APPENDIX 22
Memorandum by Ms Marion Shoard (CC 36)
This evidence is submitted by Marion Shoard.
I have experience of the Continuing Care system through my mother,
who lived in a Continuing Care establishment in east Kent for
four-and-three-quarters years until her death in January 2005.
My knowledge of the Continuing Care system also arises from the
research I carried out for my 640-page book published in 2004
A Survival Guide to Later Life (Constable and Robinson).
I welcome the statement by the Minister announcing
that a national framework setting out criteria for assessing eligibility
for Continuing Care will be drawn up. I am particularly concerned
about the eligibility criteria as far as people with dementia
are concerned, and firmly believe that they should be consistent
across England but also reflect the prime purpose of Continuing
Care provision—to support people with very great heath care
needs.
ELIGIBILITY CRITERIA
In 2004 my mother's health trust, Canterbury
and Coastal Primary Care Trust, announced that it was going to
reassess her for her Continuing Care. I assumed that the criteria
that it would use would reflect the Department of Health's guidance
on the purpose of Continuing Care, in other words, Annex C of
circular HSC 2001/015: LAC (2001) 17, Continuing Care: NHS
and Local Councils' Responsibilities, which sets out the "key
issues to consider when establishing continuing NHS health care
eligibility criteria". However, I found that the PCT and
its overseeing Strategic Health Authority had developed sets of
Continuing Care criteria which differ markedly from the purpose
of Continuing Care as set out in HSC 2001/015: LAC (2001) 17,
Annex C.
Apart from people who are in the final stages
of a terminal illness or likely to die in the near future, Annex
C says that Continuing Care should be provided because "The
nature or complexity or intensity or unpredictability of the individual's
health care needs (and any combination of these needs) requires
regular supervision by a member of the NHS multidisciplinary team,
such as the consultant, palliative care, therapy or other NHS
member of the team". However, both my late mother's Strategic
Health Authority (Kent and Medway) and her primary care trust
(Canterbury and Coastal) put a great deal of emphasis on those
whose symptoms happen to involve disruptive, aggressive or non-compliant
behaviour. Thus in its "Mental Health Criteria", the
Kent and Medway Strategic Health Authority states that a person
must meet at least one criterion in each of three categories,
A, B and C. Three of the five criteria in A relate to disruptive,
aggressive or non-compliant behaviour, as do two of the three
under B and two of the four in C. For example, category B says
that the person must either pose "A serious risk to themselves
or others, or serious self-neglect, as a consequence of severe
and enduring mental illness or personality disorder", or
exhibit "challenging behaviour, defined as behaviour of such
intensity, frequency or duration that the physical safety of the
person is likely to be placed in jeopardy, or behaviour which
is likely to seriously limit or deny access to and use of ordinary
facilities", or to have "serious physical frailty".
Yet patients who lash out, or are disruptive,
unpleasant, aggressive or utter profanities will not necessarily
be those with the greatest health care needs. They may well be
those whom health and social services authorities find most difficult
to place in private care homes, but that is a very different matter
from the objectives for Continuing Care as set out in Annex C
of circular HSC 2001/015: LAC (2001) 17.
This emphasis on people who are difficult to
handle rather than simply seriously ill is carried through in
the eligibility framework drawn up by the Canterbury and Coastal
Primary Care Trust. In a diagram headed "Areas of Need/Degree
of Severity/Intensity/Stability", the officials assessing
people for eligibility for Continuing Care are invited to tick
a box in one of a number of categories. Several of these categories
are restricted to aggressive, disruptive, unpleasant or challenging
behaviour—"challenging behaviour/activity" and
"evidenced aggression" and "risk to self or others"—so
that those who do not exhibit such symptoms would score nil in
these areas. But the emphasis on disruptive people also bears
fruit in the sub-divisions within several of the other categories.
