The NHS Through The Eyes of a Disabled Person

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The NHS Through The Eyes of a Disabled Person

• Speaker
• Mary Laver

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The NHS

• May I firstly say that, in my opinion, I think
  the NHS is a wonderful organisation. Thank you
  all for working in the NHS because with out
  people like you the NHS would not be.

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The Aim Of This Talk

• Communication, listening and learning from each
  other.
• For you to ask any questions of a disabled person
  who uses your hospitals.
• To speak to a care worker about the caring of a
  disabled person at home.
• To help make you aware of the feeling and
  thoughts of a disabled person who enters your
  hospital.

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The Views Expressed

• Before I start, I would like to express, in the
  strongest possible terms, that the views
  expressed are mine and none else's. Other
  disabled people that attend your hospital may
  totally disagree with the comments I have made.
• The time this discussion should take is
  approximately 45 minis.

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What do we mean by the word Disability

• There are two definitions

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British Council of Organisations of Disabled
People defines Disability

•  
• Disability is created, not by a persons
  impairment, but by the disadvantage, or
  restriction of activity, caused by a society
  which takes little or no account of the person
  who has that impairment.

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The Disability Discrimination Act (1995) defines
Disability
  A physical or mental impairment which has a
substantial and long term adverse effect on a
persons ability to carry out normal day to day
activities.
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Disabled and going into hospital, how do I feel?

• Very scared. People are going to be totally
  responsible for my every day living.
• These people do not know me or my condition
  personally.
• They do not know the best way to move me.

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• They dont know how to move me to save causing me
  pain.
• They do not know the best way to put me in my
  wheelchair or on the commode.
• How to feed me.
• Put me comfortable at night.
• To name a few. I hope they will listen to me
  when I tell them how to do these things.

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So now you have this Disabled person on your
ward what next?
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Lets look at the problems I shall bring onto the
ward and how you may solve them.
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Fear

• When I go into hospital, which I do on a number
  of occasions, I am scared. What am I scared off?
  Not the treatment, the MRSA bug, but the nursing
  care I am to receive. Sounds a terrible thing to
  say. Why am I scared of the nursing care? I feel
  that due to pressure of time, I do not get the
  quality of care I used to.

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• Nurses need time to look after me, a lot of time,
  and they quite simply do not have it.
• Meals. I have to have these fed to me, again
  more valuable time that simply nursing staff do
  not have.
• Getting me up in the morning. I am nearly always
  the last to be washed and dressed, why? Because
  it takes 2 nurses and 1 1/2 to 2 hours to do
  this job properly.
• I have to talk them through the way I have to get
  washed and dressed.

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• I use a ladies bottle for weeing in. If I am out
  of my chair I have to be put back on my bed using
  the hoist to do this. This can take a lot of
  time and 2 nurses.
• Night time. Oh I hate the night time. Some night
  staff are not very happy when they have to do the
  little things to make me comfortable. They are
  always wanting to rush away. When I ring for
  help, usually for a weeit can take ages for them
  to get to me.pain in my tum is a result or
  worse, a wet bed. Not the nurses fault. I just
  need so much care.
• The chatter of the night staff keep me awake.
• They always seem to have loud shoes to walk in.

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Please Remember

• The person who knows more about handling their
  disability lives with it 24 hours per day. The
  disabled person Be guided by them. Be patient
  if a task is taking a long time.

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Equipment
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Expensive Electric Wheelchair.

• QuestionAre your staff familiar with moving an
  electric wheelchair? If not, why not? What
  should you be doing about it? Are you insured if
  you damage the persons chair. Mine cost 13000!
  I have no option but to come in my electric
  wheelchair so is it unfair that you dissolve your
  self from the responsibility of looking after it.

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• The one person who knows how to get in and out of
  their electric or manual wheelchair is the person
  in it. Be guided by them. I have found a lot of
  staff think they know better than me on this one.
  Wrong.

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Hoisting

• Hoisting can be scary and painful in the hands of
  someone who knows you. What about someone who
  does not know you?
• Remember. Ask the person who is being hoisted if
  there is a way to hoist them that is better for
  them. You will be surprised they may just well
  know more than you.
• On a number of occasions time and pain could have
  been avoided if I had being listened to.

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Amby Lift

• This piece of hospital equipment is both
  uncomfortable and scary if you are the patient
  sitting in it..
• When using this equipment always push your
  patient in front of you not pull them behind.
  They may well fall off and you will not notice
  them. ALWAYS have the wheels on when moving
  around the ward.

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Physical Help
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I Need Physical Help(That is an understatement)

• Yes I need help and lots of it. It takes 2 hours
  of nursing time with two nurses to get me up in
  the morning. Think of it 4 hours of nursing time
  each morning I am in the hospital just to get me
  out of bed!
• Think about that. Who knows the best way to give
  me that help? Me and my home carers.

