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Rare Genetic Disorders Questionaire
Complex Care Counselling
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Rare Genetic Disorders Questionaire
Rare Genetic Disorders Questionnaire
Who is completing this form?
Please tell us who is completing the form?
Person who wants counselling
Carer
Mother/Father
Family memeber
Social services
Other
Other
If one or more people are completing this form multi-select from the answers above.
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Aspirations?
Multi-select
Facilitating behaviour change
Enhancing coping skills
Facilitating your potential
Development of self-worth
Improving relationships
Reduce anger
Reduce negative feeling and thoughts
Explore broad set of issues
Reduce or remove addictions
Establish and maintain relationships
Remove or reduce negative cycles
Other
Other
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What Would You Like Help With?
Multi-Select Available
Addictions
Anger
Anxiety
Body Dysmorphia
Chronic Fatigue Syndrome
Chronic Pain
Depression
Dissociative Disorders
Health Anxiety
Fibromyalgia
OCD
Continued
Psychosis
Panic Disorder
Personality Disorder
Phobias
PTSD
Social Anxiety
Stress
Suicidal Thought
Self-Harm Thoughts
Other
Other
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Address & Contact
Person who would like counselling
Your Name?
*
PostCode?
*
Date of birth
*
Email
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Person Referring
The person completing the form
Your Name?
*
PostCode?
*
Telephone
Email
*
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GP Details
Surgery Name
Postcode
Dr Name (if Known)
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Home?
Relationship?
Single
Divorced
Live-In-Partner
Married
Children?
Yes
No
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Employment?
Employed?
Yes
No
Status
Full-Time
Part-Time
Are You Medically or Physically Able to Work?
Yes
No
Other
Other
Are You Retired?
Yes
No
Are you a student?
Yes
No
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Next
Rare Genetic Disorder Type?
Your RGD?
*
Ehlers-Danlos syndrome
Amyloidosis
Trisomy Mosaic
Adrenoleukodystrophy
Mitochondrial diseases
Lymphedema
Motor Neuropathy
Other
Type
Primary
Secondary
What?
About lymphoedema Lymphoedema is a chronic (long-term) condition that causes swelling in the body’s tissues. It can affect any part of the body, but usually develops in the arms or legs. Other symptoms of lymphoedema can include an aching, heavy feeling in affected body parts and difficulty moving them.
About – Motor Neuropathy Motor neuropathy refers to a type of nerve damage that primarily affects the motor nerves. These nerves are responsible for controlling the muscles and movements in the body. When these nerves are damaged, it leads to muscle weakness, cramps, spasms, and eventually muscle wasting and paralysis in severe cases.
Secondary lymphoedema – caused by damage to the lymphatic system or problems with the movement and drainage of fluid in the lymphatic system, often due to an infection, injury, cancer treatment, inflammation of the limb or a lack of limb movement
Primary lymphoedema – caused by faulty genes affecting the development of the lymphatic system; it can develop at any age, but usually occurs in early adulthood
Trisomy Mosaic Syndrome
Mosaic trisomy 8 is a rare genetic condition caused by an extra chromosome. Sometimes called trisomy 8 mosaicism, this condition develops well before birth.
It’s a result of an abnormality in how cells divide and replicate from the earliest stages of pregnancy. It’s a spontaneously occurring condition. It is not due to anything an expectant parent does during pregnancy.
Read or Write?
No problems
Cannot read
Can read
Cannot write
Can write
Other
Other
Multi-select
Are there any problems with memory?
No problems
Poor short term memory
Good short term memory
Poor long term memory
Good long term memory
Other
Other
Multi-select available
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Motor Neuropathy
Cause?
Diabetes
Autoimmune Diseases
Infections
Toxins and Medications
Genetic Disorders
Physical Injury
Other
Other
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More information
Can you tell us how you obtained Motor Neuropathy
Diabetes
Autoimmune Diseases
Infection
Toxins and Medications
Genetic Disorder
Physical Injury
Other
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Symptoms
Select Symptoms
Distinctive facial features
Small jaw and teeth
Arched or cleft palate
Short neck with extra skin folds
Distinctive body shape
Kidney problems
Heart abnormalities
Bent fingers and stiff joints
Missing or malformed kneecap
Spinal issues such as scoliosis
Eye conditions such as strabismus
Other
Other
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Symptoms lymphoedema
Select Symptoms
an aching, heavy feeling
difficulty with movement
repeated skin infections
the skin becoming hard and tight
folds developing in the skin
wart-like growths developing on the skin
a leakage of fluid through the skin
Other
Other
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Specific to you Symptoms
Can you give a little more information on your kidney condition
Can you give a little more information on your heart condition?
