Memorandum by Royal College of Nursing
(CC 21)
SUMMARY
— Whilst the RCN welcomes the proposed
national framework for eligibility criteria, we consider the scope
of the criteria to be only part of the problem. The criteria must
be altered to reflect psychological needs and must reflect the
level of nursing care required.
— Access to funding must be based on
a patient's need, and the process of determining eligibility should
focus on rehabilitation rather than a patient's dependency.
— There is a need to account for the
lack of choice exercised by patients in NHS continuing care services.
It is RCN members' experience that patients currently have limited
choice over access and provision of services.
— The definition of nursing in the
Health and Social Care Act 2001 needs to be reformed as the current
definition does not cover the time spent by a care assistant,
delegated by a registered nurse.
— The process of review and restitution
has addressed some financial concerns of patients, but there remains
a need to recognise the emotional impact on patients and carers,
as well as the excess burden on nursing staff.
— The link between NHS continuing care
and the top band of funded nursing should be re-examined to better
reflect consistency as the boundary is currently unclear.
1. INTRODUCTION
With a membership of over 370,000 registered
nurses, midwives, health visitors, nursing students, health care
assistants and nurse cadets, the Royal College of Nursing (RCN)
is the voice of nursing across the UK and the largest professional
union of nursing staff in the world. The RCN promotes patient
and nursing interests on a wide range of issues by working closely
with Government, the UK parliaments and other national and European
political institutions, trade unions, professional bodies and
voluntary organisations.
The RCN warmly welcomes the Committee's inquiry
into the issue of NHS continuing care. Many of our members work
directly with patients who have been denied access to funding
for NHS continuing care or experienced inequity as a result of
the assessment process. Our members work in a variety of settings
including care homes, hospitals and the community and experience
at first hand how distressing seeking funding for NHS continuing
care can be for both patients and their families. The RCN is conscious
of the close inter-relationship between NHS continuing care and
the registered nursing care contribution (funded nursing), and
for this reason some of our evidence relates to both policies.
2. THE WRITTEN
MINISTERIAL STATEMENT
ON NHS CONTINUING
CARE ISSUED
BY DR
STEPHEN LADYMAN
ON 9 DECEMBER
2004
2.1 The RCN understands the Minister's statement
to mean that he has recognised the need for further work to ensure
that those older people (and indeed other patient groups such
as children, those with learning difficulties, mental health needs
and young people with physical disabilities), who are eligible
for NHS continuing care receive it. We understand that the intention
is to achieve consistency and fairness in the development and
application of NHS continuing care criteria. Whilst the focus
is on NHS continuing care we hope this work will also address
the many problems with funded nursing, as outlined in our evidence.
We also understand that the Minister has acknowledged the need
to significantly improve the information available to patients
and their families to ensure that they understand the criteria
and how they are applied.
2.2 Additionally, we hope that the Minister's
statement will result in greater participation of clinicians in
the decision making process. For example the panels, which make
the final decision on a patient's eligibility for NHS continuing
care, should be made up of clinicians who have the appropriate
knowledge and skills to make informed decisions and cases should
be presented by the assessing clinician. At present many panel
members seem to be finance or commissioning directors.
3. HOW THE
CHANGES WILL
BUILD ON
THE WORK
ALREADY UNDERTAKEN
BY STRATEGIC
HEALTH AUTHORITIES
IN REVIEWING
CRITERIA FOR
NHS CONTINUING CARE
AND DEVELOPING
POLICIES
3.1 The RCN is pleased that there has been
recognition of the need for greater consistency and fairer access
to NHS continuing care and welcomes the move towards a proposed
national framework for eligibility criteria. We very much hope
that this will go some way towards addressing the current difficulties
experienced by patients in accessing funding for their care.
3.2 However the RCN believes that the scope
of the criteria is only part of the problem. If the criteria are
changed to reflect a national framework, access to NHS continuing
care will remain restricted for some because of the manner in
which the criteria are applied. In particular the criteria need
to reflect a much greater recognition of the needs associated
with emotional and psychological wellbeing. This particular issue
was highlighted in the Health Service Ombudsmans report in February
2003[2].
