Too ashamed to seek help

CASE STUDY

The names of the service user and her family have been
changed.

Situation: Noor Jehan is a 57-year-old single
Bangladeshi woman who lives with her frail father, Mannaf, 83, who
has dementia and mobility difficulties. An only daughter, Noor
feels it is her duty to care for her father even though she finds
this very difficult as she has a visual impairment herself.  

Problem: Noor has never registered herself
blind nor sought any help from the RNIB or social services. Her
eyesight began deteriorating 30 years ago but her father, who sold
his business when he reached 65, stopped her going to see doctors
or specialists because he felt her condition was a social stigma –
blindness can often invoke cultural issues. Because of her failing
sight, Noor, who had worked exclusively for her father, has
remained at home for the past 20 years. Noor’s eyesight is now very
poor and her father’s health has deteriorated rapidly over the past
year. Also, her father stopped her speaking English in the house,
and they only shopped where people spoke Bangla. An isolated Noor
now lacks communication and language skills. She is particularly
worried about missing prayer times – which happens a lot without
her father to prompt her. Noor and Mannaf’s circumstances came to
light only when a neighbour’s new partner – who happened to be
Bangladeshi and a social worker – met them by chance.

Panel Responses

Julie Heath

In the initial contact with Noor it is essential to gain her
confidence by employing the skills of an independent interpreter.
It could be tempting to use the social worker neighbour in this
role, but this may be a mistake given that Noor might feel
uncomfortable with a neighbour having access to confidential
information. It may also be inappropriate to use a family member in
this role. Family dynamics would not have been established at this
stage, so Noor might not feel at ease during the assessment.

It would also be essential to explore what Noor wished to achieve
from any intervention, while being sensitive to her cultural and
religious needs. Similarly, Noor’s continued role as carer for her
father needs to be assessed.

Any intervention strategy should take into consideration the amount
of care that Noor wishes to provide herself and areas where she may
need practical or technical support. It would be possible for
domiciliary services to provide culturally appropriate personal and
practical support for Mannaf to a level which still allowed Noor to
maintain a significant role in her father’s care.

The community mental health team could provide support for Mannaf
by regular visits from a community psychiatric nurse. The CPN could
keep in touch with Mannaf’s GP and arrange hospital assessments and
respite care, which would allow Noor a break from her role as
carer. Links could be made with local Asian voluntary groups,
including social groups, which Mannaf could access, and carers
groups, which could be a source of support for Noor.

Noor may also be interested in receiving support to make links with
local dementia groups and with the Alzheimer’s Society to gain more
understanding of her father’s condition. Given that Mannaf has
mobility difficulties, it may be necessary to refer him for an
assessment by a community occupational therapist to provide
mobility equipment and to safeguard staff who may need to employ
moving and handling techniques to provide his personal care. Any
cultural barriers to using these services would need to be
discussed with Noor and with Mannaf.

Stuart Drabble

Noor would need to be assessed in her own right for her sensory,
social, financial and communication needs. It would be essential to
address her sensory needs, and advice and information should be
given on sight tests, registration, low-vision aids assessment and
treatment if appropriate. It could well be the case that her sight
impairment could be corrected if it were a condition such as
cataracts. Practical support may be necessary to allow Noor to
attend appointments and go on visits.

There are many visual impairment technical aids to improve Noor’s
daily living skills. These might include easy-to-see clocks and
watches, adapted or specialist lighting, large-button telephones,
writing and signature guides, screen readers and markings to make
it easier to operate the controls on cookers, washing machines and
microwaves. To increase her independence with cooking, Noor could
use liquid level indicators, boil alert devices and rehabilitation
instruction.

Following referral, a trained mobility worker could accompany Noor
around local routes to help her gain the skills and confidence to
use local shops and so on unaccompanied. Guide cane skills would be
offered if required and if culturally appropriate. If Noor wishes,
she could use direct payments to employ either an agency worker or
a personal assistant to act as her guide and helper. This may work
well for Noor as she could select a worker who was appropriate in
gender, language and culture for her needs. This may enable her to
attend prayers and social groups such as local Asian women’s
groups.

It would also be important to meet Noor’s communication needs. It
may be that she would want to attend English classes and may need
the support of her personal assistant to do this. She may choose to
use talking books and newspaper services. The RNIB and the national
talking newspaper organisations have tapes and compact discs
recorded in many Asian languages. She may need information about
Asian TV broadcasts and radio. If registered as blind or partially
sighted, Noor would be entitled to a radio cassette and CD player
through Wireless for the Blind.

It is also likely that Noor will not be claiming all, if any, of
the benefits that she is entitled to. A full welfare rights
assessment should also take place.

User View

After a lifetime of self-reliance, this family is in desperate
need of help, writes Simon Heng. The risks to Noor’s and Mannaf’s
immediate safety and (in the longer term) health are obvious to
outsiders. In isolating themselves from informal sources of support
among the community and from the statutory services, they must have
impressed the outside world with their show of independence for a
long time. Everyone, regardless of culture, gets a certain amount
of their self-respect from their ability to be self-reliant.  
Perhaps the greatest immediate problem now facing the community
services is to help Noor and Mannaf to come to terms with their
respective disabilities, infirmities and social isolation and
enable them to accept the help they need without feeling ashamed
and stigmatised. Given that Mannaf is beginning to show signs of
dementia, and that Noor lacks language skills, the task for the
professionals is compounded.   However, their joint need for
religious observance may well work in favour of those seeking to
support Noor and Mannaf as this may be the key to helping them
accept other forms of assistance. If it were possible to visit this
family and interview them in their first language, by people who
understand Bangladeshi culture, then this would perhaps establish a
picture of what they see as their needs.   The neighbour’s partner
(who has the same cultural background and also works for social
services) might be persuaded to be involved at this early stage.
However, it’s possible that Noor and Mannaf would find this kind of
approach difficult, even offensive, compounding their sense of
stigma.   Involving Bangladeshi members of the local community,
particularly spiritual leaders, would be a good step. They have
shopped in local Bangla shops, so they must know the local
community and be known among them, at least superficially. These
people may even be able to suggest or offer help. If not, they may
be able to establish a common ground on which the community
services can build.   It’s quite possible that Mannaf and Noor may
already be feeling that they are unable to cope any longer. Perhaps
this is why Noor mentioned some of the difficulties to their
neighbour. They might find it a relief to be able to admit their
difficulties and to finally accept the help they so desperately
need, on their own terms.   Simon Heng is a disabled service
user.