SUPPLEMENTARY MEMORANDUM BY ANGELA HICKS
(H 102A)
INTRODUCTION
Since my husband was critically injured in a
serious road traffic accident, sustaining multiple injuries and
a severe brain injury we have struggled to come to terms with
the wide ranging effects of the injury on our lives. This paper
outlines some of the difficulties and successes we have encountered
in our dealings with services to support the brain-injured.
HOSPITAL REHABILITATION
The General Hospital Ward
The first five months after the accident were
spent in Intensive Care and on general hospital wards. The strengths
and deficiencies of the early months of my husband's treatment
and care are detailed in my earlier paper "Hospitalisation
after Severe Head Injury: One Family's Experience".
The transfer from a general hospital ward to
a specialist neurological rehabilitation unit had been long awaited.
For some time I had been convinced that my husband had greater
comprehension and potential than was generally recognised and
acknowledged. Of course, I understand that medical professionals
must regularly be faced with distressed relatives struggling to
cope with what has happened, but there are two possibilities to
which they must open their minds:
— The close family may be building
up false hopes, seeing what they so desperately want to see rather
than accepting the reality that they want to deny.
— The close family may be right! Their
unique understanding and knowledge of their family member may
well give them greater insight and ability to recognise and understand
their responses.
I had struggled to prove what I believed with
written reports to senior staff and a detailed notebook of observations,
comments and activities which I kept by my husband's bedside for
staff and visitors. Anyone who took the time to read these reports
and journals could see that my observations were not the product
of an over hopeful and active imagination, but rational, precise
and accurate judgements on my husband's progress.
One key episode remains firmly etched in my
mind. I was sitting with my husband and discussing our concerns
with the speech therapist. She listened sympathetically as I explained
how many of the staff spoke to him in a patronising manner, underestimating
his intellect, "jollying" him along, giving him insufficient
time to listen to information, process it and attempt to formulate
a response. Under pressure to "perform" his standard
response to nursing staff was to lapse into a state of panic,
perseverate on the word "Yes" to everything and ultimately
to "play along" as if to make them go away! His frustration
was growing daily and his neurological improvement seemed to be
inversely matched with emotional decline. The speech therapist
was one of the few staff members who truly recognised the depth
of his understanding and the accuracy of my observations. Turning
to him, she asked how this patronising attitude made him feel.
Both of us were taken aback by the vehemence with which my gentle
husband, who was having such difficulty with expressive language
leaned forward, issued a stream of confused and passionate sounds
and then said "You scumbags" I know better than you
do!"
I was desperate for my husband to be transferred
to the specialist Regional Neurological Rehabilitation Unit (RNRU)
at Homerton Hospital, Hackney, having discussed referral with
the consultant in January. My contact with Headway, the Brain
Injury Association, and my own experience within the educational
field had convinced me that I needed to be my husband's advocate;
to be clear and decisive in trying to obtain the best possible
treatment for him. I also believed that time was of the essence,
since it seemed that the greatest progress is generally made in
the year post-injury.
In February I was delighted to hear that my
husband would be assessed by the RNRU on 10 March, but then devastated
when the Sister at Broomfield told me that if he were accepted
the waiting period could be eight months. I spent the next 24
hours on the telephone to every source of advice I could think
of, gathering as much information as I possibly could about rehabilitation
units and prioritisation. If he did have to wait eight months,
that would be 13 months post-injury—and my extensive reading
suggested that the first 6-12 months is the critical period in
which most progress is made. In desperation I rang the Unit direct
and was assured by the Senior Sister that the wait was more likely
to be six-eight weeks. I never did find out where the "eight
months" suggested originated—but how easily just one
comment can lead to severe emotional distress. In fact, my husband
was admitted to the RNRU on 28 March, two and a half weeks after
his assessment.
I believe that:
— General hospital wards do not have
sufficient time, training, expertise or resources to support patients
with severe brain injuries. This is not to imply criticism of
the nursing staff themselves, but to highlight the inevitable
lack of expertise in an undeniably complex field.
Specialised Brain Injury Rehabilitation Services
For us, Homerton represented a beacon of hope
in a sea of frustration and misunderstanding. The greatest danger
in building up hopes and expectations is that it is all too easy
for them to crumble in the face of reality. The RNRU Homerton
has an excellent reputation and I had only heard positive feedback
from past patients, relatives and professionals.
