Download Hospital Admissions Survey Document

Improving the Experience of Hospital Admission for
People with Neurological Conditions:
Summary of Survey Results and Recommendations
In September 2009, the National Council for Palliative Care (NCPC), in conjunction with the
Multiple Sclerosis Society, Parkinson's UK and Motor Neurone Disease Association, carried out a
survey to find out more about the experiences of people with a neurological condition when
admitted to hospital. The aim of the survey was to inform the group‟s priorities for the coming year.
Due to the way the survey was carried out, it was not the group‟s intention to use the data to
provide detailed analysis or make definitive statements about people‟s experiences in hospitals as
a whole. Indeed the data collected is not sufficiently robust to allow for this. The respondents‟
answers do, however, build a significant qualitative picture of the care being received by this
group, and reveal several areas of concern. The aim of this document is to highlight those
concerns and to prompt further work to explore the issues raised.
Perhaps the most striking finding was that nearly two thirds of respondents (63%, n=361) were not
asked whether they had an advance care plan or advance decision to refuse treatment during their
stay in hospital. Also related to a perceived lack of communication, a quarter of respondents
reported that they felt rarely listened to or not at all by staff during the admission (25% n=190).
Similarly, many of the comments received reported a lack of understanding amongst hospital staff
about their neurological condition and the impact this can have on the care they ought to be
receiving when in hospital.
In line with the findings NCPC‟s Neurological Conditions Group recommended that acute trusts
take steps to ensure hospital staff are better equipped to deal with people with neurological
conditions approaching the end of life or with palliative care needs anytime after diagnosis. This
can be achieved by greater provision of training, particularly in regards to advance care planning
and communication, and cultivation of a better understanding of neurological conditions in general.
It is also a reminder of the importance of listening to the people in one‟s care, recognising that they
are often the true experts of their care and treating them with dignity throughout. This document
signposts to a practical checklist previously produced by the group, which may act as a helpful
prompt for ward staff when a person with a neurological condition is admitted into their care.
1
Background
Purpose of the survey
The survey was conceived of by NCPC‟s Neurological Conditions Group, which includes
representatives from the four charities who led on the survey, as well as clinicians working in the
field and people using the services. The group wanted to find out more about the experiences of
people with MS, Parkinson‟s and MND during their stay in hospital and use this information to
inform the group‟s future priorities and work.
The survey was hosted by the MS Society and disseminated to their membership and that of the
Parkinson's UK. Responses to this survey cover England only.
A selection of the questions were added to a separate national survey the MND Association were
carrying out, which went to people in England, N. Ireland and Wales.
Format of the survey
Participants were asked to describe the experience their last admission to hospital. This could
have been an „accident and emergency‟ or planned admission, or an admission brought on by the
participant‟s neurological condition or for another reason. Questions included:

whether the participant thought the admission was appropriate

the participant‟s experience of the hospital during their stay including:

how staff handled their medicine and equipment

whether their symptoms were assessed and discussed with them by staff

whether they felt listened to and their carers supported

whether staff asked whether they had a care plan in place

whether the participant was visited by a specialist nurse or neurologist during their stay and
whether their previous medical notes were available to hospital staff

the participant‟s experience upon being discharged
Response rate
90 people from Parkinson's UK responded to the survey, and the MS Society received 186
responses. A total of 170 people responded to the selection of questions included in the MNDA
survey.
Key findings
Most people reported that their admission to hospital was either fair (28%) or poor (27%, n=182).
There were also several areas of concern around lack of communication and dignity which need
further attention. Responses to the sections of the survey where participants were able to describe
the experiences in a free-form manner (which applied to the Parkinson‟s and MS versions of the
survey only) were particularly revealing, and so several extracts have been included for illustrative
purposes.
“I took a care plan,
supplied by the MND
association with me to
hospital to enable staff
to see my needs. The
only person to look at
this was the one who
admitted me.”
Communication about advance care plans and ADRTs
Perhaps the most striking result was that a significant amount people with
neurological conditions entering hospital were not asked whether they had
an advance care plan or advance decision to refuse treatment in place. This
accounted for 80% of people with multiple sclerosis (n=106), 68% of those
with Parkinson‟s disease (n=85) and 51% of those with motor neurone
disease (n=170).
Communication with the individual and across teams
“No one took into
consideration my
pre existing
condition”