Thus in the category "personal care", the spectrum of
choices offered, in five divisions, does not span the intensity
or extent of a person's personal care needs arising from illness
or disability: rather it spans the extent to which the patient
when receiving help, whether it is a little or a great deal, is
resistant or compliant. The same obtains for another category,
"feeding": what is measured is not the degree of assistance
needed but whether the patient accepts help or objects to receiving
help. My mother was not at all disruptive, aggressive or non-compliant,
but had massive health care needs arising from Alzheimer's disease.
Had she lived, she may well have lost her bed in favour of a person
who was less poorly but disruptive.
Had my mother managed to hang on to her bed,
she would have faced another hurdle which also finds no place
in HSC 2001/015: LAC (2001) 17—reassessment every three
months.
Three-monthly reassessment may perhaps be appropriate
for patients who are recovering from some physical illness or
trauma. Dementia does not fall into this category. A person with
dementia is assessed as needing Continuing Care on account of
the nature, complexity, intensity or unpredictability of their
mental health needs is likely to be very poorly indeed. They are
not going to recover. The differences in suffering from dementia
arise from differences between patients, not substantial changes
over time in the impact of the condition on the individual. My
own mother, for example, was in a state of more or less continuous
anxiety and distress for six years; I did not witness any diminution
in her health care needs at all. But the Continuing Care facility
where she lived for the last four-and-three-quarters years of
her life became her "home": even if she could not name
the institution or the people who looked after her, in some sense
she became familiar with that physical space and the particular
human voices, routines of care and method of caring she experienced
there. Had her Continuing Care been withdrawn after reassessment,
she would have lost her "home". Or, perhaps she might
have been granted Continuing Care for three months, then been
refused it and moved out of her facility, then at some later stage
moved back in again. It is hard to think of any state of affairs
more likely to increase the suffering of the people involved and
of their families than the uncertainty afforded by three-monthly
reassessments. It is widely accepted that moving any person with
dementia often makes their condition worse. There is also substantial
research evidence to show that relocating any institutionalized
elderly people to a new residence can have a dramatic effect on
their mental health and life expectancy. The policy thus seems
to me cruel in the extreme but also unrealistic because it is
bound to become swamped in lengthy and expensive appeals. I do
not disagree that people receiving Continuing Care should undergo
reassessment, but the period between reassessments needs to be
carefully thought out in relation to the type of patient involved.
I urge the committee to recommend that the government's
new national framework on Continuing Care should make it absolutely
clear that the purposes of Continuing Care are those set out in
circular HSC 2001/015: LAC (2001) 17. I do not believe that Kent
and Medway is an isolated case. Thus the eligibility criteria
of Bedfordshire and Hertfordshire Strategic Health Authority,
for example, include provision for three-monthly reassessments
and devote one of their three categories of candidates for Continuing
Care to people exhibiting "Highly Challenging Behaviour".
I also urge the committee to consider aspects
of Continuing Care other than eligibility in putting forward their
recommendations to government. These are as follows:
CHOICE
I believe that if a person is granted Continuing
Care and that care is to be received in an institution—a
Continuing Care facility run by a health trust or a care home
with which the trust has a contract—then the person to receive
care, or their representative if they lack mental capacity, should
be consulted about where the person is to be placed. When my mother
was first awarded Continuing Care in 2000, I was simply informed
of the name and address of the facility where that care would
be delivered: I was not given any information about the range
of possible venues, still less any choice over which of these
would be my mother's future home. This denial of choice flies
in the face of the government's current focus on the provision
of choice in health care. I cannot see why a person granted Continuing
Care cannot be offered choice of location in the same way that,
if a person is to go into a care home and social services is to
pay the fees because the person's own financial resources fall
below the £20,000 threshold, then it must allow the person
involved a choice of home, as set out in the Direction of Choice
circular (Department of Health (1992), The National Assistance
Act (Choice of Accommodation) Directions, Local Authority Circular
(2) 27).
