paul kyprianou and maria byrne-mccann

ACKNOWLEDGEMENTS

We wish to thank the following organisations for their co-operation with this

research: Action for Dysphasic Adults, Alzheimer’s Disease Society, ANT

Society, Association for Spina Bifida and Hydrocephalus, BASIC, British Brain

and Spine Foundation, British Epilepsy Association, CANDID, Charcot Marie

Tooth Association, Different Strokes, Dystonia Society, Friedreich’s Ataxia

Group, Huntington’s Disease Association, International Autistic Research

Organisation, ME Association, Migraine Action Association, Motor Neurone

Disease Association, Multiple Sclerosis Society, Muscular Dystrophy

Campaign, Myasthenia Gravis Association, National Meningitis Trust,

Neurofibromatosis Association, Neuropathy Trust, Sarah Matheson Trust,

Scope, Stroke Association, Tourette Syndrome (U.K.) Association, and the

Parkinson’s Disease Society.

We would also like to record our appreciation of the help provided by

Caroline Rand, Abdul Razak and Ben Jones of Liverpool Health Authority, Dr

Katy Gardner Princes Park Health Centre, Sam Semoff Toxteth Health and

Community Care Forum, the Health Link Workers, Guy Soulsby, Alison Leak

and Mei Yui of Liverpool Social Services, Eunice Khan and Brian Hartgen of

the RNIB, Carmel Smith Sefton Social Services / Walton centre, Margaret

Harding Walton centre, Afrah Qassim, Faiza Alasaly, Yasmin Ismail, Sue Xiao,

Annie Ho, Mu Fun Lau, Sirad Elmi, and Sheila Scott of North Mersey

Community (NHS)Trust, and all those organisations who took the time to

complete the questionnaires.

In addition thanks are due to Dr Ian Williams of the North West Clinical

Neuroscience Project for his expert advice on the Neurological Conditions

and Symptoms mind maps.

The use of neurological services by BME communities -–final report / Icarus December 042

Special thanks are also due to those individuals who agreed to be

interviewed to provide insights into the experience of people who have been

diagnosed as having a neurological condition.

The invaluable contribution of Louise Cooke who undertook much of the work

on the interim report (April 2000) is fully acknowledged.

Finally we would like to thank those staff and volunteers of the Glaxo

Neurological Centre who have helped with this study and in particular the

support and assistance given by Maureen Kelly, Brian Simpson, Andrew

Lynch and Desmond Chow.

Paul Kyprianou and Maria Byrne-McCann

Icarus December 2004

ICARUSGostin House32-36 Hanover StreetLiverpool L1 4LNTel/Fax 705 3000 e-mail: [email protected]

The Glaxo Neurological Centre wishes to record its appreciation for the

financial assistance provided by the National Lottery Charities Board in

funding this research


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


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.


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.

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

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.


INTRODUCTION

1. This report presents the findings of research into the use of neurological

services by Black and minority ethnic (BME) communities1. The Glaxo

Neurological Centre2 commissioned this research, which up-dates the

interim study undertaken in April 20003 and also includes an evaluation of

the Centre’s BME outreach project.

Interim study

2. The previous study sought to identify the reasons for the low take-up of

the Glaxo Centre’s services by people from BME communities. More than

500 had been in contact with the Working Life project during the last 12

months (1999/2000), but only six of these were from BME communities.

Anecdotal evidence also suggested a similarly low take-up of other

neurological services by people from BME communities4.

3. The Glaxo Centre was concerned to find out how it might address the low

take-up of its services. It was decided to look at the experience of other

neurological voluntary organisations and to see how they responded to

the needs of BME communities. In addition, it was felt important to gather

1 We recognise that the terminology used in respect of ethnicity is contested; the term BME

is in our experience the most widely accepted form in use at this time.

2 The Glaxo Neurological Centre is now known as the Mersey Neurological Trust – Glaxo

Centre. It is a non-medical centre providing information, support and advice to people who

have been diagnosed with a neurological condition mainly within the Merseyside area. The

Centre acts as a contact point and source of support for many local neurological charities

throughout Merseyside and the northwest (see appendix one for further details about the

Centre).

3 The use of neurological services by Black and ethnic minority communities; Glaxo

Neurological

Centre, Icarus April 2000.

4 The Birmingham Ethnic Minority Outreach Project – Final Report; Baxter C. circ 1999


information directly from members of BME communities, including the

experience of people who had been diagnosed as having a neurological

condition.

4. The findings from the 2000 interim report are drawn on in this report and

comparisons made with them. Consideration is also given as to the extent

to which recommendations identified in the interim report have been

acted upon. Further recommendations are made in the conclusion of this

report.

5. As well as up-dating the previous study, this report presents the main

findings of the evaluation of the work of the Glaxo Centre’s BME outreach

worker. The creation of this post has been one of the ways that centre has

directly tried to address the needs of BME communities in the intervening

period since the previous report. An assessment of the possible future

direction of this work has also been made.

6. This report comes at a time when there are important developments in

respect of neurological services with the introduction and implementation

of the National Service Framework (NSF) for long-term conditions and the

NHS Improvement Plan (June 2004). As part of the former, a major

research initiative is shortly to take place, that has to some extent been

influenced by the findings in the interim study and which identifies the

need for research to generate further knowledge about the needs and

experience of BME communities. This would seem to provide an

opportunity to address the inevitable limitations in the scope and depth of

this research.

Research Focus

7. This research has focused on trying to answer the following questions:

Is there evidence of ethnic variation in the incidence of neurological

conditions – if so this will have implications in respect of targeting of

services and in interpreting information about their current use by

members of BME communities


What differences, if any, are there in access to neurological services by

members of BME communities as opposed to the general population

What might explain any such difference

What actions can be taken to try to address any inequalities or issues

about access by members of BME communities

8. As with the previous study, this research has mainly concentrated on

services provided by neurological organisations in the voluntary sector.

This has been contextualised with reference to the experience of BME

communities’ access to health services in general and to a lesser extent

NHS neurological services.

Methods used

9. A number of different methods have been employed in undertaking this

research and the evaluation of the BME outreach project:

A review of research findings to identify the current state of knowledge

in respect of the relationship between ethnicity and the incidence of

neurological conditions, this has included internet search and also

survey information and accessing census and ethnic monitoring data

A survey of voluntary sector neurological organisations to find out

about access to their services by members of BME groups and how

they responded to the needs of these communities, and for those who

took part in the previous study, to see what changes if any have

occurred. These organisations were also asked about their knowledge

of ethnic variation in respect of the particular neurological condition

they were concerned with (see appendix two for list of organisations

taking part in the 2000 survey and this research)

A survey of local (Merseyside) BME community and voluntary sector

organisations and statutory sector agencies as part of the evaluation of

the outreach project and to determine their views about its future

direction (see appendix three)


Interviews with key informants to gain differing perspectives on both

the research and evaluation. This has included health workers, Glaxo

Centre staff, BME community leaders5 and a small number of service

users

Definitions

Neurological conditions

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

neurological condition as being ‘any condition that affects the brain and

nervous system.’ This is an inclusive categorisation that encompasses the

groups that the Glaxo Centre works with, and includes brain and spinal

injury. In considering the relationship between brain function and mental

state, we have stayed with the inclusion of autism as a neurological

condition and continued with the exclusion of schizophrenia. It’s

acknowledged that defining neurological conditions remains a subject of

debate.

‘Race’ and Ethnicity

11. While ‘race’ continues to have a currency in ‘common sense’

explanations of differences between ethnic groups, its status as an

objective biological category has been discredited. Ethnicity has much

greater validity as a concept and has a clear legal definition, though it is

not without difficulties as is illustrated by the 2001 census continued use

of the category Asian. It can be argued that there continues to be a lack

5 The interim study researched the experience of the largest BME groups on Merseyside as identified in the 1991 census: Chinese, Black British and African Caribbean, Somali, Asian, and Yemeni, but excluding the Irish community. It was suggested that the particularly poor health profile of Irish people in Britain (they are the only group whose health worsens on migration to this country) would merit a separate study. This study has also concentrated on the same groups, though it is relevant to note the 2001 census shows some significant changes in the ethnic profile of Merseyside. BME groups continue to be concentrated within Liverpool at 8.2% of the overall population (3.8% in 1991), and at significantly higher levels within a small number of inner-city wards. However, the largest group in the City is now ‘white other’ at 15.5% followed by the Irish at 14.9% and Chinese at 14.3%.


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


Research Findings

Variation of incidence levels

13. The state of knowledge about the relationship between ethnicity and

the incidence of neurological conditions appears to have changed little

since 20009. There is a paucity of research into the incidence of

neurological illnesses among Black and ethnic minority communities in

Britain10. The evidence that does exist suggests an absence of any

significant relationship. The most important exception to this is

Cerebrovascular disease (Stroke) which is higher among people from

Caribbean, African and Asian populations.

14. The main focus of the research that has taken place is on the

relationship between genetic or hereditary factors and ethnicity. Pearce et

al11 suggest that genetics plays only a small part in ethnic differences in

health12. They comment that ethnicity is a complex construct that

includes biology, history, cultural orientation and practice, language,

religion and lifestyle, all of which can affect health. They also observe that

access to healthcare has a huge impact on health as does racism,

discrimination and cultural stereotyping.

