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Our right to be and do
Barriers to Employment for People
with Neurological Conditions
A report by The Working Life Project and
Network Employment
Funded by the European Social Fund through
Merseyside Expanding Horizons. Research
conducted by Paradigm.
March 2003
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Acknowledgements
This research would not have happened without the support and contribution
of several people.
Thanks to Nicola Daley, Colin Goodwin, Brian Simpson, Peter Kinsella, Pam
Wilkinson, The admin team at Network Employment, The Glaxo Neurological
Centre staff, Brian Bennett at Radical, Julie Olsen, Rebecca Beckwith, the co-
researchers David Britt, Bob Deus and Sue Brooks-Macdonald, the
professionals at The Walton Centre and employers across Merseyside who
took part in this project, and finally, the research participants with neurological
conditions that gave their time, energy and were willing to share their stories.
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Section 1 - Introduction
This report is about the employment experiences of people with neurological
conditions. It is the result of a partnership between The Working Life Project
and Network Employment who provide employment advice and support to
people with neurological conditions across Merseyside. It has been funded by
the European Social Fund through Merseyside Expanding Horizons and the
research was carried out by Paradigm, an independent training and
consultancy organisation.
The belief in this research began with a shared question – what is it that
stands in the way of the people we support gaining and retaining jobs? Is it
the employment ‘system’, or employers, is it health and other professionals or
people themselves – or a combination of factors or others unknown?
Although we may make assumptions about what we believe the barriers to be,
it is people themselves and those involved in supporting or employing them
that need to be listened to.
Our modest aims for this research were to achieve a clearer indication of
where to focus and channel the resources of the two projects – Network
Employment and The Working Life Project. What we uncovered was a
complex and compelling picture of people fighting desperately for their right to
be and do.
Being and doing
“The capacity to work is an important part of a person’s self-esteem. Work contributes to shaping the person”1
Being able to work, create, be part of something and contribute to others is a
fundamental part of life, and is intrinsically linked to who we are and how we
feel about ourselves2,3,4. Some research has even suggested that our
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physical well-being is linked to whether we are meaningfully occupied5. Paid
employment is one example of how we can meet our human desire to
construct and ‘do’. However, despite recent research showing a rise in the
number employers employing disabled people (65%), there are still concerns
about the lack of active encouragement of disabled applicants, employer’s
lack of knowledge and awareness about disability discrimination and the
number and type of adjustments made to workplaces to make them
accessible to disabled people6.
The barriers to employment for disabled people in general have been
explored, for example in the 1994 study ‘Working Through Barriers’7. In this
investigation a group of disabled people listed the main barriers they face in
looking for, or being in, employment as: ‘the benefit system, transport, lack of
information and advice, attitudes of employers, physical environment in the
workplace, level of qualification and skill’.
Similarly, in the more recent publication, ‘Disabled for Life’4, key barriers to
employment were described as financial (relating to benefits, uncertainty
about income), personal (type and severity of impairment and self perception
of capabilities), external (relating to knowledge, awareness or availability of
employment) and social (social attitudes and discrimination). Within this study
a significant number of disabled participants (37 per cent) claimed to have
experienced some kind of prejudice or unfair treatment in the workplace and
many people felt they had experienced prejudice during the application
process.
Neurological Conditions – finding a definition
It is from this backdrop of experiences of disabled people that we set out to
investigate the experiences of people with neurological conditions. However,
finding a definition for the umbrella term, ‘neurological conditions’, was to be
our first difficulty.
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A definition of neurological conditions given by the Neurological Alliance
states that,
“Neurological conditions result from abnormal function or damage (caused by illness or injury) to the brain, spinal column or nerves. They have various causes, many of which are not yet known.”8
The more familiar causes include stroke, multiple sclerosis, brain/spinal injury,
epilepsy, Alzheimer’s and motor neurone disease but the range extends to
include conditions such as CJD, Guillain Barre Syndrome and Rett syndrome.
The common features of neurological conditions described by Hewer9 are;
that they are large in number, there are few that are totally curable, they are
associated with many symptoms, they are a major cause of disability and
account for a high proportion of severely disabled people under the age of 65
and there are many adverse effects that can be reduced.
In addition neurological conditions can affect people at different stages in life.
They can be present from birth or have a sudden onset due to illness or injury,
and whilst some conditions may stabilise or improve, others can cause a rapid
or prolonged deterioration of a person’s quality of life.
With potential for such a wide scope of employment experiences, based on
very different conditions and/or very different presenting symptoms and
severity of impairment, we set out to include anyone in the project who had
been given a diagnosis of ‘neurological condition’ but acknowledged that this
would be a diverse group of people. We took our lead from the fact that the
two projects are services set up to support people with ‘neurological
conditions’.
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Section 2 - Methodology
Outline of the project
The project used a combination of research methods and involved three main
groups of people – people with neurological conditions, professionals involved
in supporting people with neurological conditions and employers. The
employer group was then split into those that we knew had employed a
person with a neurological condition and were already linked to either Network
Employment or The Working Life Project, and an equal number of employers
whose history of employing disabled people or not was unknown to us. These
were roughly matched in type and size of businesses to those in the first
group. Each group was sent questionnaires which, although covering similar
issues, were tailored to their particular standpoint. We followed up some
people with semi-structured interviews based on the major themes emerging
from the questionnaires.
Following the first two stages we held a focus workshop for people with
neurological conditions to present back the findings so far and define the
issues more clearly. A final developmental workshop was held with people
with neurological conditions and employer and professional representatives,
to share ideas and create possible strategies to overcome the issues raised
throughout the previous stages of the research.
Participatory Approach
Although the project had been designed and commissioned by people in
professional roles we adopted a participatory research model and recruited
three co-researchers who have or have had a neurological condition. These
three individuals had diverse backgrounds and all experienced a different
neurological condition. They were involved in all stages following the initial
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proposal, from preparing the application for ethical approval to the final report.