25% of respondents felt rarely listened to or not at all by staff
during the admission (n=190)

40.5% felt there was not liaison between their neurology consultant
and ward staff during the admission (n=190). It should be noted
that this is in the context of 59.7% of all responses being related to
something other than the person‟s neurological condition (n=221). Nonetheless, it was
separately reported in the free-form section of the survey that that communication between
specialist teams and ward staff was often lacking and this had a detrimental effect of that
person‟s experience of hospital.

Although the sample sizes are small, there seems to be a link between people not being
asked whether they have an advance care plans/ ADRT and not seeing their neurological
specialist. In the MND survey, of the 18 respondents who reported being asked if they had
a care plan, 10 had seen a member of the MND team. This compared to only 13 of 86
respondents who were not asked about their plans.
“The fact that I had MS was not passed on from one team of nurses, junior doctors etc
to another which was concerning. They focused on my gall bladder surgery and didn‟t
really pay any attention to the fact that I had a neurological condition and how this
might be affected by surgery, a possible infection, heat, etc.”
Dignity and approach of professionals
In the Parkinson‟s and MS versions of the survey, respondents were asked
what was done well during their stay in hospital and what could have been
improved. Analysis of the free-form comments revealed that people
experienced:









A lack of a person-centred approach (n=58)
Poor understanding of the condition (n=52)
Having to fight for regular medication or self-mediation (n=38)
Poor communication between teams (n=33)
Feeling of being neglected (n=28)
Poor communication with individuals and their family/ friends (n=22)
Long delays in being seen by specialists (n=15)
Feeling more ill on discharge than on admission to hospital (n=14)
No help after discharge (n=14)
“It would have
been helpful to
know that I was
expected to self
medicate before
admission. This
would have made
everything less
stressful as we
were worrying
about medication.”
This suggests that often it is the approach and manner of the professionals by the person with a
neurological condition that can contribute to a positive experience of hospital, as well as the quality
of the medical care they receive. Being treated with dignity and as an individual who matters is
crucial across conditions at the end of life.
Another major issue is the poor understanding of the conditions in question. For people with
Parkinson‟s this mainly related to the right to self-medicate and receiving the
wrong medication or doses. In the case of the former, accurate timing and
“Care plan was
doses of medication are vital and in the latter, being able to self medicate,
prepared and
where appropriate, enables people with Parkinson‟s to get their medication on
handed to staff,
time, every time.
plus medication
times. Both were
ignored, leaving my
husband vulnerable
and his Parkinson's
unstable.”
People with MS also noted this issue in relation to disease modifying drugs,
muscle relaxants and pain relief drugs. Many noted that they had to fight for
their regular and prescribed level of medication. All of which may be of
interest when considering symptom management in conjunction with
palliative and end of life care.
“I felt that the vertigo should have been investigated since this led to
my falls. It would have been better to be able to self-medicate. The
staff did not understand the problems associated with Parkinson's.”
Support for family and carers
63.2% of respondents felt family and carers had been involved in the
discharge planning (n=190). Although 55.8% of respondents felt
there had not been support for family and carers after discharge
(n=106), 88.5% of all discharges were to the individual‟s home which
suggests the problem may have been more connected with the poor
level of communication between hospital and community services at
point of discharge.
“Staff should take
notice of carers as
they know more
about the patient
than anyone.”
Analysis of the MND survey suggests that there is a link between seeing a member of the
neurological team and getting support upon discharge. The sample group is small, but 43% of
those who saw a MND team member thought their family/carers had been offered support,
compared to only 21% of those who hadn‟t seen a MND team member.
“The doctor said my husband had a very nasty urine infection. I said I had
told staff this 3 times and he said 'we can't take notice of other people'. I had
been caring for 8 years and he had regular urine infections. Hospital staff
should listen to carers.”
Readmission
Across all responses, 13.2% of people were readmitted to hospital within 4 weeks with a problem
relating to their original admission (25 out of 190). It is possible that discharge planning was poor
for these people, but this cannot be concluded from the data alone.
“The understanding of the doctors
that I should be discharged at the
very earliest opportunity was
appreciated. They understood
that the ward staff could not look
after me as well as I am looked
after at home.”
Recommendations
NCPC‟s Neurological Conditions Group recommends that:




