggested that there may be an issue around the
western model of diagnosing illnesses and of patients being put off
attending clinics by the specialist neurological language, attitudes and
tests. Another recent report44argues that BME members with neurological
conditions are being given culturally inappropriate services and that there
is ‘cultural resistance’ within statutory and voluntary sector health care
services in addressing this. This report suggests that BME communities
have been ill equipped to deal with neurological conditions and their lack
of knowledge about them has lead many to fall through the ‘cracks in the
system’, with conditions often ignored or presented very late because of
the associated stigma. This in turn has made it more difficult to treat the
condition.
49. An Alzheimer’s project45 has recently argued that BME families in
Britain still struggle to get the support and treatment that’s appropriate
for people of a different cultural background. Professionals suggest the
40 As cited by Baxter in reference to a study of Alzheimer’s disease op cit 4
41 This has been suggested in a study of MS where it is thought doctors were only picking up on severe cases and missing milder ones; Elain and Dean 1993a ac cited by Baxter op cit 4 42 Diagnostic confusion between MS and tropical spastic paraparesis has also been reported in another study involving black Caribbean’s; Cruickshank et al as cited by Baxter op cit 4
43 op cit 25
44 MacAttram M. ‘Towards Diversity – a practical guide for improving local support for Black and Asian people living with a neurological condition’, published by the Parkinson’s Disease Society, 2004
45 “Dementia matters, Ethnic Concerns” – a film released in July 04 as part of the Care Needs of Ethnic Older Persons with Alzheimer’s project, run by the Policy Research Institute on Ageing and Ethnicity and their partners.
The use of neurological services by BME communities -–final report / Icarus December 0426
problem for BME communities is growing as the population ages, and that
much more needs to be done to bring the medical and social service
professionals together with voluntary groups and ethnic community
leaders.
Barriers identified by key informants
50. Many of the points identified above were reinforced in the comments
of key informants who were surveyed. This included identifying language
as probably the most important barrier, particularly for older people and
new arrivals; access to translation and interpreting, this potentially
presenting problems of confidentiality when family or friends were used to
interpret; and a continuing generally low level of knowledge about
neurological conditions and the availability of services within BME
communities (this is likely to be generally applicable irrespective of
ethnicity).
51. Other issues suggested were the confusion surrounding the difference
between mental health and neurological conditions; denial arising from
stigma, shame and concerns about family members marriage prospects
being damaged if it is an inherited condition and a reluctance therefore to
seek help; myths and superstitions; viewing neurological conditions as ‘an
act of God’ e.g. in the case of epilepsy; and racism and discrimination.
Access issues identified by Neurological Organisations
52. The voluntary sector neurological organisations surveyed46 identified
many of the same access issues for BME communities using their services
as noted above, as well as some additional ones:
Ataxia
46 In some cases organisations have not changed the comments made about access in the 2000 survey and where we did not receive a response to the 2004 survey we have inserted the entry from the interim study
The use of neurological services by BME communities -–final report / Icarus December 0427
53. Barriers mentioned were the difficulty of getting a diagnosis and lack
of interest of doctors, poor referral services, misdiagnosis and inadequate
resources. Language and advocacy workers were felt to play a significant
role for those who did not have English as a first language.
Alzheimer’s Disease
54. The organisation’s image was seen as a barrier. In addition, language
used on leaflets and lack of Black volunteers and staff. There were also
different cultural perceptions on dementia and different concepts e.g.
with carers. Low priority, lack of resources, lack of open debate and
previous bad experience were also mentioned.
Autonomic Failure (The Sarah Matheson Trust)
55. Language barriers and people not being aware of the service.
British Brain & Spine Foundation
56. Suspicion of the organisation and language related difficulties were the
main issues and a lack of confidence in the effectiveness or
appropriateness of treatments. Cultural differences were also identified,
language differences, and using existing community support structures.
British Epilepsy Association
57. The stigma attached to epilepsy in some cultures as people may be
considered to be either ‘possessed’ or ‘holy’. Language and culture, it was
felt, could also act as barriers.
Candid
58. Not being referred by GP’s and language difficulties
Cerebral Palsy (Scope)
59. People not knowing about the service.
The use of neurological services by BME communities -–final report / Icarus December 0428
Charcot Marie Tooth
60. Language difficulties and lack of knowledge about what services are
available. People were dealing with these problems within their own
families and communities without sufficient understanding about the
condition.
Dysphasia (Action for Dysphasic Adults)
61. General discrimination through lack of knowledge of other cultures and
backgrounds.
Dystonia
62. Language and cultural difficulties were identified.
Huntington’s Disease Association
63. The cultural implications of a hereditary disease was seen as the main
issue.
ME Association
64. A belief that BME members get help and support from within their own
community. Difficulties in obtaining a diagnosis and cultural differences
were also identified.
Migraine Action Association
65. Language difficulties were seen as an issue as were cultural issues–
migraine was often not viewed as needing medical attention and there
was a lack of awareness of available treatments.
Motor Neurone Disease Association
66. The image of the service as being white and middle class was an issue
as was the lack of culturally sensitive service provision, lack of knowledge
of services and the need to recruit people to the organisation from Black
and minority ethnic communities. A lack of appropriate services and
information in different languages were identified and information not
displayed in correct access points.
The use of neurological services by BME communities -–final report / Icarus December 0429
The Multiple Sclerosis Society
67. Some minority ethnic communities, it was felt, hide disabilities behind
closed doors rather than access help and services. Minority ethnic
communities are often not aware of how to get help. Providing
information in different languages is not enough and leaflets need to
reflect the communities they are reaching out to. Cultural barriers need to
be recognised as well e.g. Asian women who do not leave the family
home.
Myasthenia Gravis Association
68. Knowledge of cultural barriers may not be good as most staff are
white, a lack of material in other languages and the MGA news not having
a section specifically for Black and minority ethnic members
National Meningitis Trust
69. Language difficulties and the need for translators were identified
Neurofibromatosis Association
70. Cultural difficulties mostly, sometimes language.
Parkinson’s Disease Society
71. Lack of appropriate planning of services, resources and training.
Services are not sensitive to language, culture and needs of these
communities. Lack of promotion to BME communities.
Association for Spina Bifida & Hydrocephalus
72. The issue that many BME groups are headed by men who are not the
main carers and disability is not seen as a problem. In some communities
disability can be regarded as a disgrace and so is hidden. Obtaining
independent language and translation facilities were an issue.
The use of neurological services by BME communities -–final report / Icarus December 0430
The Stroke Association
73. Lack of awareness about the existence of the association.
Different Strokes
74. The usual barriers.
Tourette Syndrome
75. They had no direct experience but expect they do happen
76. A recognition of the difficulties and barriers that members of BME
communities can face in accessing appropriate care has recently lead to
the publication of a guide47 aimed at helping statutory and voluntary
sector organisations address this issue. This guide is a joint initiative
between the National Black and Asian Neurological Project Group and five
major neurological charities – the Parkinson’s Disease Society, the
Huntington’s Disease Association, the Multiple Sclerosis Society, the
Motor Neurone Disease Association and the Stroke Association.