9 Our literature review was supplemented by information from each of the national neurological organisations surveyed who were asked about their knowledge of any relationship between the neurological condition they were concerned with and ethnicity. An extensive Internet search for all the neurological conditions covered in this report was also undertaken from both national and international sources. We were able to identify only a limited amount of new research that was relevant to this study.

10 op cit 4: Baxter from a limited review of the literature suggests that there has been little work in connection with ethnicity and neurological disorders undertaken in the UK. What research has been undertaken, in the main has taken place in the USA. This still appears to be the case from our review of the research literature.

11 ‘Genetics, race, ethnicity and health’, Pearce et al, 2004

12 op cit 4: Baxter has suggested that there are significant variations in incidence levels worldwide and that these may be associated with ethnicity


15. The following combines the findings of the research review and the

information coming from the survey of neurological organisations:13

Ataxia

16. The Ataxia Association has identified anecdotal accounts of a possible

relationship with ethnicity, but there is no research evidence at this time

to support this.

Alzheimer’s

17. The Alzheimer’s Association predicts an increase in the numbers of

people from BME communities in Britain who will experience dementia as

the proportion of older people in these populations’ increases. At present

there are about 14,000 people with dementia among ethnic minority

communities. There does appear to be some ethnic variation in the

relative incidence levels, with reported increased frequency of dementia

amongst the South Asian community and African Caribbean’s linked to

diabetes,14 and increased risk factors for Africans, Inuits, Amerindians and

Northern Europeans15

Cerebral Palsy (CP)

18. A higher prevalence of Cerebral Palsy has been found amongst the

Asian population of Bradford. Sinha et al16 suggest that consanguinity is a

factor in this, with a high percentage of first cousin marriages and that

this points to a probable genetic aetiology in a significant number of

cases of Cerebral Palsy amongst the Asian community. They also highlight 13 The source of the information provided by neurological organisations has not always been given by them and in some cases we have not been able to identify the supporting research evidence 14 The Journal of Neuroscience (December 14 2004) states that diabetes may raise the risk of Alzheimers. Anthony J Brown M.D. in Reuter’s Health (17-5-04) says that a person is 65% more likely to develop Alzheimers if they have diabetes. As there is a higher incidence of diabetes among African Caribbeans and South Asian communities this may be worthy of note.

15 Dr William B Grant from the Sunlight, Nutrition and Health Research Centre states that the risk factors are both genetic and environmental. The primary genetic risk factor is the presence of the APOE e4 allele, which is more common among Africans, Inuits, Amerindians and Northern Europeans.

16 Sinha, G. et al ‘Prevalence and type of cerebral palsy in a British ethnic community: the role of consanguinity’, Developmental Medicine & Child Neurology 1997,39: 259-262


other research in the USA17 and other parts of the world that suggests

ethnicity is a factor in the incidence of Cerebral palsy.18 However, another

research study19 is at variance with these findings, recording the condition

occurring at a steady 1 in 400 births irrespective of ethnicity.

Cerebrovascular Disease (CVD) / Stroke

19. There is a very significant degree of variation in the incidence of CVD

or stroke between ethnic groups with much higher rates amongst people

from the Caribbean, the African Commonwealth and the Indian

subcontinent20.

20. The Stroke Association is carrying out research to investigate ethnic

differences in recognition that the Black population (Asian and African) is

at least twice as likely to have strokes than the White population after

adjustment for age and gender. This five-year research programme

(begun in 2000) aims to inform the development of preventive strategies

for stroke.

21. Research into the aetiology of CVD has tended to focus on genetic or

inherited predisposition. For Asians diabetes is a key factor in the higher

levels of the incidence of CVD, while hypertension is associated with

higher mortality rates for African Caribbean and African Commonwealth

migrants and also Asians.21 It also appears that after the initial brain

damage caused by stroke the consequences may be more severe

17 Peristein and Hood 1964, Blair and Stanley 1982, Arens and Molento 1989, Al-Rjeh et al 1991 – all cited by Sinha op cit 13

18 Murphy et al 1993, as cited by Sinha op cit. 13

19 Russel, A. ‘A preliminary research study into the use of voluntary sector services by people from minority ethnic communities’, SCOPE, 1996

20 Balarajan, R. and Bulsu, L. ‘Mortality among immigrants in England and Wales’ 1990 as cited by Smaje. C, op cit 7

21 Cruickshank, J ‘An outline of Cerebrovascular and renal disease’, 1989 as cited in Smaje C. op cit 7


amongst African Americans than Caucasians. High blood pressure may be

a factor in this as it contributes to haemorrhagic strokes.

22. Current research is looking at sickle cell disease, which is the

commonest cause of stroke in childhood and which has a higher incidence

amongst African Caribbean populations. Another study is looking at

whether patients’ own beliefs about their prospects of recovery vary

between ethnic groups. This may be an important factor in the success of

rehabilitation after stroke.

Huntington’s Disease (HD)

23. Huntington’s disease appears to be rare in African, Asian, Chinese and

Japanese people, though there is only limited research in this area.22

Migraine

24. There is no evidence of significant variation in the incidence of

migraine between ethnic groups. However the prevalence rates are

reported to be different in China than other parts of the world.

Motor Neurone Disease (MND)

25. The Motor Neurone Disease Association is aware that the incidence

level of MND is lower in some ethnic minority groups. A ten-year research

study23 of the mortality rates for MND has found significant ethnic

variation, with Asian males (in England and Wales) having only half the

mortality rate of the population as a whole. Asian females had a still lower

mortality rate at a fifth of the average, while the rate among Caribbean

migrants was also lower. However, another study suggests that the

incidence of MND is very similar for all ethnic groups24.

Multiple Sclerosis (MS)

22 Swash and Schwartz, 1989 as cited by Baxter C. op cit 4

23 6: Elian, M. and Dean, G. Journal of Neurology, Neurosurgery and Psychiatry, 1993 Vol. 56

454 –457 24 Dean, G. et al, British Journal of Preventive and Social Medicine, 1997 Vol. 31 141 –146


26. The Multiple Sclerosis Society recognises that there are ethnic

differences in the incidence of MS. Lower rates of MS have been

identified amongst Asian, West Indian and African migrants25. A study26 of

hospital discharge rates has also identified variations between ethnic

groups for MS. Migrants from Asia, Africa and the West Indies were shown

to have a greatly reduced risk of MS compared to people born in Britain.

The incidence of MS amongst the children of these groups though was

close to that of the general population. This study also found the

incidence of MND to be very similar amongst all ethnic groups.

Myasthenia Gravis (MG)

27. The Myasthenia Gravis Association’s literature suggests that MG occurs

in all ethnic groups at roughly the same level of incidence. A recent study

undertaken for the association however found that there is some

indication of ethnic variation in respect of the rarer inherited

myasthenias27. Consanguinity appears to be the factor influencing the

apparent higher incidence amongst some Asian groups. This particular

form of MG is commoner in children of cousin marriages, though the low

levels of incidence make accurate statistical analysis difficult. The

incidence of congenital myasthenia also appears to be slightly higher but

there has been no specific research on this.

Parkinson’s Disease (PD)

28. Research into PD has in the main focused on White populations, with

some research suggesting a higher prevalence in these groups and the

possible role of environmental factors.28 However there is evidence29to

suggest that the condition is just as common among Black populations

25 op cit 1926 op cit 20

27 ‘Involving members of BME groups – interim report April 04, Myasthenia Gravis Association, Icarus

28 Mutch 1988 and 1990 as cited op cit 4

29 Collier D. London Institute of Psychiatry as cited in ‘Seeking Solutions, Research Information; summaries of medical and welfare research’, Parkinson’s Disease Society 01


and that the symptoms are more aggressive and less responsive to some

forms of treatment. An international research project in Britain, USA and

India is trying to determine whether there are environmental, medical or

genetic differences that may account for this.

Spina Bifida & Hydrocephalus

29. There appears to be some variability in the incidence of Spina Bifida,

with a current joint USA and Canadian research programme trying to

establish the reasons for this.30 The incidence of Spina Bifida is higher

amongst Celtic groups and Sikhs from East India.

Ethnic Monitoring

30. The current level of knowledge about ethnic variation in neurological

conditions makes it unrealistic to attempt to quantify the overall

difference of incidence between ethnic groups. With the exception of CVD,

the difference between ethnic groups in respect of hereditary or genetic

variation appears limited and an increased risk in one area may be

balanced by a relative decreased risk for other conditions.

31. Other factors that may affect ethnic groups in different ways such as

cultural practices, environment, social class and poverty may have an

important impact on the incidence of some neurological conditions.

However, our understanding and knowledge of these is again very limited.

At this time, given these limitations, it is reasonable to base estimates of

the number of BME community members who may have a neurological

condition on demographic data and to use this as the basis of comparison

in respect of access to health services.

30 The SANDI project; University of Texas 04


32. The Neurological Alliance31 has estimated that over 10 million people

are living in the UK with a neurological condition, which has a significant

impact on their lives. Nationally this would mean that 1.300,000 members

of BME communities have a neurological condition, given that they

represent 13% of the population in the 2001 census.