Can you give a little more information on your spinal condition?
Can you give a little more information on your eye condition?
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Specific to you Symptoms
Can you give more information on your condition?
your aching, heavy feeling
difficulty with movement
Repeated skin infections
the skin becoming hard and tight
folds developing in the skin
wart-like growths developing on the skin
leakage of fluid through the skin
Other
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Any, Additional Disabilities
Do you have any additional disabilities?
Autism
Epilepsy
Hearing Loss
Medical Illness
Sight Loss
Other
Other
Hearing Loss
Mild
Moderate
Severe
Deaf/BSL User
Other
Other
Sight Loss
Mild
Moderate
Severe
Blind
Other
Other
Epilepsy Type?
Absence
Clonic
Focal
Generalised
Tonic-Clonic
Other
Other
Absence
Absence seizures are more common in children than adults and can happen very frequently. During an absence a person becomes unconscious for a short time. They may look blank and stare, or their eyelids might flutter. They will not respond to what is happening around them. If they are walking they may carry on walking but will not be aware of what they are doing.
Clonic
Clonic seizures involve repeated rhythmical jerking movements of one side or part of the body or both sides (the whole body) depending on where the seizure starts. Seizures can start in one part of the brain (called focal motor) or affect both sides of the brain (called generalised clonic).
Focal
As the seizure progresses, a person can experience motor and non-motor symptoms. Some motor symptoms of focal seizures include: muscle twitching jerking spasms repeated movements, like clapping or chewing Non-motor symptoms do not affect how someone moves. However, they may cause confusion or changes in emotions. Some non-motor symptoms of focal seizures include: waves of hot or cold goosebumps lack of movement changes in emotions or thoughts
Generalised
Generalised onset seizures affect both sides of the brain at once and happen without warning. The person will be unconscious (except in myoclonic seizures), even if just for a few seconds and afterwards will not remember what happened during the seizure. Unknown onset seizures are sometimes used to describe a seizure if doctors are not sure where in the brain the seizure starts. This may happen if the person was asleep, alone or the seizure was not witnessed. If there is not enough information about a person’s seizure, or if it is unusual, doctors may call it an unclassified seizure.
Tonic Clonic
These are the seizures that most people think of as epilepsy. The person becomes unconscious their body goes stiff and if they are standing up they usually fall backwards. They jerk and shake as their muscles relax and tighten rhythmically.
Other Epilepsy
Best describe what other Epilepsy is
What medical illness?
What is the other?
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Mobility
Mobility Device?
*
Not Needed
Crutches
Supporting frame
Tilt-in-space
Manuel wheelchair
Standing wheelchair
Motorised wheelchair
Standing frame
Other
Other
Assistive Technology?
*
Not Needed
Electronic communication board
Low-tech communication board
Speech-generating device
Eye-tracking device
Typing and writing devices
Hearing Aids
Cochlear Implant
Other
Other
Multi-select
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Chronic Pain
Do you have daily chronic pain?
No
Yes
Other
Other
Do you have aches and pains in your joints or body?
No
Yes
Other
Other
Do you have muscle cramps & spasms?
No
Yes
Other
Other
Are the muscle cramps or spasms painful?
No
Yes
Other
Other
Do you favour one side of your body?
No
Yes
Other
Other
Can you feel unpleasantly hot or cold?
No
Yes
Other
Other
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Carer Questions?
Do you have a carer?
No
Yes
Other
Other
Is you carer?
Parent
Partner
Social Services
Other
Other
Carer hours?
1-4 hours daily
5 – 8 hours daily
Live-in
Assisted living at home
Assisted living (social services)
Other
Other
Level of Care?
Excellent care
Generally poor care
Multiple carers
Personality clash
Other
Other
Anything to add about carer?
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Daily Living
Do you have difficulty looking after your home, e.g., DIY, housework, cooking?
No
Yes
Cannot do
Do you have difficulty washing?
No
Yes
Cannot do
Do you have difficulty carrying bags of shopping?
No
Yes
Cannot do
Had difficulty dressing?
No
Yes
Cannot do
Do you have problems walking half a mile?
No
Yes
Carer Assistance
Had problems doing up buttons or shoelaces?
No
Yes
Carer assistance
Do you have problems walking 100 yards?
No
Yes
Cannot do
Do you have problems writing clearly?
No
Yes
Needed someone else to accompany you when you went out?