The transfer itself was difficult for both of
us. We had spent the past four months on the same ward, and, whatever
the deficiencies, you become used to routines and develop relationships
with familiar faces. I found it particularly difficult to leave
my husband at the Unit, knowing that he would now be 45 miles
away from home rather than 7. Once again, we had to start to build
relationships and initially both of us were somewhat traumatised
by the nature, severity and effects of some of the neurological
injuries on patients. It is a sobering thought to survey the dining
room at Homerton and reflect that not so long ago, each patient
was leading a normal, ordinary life.
The most noticeable difference was in the way
that patients were treated by almost all of the staff. It was
wonderful to be spoken to as though we were a normal couple—although
with the patience, care, time and insight that a brain-injured
person requires. It is as much an issue of tone as it is of content.
I believe it is to do with trying to be in touch with the person
that they were before the accident or injury, as also highlighted
by Dr Caroline McCagg, talking about brain injured patients at
the JFK Johnson Rehabilitation Institute, New Jersey:
"People respond to who he is now with the
awareness of who he was before. That's very important—that
you have the feeling of who they are, even if they can't convey
it with words or with actions"—(Dr Caroline McCagg,
—"Raising the Dead"; Channel 5; 2000)
Of course, as in any profession, the RNRU staff
are not without fault, but one of the strengths of the Unit is
that Senior Staff recognise this, welcome feedback and seek constantly
to improve. Other positive factors include:
— The specialised nature of the therapists,
who have particular training and insight in dealing with neurologically
damaged patients. My husband made particularly impressive physical
progress, far exceeding expectations. He entered the Unit in a
wheelchair, having taken a few steps with a walking frame. Five
months later he was able to walk half a mile and climb stairs
with supervision. He also made good progress in Occupational Therapy
and was regaining some basic independence in self-care needs.
This has a dramatic effect on self esteem and confidence.
— The range of professionals on site,
including a neurological consultant, doctors and nursing staff,
speech and language therapists, occupational therapists, neuro-physiotherapists,
social workers and a neuro-psychologist who also offers support
to relatives and children in the family
— The inclusive attitude towards close
relatives and recognition of the family's needs as well as those
of the patients. Both the patient and close family are actively
involved in setting realistic goals and making explicit their
hopes and expectations for achievement
— The accessibility of staff, therapists
and the consultant neurologist, Dr Greenwood, to answer questions
or discuss concerns
— Visits were made to our home by the
therapists with my husband, so that they could accurately ascertain
what modifications would need to be made whilst he was actually
in the home setting
I believe that:
— The field of brain injury is so very
complex and specialised that there needs to be a wide ranging
review of existing provision to ensure that every patient receives
the appropriate level of care, support and treatment that they
need and deserve at each stage of the recovery process
PREPARING FOR
REALITY
On 7 June 2000 a Case Review took place at Homerton
Hospital, with my husband, myself, RNRU staff and the Case Manager
from Social Services in attendance (who we met for the first time
that day). It was agreed to work towards a discharge date of 21
August 2000. Since my husband required 24 hour supervision and
I would be returning to work as a Headteacher full time for the
Autumn Term, he would need support from community carers between
8:00am and 5:30pm each weekday. The Case Manager said she would
cost this and present it to the relevant panel.
I spent the next few days engulfed by waves
of fear, panic and confusion. My husband and I are essentially
private people who have shared a strong, close and loving marriage.
Whilst we have many friends and acquaintances, our greatest enjoyment
and solace has been in one another's company. The thought of opening
our home to a succession of carers was almost intolerable. There
was no guarantee of continuity of care or even that carers would
have any detailed knowledge of brain injury. Having seen the traumatic
effect that lack of empathy and understanding had wrought on my
husband in a general hospital ward, I knew I could not expose
him (or me and our children) to this invasion of privacy within
the sanctity of our home.
In desperation, I turned to the manager at Headway
House, Colchester, to voice my all-consuming fears and concerns.
Her response was simple. "What about the Direct Payments
Scheme?" she asked. This was the first time anyone had mentioned
it to me and I asked what it was. She explained that it meant
that my husband's care package would be costed, but we would then
receive cash instead of directly provided services, enabling us
to organise our own care arrangements. At last I began to see
a window of hope and opportunity. If we were in control of what
was happening in our own home, then I could see that it might
succeed.
I contacted Social Services immediately and
asked why nobody had told me about the Direct Payments Scheme.