33. The importance of ethnic monitoring for neurological conditions was

emphasised in the interim report, as was the lack of such data. Not a

great deal has changed in the intervening period. Dr Zaibby Shaikh,

director of EACH32 has recently commented on the virtual total absence of

statistics from service providers on BME patients with neurological

conditions, making the point that ethnic monitoring ‘is the tool that helps

you establish an ethnic breakdown. Being aware of your local

demographic population is essential if you want to service this group.’

There is a lack of evidence nationally dealing with prevalence and

incidence of neurological conditions across all communities.

34. The interim report recorded only three neurological organisations

undertaking any ethnic monitoring, though another two said they were

about to. In 2004 one of these had stopped collecting such data because

of resource constraints and there were no new organisations reporting

that they were undertaking ethnic monitoring.

35. The pioneering work undertaken by the Princes Park Health Centre in

Liverpool, which has been promoted by the Department of Health as a

model of good practice, has only now begun to be implemented by 15

other local GP practices in the Central PCT area, but it still waits

implementation elsewhere. However, the Liverpool Health Trusts since

1999/2000 now return both inpatient and outpatient ethnic monitoring

data. This should make it more possible to produce an accurate estimate

31 ‘ Neuro umbers – a brief review of the numbers of people in the UK with a neurological condition’, The Neurological Alliance, April 03

32 EACH is a leading Asian counselling service and this comment was made in an interview to Healthweb 22.9.04


of the numbers of people from BME communities diagnosed with a

neurological condition.

36. In respect of neurological conditions, the Walton Neurosciences Unit,

which serves patients in the North West, undertakes ethnic monitoring for

both inpatients and outpatients. In the period from 1.12.03 to 30.11.04 it

recorded 2% of its patients as being from BME communities. The BME

population for the North West is 7.9% and for Liverpool, where the unit is

located the BME population is 8.2%, suggesting an under-representation

of patients from these communities.

37. Walton is one of three neuroscience services for the population of the

North West. The other two are the Royal Preston Hospital and Hope

Hospital, Salford. Both undertake ethnic monitoring. The Royal Preston

carries out a form of ethnic monitoring in which it can run a query by

diagnostic coding of ethnic groups. However this depends on the accurate

assignment of the ethnic code, and there appears to be a high percentage

that are unspecified. Hope Hospital in Salford records ethnicity of

inpatients with both the diagnosis and procedures that the patients have

had.

38. The extent and progress of ethnic monitoring is a cause for concern

that still needs to be addressed. A rigorous assessment of the percentage

of BME community members accessing statutory and voluntary sector

health provision is suggested by these findings.

Access to services

39. The interim study noted a number of factors that previous research

had identified as acting as barriers to BME communities accessing health

services in general: 33/34

33 Health Needs Assessment of Black & Minority ethnic Communities in Liverpool’, 1995 Eolas for Liverpool Health Authority

34 ‘Health and Social Care for older Black and minority ethnic Residents of Sefton’ Eolas 1999, PSS and


Language difficulties affecting knowledge about services and

treatments and lack of appropriate information - need for translated

material and disseminating information in other forms

Cultural differences affecting expectations and understanding of both

conditions and treatments

Staff attitudes - including awareness about cultural issues; there may

be a failure to take account of dietary and religious requirements

Surgery and clinic opening times - a problem faced by Chinese and

Asian community members working in the catering sector

Lack of female staff - a particular issue for Muslim women

Racism

Level of awareness amongst recent arrivals of ‘how the system works’

A failure to appreciate the existence of important sub-groups within

larger minority ethnic groups

An assumption that minority ethnic communities ‘look after their own’

Timing of events may clash with religious festivals or prayer times

40. More recently the Commission for Race Equality (CRE)35 has stated

that BME communities continue to have poorer access to health services

and lower levels of satisfaction (as well as generally poorer health).

Continuing barriers that BME communities experience in accessing health

services included language difficulties, lack of knowledge about health

provision and cultural factors. It’s also relevant to note that in its review

of the promotion of race equality among Strategic Health Authorities,36

the CRE found a lack of response and progress being made.

41. Another recent report37 suggests that disparities in health care may or

may not be due to conscious or unconscious discrimination. There may be

other causes such as lack of access to particular kinds of health care, poor

communication between the patient and provider, lack of information and

Sefton Health Authority and Sefton Council

35 ‘Race Equality impact assessment,’ CRE, 2003

36 ‘Health and Social Care’, CRE 200237 ‘Eliminating health disparities: measurement and data needs’, The National Academics Press 2004


individual behaviour. Patient preferences may themselves be affected by

past experiences of discriminatory behaviour in a medical or other

setting.

42. Key informants from BME communities in Liverpool surveyed for this

research identified many of the same barriers. As was found in the CRE

study, lack of people’s awareness of services and lack of knowledge on

how to access services were seen as significant issues. In addition

communication problems, jargon, and terminology were viewed as factors

that could contribute to medical assessments not being properly

undertaken. Lack of information was again raised, as were language and

cultural factors.

43. Concerns over legal status were identified as a possible obstacle in

seeking help for refuges and asylum seekers. It was suggested that

Chinese people were much more likely to look for help from within their

own community than seek external assistance, while for Muslim women

there was the concern of having to see male medical staff. Perceptions

about health agencies and a questioning of whether they understood the

needs of BME patients was raised along with the need to have BME staff

to work with different communities.

44. The stigma of neurological illnesses and traditions and taboos were

identified as factors for some BME communities. More generally fear and

the practical consequences of an illness e.g. loss of speech, were also

considered as barriers. Physical access was also a factor such as the

transport if a medical centre was not on a direct bus route. A lack of

commitment by agencies to addressing barriers could act as a barrier in

itself.

Barriers re accessing neurological services

45. While there is an increased recognition of the barriers that BME

communities can face in accessing health services, inequality in access

remains an important issue. Though there is limited available evidence of


the barriers faced by BME patients with neurological conditions, they may

in some respects be particularly disadvantaged.

The interim study

46. The interim study identified a number of specific issues that BME

members experienced in accessing the services of voluntary neurological

organisations. These included the following:

The image of the neurological own organisation being perceived as

white and middle class

Services not being designed to meet the needs of individuals from BME

communities38

The belief that for some ethnic minority communities particular

neurological conditions may be treated as a source of disgrace, to be

hidden away

The simple lack of knowledge about the services these voluntary

organisations provide as possibly the most significant barrier

A ‘colour blind’ approach within the organisation that argues that

everyone is treated entirely the same, without recognising or

addressing factors that may exclude or disadvantage different ethnic

groups. This approach in itself contributes to the maintenance of the

barriers identified above.

47. In addition, other issues in accessing health services were identified:

Wrong assumptions by both White and Black people that members of

BME communities are not affected by certain conditions39

38 Russel, A. ‘A preliminary research study into the use of voluntary sector services by people from minority ethnic communities’, SCOPE, 1996

39 Comment made in a MS newsletter by a Black patient


Misdiagnosis because of difficulties in assessing mental competence

due to language difficulties and cultural barriers40/41/42

A lack of, or ineffective ethnic monitoring meaning that services may

not be aware that there is an access issue for BME community

members

48. A recent study43 has suggested that there may be an issue around the

western model of diagnosing illnesses and of patients being put off

attending clinics by the specialist neurological language, attitudes and

tests. Another recent report44argues that BME members with neurological

conditions are being given culturally inappropriate services and that there

is ‘cultural resistance’ within statutory and voluntary sector health care

services in addressing this. This report suggests that BME communities

have been ill equipped to deal with neurological conditions and their lack

of knowledge about them has lead many to fall through the ‘cracks in the

system’, with conditions often ignored or presented very late because of

the associated stigma. This in turn has made it more difficult to treat the

condition.

49. An Alzheimer’s project45 has recently argued that BME families in

Britain still struggle to get the support and treatment that’s appropriate

for people of a different cultural background. Professionals suggest the

40 As cited by Baxter in reference to a study of Alzheimer’s disease op cit 4

41 This has been suggested in a study of MS where it is thought doctors were only picking up on severe cases and missing milder ones; Elain and Dean 1993a ac cited by Baxter op cit 4 42 Diagnostic confusion between MS and tropical spastic paraparesis has also been reported in another study involving black Caribbean’s; Cruickshank et al as cited by Baxter op cit 4

43 op cit 25

44 MacAttram M. ‘Towards Diversity – a practical guide for improving local support for Black and Asian people living with a neurological condition’, published by the Parkinson’s Disease Society, 2004

45 “Dementia matters, Ethnic Concerns” – a film released in July 04 as part of the Care Needs of Ethnic Older Persons with Alzheimer’s project, run by the Policy Research Institute on Ageing and Ethnicity and their partners.


problem for BME communities is growing as the population ages, and that

much more needs to be done to bring the medical and social service

professionals together with voluntary groups and ethnic community

leaders.

Barriers identified by key informants

50. Many of the points identified above were reinforced in the comments

of key informants who were surveyed. This included identifying language

as probably the most important barrier, particularly for older people and

new arrivals; access to translation and interpreting, this potentially

presenting problems of confidentiality when family or friends were used to

interpret; and a continuing generally low level of knowledge about

neurological conditions and the availability of services within BME

communities (this is likely to be generally applicable irrespective of

ethnicity).

