APPENDIX 1
Memorandum by Mr John Allan (MH 8)
1. SUMMARY
I give evidence based on my experience with the care
of my son by the mental health services. He died as a failure
of those services and because of shortfalls in the arrangements
for care in the community. There is a particular patient group
with Asperger syndrome and related disorders for whom the system
does not function effectively and who do not fit neatly into existing
categorisations. Although I focus on the interests of this particular
group the criticisms are also general and likely to apply to other
patient groups. Problems are described with inter-authority co-operation,
definitions of learning difficulties versus mental health, the
Section 136 "place of safety" arrangements, poor initial
assessment in the secure service, and with Section 117 aftercare
planning.
2. INTRODUCTION
2.1 I submit evidence as father of a young
man aged 24 who died in1997 in an incident. The Coroner's inquest
arrived at an open verdict. My son was receiving mental health
services at the time and was resident in a privately-run care
home. The care home has currently been charged with alleged offences
under health and safety legislation arising from my son's death
and the outcome of that process is awaited.
2.2 My son had long term special needs and
was diagnosed as Asperger syndrome (part of the autistic spectrum)
while adolescent. This is a "mental" not physical condition
and is lifelong. Sufferers are at risk of added mental health
problems.
2.3 In 1995, my son became resident in a
care home specialising in Asperger syndrome and initially had
no need of mental health services. He later became anxious, then
depressed, and received out-patient mental health services. He
was then detained under Section 2, was returned to the care home,
expelled, detained in a police station under Section 136, ejected
from the host county back to the funding county, spent time between
detention on section 2, and voluntarily, carried out self-harm
attempts, was detained under Section 3, transferred to a specialist
private assessment hospital under section 3 detention and released
by the Mental Health Review Tribunal. While the subject of Section
117 aftercare plan, he was eventually installed in a home for
people with learning difficulties and some challenging behaviour.
He continued to receive out-patient mental health services until
his death in February 1999.
2.4 I have been pursuing both the failure
of my son to receive successful treatment leading up to his expulsion
from his home in 1997 and the planning processes which led to
his final placement and death in a care home which is under investigation
by the authorities. I have become concerned at:
— the level of care given to those
with mental health problems generally;
— the manner in which current services
fail that particular sections of the population with Asperger
Syndrome and related disorders;
— those adults with mental health needs
funded by one authority and resident in another.
My evidence is given below. The naming of people
and authorities has been avoided but these details are available
on request, as is documentary evidence.
2. GOVERNMENT
DEFINITIONS AND
CATEGORISATION OF
MENTAL ILLNESS
2.1 Social Services Provision—Learning
Difficulties vs Mental Health
While my son was adolescent and being assessed for
his community care needs, he was categorised to be dealt with
by the Learning Difficulties section of social services as it
was said that autistic people fell within that service. Later,
he was passed over to the Mental Health section of social services.
Ostensibly, the introduction of a mental health professional was
to ensure that there were more staff available when my son made
contact while in an anxious state. In reality, this was a prelude
to transferring the responsibility to the mental health section.
This transfer effectively placed certain local community care
facilities beyond my son's reach at a later date when it may have
been helpful. I now know that this as foretaste of a categorisation
problem my son was to experience later and which may have impeded
effective treatment.
Recommendation: Categorisation of learning
disabilities and mental health should be clarified and services
representing the two groups should work more closely and co-operatively
in place of the existing "pass the parcel" approach.
2.2 Health Service Provision-Learning Difficulties
vs Mental Health
When my son first received mental health treatment
in1997, this was from the Learning Difficulties section of the
local mental health service in the area in which he was resident.
In contrast, when he was expelled from his care home and returned
to the funding authority area, he was treated by the Mental Health
section of the mental health service. The written debate between
these two specialisations is recorded. I suspect that this conflict
about categorisation was connected to issues of funding liability
and may have impeded my son's effective treatment. The distinction
certainly did not produce a seamless service using all available
resources to the optimum in the interest of the patient.
Recommendation: As in paragraph 2.1,
the status of borderline categorisations should be clarified,
to provide a more seamless service.
2.3 Learning Difficulty v Mental Health
For the purpose of attributing responsibility
for community care services and mental health treatment, categorisation
of the Asperger syndrome end of autistic spectrum disorders is
unclear. Views on the boundary between learning difficulties and
mental health for this group of people appear to differ widely
within authorities and across the country. I have copies of file
documents demonstrating such failure to agree within two organisations.