The response was astounding. They felt that my husband's care
package would be so extensive that it would be have been "too
complex" for us to organise. My indignation and stupefaction
was intense and brought forth a torrent of questions:
— How can anyone make an informed choice
if they do not know what the choices are?
— What right do other people have to
make the decision that this would be beyond our capability?
— On what basis was this decision made,
especially as this Case Review Meeting had been our first direct
contact with Social Services?
Having made my feelings abundantly clear, the
information regarding the Direct Payments Scheme duly arrived.
There was excellent support offered from the Independent Living
Advocacy (Essex), but, given my professional experience, I was
fortunate to require little assistance. We successfully advertised
for part time companions/personal assistants and received a good
response. Having interviewed six applicants, two were appointed.
I then put into place a comprehensive programme of training which
included arranging discussion/information sessions; providing
reading and video material; organising visits to Homerton and
Headway House and organising external training, for example, in
First Aid and Cognitive Rehabilitation. The outcome has been extremely
positive. We now have two excellent carers who are reliable, knowledgeable
and an invaluable support to both my husband and the family as
a whole.
It is interesting to note in the Essex Social
Services consultation document "Equal Lives" (September
2000), that they aim to support and develop the principles of
independent living through the availability and promotion of Direct
Payments. I whole-heartedly support that premise for those who
feel it is appropriate for their needs. I only hope that they
are beginning to tell people about it!
I fervently believe that:
— The Direct Payments Scheme gives
patients and families the possibility of regaining the greatest
possible degree of choice and control over their lives.
— This scheme should be prompted, explained
and made readily available to all those who want access to it
OBTAINING A
WHEELCHAIR
As my husband's August discharge date grew closer
I became increasingly worried that there was still no sign of
his wheelchair, despite the fact that it had been ordered by Broomfield
Hospital in January. The Occupational Therapist from Homerton
had made numerous enquiries, but found the person responsible
at Wheelchair Services evasive and unresponsive to her messages,
to the point of rudeness. Slowly, an incredible and farcical catalogue
of confusion began to unfold.
The Wheelchair Service claimed that they had
already delivered the wheelchair (with an extended left foot plate
and high risk seat cushion) to one of the wards at Broomfield
Hospital, a signature having been obtained for its receipt. Broomfield
Hospital denied this, saying that wheelchairs were always delivered
directly to the OT Department and would never be accepted by a
ward. The signature was not legible and could not be matched to
any their staff. There was not trace of the wheelchair and both
sides were denying responsibility. To add insult to injury, my
husband had never required a left plate extension anyway, as the
knee ossification had been on the right side! Broomfield had only
become aware that we had not received a wheelchair when I mentioned
it in a paper written and submitted to the hospital in June. Assumptions
had been made, but no procedures appeared to be in place to check
this!
The OT at Homerton was grateful when I offered
to contact the wheelchair service and Broomfield Hospital directly
myself—we hoped our combined voices might bring some influence
to bear. It transpired that this had now become a funding issue,
since the Wheelchair Services considered the order fulfilled and
were refusing to deliver another wheelchair unless Broomfield
paid for it. I made it clear that this was none of my concern.
All that concerned me was that my husband had the wheelchair that
had been ordered for him eight months previously. Within days,
a wheelchair arrived, albeit with the extension plate provided
for the wrong foot which the engineer was determined to fit because
that was what the delivery note said! Fortunately I managed to
persuade him otherwise, but only once I had provided him with
the telephone number of the OT at Homerton and he had been authorised
not to fit it by his office. Another crisis resolved—but
with an inordinate amount of unnecessary time and energy spent
by Occupational Therapists at both hospitals attempting to resolve
the problem.
It is indefensible that poor organisation, inadequate
procedures and concern over funding issues should:
— Cause potential distress and inconvenience
to patients.
— Consume an unacceptability high amount
of therapists' time, which could be more usefully spent working
with patients.
COMING HOME
In preparation for my husband's discharge we
began to draw up a programme for continued rehabilitation. I was
pleased when he was accepted for out-patient physiotherapy and
occupational therapy at Broomfield Hospital. Although the primary
difficulties had been with nursing staff rather than therapists,
it was gratifying to see a definite change in approach and attitude.
As the Occupational Therapist remarked, she was aware that I had
"strong views on what we should and shouldn't do" and
was keen to work in collaboration to set up an agreed programme
of support. I was delighted. I have never been aggressive or confrontational
in my approach, but I have been firm in my beliefs and prepared
to make them public for the sake of my husband and others like
him.