Personal Experience
77. Comments of a small number of individuals from BME communities
with neurological conditions48 provide first-hand experience of some of
the above access issues. The interviewees had limited knowledge about
what services were available and the majority had not heard of the Glaxo
Centre. Several had experienced language difficulties, though
interpreters had been made available. The level of satisfaction with the
health services the group received varied from good to very
unsatisfactory, with one person feeling that they were not receiving the
47 op cit 44
48 Issues of confidentiality and willingness to be interviewed meant that it was only possible to interview eight individuals, with just two of these being in 2004. The interviewees came from the Liverpool Somali, Chinese, Indian, Pakistani, Yemeni and Black British communities. Five were male and three female.
The use of neurological services by BME communities -–final report / Icarus December 0431
medical care they were entitled to. Two of the people who were
unsatisfied felt that their ethnicity had been a factor in the medical
treatment they received or been offered.
78. This group’s experience and satisfaction with non-medical services
also varied and again, two people felt their ethnicity had detrimentally
influenced the services they received. The group identified a number of
access issues affecting them:
The need for various forms of non-medical advice and support
Welfare rights advice
Financial help
Transport and travel problems
Difficulties to do with accommodation
79. Most of the above issues may well apply to anyone who has a
neurological or any serious long-term medical condition and it is clearly
important to treat these comments with caution given the low numbers
interviewed. This does however suggest the need for a larger scale survey
of members of BME communities who have neurological conditions. One
of the questions this should try to address is the extent to which ethnicity
is perceived as a factor in determining access to services and how they
are experienced.
Positive Action
80. The ‘Towards Diversity’ report49 provides a practical response by five
of the main voluntary sector neurological charities to taking positive
action to address inequalities in access to services for BME members. It
stresses the importance of offering appropriate and culturally sensitive
services and the need for organisations to be diverse not only at delivery
level by employing staff from the communities they are working with, but
at all levels.
49 op cit 44
The use of neurological services by BME communities -–final report / Icarus December 0432
81. A recent Government consultation paper50 highlights ways that some
Health Authorities are attempting to overcome access barriers
experienced by BME communities. Though not specific to neurological
services they offer some useful ideas including regularly reviewing health
services with BME groups to ensure they are culturally, linguistically and
religiously appropriate. The value of setting targets to reduce health
inequalities, the need for effective ethnic monitoring in both primary and
secondary care and producing culturally appropriate health promotion
materials are all identified. The use of bilingual health workers is also
noted, which is an initiative that locally, the Central Liverpool Primary
Care Trust has taken by employing 13 bilingual health workers. It also has
a contract with Liverpool City Council to provide an interpreting and
translating service and carries out patient profiling in at least 15 GP
practices.
82. Various small initiatives have taken place round the country, for
example51 the Ilford Park Polish home have Polish speaking staff for their
residents who have dementia, as they state that often people lose their
English speaking skills as the disease progresses. In Holland, a care
centre for Surinamese immigrants with dementia incorporates familiar
food and traditional customs and this makes residents feel more secure
Positive action by neurological organisations
83. Along with identifying barriers to accessing their services, the
neurological organisations surveyed52 were asked about the positive
action they were taking to address these:
50 New Deal for Communities: race equality guidance’, October 2004, The office of the Deputy Prime Minister
51 “Dementia” –film produced by the Community Channel, 2004
52 Where we did not receive up-dated information from organisations we have included their entry from the 2000 survey, though in some cases this may be out of date
The use of neurological services by BME communities -–final report / Icarus December 0433
Alzheimer’s Disease Society
84. The organisation has employed outreach workers to develop
awareness and understanding of dementia in ethnic communities in
Sheffield, Leicester, Newcastle and Birmingham. One or two other
branches e.g. Portsmouth and Bristol have been extending services to
BME groups, though they do not have workers specifically employed to do
so. A joint research project by London region and Haringey Social Services
looking at the needs of minority ethnic people with dementia has been
undertaken. Information is translated into Gujerati, Hindi, Punjabi, Urdu,
Cantonese, Polish, and Welsh. The following suggestions were put forward
as a basis for an action plan in 2000:
Organisational image – develop and extend house style to include
guidance on development of materials.
Phones – minicom, sub to language line
Leaflets – translation
Posters / language – posters / leaflets in minority ethnic community
languages and in community press
Representation in literature – house style
Previous bad experience – specific contact with referral agencies to
overcome this
Lack of outreach – advertise for specific outreach volunteer, write a job
description for someone to develop links
Different responses and expectations – training on trans-cultural
counselling
Different concepts e.g. carers – leaflet e.g. who are carers with pen
portraits, and appropriate representative illustrations
Low priority – remit to a specific worker
Cultural perceptions of dementia – research
85. The society also set up a Black and Minority Ethnic Communities
Project to increase their understanding and to share their knowledge of
dementia by working with people from BME communities. This was a pilot
project designed to raise awareness of dementia amongst BME
communities across London and to promote the provision of culturally
The use of neurological services by BME communities -–final report / Icarus December 0434
appropriate social care services. They obtained a 3 year grant from the
Department of Health and the City Parochial Foundation to work in
partnership with 4 community groups: The Friends of African/Caribbean
Carers and Sufferers of Dementia, Chinese Community Centre, AMARDEEP
(a mental health project for people of South Asian descent) and Barnet
African Caribbean Association. The project lasted from November 2000 to
March 2003.They have also produced a publication called “Toolkit for
Working with Cultural Diversity”.
86. Their findings and recommendations included the following which were
in addition to their suggestions in 2000:
Raising awareness:
Videos were a big success but need to be translated into other
languages
Events and conferences also a success but need to be on going
Other literature-leaflets in 16 languages and information packs
Developing partnerships
Partners welcomed this opportunity-4 were identified
Appropriate training was key to success
Provision of the grant was often not enough for the partners-they also
needed practical help
Needs to be flexible and easily accessible format
Participants benefit from extra follow up
Cultural awareness training needed for members and staff of the
Society
BME trainers to be part of the team
Work with Alzheimer’s Society branches and national organisation
The project helped strengthen the existing links between the Society
and BME communities in London and many branches are now more pro
active in reaching out
Enquiries from BME communities have increased
The use of neurological services by BME communities -–final report / Icarus December 0435
Branches nationally are more aware of working more actively with
people from BME communities
Autism (The International Autistic Research Organisation)
87. Interpretation available in some languages
Autonomic Failure (The Sarah Matheson Trust)
88. Use of hospital interpreting services
British Brain and Spine Foundation
89. A part time officer had been appointed to improve access to services
from Black and minority ethnic communities. Some of the organisation’s
booklets have been partly translated into Cantonese and Italian and they
are a member of Language Line.
British Epilepsy Association
90. In 2000 the association had plans to produce information in other
languages, primarily Asian languages.
