Lincolnshire Post-Polio Network

1. Assessments Issues being raised by and for people with physical and sensory impairments and the elderly. Author:- Hilary Boone, Founder Lincolnshire Post-Polio Network, UK. Vice Chair of Lincolnshire Neurological Alliance. hilary.boone@lincolnshirepostpolio.org.uk Lincolnshire Post-Polio Network www.lincolnshirepostpolio.org.uk Online Library of over 100 articles. Lincolnshire Post Polio Network Presentation for PDSI Partnership Board 18.9.2009

2. 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

3. 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

4. Adult Social CareNeeds Assessment Questionnaireversion 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

5. Before you answer • 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. • 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

6. 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. Lincolnshire Post Polio Network Presentation for PDSI Partnership Board 18.9.2009

7. Exercise – How many minutes does it take you, or someone in your household to do, or you pay someone to do, the following? Lincolnshire Post Polio Network Presentation for PDSI Partnership Board 18.9.2009

8. 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

9. Points to consider for October 8th meeting. • 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. • 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. • No form could include all the options that might occur but it should cover the majority. • 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. • 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

10. 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

11. 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

12. 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

13. 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

14. Manual Muscle Testing Has the level of the reported symptom being adequately assessed? Manual Muscle Testing done a single time did not pick up weakness Lincolnshire Post Polio Network Presentation for PDSI Partnership Board 18.9.2009

15. 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

16. Phrasing Questions 1 I am a Polio Survivor I have never admitted defeat and I am not going to start now. Can you get up a flight of stairs? Can you walk? Can you get yourself a meal? Yes Yes Yes Lincolnshire Post Polio Network Presentation for PDSI Partnership Board 18.9.2009

17. 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

18. 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 thatmanual 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

19. 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

20. 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