In particular the co-researchers influenced the design of the questionnaire and
the way in which the interviews and workshops were carried out.
Questionnaires
The questionnaires were developed as a means to narrowing down the broad
area of barriers to employment and were based on what disabled people had
said in earlier studies about barriers they had experienced.
We knew that our questionnaires were insufficient in themselves to thoroughly
investigate this area but we needed basic information around which to
develop the interviews and focus groups. Each of the questionnaires sought
information about the respondent and their views on what the barriers to
employment are for people with neurological conditions, or what they thought
about people with neurological conditions as employees. We sent out 386
questionnaires in total and had 100 responses. 42 were responses from
people with neurological conditions, 49 from professionals and a very low 9
responses from employers.
Interviews
The interview stage was a time for us to listen deeper to the issues that were
raised during the questionnaires. Each respondent to the questionnaire could
indicate whether they would be willing to be interviewed. 57 people initially
agreed to interviews. When contacted some people then decided to withdraw
from the project and some we could not contact. As a result, 39 people were
interviewed (21 people with neurological conditions, 13 professionals and 5
employers).
Focus Groups
The first focus group was designed to consolidate what we had learned during
the research so far. 10 people with neurological conditions came and
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expressed their views on the results so far and helped to define some of the
key themes.
In designing the project we had included a developmental dimension –
wanting not only to find out what the barriers are, but to explore ideas for
overcoming them. This final stage of the project gave an opportunity to be
creative and productive with our thoughts. Ideas were generated and
proposed as potential pilot projects. 12 people came – 10 people with
neurological conditions, 1 employer and 1 professional.
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Section 3 - Key Findings
This section presents the key findings from the different perspectives we
gained by involving people with neurological conditions, professionals and
employers. Under each major theme we present the findings from each
group.
Key findings
Across all the subgroups key themes were;
Barriers to employment
The neurological condition itself
The person’s own perception of their condition and resulting
incapacity
Attitudes of employers and colleagues
Lack of confidence or motivation
System issues
Things that help
Family and friends
Understanding and supportive employers
Self-determination and belief
The Glaxo Neurological Centre
About support
DEAs and employment service, employers and some health
professionals can be unhelpful
The Glaxo Neurological Centre, some health professionals and
some DEAs can be helpful
The support available is limited and uncoordinated
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More information and advice is needed across the board on the
support available
Theme 1 - Barriers to employment
People with neurological conditions said…
The majority of people with neurological conditions had experienced some
form of barrier to employment, whether they were currently employed or not.
There were examples of discrimination, lack of understanding and support
and a feeling of having to ‘fight the system’. People were incredibly open and
honest about the situations they faced, often with little knowledge about what
their rights were and who could help them.
The neurological condition
The people with neurological conditions we interviewed ranged from being
employed, medically retired, unemployed, volunteering and off sick. There
was also wide variation in how long people had been diagnosed with their
condition and what disabilities they had been left with.
Many people said their condition itself was a barrier to employment, and
restricted them from doing certain jobs. In particular, people commented on
difficulties with short term memory, reduced powers of concentration, impaired
cognitive skills, and fatigue. Some people felt they had lost jobs as a result of
these things and for others it stands in the way of career progression:
“You find you’re at a crossroads. I had something terrible happening to me
and then I found myself without a job”
“it’s going to be harder for me to diversify my career with a disability”.
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However, people whose disability was ‘invisible’ equally face prejudice for not
‘displaying’ obvious symptoms of their condition:
“Because it’s invisible it’s a barrier – people don’t understand”
“If you look outwardly normal people think you’re fine”.
Attitudes
Many people said the negative attitudes of their employers and colleagues
and their unwillingness to support them or understand their condition is a
huge barrier to employment. Alarming accounts were provided of the
difficulties in fighting for adaptations and modifications to working
environments or practices, and consequent labelling as ‘trouble makers’.
Several people with MS shared experiences of having to battle for access to a
cooler work room to help manage their condition. Other people felt their
employers had made false assumptions about their condition – in the case of
someone with epilepsy this meant they had tried to wrongly manage a
seizure. All these situations had led to more anxiety which was often cited as
a factor that made some neurological conditions worse.
Some people said they felt their colleagues resented them because of their
condition. A few people said they thought their colleagues were concerned
about the impact it might have to their workloads and that people assumed
they weren’t “pulling their weight”.
Considerable ignorance about neurological conditions had been
demonstrated by many employers and colleagues. Unsurprisingly this gave
rise to concerns that employers consider people with neurological conditions
as ‘stupid’ or confuse their diagnosis with a mental illness. In one case even
asking for support created feelings of inadequacy:
“I asked for help once but they made me feel like an imbecile. I don’t want my
illness to define me.”
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Lack of confidence and motivation
The returned questionnaires indicated that most people felt a lack of
confidence or self esteem was a barrier for them in employment and this issue
was followed up during the interviews. People said that their lack of
confidence sometimes came through having to fight for what they needed,
such as changes to their work environments. The frustration caused by trying
to change situations also affected the motivation to look for work:
“My motivation has been taken out of me little by little with all the jobs I was
going for and not getting anywhere.”
A big cause of concern was the unpredictability of a person’s condition and
how this can affect day to day confidence levels and feelings of adequacy.
Several people talked about their fears and anxieties about when their
condition would deteriorate and then how they would rebuild their confidence
following a relapse:
“After you’ve had a really bad relapse you lose your confidence and no-one
else can give you your confidence back.”
People had found ways of coping with these issues and cited familiar
situations, family, friends and the right conditions in work as things that help:
“I feel like a new person. Partly because I’ve been diagnosed and I can deal
with it and partly because things have been put in place at work.”
Many people said they felt very confident about working and knew their skills,
abilities and value in the workplace. A few people said they had felt over-
confident about what they could do and this had caused them problems with
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taking on too much. In some cases people were hoping that either the right
work environment or meeting the right employer would enable them to live up
to their expectations.