51. Other issues suggested were the confusion surrounding the difference

between mental health and neurological conditions; denial arising from

stigma, shame and concerns about family members marriage prospects

being damaged if it is an inherited condition and a reluctance therefore to

seek help; myths and superstitions; viewing neurological conditions as ‘an

act of God’ e.g. in the case of epilepsy; and racism and discrimination.

Access issues identified by Neurological Organisations

52. The voluntary sector neurological organisations surveyed46 identified

many of the same access issues for BME communities using their services

as noted above, as well as some additional ones:

Ataxia

46 In some cases organisations have not changed the comments made about access in the 2000 survey and where we did not receive a response to the 2004 survey we have inserted the entry from the interim study


53. Barriers mentioned were the difficulty of getting a diagnosis and lack

of interest of doctors, poor referral services, misdiagnosis and inadequate

resources. Language and advocacy workers were felt to play a significant

role for those who did not have English as a first language.

Alzheimer’s Disease

54. The organisation’s image was seen as a barrier. In addition, language

used on leaflets and lack of Black volunteers and staff. There were also

different cultural perceptions on dementia and different concepts e.g.

with carers. Low priority, lack of resources, lack of open debate and

previous bad experience were also mentioned.

Autonomic Failure (The Sarah Matheson Trust)

55. Language barriers and people not being aware of the service.

British Brain & Spine Foundation

56. Suspicion of the organisation and language related difficulties were the

main issues and a lack of confidence in the effectiveness or

appropriateness of treatments. Cultural differences were also identified,

language differences, and using existing community support structures.

British Epilepsy Association

57. The stigma attached to epilepsy in some cultures as people may be

considered to be either ‘possessed’ or ‘holy’. Language and culture, it was

felt, could also act as barriers.

Candid

58. Not being referred by GP’s and language difficulties

Cerebral Palsy (Scope)

59. People not knowing about the service.


Charcot Marie Tooth

60. Language difficulties and lack of knowledge about what services are

available. People were dealing with these problems within their own

families and communities without sufficient understanding about the

condition.

Dysphasia (Action for Dysphasic Adults)

61. General discrimination through lack of knowledge of other cultures and

backgrounds.

Dystonia

62. Language and cultural difficulties were identified.

Huntington’s Disease Association

63. The cultural implications of a hereditary disease was seen as the main

issue.

ME Association

64. A belief that BME members get help and support from within their own

community. Difficulties in obtaining a diagnosis and cultural differences

were also identified.

Migraine Action Association

65. Language difficulties were seen as an issue as were cultural issues–

migraine was often not viewed as needing medical attention and there

was a lack of awareness of available treatments.

Motor Neurone Disease Association

66. The image of the service as being white and middle class was an issue

as was the lack of culturally sensitive service provision, lack of knowledge

of services and the need to recruit people to the organisation from Black

and minority ethnic communities. A lack of appropriate services and

information in different languages were identified and information not

displayed in correct access points.


The 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.

Different Strokes

74. The usual barriers.

Tourette Syndrome

75. They had no direct experience but expect they do happen

76. A recognition of the difficulties and barriers that members of BME

communities can face in accessing appropriate care has recently lead to

the publication of a guide47 aimed at helping statutory and voluntary

sector organisations address this issue. This guide is a joint initiative

between the National Black and Asian Neurological Project Group and five

major neurological charities – the Parkinson’s Disease Society, the

Huntington’s Disease Association, the Multiple Sclerosis Society, the

Motor Neurone Disease Association and the Stroke Association.

Personal Experience

77. Comments of a small number of individuals from BME communities

with neurological conditions48 provide first-hand experience of some of

the above access issues. The interviewees had limited knowledge about

what services were available and the majority had not heard of the Glaxo

Centre. Several had experienced language difficulties, though

interpreters had been made available. The level of satisfaction with the

health services the group received varied from good to very

unsatisfactory, with one person feeling that they were not receiving the

47 op cit 44

48 Issues of confidentiality and willingness to be interviewed meant that it was only possible to interview eight individuals, with just two of these being in 2004. The interviewees came from the Liverpool Somali, Chinese, Indian, Pakistani, Yemeni and Black British communities. Five were male and three female.


medical care they were entitled to. Two of the people who were

unsatisfied felt that their ethnicity had been a factor in the medical

treatment they received or been offered.

78. This group’s experience and satisfaction with non-medical services

also varied and again, two people felt their ethnicity had detrimentally

influenced the services they received. The group identified a number of

access issues affecting them:

The need for various forms of non-medical advice and support

Welfare rights advice

Financial help

Transport and travel problems

Difficulties to do with accommodation

79. Most of the above issues may well apply to anyone who has a

neurological or any serious long-term medical condition and it is clearly

important to treat these comments with caution given the low numbers

interviewed. This does however suggest the need for a larger scale survey

of members of BME communities who have neurological conditions. One

of the questions this should try to address is the extent to which ethnicity

is perceived as a factor in determining access to services and how they

are experienced.

Positive Action

80. The ‘Towards Diversity’ report49 provides a practical response by five

of the main voluntary sector neurological charities to taking positive

action to address inequalities in access to services for BME members. It

stresses the importance of offering appropriate and culturally sensitive

services and the need for organisations to be diverse not only at delivery

level by employing staff from the communities they are working with, but

at all levels.

49 op cit 44


81. A recent Government consultation paper50 highlights ways that some

Health Authorities are attempting to overcome access barriers

experienced by BME communities. Though not specific to neurological

services they offer some useful ideas including regularly reviewing health

services with BME groups to ensure they are culturally, linguistically and

religiously appropriate. The value of setting targets to reduce health

inequalities, the need for effective ethnic monitoring in both primary and

secondary care and producing culturally appropriate health promotion

materials are all identified. The use of bilingual health workers is also

noted, which is an initiative that locally, the Central Liverpool Primary

Care Trust has taken by employing 13 bilingual health workers. It also has

a contract with Liverpool City Council to provide an interpreting and

translating service and carries out patient profiling in at least 15 GP

practices.

82. Various small initiatives have taken place round the country, for

example51 the Ilford Park Polish home have Polish speaking staff for their

residents who have dementia, as they state that often people lose their

English speaking skills as the disease progresses. In Holland, a care

centre for Surinamese immigrants with dementia incorporates familiar

food and traditional customs and this makes residents feel more secure

Positive action by neurological organisations

83. Along with identifying barriers to accessing their services, the

neurological organisations surveyed52 were asked about the positive

action they were taking to address these:

50 New Deal for Communities: race equality guidance’, October 2004, The office of the Deputy Prime Minister

51 “Dementia” –film produced by the Community Channel, 2004

52 Where we did not receive up-dated information from organisations we have included their entry from the 2000 survey, though in some cases this may be out of date


Alzheimer’s Disease Society

84. The organisation has employed outreach workers to develop

awareness and understanding of dementia in ethnic communities in

Sheffield, Leicester, Newcastle and Birmingham. One or two other

branches e.g. Portsmouth and Bristol have been extending services to

BME groups, though they do not have workers specifically employed to do

so. A joint research project by London region and Haringey Social Services

looking at the needs of minority ethnic people with dementia has been

undertaken. Information is translated into Gujerati, Hindi, Punjabi, Urdu,

Cantonese, Polish, and Welsh. The following suggestions were put forward

as a basis for an action plan in 2000:

Organisational image – develop and extend house style to include

guidance on development of materials.

Phones – minicom, sub to language line

Leaflets – translation

Posters / language – posters / leaflets in minority ethnic community

languages and in community press

Representation in literature – house style

Previous bad experience – specific contact with referral agencies to

overcome this

Lack of outreach – advertise for specific outreach volunteer, write a job

description for someone to develop links

Different responses and expectations – training on trans-cultural

counselling

Different concepts e.g. carers – leaflet e.g. who are carers with pen

portraits, and appropriate representative illustrations

Low priority – remit to a specific worker

Cultural perceptions of dementia – research

85. The society also set up a Black and Minority Ethnic Communities

Project to increase their understanding and to share their knowledge of

dementia by working with people from BME communities. This was a pilot

project designed to raise awareness of dementia amongst BME

communities across London and to promote the provision of culturally


appropriate social care services. They obtained a 3 year grant from the

Department of Health and the City Parochial Foundation to work in

partnership with 4 community groups: The Friends of African/Caribbean

Carers and Sufferers of Dementia, Chinese Community Centre, AMARDEEP

(a mental health project for people of South Asian descent) and Barnet

African Caribbean Association. The project lasted from November 2000 to

March 2003.They have also produced a publication called “Toolkit for

Working with Cultural Diversity”.

86. Their findings and recommendations included the following which were

in addition to their suggestions in 2000:

Raising awareness:

Videos were a big success but need to be translated into other

languages

Events and conferences also a success but need to be on going

Other literature-leaflets in 16 languages and information packs

Developing partnerships

Partners welcomed this opportunity-4 were identified

Appropriate training was key to success

Provision of the grant was often not enough for the partners-they also

needed practical help

Needs to be flexible and easily accessible format

Participants benefit from extra follow up

Cultural awareness training needed for members and staff of the

Society

BME trainers to be part of the team

Work with Alzheimer’s Society branches and national organisation

The project helped strengthen the existing links between the Society

and BME communities in London and many branches are now more pro

active in reaching out

Enquiries from BME communities have increased


Branches nationally are more aware of working more actively with

people from BME communities

Autism (The International Autistic Research Organisation)

87. Interpretation available in some languages

Autonomic Failure (The Sarah Matheson Trust)

88. Use of hospital interpreting services

British Brain and Spine Foundation

89. A part time officer had been appointed to improve access to services

from Black and minority ethnic communities. Some of the organisation’s

booklets have been partly translated into Cantonese and Italian and they

are a member of Language Line.

