Frequently Asked Questions
Scope produces a number of free factsheets, covering therapies and other aspects of living with a disability.
If you have any questions not covered here, please call us free on 0808 800 3333 or email response@scope.org.uk.
The information given in these FAQs is for general guidance only. Action should not be undertaken without obtaining specific advice - please refer to our Terms of Use for further information. If you have a specific query, please contact Scope Response for assistance.
- What is cerebral palsy?
- What causes cerebral palsy?
- I've just been told my child is likely to have cerebral palsy – what's next?
- Does Scope work only with people with cerebral palsy?
- I want to work – how can Scope help?
- I seem to be getting worse. I thought cerebral palsy wasn't supposed to change?
- Where can I find out about specialist equipment for disabled people?
- What are Direct Payments?
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What is cerebral palsy?
Cerebral palsy is primarily a disorder of voluntary movement and co-ordination, due to a defect or lesion of the immature brain.
It is an umbrella term covering a group of non-progressive, though not unchanging, motor impairment conditions, which range from multiple and profound to barely detectable. There are three main types:
- Spastic cerebral palsy refers to increased muscle tone or hypertonia.
- Ataxic cerebral palsy refers to disordered movements characterised by short and jerky movements. Often muscle tone is normal or decreased.
- Dyskinetic (also known as athetoid) cerebral palsy usually comprises slow writhing movements where muscle tone fluctuates between increased and decreased tone.
What causes cerebral palsy?
See also Parent Information Leaflets.Sometimes there is no obvious single reason why someone has cerebral palsy. Causes can be multiple and complex. Studies suggest that cerebral palsy is due mostly to factors affecting the brain before birth.
It is commonly the result of one or more abnormalities in the brain, before growth and development are complete. Some of the factors associated with the incidence of cerebral palsy are low birth-weight or premature birth, multiple births, asphyxia (lack of oxygen), infection or a cerebral bleed. Possible causes also include: infection in the early part of pregnancy; infection or accident in the early years of a child's life and abnormal brain development. There may also be a genetic link, but this is quite rare.
^^ Back to topI've just been told my child is likely to have cerebral palsy – what's next?
Your child's paediatrician may consider your child is likely to have cerebral palsy or you've may have just left the hospital or child development centre with a diagnosis of cerebral palsy for your child. What happens next?
The time around diagnosis is often a difficult time for parents and families. Your next appointment with a consultant may not be for several months and you might want to talk to someone who has some knowledge of cerebral palsy. You can call 0808 800 33 33 in confidence and talk to one of our staff about your child and how s/he may be affected. They can explain more about the condition and answer some of the questions you may have.
Services vary enormously across the country. We would always advise talking to your Social Worker, Doctor, Health Visitor or Scope response worker about what is available in your area.
In general, physiotherapy may be the first thing arranged for your child. An occupational therapist might also become involved if your child needs special seating or equipment. If your child has problems with feeding, swallowing or speech, a referral to a speech and language therapist may be arranged.
Scope offers information and support, including a set of leaflets aimed at parents of newly diagnosed children.
We can also help you make contact with your Scope regional response workers, who work in the local community and can offer further support and advice, as well as put you in touch with local services.
Face 2 Face projects, where parents offer befriending and support to other parents, are operating in some areas. For more information, visit the Face 2 Face website on http://www.face2facenetwork.org.uk/.
See also the Scope's Early Years section at http://www.scope.org.uk/earlyyears/index.shtml.
^^ Back to topDoes Scope work only with people with cerebral palsy?
Scope is a national disability organisation whose focus is people with cerebral palsy (cp). We were set up 50 years ago to provide education facilities for young people with cerebral palsy when state services were poor or non-existent. Scope now has a wide range of services and is often the initial point of contact, for parents, professionals and carers. It provides information, support and practical help via national and local services. While specialising in information about cerebral palsy, Scope Response responds to enquiries on other impairments and will offer support, but may refer you to a more appropriate specialist agency.
Scope campaigns to ensure issues important to disabled people have a high national profile, by influencing social, political and environmental policies at local and national Government levels. Scope provides information and support services for people with a wide range of impairments, in order that disabled people can achieve equality.
^^ Back to topI want to work – how can Scope help?
Scope's Employment and Training Services offer a range of services from skills development to supporting disabled people into open employment. We support over 1,500 people across a wide range of employment, and work with over 750 employers.
Support varies from preparation for work schemes to personal development programmes, from vocational training to volunteering opportunities. Scope runs skills development centres and other projects aimed at increasing disabled people's opportunities.
Scope's Employment Services offer people a tailor-made package of support, including work/benefit calculations; job search; mentoring; mediation at time of crisis; career development and information about other organisations and services that can help.
^^ Back to topI seem to be getting worse. I thought cerebral palsy wasn't supposed to change?
In cerebral palsy, the brain impairment is non-progressive; this does not get worse. However, it is not necessarily the case that physical capacity and function will remain the same throughout an individual's lifetime. There can be maturational, developmental or aging changes that can affect an individual's physical ability.
For more information please refer to our factsheet, 'An Introduction to Ageing and Cerebral Palsy'.
^^ Back to topWhere can I find out about specialist equipment for disabled people?
As with any equipment, it is very important to have an assessment by an appropriate specialist (often an occupational therapist) in order that you obtain the most appropriate equipment to meet individual and specific need.
Below are two agencies which have specialist information on ranges of disability equipment.
Disabled Living Foundation gives practical, up-to-date, unbiased information and advice on disability equipment.
Tel: 0845 130 9177
Email: info@dlf.org.uk
Website: www.dlf.org.uk
Abilitynet is a specialist national charity computer assessment and information service and can supply specialised computer systems for disabled people.
Tel: 0800 269545
Email: enquiries@abilitynet.co.uk
Website: www.abilitynet.co.uk
What are Direct Payments?
Instead of receiving support services directly from local authorities, disabled people can opt to receive the equivalent amount in cash and buy their own support package. Direct payments allow a person who has been assessed as needing services to receive cash to arrange and pay for these services independently. You can have a combination of some services provided directly by Social Services and others arranged by yourself with direct payments. The vast majority of people assessed as needing services have a right to direct payments.
Direct payments enable you to choose how you organise your social care needs in a flexible way that suits you. They are not taken into account when calculating income for benefits and are not liable to income tax. However, users need to show their local authority that the money paid to them is being spent in accordance with their care plan.
Download a summary of Scope's 'The Direct Approach: Disabled people's experience of direct payments'.
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