Cerebral Palsy (SCOPE)
91. Information available in Arabic, Bengali (Sylhetti), Cantonese, Gujerati,
Hindi, Punjabi (Gurmakhi and Mirpuri), Somali, Spanish, Turkish, Urdu, and
Welsh, including audiotapes. Scope also subscribes to Language Line; a
telephone based interpreting and translation service. This provides access
to interpreters 24 hours a day in 100 languages.
Dementia (CANDID)
92. Interpreters in different languages.
Dysphasia (Action for Dysphasic Adults)
93. In 2000 the organisation was looking at the design of material suitable
for Asian languages, though not currently being developed.
The use of neurological services by BME communities -–final report / Icarus December 0436
Huntington’s Disease Association94. One of the five national organisations contributing to the publication
‘Towards Diversity’53
MNDA
95. Information provided in Punjabi and Urdu. National outreach project in
partnership with
Parkinson’s Disease Association, Language Line and leaflets.
Migraine Action Association
96. Information produced in Bengali, Hindi, Gujerati, Punjabi, and Urdu.
MS (The Multiple Sclerosis Society)
97. One of the five national organisations contributing to the publication
‘Towards Diversity.’54National support group aimed at raising awareness
in Asian communities. Also the Shane Project (for the African-Caribbean
community). Information provided in Urdu, Punjabi, Welsh, Bengali,
Gujarati and Hindi. Also Hindi on audiocassette.
Myasthenia Gravis Association
98. An evaluation55 of the involvement of BME community members in the
association was undertaken this year, with a number of specific
recommendations made. The association is looking for funding for an
outreach worker and to translate its information into other languages. In
addition, the association is intending to provide training for its staff, local
branches and volunteers in race and equality issues.
National Meningitis Trust
99. In 2000 the Trust intended to have basic materials translated into
selected minority ethnic languages.
53 op cit 44 54 op cit 4455 op cit 27
The use of neurological services by BME communities -–final report / Icarus December 0437
Parkinson’s Disease Society
100. Recently published the ‘Towards Diversity report.’56 The guide was
developed following an event held for neurological organisations in 2003.
It is part of a joint approach between a group of neurological
organisations that began in Birmingham 10 years previously. The National
Black and Asian Neurological Project Group aims to:
Share knowledge, ideas and good practice across organisations to
improve the support that Black and Asian people with neurological
conditions receive both locally and nationally
Explore and develop the potential for partnership opportunities, sharing
resources as appropriate
Develop joint working on projects that offer practical solutions to help
staff meet organisational as well as local objectives
Work together to influence and shape policy and practice which affects
people from Black and Asian groups with neurological conditions
Promote and influence, within their own organisation, work with people
from Black and Asian groups
The guide contains a range of ideas from helping to improve staff’s
understanding about the needs of diverse communities and producing
resources to partnership working (with health and social services, community
groups, places of worship, other neurological organisations etc.) It gives the
social, business and legal case for reaching out to diverse communities. It
gives examples of projects around the country that have been successful
plus a list of useful contacts.
The Society also has an outreach service for Black and minority ethnic
communities based in Birmingham. In London it has a pilot project, to be
focused on 2 areas: partnership work with the PCT/Social Services, and Peer
Education. In Halifax, a partnership project with BME health link workers.
Community support worker monitors contact made with Black and Asian
people. New services to include ethnic monitoring. Information translated
into Punjabi, Urdu, Bengali, Gujerati, Cantonese, Welsh and Hindi.
56 op cit 44
The use of neurological services by BME communities -–final report / Icarus December 0438
Association for Spina Bifida & Hydrocephalus
101. Information sheets available in Urdu, Punjabi, Hindi and Bengali.
Advisers with local minority ethnic community groups in their area. Has
taken part in initiative to improve access to information for BME
communities in the West Midlands.
The Stroke Association
102. One of the five national organisations contributing to the publication
‘Towards Diversity.’57 Carrying out research into different levels of
incidence within different ethnic communities and produces fact sheets
for high-risk communities. Pamphlets available in Punjabi, Hindi, Urdu,
Bengali, Gujerati, and Welsh and selected leaflets on audiotape.
Syringomyelia (ANTS)
103. Translation can be provided on request.
57 op cit 44
The use of neurological services by BME communities -–final report / Icarus December 0439
Evaluation of the Glaxo BME outreach
project
Introduction
104. This section of the report presents the main findings of the evaluation
of the BME outreach project and assesses the future direction of this
work. The post of outreach worker was originally funded in 2000 via a
grant secured from the Liverpool Central Urban Initiative. This was to run
a pilot project within the Working Life Project to address the needs of BME
communities in the Liverpool wards of Granby and Abercromby. The
project aimed to provide high quality information, advice and guidance to
build the capacity of BME communities so as to enable them to take more
control of their lives. In addition it aimed to improve access to Health and
Social Services and help reduce the effects of social stigma.
105. In 2002 a new grant was provided by the National Lottery to continue
the funding of this post and during the same year the original worker
resigned and the current post-holder was recruited. The main duties of
the post include developing outreach work in respect of the Working Life
Project and more generally, extending access to the Glaxo Neurological
Centre by members of BME communities, (including refugees and asylum
seekers), who have been diagnosed with a neurological condition.
106. The area covered by the project was extended to cover the whole of
Merseyside and the duties to include the development of networks with
Health, Social Services, training and employment agencies, other
statutory bodies and BME community and voluntary sector organisations.
The outreach worker was also expected to work with individual clients and
to establish ‘outreach’ centres initially starting in Liverpool (see appendix
for full list of these roles). The funding for this post is due to end in
December 04, though it will be extended for a limited time while efforts
are made to secure alternative funding.
The use of neurological services by BME communities -–final report / Icarus December 0440
Evaluation
107. This evaluation is based on review of background papers and reports
including funding applications58, interviews with key informants including
health link workers, the outreach worker and his line manager, the Glaxo
Centre manager, observation of neurological forum meetings, and a
survey of community and voluntary sector organisations working with
BME communities on Merseyside.
108. At the outset it is relevant to note the scope of the duties of the
outreach worker and to place these in the context of the access barriers
identified elsewhere in this report. This context makes it understandable
as to why these duties are so wide, but it is difficult to see how they could
be achieved by any one worker over the limited period that the post has
been funded. This has inevitably led to some prioritising of these duties.
The outreach worker
109. In practice the outreach worker has seen providing support to
individuals and building up a variety of contacts within BME communities
as the main focus of his work. In addition, other duties have included
networking with, and educating voluntary and statutory services and
providing interpreters and culturally sensitive support when needed.
Breaking down the barriers that prevent people accessing employment,
training and social opportunities and recruiting volunteers from BME
communities to work in the Glaxo Centre have also been a feature of the
work.
110. Limited resources have constrained his ability to work with local
communities and agencies in helping them build their capacity to support
people within their communities who have neurological conditions.
58 This evaluation does not comment directly on the monitoring, or output data that has been required by the National Lottery.