British Epilepsy Association

90. In 2000 the association had plans to produce information in other

languages, primarily Asian languages.

Cerebral Palsy (SCOPE)

91. Information available in Arabic, Bengali (Sylhetti), Cantonese, Gujerati,

Hindi, Punjabi (Gurmakhi and Mirpuri), Somali, Spanish, Turkish, Urdu, and

Welsh, including audiotapes. Scope also subscribes to Language Line; a

telephone based interpreting and translation service. This provides access

to interpreters 24 hours a day in 100 languages.

Dementia (CANDID)

92. Interpreters in different languages.

Dysphasia (Action for Dysphasic Adults)

93. In 2000 the organisation was looking at the design of material suitable

for Asian languages, though not currently being developed.


Huntington’s Disease Association94. One of the five national organisations contributing to the publication

‘Towards Diversity’53

MNDA

95. Information provided in Punjabi and Urdu. National outreach project in

partnership with

Parkinson’s Disease Association, Language Line and leaflets.

Migraine Action Association

96. Information produced in Bengali, Hindi, Gujerati, Punjabi, and Urdu.

MS (The Multiple Sclerosis Society)

97. One of the five national organisations contributing to the publication

‘Towards Diversity.’54National support group aimed at raising awareness

in Asian communities. Also the Shane Project (for the African-Caribbean

community). Information provided in Urdu, Punjabi, Welsh, Bengali,

Gujarati and Hindi. Also Hindi on audiocassette.

Myasthenia Gravis Association

98. An evaluation55 of the involvement of BME community members in the

association was undertaken this year, with a number of specific

recommendations made. The association is looking for funding for an

outreach worker and to translate its information into other languages. In

addition, the association is intending to provide training for its staff, local

branches and volunteers in race and equality issues.

National Meningitis Trust

99. In 2000 the Trust intended to have basic materials translated into

selected minority ethnic languages.

53 op cit 44 54 op cit 4455 op cit 27


Parkinson’s Disease Society

100. Recently published the ‘Towards Diversity report.’56 The guide was

developed following an event held for neurological organisations in 2003.

It is part of a joint approach between a group of neurological

organisations that began in Birmingham 10 years previously. The National

Black and Asian Neurological Project Group aims to:

Share knowledge, ideas and good practice across organisations to

improve the support that Black and Asian people with neurological

conditions receive both locally and nationally

Explore and develop the potential for partnership opportunities, sharing

resources as appropriate

Develop joint working on projects that offer practical solutions to help

staff meet organisational as well as local objectives

Work together to influence and shape policy and practice which affects

people from Black and Asian groups with neurological conditions

Promote and influence, within their own organisation, work with people

from Black and Asian groups

The guide contains a range of ideas from helping to improve staff’s

understanding about the needs of diverse communities and producing

resources to partnership working (with health and social services, community

groups, places of worship, other neurological organisations etc.) It gives the

social, business and legal case for reaching out to diverse communities. It

gives examples of projects around the country that have been successful

plus a list of useful contacts.

The Society also has an outreach service for Black and minority ethnic

communities based in Birmingham. In London it has a pilot project, to be

focused on 2 areas: partnership work with the PCT/Social Services, and Peer

Education. In Halifax, a partnership project with BME health link workers.

Community support worker monitors contact made with Black and Asian

people. New services to include ethnic monitoring. Information translated

into Punjabi, Urdu, Bengali, Gujerati, Cantonese, Welsh and Hindi.

56 op cit 44


Association for Spina Bifida & Hydrocephalus

101. Information sheets available in Urdu, Punjabi, Hindi and Bengali.

Advisers with local minority ethnic community groups in their area. Has

taken part in initiative to improve access to information for BME

communities in the West Midlands.

The Stroke Association

102. One of the five national organisations contributing to the publication

‘Towards Diversity.’57 Carrying out research into different levels of

incidence within different ethnic communities and produces fact sheets

for high-risk communities. Pamphlets available in Punjabi, Hindi, Urdu,

Bengali, Gujerati, and Welsh and selected leaflets on audiotape.

Syringomyelia (ANTS)

103. Translation can be provided on request.

57 op cit 44


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

107. This evaluation is based on review of background papers and reports

including funding applications58, interviews with key informants including

health link workers, the outreach worker and his line manager, the Glaxo

Centre manager, observation of neurological forum meetings, and a

survey of community and voluntary sector organisations working with

BME communities on Merseyside.

108. At the outset it is relevant to note the scope of the duties of the

outreach worker and to place these in the context of the access barriers

identified elsewhere in this report. This context makes it understandable

as to why these duties are so wide, but it is difficult to see how they could

be achieved by any one worker over the limited period that the post has

been funded. This has inevitably led to some prioritising of these duties.

The outreach worker

109. In practice the outreach worker has seen providing support to

individuals and building up a variety of contacts within BME communities

as the main focus of his work. In addition, other duties have included

networking with, and educating voluntary and statutory services and

providing interpreters and culturally sensitive support when needed.

Breaking down the barriers that prevent people accessing employment,

training and social opportunities and recruiting volunteers from BME

communities to work in the Glaxo Centre have also been a feature of the

work.

110. Limited resources have constrained his ability to work with local

communities and agencies in helping them build their capacity to support

people within their communities who have neurological conditions.

58 This evaluation does not comment directly on the monitoring, or output data that has been required by the National Lottery.


Providing on-going support to volunteers has also proved difficult due to

pressure of other duties, as has been extending the service beyond

Liverpool. Additionally, there has often been a lack of interest from

employers in respect of disability and ethnicity. He had also had to focus

on networking with BME organisations rather than disability groups.

111. In assessing the effectiveness of outreach work with BME communities,

the different methods he has employed had been of limited success.

These methods had included:

Working together with other organisations, holding health promotion

days in the local communities, promoting the services that the Glaxo

Centre offers

Personal contact with Black and minority ethnic communities, visiting

them, explaining about the Glaxo Centre, his role as outreach worker

and providing written information

Developing a BME neurological forum aimed at disseminating

information to BME communities, and working with statutory and

voluntary agencies so that a long-term solution to BME communities

accessing neurological support services could be secured.

112. The difficulties experienced centre partly on the low incidence of

neurological illnesses (with the exception of stroke) in the general

population and therefore the very low actual numbers within any BME

community.59 This and the fact that for some communities particular

neurological conditions may be hidden away, coupled with issues of

confidentiality limiting health professionals’ ability to provide contact

details of patients, have contributed to the overall difficulty of engaging

people. In addition, the priority given by organisations and key workers to

59 Even for some of the most common neurological conditions prevalence rates are very low: for Parkinson’s Disease the rate is 200 per 100,000, for Multiple Sclerosis 114 per 100,000, for Motor Neurone Disease 7 per 100,000 and for Huntington’s disease approximately 13.5 per 100,000 (from Neuro Numbers op cit 31) Any calculation of actual numbers of members of a particular ethnic minority group in a particular area, for any one condition is likely to produce extremely low figures.


neurological conditions has almost certainly been influenced by all the

other information, events and forums aimed at BME communities.

113. One of the main strengths of the post has been the very visible

presence of the outreach worker in the BME communities and thus also of

people’s knowledge of the Glaxo Centre and what it provides. However,

although BME communities are now aware of the Glaxo Centre and more

people are using it, without an on-going presence of some kind, the

extent of their knowledge and therefore access is always likely to be

limited. Lack of resources had not allowed a local presence, although

recently office space within the Granby area had been secured for

outreach work one day a week.

114. The partnerships that have been developed with BME groups and

organisations have been very fruitful, as have been those developed with

statutory agencies, although the benefits of the latter would only be

visible in the longer-term. However, getting the balance right of working

both at a strategic level as well as helping clients has created a tension

that isn’t easily resolved.

Key informants

115. Both the manager of the Working Life Project and the Centre Manager

identified several strengths to the post including the visible presence of

the outreach worker and hence of the Glaxo Centre in the BME

communities and the bridges that have been built. This has resulted in

the Glaxo Centre becoming more accessible to people in BME

communities. A two-way flow had been developed with more people

coming to the centre and not just the Glaxo Centre going out to meet

them in their own communities, as had always happened previously. This

had resulted in more staff, more volunteers and one committee member

from the BME communities.

116. As well as dedicated outreach work with BME communities, the Glaxo

Centre has also been able to contribute to community events as a result

of the lottery funding. An example of this was the joint event with


Refugee Action which proved very successful and enabled relationships to

be developed with a number of BME organisations.

117. Race and cultural awareness training for Glaxo staff had been carried

out, as has training for staff in the Walton Centre, creating more

understanding of issues with regard to BME communities. There was also

recognition by national neurological organisations of the good practice at

the Glaxo Centre.

