MEMORANDUM BY ANGELA HICKS (H102)
HOSPITALISATION AFTER SEVERE HEAD INJURY:
ONE FAMILY'S EXPERIENCE
On 21 October 1999, our lives changed irrevocably,
when my husband was critically injured in a serious road traffic
accident. At that time I knew very little about severe head injury.
We began a long and difficult journey, as we started the struggle
to come to terms with the injury and its effects. This paper chronicles
the strengths and deficiencies of the early months of my husband's
treatment and care. It is written in the hope that it may in some
way influence and improve the experiences of those who are unfortunate
enough to follow in our footsteps.
Initial Injury List
— Left frontal haemorrhage and right
contusion, requiring craniotomy and evacuation of left frontal
haematoma.
— Multiple fractures to the ribs, right
scapula, clavicle, humerus and acetabulum; fractured and displaced
pelvis.
— Laparotomy and cardiac arrest.
— Pneumothorax, right basal infection
and Acute Respiratory Distress Syndrome (ARDS) subsequent to pulmonary
contusion and massive blood transfusion.
In-Patient History
21.10.99—Taken to Accident and Emergency,
Broomfield Hospital and admitted to ITU.
23.10.99—Transferred to Oldchurch Hospital
for neurosurgery and admitted to ICU.
11.11.99—Transferred to B2, Neurological
ICU, at Oldchurch Hospital.
16.11.99—Transferred to ITU, Broomfield
Hospital.
17.11.99—Transferred to B23, Notley Ward
(Orthopaedic), Broomfield Hospital.
29.11.99—Transferred to B20, Custerson
Ward (Rehabilitation), Broomfield Hospital.
28.03.00—Transferred to Regional Neurological
Rehabilitation Unit, Homerton Hospital.
Acute Care
There is no doubt that the acute care and treatment
that my husband received at both Broomfield and Oldchurch hospitals
was of a very high quality. The skill, care and dedication of
the full range of staff undoubtedly saved my husband's life and
gave him the chance to make the best level of recovery possible.
At Broomfield Intensive Care Unit my experience as a relative
was also very positive and I felt involved, well informed and
supported. Unfortunately the care of relatives at Oldchurch ITU
was far less satisfactory, an issue that I raised with the senior
management at the time via a short paper entitled "The Insignificant
Other?" (Appendix 1).
Within intensive care I felt that:
— Acute medical care was generally
of a high standard.
— More consideration should be given
to the provision of information and support to relatives.
As seems to be the case with many brain-injured
patients, it was our experience subsequent to the initial acute
treatment phase that began to cause me considerable concern.
Acute Rehabilitation
On his return to Broomfield, my husband was
transferred from ITU to an orthopaedic ward. It was soon clear
that there would be no orthopaedic intervention and yet he had
to remain on the ward for 12 days awaiting transfer to a ward
that was considered to be more appropriate. Few of the staff had
experience in dealing with patients with a tracheostomy in situ
or knowledge of management of patients with brain injury. This
lack of knowledge and understanding extended to the handling of
relatives. I was told by one nurse "Of course this may be
it—as good as he gets". Whilst I was actively seeking
information and prognosis, I was traumatised by comments such
as this, which were made with inadequate background knowledge
and lack of sensitivity.
My husband was then transferred to B20, which
is intended to meet patients' rehabilitation needs. There is a
range of professional support for patients, including physiotherapy,
occupational therapy and speech therapy, but there is no specialist
clinical psychologist. The consultant recognises the lack of specialist
provision, but believes that staff have developed some skills
in dealing with brain-injured patients. She agrees that resources
are limited and the staff-patient ratio is not as high as in a
dedicated rehabilitation centre. Within Physiotherapy and Hydrotherapy
my husband made steady, positive progress and my involvement was
actively welcomed and encouraged.
Staffing Issues
Resourcing inadequacies soon became clear. Although
the ward is loosely referred to as a "rehabilitation"
ward, there was obviously a very high proportion of medical cases.
