Author:- Hilary Boone, Founder
Lincolnshire Post-Polio Network, UK.
Vice Chair of Lincolnshire Neurological Alliance.
hilary.boone@lincolnshirepostpolio.org.uk
www.lincolnshirepostpolio.org.uk
Online Library of over 100 articles.
Lincolnshire Post Polio Network
Presentation for PDSI Partnership Board 18.9.2009
1
Social Care Assessments - 1
• The Lincolnshire Neurological Alliance first raised concerns
regarding the wording of the now named Needs Assessment
Questionnaire, version 4. at the Partnership Board meeting in
December 2008.
• Our request for a consultation event has now been taken on board
with a meeting arranged for October 8th 2009. Poster and
registration forms are now available.
• We are raising serious concerns because this questionnaire
originally developed for people with a learning disability is now being
used for all categories, including physical and sensory impairment
and the elderly.
Lincolnshire Post Polio Network
Presentation for PDSI Partnership Board 18.9.2009
2
Social Care Assessments - 2
• We believe the current breakdown of items and wording of questions
needs revising to ensure that the eligible needs of the people being
assessed are transparent and equitable.
• The following expands similar information from 2003. “Councils…
may take their resources into account when deciding how best to
achieve someone’s agreed outcomes. However, this does not mean
that Councils can take decisions on the basis of resources alone.
• Once a Council has decided it is necessary to meet the eligible
needs of an individual, it is under a duty to provide sufficient support
to meet those needs.” FACS 14th July 2009.
Lincolnshire Post Polio Network
Presentation for PDSI Partnership Board 18.9.2009
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Adult Social Care
Needs Assessment Questionnaire
version 4. June 2009
• This questionnaire is produced by Lincolnshire County Council
and Lincolnshire Partnership NHS Foundation Trust as a
community care assessment tool to allow people who need social
care support to know quickly and simply whether they can expect
to get any money for this support, and if so, how much.
• This form is designed to assess how having support needs affects
your day-to-day life.
• You can complete this yourself or with help from people you trust
– your family, friends, carer, Adult Social Care worker, Care
Coordinator or people who know you well.
• For each question choose the answer which best describes you,
over the past twelve months to date; only one of either (a), (b), (c),
(d), (e) or (f).
Lincolnshire Post Polio Network
Presentation for PDSI Partnership Board 18.9.2009
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Before you answer
1.
These questions are about the help that you need on top of anything that
is done for you by
–
–
–
a family member
friend or
someone in the community
that you do not pay.
2.
Each answer attracts a score which converts to money – a Direct
Payment - for you to pay someone to do or help you do each task.
Lincolnshire Post Polio Network
Presentation for PDSI Partnership Board 18.9.2009
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Question 1.4
My practical needs around the house are addressed
This is about day-to-day life and coping in your home for example;
• shopping, cleaning, cooking, housework, doing your laundry, general
home maintenance,
• managing finances, paying bills, correspondence.
With the unpaid/informal support that I receive,
a
I manage all practical tasks around my home
All
b
I occasionally (when I am unwell) need additional help
with some of the things around my home.
Occasionally
some
c
I still need help about half the time (when I am unwell)
with some of the things around my home.
Half the time
some
d
I still need regular help with many things around my
home.
Regular help
many
e
I still need regular help with most, if not all, things
around my home.
Regular help
most if not all
Lincolnshire Post Polio Network
Presentation for PDSI Partnership Board 18.9.2009
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Exercise – How many minutes does it take you, or someone in your
household to do, or you pay someone to do, the following?
Day
Week
Month
Cleaning – taking this to mean hygienic cleaning of kitchen
and bathroom.
Cooking – preparing, cooking, serving and clearing up of
breakfast, lunch and dinner.
Housework – changing beds, cleaning rest of home.
Doing your laundry – includes finding, sorting, putting in
washer and taking out when done, hanging out to dry or
putting in dryer, bringing in or taking out of dryer, folding,
ironing and putting away.
General Home maintenance
Managing finances, paying bills and correspondence
Total time per month
Lincolnshire Post Polio Network
Presentation for PDSI Partnership Board 18.9.2009
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Points to consider
When you employ someone you either pay them to do a task for you or
you pay them for the time they are in your home or with you when
you are out.
Taking physical disability [but not exclusively] the needs of people are
varied and can change due to condition, loss of unpaid/informal
support and/or aging, etc.
It is not possible to breakdown each action of daily living for each
variation and to cost this.