118. The numbers of people using the Glaxo Centre from the BME

communities has however, not been as high as had been hoped; the

exact numbers have not been fully recorded60 for the outreach project

reflecting both sensitivities and practical difficulties in ethnic monitoring

its work. Funding has been available to carry out more events and road

shows with BME communities, but few people have attended these. This

may be due to stigma associated with neurological conditions and might

be overcome if these activities also involved wider health issues. As the

post is time limited this created constraints in forward planning.

119. The role and development of the BME neurological forum was

discussed with members of the Merseyside Multicultural Diabetes Forum.

This has a similar brief to that intended for the neurological form and had

recently undertaken research in to the uptake of diabetic services by BME

communities that had relevance for neurological services. There are a

number of health initiatives aimed at local BME communities, which made

demands in terms of attending meetings, forums, events and other

activities. Often the responsibility for liasing and working with these

initiatives fell on the same relatively few individuals. There were also

instances of overlap and duplication.

120. This discussion strongly suggested the value of a collaborative

approach to the development of a BME health forum that would have a

wider brief than neurological conditions. It also helped to explain the 60 106 people have used the outreach service and neurological information widely distributed amongst BME communities, though not all contacts have been recorded


difficulties that had been experienced in the development of the

neurological forum and getting a consistent attendance and willingness

for people to take on any work arising from its meetings.

Survey findings

121. The survey of community and voluntary sector organisations and

statutory agencies61 was intended to help assess the impact of the

outreach project. It found that the majority had heard of the outreach

project; a few knew a great deal about it with only a small number

knowing nothing at all. Two-thirds of community organisations had had

contact or involvement with the project and two thirds had received visits

from the project worker and attended meetings and talks it had organised

and almost all had received information about the project. A small

number had phoned for advice or information or had received help for

people with a neurological condition, though only two had taken part in

the multicultural neurological forum.

122. Almost a third of the agencies surveyed had received visits from the

project worker and the same number had received information about the

project and had attended meetings/talks organised by it. A few had

phoned for advice or information, or had received help for a person with a

neurological condition. About half had found the contact with the project

very useful and just under a half quite useful. The reasons given for these

responses were very positive and included such statements as:

‘The outreach worker is friendly, approachable, knowledgeable in

terms of networking and resourceful’, ‘He has been very supportive

and encouraging’, ‘We have always had positive and very informative

information from the project’.

123. Other comments centred on the help received in recording a video for

the Asian communities, a football tournament organised by the outreach

worker, the speed with which he provided help, and the value of his being

61 A total of 31 questionnaires were returned out of 78; 18 of these were from community organisations and Health Link Workers and 13 from agencies. The response rate was lower than expected, possibly due to the survey being conducted during the holiday season and it may also have been affected by the number of other local surveys in circulation at that time. The Health link workers were also interviewed at the time of the survey


able to access interpreters. A small number said that contact had been

limited due to the few people they had come across with neurological

illnesses.

124. Agencies and Health link workers were asked if the involvement with

the outreach worker had brought about any changes in how their

organisation/service works. Mainly they said that it had increased their

awareness about the conditions affecting BME communities as well as the

project itself and were probably more effective because of the advice

given by the outreach worker, and would therefore be happy to refer

anyone. They were also asked if they were aware of any impact the

involvement with the project had had on patients/clients. In reply to this,

two said it had been a great support to clients, while others said that

people now knew there was help available.

125. A number of suggestions were made about improving the effectiveness

of the project including regular contact with community organisations,

keeping groups informed and the use of different venues for meetings so

as to reach out to more communities. Two people felt the project should

be more proactive and one that it should have a local base. The value and

high standard of the work was restated and reference made to the very

significant impact the project has had on the Somali community.

126. Almost all thought it was very important to have an outreach project

that tries to raise awareness about neurological conditions with BME

communities and most that it was very important to try and raise the

awareness of health workers regarding the barriers and difficulties people

from the BME communities may face. Many felt there was a need for

training around cultural and religious needs as often the ignorance of

Health workers acted as a barrier for people accessing services.

Assessment

127. The outreach project has had to overcome a number of difficulties in

trying to achieve its objectives. In part these relate to the relatively low


incidence of neurological conditions and the small numbers of people

from local BME communities who are directly affected; it has also had to

overcome the lower priority given to this aspect of health by hard-pressed

community sector workers and activists in the midst of a range of

competing demands. This in particular has impacted on the worker’s

efforts to develop the BME neurological network.

128. Reference has already been made to a number of barriers that inhibit

the use of neurological services by BME communities, some of which

create further difficulties in undertaking outreach work e.g. denial that a

family member is affected by a condition. The historic disadvantage and

discrimination faced by BME communities locally adds another dimension

in understanding the complexity and difficulties of engaging individuals

from these communities and the groups that represent or work with them.

129. Not withstanding the above it seems clear that this project has in

general been viewed as a positive initiative and a valuable resource,

which has been enhanced by the personal commitment of the worker. It

has been important for him to remain focused and motivated in a

situation that places a range of demands and responsibilities on him and

yet, at the same time has the potential for making him feel isolated. Not

least of the demands on him are the pressures of working with individuals

with neurological conditions. It is unfortunate that we have not been able

to undertake an assessment of the impact of this work with individuals,

with only two people agreeing to be interviewed.

Future Direction

130. There is recognition within the Glaxo Centre that the outreach project

may need to change to develop a more integrated approach with other

agencies in meeting the health needs of BME communities. One

suggestion is that the post could have a wider health brief, with a variety

of health related agencies working together to fund it. This could be

linked to locating the worker within the BME communities to provide an

on-going and visible presence. It is envisaged that an initiative along

these lines could help overcome the stigma that can be associated with


neurological conditions in some BME communities, by making it just one

of a number of health issues that advice and support was provided on.

This would also mean that the worker had an increased number of

individual clients to work with.

131. The apparent difficulty with this proposal is the extent to which it

dilutes the focus on neurological conditions, which might be even more

emphasised if the worker was not based in the Glaxo Centre.

132. Another proposal envisages a team of volunteer ‘outreach’ workers

being recruited from local BME organisations thorough the appointment of

a volunteer coordinator and a development worker. A consortium of

voluntary sector health and care organisations that were concerned to

improve their contact with BME communities would also be developed

and they would provide volunteering opportunities. The volunteers would

not only undertake volunteering within these organisations, but would

also act as a link to their community own organisation and the

consortium.

133. One outcome of this initiative is seen as being improved capacity by

consortium members to work with BME communities and improvements in

access to their services. The key role that the Glaxo Centre would play in

this initiative would ensure its continued links with BME communities and

the neurological support it provides. It is also envisaged that this initiative

would increase the numbers of BME members gaining employment, or

volunteering experience, while training provided to all the organisations

taking part would improve cultural awareness and knowledge of

neurological and other health conditions.

134. This proposal would be dependant on the ability to recruit and sustain

a group of ten volunteers over a 12 month period, which may be more

challenging than it might initially appear, particularly depending on the

actual amount of time they would be asked to commit. If this challenge

can be met this would be an innovative project of value that addresses


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.


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.

141. The Glaxo Centre outreach project has been a positive attempt to

address some of the issues identified above in respect of improving

access for BME communities to neurological conditions. The project has

had to overcome a number of difficulties, but has still managed to make

an impact and is generally viewed as a valuable resource. It is hoped that

this report may help in identifying the future direction of this initiative.

Recommendations

142. In the main the recommendations that were identified in the interim

report have either been achieved or are ‘on-going’. This includes having

produced information about the services the Centre provides in the

languages of the main minority ethnic groups on Merseyside, while a DVD

is also shortly to be launched.

143. The following recommendations are made in respect of the Glaxo

Neurological Centre, though they have relevance for other organisations

working with people with neurological conditions.

144. To secure funding for the Outreach Worker’s post and to reconsider

the remit of this post.

145. To explore with Health and Social Services how information about

neurological conditions and ethnicity can be made available to their staff

and how they can provide translated materials for their clients / patients.

This remains a recommendation that was identified in the interim report

as it has not been a high enough priority within Health and Social Services


146. To examine the most practicable arrangements for ensuring the Centre

has on-going access to interpreting services, (at present it has a limited

budget).

147. To further develop and strengthen relationships with organisations and

groups representing Black and minority ethnic groups across the rest of

Merseyside and to work with them to further explore the most effective

ways of promoting its services to these communities and to the dispersed

asylum seeker population. MAAN, the Somali Mental Health Project would

be one example, as in this community stigma is attached both to mental

illness and neurological illnesses, as are neurological problems among

some BME communities. Also to continue to develop partnerships with

other neurological organisations and statutory bodies. Time constraints

have to date meant that the focus of the work has been only in Liverpool

148. To organise information and basic training for appropriate staff and

volunteers working with Black and minority ethnic groups; still on-going

149. To organise cultural awareness training for staff and members of each

national neurological organisation

150. To organise information and basic training for health link workers

including the use of jargon and terminology

151. To explore with the Central Liverpool Primary Care Trust collaborative

working, involving the health-link workers in an action-research initiative,

to identify and raise awareness about neurological conditions and

services in Black and minority ethnic communities. This should form part

of a larger epidemiological / ethnicity study, which would include issues to

do with practice such as referral systems

152. To discuss with North Mersey Community (NHS) Trust, Central

Liverpool Primary Care Trust and the Walton Centre general improvement

of neurological services to people from Black and minority ethnic

communities; on-going


153. To discuss the findings of this report with Primary Care Trusts and

Social Services in order to develop a joint action plan. This should include

measures to effectively address ethnic monitoring and racial and cultural

awareness training for care and support workers and health staff.

