Frequently asked questions (FAQ)

Below are a sample of questions disabled young people and their parents/carers may ask, and a guide as to who may be able to answer these.

Q.1:   My child has been given a diagnosis and I would like more information about it. Where can I find this?
A:   The person who gave you this diagnosis will be best placed to talk you through what this means. There are national organisations who are set up to support families with disabled children, and this includes providing information about specific conditions. Two well known organisations are

Contact a Family:
Contact a Family have an on-line database of information about more than a thousand conditions and disorders.

UNIQUE
This organisation provides support for families with a child with a rare condition or disorder.

There are national organisations which specialise in supporting people with specific conditions and their carers. Below are some of the well known ones:

Autism & Asperger syndrome:   Autism is a lifelong developmental disability that affects the way a person communicates and relates to people. Asperger syndrome is a form of autism. A number of traits of autism are common to Asperger syndrome including difficulty in social relationships, difficulty in communicating, limitations in imagination and creative play. For more information visit the National Autistic Society

Down’s syndrome is a genetic condition caused by the presence of an extra chromosome. This means that your child may be slower to reach his/her milestones and will have a certain degree of learning difficulty, but most children with Down’s syndrome do learn to do most of the things other children do, just at a slower rate. For more information visit the Down's Syndrome Association or their North East branch.

Deaf/Hearing impairment:  There are several national organisations for people who are deaf or have a hearing impairment. These can be found on the links page of this site.  You may also wish to contact Sunderland Sensory Impairment Team on (0191) 566 2330; Minicom: (0191) 553 6353 and Sunderland Deaf Society (0191) 510 0579; Minicom: (0191) 520 3818

Visual impairment/Blind/Partially sighted:  There are several national organisations for people who are blind, partially sighted or have a visual impairment. These can be found on the links page of this site. You may also wish to contact Sunderland Sensory Impairment Team on (0191) 566 2330; Minicom: (0191) 553 6353 and Sunderland branch of Royal Society for the Blind (0191) 567 3939

Deaf blind/Dual sensory loss:  There are several national organisations for people who are deaf blind or have dual sensory loss. These can be found on the links page of this site. You may also wish to contact Sunderland Sensory Impairment Team on (0191) 566 2330; Minicom: (0191) 553 6353.

Cerebral palsy:  This is a physical impairment that affects movement, which may be mild or more severe. There are three main types which cause different difficulties, such as muscles becoming stiff and weak, unwanted movements and problems with balance. SCOPE is the national support and information agency, and they have a local branch, Tel: 0191 565 9206.

Learning disability:  Learning disability describes particular difficulties a person may have. This could include having more difficulties than other people their own age with understanding, learning, remembering new things, and applying existing knowledge to a new situation. As a result, this may lead to difficulties in areas such as communication, self care and awareness of health and safety. A learning disability is present from childhood, rather than a problem which is acquired later. A person’s learning disability may be described as mild, moderate, severe or profound, depending on how much it affects a person’s ability to live the kind of life other non-disabled people of the same age may expect. The learning disability is only a small part of what makes the person who they are. More information can be found on the Mencap website.

Spina bifida & Hydrocephalus:  Spina Bifida is a fault in the spinal column where one or more of the bones in the spine (vertebrae) do not form properly causing damage to the central nervous system. Hydrocephalus is when fluid is produced in the four spaces in the brain (ventricles) and is unable to drain away into the bloodstream. ASBAH is the national support and information organisation.

Epilepsy:  This is the second most common neurological condition after migraine. People with epilepsy are prone to recurrent seizures (fits). A seizure is when the messages in the brain get scrambled and the disturbed brain activity triggers a seizure. More information can be found at Epilepsy Action’s website

Cystic fibrosis:  This is the most common life-threatening inherited disease. It is a genetic disease which affects a number of organs in the body, in particular the lungs and pancreas, by clogging them with thick mucus. More information can be found at the Cystic Fibrosis Trust website. The local support group can be contacted on (0191) 512 0548 or (0191) 496 0098

Muscular dystrophy and neuromuscular disorders: Muscular Dystrophies are a group of disorders caused by a genetic abnormality which cause progressive weakness. They come within the larger category of neuromuscular disorders. These affect the nerves which pass messages from the brain to the spinal cord, the muscles and the junction between each nerve and muscle. More information can be found at Muscular Dystrophy Campaign website.

The Information Directory within this website will also provide information relevant to people with all the conditions listed above and more.

Children's Social Care:

The Complaints Manager will be happy to listen to what you have to say and will try to sort things out.

For more information, contact:-
Complaints Manager, Children's Social Care, FREEPOST NEA 12146, Independent Living Centre, Claymere Road, Leechmere Industrial Estate, Sunderland, SR2 9TS.  (This is a freepost address so no stamp is needed)

Tel: 0191 566 1470

Fax: 0191 566 2185

Email: Comments@ssd.sunderland.gov.uk

A leaflet explaining the Children's Services complaints procedure is available by calling (0191) 566 1832.

Complaints about anything related to your child at school should be directed in the first instance to the school staff you usually deal with.

Sunderland Teaching Primary Care Trust:

People can get information and support about making a complaint about any aspect of a service from the Patient Advice and Liaison Service (PALS). They can be contacted on Tel: 0800 7312 326.

City Hospitals NHS Trust:

For more information, contact:

The Chief Executive of the Trust, City Hospitals NHS Trust, Sunderland Royal Hospital, Trust Headquarters, Kayll Road, Sunderland, SR4 7TP.

Tel: (0191) 565 6256

A leaflet explaining the City Hospitals complaints procedure is available by calling the Complaints Department: Tel: (0191) 5656256 extension 41234

Information and support is also available from PALS: see below.

South of Tyne and Wearside NHS Trust:

For more information, contact:

The Chief Executive of the Trust, South of Tyne and Wearside NHS Trust, Cherry Knowle Hospital, Ryhope, Sunderland, SR2 0NB
Tel: (0191) 5656256 extension 49409

Information and support is also available from PALS: see below.

Patient Advice and Liaison Service (PALS):

PALS focuses on improving the service to NHS patients, by offering advice and support to patients, families and carers, providing information about NHS services, listening to concerns, suggestions or queries, and helping sort out problems quickly on your behalf. PALS act independently when handling patient and family concerns, liasing with staff, managers and other relevant organisations, to negotiate prompt solutions.

For more information contact:

Tel: 0800 7312 326, Monday to Friday 9am to 4 pm .

Agencies also welcome other compliments or comments, so don’t wait until you have a complaint to let them know what you think. You can use the contacts above to make any comments you have about services you or your child have received.

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