The system
It is difficult to describe the sense of ‘us versus the system’ that came across
throughout the interviews, suffice it to say that no-one said bureaucracy, rules,
regulations, legislation, the benefits system, systems and structures helped.
Despite government legislation about the rights of disabled people in
employment, people shared experiences of their employers doing the
minimum that was required of them. In addition, for some people, even
getting the minimum had been a battle and had taken a long time. One
person we interviewed was still waiting for his employer to decide what would
happen with his job and felt that deliberations were ‘going round in circles’.
Some people also felt they hadn’t been given the right information when they
were diagnosed about how to protect their jobs and navigate their way
through employment:
“I didn’t know what to ask for. The leaflet you get, they’re all uplifting stories
that are the exception to the rule – it lulls you into a false sense of security, I
think that’s really wrong. There are no guidelines at all about what you need
to protect yourself.”
Health and safety legislation was cited as an inflexible barrier that
automatically excluded some people from certain jobs and created fears for
employers about how an employee with a neurological condition might
behave:
“I’ve applied for loads of jobs, teaching, training, social work, nursing – but
when I’ve put epilepsy down you don’t hear anything.”
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In some cases people said they thought managers were fearful of litigation.
The benefits systems was also seen as a barrier – both in the difficulty some
people have with understanding the changes and the prospect of losing
benefits with no confidence in a job lasting.
Professionals said…
Although we had approached professionals in a variety of roles during the
questionnaire stage, we only received returns from professionals in ‘health’ or
medical services. This should be taken into account throughout the reading of
this report. We were also unfortunately unable to include professionals from a
major provider of support and rehabilitation for people with neurological
conditions as they decided, as an organisation, not to take part in this
research. All the professionals involved in this project therefore are either
based at, or connected to, The Walton Centre for Neurology and
Neurosurgery in Liverpool.
The overwhelming view of professionals was that people with neurological
conditions face incredibly resistant barriers to employment. They gave a
perspective on what support is being offered and how they might be helping.
The majority of professionals we spoke to thought people with neurological
conditions have the potential to be good employees – and some professionals
saw employees with neurological conditions as the same as any other
employees:
“I don’t see them as any different from anybody else.”
Many professionals acknowledged that a person’s condition and their level of
disability are factors in whether a person can perform well in a particular job.
The wide spectrum of possible outcomes of a neurological condition from ‘no
disability’ to ‘functionless unaided’ would then have an affect on a person’s
ability to work and the impact they might have in a workplace:
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“Employers are not meant to be altruistic, they have a business to run. Some
seriously disabled people are unemployable or present unreasonable hazards
to themselves and/or others in employment situations.”
In some cases professionals thought people with neurological conditions had
the potential to be better employees as they may have a sense of something
to prove, and are possibly more likely to value the opportunity after many
rejections and negative experiences. Several professionals also expressed
concern that a wealth of skills and abilities would be lost if people with
neurological conditions were not able to gain or retain employment.
The neurological condition
The majority of professionals interviewed said the person’s condition could be
a barrier to employment. This could be due to not having control over the
condition, the limitations the condition may impose or a result of personality
changes such as aggression, brought on by some conditions. Again there
was recognition of the difficulties faced if the condition was ‘invisible’:
“Some problems are caused by the condition not being visible…. they can’t
see your head spinning or the extreme tiredness that comes over you, in their
view you look normal.”
Attitudes
Many professionals thought employers are unsupportive towards people with
neurological conditions and have little understanding of individual conditions.
Employers are possibly then less likely to employ someone because of their
condition and the assumptions they make about what implications it would
have on their business:
“In this day and age people will not employ anybody they think might be a
drain on their resources or profit.”
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Other professionals expressed the belief that the employer’s lack of
understanding about a person’s condition might mean they don’t provide the
support someone needs:
“The environments people work in and the people there could disable them
more than the illness itself.”
Lack of confidence
As with the responses from people with neurological conditions, the majority
of professionals thought lack of self confidence could be a barrier to
employment:
“Low self esteem is a barrier for anyone, combined with a neurological
condition this makes an enormous impact.”
There were a number of comments about society’s perception of disabled
people – seeing the condition rather than the person - and the effect this could
have on a person’s self-confidence. In addition, if people continually face the
negative attitudes of employers and colleagues their self belief and
confidence is gradually eroded:
“The person with the condition may develop low self esteem because they
stop believing in themselves, after this happens any small knock or tap can
have a further negative effect upon them, taking them even lower.”
Similarly to people with neurological conditions, the unpredictable nature of
some conditions and how their employers may react to deterioration in
performance or absences, was seen as a potential cause of loss of self-
confidence. It some situations guilt and self-consciousness about not being
able to support colleagues also creates low self esteem. Some professionals
said that lack of self confidence meant people were less likely to ask for the
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help and support they needed, and thus they are trapped in a cycle where
they lose more confidence as they struggle to continue without support:
“The nature of a person’s condition may make them feel more vulnerable
about being independent as they may feel less self assured about asking for
guidance and help”
Lack of support
Unlike people with neurological conditions, the professionals we spoke to
focused on lack of support from employers as a barrier, rather than general
‘system’ issues and bureaucratic barriers. Amongst the problems cited by this
group were lack of suitable transport and architectural or environment barriers
which create inaccessible workplaces. One professional suggested that
although employers may genuinely want to help, some adaptations and
modifications may be financially or structurally impractical for them to provide.
The system
We sought the views of professionals about the issue of finance to people
with neurological conditions who are working/receiving benefits. Many
professionals said the benefits system has a negative impact on people. This
is due to the complexity involved in some of the paperwork and negotiating
the system to get what you are entitled to. Many professionals also said it
could have an adverse effect on people looking for work and make them
complacent. Some professionals thought there were disincentives to working
when levels of benefits are above what a person could earn.