154. To collate feedback on the proposal for recruitment of volunteers as

put forward in this report

155. To make this study available to the neurological groups that the Centre

works with and with national neurological organisations

156. To carry out a national study to consider access to neurological

services both in the statutory and voluntary sector, by members of BME

communities who have, or are caring for someone with a neurological

condition. To subsequently develop a ‘tool kit’ aimed to improve access to

NHS and voluntary sector organisations.


Appendix One: Glaxo Neurological Centre

What is the Glaxo Neurological Centre?

Opened in Liverpool in 1993, the Centre is a unique non-medical centre

offering advice, information and support to people with neurological

conditions and their families. It also aims to raise the awareness of

neurological conditions in the community at large, and produces a monthly

newsletter.

Who runs the Centre?

The Centre is run by a registered charity, The Mersey Neurological Trust. The

work of the Centre is carried out by the staff group and trained volunteers

who have direct experience of, or a particular interest in neurological

illnesses.

How is the Centre funded?

The Centre is run by an independent charitable trust, the Mersey

Neurological Trust. Glaxo Holdings plc donated £l m which enabled the

Centre to be built, hence the name Glaxo Centre. Liverpool City Challenge

donated £250,000 to assist the project and the Mersey Regional Health

Authority provided an initial grant of £65,000 pa for three years to help with

running costs. The Trust currently generates funds for the continuation of the

Centre.

What facilities are available at the Centre?

The Centre is designed to be fully accessible to disabled people.

A reference library, database and internet facilities are available to the

public.

'Drop-In' advice and information service

Coffee and Snack Bar

Conference facilities and exhibition space

Accommodation for various neurological charities

Are there other services available at the Centre?

Start-up assistance and advice for new support groups

Outreach service for Black and minority ethnic communities

Access to neurological charities and their workers


Welfare Rights/Legal Advice sessions and advice on employment issues

Regular exhibitions and awareness raising events


The Working Life Project

The Working Life Project was launched by the Mersey Neurological Trust in

the Glaxo Centre in 1995 with a grant from the National Lotteries Charities

Board. It aims to help people who are in work or looking for a job, and have

been diagnosed with neurological disorder.

It offers an individually tailored programme of support, which could include

Individual counselling

Help to stay in employment or find alternative work

Advice about training

Access to benefit advice

A chance to talk to the specialist organisations who know about the

different neurological conditions

Help to sort out problems with daily living

Contact: Brian Simpson on 298 3282. [email protected]

The ethnic categories used in the Working Life Project are

White British

Any other white background

White and Black African

Black or Black British

Black African

Asian or Asian British

Bangladeshi

Other Asian background

Other racial group

White Irish

White and Black Caribbean

White and Asian

Black Caribbean

Any other Black background

Indian

Pakistani

Chinese

Prefer not to say / Don’t know

Main roles of the BME outreach worker


mailto:[email protected]

To work with individual clients to assist them to develop their potential

To network with Black and minority ethnic organisations and disability

groups across Merseyside

To network with Health, Social Services, Voluntary, Training and

Employment Groups and other statutory services

To establish ‘outreach’ centres for the Project initially in Liverpool and

expanding to Merseyside and beyond

To work with local communities and agencies to resource them and

build their capacity to support people within their communities who

have neurological conditions

To facilitate a culturally and linguistically appropriate advocacy

service

To provide an Education and Information Service to local employers re

disability and race

To help to break down barriers preventing people accessing

mainstream employment, training and social opportunities

To recruit and train volunteers from the relevant communities

To participate in project evaluation

To keep accurate records and reports

To follow the policies of the Glaxo Neurological Centre regarding anti-

discriminatory practices, health and safety etc

To work within the remit laid down by the project funders


Appendix two: Voluntary Sector Neurological

Organisations Surveyed

NB: * denotes organisations that responded to the 2004 survey

Ataxia UK*

Alzheimer’s Society*

ANTS (Ann's Neurological Trust

Society)

BASIC - (Brain & Spinal Injury

Charity) *

British Brain & Spine Foundation*

CANDID -(Counselling & diagnosis

in dementia)*

Charcot-Marie-Tooth (CMT)*

The Dystonia Society*

Huntington’s disease association*

Myalgic Encephalomyelitis (ME)

Association

Migraine action association*

Motor Neurone Disease

Association*

Meningitis Trust

The Multiple Sclerosis Society*

Muscular Dystrophy Campaign

Myasthenia Gravis Association*

Neurofibromatosis Association

Neuropathy Trust

Parkinson’s Disease Society*

Autonomic Disorders Association

Sarah Matheson Trust

SCOPE

ASBAH - (Assoc. for Spina Bifida &

Hydrocephalus)

The Stroke Association*

Different strokes

Tourette Syndrome (UK)

Association*

Appendix three: Local organisations surveyed

Advocacy Project

Age Concern

Amadudu

BEST Team

Black Health Network

British Red Cross - Merseyside

Branch

Brotherhood Of The Cross And Star

Canning Area Action Group

Friends Information Centre

Granby Toxteth Review

Irish Community Care Merseyside

Liverpool Alcohol Service CIC

Liverpool Black Sisters

Liverpool Family Service Unit

Liverpool Housing Action Trust

Liverpool Somali Community

Liverpool Yemeni/Arabic Club

Local Solutions Shopmobility

Lodge Lane And District Credit Union

Marie Curie Centre

Mary Seacole House

Merseyside Bangladesh Organisation

Merseyside Brook Centre

Merseyside Drugs Council

Merseyside Hazards And

Environment Centre

Merseyside Society For Deaf People

Merseyside Somali Community

Association

Merseyside Yoruba Community

Centre

Moving Image Workshops

Pagoda Chinese Community Centre

Personal Services Society

Rialto Neighbourhood Council

Royal National Institute For The

Blind

Sahir House

Sheila Kay Fund

Somali Women’s Group

South Liverpool Personnel

The Adolescent & Children’s Trust

(TACT)

The Global Vision Institutions

The Nugent Care Society

The Patients' Council

The People's Centre

Toxteth Metro – Tigers

WHISC

Windsor Street PSP

Yemeni Community Association

Young Persons Advisory Service

Joint Forum

Elimu Academy

Heal 8

Hindu Cultural Organisation

Sudanese Women's Group

Merseyside Somali Community

Organisation

Jamaica Merseyside Association


West African Elders

Liverpool Muslim Society

Pakistani Association

Sikh Community Centre

Chinese Recipes For People With

Diabetes

Merseyside Bangladesh Association

HAWA

Chinese Diabetes Education And

Support Group

Merseyside Diabetes Support Group

Appendix Four

Neurological Condition Brief Summary

Ataxia

Ataxia is perhaps one of the most unique problems appearing after damage to the

cerebellum or pathways vital to the cerebellum. It refers to the symptoms of poor

balance and co-ordination present in various neurological disorders.

Ataxia may affect the ability to walk, use the hands or speak clearly, but does not

affect intelligence or mental processes. The symptoms and the severity of all types

of ataxia can vary from person to person - even within the same family.

Friedreich's ataxia is the most common form of hereditary ataxia. It is characterised

by progressive limb and gait ataxia before the age of 25 years, patients may

develop heart and muscle disease. The metabolic basis of Friedreich’s ataxia

remains unknown.

Brain Injury:

Our brains are very complex, controlling all aspects of our functioning from our

thought process, memory, movement and sensation to our behaviour and

personality. If the head sustains a blow the brain can be bruised, shaken or

lacerated. This is known as a traumatic brain injury or, more simply, a head injury.

Different parts of the brain control different functions and so the consequences of

the head injury vary according to the part of the brain involved and the severity of

the injury. Head injury affects no two people in quite the same way and each has a

unique physical, intellectual, emotional or rehabilitation problems.

Rehabilitation is necessary after brain injury to help people to rebuild their lives.

This usually involves the family and a team of health professionals, which may

include physiotherapists, occupational therapists, speech pathologist, psychologist,

neuropsychologist, social worker, dietician, vocational counsellor and rehabilitation


medical specialist.

Alzheimer’s Disease:

Alzheimer's Disease is the most common form of dementia. It is characterised by

the slow progressive deterioration in intellectual and adaptive functioning including

thought, memory and language, and ability to carry out daily activities. The age of

onset ranges from the fifth to eighth or ninth decades and women are slightly more

susceptible to the disease than men. A family history of dementia increases the risk

of developing the dementia to between 25% and 50%. A variety of other causes and

risk factors have been suggested; increasing age seems to be a major risk factor,

significant head injury and exposure to toxic substances such as metals and organic

solvents has also been postulated as increasing the risk. Scientists are also finding

increasing evidence that some of the risk factors for heart disease and stroke such

as high blood pressure, high cholesterol and low levels of the vitamin folate may

predispose people to Alzheimer’s.

The cause of the disease is unknown and as yet there is no cure for Alzheimer's

Disease but new drug treatment has been found to slow the progression of the

condition if administered in the early stages.