It is possible to work out how long it takes to do each task, e.g. being
got up in the morning, doing the laundry etc.
We believe that it would save time and money and give everyone a true
understanding and costing of how the disabled person and their
family are managing if all needs were assessed and an additional
column added – this need is met by my unpaid/informal support.
This would/could be part of the Care Plan and would save considerable
time in the event of illness/emergency/change of circumstances.
Lincolnshire Post Polio Network
Presentation for PDSI Partnership Board 18.9.2009
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Points to consider for October 8th meeting.
1. Please look at the NAQ and ask your members which questions
they would have difficulty completing. If there is no choice that fits
their response then ask them to write what would fit their need.
2. We often do not realise what is involved in each action because
doing it is our ‘norm’. Then we break an arm, or someone who
helps us becomes ill and suddenly we find that far more is involved
than we realised.
3. No form could include all the options that might occur but it should
cover the majority.
4. If you are going to employ someone to help you with the tasks or
do some of them for you then you need to be clear yourself exactly
what actions are involved to complete that task.
5. We suggest that you ask your members to look at each category
and write down the individual tasks necessary for them to do, or
have the task done to or for them. [We have provided a breakdown
of a couple of the tasks from our disability point of view to give you
some idea.]
Lincolnshire Post Polio Network
Presentation for PDSI Partnership Board 18.9.2009
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Because medical information is being sought to corroborate
our reported social care needs for Direct Payments I
have added the following slides which demonstrate an
issue with medical assessments that I have been raising
for the last ten years.
Lincolnshire Post Polio Network
Presentation for PDSI Partnership Board 18.9.2009
10
• Many members of disability support groups report similar issues of
some of their reported symptoms not being corroborated during
testing, e.g. new weakness, inability to do actions of daily living like
they used to.
• Many report the rounds of hospital departments trying to get a
diagnosis with many unproductive appointments wasting NHS
money.
• I can speak for Polio Survivors but know from my work with the
Lincolnshire Neurological Alliance over 11 years that our
experiences are seen across the board with other neurological
conditions and in other counties.
• We have to research our condition and go back with more
information for re-assessment in a different way that will corroborate
what we are reporting. I have done this for leg weakness, eye
movement muscle weakness, arm weakness, swallowing and am
now trying to get my respiratory insufficiency correctly recorded.
• Some forms of testing need revising to ensure that appointments are
productive
• Lincolnshire NHS Research have now taken this on board and
research will start on the 28th September 2009.
Lincolnshire Post Polio Network
Presentation for PDSI Partnership Board 18.9.2009
11
Assessing reported muscle weakness
• Manual muscle testing (MMT) is performed to assess the
strength of muscles during isolated movements.
• Each muscle group is tested in order and graded from
0, no movement to 5, normal strength.
• Example. Arm strength
– Grip my hand,
– Pull against me,
– Push against me.
• Financial constraints limit the time available for testing in
NHS appointments. Therefore the tester will usually only
test the area where weakness is being reported, and
usually only test each action a single time.
Lincolnshire Post Polio Network
Presentation for PDSI Partnership Board 18.9.2009
12
Neuromuscular Condition Assessments
Polio Survivors – and others with similar neuromuscular conditions often report to their respective support groups that results of
tests following assessment using:Manual Muscle Testing
Lung Function Tests and Sleep Studies
Swallowing tests.
resulted in the following or similar statements…..
‘virtually normal’ or
‘nothing found’ or
‘you are o.k. for now but we will see you again next year’
They cannot understand why their reported symptoms were not
found and they become increasingly frustrated and stressed as
their pain/fatigue and loss of ability continues.
Something must be happening but what….
Lincolnshire Post Polio Network
Presentation for PDSI Partnership Board 18.9.2009
13
Manual Muscle Testing
Has the level of the reported symptom being adequately assessed?
Arms - Lift Item and Sustain
Straight Leg Raise Repeats
6
6
5
5
4
4
3
L eft L eg
Rig h t L eg
3
2
2
1
1
0
0
Manual Muscle Testing done a single time
L eft Arm
Rig h t Arm
did not pick up weakness
Lincolnshire Post Polio Network
Presentation for PDSI Partnership Board 18.9.2009
14
Self assessment will give you more information.
• People need to critically look at how they do each action
of daily living.
• Record any changes.
• List those where change has occurred starting with the
one that demonstrates the most change.
• Ask for assessment of the action, and reason why you
are now having to do this action differently.
