MEMORANDUM BY HEADWAY (H29)
2. Headwaythe brain injury association
5. Analysis of enquirers
6. Analysis of enquiries by time interval
7. Themes of rehabilitation
1 History of Headwaythe brain injury
2 Epidemiology of head injury
3 Headway Information Enquiry Service statistics
Although there is currently a lack of sound
up-to-date epidemiological data on the UK wide incidence of head
injuries, (or traumatic brain injury, as it is also termed), it
can be estimated from 1991 figures that approximately 186,000
people each year are admitted to hospital with a diagnosis of
However, the experience of Headway is that these
figures may underestimate the true extent of the incidence of
head injury, which affects not only the individual head injury
survivor, but also their family, friends and work colleagues.
This submission is based on an analysis of a
representative sample of enquiries on issues related to rehabilitation,
received by the information enquiry service at Headway central
Headway believes this evidence indicates serious
deficiencies in the provision of rehabilitation to head injury
survivors, and that this is causing unnecessary distress and hardship
to head injury survivors, their families and carers.
From this analysis of the experiences of people
directly affected by head injuries, Headway has drawn up a series
of recommendations, which it hopes the Government will adopt.
Arising from this submission, Headway recommends
the Department of Health should immediately
implement the effective gathering of epidemiological data on the
incidence of traumatic brain injury in the UK;
a system should be implementation
to make better information available to non-expert health professionals
on the long term consequences of traumatic brain injury, and the
services available to support their clients with head injuries,
whether in the acute, post-acute, rehabilitation or community
head injury survivors and carers
should have better access to up-to-date, accurate and timely information
at the point in time at which it is relevant;
head injury survivors and their carers
should have access to the full range of appropriate rehabilitation
services, which should not be restricted by reason of age;
in keeping with the commitment of
the New NHS to patient-centred services, there should be effective
monitoring of head injury survivors in the community to ensure
continuity of and access to appropriate care and rehabilitation;
access to appropriate and effective
rehabilitation should be facilitated for head injury survivors
as and when necessary for the well being of themselves and their
carers, for the rest of their lives;
in the interests of supporting head
injury survivors in employment, a commitment should be made to
ensure GPs and employers are correctly informed on the effects
of mild head injury and how to effectively support employees with
head injuries in the workplace.
1.1 This document forms part of the submission
to the Health Select Committee by Headwaythe brain injury
association. It should be read in conjunction with the accompanying
appendices; the written submissions of Headway's local groups
and branches; and the oral evidence of Kevin Curley, Chief Executive
1.2 Headway's objective is to highlight
the rehabilitation needs of head injury survivors. This is achieved
in this document by reference to primary data extracted from routine
monitoring information collected from enquirers to Headway's national
information enquiry service during the period April to June 2000.
1.3 This data will first be contextualised
by reference to:
the history of Headwaythe
brain injury association, its membership and objectives as a national
the epidemiology of head injury;
background information on Headway's
national information enquiry service.
1.4 A brief explanation of the methodology
used will be followed by the presentation and commentary on the
1.5 Appendices are included for the information
of Committee members who might wish to pursue in greater detail
issues raised the main body of the text.
1.6 The term "head injury" as
favoured by the Health Select Committee in the title of this Inquiry
is synonymous with the term "traumatic brain injury",
a designation which is the preferred term amongst clinicians and
those working in the neurosciences. It will sometimes be necessary
for purposes of clarification (such as in reference to Headwaythe
brain injury association) to use the term "traumatic brain
injury" in preference to "head injury".
1.7 Reference is made in this document to
head injury of varying severity. The Glasgow Coma Scale is one
of the diagnostic tools used by clinicians to measure the severity
of head injury. The person with head injuries is assigned a numerical
score to measure degrees of unconsciousness. The minimum score,
indicating a degree of severe injury is 3, and the maximum score,
indicating a lesser injury is 15. Mild head injury on this scale,
for example, is usually scored at 13-15.
1.8 All identities in the case studies appearing
throughout this document have been changed to preserve the anonymity
of the individuals concerned.
1.9 Case study material illustrating this
document, and which is drawn directly from the enquiry monitoring
forms making up the data sample, is presented in italics for ease
2.1 Headwaythe brain injury association
is a major national neurological charity. It is the only national
charity whose mission is to offer information, advice, support
and services to traumatic brain injury survivors, their families
and carers. It also supports the concerned professionals from
a range of disciplines, who have clients or patients with a head
2.2 Headway was founded in 1979 by a group
of carers, the partners and parents of head injury survivors,
for the purposes of mutual support and encouragement. At this
time, there was a lesser understanding of the long-term difficulties
of head injuries, and nothing in the way of information provision
or practical support for brain injury survivors either in the
post-acute hospital setting, or in the community.