It was hard to reconcile the term "rehabilitation" with
the death rate on the ward! A number of the nursing staff expressed
their frustration at being unable to give patients who required
rehabilitation the time and opportunities that they required,
for example, encouraging independence in self-care needs. On a
number of occasions, long-serving members of staff said that they
felt they have been able to give patients much more time and appropriate
support when the rehabilitation facilities were at Black Notley,
despite the superior facilities at Broomfield.
Several less experienced members of the nursing
staff professed interest in brain injury, recognising and regretting
their limited knowledge and understanding. It appeared to me that
training opportunities were very limited, particularly for nursing
auxiliaries, who have so much responsibility for the day-to-day
care and handling of patients. By the time that my husband was
transferred, I found that I was becoming one source of information
for them, because of my growing and passionate interest in the
effects of brain injury!
Dealing with a brain-injured patient
One of the most frustrating aspects of my husband's
care during this period, was the assumption that he had very limited
or non-comprehension. This was exacerbated by his communication
difficulties, which became significantly worse when he felt tired,
in pain, pressurised or stressed. He was regularly spoken to in
a patronising manner by staff who failed to appreciate that his
difficulties in expressing himself did not necessarily mean that
he lacked understanding.
My husband and I have shared an exceptionally
strong and close relationship for over twenty years, and I know
every nuance of his behaviour and responses. I also have considerable
professional skills, expertise and objectivity that I have gained
in my career as a teacher, Special Educational Needs Co-ordinator
and Headteacher, which enabled me to make accurate observations
and judgements about his condition. I recognise that my emotional
state was intensified during this traumatic period, but I frequently
felt that my judgement was considered to be unimportant and misguided—that
I was a distressed wife who was seeing what she wanted to see.
Consequently, I was driven to write two factual, objective accounts
to the consultant giving concrete examples to substantiate my
conclusions.
It seemed to me that the validity of my observations
was far outweighed by my husband's "performance" on
the weekly ward round. It is hardly surprising that this ritual
would intimidate a patient who has suffered a severe brain injury—I
think that it would intimidate most people! Given that his injury
resulted in significant cognitive impairment and expressive language
difficulties, I cannot see that firing questions at him in front
of a large group of people is an effective way to test his memory
and comprehension, although it certainly highlighted his information
processing problems. Even one member of staff referred to it as
"surviving the inquisition". Two days after one particular
ward round my husband still became tearful and distressed about
it—his perception and description was that he had undergone
"a bollocking from the doctor".
The effect on my husband's attempts to communicate
was profound. On numerous occasions I saw him unable to attract
the attention of staff—at that time his difficulties in
initiating and sequencing actions meant that he was unable to
cope with the nurse call buzzer. All too often, hard-pressed nurses
simply didn't have time to notice or respond to his attempts to
communicate his needs. Many of the nurses lacked basic knowledge
and understanding about dealing with communication difficulties,
giving him insufficient time to process and respond to information.
As a result he tended to panic, which exacerbated his tendency
to perseverate and lapse into echolalia. Finally, he just gave
up trying. His emotional state began to deteriorate and he started
to withdraw into himself.
The starkest illustration of the misjudgement
at Broomfield of his level of understanding was illustrated when
we attended The RNRU at Homerton for an initial assessment. I
had explained to my husband the importance of this interview.
He was assessed by a doctor who spoke to him calmly, clearly and
like a rational human being. It had been so long since we had
been treated as a "normal" couple that it felt totally
alien! His response was remarkable—but only proved publicly
what I had known for some months. No one could doubt the level
of comprehension of a man who could:
— Say "I'm feeling very positive".
— Name the day, year, his location
and date of birth.
— Count backwards from 30 without hesitation.
— Respond to the request to give words
beginning with the letter "s" by saying: "Saint—but
I'm not one!"
— Name a range of everyday items such
as "watch", "lapel", "lace" and
"ring".
— Carry out the instructions given
in the physical examination and explain that his fingers were
"not flexible on the right hand".