The use of neurological services by BME communities -–final report / Icarus December 0441
Providing on-going support to volunteers has also proved difficult due to
pressure of other duties, as has been extending the service beyond
Liverpool. Additionally, there has often been a lack of interest from
employers in respect of disability and ethnicity. He had also had to focus
on networking with BME organisations rather than disability groups.
111. In assessing the effectiveness of outreach work with BME communities,
the different methods he has employed had been of limited success.
These methods had included:
Working together with other organisations, holding health promotion
days in the local communities, promoting the services that the Glaxo
Centre offers
Personal contact with Black and minority ethnic communities, visiting
them, explaining about the Glaxo Centre, his role as outreach worker
and providing written information
Developing a BME neurological forum aimed at disseminating
information to BME communities, and working with statutory and
voluntary agencies so that a long-term solution to BME communities
accessing neurological support services could be secured.
112. The difficulties experienced centre partly on the low incidence of
neurological illnesses (with the exception of stroke) in the general
population and therefore the very low actual numbers within any BME
community.59 This and the fact that for some communities particular
neurological conditions may be hidden away, coupled with issues of
confidentiality limiting health professionals’ ability to provide contact
details of patients, have contributed to the overall difficulty of engaging
people. In addition, the priority given by organisations and key workers to
59 Even for some of the most common neurological conditions prevalence rates are very low: for Parkinson’s Disease the rate is 200 per 100,000, for Multiple Sclerosis 114 per 100,000, for Motor Neurone Disease 7 per 100,000 and for Huntington’s disease approximately 13.5 per 100,000 (from Neuro Numbers op cit 31) Any calculation of actual numbers of members of a particular ethnic minority group in a particular area, for any one condition is likely to produce extremely low figures.
The use of neurological services by BME communities -–final report / Icarus December 0442
neurological conditions has almost certainly been influenced by all the
other information, events and forums aimed at BME communities.
113. One of the main strengths of the post has been the very visible
presence of the outreach worker in the BME communities and thus also of
people’s knowledge of the Glaxo Centre and what it provides. However,
although BME communities are now aware of the Glaxo Centre and more
people are using it, without an on-going presence of some kind, the
extent of their knowledge and therefore access is always likely to be
limited. Lack of resources had not allowed a local presence, although
recently office space within the Granby area had been secured for
outreach work one day a week.
114. The partnerships that have been developed with BME groups and
organisations have been very fruitful, as have been those developed with
statutory agencies, although the benefits of the latter would only be
visible in the longer-term. However, getting the balance right of working
both at a strategic level as well as helping clients has created a tension
that isn’t easily resolved.
Key informants
115. Both the manager of the Working Life Project and the Centre Manager
identified several strengths to the post including the visible presence of
the outreach worker and hence of the Glaxo Centre in the BME
communities and the bridges that have been built. This has resulted in
the Glaxo Centre becoming more accessible to people in BME
communities. A two-way flow had been developed with more people
coming to the centre and not just the Glaxo Centre going out to meet
them in their own communities, as had always happened previously. This
had resulted in more staff, more volunteers and one committee member
from the BME communities.
116. As well as dedicated outreach work with BME communities, the Glaxo
Centre has also been able to contribute to community events as a result
of the lottery funding. An example of this was the joint event with
The use of neurological services by BME communities -–final report / Icarus December 0443
Refugee Action which proved very successful and enabled relationships to
be developed with a number of BME organisations.
117. Race and cultural awareness training for Glaxo staff had been carried
out, as has training for staff in the Walton Centre, creating more
understanding of issues with regard to BME communities. There was also
recognition by national neurological organisations of the good practice at
the Glaxo Centre.
118. The numbers of people using the Glaxo Centre from the BME
communities has however, not been as high as had been hoped; the
exact numbers have not been fully recorded60 for the outreach project
reflecting both sensitivities and practical difficulties in ethnic monitoring
its work. Funding has been available to carry out more events and road
shows with BME communities, but few people have attended these. This
may be due to stigma associated with neurological conditions and might
be overcome if these activities also involved wider health issues. As the
post is time limited this created constraints in forward planning.
119. The role and development of the BME neurological forum was
discussed with members of the Merseyside Multicultural Diabetes Forum.
This has a similar brief to that intended for the neurological form and had
recently undertaken research in to the uptake of diabetic services by BME
communities that had relevance for neurological services. There are a
number of health initiatives aimed at local BME communities, which made
demands in terms of attending meetings, forums, events and other
activities. Often the responsibility for liasing and working with these
initiatives fell on the same relatively few individuals. There were also
instances of overlap and duplication.
120. This discussion strongly suggested the value of a collaborative
approach to the development of a BME health forum that would have a
wider brief than neurological conditions. It also helped to explain the 60 106 people have used the outreach service and neurological information widely distributed amongst BME communities, though not all contacts have been recorded
The use of neurological services by BME communities -–final report / Icarus December 0444
difficulties that had been experienced in the development of the
neurological forum and getting a consistent attendance and willingness
for people to take on any work arising from its meetings.
Survey findings
121. The survey of community and voluntary sector organisations and
statutory agencies61 was intended to help assess the impact of the
outreach project. It found that the majority had heard of the outreach
project; a few knew a great deal about it with only a small number
knowing nothing at all. Two-thirds of community organisations had had
contact or involvement with the project and two thirds had received visits
from the project worker and attended meetings and talks it had organised
and almost all had received information about the project. A small
number had phoned for advice or information or had received help for
people with a neurological condition, though only two had taken part in
the multicultural neurological forum.
122. Almost a third of the agencies surveyed had received visits from the
project worker and the same number had received information about the
project and had attended meetings/talks organised by it. A few had
phoned for advice or information, or had received help for a person with a
neurological condition. About half had found the contact with the project
very useful and just under a half quite useful. The reasons given for these
responses were very positive and included such statements as:
‘The outreach worker is friendly, approachable, knowledgeable in
terms of networking and resourceful’, ‘He has been very supportive
and encouraging’, ‘We have always had positive and very informative
information from the project’.
123. Other comments centred on the help received in recording a video for
the Asian communities, a football tournament organised by the outreach
worker, the speed with which he provided help, and the value of his being
61 A total of 31 questionnaires were returned out of 78; 18 of these were from community organisations and Health Link Workers and 13 from agencies. The response rate was lower than expected, possibly due to the survey being conducted during the holiday season and it may also have been affected by the number of other local surveys in circulation at that time. The Health link workers were also interviewed at the time of the survey
The use of neurological services by BME communities -–final report / Icarus December 0445
able to access interpreters. A small number said that contact had been
limited due to the few people they had come across with neurological
illnesses.
124. Agencies and Health link workers were asked if the involvement with
the outreach worker had brought about any changes in how their
organisation/service works. Mainly they said that it had increased their
awareness about the conditions affecting BME communities as well as the
project itself and were probably more effective because of the advice
given by the outreach worker, and would therefore be happy to refer
anyone. They were also asked if they were aware of any impact the
involvement with the project had had on patients/clients. In reply to this,
two said it had been a great support to clients, while others said that
people now knew there was help available.