No
Yes
Sometimes
Do you have difficulty cutting up your food?
No
Yes
Carer assistance
Do you feel frightened or worried about falling over in public?
No
Yes
Sometimes
Do you have difficulty holding a drink without spilling it?
No
Yes
Sometimes
Do you have difficulty getting around in public?
No
Yes – poor accessibility
Yes – socially anxious
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Health
Medication?
None
Antidepressants
Antipsychotics
Anti-Anxiety
Heart Medication
Diabetes Medication
Mood Stabilisers
Stimulants
Other
Other
Do you feel anxious in public?
No
Yes
Sometimes
Any Other, Medical Issues?
Yes
No
Do you lack support in the ways you need from family or close friends
No
Yes
Sometimes
What? (multi-select)
Alzheimers
Arthritis
Asthma
Blood Pressure
Cancer
Infectious Disease
Lung Conditions
Diabetes
Heart Issues
Stroke
Other
Other
Do you feel ignored by people?
No
Yes
Sometimes
Anything to add Medically?
Do you lack support in the ways you need from your partner or spouse?
No
Yes
Sometimes
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Do you feel worried about people’s reactions to you?
No
Yes
Sometimes
Do you feel shamed in public?
No
Yes
Sometimes
Anxieties
Do you feel confined to the house more than you would like?
No
Yes
Sometimes
Do you feel you must conceal your disability from people
No
Yes
Sometimes
Obvious
Do you feel accessible services in public spaces hinder your ability to have a normal life?
No
Yes
Sometimes
Does disability affect your close personal relationships?
No
Yes
Sometimes
Do you feel frightened or worried about falling over in public?
No
Yes
Do you feel people try and take away your independence by over sympathising
No
Yes
Sometimes
Do you feel embarrassed in public?
No
Yes
Sometimes
Q1 – Little interest in doing things?
Never
Few Days
Most Days
Almost Every Day
Q2 – Feel down or depressed?
Never
Few Days
Most Days
Almost Every Day
Q3 -Have little sleep, or sleeping too much?
Never
Few Days
Most Days
Almost Every Day
Q4 -Feel tired or have little energy?
Never
Few Days
Most Days
Almost Every Day
Q5 – Poor appetite or overeating?
Never
Few Days
Most Days
Almost Every Day
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Q6 -Feel bad about yourself or let family down?
Never
Few Days
Most Days
Almost Every Day
Mental Health Questions based on “you have or do you”?
Q7 – Trouble concentrating on things?
Never
Few Days
Most Days
Almost Every Day
Q8 – Suicidal or self-harm thoughts?
Never
Few Days
Most Days
Almost Every Day
Q9 – Feel nervous, anxious or on edge?
Never
Few Days
Most Days
Almost Every Day
Q10 – Can you stop or control worrying?
Never
Few Days
Most Days
Almost Every Day
Q11 – Becoming easily annoyed or irritable?
Never
Few Days
Most Days
Almost Every Day
Q12 – Worry something awful might happen?
Never
Few Days
Most Days
Almost Every Day
Do you undereat?
No
Generally yes
Skip meals
Severely undereat
Bulimia traits
Other
Other
Do you overeat?
No
Generally yes
Severely overeat
Other
Other
Do you have hallucinations
No
Few days
Most days
Almost every day
Other
Other
Your hallucinations are:
Mild
Moderately disturbing
Very disturbing
Other
Other
Do you have flashbacks? (if applicable)
No
Few days
Most days
Almost every day
Other
Other
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Your flashbacks are:
Mild
Moderately disturbing
Very disturbing
Other
Other
General Questions
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Any, Past NHS Counselling?
*
Yes
No
Approx, how many years ago?
Approx, how many sessions?
Any other NHS sessions ?
No
Yes
Approx, how many years ago?
Approx, how many sessions?
NHS Past Counselling?
Any other NHS sessions??
No
Yes
Details on how many and year approx
Experience of NHS Counselling
Good
Did not understand my disability
Poor
Other
Other
What other counselling
No
Self-paid
Employer provided
School or university
Insurance
Profesional organisation
Other
Other
Could you add the approx year & how many sessions?
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Do you ever feel like life is not worth living?
No
Few Days
Most Days
Almost Every Days
Have you ever tried to commit suicide?
No
Yes
Other
Other
Any other counselling?
Approx how many years ago did you try to take your life?
How often do you have suicidal thoughts?
Few Days
Most Days
Almost Every Days
Do you know how to end your life?
No
Yes
Other
Other
Have you made plans to end your life?
No
Yes
Other
Other
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