I watched the growing amazement of the nursing
auxiliary who accompanied us from Broomfield. As we left the room
she turned to my husband and apologised profusely, saying:
"I'm so sorry—I had no idea! I promise
I'll try to give you more time now."
He had been on the ward at Broomfield for almost
four months—the doctor at Homerton had elicited these positive
responses within forty minutes!
A further example at Broomfield occurred during
the two weeks that his urinary catheter was removed. During this
time he did not have a single "accident" during the
many hours that I was with him on the ward. However, I often arrived
at the hospital and found him sitting in wet clothes and he had
frequent "accidents" when I was not present. I was convinced
that this was as much a question of communication and nursing
strategy than continence, but felt I had no choice but to allow
him to be re-catheterised given the unsatisfactory management
of the problem. It is interesting to note that the catheter was
removed within 24 hours of arriving at the Regional Neurological
Rehabilitation Unit at Homerton. Staff carried out regular observations
to try and establish a pattern and implemented an effective bladder
retraining programme to achieve daytime continence.
I believe that my husband's state of mind at
Broomfield was principally preserved by two factors: my daily
presence at the hospital and the relationship with his speech
therapist, Teresa Eade. She recognised that there were far greater
depths of comprehension than might initially be obvious. When
I remarked one day that she was very good, my husband's response
was "Teresa's not good. She's a bloody godsend". She
clearly recognised the value of working with patients with disability
as partners and this evident in her practice, professional and
emotional support.
Dealing with Relatives
The consultant and staff repeatedly tried to
persuade me to spend less time at the hospital, showing concern
for my emotional well-being. However, one of my major concerns
was that for the vast majority of the day, my husband would sit
in his chair or lie on his bed with minimal stimulation unless
I was there to provide it. The response from the consultant was
that if I were not there then they would do more! I have a number
of difficulties in accepting this argument:
— Firstly, having spent months observing
the workload and levels of pressure on staff, I wondered from
where this "extra time" would originate?
— Secondly, during the time that the
catheter was removed there were repeated occasions when I arrived
at the hospital to find him sitting in wet clothes and, in one
instance, unwashed, shaved or dressed at two o'clock in the afternoon.
This did not inspire confidence that my presence was unnecessary!
— Thirdly, if additional therapy sessions
were deemed appropriate these should have been occurring regardless,
whether I was present or not
— Finally, even given my ongoing and
unconditional love, support and time, my husband clearly became
very emotionally vulnerable towards the end of his stay at Broomfield.
I have no doubt that he would have developed severe emotional
and behavioural problems without my concentrated support and involvement.
I accept that staff need to be cautious in discussing
likely prognosis with relatives, since every brain injury is unique
and the pattern of progress is impossible to predict with any
certainty. However, I found the consultant's tone particularly
negative and discouraging. After each "official" encounter
with the professionals (at formal meetings or case review), I
felt extreme anguish and despair, doubting my own ability to recognise
my husband's responses and progress. It took several days and
considerable support from my family, friends and Headway to regain
my positive but realistic outlook. Despite the extensive experience
and self-confidence I have gained as an educational professional,
I found these meetings extremely intimidating and traumatising.
How much more difficult it must be for those who lack such experience.
I found immense comfort, solace and vindication of my beliefs
in the power and importance of the family in the article "Faith,
hope and love" written by Frederick R Linge, a clinical psychologist,
who suffered a severe head injury himself. (Appendix 2)
Family Support
One of my major concerns was the lack of involvement
of any support group for brain-injured patients and their families
within the hospital. Prior to my husband's accident I would never
have foreseen that I would contact any form of helpline or support
association, as I have always been very strong, determined and
independent. However, within a week of the accident I recognised
my need for information, advice and support and sought this from
Headway, the National Brain Injury Association. Their response
has been outstanding—both at a national and local level.
As a family we have personally benefited from:
— Their comprehensive range of leaflets,
booklets, recommended further reading.
— A telephone helpline giving information,
advice and emotional support.
— Friendly and helpful staff at "Headway
House", Colchester.
— A professional counsellor who understands
the effects and implications of brain injury.