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• Who is not in hospital with me to give that help,
  right, my home care workers. Why not, because
  they are paid for the job they do and the
  hospital will not employ the agency to send them
  in.
• Result. Pain, discomfort, lots of valuable time
  wasted. See where I am coming from?

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I Cannot Use My Hands

• I cannot use my hands, what does that entail?
• Feeding. I have to be fed. A night mare.
  Feeding me takes up a very lot of nursing time
  due to a swallowing problem. Now where is my home
  care worker ay!
• I have twice had a problem when a nurse giving me
  my lunch has been told I can feed myself and left
  me.

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• What happens when I need to summon help when I am
  in bed? The call button. I cannot press the
  normal call button and you do not have a easy
  touch one. What do I do, nothing but your staff
  have to waste time going over all the hospital to
  find one with an easy touch. Would it not be
  better to have such a device on the ward at all
  times?

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Equipment

• MRSA.
• Example of the equipment I will use while in
  hospital.
• Nurses call button
• Hoist/Sling
• Commode
• Bed and bed side table

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Which Of These Can Spread MRSA?

• All of Them
• Nurses call button. Have you given that one any
  thought? Does anyone clean the nurse call button
  ever?

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• Hoist. Nurses seem at most times to have not a
  clue how to use them. When I, a user of many
  years, try to advise them I am told to leave it
  upto them.
• Cleaning the hoist. Does it ever get cleaned. I
  have never seen this happen yet.

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Hoist Slings

• I worry when I am put into a hoist sling. Why?
  Because that sling will have been used on other
  patients, usually on bare skin, and not be washed
  afterwards. What a thought.
• Solution
• When I arrive on a ward I wish the sling I am to
  use be given to me clean, in a sealed wrapping
  and left with me all of the time during my stay
  for my use only.

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• Beds and Side Lockers
• I can assure you that beds and lockers are always
  not properly cleaned when they are vacated,
  Believe me, I have seen this happen on many
  occasions.

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Commode

• I have to use a commode for toileting and
  showers, well I used to until the MRSA scare now
  I bring my own.
• Why used to. Have you ever seen the commode
  cleaned after use? I have not.
• Cleaning the commode seems to be one of those
  jobs missed out.

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LanguageBeing Politically Correct

• Use of wrong language can deeply offend. Please
  remember that.

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So what is the right language?

• Wrong
• Handicapped /Cripple
• Blind
• Downs syndrome
• Deaf
• Wheelchair bound

• Right
• Disabled/physically impairment
• Sight impairment
• Person with a learning difficulty/impairment
• A person with an hearing impairment
• Wheelchair dependent

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Advice when speaking to a disabled person.

• The person who knows their disability the best is
  the one living with it 24/7 listen to them.
• When speaking to someone who is in a wheelchair,
  make eye contact with them by bending down at the
  knees.
• Dont shout. We are not deaf.

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• When we ask a question Do not give the answer to
  the person we are with unless indicated to do so.
• Please do not assume that because we have a
  speech impairment we are not very bright. We can
  understand what you are saying to us. Can you
  understand what we are saying to you?

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Confidentiality

• People with a disability may well not want to
  discus their medical history or any other
  personal matters with a nurse or doctor in the
  hearing of others on the ward. Agreed?
• Putting the curtains around the bed does not stop
  sound!

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• Ask the patient if they would like to go into a
  private room to fill in their medical details.
• If the patient has a speech impairment make
  arrangements for someone who can understand them
  to be present.
• Never pretend that you understand what is being
  said to you. Ask them to repeat what they said
  as many times as it takes.

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Tablets, The Giving Of

• This one is my favourite.
• I take with me into hospital my medi - pack.
• The rules of your hospital say that if a patient
  uses a medi - pack the patient must beable to
  give the tablets to themselves.
• I cannot physically do that and you will not
  accept my medi pack.
• Daft dont you think!

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To Sum Up

• I would suggest the following
• Be prepared before hand for the disabled person
  who is coming onto your ward.
• Have any special equipment they need at the
  ready.
• Have a sling clean and ready on their bed if
  needed.
• Above allListen to them and take note of what
  they say. They may make your life much easier.

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Home Care Worker

• A Home Care Worker should be used on the ward if
  it is in the best interest of the patient and
  staffing.
• That they should come in at agreed times.
• That they ..

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Miscellaneous

• Getting back onto the wardCan we have a call
  button outside wards at wheelchair height.
• Waiting areas. No wheelchair places.
• Ambulance waiting areas. No assistant when
  required with eating, drinking, loo ect. This is
  needed mainly for elderly people waiting on there
  own for an ambulance.
• Deaf people can be missed when called at the out
  -patience.
• Lumber puncher. Will you please NOT do these on
  the ward.

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Thats All Folks!
Mary Laver