Currently the focus of the criteria for both continuing health
care and funded nursing is dominated by physical health needs.
Because of this many older people who have dementia or other mental
health conditions are unable to access funding as mental health
needs are often defined as personal care. The eligibility criteria
need to be reformed so as to reflect the true nature of care required.
3.3 Example: Mrs T was diagnosed with Alzheimer's
dementia. She had seriously impaired communication abilities and
was aggressive. She fell frequently, sometimes between three to
eight times a day. She hallucinated and had major problems in
terms of eating and drinking. She needed help with all normal
activities of daily living; she needed constant review of her
medication and was assessed as requiring continuing health care.
However this application was turned down by the continuing health
care panel. This case highlights the inequity which pervades the
system for those who have mental health needs. If the eligibility
criteria took into account mental health needs, we believe Mrs
T would have been eligible for NHS continuing care.
3.4 Similarly, the RCN believes that the
changes to continuing health care criteria will not resolve wider
problems around access to care, unless there is far greater agreement
about what constitutes health care and what constitutes nursing
care. Example Mrs C and Mrs E are both residents in the same primary
care trust. Both women are severely disabled by strokes with swallowing
difficulties. They were separately assessed as eligible for NHS
funded continuing care, to be delivered in their own home. In
Mrs C's case, a 24 hour package was delivered, with two carers
provided during the night and most of the day. In Mrs E's case,
carers provided four visits per day, plus a sitting service each
morning. Both Mrs E and Mrs C required similar levels of assistance
with turning and pressure relief at night yet one received two
carers and the other did not. Cases such as these are not uncommon
and reflect the confusion which exists around determining what
constitutes nursing care. Nurses report their increasing concern
and distress that patients with clear nursing needs are being
denied the care that they require due to the criteria used to
determine both continuing health care and funded nursing. As a
result this matter has now been referred for debate at RCN Congress
in April 2005.
3.6 Once a nursing assessment is carried
out to determine a patient's eligibility for NHS continuing care
funding, recommendations are made to a funding panel. RCN members
advise us that in some instances, panels are overturning recommendations
made by nursing staff because of local financial constraints.
Our members are concerned that access is being driven by budgetary
concerns rather than need which is both demoralising for staff
and upsetting for patients. The RCN has been advised by a local
practitioner that in one locality in the East of England social
services staff are advised not to apply for funding for their
clients as it is not available. Elsewhere, experienced clinicians
report that their clinical assessment is overturned by panels
with no explanation being offered to either the clinician or the
patient. The RCN strongly believes that a patient's need should
be the basis for determining eligibility.
3.7 Example: Mrs Jones is a general nursing
home resident funded by social services with NHS funded nursing
care. She has severe osteoporosis with curvature of the spine
exacerbated by radiation treatment given 30 years previously for
another condition. She experiences uncontrollable pain has TB,
angina, diverticulitis, a prolapsed uterus, a gastric ulcer and
glaucoma and a previously fractured hip. She was assessed by the
NHS funded nursing care team and a high determination for nursing
was recommended due to the complexity of the past medical history
and difficulties in delivering her nursing care. The trigger questions
for continuing health care indicated that continuing health care
funding was required. However her application was turned down
merely because the patient did not comply with her pain control
and therefore it was felt that continuing health care was not
required.
3.8 The RCN believes that the current process
for allocating funding for NHS continuing care does not reward
best nursing and therapy practice, a problem which will not be
addressed under the current proposals. At present the process
focuses on the patient's dependency and stability and as a result
fails to recognise the complexity of a patients condition. Instead
the focus should be on a rehabilitation/re enablement approach,
which seeks to maximise a patient's potential[3].
The RCN also believe that the process of funding fails to recognise
the positive contribution which expert care can have on a patient's
stability. In the interests of best practice this should be rectified
in the process for accessing NHS continuing care funding.
