Making headway

There are few services provided for people with brain injuries
with the result that too much pressure is placed on their carers.
Mike George talks to social worker Carol Needham about the
difficulties she had in obtaining support for her client and his
carer.

A million people a year attend hospital as a result of a head
injury, and some suffer a consequent injury to brain.

According to Headway, the national head injuries association,
brain injury is a large and growing problem, because more people
survive as hospital interventions improve. But as a House of
Commons health select committee report noted earlier this year,
brain injury is not recognised as a separate disability from other
neurological or mental health problems. And, in addition, there is
a lack of community support and care networks to provide ongoing
rehabilitative care.

These national problems found expression in Carol Needham’s work
with John Edwards (not his real name). Edwards, who is in his
twenties, attempted suicide a few years ago. As a result, he
received a brain injury. This affected part of his short and
long-term memory, and his intellectual abilities. He was in
hospital for a long time before being discharged back to the family
home, where his mother had agreed to become his main carer. She
gave up work, and received training from the hospital in the
therapies that would aid his rehabilitation.

Edwards’s discharge plan included support by a social worker
from a local psychiatric team, who, with his mother’s agreement,
arranged for home care services. But his mother provided the bulk
of his care and rehabilitation work. Needham, who was aware of the
efforts of the social worker from the psychiatric team, says that
Edwards’s mother was largely responsible for helping her son to
recover some memories and improve his intellectual
capabilities.

Despite having had short respite breaks, after about a year the
strain and exhaustion made his mother ill and she was hospitalised.
Needham’s colleague tried to find a suitable placement at short
notice, but nobody was available. Consequently Edwards was admitted
into an acute psychiatric ward, mainly for general care. The
situation was assessed and it was agreed that his mother could not
and should not attempt to return to her previous caring role, for
the sake of her future health – a conclusion with which she
agreed.

Edwards was then referred to Needham. She had been researching
schemes that might meet the needs of younger people with
dementia-type conditions. “I had been aware for some time about the
general lack of suitable resources for people like Edwards. And
Ihad been searching for models of care that avoid
institutionalisation, and promote independent living skills, while
keeping vulnerable people safe,”she says.

She was attracted to independent living schemes that provided
24-hour care in the community. She discussed this with Edwards’s
mother, who also felt it would be the right solution, provided that
her son was not too far away from the family. She still wanted to
carry on providing close care, and his sisters and father also
wanted to carry on supporting him. Also, Needham already knew that
Edwards wanted a home of his own.

She then searched for a suitable house, for care workers willing
to work with Edwards and for the money to pay for the arrangement.
She says she was under some pressure because the psychiatric
hospital was pressing for Edwards to be discharged, but explains
that his mother in particular took a very firm, and successful,
stand against this.

“Basically, we had to create something from scratch. After
carrying out a risk assessment, I contacted a voluntary
organisation, which had a care services contract with social
services, and found them willing to entertain the idea. I then
asked our housing authority, who were brilliant and came up very
quickly with a good property in a decent area, not far from the
family home. I was also putting together a funding package, which
was very hard work at times,” she adds.

Eventually, Needham did find the money. She says that social
services funded it up to the equivalent of the cost of a nursing
home placement, the Independent Living Fund added more, and
Edwards’s own benefits -Êincome support, housing benefit,
disabled living allowance and incapacity benefit – contributed. Her
main problem was persuading the health authority to provide
necessary top-up money, because they took the view that he did not
have health care needs. Their reticence was overcome after
Needham’s service manager, Edwards’s consultant, and his mother
lobbied the authority: however, they have retained a right to
review the situation.

He has now been in his new home for almost a year, and the
arrangement is working well, says Needham. He is kept safe, the
care workers assist in all aspects of his daily living, but also
encourage him wherever possible to look after himself and his
home.

Meanwhile, he has become a familiar and recognised member of his
community. This, Needham explains, is not only a human rights issue
but also a key self-esteem matter. And his mother and the staff
continue to try to improve his intellectual functioning and
memory.

“Not only do carers provide physical care, but they offer him
the fellowship which is essential for his well-being and inner
happiness.

“Social workers are familiar with the needs versus costs and
resources problem, and we’re often left feeling frustrated about
not really providing for people’s needs. But I think the political
climate is changing, that everyone’s human rights matter, and we
have an opportunity and duty to challenge conventional responses to
people’s care needs,” she says.