A few professionals said people may look for low paid or part time work so
their benefits are not affected but this would often restrict the type of work a
person could pursue. One professional commented on the lack of creative
options around this issue:
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“There’s no half way solution, they can’t dip their toe in employment and not
lose all their benefits.”
There is a concern that people could return to work and lose their benefits and
then be faced with a major deterioration in their condition. Regaining their
benefits may be time consuming and difficult, with no guarantee they would
have the same level again.
There were some comments about the feelings people have about claiming
benefits and a suggestion that some people may not make claims as a denial
of their disability and the ‘stigma’ of accepting financial support.
Employers said…
Employers (although few in number) talked about their feelings about
employing a person with a disability, how inadequately prepared they were
and what would help them take steps to change the situation.
All of the employers who responded to the questionnaires said they felt
people with neurological conditions had the potential to be good employees.
Employers at interview recognised that the right support and advice would be
crucial in determining whether this would be the case. Some employers knew
there was a vast difference in neurological conditions and the varying levels of
disability they could present, and there was some creative thinking expressed
as to the type of skills and experience a person with a neurological condition
could offer a workplace.
One employer presented an honest view of the difficulties employers may feel
when an employees’ condition has deteriorated and their performance is
affected. Knowing how to manage this situation without causing distress or
offence would take a great deal of sensitivity and may deter employers from
employing a disabled person in the first place.
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The condition
Some of the employers identified a person’s condition as a potential barrier to
employment. There were some comments that the characteristics generally
expected and valued within the workforce are sometimes impaired by a
person’s condition and that in some cases attention span may be more limited
that ‘non-neurologically impaired’ people.
Attitudes
Many of the employers considered the general ignorance in society about
neurological conditions and disability is a barrier to employment for people
with neurological conditions. One employer said she felt applicants may try to
hide their condition from fear of what potential employers might think.
Negative attitudes and a lack of understanding from both employers and
colleagues about a person’s condition were seen as an issue by the majority
of employers we spoke to, and a symptom of devaluing disabled people:
“There may be an issue if they felt they weren’t being integrated or accepted
as part of the organisation. I think it’s [negative attitudes] to do with the whole
ethos of the organisation, if it’s [the organisation] valuing people then it
shouldn’t occur.”
One of the reasons given for why this may be happening was the fear of
employers and colleagues about how to act and react:
“The fear factor, the unknown – do we need to treat people differently, or do
anything special? How do we treat people with neurological conditions? Do
we even need to be aware of them? I think all of these can create barriers – a
lack of knowledge and understanding from the employer.”
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Finally, some of the employers said that there is a general lack of creative
thinking about the possibilities and problems of employing a disabled person,
particularly around the adjustments and adaptations they could make to a
person’s job specification and/or working environment and practice.
Lack of confidence
This issue was not greatly discussed by many of the employers although a
few employers thought an individual’s perception of their abilities and
limitation would be a barrier. In particular, there was a feeling that some
people were reluctant to take opportunities because they did not want to
expose themselves to failure. Another view was that people need to adopt a
‘realistic attitude to their own capabilities’ rather than over-estimate what they
can do and thereby set themselves up to fail and risk losing their job.
Lack of Support
Some of the employers we spoke to said it is not only the lack of support but a
general reluctance by employers to provide support that is a barrier to people.
This could be caused by the lack of funding opportunities available to adapt
workplaces or an employer’s lack of knowledge about what funding is
available.
One of the employers raised the issue of health and safety but stated she felt
it was not the guidelines themselves that are a barrier, but any individual’s
interpretation of the rules and regulations to the disadvantage of disabled
candidates.
Discussion
It is perhaps unsurprising that each of the groups we involved in the project
shared concerns and issues about what the barriers to employment are for
people with neurological conditions but it adds weight and value to the themes
20
we have presented. However, it is apparent that each group holds a slightly
different standpoint.
People with neurological conditions were by far the most negative about the
limitations of having their condition, whereas both some professionals and
some employers said they don’t see any difference between a person with a
neurological condition being a good employee and anybody else. For people
with neurological conditions, is this then a result of living with their condition or
living with the disabling barriers they face in trying to work?
For those without the experience it is difficult to understand how it feels to
face prejudice on a daily basis. The combined frustration and weariness that
develops from the constant battle to establish the optimum conditions for work
without being too much of a ‘nuisance’ is powerfully communicated by the
people who took part in this project. The non-financial rewards that work
provides, self esteem, sense of purpose and of making a contribution,
gradually eroded by the fight to get or keep a job. Unsurprisingly,
professionals held a similar view – but quite unexpected was that employers
involved were acutely aware of the impact their negative attitudes have on
people.
The comment that lack of self esteem is an issue for us all – and is only
compounded by a neurological condition - was insightful to the fears we all
have about how well we perform and what other people think of us. The
unpredictable nature of many neurological conditions means this is an on-
going reality for many people and their subsequent regrets about of lost skills
and abilities after deterioration are impossible to imagine. In addition,
confidence building is unlikely to happen when people face ignorance and
lack of support.
When questioned about what support is available to people in this area,
professionals described a mixed and sparse picture, which seemed to rely on
a person’s ability to seek out and demand help – something that is particularly
difficult for those feeling low or disempowered. Potential sources are;
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Rehabilitation services – although “not suitable for everyone”
Social services
Counselling
Information and advice from volunteer organisations
Patient support groups
Whilst one professional said the chances of a person accessing support
around building self-esteem and confidence is “next to none”, another felt it
was beyond the realms of his role to worry about:
“I don’t have any dealings with support. They go out of the door and don’t
exist.”
Finally, the bureaucratic and system barriers people face seem to be a
symptom of the attitudes people have about disability generally. The
determining factor to people working, or accessing the right support within
work, hinges on the individual employer/professional, and their interpretation
of their role, and the rules and regulations that guide them.