3.9 Example: Mr Smith, previously a long
stay patient in a psychiatric hospital, has chronic obstructive
airways disease, schizophrenia, frequently falls and has a history
of choking as he gulps his food. He also has episodes of destructive
and aggressive behaviours which it is thought are due to flashbacks
from his war experiences. The assessing nurse considered that
he should be in receipt of continuing health care funding due
to his extensive nursing needs. However this was turned down because
in the opinion of the panel: his episodes of aggression only lasted
for 15 to 30 minutes and his very complex care needs could be
met by a care assistant. If expert nursing is not available to
patients such as Mr Smith then their instability is likely to
increase.
3.10 Furthermore, a Department of Health
commissioned evaluation of funded nursing[4]
highlighted the potential for "added value" in terms
of prevention, treatment, and rehabilitation of residents, building
on improving relationships between care home staff and PCTs. Yet
in spite of this the focus for funding continues to driven by
the dependency of the patient.
Example: Mrs L was reviewed as requiring some
rehabilitation which included a proactive approach to seeking
solutions to her posture, positioning, eating and drinking and
stimulation in general. Previously Mrs L had been nursed in bed
for nearly a year and could not eat orally as she could not sit
upright to eat and drink. She was therefore fed by tube. She had
no physiotherapy as this was not provided to nursing homes and
the PCT would not accept responsibility for providing adequate
static seating at a cost of £1,000. Had the funding been
available, Mrs L would have been able to leave her bed, and eat
and drink in an upright position, thereby facilitating her rehabilitation.
4. WHETHER THE
REVIEW OF
PAST FUNDING
DECISIONS HAS
SUCCEEDED IN
ADDRESSING THE
NEEDS OF
PATIENTS WRONGLY
DENIED NHS FUNDING
FOR THEIR
LONG TERM
CARE
4.1 The RCN welcomed the retrospective review
of past funding decisions as an attempt to address the many difficulties
faced by patients. Whilst the review has partly addressed the
financial needs of those patients who were wrongly denied funding,
a number of other issues still need to be addressed.
4.2 The emotional and physical strain on
patients and their families engaged in trying to access funding
for NHS continuing care is for many, immeasurable. Nurses have
experienced significant distress when trying to explain to patients
and their families why funding is not available for services which
they believe to fall within the remit of long term nursing. The
recent panorama documentary[5]
gave powerful examples of patients who failed to be awarded continuing
health care funding and many nurses contacted the RCN to express
their concern and to share similar experiences.
4.3 The RCN believes that the ongoing process
of review should operate under an established system which can
ensure that patients' needs will be met. Primary Care Trusts have
different systems in place for carrying out continuing care assessments,
although most employ a team of nurses to administer both continuing
health care assessments and registered nursing determinations.
We have learnt from our members that in practice this can mean
that nurses have to work between 8 and 20 extra hours per week
to administer the system. This time is unpaid and often unacknowledged.
The result of the review and restitution process has been to significantly
increase nurses' workload and if patients' needs are to be adequately
addressed, proper systems for review, monitoring and responding
to changed needs must be resourced and put in place.
4.4 The level of demand for care home beds
remains very high, however market forces are reducing the number
of available beds for nursing care. The market has declined for
care homes due to the funding situation and beds are being taken
out of the market, despite the need for beds in some areas being
undiminished. The RCN conducted a Care Home Survey in 2004 and
found that a fifth of respondents were concerned that the care
home in which they worked may close due to financial pressures[6].
Similarly, we are aware that a major care provider in England
is struggling to keep their nursing provision available as they
are running at a loss for nursing services. In practice this means
that patients who have achieved restitution may not actually be
able to access care home services in their area.
4.4 The RCN considers that there is a disparity
between health and social care definitions of health and nursing
care needs which the review process has highlighted but not addressed.
Example: Mrs Brown has extensive pressure sores,
is incontinent of urine, has a urinary infection, is seriously
underweight, and is unable to drink or eat without help and supervision.
Social care staff assessed the patient as requiring social care
yet nurses assess the patient's needs to be nursing. The RCN believes
that such disparity is primarily caused by budgetary constraints,
but is exacerbated by the definition of nursing in the Health
and Social Care Act 2001. The Act requires that nursing which
is delegated be reconstructed as social care and subject to means
testing. As a result nurses and social workers face daily tensions
in defining their interventions and associated budgets.
