MERSEY NEUROLOGICAL TRUST
        GLAXO CENTRE




THE USE OF NEUROLOGICAL
SERVICES BY BLACK AND
MINORITY ETHNIC
COMMUNITI...
ACKNOWLEDGEMENTS


We wish to thank the following organisations for their co-operation with this research:
Action for Dysp...
The invaluable contribution of Louise Cooke who undertook much of the work on the
interim report (April 2000) is fully ack...
CONTENTS


                                                                                        Page
Acknowledgements  ...
Executive Summary

i. This report presents the findings of research into the use of neurological services by
   Black and ...
4. The final question asks what can be done to try to address inequalities or issues
       about access by members of BME...
vii. To explore with Health and Social Services how information about neurological
   conditions and ethnicity can be made...
xiv.To discuss with Merseycare (NHS) Trust, Central Liverpool Primary Care Trust and
   the Walton Centre general improvem...
INTRODUCTION


1. This report presents the findings of research into the use of neurological services by
      Black and m...
4. The findings from the 2000 interim report are drawn on in this report and
   comparisons made with them. Consideration ...
8. As with the previous study, this research has mainly concentrated on services
     provided by neurological organisatio...
Definitions

      Neurological conditions

10.The current research has relied on the previous study’s definition of a neu...
Research Findings

       Variation of incidence levels

13.The state of knowledge about the relationship between ethnicit...
Ataxia

16.The Ataxia Association has identified anecdotal accounts of a possible relationship
       with ethnicity, but ...
However, another research study19 is at variance with these findings, recording the
      condition occurring at a steady ...
23.Huntington’s disease appears to be rare in African, Asian, Chinese and Japanese
      people, though there is only limi...
27.The Myasthenia Gravis Association’s literature suggests that MG occurs in all ethnic
       groups at roughly the same ...
30.The current level of knowledge about ethnic variation in neurological conditions
      makes it unrealistic to attempt ...
34.The interim report recorded only three neurological organisations undertaking any
   ethnic monitoring, though another ...
members accessing statutory and voluntary sector health provision is suggested by
      these findings.


Access to servic...
lack of knowledge about health provision and cultural factors. It’s also relevant to
      note that in its review of the ...
on a direct bus route. A lack of commitment by agencies to addressing barriers
      could act as a barrier in itself.



...
•    Wrong assumptions by both White and Black people that members of BME
           communities are not affected by certa...
the population ages, and that much more needs to be done to bring the medical and
      social service professionals toget...
and advocacy workers were felt to play a significant role for those who did not have
   English as a first language.


   ...
Charcot Marie Tooth

60.Language difficulties and lack of knowledge about what services are available.
   People were deal...
The Multiple Sclerosis Society

67.Some minority ethnic communities, it was felt, hide disabilities behind closed doors
  ...
Different Strokes

74.The usual barriers.


       Tourette Syndrome

75.They had no direct experience but expect they do ...
78.This group’s experience and satisfaction with non-medical services also varied and
       again, two people felt their ...
ideas including regularly reviewing health services with BME groups to ensure they
      are culturally, linguistically an...
Polish, and Welsh. The following suggestions were put forward as a basis for an
   action plan in 2000:
   •     Organisat...
Raising awareness:
   •     Videos were a big success but need to be translated into other languages
   •     Events and c...
89.A part time officer had been appointed to improve access to services from Black and
       minority ethnic communities....
MS (The Multiple Sclerosis Society)

97.One of the five national organisations contributing to the publication ‘Towards
  ...
•      Develop joint working on projects that offer practical solutions to help staff meet
       organisational as well a...
available in Punjabi, Hindi, Urdu, Bengali, Gujerati, and Welsh and selected leaflets
   on audiotape.