– Explain… I used to be able to do stairs two at a time till five
years ago. A few months after this became impossible I realised I
was now going up each step right foot first. A few months later I
had to stop half way and rest. Now I have to pull myself up using
the banister rail. What is happening to my body to cause this?
Lincolnshire Post Polio Network
Presentation for PDSI Partnership Board 18.9.2009
15
Phrasing Questions 1
Can you get up a flight of stairs?
Can you walk?
Can you get yourself a meal?
I am a Polio Survivor
I have never
admitted defeat and I
am not going to start
now.
Yes
Yes
Yes
Lincolnshire Post Polio Network
Presentation for PDSI Partnership Board 18.9.2009
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Phrasing Questions 2
Change ‘CAN’ to ‘HOW DO’ and give us permission to tell it like it really is.
Can HOW DO you get up a flight of stairs?
Can HOW DO you walk?
Can HOW DO you get yourself a meal?
Well, I have to go one step at a time pulling
myself up with my right arm, it exhausts me.
I use crutches and swing my legs through.
I buy mostly prepared foods now as
I can’t stand for long, my arms are weaker.
Mostly frozen wait for the ‘DING’ food.
Lincolnshire Post Polio Network
Presentation for PDSI Partnership Board 18.9.2009
17
MANUAL MUSCLE TESTING – CONFIRMING STATEMENTS
Lauro S. Halstead MD - May 2002 - Director of Post-Polio Program
National Rehabilitation Hospital, Washington DC, USA.
If done only a single time, it can give an erroneous idea of the true muscle
strength and endurance.
Fred Maynard, M.D. - May 2002 - Marquette, Michigan, USA
President Board of Directors, Post Polio Health International.
"You have done a brilliant job of describing a real problem for polio survivors
and professionals that is, the limitations of the Manual Muscle Testing”
Sharrard WJW. Muscle recovery in poliomyelitis.
J. Bone Joint Surg (BR) 1955;37:63-9
“muscle grades of 3 were given to individuals with 85% denervation of the
muscles”
Manual Muscle Strength Testing of the Distal Muscles. Luiese Lynch
“It does not measure the ability of the muscle to function as part of a
movement pattern”
Bohannon RW, Corrigan D. Percept Mot Skills 2000; 90:747-50
“found that manual muscle tests of grade 5 had enormous variation in force, up
to 86% of all quantitatively measured forces”
Lincolnshire Post Polio Network
Presentation for PDSI Partnership Board 18.9.2009
18
Acquiring a disability brings lifestyle changes.
Comments from people with neurological conditions.
Becoming disabled brings many lifestyle changes which are stressful and take time to
accept.
Seeking a diagnosis for symptoms can take months if not years and even when we get
one there may be no finances to support any treatment and often we have to raise
funds to pay for aids and equipment.
If employed and have to give up work there can be a considerable drop in finance. E.g. My
salary dropped from eleven hundred pounds a month to ‘the government has decided
that you need £46.50 a week to live on’ [1995]
Filling out the endless forms is difficult and repeatedly we have to record how little money
we now have. Seeing it in black and white again and again is very stressful.
Applying to Social Services for help is not easy. It can take months to get through the
system. Some report it is less stressful and detrimental to health to struggle than go
through this.
We can no longer pop out on a whim, we have to plan in advance.
We have to employ people to come into our home and do many of the tasks that we used
to do.
We have to lower our standards.
Weekends and Bank Holidays are no longer looked forward to, they are just another day.
Expectations of what we were going to do when we retire just disappear. In fact what we
expected to happen when we got really old is coming to meet us head on.
We see our partners and family members position in life change, e.g. wife to full time carer,
daughter can no longer just pop round for a chat because now there will be a list of
things that need doing.
Lincolnshire Post Polio Network
Presentation for PDSI Partnership Board 18.9.2009
19
In 2003 I showed my daughter my presentation for a Conference
She said ‘Add this Mum’,
These are not only your problems, They are mine as well,
As you have got worse, things are more difficult at home for me
You cannot do the things you used to do with your family and friends and
the frustration that you suffer is shared by us as well
There is so much to do in your life, my life and our house each day
that it is not possible for me to fit it all in
There are a lot of things that you are upset about
not being able to do at this age
This also applies to me, I am 27 and I still live at home… woopey do…
There are life experiences that I wanted to have
not living in Lincoln, working abroad and travelling… etc.
Do we ensure we allow our family to tell it like it really is?
Lincolnshire Post Polio Network
Presentation for PDSI Partnership Board 18.9.2009
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