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Theme 2 – Things that make a difference
People with neurological conditions said…
Family and friends
An overwhelming majority of people said the invaluable support of family
and/or friends helped them to cope with all the barriers they faced. This was
through the knowledge that the supporters were on hand and were offering
reassurances that they are loved, valued and respected for the things they
can do. In some cases, more practical help was also provided.
Some people said they had got jobs through contacts of their family or friends
– a personal link had overcome the prejudice, fear and assumptions of an
unknown employer. Other people said help with filling out applications forms
and guiding through medical appointments came from family members.
Self determination
A spirit of self determination ran through many of the stories we heard, people
overcoming difficult situations through shear self-belief:
“What helps me through? My own gumption. My own will not to let it defeat
me.”
Feelings of wanting to prove abilities and continuing to fight for things through
personal motivation were common.
Many people had channelled their energy into self-development. Some had
joined college courses learning new skills or had attended confidence building
23
courses. People said concentrating on achievements through hobbies eased
the frustration and gave them a sense of self-worth. A number of people had
opted to work as volunteers saying it gave them a way of working which had
less stress attached to it, offered easily adaptable workloads, had no
implications to their benefits and enabled them to make a valued contribution.
Understanding and supportive employers
By far the most crucial factor that determined good or bad work experiences
was the support and understanding (or lack of it) from employers and
colleagues. Only a few people had good experiences to share, and described
situations where their job has been tailored to them, or was adapted after they
were diagnosed with their condition:
“I now have a job I can do at my own pace, in my own time.”
Only a minority of people involved in the project had actual examples of
having their job specifications modified, adaptations to their workspaces,
flexible working hours and flexible working practices. Good relationships with
line managers were particularly important in these scenarios and their
encouragement and support was immensely valued:
“My boss now, he’s great – he tells me what to do and shows me how to do it.
If I need it he’ll show me again. He’s a fantastic boss.”
An important aspect of this support for one person interviewed was the
reassurance that she could be open and frank about her condition. She feels
she can admit to her manager when she is feeling low rather than struggling
to cope.
Finally, many people said colleagues can provide tremendous support:
“They didn’t see me as the weakest link. It would have been easy to resent
me but they didn’t.”
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The Glaxo Neurological Centre
A source of support and advice for nearly all the people interviewed was The
Glaxo Neurological Centre in Liverpool. This houses a number of support
groups for various neurological conditions and projects. Many people
mentioned The Working Life Project specifically for the advice and support it
had given them about employment issues. People also said it gave them a
chance to meet other people in similar situations, access to self-development
courses and counselling services.
Professionals said…
Family and friends
Most of the professionals said families were ‘key’ in the support of a relative
with a neurological condition. However, as much as this could be positive
there were several concerns expressed about the potentially negative
influence a family could have:
“The role of the family is key. The downside might be that they are over-
protective, presenting the patient with additional barriers to overcome.”
“Families provide key support when it is good. But well meaning or mistaken
support, like wrapping people up in cotton wool is equally counterproductive.”
Many professionals said they felt families were naturally very worried and
therefore tended to overprotect or ‘smother’ their relatives, limiting what the
person could then do. Many professionals said this could be avoided if
families were given ‘specialist’ training and education about their relative’s
condition and how they could become effective enablers. They should be
25
encouraged to “let them show their capabilities” and informed about the ways
they can be part of supporting change for disabled people.
A few professionals shared concerns about the impact a neurological
condition can have on family life and the role a primary carer adopts. It was
felt by one person that if the carer becomes dependent either financially or
emotionally on that role – drawing their own self-esteem from the situation,
they can be reluctant for their relative to become more independent.
Self determination
Little was said by professionals on the importance of a person’s self-
determination in overcoming barriers. A few people commented that some
people, ‘battle on regardless’ of the barriers they face and, whilst some people
are happy to give in to their condition, “others are all the more determined to
prove that they can do the job.” One professional said she felt having a
positive self image and sense of worth helped people in employment.
Understanding and supportive employers
Professionals were in agreement with people with neurological conditions
about how critical understanding and supportive employers are to removing
barriers to employment. Many professionals talked of the power employers
have to reassure their employees and ease their self doubt:
“People need sympathetic understanding related to their disability and to feel
that they are still worthwhile employees.”
There were a number of comments about the need to raise awareness of
neurological conditions amongst employers and colleagues and the public in
general. Some professionals said educating employers about how to support
an employee with a neurological condition could prevent people losing their
jobs:
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“Educating employers whilst a diagnosis was being made would help.”
A few people suggested the difficulties may be in knowing where to go for that
help and support:
“If you don’t know what you’re looking for you don’t know where to go.”
Again, as with people with neurological conditions, some professionals said a
trusting and supportive relationship between employer and employee was
essential for an honest disclosure of the problems a person may be facing,
and a ‘frank discussion’ about what support is needed.
Accessible jobs and workplaces
Amongst the comments about supportive and understanding employers,
many professionals listed practical changes employers could offer that would
help people. These included;
Sensory adaptations like large print
Adaptations to transport facilities, car parking
Flexible hours
Working from home
Rest breaks
Different seating
Job modification
Access to buildings/toilets etc
Employers support for health and safety issues
One professional had a radical suggestion that employers should make these
changes anyway, thereby being truly inclusive and welcoming to all
prospective employees.
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“Rather than making special changes to accommodate a disabled person,
these could already be in place as a matter of course.”
Employers said…
Understanding and supportive employers
All the employers we spoke to said people needed the right support within
their workplace. Some of the employers gave creative and sensitive
examples of how they had supported previous employees. There were many
comments about the importance of tailoring support to people’s individual
needs:
“Job specifications need to be modified to accommodate individuals with
limitations. Applicants need support specific to their needs.”
A few of the employers said honesty was important and one employer raised
an interesting perspective on this saying honesty was required from the
employer in “defining what the job demands and assessing the person’s level
of performance.”