5. WHAT FURTHER
DEVELOPMENTS ARE
REQUIRED TO
SUPPORT THE
IMPLEMENTATION OF
A NATIONAL
FRAMEWORK
5.1 The RCN believes there is an urgent
need to amend the definition of nursing as outlined in the Health
and Social Care Act 2001. The current definition does not cover
the time spent by a care assistant providing care which has been
delegated by a nurse. In practice this means that many patients
do not receive funding for care which has been delegated by registered
nurses. Such a process creates a false division in care and fails
to recognise the nursing accountability for such delegated care.
Client groups in other care settings do not have their nursing
defined by the contribution of the registered nurse only. In 1997
the RCN developed a nursing assessment tool for use with older
people[7].
This tool was offered to the Department for Health as a framework
to be used when assessing the need for long term nursing in both
continuing care and care home settings. The RCN believes that
this tool clearly defines nursing, reflects nursing needs and
offers a useful way forward in developing further work on what
constitutes nursing for older people who have long term care needs.
Use of such a tool would enable nurses to identify nursing needs
and achieve accepted best practice. By focusing on abilities rather
than dependency it would also assist in the maximisation of patient's
abilities.
5.2 The RCN believes it is essential that
investment in training and development is allocated for all health
care staff who come into contact with patients who may be eligible
for NHS continuing care and funded nursing. The Health Service
Ombudsman has also identified this as a priority and has recommended
that training and development is supported to "expand local
capacity and ensure that new continuing care cases are assessed
and decided properly and promptly"[8].
The process of accessing funding is not fully understood by many
health professionals, and widespread training would help to ensure
patients are given as much support and guidance as possible. It
is also imperative that this training emphasises shared values
between health and social care staff so that staff understand
the needs of patients and how they can best be met. Allied to
this, there is a need for Strategic Health Authorities and Primary
Care Trusts to enable nurses to work within their professional
code of conduct. At present nurses feel that they often have to
work within criteria which fail to recognise best practice and
are not in a patient's best interests.
5.3 The RCN believes that there is a need
to develop a new framework for the eligibility criteria themselves,
so as to ensure they reflect the level of nursing and therapy
care required. Currently, the threshold at which the criteria
become applicable is too high, meaning that patients with a high
level of dependency are only eligible for a low level of funding
for registered nursing. For example our members report that unless
patients need daily care from a medical consultant or their condition
is extremely unstable they fail to be awarded funding for continuing
health care. This is despite their condition and associated needs
being recognised by nurses as requiring intensive nursing care.
Patients requiring continuing health care should in the first
instance undergo a full multidisciplinary assessment upon which
any assessment for continuing health care should be based. The
reality is that many patients are still not receiving a full multidisciplinary
assessment.
5.4 Similarly there is a need for the eligibility
criteria themselves to be reformed so as to reflect a change in
emphasis to rehabilitation and re-enablement. Currently, the criteria
focus on the level of a patients' dependency. This creates a perverse
incentive whereby if a patient's condition improves, the level
of funding available decreases. Best practice in nursing older
people is based on a rehabilitation/re enablement approach to
care[9].
Criteria which emphasise rehabilitation and re enablement would
ensure that patients receive nursing and therapy services which
aim to promote abilities, enhance quality of life and in the longer
term may well result in the need for less care services.
5.5 Strategic Health Authorities and Primary
Care Trusts need to be enabled to achieve a cultural shift in
the way that they view access to NHS continuing care and funded
nursing. There is a need for a more global consideration of care
needs which explores the full potential of local provision beyond
a focus on clearing beds in acute hospital trusts. In this way
the current focus on resolving bed blocking might be viewed more
as a way of providing the best care for patients through providing
greater choice that is more patient focused. Currently the focus
on clearing beds means that the needs of patients are not the
key determinant for discharge.