This denial of choice in the location where
Continuing Care will be taken also reflects a failure to acknowledge
that the places where people receive Continuing Care become their
homes. Many elderly people receiving Continuing Care have dementia
and, if such people receive sufficient food and liquid and an
equable temperature, they can live for many years, as did many
of the residents of my mother's Continuing Care facility. However,
NHS Continuing Care units (unless they fall within a nursing care
home) are treated as "health" rather than "social"
care and as a result often lack the attention paid in good care
homes to the provision of activities such as gardening, crafts,
dance, games and short outings which can make the lives of residents
more interesting and rewarding: in their absence, every day is
an almost exact replica of the day before. Attention to such matters
would also make Continuing Care establishments more interesting
and attractive for visitors. Encouraging visiting by family and
friends is particularly important in the field of dementia. People
with dementia benefit greatly from one-to-one reassurance. Even
in Continuing Care establishments, staff are unlikely to have
sufficient time to engage in this contact for as long as is desirable;
relatives and friends may have much more time at their disposal.
Furthermore, they can provide a vital link with the past for a
person with dementia and in this way help to reduce or at least
mitigate the disorientation caused by progressive loss of memory,
language and cognitive powers.
NHS Continuing Care units have been told in
a letter from the Department of Health that they should take note
of the national minimum standards for care homes and themselves
review their services to ensure that they meet them. In a letter
concerning the Care Standards Act 2000: National Minimum Standards—Care
Homes for Older People, CI (2001) 4, March 2001, the Chief
Inspector, Social Services Inspectorate of the Department of Health
stated: "Local authorities and independent providers of care
homes and any NHS trusts which provide residential care homes
should take note of these standards and review their services
so that they are prepared to meet these standards when they are
implemented".
The committee may care to consider whether this
instruction should be included in new national guidance on Continuing
Care, whether it forms part of a new national framework or comes
in some other form. They may care to bear in mind that NHS Continuing
Care units do not receive inspections or even visits from the
Commission for Social Care and Inspection in the way that care
homes do. Such visits to Continuing Care facilities as may be
made by the Commission for Health Improvement as part of its rolling
programme of inspecting health trusts involve a different approach
from the inspection of care homes. CHI officials are unlikely
to pay much attention to the extent to which such facilities provide
acceptable "home" environments, unlike the announced
and unannounced CSCI inspections of care homes in which inspectors
examine not only the physical care of residents, but also their
emotional care and whether they are given the opportunity to lead
interesting lives. Furthermore, the CSCI can require instant change
if it is concerned about what it discovers. The CHI has no similar
powers of enforcement.
Some people receive Continuing Care in their
own or a relative's home. They are also denied choice in a different
area. While people receiving community care services through social
services have the option of managing their services themselves
under the Direct Payments System, (and indeed social services
departments are now legally required to offer the Direct Payments
option), people receiving Continuing Care at home are told by
health authorities that it is not possible to receive that care
through Direct Payments. The Direct Payments system allows the
user choice over who provides a service, the nature of that service
and how and when it is provided; I believe that people with Continuing
Care (or their representatives if they lack mental capacity) should
have this choice just like those whose needs are less intense.
This state of affairs has significant repercussions.
People who receive Continuing Care at home often have a fitter
person, such as a partner, living with them who acts as their
de facto carer as they are on hand for 24 hours a day,
including the many, often extended periods, such as night-time,
when care workers and district nurses are absent. Yet in one case
I know well this de facto carer is not classed as a "carer"
as he would be if the cared-for person (his wife) received community
care services administered by social services. As a result, he
is not entitled to carers' financial benefits like Carer's Allowance
and the Carer Premium. De facto carers like this elderly
man may well not receive a carer's assessment as they would were
community care services involved. Finally, and perhaps most importantly,
the pretence that visiting care workers and nurses can provide
all the care that is needed to deliver Continuing Care at home
means that these de facto carers are likely to receive
little, if any, training. They deserve proper training, both in
the care of the cared-for person and in the steps they can take
to ensure that caring does not jeopardise their own health. A
fortnight's training would seem to me to be a minimum.
February 2005
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