Recommendation: Guidance should be given
to prevent confusing differences in the way that learning difficulties
and mental health are dealt with.
3. THE ABILITY
OF CARE
IN THE
COMMUNITY TO
CATER FOR
CERTAIN GROUPS
3.1 Flexibility, Co-ordination and Resources:
3.1.1 In my son's case, at an early stage of
mental health treatment the consultant mental health doctor concluded
that a mental health ward was contra-indicated. This was dealt
with temporarily by releasing my son back to the care home on
section 17 leave, with health service staff supporting the care
home. Unfortunately, the support was withdrawn after a few days
due to cost. This withdrawal was a factor in the breakdown of
the placement in the care home and eventual detention under section
back in the area of the original funding authority. This was all
at a far greater cost to the health service overall and an adverse
impact on my son's condition.
Recommendation: Consideration should
be given to providing more flexible services to maintain people
in the community where there is a short-term crisis.
3.1.2 In my son's case, the added support
to be provided by health to assist the care home and maintain
a place in the community, initially under section 17 leave, had
been applauded by the Mental Health Review Tribunal who considered
his appeal against a section 2 order. However, the support was
withdrawn within days.
Recommendation: More importance should
be attributed to MHRT recommendations when upholding power to
detain under section and recording conditions of section 17 leave.
3.1.3 Co-ordination between health services
in the original funding locality and those in the "host"
locality would have helped to avoid this problem. I was informed
that "funding" problems between home and distant authorities
had been a factor in the breakdown of continuous treatment in
my son's case.
Recommendation: The respective duties
of funding area and host area mental health services should be
clarified.
3.2 Section 136 Place of Safety:
3.2.1 Proper use of the place of safety
provision will help maintain a place in the community for people
with acute mental illness. When a police station is used for this
role the code of practice is that the police will notify local
social services who will provide an Approved Social Worker to
confer with the doctor carrying out the assessment. The Code is
specific on this point. There are several problems.
3.2.2 In my son's case, no ASW was present
before he was discharged from the police station as not justifying
detention under section. This was a police omission. Partly because
of this, adequate arrangements for his subsequent care were not
made so that by the next day his condition had deteriorated enough
so as to require detention under section. So, an opportunity was
lost to maintain this young man's place in the community. Instead,
he embarked on a whole year detention under section and a worsening
of his condition.
Recommendation: the roles of parties
involved under section 136 should be clarified.
3.2.3 I have spoken to several health and
social services professionals on this, each with a disturbingly
different understanding of the proper procedure.
Recommendation: A study is needed into
variations in interpretation of the procedures contained by Section
136 and action taken if required.
3.2.4 The local Social Services authority
responsible wrote to me explaining that an ASW really was not
required in my son's case as the doctor at the police station
had already said he was fit to release, so there really was no
need for an ASW. I asked for a copy of their own procedure on
Section 136 and it was clearly stated (in bold type by the authors
to emphasise the point) that the ASW should see the person detained
even if the doctor decides the person is fit to be released.
Recommendation: Health, social services
and police authorities should be reminded of their roles under
section 136.
3.2.5 Some professionals justify their view
by referring to section 10.14 of the code. This stipulates the
person detained being seen by both the doctor and the ASW unless
the circumstances in section 10.8a of the code apply. The latter
section can be taken to provide a let-out when the doctor concludes
that the person is not mentally disordered within the meaning
of the Act, so that they can then be discharged immediately.
Recommendation: sections 10.14 and 10.8a
of the code are ambiguous and are a factor in the widely different
interpretations I have encountered; they should be re-written.
3.3 Inspection of Community Care Facilities
Success of care in the community depends on
suitable placements. These placements need adequate monitoring
in order to maintain quality. The inspection and registration
authority in each locality reports on inspections carried out.
In the case of the care home where my son lived when he died,
the next local authority report based on an inspection after his
death does not report the loss of a resident in an accident. It
is arguable this is not in the public interest.
Recommendation: the role and function
of registration and inspection authorities should be reviewed.
3.4 Proper section 117 planning is essential
in the transition from secure mental health services. This is
covered in detail below (paragraph 4.4).