125. A number of suggestions were made about improving the effectiveness
of the project including regular contact with community organisations,
keeping groups informed and the use of different venues for meetings so
as to reach out to more communities. Two people felt the project should
be more proactive and one that it should have a local base. The value and
high standard of the work was restated and reference made to the very
significant impact the project has had on the Somali community.
126. Almost all thought it was very important to have an outreach project
that tries to raise awareness about neurological conditions with BME
communities and most that it was very important to try and raise the
awareness of health workers regarding the barriers and difficulties people
from the BME communities may face. Many felt there was a need for
training around cultural and religious needs as often the ignorance of
Health workers acted as a barrier for people accessing services.
Assessment
127. The outreach project has had to overcome a number of difficulties in
trying to achieve its objectives. In part these relate to the relatively low
The use of neurological services by BME communities -–final report / Icarus December 0446
incidence of neurological conditions and the small numbers of people
from local BME communities who are directly affected; it has also had to
overcome the lower priority given to this aspect of health by hard-pressed
community sector workers and activists in the midst of a range of
competing demands. This in particular has impacted on the worker’s
efforts to develop the BME neurological network.
128. Reference has already been made to a number of barriers that inhibit
the use of neurological services by BME communities, some of which
create further difficulties in undertaking outreach work e.g. denial that a
family member is affected by a condition. The historic disadvantage and
discrimination faced by BME communities locally adds another dimension
in understanding the complexity and difficulties of engaging individuals
from these communities and the groups that represent or work with them.
129. Not withstanding the above it seems clear that this project has in
general been viewed as a positive initiative and a valuable resource,
which has been enhanced by the personal commitment of the worker. It
has been important for him to remain focused and motivated in a
situation that places a range of demands and responsibilities on him and
yet, at the same time has the potential for making him feel isolated. Not
least of the demands on him are the pressures of working with individuals
with neurological conditions. It is unfortunate that we have not been able
to undertake an assessment of the impact of this work with individuals,
with only two people agreeing to be interviewed.
Future Direction
130. There is recognition within the Glaxo Centre that the outreach project
may need to change to develop a more integrated approach with other
agencies in meeting the health needs of BME communities. One
suggestion is that the post could have a wider health brief, with a variety
of health related agencies working together to fund it. This could be
linked to locating the worker within the BME communities to provide an
on-going and visible presence. It is envisaged that an initiative along
these lines could help overcome the stigma that can be associated with
The use of neurological services by BME communities -–final report / Icarus December 0447
neurological conditions in some BME communities, by making it just one
of a number of health issues that advice and support was provided on.
This would also mean that the worker had an increased number of
individual clients to work with.
131. The apparent difficulty with this proposal is the extent to which it
dilutes the focus on neurological conditions, which might be even more
emphasised if the worker was not based in the Glaxo Centre.
132. Another proposal envisages a team of volunteer ‘outreach’ workers
being recruited from local BME organisations thorough the appointment of
a volunteer coordinator and a development worker. A consortium of
voluntary sector health and care organisations that were concerned to
improve their contact with BME communities would also be developed
and they would provide volunteering opportunities. The volunteers would
not only undertake volunteering within these organisations, but would
also act as a link to their community own organisation and the
consortium.
133. One outcome of this initiative is seen as being improved capacity by
consortium members to work with BME communities and improvements in
access to their services. The key role that the Glaxo Centre would play in
this initiative would ensure its continued links with BME communities and
the neurological support it provides. It is also envisaged that this initiative
would increase the numbers of BME members gaining employment, or
volunteering experience, while training provided to all the organisations
taking part would improve cultural awareness and knowledge of
neurological and other health conditions.
134. This proposal would be dependant on the ability to recruit and sustain
a group of ten volunteers over a 12 month period, which may be more
challenging than it might initially appear, particularly depending on the
actual amount of time they would be asked to commit. If this challenge
can be met this would be an innovative project of value that addresses
The use of neurological services by BME communities -–final report / Icarus December 0448
some of the difficulties of promoting awareness about neurological and
other conditions within local BME communities.
135. The inherent difficulties in undertaking outreach work with BME
communities in respect of neurological conditions should be
acknowledged in any planned changes to the present role and
responsibilities of the worker, or other related proposals. An expectation
that this worker is likely to have contact with a significant number of BME
members with neurological conditions is unlikely to be realised. Not
withstanding this it is important to recognise and value the other work
undertaken in networking, training and awareness raising with BME
community organisations, statutory agencies and VCS organisations.
The use of neurological services by BME communities -–final report / Icarus December 0449
Conclusion
136. This research study has set out to answer four key questions; the first
of these is whether there is there evidence of ethnic variation in the
incidence of neurological conditions. The state of knowledge about this
has not developed greatly since the interim report in 2000, but we can
identify more ethnic variation in different neurological conditions. The
main focus of research has been on how genetic factors may explain such
variation, though other factors such as social class, environment, culture
may well have a bearing.
137. Where we can identify any significant ethnic variation, targeting
preventive and other health services at the ethnic groups concerned may
be appropriate e.g. in the case of CVD / stroke and Asian populations.
138. The second question we have considered is whether there are any
differences in access to neurological services by members of BME
communities as opposed to the general population. The initiations of
current ethnic monitoring of health services creates difficulties in
assessing this, certainly there is an indication of under-representation in
respect of some services based on monitoring data. There is also a
significant amount of anecdotal accounts that strongly suggests this is the
case.
139. The next question we have attempted to answer is what might explain
any such differences. These have been well rehearsed in the body of this
report without repeating them here. What is of particular concern is the
extent to which many of the barriers identified that can be seen as
contributing to inequalities in access to neurological services have an
enduring nature, despite of an awareness about their existence over a
number of years.
140. The final question asks what can be done to try to address inequalities
or issues about access by members of BME communities. Here a number
The use of neurological services by BME communities -–final report / Icarus December 0450
of practical suggestions have been made and there has been progress in
trying to address barriers to access by some of the national neurological
charities, though much still needs to be done.
141. The Glaxo Centre outreach project has been a positive attempt to
address some of the issues identified above in respect of improving
access for BME communities to neurological conditions. The project has
had to overcome a number of difficulties, but has still managed to make
an impact and is generally viewed as a valuable resource. It is hoped that
this report may help in identifying the future direction of this initiative.
Recommendations
142. In the main the recommendations that were identified in the interim
report have either been achieved or are ‘on-going’. This includes having
produced information about the services the Centre provides in the
languages of the main minority ethnic groups on Merseyside, while a DVD
is also shortly to be launched.
143. The following recommendations are made in respect of the Glaxo
Neurological Centre, though they have relevance for other organisations
working with people with neurological conditions.
144. To secure funding for the Outreach Worker’s post and to reconsider
the remit of this post.
145. To explore with Health and Social Services how information about
neurological conditions and ethnicity can be made available to their staff
and how they can provide translated materials for their clients / patients.