Case notes

Practitioner: Carol Needham.

Field: Approved social worker in a community mental health team.
n Location: Cumbria.

Client: John Edwards (not his real name) is in his twenties, and
a few years ago attempted suicide, resulting in brain injury. This
left him with amnesia and affected his intellectual abilities. He
requires assistance in all areas of daily living, he has grossly
impaired judgement and a poor attention span.

History: After a lengthy hospital stay he was discharged home,
with social work and psychiatric support. His mother gave up her
job and carried out a great deal of care and, successful,
rehabilitation work, but eventually became exhausted, and so ill
that she was hospitalised. While she wished to continue to provide
care, she was unable to carry on doing so as before. Edwards was
hospitalised while efforts were made to find him a suitable long
term placement, which proved very difficult.

Consequently, Needham worked closely with his mother to create
an independent living option, with 24-hour care support. As a
result of her considerable efforts suitable housing was found, and
an agency employed to provide round-the-clock care support; she
also arranged a funding package from various sources to support all
costs. A full risk assessment was carried out before he started
living in the house, which is located close to the family home.

Dilemma: Edwards, his mother, and Needham pinned their hopes on
this model of care, and there was no suitable fall-back option if
her plans had fallen through.

Risk factor: It is an expensive arrangement, and one or more
funding partners could decide to withdraw at any time.

Outcome: His physical condition, memory and intellectual
abilities have improved; though he continues to require constant
care and supervision.

Arguments for risk

If this arrangement had not been made, his mother could have
been forced to resume her 24-hour caring role, putting her at great
risk. Similarly, Edwards could have had an inappropriate placement,
because most residential facilities for people with dementia-like
problems are for older people, and that would have been extremely
detrimental to his well-being, and rehabilitation.

Such a placement would almost certainly have made contact
between him and his family much more difficult, not least because
of geographical factors, and created a danger that he would forget
his close family.

He has made intellectual and social progress while he has been
in his new home, and he has a good quality of life.

He continues to receive a great deal of support from his mother,
and other members of his family.

He is basically bright, and this arrangement has bolstered his
sense of self-identity, which was severely undermined by the brain
injury.

Needham continues to be an assertive advocate and effective
co-ordinator of services, and maintains a close relationship with
his mother. Edwards’s mother has her own social worker, who
provides her with support.

Arguments against risk

The package is expensive to maintain, and the health authority
in particular could decide to withdraw, which would put the
arrangement in jeopardy almost immediately.

Prior to his suicide attempt he had an undiagnosed mental health
problem; no one appears to know whether his rehabilitation is, or
could be, affected by this in the future or, indeed, whether he
still has this psychotic condition.

His personal relationships with care staff are an extremely
important element in the success or otherwise of this independent
living arrangement, so any staff changes could have an impact on
his progress.

Independent comment

Despite the high incidence and prevalence of brain injury, a
Headway survey of social services departments last year found that
75 per cent did not employ a specialist worker for clients with a
brain injury, writes Graham Nickson. Where a specialist worker was
claimed, closer investigation showed that half were in fact social
workers within physical disability teams with quite widespread
caseloads.

You can see echoes of this finding in the article, where social
worker Carol Needham discusses the problems she encountered.
Although Needham is a member of a community mental health team her
client, John Edwards, does not have a mental health problem
-Êhe has a brain injury. Although he may present with similar
problems, the cause and care treatment required are different. This
lack of a specialist worker means that Edwards may not receive an
accurate and full assessment of need, as required under the NHSand
Community Care Act 1990.

To address this problem Headway recommends the adoption of an
additional classification of user groups that includes people with
complex neurological problems.

Edwards does at least receive support. Too often people with
brain injuries are discharged from hospital care and sent home
without a support package in place.

Needham should also consider having him assessed by an
organisation such as Rehab UK who help brain injury survivors back
into appropriate employment. She should also contact the local
Headway group who can provide Edwards and his mother with support.
The local Headway group will be made up of people who have survived
a brain injury and their carers who will be able to share similar
experiences.

Finally, we hope that the announcement by the Department of
Health to develop a National Service Framework for Long Term Health
Conditions including brain injury will help to raise the standards
of service.

Graham Nickson is policy and campaigns manager, Headway.
For further information about Headway contact 0115 947
1917.