4. THE TRANSITION
BETWEEN THE
ACUTE AND
SECURE MENTAL
HEALTH SERVICES
4.1 Section 136 Place of Safety
A place of safety can either lead back into the community
or on into secure mental health treatment. Evidence of the importance
of proper 136 arrangements to preserve place in the community
is given in paragraph 3.2. In terms of secure mental health services,
there are two points to make:
(1) operation of section 136 is one determinant
of load on the secure services (in my son's case, the section
136 weakness led to the need for a secure service when in it is
likely it could have been avoided.
(2) where transition from place of safety
to secure service is unavoidable, the better the section 136 process
is conducted, the more likely the former is to succeed. In my
son's case, the section 136 deficiencies meant that there was
very little illuminating information available to the secure service
in order to assist accurate early assessment.
Recommendation: section 136 events are
a crucial factor in patients' lives and their importance should
be emphasised.
4.2 Initial Assessment in Secure Service
Adequate initial assessment on reception into
the secure service is essential. In my son's case, during the
first two weeks he was not seen properly by a doctor, a fact established
only at a hearing of the Mental Health Appeal Tribunal. Later
enquiries established that all the consultants were on holiday
at the same time, although of course this was not allowed for
nursing staff. In my son's own written words presented to the
Appeal Tribunal:
The doctor has not seen me in two weeks, neglecting
by autistic needs. There has been a lack of care given to my individual
needs in hospital. My previous consultant's opinion was that a
hospital is the wrong place for me. Autism is a very serious condition
and needs special care and attention. Both wards failed to do
this. I do not feel safe in hospital. I should never have been
in hospital in the first place.
Recommendation: Measures should be put
in place to ensure that initial assessment on transition to a
secure mental service is adequate.
4.3 Secure Service—therapeutic limitations
for some groups
In my son's case, the secure service contained
a group of patients much more severely ill than he was. Despite
willing nursing staff, his needs were not met and the lack of
mental and physical stimulation meant he was dosed by drugs to
contain him. Occupational therapy was introduced only at a late
stage and with reluctance. The Mental Health Review Tribunal recorded
the secure service in this case as a severely limited therapeutic
environment.
Recommendation: Secure services for individuals
who do not have classic mental health problems (eg those with
Asperger syndrome) should be appropriate so that the person's
condition is not further damaged by an inappropriate therapeutic
environment.
4.4 Section 117 Planning
4.4.1 This after-care planning is important
for release back into the community. Six months after my son made
this step, he met his death in a manner which related to inadequate
level of care.
4.4.2 A section 117 meeting was convened
at the private assessment hospital (the bed was NHS-funded) and
relevant parties invited, including parents. It was not until
the day of the meeting that the consultant mental health doctor
for the funding Health Trust informed the meeting that he would
not be present but would discuss issues by phone with the RMO
at the private assessment hospital. A letter to this effect was
sent so late that it had not arrived at the time of the meeting.
Because of this, the other involved parties, including parents,
were not able to participate in a full debate for the purpose
of aftercare planning.
4.4.3 A later meeting was held under the
title Section 117 Planning Meeting. Though this included staff
from the proposed care home, parents were not informed and so
were unable to participate in the aftercare planning whereas section
27.8 of the code states that the nearest relative should be involved
in consideration of the patient's after care planning. Section
27.10 adds that the view of any relevant relative must be considered
by those concerned for after-care. It is difficult to see how
this is achieved if the relative is neither aware of a meeting
to discuss after-care nor invited to submit comments.
4.4.4 We parents found it difficult to get
a clear defintion of the key worker in the after-care planning
process. This was not helped by the lack of any printed guidance
to parents about the planning process. Enquiries of the Health
Trust to ascertain who had fulfilled the role of Community Psychiatric
Nurse/Mental Health Keyworker received the reply that this had
been the social worker.
4.4.5 My son died in an incident six months
after release back into the community. Witness statements taken
by the police show that very little training and preparation of
care home staff about my son's individual needs had been carried
out. Questioned at the inquest, care staff had not been informed
of the risks associated with him. This raises a question about
the effectiveness of section 117 aftercare plan documents. Also,
it has been shown that much of the information which it was claimed
passed to the care home was not in written form, so it is difficult
to define at which point in the aftercare planning chain that
the process failed.
Recommendation: Section 117 after-care
planning procedure should be more-tightly defined and more-rigorously
followed.
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