This remains a recommendation that was identified in the interim report
as it has not been a high enough priority within Health and Social Services
The use of neurological services by BME communities -–final report / Icarus December 0451
146. To examine the most practicable arrangements for ensuring the Centre
has on-going access to interpreting services, (at present it has a limited
budget).
147. To further develop and strengthen relationships with organisations and
groups representing Black and minority ethnic groups across the rest of
Merseyside and to work with them to further explore the most effective
ways of promoting its services to these communities and to the dispersed
asylum seeker population. MAAN, the Somali Mental Health Project would
be one example, as in this community stigma is attached both to mental
illness and neurological illnesses, as are neurological problems among
some BME communities. Also to continue to develop partnerships with
other neurological organisations and statutory bodies. Time constraints
have to date meant that the focus of the work has been only in Liverpool
148. To organise information and basic training for appropriate staff and
volunteers working with Black and minority ethnic groups; still on-going
149. To organise cultural awareness training for staff and members of each
national neurological organisation
150. To organise information and basic training for health link workers
including the use of jargon and terminology
151. To explore with the Central Liverpool Primary Care Trust collaborative
working, involving the health-link workers in an action-research initiative,
to identify and raise awareness about neurological conditions and
services in Black and minority ethnic communities. This should form part
of a larger epidemiological / ethnicity study, which would include issues to
do with practice such as referral systems
152. To discuss with North Mersey Community (NHS) Trust, Central
Liverpool Primary Care Trust and the Walton Centre general improvement
of neurological services to people from Black and minority ethnic
communities; on-going
The use of neurological services by BME communities -–final report / Icarus December 0452
153. To discuss the findings of this report with Primary Care Trusts and
Social Services in order to develop a joint action plan. This should include
measures to effectively address ethnic monitoring and racial and cultural
awareness training for care and support workers and health staff.
154. To collate feedback on the proposal for recruitment of volunteers as
put forward in this report
155. To make this study available to the neurological groups that the Centre
works with and with national neurological organisations
156. To carry out a national study to consider access to neurological
services both in the statutory and voluntary sector, by members of BME
communities who have, or are caring for someone with a neurological
condition. To subsequently develop a ‘tool kit’ aimed to improve access to
NHS and voluntary sector organisations.
The use of neurological services by BME communities -–final report / Icarus December 0453
Appendix One: Glaxo Neurological Centre
What is the Glaxo Neurological Centre?
Opened in Liverpool in 1993, the Centre is a unique non-medical centre
offering advice, information and support to people with neurological
conditions and their families. It also aims to raise the awareness of
neurological conditions in the community at large, and produces a monthly
newsletter.
Who runs the Centre?
The Centre is run by a registered charity, The Mersey Neurological Trust. The
work of the Centre is carried out by the staff group and trained volunteers
who have direct experience of, or a particular interest in neurological
illnesses.
How is the Centre funded?
The Centre is run by an independent charitable trust, the Mersey
Neurological Trust. Glaxo Holdings plc donated £l m which enabled the
Centre to be built, hence the name Glaxo Centre. Liverpool City Challenge
donated £250,000 to assist the project and the Mersey Regional Health
Authority provided an initial grant of £65,000 pa for three years to help with
running costs. The Trust currently generates funds for the continuation of the
Centre.
What facilities are available at the Centre?
The Centre is designed to be fully accessible to disabled people.
A reference library, database and internet facilities are available to the
public.
'Drop-In' advice and information service
Coffee and Snack Bar
Conference facilities and exhibition space
Accommodation for various neurological charities
Are there other services available at the Centre?
Start-up assistance and advice for new support groups
Outreach service for Black and minority ethnic communities
Access to neurological charities and their workers
The use of neurological services by BME communities -–final report / Icarus December 0454
Welfare Rights/Legal Advice sessions and advice on employment issues
Regular exhibitions and awareness raising events
The use of neurological services by BME communities -–final report / Icarus December 0455
The Working Life Project
The Working Life Project was launched by the Mersey Neurological Trust in
the Glaxo Centre in 1995 with a grant from the National Lotteries Charities
Board. It aims to help people who are in work or looking for a job, and have
been diagnosed with neurological disorder.
It offers an individually tailored programme of support, which could include
Individual counselling
Help to stay in employment or find alternative work
Advice about training
Access to benefit advice
A chance to talk to the specialist organisations who know about the
different neurological conditions
Help to sort out problems with daily living
Contact: Brian Simpson on 298 3282. [email protected]
The ethnic categories used in the Working Life Project are
White British
Any other white background
White and Black African
Black or Black British
Black African
Asian or Asian British
Bangladeshi
Other Asian background
Other racial group
White Irish
White and Black Caribbean
White and Asian
Black Caribbean
Any other Black background
Indian
Pakistani
Chinese
Prefer not to say / Don’t know
Main roles of the BME outreach worker
The use of neurological services by BME communities -–final report / Icarus December 0456
To work with individual clients to assist them to develop their potential
To network with Black and minority ethnic organisations and disability
groups across Merseyside
To network with Health, Social Services, Voluntary, Training and
Employment Groups and other statutory services
To establish ‘outreach’ centres for the Project initially in Liverpool and
expanding to Merseyside and beyond
To work with local communities and agencies to resource them and
build their capacity to support people within their communities who
have neurological conditions
To facilitate a culturally and linguistically appropriate advocacy
service
To provide an Education and Information Service to local employers re
disability and race
To help to break down barriers preventing people accessing
mainstream employment, training and social opportunities
To recruit and train volunteers from the relevant communities
To participate in project evaluation
To keep accurate records and reports
To follow the policies of the Glaxo Neurological Centre regarding anti-
discriminatory practices, health and safety etc
To work within the remit laid down by the project funders
The use of neurological services by BME communities -–final report / Icarus December 0457
Appendix two: Voluntary Sector Neurological
Organisations Surveyed
NB: * denotes organisations that responded to the 2004 survey
Ataxia UK*
Alzheimer’s Society*
ANTS (Ann's Neurological Trust
Society)
BASIC - (Brain & Spinal Injury
Charity) *
British Brain & Spine Foundation*
CANDID -(Counselling & diagnosis
in dementia)*
Charcot-Marie-Tooth (CMT)*
The Dystonia Society*
Huntington’s disease association*
Myalgic Encephalomyelitis (ME)
Association
Migraine action association*
Motor Neurone Disease
Association*
Meningitis Trust
The Multiple Sclerosis Society*
Muscular Dystrophy Campaign
Myasthenia Gravis Association*
Neurofibromatosis Association
Neuropathy Trust
Parkinson’s Disease Society*
Autonomic Disorders Association
Sarah Matheson Trust
SCOPE
ASBAH - (Assoc. for Spina Bifida &
Hydrocephalus)
The Stroke Association*
Different strokes
Tourette Syndrome (UK)
Association*
Appendix three: Local organisations surveyed
Advocacy Project
Age Concern
Amadudu
BEST Team
Black Health Network
British Red Cross - Merseyside
Branch
Brotherhood Of The Cross And Star
Canning Area Action Group
Friends Information Centre
Granby Toxteth Review
Irish Community Care Merseyside
Liverpool Alcohol Service CIC
Liverpool Black Sisters
Liverpool Family Service Unit
Liverpool Housing Action Trust
Liverpool Somali Community
Liverpool Yemeni/Arabic Club
Local Solutions Shopmobility
Lodge Lane And District Credit Union
Marie Curie Centre
Mary Seacole House
Merseyside Bangladesh Organisation
Merseyside Brook Centre
Merseyside Drugs Council
Merseyside Hazards And
Environment Centre
Merseyside Society For Deaf People
Merseyside Somali Community
Association
Merseyside Yoruba Community
Centre
Moving Image Workshops
Pagoda Chinese Community Centre
Personal Services Society
Rialto Neighbourhood Council
Royal National Institute For The
Blind
Sahir House
Sheila Kay Fund
Somali Women’s Group
South Liverpool Personnel
The Adolescent & Children’s Trust
(TACT)
The Global Vision Institutions
The Nugent Care Society
The Patients' Council
The People's Centre
Toxteth Metro – Tigers
WHISC
Windsor Street PSP
Yemeni Community Association
Young Persons Advisory Service
Joint Forum
Elimu Academy
Heal 8
Hindu Cultural Organisation
Sudanese Women's Group
Merseyside Somali Community
Organisation
Jamaica Merseyside Association
The use of neurological services by BME communities -–final report / Icarus December 0459
West African Elders
Liverpool Muslim Society
Pakistani Association
Sikh Community Centre
Chinese Recipes For People With
Diabetes
Merseyside Bangladesh Association
HAWA
Chinese Diabetes Education And
Support Group
Merseyside Diabetes Support Group
Appendix Four
Neurological Condition Brief Summary
Ataxia
Ataxia is perhaps one of the most unique problems appearing after damage to the
cerebellum or pathways vital to the cerebellum. It refers to the symptoms of poor
balance and co-ordination present in various neurological disorders.