2.3 Twenty-one years later, Headway has
a central office in Nottingham and over 112 local groups and branches
throughout the UK, 57 of which are providing day care and therapeutic
activities through Headway House centres. Headway is a member-led
organisation which elects a Board of Trustees who determine its
guiding strategy and policies.
2.4 The national information enquiry service
is provided from the organisation's central office in Nottingham.
Due to increased demand, this service will be extended later in
2.5 Day care provision in Headway Houses
may be supported by local statutory services through service level
agreements. However, the national charity is 98 per cent dependent
on voluntary donations for its funding.
2.6 For fuller background information on
Headway, please refer to Appendix 1.
2.7 The Headway national information enquiry
service operates during office hours, Monday to Friday, 9.00am
to 5.00pm. The running of this service is the responsibility of
the Information Services Team at Headway central office in Nottingham.
2.8 Appendix 3 gives a comparison of monthly
totals of enquiries received by the service during the period
1997-2000. From this it may be seen that the number of enquiries
continues to rise year on year. In the year 2000, the rise represents
a 28 per cent increase on the previous year's figures.
2.9 These enquiries are almost entirely
from individuals contacting Headway for the first time. Therefore
they are particularly valuable as indicators of levels of awareness
about head injury existing in the general public, and highlight
the level of access to information and services which is available
to survivors and their families in the acute, post-acute phases,
and in the community.
2.10 Information is taken from enquirers
primarily for the purpose of answering the enquiry. It also provides
monitoring data of a detailed nature, which is anonymous.
3.1 Before examining the unique data obtained
from Headway sources and analysed in this document, it is essential
to consider the epidemiology of head injury.
3.2 Statistics on the UK-wide incidence
of head injury are dated, and therefore potentially inaccurate
and open to misinterpretation. For example, a recent Written Answer
to a Parliamentary Question on support given to survivors of acquired
brain injury, erroneously quoted statistics which referred only
to traumatic brain injury (head injury).
The designation "acquired brain injury" includes not
only traumatic brain injury (head injury), but also other brain
injuries and progressive neurological conditions, such as stroke.
3.3 Neither are the statistics of recent
origin. Current statistics on the incidence of head injury, are,
in fact, based on a 1991 study by Tom McMillan and Richard Greenwood,
respected experts in the neurosciences.
It is these figures which are the origin of the statistics quoted
in the 1999 Royal College of Surgeons' report into the management
of head injuries.
3.4 These figures suggest that out of the
one million people who present themselves at hospitals this year,
the majority (84 per cent) will have sustained a mild head injury,
11 per cent will have sustained a moderate head injury, and five
per cent of admitted cases will be severe (Appendix 2).
3.5 Assuming a UK population of 60 million
for illustrative purposes, statistics suggest that between 162,000-186,000
people are admitted to hospital each year with some diagnosis
of head injury.
3.6 Most studies carried out since 1991
have used a local, not global sample. The most recent of these,
that of Thornhill et al. in Glasgow,
not only estimate a higher incidence of head injury in the populationnearly
4.5 times higher, but also reflected a higher level of unrecognised
problems on discharge than had previously been supposed.
3.7 The reason for this discrepancy may
lie in the way statistics on head injury have been obtained. Firstly,
statistical data has been based solely on hospital admission.
It is well known that many people experiencing a mild head injury
will not visit either an A & E department, or a GP's surgery.
3.8 Hospital Episode Statistics for head
injury are based on the relevant 10 codes of the International
Classification of Diseases. However, research in Wales suggests
that less than 50 per cent of all head injury admissions can be
detected by reliance on this method.
3.9 A full discussion of epidemiology can
be found in Appendix 2.
3.10 Should reliable data be collected,
Headway believes it will undoubtedly indicate far higher numbers
of people with head injury in the population than is generally
assumed. Headway would therefore argue for appropriate resources
to be made available to support people with head injuries and
their carers, and the professionals who work with them.
3.11 Headway believes it is imperative that
the Department of Health takes the lead in establishing an effective
and systematic collection of statistical data on the incidence
of head injury as soon as possible.
4.1 The data interrogated for the purpose
of this submission was extracted from the details of each enquiry
to Headway's information enquiry service, as recorded on the monitoring
sheet currently used by staff.
4.2 As the timescale for the presentation
of written submissions did not permit the analysis of large data
sets, the quarterly return for the months April-June 2000 was
selected for analysis. It was considered that this formed a representative
sample of enquiries received during the year.
4.3 Given the terms of reference of the
Health Select Committee Inquiry, and its focus on the rehabilitation
of "head injured adults", it was agreed that enquiries
selected for analysis should meet the following criteria:
The person with head injuries (the
subject of the enquiry), should be an adult, that is, over 16
years of age;
Other acquired brain injury (such
as subarachnoid haemorrhage), would be included in the analysis
if connected to an incident of traumatic brain injury;
The enquiry itself should focus on
Rehabilitation should be understood
as including both formal and informal services and support;
Analysis should express the rehabilitation
enquiry in terms of an unmet need, absence of lack of rehabilitation.