5.6 The RCN believes there is also a need
to re-examine the link between funding for NHS continuing care
and the top band of funded nursing. Under the current system,
there is a lack of consistency and understanding about those needs
that trigger continuing health care and those that trigger the
top band of funded nursing. The boundary between continuing health
care and NHS funded nursing is unclear, which may be due to similar
terminology being used in both sets of criteria. The consequence
is that for patients whose needs place them on the boundary between
levels of care, there may be different interpretations between
assessor, patient or carer as to whether the patient is eligible
for NHS continuing care funding. Our members report that some
patients who have extensive nursing needs still do not receive
funding for NHS continuing care, nor do they attract the higher
band for funded nursing. It would appear that across England there
is a serious lack of consistency over which patients receive funded
nursing and which patients receive NHS continuing care.
5.7 RCN members believe there is a need
for the balance to be redressed in the system to account for the
lack of choice exercised in NHS continuing care. Eligibility criteria
must promote choice so that patients can access the continuing
health care they need in the location that is best suited to them.
This should include their own homes if they so choose. For instance,
current provision does not seem to include special seating so
that a patient can receive appropriate care. Some PCT's do not
accept responsibility for provision of seating which may be needed
in order to provide good postural support or a good position for
safe swallowing. This means that some patients have no choice
but to receive care in care homes so that they can access the
kind of seating that they need for health care. Similarly there
is a lack of consistency about the level of care patients who
are in receipt of funded nursing can access, as the care received
may not be holistic. Not only does the funding result in delegated
care being charged for but also many residents of care homes are
not receiving other services that they may require, eg physiotherapy,
speech therapy and occupational therapy. As a result patients
are being denied the opportunity to respond to rehabilitation
and an enhanced quality of life.
5.8 The current situation whereby care home
fees exceed the level of NHS continuing health care contributions
also needs to be addressed. In practice this means that the individual
pays a "top up" fee to cover the extra charge which
is unfair as it means that inequity still persists at the heart
of the system. There is an urgent need to resolve matters pertaining
to the funding of continuing health care. The true cost must be
reflected in the funding allocated to care homes so that they
can provide the care which is needed.
6. RECOMMENDATIONS
— The membership of continuing care
funding panels should include clinicians with the appropriate
knowledge and skills, to ensure decisions are made on the basis
of clinical need.
— Eligibility criteria for NHS continuing
care should be reformed so as to reflect a greater recognition
of the patients' emotional and psychological needs. In addition
the criteria should also be reformed so as to place a greater
emphasis on rehabilitation and re-enablement.
— The definition of nursing as outlined
in the Health and Social Care Act 2001should be amended so as
to include the care delegated by a nurse to a care assistant.
— Training and development should be
made available for all health care staff who come into contact
with patients who may be eligible for NHS continuing care.
— The link between funding for NHS
continuing care and the top band of funded nursing should be re-examined
in order to reduce the confusion which currently exists.
— Provision of NHS continuing care
services should be reformed so as to allow patients to exercise
a greater level of choice over access to and provision of services.
2 The Health Service Ombudsman Report on NHS funding
for long term care of older and disabled people, February 2003. Back
3
Wild D & Ford P (2001), "An Evaluation of the Registered
Nursing Care Contribution Tool for the determination of residents"
needs for registered nursing care when in Nursing Homes. Department
of Health, London. Back
4
Szczepura A, Davies C, Wild D, Johnston I, Biggerstaff D, Ford
P, Vinogradova Y. NHS Funded Nursing Care in Care Homes in England:
An Initial Evaluation. Centre for Health Services Studies, University
of Warwick, Coventry, UK. 2004. Back
5
BBC Panorama, "Fighting for Care", 18 July 2004. Back
6
RCN Care Home Survey 2004, "Impact of low fees for care homes
in the UK". Back
7
RCN (2004) Nursing Assessment and older people, a Royal College
of Nursing toolkit. Back
8
The Health Service Ombudsman for England, "NHS funding for
long term care, follow up report", December 2004. Back
9
Royal College of Nursing (2000) "Rehabilitating Older People". Back
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