Ataxia may affect the ability to walk, use the hands or speak clearly, but does not
affect intelligence or mental processes. The symptoms and the severity of all types
of ataxia can vary from person to person - even within the same family.
Friedreich's ataxia is the most common form of hereditary ataxia. It is characterised
by progressive limb and gait ataxia before the age of 25 years, patients may
develop heart and muscle disease. The metabolic basis of Friedreich’s ataxia
remains unknown.
Brain Injury:
Our brains are very complex, controlling all aspects of our functioning from our
thought process, memory, movement and sensation to our behaviour and
personality. If the head sustains a blow the brain can be bruised, shaken or
lacerated. This is known as a traumatic brain injury or, more simply, a head injury.
Different parts of the brain control different functions and so the consequences of
the head injury vary according to the part of the brain involved and the severity of
the injury. Head injury affects no two people in quite the same way and each has a
unique physical, intellectual, emotional or rehabilitation problems.
Rehabilitation is necessary after brain injury to help people to rebuild their lives.
This usually involves the family and a team of health professionals, which may
include physiotherapists, occupational therapists, speech pathologist, psychologist,
neuropsychologist, social worker, dietician, vocational counsellor and rehabilitation
The use of neurological services by BME communities -–final report / Icarus December 0460
medical specialist.
Alzheimer’s Disease:
Alzheimer's Disease is the most common form of dementia. It is characterised by
the slow progressive deterioration in intellectual and adaptive functioning including
thought, memory and language, and ability to carry out daily activities. The age of
onset ranges from the fifth to eighth or ninth decades and women are slightly more
susceptible to the disease than men. A family history of dementia increases the risk
of developing the dementia to between 25% and 50%. A variety of other causes and
risk factors have been suggested; increasing age seems to be a major risk factor,
significant head injury and exposure to toxic substances such as metals and organic
solvents has also been postulated as increasing the risk. Scientists are also finding
increasing evidence that some of the risk factors for heart disease and stroke such
as high blood pressure, high cholesterol and low levels of the vitamin folate may
predispose people to Alzheimer’s.
The cause of the disease is unknown and as yet there is no cure for Alzheimer's
Disease but new drug treatment has been found to slow the progression of the
condition if administered in the early stages.
Cerebral Palsy:
Cerebral Palsy is not a disease or an illness, it is a general term, which refers to a
group of conditions that affect the Central Nervous System and involve motor
disorders, (i.e. physical impairments that affects movement from barely noticeable
to extremely severe). There are several different types of Cerebral Palsy with
differing characteristics that correspond to injuries to different parts of the brain.
The three main types are Spastic CP, Athetoid CP and Ataxia CP.
Cerebral Palsy may be due to events occurring before birth, during birth or in
infancy. Causes may induce infection during pregnancy, exposure to radiation or
toxins, malformations of the brain, premature delivery, diminished oxygen to the
baby during birth, accident, trauma and illness in infancy. It is not a progressive
disorder and therefore the person's level of disability does not significantly worsen
or improve throughout life. It affects between 0.1 % and 0.2% of children and males
and females are affected with equal frequency.
There is no cure for Cerebral Palsy at this time; drug and surgical treatments are
aimed at controlling symptoms and to overcome difficulties in everyday living.
The use of neurological services by BME communities -–final report / Icarus December 0461
Charcot-Marie-Tooth Disease:
Charcot-Marie-Tooth Disease is a hereditary disorder that involves a very slow
progressive muscle 'weakness in the feet, lower legs and hands.
There are two types of Charcot-Marie-Tooth Disease, namely Neuronal and
Hypertrophic, both types affect about equal numbers of males and females, and it is
estimated that 50 in every 100,000 are affected by the disease. In most cases,
Charcot-Marie-Tooth Disease is an inherited disorder, which has an autosomal
dominant pattern of inheritance. This means that it is only necessary for one parent
to have the gene for it to be transmitted to their offspring. Each child of an affected
parent has a 50% chance of inheriting the disorder.
There is no cure for Charcot-Marie-Tooth Disease at this time; management of the
symptoms is the primary aim of treatment, with orthopaedic surgery considered if
foot deformities develop.
Chronic Fatigue Syndrome - (Myalgic Encephalomyelitis - M.E.):
Chronic Fatigue Syndrome (CFS) is a chronic, debilitating disorder, which may begin
following a viral infection. Once the original infection is over its effects persist in the
muscles and brain although the exact pathology of the disorder remains uncertain.
The course of the disorder is extremely variable, with some people recovering to
live normal lives while many become confined to the home or to bed. Most people
recover after six months, while others suffer relapses over months or years.
Relapses may follow too much physical activity, emotional stress or climatic
changes, and may be worse than the original symptoms.
The causes of CFS are not known, it has been suggested that the disorder is
associated with persistent viral infection and a defect in the immune system.
Another hypothesis involves a magnesium deficiency.
CFS is a relatively common disorder affecting about one in 2000 people.
There is no cure for CFS at this time; Vitamin supplements, sensible nutrition,
analgesics, rest and recreation are the only available treatments.