Colleagues were seen by some employers to be a good source of support,
however, as articulated by people with neurological conditions, it is important
that this is well managed to prevent colleagues becoming resentful:
“Colleagues must not feel they have to ‘carry’ a disabled person, which could
lead to resentment and lack of co-operation. There needs to be preparation
and education of the entire workforce to ease a new disabled employee into
the workplace.”
One employer spoke openly about the need for employers to be supportive to
their employee in addressing any health and safety issues. However, rather
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than this process becoming one of the bureaucratic barriers people face, she
offered an insightful view on how this could be done:
“There’s room to work within the processes that are available. It’s about
knowing the parameters we can work within – sometimes we’re quite limited
in our thinking though.”
Accessible jobs and workplaces
Finally, as with professionals some employers commented on practical steps
that they could take to minimise barriers for people with neurological
conditions such as “adopting flexible working practices” and providing a
“physical environment conducive to the individual”. One employer recognised
that this is not necessarily a one-off task, but should remain on their
managerial agenda:
“Employers need to frequently review their employment situation in their
company to ensure that the adequate support is provided for disabled
employees.”
Discussion
Quite naturally family and friends provide immense personal support to people
with neurological conditions. The different perspectives given by
professionals highlight the sometimes complex, and not always positive forms
this can take. However, in the absence of easy to access, resource-full,
struggle-free alternative support, families and friends continue to be vital –
practically, and more importantly, emotionally.
It seems that both professionals and employers seem to have a good grasp
on the factors that help people overcome barriers to employment but we shall
discuss the difficulties they may have in accessing and therefore providing
this support in the next section. The importance of raising awareness and
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educating employers came through from both of these groups. However, it
would be important to consider ‘how’ this is done – despite the potential
positive effects some people might feel uncomfortable being made an
‘example’ within their workplace.
The most common experience from people with neurological conditions was a
negative experience within employment. It seems therefore that enlightened
employers are rare. If this is the case, the call from professionals and
employers for people to be honest about their conditions is a difficult request
to fulfil. If you have previously lost your job or faced continual struggles
because you were honest, is it not tempting to hide or ‘play down’ your
condition next time?
Lastly, some people shared good experiences where they had found
fantastically supportive employers. These stories came from people with
different neurological conditions, different levels of disability and different
predictability of their conditions – which despite all the potential barriers,
shows it can be done!
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Theme 3 – Current available support
People with neurological conditions said…
About professionals that provide support
The group of professionals identified by most people with neurological
conditions as the most helpful were health professionals:
“All the ones I’ve seen have been really great. I’ve felt really at ease with
them.”
Some named particular consultants or specialist nurses who had provided
very good advice, information and support. One person named the Brain
Injury Rehabilitation Centre at Rathbone Hospital as invaluable to her:
“they were really good people, everyone there were angels as far as I was
concerned.”
Many comments were made about the support of General Practitioners. Most
of these were positive although a few people said their doctor either didn’t
understand the support they needed or they had difficulty getting to see the
same doctor twice:
“My Doctor has been fantastic – he knows who I need to contact.”
Many people said The Glaxo Neurological Centre and The Working Life
Project were the most helpful professionals they had met, and some people
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said the professionals at Network Employment, a supported employment
agency, had helped them.
Some people said they had very unhelpful and unconstructive contact with
professionals providing support. In particular, although a few people said they
had some useful and helpful contact with a Disability Employment Adviser, the
majority complained of the lack of support they had received from DEAs and
the Employment Service:
“I’ve tried employment advisers but I’ve never had any luck out of them. I
thought I’d try and sort it out myself.”
“The disability officer at the job centre was more eager to brush me off the
books than help me get a job. I need help but I don’t know where to turn to
get it.”
“Certain individuals within the employment service have been less than
helpful.”
Some people said that individual Occupational Therapists and
Physiotherapists had been unhelpful. A few people had been disappointed by
the lack of help from their consultant, General Practitioner or social worker.
Professionals said…
About professionals that provide support
Many professionals of various disciplines said that health professionals did
not have the time, resources or scope in their role to provide this sort of
support. There were some comments about doctors in particular:
“Doctors can be inconsiderate and impersonal.”
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One person said doctors can have an impact on a person’s self-esteem or
confidence as they are not concerned with the “whole” person, but the
condition they treat. A few people thought doctors could be over-protective
and encourage patients to remain out of work by presenting the ‘right’ reports
(those that present the disabled person as unable to work) or repeating sick
notes indiscriminately.
Some people thought other health professionals such as nursing staff and
therapists were unhelpful if they haven’t got a good understanding of the
neurological condition. A few people said the attitudes and beliefs of health
professionals about a person’s condition could have a powerful effect on
discouraging a person from seeking a return to employment – and raises
concerns about the difference knowledge and education makes:
“If they [health professionals] act in this way, what must the behaviour of the
members of the public be like?”
However, some professionals cited complementary therapists who provide
“more positive reinforcement” and specialist nurses who “show there is life
after diagnosis” as helpful health professionals.
Most professionals knew of The Glaxo Neurological Centre and some
mentioned the project worker for The Working Life Project as a valuable
source of support:
“He’s taken away the anxiety about work with people individually. He gets to
know their circumstances and expectations.”
A few professionals said DEAs or the Job Centres were not providing a useful
service to people with neurological conditions and equally, human resources
staff within organisations that “don’t fully understand the condition an
individual may have”.
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One person saw past the varied labels and roles professionals may have as
being the key factor in whether they were helpful or not, and suggested it is
down to each individual’s personality and qualities. Helpful professionals are
those:
“people with ‘people’ or communication skills of whatever profession.”
Finally, one professional suggested politicians were responsible for the lack of
support people experienced:
“Who’s least helpful? No one professional group stands out – politicians
maybe, yeah politicians, thinking about it.”
Support available
Professionals also commented on their own lack of knowledge of support
services for people with neurological conditions around employment issues.