— An art therapy workshop for children
who have a head-injured parent or sibling.
— Advice about solicitors and seeking
compensation.
— Support groups for head-injured people,
their families and carers.
— Access to training about brain injury
provided by professional rehabilitation staff.
I am well aware that Headway (Essex) has sought
greater involvement at Broomfield Hospital, but this has not been
accepted. I fail to understand why their support has not been
embraced. Their aim is simply to provide quality support for people
with head injury, their families and carers. I firmly believe
that professionals who work in specific areas of medicine do not
necessarily fully understand the broad and long-term effects of
brain injury.
The staff as Headway House have a breadth of
experience in dealing with the effects of a head injury on the
whole family unit. They know the reality of life beyond discharge
from hospital, and if family relationships are going to survive
the potentially devastating effect of brain injury, they need
every source of help that is available. If one Essex Hospital
can notify Headway of any head injuries admitted and liaise closely
with them, why can't the others? Hospital staff simply don't have
the time—and in some cases, the knowledge and understanding—to
provide the support that families may need.
Within the general hospital wards I felt that:
— Staff have inadequate knowledge and
under-developed skills in dealing with brain-injured patients.
— There is a tendency to focus on medical
and physical aspects of rehabilitation.
— Greater emphasis needs to be placed
upon dealing with cognitive, emotional and behavioural deficits.
— Relatives require higher levels of
information and support.
— Headway's knowledge, services and
expertise should be recognised, valued and encouraged.
Additional Issues
My husband was due for his regular six-monthly
dental "check-up" whilst he was an in-patient at Broomfield.
I was amazed that there is no hospital-based provision for dental
care of long-term patients and was very grateful that a visit
to a dentist was arranged. However, this entailed a round trip
of approximately 20 miles, an ambulance and nurse escort! To add
insult to injury, the dentist did not carry out the required treatment
and recommended a scale and polish on discharge (which was likely
to be at least 6 months later!). Since transferring to Homerton,
he has started a programme of extensive gum and hygiene treatment—although,
once again this has had to be arranged with a local dentist rather
than within the hospital itself.
Home visits were made by Occupational Therapists
from both Broomfield and Homerton Hospitals. There are some interesting
parallels to be drawn:
— A home visit was undertaken by the
OT from Broomfield in isolation, whereas the OT from Homerton
accompanied my husband on a home visit within 2 weeks of transfer
to the Unit, in order to carry out an effective assessment of
his abilities and needs within the home setting.
— The OT from Homerton was astounded
that my husband had been allowed home from Broomfield without
basic equipment such as a commode being allocated. She assessed
our ground floor cloakroom as being totally unsuitable for use,
since she considered that attempting to transfer my husband to
and from the toilet would pose substantial risk to both of us.
At this point, I had already managed to cope with home visits
of up to 8 hours for a period of 12 weeks—fortunately without
mishap. A commode arrived within 24 hours of her referral.
— Broomfield Hospital ordered a wheelchair
for my husband in January. Five months later it has still not
been forthcoming.
CONCLUSION
During the past seven months I have climbed
a dramatic and emotional learning curve. The challenge will continue
as we confront the demands placed on a family affected by head
injury. We are among the more fortunate families, since my husband
was admitted to the Regional Neurological Rehabilitation Unit
at Homerton Hospital a little more than five months after his
injury. In two months he has made dramatic progress—emotionally,
physically and cognitively. It would be tempting to argue that
the reason he has made this progress is primarily due to his "readiness"
after injury. However, I would refute this given the positive
progress that appears to be made in patients with widely varying
levels of neurological functioning within the unit.
I have experienced first hand the difference
that can be made by dedicated and specialist staff who have appropriate
skills, attitudes, knowledge and understanding. The staff in the
RNRU at Homerton work in challenging circumstances, but the atmosphere
within the Unit is overwhelmingly positive, good-humoured and
supportive.
I fervently believe that this is the quality
of provision that head-injured patients need and deserve at an
early stage of the recovery process.
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