More training and education is provided for generalist staff on end of life care issues.
particularly the importance of advance care planning. People admitted to hospital with long
term conditions should be asked whether they have an advance care plan or advance
decision to refuse treatment as a matter of routine.
More training and education is provided for generalist staff about neurological conditions
generally, including associated symptoms and medications. Hospital staff should be
encouraged to seek advice from neurological specialists when in doubt.
Hospitals ensure that specialist neurological teams are alerted when people with
neurological conditions are admitted, and that people‟s requests to access their specialists
are responded to swiftly. The specialists should also be made available to the ward staff,
who can benefit from their expertise in relation to condition-specific concerns, for example
on symptoms and medications.
Teams ensure communication is joined up between people and staff, and specialists and
generalists. This includes sharing information around the existence of advance care plans
and ADRTs.

Hospital staff ensure people are involved in decision making about their care, listened to
and treated with dignity throughout their stay.

Systems should be in place to ensure appropriate care is available to people upon
discharge, including effective communication with community care, social services and
neurological key workers (e.g. specialist nurses) where appropriate.

Further robust data be gathered on the experiences of people approaching the end of life in
hospitals so that further work to improve this area of care can be carried out. The recently
launched National End of Life Care Intelligence Network, whose aim it is to collate data on
all areas of palliative care, may be an ideal body to gather such information.
In 2008 NCPC published in conjunction with the British Society of Rehabilitation Medicine and
Royal College of Nurses concise guidance on neurological conditions. The document, Long-term
neurological conditions: management at the interface between neurology, rehabilitation and
palliative care (Concise Guidance to Good Practice series, No 10), gives practical guidance
relevant to many of the above recommendations. In particular, it includes a checklist which
doctors, ward staff and other professionals can use on the admission of a person with a long-term
neurological condition to hospital (see below).
The guidance in full is available to download here: http://tiny.cc/LTNCguidance
Checklist for the management of patients with an LTNC
when admitted to a general hospital ward
REMEMBER:
Patients with LTNCs and their families or carers are often expert at managing the disease and medications.
They live with the consequences of the management decisions that are made on their behalf, so always
consider and respect their advice and wishes.
Prior to admission consider the following:

Is the admission necessary?
Is it appropriate, given the level of disability/prognosis?
Can the patient be managed as a day case or in the community?

Plan the admission/coordinate with the team caring for the patient.
On admission:



Inform the neurological/rehabilitation/palliative care team caring for the patient.
Obtain old notes.

Check medication and continue unless contraindicated (especially anti-epileptics and anti-Parkinsonian medication).

Check that the patient has been admitted with their equipment (hearing aids, communication aids, adapted
wheelchair) and that staff are capable of using it.

Check the patient‟s competence to make decisions regarding their care. Is there an advance directive (AD)?
Review in hospital:






Posture and spasticity management, especially with pain, infection, fractures. Neuro-physiotherapy review is often
helpful.

Pressure sores and management strategy to prevent these.

Anticoagulation prophylaxis to prevent deep vein thrombosis.

Bladder: is the patient continent? In retention?

Bowels: is the patient incontinent/constipated?
especially with altered diet/opiates.

Swallow: is this safe? Is the patient aspirating?

Nutrition: is this adequate? Is the patient able to feed themselves?