4.4 During the selected months, April-June
2000, a total of 1,285 enquiries was received by the information
enquiry service. From these, 231 enquiries met the criteria for
inclusion in the analysis. These will henceforth be referred to
as "the sample".
4.5 The sample was analysed according to
the following criteria:
Length of time since incident of
Enquiry focus on rehabilitation.
4.6 The sample was then interrogated to
define the common themes present. This interrogation identified
six major issues connected to rehabilitation:
A refusal of a referral to a clinician
or for rehabilitation;
The provision of an inappropriate
referral, rehabilitation, or treatment;
A need for community support;
A direct request for a rehabilitation
A need for a referral to an appropriate
A need for vocational or educational
4.7 The total number of rehabilitation themes
present in the sample is greater than the number of enquiries,
since it was not uncommon for a single enquiry to be connected
with more than one theme.
4.8 In connection with the rehabilitation
theme, it was noted what associated problem had prompted the enquiry.
These were divided into four areas:
4.9 Again, it must be noted that enquirers
generally mentioned more than one associated problem connected
with a single enquiry.
5. ANALYSIS OF
5.1 Enquirers to the Headway service were
generally prepared to self-identify (as head injury survivors,
carers etc). A total of 30 per cent of enquiries were received
from people with head injuries themselves. Most head injury survivors
were in the mid 20s to late 30s age group, which corresponds to
the figures referred to in the epidemiology. They were therefore
an economically active group, some approaching the height of their
earning power and responsibilities.
ENQUIRER BY TYPE AND SEX
||Sex of Caller||Sex of Person with TBI1
|Person with TBI||69 (30%)
|Other Relative/Friend||40 (17%)
|Other/Not Known||10 (4%)
1 TBI = Traumatic brain injury.
2 NK = Not known.
3 NA = Not applicable
5.2 A further 43 per cent were enquiries received from
spouses, partners, parents, relatives and friends.
5.3 As a result, it is clear that a very high percentage
of enquirers, 73 per cent, were people directly affected by head
injury. This would indicate that enquirers found difficulty in
obtaining necessary information elsewhere.
5.4 The relationship of the caller to the person with
the head injury was fairly evenly divided between spouses/partners,
parents and other relatives or friends. Adult siblings had high
representation in the last category, particularly when the injury
was severe, or the head injury survivor remained in an acute or
post-acute hospital setting.
5.5 Because of the age of the head injury survivors,
the parents identified in the sample were at least in their late
40s and 50s, and potentially taking on caring roles for a young
adult when approacing retirement. This has implications for the
long-term support of carers, and that of the adult with head injuries,
who may need regular, intensive supervision or support to enjoy
a modicum of independence.
5.6 Although there is no intention to draw definitive
conclusions about the significance of the gender of enquirers,
it can be noted that most enquirers were women. This is true both
of head injury survivors, and those making enquiries on their
5.7 Generally, enquiry information does not register
the severity of the head injury, since the collection of detailed
medical information is outside the scope of the information enquiry
service. However, in 2000, attempts were made to identify instances
of mild head injury in enquiries, which according to recently
published research, is responsible for 80 per cent of head injuries
in Europe. It can therefore
be estimated that in this sample, 11 per cent of enquiries were
made in connection with a mild head injury.
5.8 Similarly, although the age of enquirers is noted
if provided, it is not sought directly unless the subject of the
enquiry is a child (under 16). However, the age of older (over
60) subjects is noted as far as possible, since anecdotally there
is strong reason to suppose rehabilitation is not made as accessible
to older head injury survivors, particularly those over 65 years,
as it is to younger survivors. In this sample, 5 per cent of enquiries
involved a person with head injuries who was over 60.
5.9 Nearly a quarter of the sample were professionals
making enquiries on behalf of particular clients, or for the benefit
of their own service. The majority of these professional enquirers
were from the statutory services, either health or social services.
5.10 These enquiries were made because sources of information
or services could not be identified in the enquirer's own statutory
agency. The following is a typical request for information.
Disability Services Advisor, North-Western Community Healthcare
Trust, has 23-year-old client with serious head injuries. The
community psychiatric nurse is out of his depth, and the client
needs more in-depth counselling. Can you help?
6. ANALYSIS OF
6.1 Not all enquirers gave details on the timescale of
their head injuries. However, 16 per cent of enquirers contacted
Headway within six months of the incidence of the head injury,
and a further 10 per cent of enquiries were made between six months
and two years of the injury.