   Syringomyelia ...
Evaluation of the Glaxo BME outreach project


Introduction


104.This section of the report presents the main findings of...
107.This evaluation is based on review of background papers and reports including
      funding applications58, interviews...
111.In assessing the effectiveness of outreach work with BME communities, the
     different methods he has employed had b...
likely to be limited. Lack of resources had not allowed a local presence, although
   recently office space within the Gra...
fully recorded60 for the outreach project reflecting both sensitivities and practical
     difficulties in ethnic monitori...
organisations had had contact or involvement with the project and two thirds had
   received visits from the project worke...
125.A number of suggestions were made about improving the effectiveness of the
   project including regular contact with c...
129.Not withstanding the above it seems clear that this project has in general been
   viewed as a positive initiative and...
133.One outcome of this initiative is seen as being improved capacity by consortium
   members to work with BME communitie...
Conclusion

136.This research study has set out to answer four key questions; the first of these is
   whether there is th...
Paul Kyprianou and Maria Byrne-McCann
Paul Kyprianou and Maria Byrne-McCann
Paul Kyprianou and Maria Byrne-McCann
Paul Kyprianou and Maria Byrne-McCann
Paul Kyprianou and Maria Byrne-McCann
Paul Kyprianou and Maria Byrne-McCann
Paul Kyprianou and Maria Byrne-McCann
Paul Kyprianou and Maria Byrne-McCann
Paul Kyprianou and Maria Byrne-McCann
Paul Kyprianou and Maria Byrne-McCann
Paul Kyprianou and Maria Byrne-McCann
Paul Kyprianou and Maria Byrne-McCann
Paul Kyprianou and Maria Byrne-McCann
Paul Kyprianou and Maria Byrne-McCann
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Paul Kyprianou and Maria Byrne-McCann