Respiratory capacity:
check and monitor vital capacity if compromised.

Cognition:
beware of an acute deterioration with illness, medication.

Depression:
triggered by hospitalisation/change in condition/pain.

Pain: is important. In addition to the acute problem, pain may be due to a combination of:
neuropathic pain (which may respond to anti-epileptics and tricyclics)
spasticity
musculoskeletal pain – pay careful attention to positioning.
If considering a procedure, consider once again:



Is this appropriate given the patient‟s underlying neurological condition and prognosis?
Does the patient have the capacity to consent – is there an AD?
Respiratory function – is there need for anaesthetic advice?
Prior to discharge:





Consider whether the arrangements at home are appropriate – did they trigger the admission?
Assess how the patient‟s discharge will affect the family and their ability to cope.
Review and re-start the care package – revise if necessary.
Inform the team that usually cares for the patient in hospital, in the community, or at home.
Arrange follow-up if necessary – try to coordinate this if the patient has difficulty accessing hospital.
Acknowledgements
This document was written by NCPC‟s policy team, with input from members of its Neurological
Conditions Group, with particular thanks to Carolin Seitz and Lynne Brown (MS Society), Sue
Smith (MNDA Association) and Anjuli Veall (Parkinson‟s UK).
NCPC is very grateful to the partner charities for hosting the survey and to the respondent‟s for
sharing their experiences.
About the charities
The National Council for Palliative Care (NCPC) is the umbrella charity for all those who are
involved in providing, commissioning and using hospice, palliative and end of life care services in
England, Wales & Northern Ireland. NCPC promotes the extension and improvement of hospice,
palliative and end of life care services for all people with life-threatening and life-limiting conditions.
It promotes palliative care in health and social care settings across all sectors to government,
national and local policy makers. For more information visit www.ncpc.org.uk, email
[email protected] or telephone 020 7697 1520. (Registered charity no. 1005671).
The Motor Neurone Disease Association wants to see a world free of motor neurone disease
(MND). The charity‟s mission is to fund and promote research to bring about an end to this
devastating disease. Until then, it will do all that it can to enable everyone with MND to receive the
best care, to achieve the highest quality of life possible, and to die with dignity. The MND
Association will also do all that it can to support the families and carers of people with MND. The
MND Association is the only national charity in England, Wales and Northern Ireland dedicated to
people with MND. (Registered charity no. 294354). For more information visit
www.mndassociation.org, email [email protected] or telephone 01604 250505
The MS Society is the UK‟s largest charity dedicated to supporting everyone whose life is touched
by MS. Multiple sclerosis (MS) is the most common disabling neurological disorder amongst young
adults and estimates suggest that around 100,000 people in the UK have MS. The MS Society
provides respite care, a freephone MS Helpline, grants for home adaptations and mobility aids,
education and training, specialist MS nurses and a wide range of information. Local branches
cater for people of all ages and interests and are run by people with direct experience of MS. The
MS Society funds around 80 vital MS research projects in the UK. For more information visit
www.mssociety.org.uk or phone 0208 4380700 or freephone 0808 800 8000 for the National MS
Helpline. (Registered charity no 207495 in England and Wales and no. SC016433 in Scotland).
Parkinson's UK is working to find a cure and approve life for everyone affected by Parkinson‟s.
The charity brings people with Parkinson‟s, their carers and families together via its network of
local groups, website and free confidential helpline. Specialist nurses, supporters and staff provide
information and training on every aspect of Parkinson‟s. As the UK‟s Parkinson‟s support and
research charity, Parkinson‟s UK is leading the work to find a cure, as well as campaigning to
change attitudes and demand better services. The charity‟s work is totally dependent on
donations. For more information call Parkinson‟s UK free on 0808 800 0303 (text relay on 0800
111 4204), visit www.parkinsons.org.uk or email [email protected]. (Registered charity no.
258197 in England and Wales and no. SC037554 in Scotland).