Enquiries By Length of Time Since Traumatic Brain Injury
|Time since TBI||Number of enquiries
|up to 6 months||37 (16%)
|7-12 months||10 (4%)|
|13 months-2 years||13 (6%)
|25 months-5 years||22 (10%)
|61 months-15 years||18 (8%)
|>15 years||10 (4%)
|Not Known||121 (52%)|
6.2 Two years is considered a significant marker in post-head
injury recovery. Although the length of this time period is debated
amongst professionals and researchers in the neurosciences, there
is agreement that a point is eventually reached at which the rate
of improvement in rehabilitation slows down. For the purposes
of analysis, we have chosen two years to represent this point.
6.3 It is therefore disturbing to realise that a high
number in the sample were contacting Headway for the first time
at a point post injury far in advance of two years. This may have
a detrimental effect on their prospects of recovery.
6.4 A total of 18 per cent of enquiries indicated that
the incident causing the head injury occurred between two and
15 years prior to the enquiry, and in a further 4 per cent, this
time interval was more than 15 years.
6.5 In enquiries in which the time interval was over
four to five years, it was noticed that the person with head injuries
was less likely to have received rehabilitation.
Miss X had a head injury 11 years ago following a fall
while horse riding. Diagnosed with two skull fractures. In hospital
for approximately 10 days. No rehabilitation. At time of enquiry
suffering from depression (quite severe at times), fatigue, balance
problems, and distressing short-term memory problems.
6.6 Injuries which were less severe, might still have
severe long-term consequences. For example, a mild head injury,
if untreated or inappropriately treated, and whether occurring
recently or in the past, could cause the enquirer to identify
symptoms and long-term effects similar to those experienced by
a survivor of more severe injuries. This supports the findings
of the recent Thornhill study referred to in the Epidemiology
Mrs W enquiring on behalf of daughter now aged 22. Head
injury sustained five years ago through a fall on ice. Daughter
experienced concussion. Now not the girl she once was. Behaviour
has changed. Intolerance of noise, headaches. Concentration skills
not as they used to be. No evidence of rehabilitation having been
6.7 At present, rehabilitation, if provided by the NHS,
is most usually provided in the form of a finite programme of
care. That is, an assessment is made following the post-acute
stage, and a rehabilitation programme based on the needs of the
individual at that point in time is implemented. The time period
may vary from weeks to months, and sometimes longer. However,
once this is over, the individual is returned to the community
and to whatever support is present. They then cease to be the
responsibility of any secondary care or rehabilitation team.
6.8 However, this does not mean that the person with
head injuries will never again require professional intervention.
Quite the contrary, the case studies included in this document
give some indication of how over time, one head injury survivor
may require several interventions during certain periods. This
is to counter specific difficulties: emotional problems, vocational/employment
difficulties, educational difficulties, behavioural problemsall
of these and more may cause severe distress to the head injury
survivor and their family.
Mr S enquiring on behalf of his daughter. She received
her head injury in a road traffic accident in 1976. Lately has
been having trouble keeping employment. Has had a series of jobs,
but walks out after a few weeks. Also has a sight impairment as
a result of the accident.
6.9 If an intervention is not forthcoming, the problems
of the person with head injuries can cause a domino effect, creating
a pattern of destruction in the crucial minutiae of everyday life.
This in turn destabilises the personal situation for that individual
and compromises their ability to live independently.
Miss T received a head injury in a car accident about
a year ago. Currently involved in litigation. Was a "high-flyer"
in a City accounting firm up until the time of the accident. In
a mess with her finances. Can't deal with paperwork for day-to-day
matters, let alone with the litigation material. Desperately needs
help. Housing problems. Had a possession order served. Had local
advice. Always tired. No one's ever sympathetic. Problems with
benefits. Can't understand the system. Terrible organisation problemsfinds
difficulty in talking and explaining to people (officials). Can
someone come and help her, please?
6.10 The aim of rehabilitation is to re-establish the
independence of the individual in society. It should be noted
that creating a seamless service for the many individuals like
Miss T and their families is not simply about formal programmes
of care. It is also about ensuring that agencies and organisations
likely to deal with head injury survivors are sufficiently informed
about their likely difficulties.
7. THEMES OF
7.1 Of the themes which emerged around rehabilitation
needs, the most common was that of community support. The level
of detail about the individual's associated problems indicates
that the search for practical help was triggered by the problems,
rather than anticipating them.
Mr B, sustained head injuries in a road traffic accident
10 months previously. In hospital for seven weeks, back in the
community since then. No apparent rehabilitation. Can't drive,
and can't work because of this. Slower thought processes, and
reduced visual perception. Looking for local support group.
Mr W of a local disability advice line has a client whose
partner sustained a head injury at work 18 months ago. Apparently
no rehabilitation. Psychological changes affecting behaviour.
Individual no self-awareness of changes. Refusing help and benefits
Referral from a solicitor for Miss H, a 20 year old head
injury survivor. Sustained a head injury five years ago. Memory
problems. Now pregnant, and needs advice on aids etc to help her
look after her baby successfully.