  1. 1. MERSEY NEUROLOGICAL TRUST GLAXO CENTRE THE USE OF NEUROLOGICAL SERVICES BY BLACK AND MINORITY ETHNIC COMMUNITIES FINAL REPORT December 2004
  2. 2. 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. 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. 2 The use of neurological services by BME communities -–final report / Icarus December 04
  3. 3. 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 ICARUS Gostin House 32-36 Hanover Street Liverpool L1 4LN Tel/Fax 705 3000 e-mail: kyp@icarus.uk.net The Glaxo Neurological Centre wishes to record its appreciation for the financial assistance provided by the National Lottery Charities Board in funding this research 3 The use of neurological services by BME communities -–final report / Icarus December 04
  4. 4. 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 4. Glossary of Neurological Terms and Mind-map of conditions and symptoms 4 The use of neurological services by BME communities -–final report / Icarus December 04
  5. 5. 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. 5 The use of neurological services by BME communities -–final report / Icarus December 04
  6. 6. 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. vi. To secure funding for the Outreach Worker’s post and to reconsider the remit of this post. 6 The use of neurological services by BME communities -–final report / Icarus December 04
  7. 7. 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, 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 7 The use of neurological services by BME communities -–final report / Icarus December 04
  8. 8. 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. 8 The use of neurological services by BME communities -–final report / Icarus December 04
  9. 9. 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 information directly from members of BME communities, including the experience of people who had been diagnosed as having a neurological condition. 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 9 The use of neurological services by BME communities -–final report / Icarus December 04
  10. 10. 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 • 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 10 The use of neurological services by BME communities -–final report / Icarus December 04
  11. 11. 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)  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 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%. 11 The use of neurological services by BME communities -–final report / Icarus December 04
  12. 12. 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 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 12 The use of neurological services by BME communities -–final report / Icarus December 04
  13. 13. 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. 15.The following combines the findings of the research review and the information coming from the survey of neurological organisations:13 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 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 13 The use of neurological services by BME communities -–final report / Icarus December 04
  14. 14. 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 other research in the USA17 and other parts of the world that suggests ethnicity is a factor in the incidence of Cerebral palsy. 18 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 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 14 The use of neurological services by BME communities -–final report / Icarus December 04
  15. 15. 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 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) 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 15 The use of neurological services by BME communities -–final report / Icarus December 04
  16. 16. 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) 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) 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 25 op cit 19 26 op cit 20 16 The use of neurological services by BME communities -–final report / Icarus December 04
  17. 17. 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 evidence 29to suggest that the condition is just as common among Black populations 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 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 30 The SANDI project; University of Texas 04 17 The use of neurological services by BME communities -–final report / Icarus December 04
  18. 18. 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. 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. 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 18 The use of neurological services by BME communities -–final report / Icarus December 04
  19. 19. 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 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 19 The use of neurological services by BME communities -–final report / Icarus December 04
  20. 20. 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  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, 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 Sefton Health Authority and Sefton Council 35 ‘Race Equality impact assessment,’ CRE, 2003 20 The use of neurological services by BME communities -–final report / Icarus December 04
  21. 21. 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 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 36 ‘Health and Social Care’, CRE 2002 37 ‘Eliminating health disparities: measurement and data needs’, The National Academics Press 2004 21 The use of neurological services by BME communities -–final report / Icarus December 04
  22. 22. 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 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: 38 Russel, A. ‘A preliminary research study into the use of voluntary sector services by people from minority ethnic communities’, SCOPE, 1996 22 The use of neurological services by BME communities -–final report / Icarus December 04
  23. 23. • Wrong assumptions by both White and Black people that members of BME communities are not affected by certain conditions39 • 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 report 44argues 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 problem for BME communities is growing as 39 Comment made in a MS newsletter by a Black patient 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. 23 The use of neurological services by BME communities -–final report / Icarus December 04
  24. 24. 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 53.Barriers mentioned were the difficulty of getting a diagnosis and lack of interest of doctors, poor referral services, misdiagnosis and inadequate resources. Language 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 24 The use of neurological services by BME communities -–final report / Icarus December 04
  25. 25. 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. 25 The use of neurological services by BME communities -–final report / Icarus December 04
  26. 26. 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. 26 The use of neurological services by BME communities -–final report / Icarus December 04
  27. 27. 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 Stroke Association 73.Lack of awareness about the existence of the association. 27 The use of neurological services by BME communities -–final report / Icarus December 04
  28. 28. 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 guide 47 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 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. 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. 28 The use of neurological services by BME communities -–final report / Icarus December 04
  29. 29. 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. 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 49 op cit 44 50 New Deal for Communities: race equality guidance’, October 2004, The office of the Deputy Prime Minister 29 The use of neurological services by BME communities -–final report / Icarus December 04
  30. 30. 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: 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, 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 30 The use of neurological services by BME communities -–final report / Icarus December 04
  31. 31. 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 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: 31 The use of neurological services by BME communities -–final report / Icarus December 04
  32. 32. 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 • 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 32 The use of neurological services by BME communities -–final report / Icarus December 04
  33. 33. 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. Huntington’s Disease Association 94.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. 53 op cit 44 33 The use of neurological services by BME communities -–final report / Icarus December 04
  34. 34. 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. 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 54 op cit 44 55 op cit 27 56 op cit 44 34 The use of neurological services by BME communities -–final report / Icarus December 04
  35. 35. • 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. 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 57 op cit 44 35 The use of neurological services by BME communities -–final report / Icarus December 04
  36. 36. available in Punjabi, Hindi, Urdu, Bengali, Gujerati, and Welsh and selected leaflets on audiotape. Syringomyelia (ANTS) 103.Translation can be provided on request. 36 The use of neurological services by BME communities -–final report / Icarus December 04
  37. 37. 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. Evaluation 37 The use of neurological services by BME communities -–final report / Icarus December 04
  38. 38. 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. 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. 58 This evaluation does not comment directly on the monitoring, or output data that has been required by the National Lottery. 38 The use of neurological services by BME communities -–final report / Icarus December 04
  39. 39. 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 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 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. 39 The use of neurological services by BME communities -–final report / Icarus December 04
  40. 40. 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 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 40 The use of neurological services by BME communities -–final report / Icarus December 04
  41. 41. 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 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 106 people have used the outreach service and neurological information widely distributed amongst 60 BME communities, though not all contacts have been recorded 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 41 The use of neurological services by BME communities -–final report / Icarus December 04
  42. 42. 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 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. 42 The use of neurological services by BME communities -–final report / Icarus December 04
  43. 43. 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 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. 43 The use of neurological services by BME communities -–final report / Icarus December 04
  44. 44. 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 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. 44 The use of neurological services by BME communities -–final report / Icarus December 04
  45. 45. 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 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. 45 The use of neurological services by BME communities -–final report / Icarus December 04
  46. 46. 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 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. 46 The use of neurological services by BME communities -–final report / Icarus December 04

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