Q31f. The person’s additional disabilities and health issues are: Please specify
The following were listed:
Angleman’s syndrome
Anxiety
Arthritis
Autistism [sic]
Benign ethnic neutropenia, schizophrenia
Blind
Cerebral palsy
Challenging behaviour, incontinence
Chest deformity
Congenital achondroplasia
Dementia
Depression
Diabetes
Diabetic – insulin dependent and emotional personality
Double incontinence wheelchair user
Enlarged heart
Fragile X [syndrome]
Gout
Hearing impairment
Hole in heart
Hydrocephalus
Hypoplastic lung
Impaired vision
Left hemiplegia
Microcephaly [2x]
Moderate anxiety
Mowat–Wilson syndrome
No speech
Non verbal
OCD [obsessive-compulsive disorder]
Pan-hypopituitorism [sic]
Paranoid schizophrenia, hypothyroidism
Paraplegic wheelchair user – No use of legs
PEG
Pica
Poor communication
Predisposed to urine infections
Registered blind
Rubinstein–Taybi syndrome
Schizophrenia
Scoliosis
Spastic quadriplegia
Spinal problems affecting walking
Spine fusion
Spine stenosis
Staphylococcul [sic]
Titanium rods
Type 2 diabetes
Under active thyroid, cataracts in both eyes
Q32l. Other communication method: Please specify
The following were listed:
Degrees of ‘HAA’ sounds. High pitch if very distress to little whimpery sounds if in pain
Leads you to a particular object
Limited speech
Repeats what you say
Sign language BSL [British Sign Language]
Smiling or making loud high pitched noise
Q34. Please list up to 3 special needs or additional difficulties the person has
First additional need (27.3% left blank):
Anxiety
Anxious and agitated
Autism, needs to be explained to in a different way
Autistic tendancies [sic]
Behavioural issues – screams a lot. Difficult to understand why
Cannot talk but understands when somebody talking to [name]
Colostomy-bowel loops
Communicating the need for help
Communication
Communication skills
Communications – understanding complex information, needs to be delivered in basic terms and put in context for level of understanding e.g. visual
Crowded bay – too many people and not enough could understand her
Deaf
Diabetes
Difficulties to walk
Difficulty with communication with hospital staff – residential homes staff supported 24/7
Difficulty with movement as she is exhibiting stiffness
Dignity and privacy
Distressed by new environment
Eating/diet
Emotional due to death of close family members in [name of] hospital
Epilepsy
Extremely impatient; can’t wait in queue
Fussy eater. I was present at all times
Gout and staph problems
Hard of hearing
Having the LD [learning disabilities] team is a good thing to have
Hearing
Hoist
Incontinent
Is currently needing to be hoisted in and out of bed and onto a commode
Lack of understanding
Paraplegic wheelchair user
Medical intervention
Medication given PRN [according to need] for fluid balance ([medication] for diabetes insipidus) – hospital staff not involved as given by myself or carer
Mobility problems with walking
Needs assistance with personal care
Needs clear instructions
Needs ‘thinking’ time before answering a question. When this is not given she becomes upset and nervous (most people tried at least – some more consistently than others)
No verbal communication
Non mobile, uses wheelchair, sitting in/getting into wheelchair via hoist
PEG feed
Poor communication
Required a hoist. The staff did it with me as I was not insured to use this on their grounds
Short legs. This makes it difficult to get in and out of bed or off chairs
Speech and communication – not very well. The problems were not addressed to him
Understanding – communication
Very challenging behaviour
Vision problem
Visual impairment
Walking
Q34.1a How well did the hospital meet this need?
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| Response | Frequency | Percentage |
|---|
| Very well | 24 | 27.3 |
| Quite well | 18 | 20.5 |
| Not very well | 15 | 17.0 |
| Not at all | 5 | 5.7 |
| Missing | 26 | 29.5 |
| Total | 88 | 100.0 |
Second additional need (40.9% left blank):
A proper cup of tea. Very simple – staff didn’t make it properly which ruined her stay then
Anxiety
Anxious/agitated/scared
Back
Behaviour that is challenging
Blind
Can be aggressive/physically/towards people who was around
Cerebral palsy quadruple
Communicating with him from certain angles
Communication [2x]
Diabetes
Difficulties to talk
Down’s syndrome
Eating while lying on back and after op
Epilepsy
Epilepsy – due to medication not being at the correct levels, client spends a lot of the time dazed, sleepy and confused
Feeding: excellent red tray and jug
Has had constipation since being in hospital. Was prescribed suppository but these weren’t consistently given as prescribed
Having staff as she needs 24 hour care
He is very slow in everything
Hearing
Hearing impairment
Helping with meal times (choking hazard)
His eyesight is poor. Needs to be shown closely to recognise
In wheelchair
Mobility – undressing/dressing – if I wasn’t with her she would struggle
Needs routine
Non communicating apart from noises
Nonverbal
Not understanding procedure
People, the family did not want to, see [name]
Person will refuse to eat, drink, take medication
Personal care
Personality disorder. Confidence/rejection emotional behaviour if needs not understood or met on demand
Poor communication/understanding skills
Reading-writing
Requires full support to consume food
Rubinstein–Taybi syndrome
Scoliosis
Self-injurious behaviour
She reacts badly to change, particularly if she is not warned beforehand. She can become very distressed and is likely to always remember any particular incident or event
Uncontrolled reflexes (banging arms on bed sides)
Understanding – explaining in simple form
Understanding what is going to happen. Especially when upset
Unsteady to walk
Visually impaired
Will answer even if she hasn’t understood the question
Q34.1b How well did the hospital meet this need?
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| Response | Frequency | Percentage |
|---|
| Very well | 17 | 19.3 |
| Quite well | 15 | 17.0 |
| Not very well | 11 | 12.5 |
| Not at all | 6 | 6.8 |
| Missing | 39 | 44.3 |
| Total | 88 | 100.0 |
Third additional need (52.3% left blank):
24 hour care
Additional support from acute liaison nurse
Asthma
Clamping reflex with jaw (staff continually tried to use a mouth thermometer)
Communicating book/passport and his laptop communication aid
Communication
Communication – some nurses were very nice but some talked at her/over her. Didn’t like that
Diabetes poor management, needs support, waiting for food for hours causing distress. Cannot tell time or process passage of time very well
Fear of the dark
Got very nervous with tests, staff need to support all the way through the process
He can’t be on his own for a very long time
He could walk long distance at some time during attending the appointments
He understands more than he can express
Helping to maintain his personal hygiene
Left hemiplegia
Listening and understanding patients wants
Mild hearing problem
Missed messages from the doctors which made me angry
Mobility
Overall understanding of her learning disability
Person doesn’t like intrusive treatment, e.g. blood being taken
Personal care. I did not lift a finger. First class
Physical
Quadriplegic epilepsy
Refusing to eat
Requires own space e.g. own room due to dignity issues and challenging behaviour towards others
Returning to walk
Spine fusion, log rollover
Stubborn and un-cooperative at times
The need to take things slowly
Very sensitive skin. Although support workers consistently pointed this out when the wrong type of dressing was used the same type of dressing was used for a number of days
Vulnerable person
Walking
Wheelchair user
Q34.1c How well did the hospital meet this need?
View in own window
| Response | Frequency | Percentage |
|---|
| Very well | 15 | 17.0 |
| Quite well | 8 | 9.1 |
| Not very well | 9 | 10.2 |
| Not at all | 4 | 4.5 |
| Missing | 52 | 59.1 |
| Total | 88 | 100.0 |