7.2 However, as can be seen from these examples, community
support is frequently only part of the equation. All of these
head injury survivors displayed a need for a multi-disciplinary
approach to their support. Their problems were complex, and being
experienced not in a vacuum, but within a specific social situation
in which others close to them played an integral part.
7.3 Quite often, returning to the community means returning
home to family carers without any statutory support and help.
7.4 The role of carers today receives more recognition
than in previous years. In the case of head injury survivors,
carers are often placed in a uniquely difficult situation. The
immense psychological, emotional and cognitive changes may alter
the personality of the individual with head injuries to such an
extent, that they may have become, to all intents and purposes,
a different person. The situation is often compounded because
to outsiders, the head injury survivor may have no observable
disabilities. This may lead to the problems of the survivor and
carer being belittled, misunderstood and dismissed.
ENQUIRIES BY REHABILITATION NEEDS AND ASSOCIATED PROBLEMS
|Reason(s) for Enquiry||Total
|Has Been Refused a Referral or|
|Has Been Given Inappropriate Referral/|
|Needs Community-based Support||74 (32%)
|Looking for a Rehabilitation Unit||69 (30%)
|Needs Professional Referral||64 (28%)
Total number of enquiries = 231 (see Table 1)
7.5 Needless to say, on the evidence of this sample,
there were little or no services to support either head injury
survivors or carers in the community.
7.6 Many enquirers in this sample were carers labouring
under extreme pressures. In these situations, behind the shorthand
of the monitoring form is hidden a long and distressing phone
call to one of the information enquiry service's sympathetic team,
and a situation needing to be addressed.
Mrs P calls.
Husband has completely lost his memory. Talks about suicide.
Mrs S calls.
Husband had head injury four years ago. Gets very emotional, very
angry. All the children have left home because of it. Wants to
find somewhere for him to live. Even respite care would help.
Has no money to pay for anything.
Mrs F calls.
Marriage breakdown after husband's head injury. Now divorced.
Psychological effects very severeemotional problems. Has
eight-year-old son. Concerned about child being with father. Will
he be safe?
7.7 Some circumstances also highlighted difficulties
in the environment, as well as a lack of community support. For
example, head injury survivors and carers in rural settings potentially
face double isolation, firstly from the effect of the injury itself,
secondly from being distanced from potential help by the effect
of the injury, compounded by the poor access offered by the environment.
Mrs H. Had sustained a severe head injury, possibly some
Lives in rural Staffordshire. Very upset. Very isolatedcan't
get to local group. Main problems cognitive and psychologicallanguage
problems and memory problems. Mood swingsshe speaks of
them as "very evil".
Mrs W. Head injury in car accident several years ago.
Lives in rural North-East. Isolated from support. Has real difficulty
in trying to develop social activities, owing to inability to
tolerate fluorescent lighting, noise and crowds. Language problemscannot
read (was lecturer). Experiences physical pain from injuries sustained.
Becomes depressed and emotional.
7.8 The result of many enquiries in this sample was to
be advised by information staff to seek a referral to a professional
in the neurosciences. This was usually either a neurologist or
7.9 In many of these enquiries, this was in conjunction
with a previous inappropriate referral, or treatment.
Mrs B called on behalf of her 65-year-old husband.
Fell one year ago40ft. Diagnosed with mild head injury.
CT scan showed small haemorrhage. Only referred to psychologist
(not neuropsychologist). Being seen in two months, she thinks
he will be discharged. Husband has short-term memory loss, anger
and bad headaches, especially on right hand side.
7.10 It is not possible from this sample to say in general
what influenced the treatment or referral choices which seemed
to be inappropriate. In specific instances this appeared to be
linked to a lack of awareness of the issues involved among non-expert
health professionals, as highlighted by a recent UK study. 
Mr S, former police officer, sustained a head injury one
year ago in cycle accident.
Tinnitus, sensitivity to noise reported. Distressed by concentration
problems. One side of face numb, nervous tic. Also fatigue.
When accident happened, sent straight home. No hospitalisation
or referral to neurospecialists.
Ms C rang on behalf of father who sustained mild head injury
after a fall from a ladder two weeks ago.
Unconscious for five minutes. Discharged with a diagnosis
of mild head injury. Having double vision and other problems.
Advised to seek a referral to a neurologist.
7.11 Many of the professionals in the study were aware
that they needed to identify services for their clients, but were
unable to obtain that information from their own agency. This
was particularly noticeable in the number of requests received
for details of rehabilitation units.
OT enquiring on behalf of client with traumatic brain injury.
Has been transferred back to the referring general hospital from
the acute neurological ward. Has perceptual and cognitive problems.
She needs to find a placement for him. The brain injury unit at
the hospital is full, and cannot take him.