The majority of professionals said there was little available support and many
1 Johansson, U and Berbspang, B. (2001). Predicting return to work after brain injury using occupational therapy assessments. Disability and Rehabilitation, 23 (11), 474-480.2
? Chaplin, J.E. and Thompson, P.J. (2001). Employment. The National Society for Epilepsy Electronic Library. Accessed at www.e-epilepsy.org.uk on 22/08/02.
3 Thompson, P.J. (2001). Psychosocial aspects of epilepsy. The National Society for Epilepsy Electronic Library. Accessed at www.e-epilepsy.org.uk on 22/08/02.
4 Grewal, I., Joy, S., Lewis, J., Swales, K. and Woodford, K. (2002). ‘Disabled for life?’ attitudes towards, and experiences of, disability in Britain. Leeds: HMSO.
5 Ross, C. and Mirowsky, J. (1995). Does employment affect health? Journal of Health and Social Behaviour, 36, 230-243.
6 Goldstone, C. and Meager, N. (2002) Barriers to employment for Disabled People. DWP Report. London: HMSO.
7 Swindon Living Options and The Spastics Society for the Employment Service and Wiltshire Committee for the Employment of Disabled People. (1994). Working Through Barriers. London: The Spastics Society.
4
8 The Neurological Alliance. (2002). Levelling Up: Standards of care for people with a neurological condition. London: The Neurological Alliance.
9 Hewer, R.L. (1997). The Economic impact of neurological illness on the health and wealth of the nation and of individuals. Journal of Neurology, Neurosurgery and Psychiatry, 63 (1), 19-23.
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gave examples of people they knew that had experienced immense difficulty
trying to get support. An important observation was that not only was support
lacking, but the little there is seems to be managed in a dysfunctional way:
“There is limited help and a lack of anyone co-ordinating the help.”
Some professionals said the law provided a structure to the support people
are entitled to, particularly the Disability Discrimination Act. But rather than
this acting to protect people’s right’s, there was a feeling that this could be
manipulated by individual employers to suit themselves:
“the legislation on paper appears very supportive but in practice the individual
employer or line manager is key and can get away with prejudicial conduct in
spite of the legal framework.”
A few professionals said employers ignored their responsibilities to employ
disabled people or filled their ‘quota’ with the ‘least disabled’. One
professional commented that if people experienced discrimination this is both
difficult and costly to redress.
Professionals did list a number of sources of support available to people
including:
College programmes that prepare people to go back to work
Access to Work – “to purchase equipment”
Support groups
DEAs
Occupational Health Officers
However, there were many comments about how difficult it is for people to
find out what is available to them and how they can access it.
Employers said…
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Support available
The majority of employers said there was little or nothing in the way of support
for people with neurological conditions in employment, and a few said there
may be support but they had no knowledge of it. There was concern that
information “doesn’t seem to be getting through” to employers. One employer
was able to list a number of sources she felt offered support to people which
included Network Employment, DEAs and the Job Centres. Having taken the
initiative and linked herself with an independent consultant to advise the
organisation on disability equality issues, she had discovered a wealth of
contacts:
“There is a whole mechanism there to support you if you express interest, but
I’m not sure if it’s strong enough if you’re not expressing interest yourself.”
However, there is the feeling shared by professionals, that this lacks co-
ordination and clarity making it hard to access the right information:
“with so many agencies it’s hard to pick your way through.
”
Most of the employers we spoke to commented on the general lack of support
they felt in issues relating to employing disabled people. Some suggested
that there should be more low effort information readily available, for everyone
involved - a “‘how to’ for employers, colleagues, people themselves.”
Some employers were aware of the implications of government legislation
about employing disabled people in their organisation, and felt it had a
regulatory effect on employers’ behaviour. There was concern though that
this alone does not mean employers’ are genuinely changing their practice. It
was questioned whether legislation only encourages employers to:
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“Create situations where the appropriate box is ticked without real
commitment to providing meaningful employment and support.”
One employer who works for a large organisation shared developments they
were making towards offering greater support to disabled applicants. This
involves offering pre-employment counselling and training, guaranteed
interviews for disabled applicants where their needs can be evaluated and
support for these considered, and drop-in centres for applicants to meet their
employed peers and share experiences. However, it was acknowledged that
this would only operate in ‘specialist’ areas of the organisation and would not
be widely available.
Finally, one employer felt that despite the intention to look for external
resources and strategies that could provide support to people, the most
significant type of support possible is the day to day ad hoc support that a line
manager and colleagues can give.
Discussion
The type and nature of support available to people is patchy and seems to
rely heavily on the personality, character and personal belief of the individual
behind the service. There are some disturbing stories of the negative
interactions people are having with professionals who are paid to provide
support, but mostly this related to individuals rather than whole services. The
one aspect of support that does not seem to be working is the employment
service and Disability Employment Advisers. In some cases, the contact
people had with this service had put them off looking for work at all. Whether
it is the way this support is offered or what it involves it is clear that further
investigation involving the employment service would be interesting.
A significantly positive aspect of support to people on Merseyside is The
Glaxo Neurological Centre including The Working Life Project. The services
provided include practical support, information and advice, and when
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required, an emotionally reassuring presence for neurological patients, their
carers and families. How this type of support - getting to know affected
people’s individual situations and tailoring useful and constructive support -
could be extended to other parts of the country, is a matter demanding
serious consideration.
A repeated theme across the groups is the lack of co-ordination of support
available. The systems for informing on what’s out there and how to access it
are not working for people with neurological conditions and employers alike.
It is debatable which of the existing professionals and statutory bodies, should
or could lead this process. Maybe consideration should be given to
developing a new and independent role?
From the current comments from health professionals, there is no clarity over
where the health or medical related support ends and the social/emotional
support begins. This is likely to remain a blurred issue. However, one
professional gave an interesting perspective on the evolution of ‘health’
support:
“After, ‘am I going to die?’, ‘can you cure it?’, ‘work’ is the third issue people
bring up when given a diagnosis of a serious neurological condition. There’s
lots around educating people with neurological conditions about their
condition, but we should change the emphasis and realise people want to
know about life planning and quality of life issues.”