Dystonia:
Dystonia is the term used to describe particular types of involuntary and abnormal
movements and posture that are seen in a variety of neurological disorders.
The use of neurological services by BME communities -–final report / Icarus December 0462
Dystonia can affect just one part of the body, or several different areas. Usually,
other functions of the brain are not affected. For example, a person’s intellect,
personality, memory, emotions, sight, hearing and sexual function are generally
normal.
There are several types of Dystonia which affect both men and woman of all ages. It
can develop in childhood, and is often particularly disabling for children. Dystonia
that manifests itself in adult life tends to remain focal, rather than becoming
generalised.
The causes of Dystonia are not yet fully understood, but it is thought that in some
cases it may be caused by a chemical imbalance in a particular area of the brain
that is responsible for controlling movement. This part of the brain is damaged in
some way causing the wrong muscles to contract when we try to move or the
muscles contract unnecessarily even when 'we are at rest, causing uncontrollable
twitching, tremors and contractions. It is also thought that it could be a malfunction
of the Central Nervous System, probably in the basal ganglia.
The symptoms of Dystonia can often be painful and may vary in their severity from
a minor inconvenience to a total interruption of normal life. Dystonia is an
uncommon condition affecting approximately 391 people per million of population.
There is no cure for Dystonia at this time, however there is adequate drug therapy
available for controlling symptoms. About one in 20 people with Dystonia has a
spontaneous remission, which are most likely to occur in the first five years of the
illness and subsequent relapses are common
Epilepsy:
Epilepsy is the tendency to have repeated seizures, which usually recur
spontaneously. The brain receives and sends messages for tasks such as movement
to take place. If there is a mistake sending or receiving messages, a brief break in
some or all of the brain’s tasks can happen. If this happens, a person may have a
seizure.
For most people there is no known cause for their epilepsy – idiopathic epilepsy.
Sometimes it can be a result of brain injury, birth trauma or stroke -symptomatic
epilepsy. Sometimes it is suspected that there is a physical reason that has yet to
be found –cryptogenic epilepsy. Diagnosis is based on events and there is no
medical test that can prove that someone has epilepsy. Tests such as an EEG can
The use of neurological services by BME communities -–final report / Icarus December 0463
pick up on abnormal activity in the brain but is not grounds enough for a diagnosis.
Once diagnosis has been confirmed, the person will be offered anti-epileptic
medication. One in every 200 children and adults has epilepsy, and it occurs in all
ages, races and social classes.
Huntington's Disease:
Huntington's Disease is characterised by abnormal involuntary movements,
emotional disturbance and intellectual deterioration. Average age at onset is about
40 years for the most common form of the disorder; however some cases were
reported as late as 70 years.
The disease is an inherited condition and there is no cure for it at the present. The
physiotherapist can play an important role in the maintenance of movement and
motor control as 'well as the prevention of complications arising from immobility in
the later stages. Speech therapy may also be involved with maintaining
communication skills. In the UK, Huntington's Disease has been studied more
intensively than in any other part of the world; no obvious pattern emerges to
suggest a single focus of the disease.
Migraine:
Migraine is a neurological condition that may have a number of causes, all of which
result in the abnormal flow of blood to certain areas of the brain. Migraine
headaches can be induced by factors such as stress, diet, hormonal changes or
even the weather. It tends to be more prevalent in families, but the' pattern of
inheritance is not fully understood.
Knowledge of one's own premonitory symptoms can help in preventing or aborting
attacks; and also to maximise drug efficacy. There is no standard drug treatment in
Migraine so the choice of drugs is always made on an individual basis. The most
widely used medications are still the analgesics such as aspirin, paracetamol which
can be bought over-the-counter. Prescriptions can also be made by the doctor for
anti-emetic drugs, which can be taken before the analgesic to improve its speed of
action and reduce nausea.
Huge progress has been made in the last decade for the discovery of the gene
responsible for one in the spectrum of migraines. The GP is the best person to help
sufferers to manage their Migraine, however there are Local Migraine Trust
branches and other organisations whose mission is to help and support sufferer in
every way they can.
The use of neurological services by BME communities -–final report / Icarus December 0464
Multiple Sclerosis:
MS is a medical condition of the central nervous system and since any part of the
system can be affected, it can create widely differing symptoms. It is impossible to
predict to what extent it will affect someone. Some people have a mild form of MS
and never experience any symptoms which prevent them from working. Others
have to cope with varying degrees of disability, which temporarily affect their ability
to do a range of activities. A few people become disabled quickly. The range of
possible symptoms can include problems with vision or sensation, co-ordination or
mobility. Fatigue is common, and symptoms can be made worse by stress.
Muscular Dystrophy:
Any one can get Muscular Dystrophy (MD). The disease is not catching and usually
inherited from a parent or parents through their genes, but sometimes a few cases
have been sporadic. The main features of the disease include; muscle 'weakness,
disturbances in posture and gait, and muscle cramps. The diagnosis is usually
confirmed by the results of a blood test, an electromyography test and a muscle
biopsy. About one in every 2,000 people in the UK may have Muscular Dystrophy,
but the effects are much wider than that; relatives may be carrying the faulty genes
while not showing any symptoms.
There are around 60 different conditions that come under the umbrella of the MD
Campaign. These involve muscles and motor nerves. The charity's information
service can provide details of these. As yet there are no specific cures for any of the
MD. However, there are effective treatments for maintaining independence and
mobility.
The Muscular Dystrophy Campaign provides practical help for individuals and
families with neuromuscular disorders through its network of Family Care Offices, its
hospital-based muscle centres, its expert advice on equipment and adaptation and
its support information service. The charity can also provide grants toward essential
equipment like outdoor electric wheelchairs and special beds.
Parkinson’s Disease:
Parkinsonism refers to a collective group of conditions. Parkinson's Disease (PD) is
the most common form of the condition. It occurs when nerve cells do not work
properly in a particular area of the brain. These nerve cells produce and store
dopamine, the chemical messengers which co-ordinates the body's movements.
The most common age of onset is between 50 and 70 years although younger
The use of neurological services by BME communities -–final report / Icarus December 0465
people can be affected; the cause of the disease is unknown.
Main features of PD are; resting tremor, rigidity i.e. resistance in joints and muscles
when they are passively moved or stiff movements when actively moved; and
bradykinesia which is difficulty in initiating movement. There can be also be a lack
of facial expression and difficulties with swallowing and speech. There is no cure for
PD at present but there is a range of treatments available to help control the
symptoms and maintain quality of life. These include drugs, physiotherapy, and
surgery.
Stroke:
Stroke occurs when the flow of blood to the brain is disrupted. The effects depend
on the area of the brain that is damaged. It is a relatively common neurological
disorder. The risk factors include increasing age, hypertension, smoking, diabetes
and diet.
There is no specific cure. However effective treatment is available in the form of
intensive rehabilitation but recovery varies with each individual.
The use of neurological services by BME communities -–final report / Icarus December 0466