7.12 The above request is typical of others received.
These non-expert professionals were unaware of the existence of
a UK-wide directory of traumatic brain injury rehabilitation units
produced up until two years ago by a leading Scottish rehabilitation
centre. The future of this valuable resource is now in doubt through
a lack of funding.
7.13 For some enquirers the delay in receiving an appropriate
assessment caused unnecessary difficulties and distress. The delay
may have originated in an inappropriate referral, or because of
a lack of continuity of care between one unit or hospital and
Mrs X enquiring on behalf of her husband, who had a car
accident. Sent to see a clinical psychologist. Told to see a neuropsychologist.
Five months waiting time.
Mr M received mild head injury last January. Didn't receive
a neurological assessment until November.
7.14 Of the four enquiries where rehabilitation was refused,
three were apparently concerned with the reluctance of the Health
Authority involved to fund rehabilitation. One particular case
was resolved after a period of more than 12 months, and a robust
and determined struggle by the head injury survivor's parents
not to accept less than the rehabilitation which assessment had
identified as being appropriate and necessary to the individual's
7.15 When such difficulties occur, valuable time is lost
for the survivor to make progress. What is equally destructive,
is the effect on survivor and family of a prolonged stay on a
general surgical or other hospital ward where the head injury
survivor's problems, especially agitation and behavioural effects
are not understood by staff. Although it so happened that none
of the sample enquiries referred to this type of incident in particular,
it remains a common and distressing occurrence.
7.16 The majority of rehabilitation units operate an
age criterion, accepting patients between the ages of 16-60 or
16-65. While this reflects the younger age group of the majority
of head injury survivors, such criteria can serve to discriminate
against active older people whose need for rehabilitation is no
different from their younger counterparts.
Ms H, daughter of head injury survivor called. Father
sustained head injury six weeks ago. Aged 62. Been quite aggressive.
Lack of rehabilitation for him.
Brother called on behalf of younger brother, aged 78. Fell
in shower and sustained head injury. Found unconsciousbrain
haemorrhagesuccessful operation. On mend in hospital. Now
in residential care and not flourishing. No rehabilitation suggested.
7.17 Research suggests there is no reason why older people
with head injuries should not make progress during rehabilitation.
Although their recovery may not be to the same extent as younger
survivors, they can still make considerable progress. Anecdotally,
Headway has heard from past enquirers who have substantiated the
positive effect rehabilitation can achieve with older people.
7.18 An issue for people of working age is that of returning
to their previous employment, or to some kind of economic self-sufficiency.
The lack of support was particularly noticeable in enquiries relating
to mild head injury. To some extent it stemmed from a lack of
awareness in the individual with the head injury themselves, as
well as their employer, on the nature of head injury and its effects.
Mrs W enquiring on behalf of daughter, aged 24. Sustained
mild head injury four to five weeks ago. Post concussion syndrome.
Returning to work part-time. Fatiguedlost confidence.
Mrs P calling on behalf of husband. Has been to see clinical
psychologist. Has estimated IQ reduced after head injury. Only
10 per cent of memory. Having problems with new learning. Is engineer
by profession. Afraid he might kill someone by making a mistake.
7.19 Although none of the enquirers in this sample spoke
of losing their employment against their wishes, some were simply
not able to return to work, and could not foresee any alternative
to living on benefits. The better the insight into the cognitive
changes which were affecting them, the more demoralising the recognition
of the skills which had been lost. However, some enquirers showed
how it was possible for an employee and employer alike to deal
with problems which arose.
Ms B sent the following email. I had my accident in 1997,
and after discharge from the specialist units and other hospitals,
I had care from the Neuro[sic] for talking/memory. I came back
to work part time in February two years ago, and full time from
March last year.
I had not been aware of aggressive/argumentative behaviour
. . . this week I had a good meeting with my managerI was
told I can be short tempered at workwhich I myself don't
notice. I am concerned that I can act like this and don't know
how to handle this. Is there information on where I could go to
get help/advice on how to deal and correct this?
7.20 There is very little in the way of vocational rehabilitation
available to head injury survivors, much of whose problems relate
to cognitive and behavioural difficulties rather than physical
symptoms. However, if appropriate programmes were offered, it
could reduce the number of individuals and families on benefits,
and allow people with brain injuries to both use the skills they
still possess, develop new skills, and so remain economically
8.1 This submission demonstrates Headway's concern that
a number of factors are preventing the provision of effective
rehabilitation to people with head injuries.
8.2 Headway feels that if the Government adopted the
recommendations of this submission, many of the concerns and problems
identified by those directly affected by head injuries could successfully
8.3 The new NHS plan, which Headway welcomes, clearly
puts patients and carers at the heart of health and social care.
The adoption of Headway's recommendations would make this goal
a reality for head injury survivors, their families and carers.