Finally, there is a shared concern about the effectiveness and impact of
legislation in protecting the rights of disabled people and promoting work
opportunities. The comment regarding the ‘unhelpfulness’ of politicians
acknowledges the influences that will continue to effect the wider picture.
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Section 4 - Conclusions and Recommendations
The workshops…
Our aim for the first workshop was to present back the research findings to
the group and gain clarification about key themes. We gave the group
information from the questionnaires and interview stages and prompted
39
discussions between people about their shared/varied experiences. The
workshop produced a list of statements about barriers to employment that
were agreed by the group. These are shown below.
The lack of accurate knowledge about disability generally and/or particular conditions leads to difficulties in the workplace. Employers tend to make assumptions about the implications of a condition with very few facts.
Experiences with employers and professionals can vary according to the individuals you meet and their personal attitudes and beliefs
A person’s condition itself could be a barrier. This is helped by other people’s knowledge and understanding and having appropriate support to manage difficulties, e.g. planning ahead, memory difficulties etc.
Being labelled doesn’t help.
There is a general unwillingness by employers to explore, understand and find out about a condition.
Finances/benefits are often a disincentive to working.
Bureaucracy/systems/structures within the workplace are another barrier – but this can depend on the person you are faced with and their interpretation of the ‘rules’.
It takes an incredible amount of time to sort problems out and get through the ’red tape’.
There have been many negative experiences with Disability Employment Advisers who often are very unhelpful and have little specialist knowledge and little time to listen.
Support from health professionals, colleagues and voluntary organisations can really boost confidence
Without knowing the detailed results of the previous stages, the first focus
group reiterated many of the issues and concerns reflected throughout the
research.
The second workshop focused on the future – how can we overcome the
barriers that clearly exist for people. The brief was to imagine and create the
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seeds of ideas which could translate into pilot projects. Whilst it was difficult
for everyone involved to feel positive – particularly participants who are
currently struggling to resolve situations of discrimination – the group
developed many interesting ideas and suggestions. Some of these are
explained below.
To produce an information resource for employers and Human Resources managers – covering neurological conditions, current regulations on employing people with disabilities, support available, penalties for non-compliance, case studies of successfully employed disabled people.
To develop a programme of retraining for health and safety officers and other professionals involved in interpreting rules and regulation around disability awareness.
To produce an information resource for people with long term neurological conditions and people who are newly diagnosed.
To produce ‘real life’ fact sheets – with constructive but honest perspectives about employment written by and for people with neurological conditions.
To develop and run awareness sessions for employers about neurological conditions.
To create and run a ‘mentorship’ project - developing workplace mentors who are ‘in-house’, objective sources of support.
Out of work – to set up a database that can be a resource of ‘buddies/mentors’ of other people who are going through similar situations.
Reflections on the research
This research project has explored barriers to employment and the issues
surrounding them for people with neurological conditions from the
perspectives of people with neurological conditions themselves, professionals
and employers. We acknowledge that this project is limited geographically as
it is confined to the Merseyside area and involved people with neurological
41
conditions known to 2 projects and professionals connected to one major
specialist health support provider.
We have not therefore gained perspectives from people with neurological
conditions who did not need or want (or know about) either of these projects.
This may be significant in that there may be many people either successfully
supported in employment or who have given up hopes of working that have
never needed the support of these types of projects. In addition, we have a
limited professional representation.
The low response by employers was expected, partly because of the other
demands and time pressures employers have and partly because of their
concerns about what the project may involve. This too will affect our results
as negative and unsupportive professionals are unlikely to respond to a
project which may reveal their discrimination. The employers that were
involved in this project however, were open, honest and able to give a frank
view of the difficulties they face. However, whilst we have reported back what
the small number of employers said, it is too small a group to generalise our
findings to other employers.
Despite the limitations, this project represents an ambitious and exciting first
step into considering the issues around employment for people with
neurological conditions. It has shown that the barriers are real and complex.
The reality of coping with a neurological condition and managing the effects
this may have on everyday life is a mountain to climb in itself. Having then to
deal with exclusion from working life or having continual battles to fight in your
workplace is harmful and unfair.
We take an incredible amount from our jobs besides money – self-worth,
relationships, sense of achievement. The feelings and emotions expressed
by the people who took part in this project illustrated the frustration of being
denied these opportunities and the ripple effect this can have on the rest of
your life. Within the current support systems for people with neurological
conditions and employment there are undoubtedly incredibly passionate,
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inspired, hard working individuals. But there is clearly a missing link, or
gaping hole, in the way support is arranged and failure in the way it has
developed.
Whilst this project has merely touched the surface of these issues, it has
exposed deeply felt confusions and frustrations. Perhaps most importantly it
has allowed the people most involved a voice to ask the questions that need
to be answered. The perceived and experienced barriers to employment are
identified and issues around why these exist are raised. Potential avenues for
future development and investigation include:
Evaluation of the pilot project ideas with a view to selecting a small
number to develop, review and implement
A wider ranging investigation of barriers to employment focusing
on the views of professionals within the employment service,
social services and voluntary organisations
Imagining and developing alternative ways of seeking out the
views of employers in a non-threatening way
Focusing future investigation on human resource professionals
and health and safety professionals and the guidelines that govern
their roles
And some of the issues waiting to be explored are:
What is the definitive picture of the support options currently
available to people, how do they access them and what are the
most effective ways of communicating this information and any
changes that may occur?
What are the barriers for employers in accessing information and
support?
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How can the support services work in partnership more effectively
with people with neurological conditions?
How can professionals and employers connect and offer joint
support to people with neurological conditions?
What are the implications for the training and development of
professionals in all areas?
What are the most effect means of raising awareness and
educating employers, colleagues and society in general?
Is there a need for a new professional role – co-ordinating access
to advice, support, information and representation for disabled
people facing barriers to employment?
References
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