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Rare Genetic Disorders Questionnaire
Confidentiality
Read Privacy Statement
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Yes
No
Privacy Statement
All information entered on this form is private and confidential. As a mental health service, we prioritise your privacy and the confidentiality of your personal and health information. The details you provide will only be used to support your care and treatment and will not be shared with any third parties without your explicit consent. Your trust is important to us, and we are committed to protecting your privacy in accordance with applicable privacy laws and professional standards.
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.
Counselling Type
Selection
Self-Paid
NHS Funded
Other
Other
NHS Funded
The NHS makes funding decisions on a case-by-case basis, and the average wait time is 12 weeks. While it can be shorter (8 weeks), it may also take longer, depending on your GP’s processing time. There are some regions in England and Wales that do not allow specialist counselling with DisabilityPlus. If this is the case we will let you know on return of this form
Self-Paid
Paying for counselling privately offers several potential advantages over NHS-funded counselling: Shorter waiting times: NHS counselling often involves waiting lists, sometimes for several months. Self-paid counselling typically offers appointments within seven working days. Confidentiality: When self-paying, we are bound by strict ethical codes regarding privacy. Unlike NHS counselling, where your GP must be informed, private therapy ensures your sessions remain private unless legally required to disclose (e.g., risk of harm). Session Frequency: NHS counselling often has a set number of sessions, whereas private therapy allows for more flexibility. You can have as many sessions as you feel you need, and adjust the frequency as your needs change. Session Fees: £180 for every 3 sessions.
Address & Contact
Person who would like counselling
Your Name?
*
PostCode?
*
Date of birth
*
Email
*
Person Referring
The person completing the form
Your Name?
*
PostCode?
*
Telephone
Email
*
Rare Genetic Disorder Type?
Your RGD?
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Ehlers-Danlos syndrome
Amyloidosis
Trisomy Mosaic
Adrenoleukodystrophy
FND
Mitochondrial diseases
Lymphedema
Motor Neuropathy
POTS
Wolfram Syndrome
Marinesco-Sjögren Syndrome
Other
Symptoms
Partial Hearing Loss
Deaf – use BSL
Deaf – Oral Communication
Diabetes mellitus
Optic atrophy
Diabetes insipidus
autonomic nervous system degeneration
neurodegeneration
Other
Other
Can you give more information on your RGD?
Any, Additional Disabilities
Do you have any additional disabilities?
No
ADHD (inattentive)
ADHD (hyper)
Autism (diagnosed)
Autism (self-diagnosed)
Epilepsy
Hearing Loss
Fibromyalgia
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
Histrionic
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?
Mobility & Cognition
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
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
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
If you are human, leave this field blank.
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