HEADWAYTHE BRAIN ASSOCIATION: HISTORICAL NOTE
In mid-1979, an advertisement appeared in the Daily Telegraph
asking for holiday accommodation for the brain-injured son of
Sir Neville Butterworth. Dinah Minton, who had an injured son
herself, answered the advertisement. Together with Barry Minton,
the three of them set out to discover what facilities existed
in the country for survivors of brain injury after they were discharged
from hospital. They found there was a club in Birmingham Accident
Hospital, run by Philip Lockhart, and one in Nottingham Hospital,
where Reg Talbott was a social worker. They found nothing else.
Realising the need, they resolved to form an organisation
to work for the benefit of brain injury survivors and their families,
setting up a steering committee in 1979 and registering HEADWAY
National Head Injuries Association as a charitable trust in 1980.
Improved skills in the ambulance services, accident and emergency
departments and in neurosurgery had resulted in the markedly increased
survival rate amongst accident victims. Rehabilitation services
had not shown similar improvement. Headway resolved to work with
the medical profession to achieve better standards of treatment
and to provide support groups throughout the country for survivors
and their families.
In March 1992 a grant from DHSS enabled Reg Talbott's appointment
as Director and in July 1983, 250 people attended the first International
Head Injury Conference in London on the busiest day.
Meanwhile in Gloucester, Roger Fitzsimmons was inspired to
establish a day centre to assist in long-term improvement, to
ease family burdens, to improve social skills and to maintain
liaison with hospitals on behalf of those discharged. With his
helpers they transformed a semi-derelict bungalow in the hospital
grounds. The first Headway House was opened in August 1983 and
was an instance success.
Philip Lockhart edited a quarterly newsletter which was distributed
widely even to those overseas who had attended conferences and
by 1985 there were similar organisations in Australia, Canada,
Holland, New Zealand, South Africa and the USAseveral of
which used the Headway name. As the only cure for brain injury
is prevention, much effort was put into pressing for the introduction
and wide usage of rear seat belts, helmets for horse and cycle
riders, airbags and the provision of cycle tracks.
During the last 10 years, with Ian Garrow as Chief Executive
and Nigel Cutts, Rita Rees and David Turner leading the Board
of Trustees, Headway has made great progress. The charity led
in the establishment of the Neurological Alliance, the Parliamentary
Group on Acquired Brain Injury and a European brain injury family
In 1999, Headway changed its name from HEADWAY National Head
Injuries Association to Headwaythe brain injury association.
Headway has reason to be proud of its achievements in improving
the lot of those who have survived brain injuries and of their
carers. Much has been achieved, but far more needs to be done
under the leadership of Headway's new Chairman Sir William Doughty,
Chief Executive Kevin Curley and the Board of Trustees.
EPIDEMIOLOGY OF HEAD INJURY (TRAUMATIC BRAIN INJURY)
In a 1991 study for the Department of Health (1) McMillan
and Greenwood state with regard to traumatic brain injury that,
The annual attendance rate of patients at casualty is high
(eg 1778 per 100,000), but many fewer of these tend to be admitted
(2), estimates in the UK being about 270-310 cases per 100,000
of the population per annum (2,3).
As shown below, extrapolating this figure across Great Britain
and Northern Ireland gives the statistic of one million as attending
hospital per year.
The majority of these cases will have a less severe injury.
One study indicated "minor" head injury in 84 per cent
of cases, 11 per cent sustained a "moderate" head injury
and 5 per cent were severe or worse (4). Other studies suggest
that 7 per cent of admitted cases may be severe or worse (5).
Assuming a population of 60 million in Great Britain and
Casualty attendance: 1778 per 100,000 = 1,066,800 in the
Number admitted: 270310 per 100,000162,000186,000
Minor head injury: 84 per cent of the number admitted = 136,080156,240
Moderate head injury: 11 per cent of the number admitted
Severe head injury: 5 per cent or 7 per cent of the number
5 per cent = 8,1009,300
7 per cent = 11,34013,020
McMillan and Greenwood do, however, caution that, "Such
figures are dependent on criteria for classification; Over estimation
of severe injury is easy . . .".
They also quote the "more conservative estimate",
suggested by the Medical Disability Society "using criteria
which might be more predictive of long term disability".
This cites severe head injury as eight per 100,000 = 4,800 Moderate
head injury as 18 per 100,000 = 10,800.
The most recent study, that by Thornhill et al (6),
looked at the frequency of disability in young people and adults
admitted with a head injury over one year to one of five hospitals
in Glasgow and estimated the annual incidence. The study indicated
that the incidence (1,400 per year in Glasgow, population nearly
1,000,000) is far higher than previously estimated.
This reflects a higher level of unrecognised problems following
discharge in a large number of cases of patients admitted to hospital
with an apparently mild head injury.