Cerebral Palsy:

Cerebral Palsy is not a disease or an illness, it is a general term, which refers to a

group of conditions that affect the Central Nervous System and involve motor

disorders, (i.e. physical impairments that affects movement from barely noticeable

to extremely severe). There are several different types of Cerebral Palsy with

differing characteristics that correspond to injuries to different parts of the brain.

The three main types are Spastic CP, Athetoid CP and Ataxia CP.

Cerebral Palsy may be due to events occurring before birth, during birth or in

infancy. Causes may induce infection during pregnancy, exposure to radiation or

toxins, malformations of the brain, premature delivery, diminished oxygen to the

baby during birth, accident, trauma and illness in infancy. It is not a progressive

disorder and therefore the person's level of disability does not significantly worsen

or improve throughout life. It affects between 0.1 % and 0.2% of children and males

and females are affected with equal frequency.

There is no cure for Cerebral Palsy at this time; drug and surgical treatments are

aimed at controlling symptoms and to overcome difficulties in everyday living.


Charcot-Marie-Tooth Disease:

Charcot-Marie-Tooth Disease is a hereditary disorder that involves a very slow

progressive muscle 'weakness in the feet, lower legs and hands.

There are two types of Charcot-Marie-Tooth Disease, namely Neuronal and

Hypertrophic, both types affect about equal numbers of males and females, and it is

estimated that 50 in every 100,000 are affected by the disease. In most cases,

Charcot-Marie-Tooth Disease is an inherited disorder, which has an autosomal

dominant pattern of inheritance. This means that it is only necessary for one parent

to have the gene for it to be transmitted to their offspring. Each child of an affected

parent has a 50% chance of inheriting the disorder.

There is no cure for Charcot-Marie-Tooth Disease at this time; management of the

symptoms is the primary aim of treatment, with orthopaedic surgery considered if

foot deformities develop.

Chronic Fatigue Syndrome - (Myalgic Encephalomyelitis - M.E.):

Chronic Fatigue Syndrome (CFS) is a chronic, debilitating disorder, which may begin

following a viral infection. Once the original infection is over its effects persist in the

muscles and brain although the exact pathology of the disorder remains uncertain.

The course of the disorder is extremely variable, with some people recovering to

live normal lives while many become confined to the home or to bed. Most people

recover after six months, while others suffer relapses over months or years.

Relapses may follow too much physical activity, emotional stress or climatic

changes, and may be worse than the original symptoms.

The causes of CFS are not known, it has been suggested that the disorder is

associated with persistent viral infection and a defect in the immune system.

Another hypothesis involves a magnesium deficiency.

CFS is a relatively common disorder affecting about one in 2000 people.

There is no cure for CFS at this time; Vitamin supplements, sensible nutrition,

analgesics, rest and recreation are the only available treatments.

Dystonia:

Dystonia is the term used to describe particular types of involuntary and abnormal

movements and posture that are seen in a variety of neurological disorders.


Dystonia can affect just one part of the body, or several different areas. Usually,

other functions of the brain are not affected. For example, a person’s intellect,

personality, memory, emotions, sight, hearing and sexual function are generally

normal.

There are several types of Dystonia which affect both men and woman of all ages. It

can develop in childhood, and is often particularly disabling for children. Dystonia

that manifests itself in adult life tends to remain focal, rather than becoming

generalised.

The causes of Dystonia are not yet fully understood, but it is thought that in some

cases it may be caused by a chemical imbalance in a particular area of the brain

that is responsible for controlling movement. This part of the brain is damaged in

some way causing the wrong muscles to contract when we try to move or the

muscles contract unnecessarily even when 'we are at rest, causing uncontrollable

twitching, tremors and contractions. It is also thought that it could be a malfunction

of the Central Nervous System, probably in the basal ganglia.

The symptoms of Dystonia can often be painful and may vary in their severity from

a minor inconvenience to a total interruption of normal life. Dystonia is an

uncommon condition affecting approximately 391 people per million of population.

There is no cure for Dystonia at this time, however there is adequate drug therapy

available for controlling symptoms. About one in 20 people with Dystonia has a

spontaneous remission, which are most likely to occur in the first five years of the

illness and subsequent relapses are common

Epilepsy:

Epilepsy is the tendency to have repeated seizures, which usually recur

spontaneously. The brain receives and sends messages for tasks such as movement

to take place. If there is a mistake sending or receiving messages, a brief break in

some or all of the brain’s tasks can happen. If this happens, a person may have a

seizure.

For most people there is no known cause for their epilepsy – idiopathic epilepsy.

Sometimes it can be a result of brain injury, birth trauma or stroke -symptomatic

epilepsy. Sometimes it is suspected that there is a physical reason that has yet to

be found –cryptogenic epilepsy. Diagnosis is based on events and there is no

medical test that can prove that someone has epilepsy. Tests such as an EEG can


pick up on abnormal activity in the brain but is not grounds enough for a diagnosis.

Once diagnosis has been confirmed, the person will be offered anti-epileptic

medication. One in every 200 children and adults has epilepsy, and it occurs in all

ages, races and social classes.

Huntington's Disease:

Huntington's Disease is characterised by abnormal involuntary movements,

emotional disturbance and intellectual deterioration. Average age at onset is about

40 years for the most common form of the disorder; however some cases were

reported as late as 70 years.

The disease is an inherited condition and there is no cure for it at the present. The

physiotherapist can play an important role in the maintenance of movement and

motor control as 'well as the prevention of complications arising from immobility in

the later stages. Speech therapy may also be involved with maintaining

communication skills. In the UK, Huntington's Disease has been studied more

intensively than in any other part of the world; no obvious pattern emerges to

suggest a single focus of the disease.

Migraine:

Migraine is a neurological condition that may have a number of causes, all of which

result in the abnormal flow of blood to certain areas of the brain. Migraine

headaches can be induced by factors such as stress, diet, hormonal changes or

even the weather. It tends to be more prevalent in families, but the' pattern of

inheritance is not fully understood.

Knowledge of one's own premonitory symptoms can help in preventing or aborting

attacks; and also to maximise drug efficacy. There is no standard drug treatment in

Migraine so the choice of drugs is always made on an individual basis. The most

widely used medications are still the analgesics such as aspirin, paracetamol which

can be bought over-the-counter. Prescriptions can also be made by the doctor for

anti-emetic drugs, which can be taken before the analgesic to improve its speed of

action and reduce nausea.

Huge progress has been made in the last decade for the discovery of the gene

responsible for one in the spectrum of migraines. The GP is the best person to help

sufferers to manage their Migraine, however there are Local Migraine Trust

branches and other organisations whose mission is to help and support sufferer in

every way they can.


Multiple Sclerosis:

MS is a medical condition of the central nervous system and since any part of the

system can be affected, it can create widely differing symptoms. It is impossible to

predict to what extent it will affect someone. Some people have a mild form of MS

and never experience any symptoms which prevent them from working. Others

have to cope with varying degrees of disability, which temporarily affect their ability

to do a range of activities. A few people become disabled quickly. The range of

possible symptoms can include problems with vision or sensation, co-ordination or

mobility. Fatigue is common, and symptoms can be made worse by stress.

Muscular Dystrophy:

Any one can get Muscular Dystrophy (MD). The disease is not catching and usually

inherited from a parent or parents through their genes, but sometimes a few cases

have been sporadic. The main features of the disease include; muscle 'weakness,

disturbances in posture and gait, and muscle cramps. The diagnosis is usually

confirmed by the results of a blood test, an electromyography test and a muscle

biopsy. About one in every 2,000 people in the UK may have Muscular Dystrophy,

but the effects are much wider than that; relatives may be carrying the faulty genes

while not showing any symptoms.

There are around 60 different conditions that come under the umbrella of the MD

Campaign. These involve muscles and motor nerves. The charity's information

service can provide details of these. As yet there are no specific cures for any of the

MD. However, there are effective treatments for maintaining independence and

mobility.

The Muscular Dystrophy Campaign provides practical help for individuals and

families with neuromuscular disorders through its network of Family Care Offices, its

hospital-based muscle centres, its expert advice on equipment and adaptation and

its support information service. The charity can also provide grants toward essential

equipment like outdoor electric wheelchairs and special beds.

Parkinson’s Disease:

Parkinsonism refers to a collective group of conditions. Parkinson's Disease (PD) is

the most common form of the condition. It occurs when nerve cells do not work

properly in a particular area of the brain. These nerve cells produce and store

dopamine, the chemical messengers which co-ordinates the body's movements.

The most common age of onset is between 50 and 70 years although younger


people can be affected; the cause of the disease is unknown.

Main features of PD are; resting tremor, rigidity i.e. resistance in joints and muscles

when they are passively moved or stiff movements when actively moved; and

bradykinesia which is difficulty in initiating movement. There can be also be a lack

of facial expression and difficulties with swallowing and speech. There is no cure for

PD at present but there is a range of treatments available to help control the

symptoms and maintain quality of life. These include drugs, physiotherapy, and

surgery.

Stroke:

Stroke occurs when the flow of blood to the brain is disrupted. The effects depend

on the area of the brain that is damaged. It is a relatively common neurological

disorder. The risk factors include increasing age, hypertension, smoking, diabetes

and diet.

There is no specific cure. However effective treatment is available in the form of

intensive rehabilitation but recovery varies with each individual.


paul kyprianou and maria byrne-mccann

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