It transpired that the level of communication
between the various hospitals and my husband's G.P. had been derisory
and I was her primary (and sometimes only) source of information.
Much clearer procedures for establishing communication
with the G.P. need to be in place, particularly in cases of such
severe injury where the patient and family are likely to need
ongoing and extensive support.
Having provided extensive support for me and
my family for ten months, Headway finally met my husband. As part
of my husband's rehabilitation programme, it was agreed that he
would attend Headway House at Colchester for two days each week,
with funding and transport provided by Social Services.
SOCIAL SERVICES
TRANSPORT
On my husband's sixth visit to Headway we had
a very difficult day when he was collected too early from Headway
House and taken back to what would normally have been an empty
house. Fortunately, one of our carers had arrived early and was
home to meet him, but he was upset, agitated and confused because
he had also missed his lunch. Having spoken at length with both
Social Services and Headway House, I was assured this would not
be allowed to happen again.
Only a fortnight later, on his tenth visit to
Headway, the transport failed to arrive to collect my husband
from Colchester at 4.00pm. Nobody contacted Headway to inform
them and I was told that the response when they contacted Social
Services to ascertain how they could contact the driver and find
out what was happening was "I haven't the faintest idea".
I was appalled.
My husband had been due to arrive home by 4.30pm.
He eventually arrived home at 7.00pm, having been collected by
one of his carers. He was distressed and exhausted, to the extent
that he was unable to attend Headway at all on the following day.
I was also very upset as I was trying to contend with a demanding
day at work, a sick child at home and complex evening care as
I had to return to work for essential training that I had organised
for that evening. Having had to endure untold stress and emotional
strain during the past year, situations like this add to an almost
intolerable load. I also had to pay the carer for additional hours
and mileage costs, which is a secondary, but nonetheless, important
issue.
I was incensed by this inadequate service. As
a result of his brain injury, my husband requires consistency
and structure to his day. He is easily confused and becomes agitated
and distressed when arrangements do not go according to plan.
I had put a huge amount of time, care and effort into planning
a detailed and professional care package for him via the Direct
Payments Scheme. The only part of this for which Social Services
had direct responsibility were the journeys between our home and
Colchester, Headway. It is the only part of his care which has
failed.
The experience of brain injury has a devastating
effect upon a family, particularly where young children are involved.
As a family we have coped because of the strong bonds of faith,
hope and love that we share. It is only possible for us to attempt
to build a new kind of normality if we are able to trust the people
that are helping and supporting us. I had lost all faith and trust
in the transport service and was not prepared to place my family
in such a vulnerable position again. I decided that I could no
longer allow my husband to be transported by Social Services.
I can only assume that my letter was received as no further transport
has arrived since my complaint was made. However, I have received
no acknowledgement, explanation or apology since my complaint
was sent almost three months ago.
I am in the fortunate position of being able
to find sufficient money to fund the transport costs for my husband.
What grieves me particularly is that there are undoubtedly many
who are forced to accept a deficient service because they simply
have no alternative.
— Transport Services need to be reliable
because people depend upon them.
— I am appalled that customer care
skills can be so poor in a department that is supposed to be providing
a "social service".
CONCLUSION
Fourteen months have now passed since that dreadful
day in October 1999. We continue to climb this dramatic and emotional
learning curve, knowing that, in terms of brain injury, these
are still "early days". We count ourselves among the
more fortunate families, since my husband has made considerable
progress and there is quality to our life—albeit a very
different life to the one we had before. There are also many difficulties
yet to be faced, challenges to be overcome and a gradual dawning
of acceptance of this new life.
I am absolutely certain that my husband has
made this progress as a result of three main factors:
— His own inner determination and strength
— The continued and unshakeable love,
support and encouragement of his family and friends
— The determination of his wife to
gain access to appropriate brain injury rehabilitation services
and out-patient provision, supported with information and advice
from Headway, the brain injury organisation
My great concern is that there are many unfortunate
brain-injured patients who do not have such an advocate. There
are many families who understandably find the intolerable stresses
that brain injury places upon them just too much to bear.
As medical knowledge and technology has advanced
an increasing number of people with severe head injuries are surviving.
There needs to be a corresponding increase in the provision of
staff and specialised rehabilitation facilities so that patients
can receive appropriate treatment for their stage of recovery.
As Headway so eloquently puts it: "A life
worth saving must be a life worth living"
January 2001
| 