The authors believed that under-appreciation of the frequency
of problems after head injury contributed to inadequate services
The Royal College of Surgeons in the Report of the Working
Party on the Management of Patients with Head Injuries (June 1999)
(7), refer to a study by The British Society of Rehabilitation
Some 63 per cent of adult patients who sustain moderate
head injuries and 85 per cent of patients who sustain severe head
injuries remain disabled one year after their accident. Even patients
with minor head injuries have problems. Three months after sustaining
mild head injuries, 79 per cent have persistent headaches, 59
per cent have memory problems and 34 per cent are still unemployed.
Only 45 per cent of patients who have sustained a minor head injury
have made a good recovery one year after submission.(8)
Further to this, The National Traumatic Brain Injury Study
(February 1998), states that, as a result of a traumatic brain
each year at least 2000 adults suffer serious impairments
which remain with them forever. Many of these are people aged
under 30, and since for the majority life expectancy is little
altered, prevalence is highbetween 50,000 and 75,000 in
1990. The residual handicaps and mental changes suffered by young
subjects place a huge burden on their families and communities,
whilst older survivors may additionally find themselves unable
to fulfil their accustomed roles.(9)
The 1996 report, Assessing the Long Term Residential Needs
of People with Traumatic Brain Injury, produced by the Nottingham
Trent University and Headway (10), estimated the prevalence figure
to be much higher at 135,000 by the year 2000.
Clearly, these figures indicate a large population of people
who could potentially benefit from rehabilitation in order to
return to a productive life. At present, however, there is not
effective, systematic approach to collecting data on the incidence
and prevalence of traumatic brain injury. Much of the epidemiology
data quoted in current reports is still derived from the 1991
Discussion Paper for the Department of Health by McMillan and
Some experts have cast doubt on the reliability of the use
of Hospital Episode Statistics for traumatic brain injury. These
are based on the ICD (International Classification of Diseases)
10 Codes because they seem to be collected by administrative staff
after the event. Also there was a dramatic fall in the figures
for traumatic brain injury in some regions when the various parts
of the UK transferred to using ICD10 from ICD9. Since not all
sites transferred during the same year, the sudden drop in numbers
was clearly related to the recording of the information not to
a change in policy (11).
This opinion is reinforced by Shoumitro Deb, Clinical Senior
Lecturer and Honorary Consultant in Neuropsychiatry at the University
of Wales College of Medicine, who conducted a study based on data
collected from Cardiff Royal Infirmary Accident and Emergency
Department's case register on all head injury admissions to hospitals
from South Glamorgan between 1 April 1996 and 31 March 1997. Comparing
data with that obtained from the Health Authority's central database
by using the ICD-10 codes (12). Deb states that,
By using the ICD-10 codes, less than 50 per cent of all
head injury admissions could be detected. Anderson et al. (13)
found nearly two-thirds of head injuries selected by ICD codes
were excluded when the medical records were reviewed. It is worth
mentioning that the ICD codes are often completed by the less
experienced trainee doctors working in the unit and sometimes
by other non-medical clinical staff.
Without comprehensive epidemiological data it is very difficult
to ascertain the extent of the problem. The collection of such
data would seen a logical starting point when planning services.
(1) McMillan T, Greenwood R, (1991). "Rehabilitation
Programmes for the Brain Injured Adult: Current Practice and Future
Options in the UK" Discussion paper for the Department of
(2) Jennett B & MacMillan R (1981). "Epidemiology
of Head Injury", Brit Med J, 282, 101-104
(3) Field J H, (1976). Epidemiology of Head Injuries
in England and Wales. London: HMSO.
(4) Miller J D & Jones P A (1985). "The Work
of a Regional Head Injury service", Lancet 1, 1141-1144.
(5) Lewin W, "Head Injuries", BMJ, 1959:
(6) Thornhill et al (2000), Disability in young people
and adults one year after head injury: prospective cohort study,
BMJ; 320: 1631-5.
(7) The Royal College of Surgeons (1999). Report of
the Working Party on the Management of Patients with Head Injuries.
London: The Royal College of Surgeons, pl.
(8) The British Society of Rehabilitation Medicine (1998).
Rehabilitation after Traumatic Brain Injury, London.
(9) Centre for Health Services Studies University of
Warwick (1998). National Traumatic Brain Injury Study.
Coventry: Centre for Health Services Studies University of Warwick,
(10) Higham et al (1996). Assessing the Long Term
Residential Needs of People with Traumatic Brain Injury. Nottingham:
The Nottingham Trent University & Headway, p13.
(11) Correspondence from Dr Judith Wardle (Chief Executive
of the Children's Head Injury Trust) to Kevin Curley (Chief Executive
of Headwaythe brain injury association), October 2000.
(12) Deb S (1999). "LCD-10 codes detect only a proportion
of all head injury admissions", Brain Injury, 13(5):
(13) Anderson et al (1980). "The National Head and
Spinal Cord Injury Survey: design and methodology", Journal
of Neurosurgery, 53: 511-18.
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