Tag Archives: services

Do you want to see better services for people with neurodevelopmental conditions?

We are working with other charities to understand how we can better support children with brain conditions and their families and we need your help.

We want to understand what life is like for the people we represent. We want to learn about the realities of living with more than one neurodevelopmental condition (diagnosed or not).

Our partners in this project include Autistica, the Neurological Alliance, MQ, Tourettes Action, Afasic, Epilepsy Action and many more. We all want to make sure families are properly supported. Working together we have developed a survey to understand the reality of life with a neurodevelopmental condition. Our goal is to understand what support and services are making a difference and where there are gaps in the help families need.

The more responses we get, the more we will understand about how to improve the support families receive and how we should be targeting our work.

So if you want to see better services for people with neurodevelopmental conditions have your say here.  It would be great if you could also share it with your family, friends and other contacts.

Thank you. Together we can work wonders for children with brain conditions.




Professor Richard Hastings

Richard%20HastingsParents’ and service users’ experiences of challenging behaviour services

Affiliation: Centre for Educational Development, Appraisal and Research (CEDAR), University of Warwick

Biography: Richard Hastings is Professor of Psychology and Education and Cerebra Chair of Family Research in CEDAR at the University of Warwick. He carries out research on various topics in the field of learning disability and autism, including: psychological problems in children and adults with autism or learning disability, families, and educational interventions. Richard is a trustee for Mencap, the research advisor for Sibs (the UK charity for siblings of children with disabilities), and an external advisor for Ambitious about Autism.

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About Cerebra

Family relaxing togther

Supporting families in their everyday lives

Founded in 2001, Cerebra is a unique national charity that strives to improve the lives of children with neurological conditions, through research, information and direct, on-going support.

Living with neurological conditions can make life very hard, not just for the child, but for their family too. At Cerebra, with the help of our supporters, we aim to make it easier.

Our support services:

We offer:

  • information and advice on a number of topics, over the phone or through our website
  • face to face support through our network of Regional Officers who can help with form filling and letters, completion of the Disability Living Allowance form, meetings, specific local information and activities
  • a sleep service to give advice and support to families on a wide range of sleep issues
  • a free postal lending library for books and sensory equipment
  • an innovation centre who design bespoke equipment to meet family’s needs
  • a monthly e-newsletter full of informative articles and stories
  • workshops and other events across the UK.

Our research:

We sponsor research at six world leading university research departments which:

  • aims to understand the causes of cognitive, behavioural and emotional problems experienced by children with rare genetic disorders
  • helps families access their legal rights and entitlements to health ad social care
  • would allow doctors to define measures for early interventions that would improve the life chances of babies
  • aims to predict mums at risk of early delivery and prevent it from happening so that fewer babies need neonatal intensive care and do not suffer the complications of being born too early
  • Focuses on the wellbeing of the child and their parents, siblings and, potentially, grandparents
  • involves families affected by childhood disability in research to ensure research topics are relevant and important to families

The Information Standard

information-standard-member-logo-positive_graphic-onlyCerebra’s aim is to provide high quality health and social care information for the parents and carers of children aged 0-16 years with neurological conditions. Cerebra has been a certified member of the Information Standard since August 2013. The Information Standard is an independent scheme, supported by NHS England, to ensure only the highest quality health and social care information is produced. This means that our relevant products have been through the schemes rigorous quality control procedure. For more details on what it means to have achieved the Information Standard certification, visit:


Cerebra’s objectives are to:

  • Use only current, relevant, balanced and trustworthy sources of information and ensure they are clearly referenced
  • Inform parents and carers about different conditions and the issues surrounding these so that they have a better understanding
  • Empower parents and carers to make their own decisions and resolve problems and issues

Cerebra is responsible for the accuracy of the information produced. The Information Standard shall not be responsible for any inaccuracies or omissions in the information published on Cerebra’s website. Weblogs, forums and personal experience pages/videos are excluded from the scope of certification.

Who we help:

We help children 16 or under with a wide range of neurodevelopmental disorders and conditions.  The general areas we cover are listed below with a few examples of conditions that fall within the broader categories:

  • Cerebral Palsy
  • Autistic Spectrum Disorders
  • Developmental disorders like global developmental delay, dyspraxia and learning disabilities.
  • Seizure disorders such as Epilepsy, west syndrome, lennox gastaut syndrome and dravet syndrome.
  • ADHD
  • Traumatic Brain Injury like head injury and shaken baby syndrome.
  • Acquired Brain Injury due to infections like encephalitis and meningitis, stroke, brain tumours, hypoxic event or haemorrhage.
  • Down syndrome and other Chromosomal/Genetic conditions  – Some examples being Trisomy 13 (Patau syndrome) and 18 (Edward syndrome), Fragile X, Angelman syndrome, Prader-willi syndrome, Cornelia de Lange, Rett syndrome, Williams syndrome and chromosome deletion disorders.
  • Brain Malformation/Abnormality like Agenesis of the corpus callosum, Dandy Walker syndrome, Arnold Chiari malformation, lissencephaly, microcephaly and macrocephaly.
  • Degeneration of the brain – Cerebral atrophy and Periventricular Leukomalacia for example.
  • Hydrocephalus
  • Conditions caused in utero such as Foetal alcohol syndrome or as the result of some sort of toxin.

Meet our Senior Management Team

For more information on what we do please get in touch with us on 01267 244200 or enquiries@cerebra.org.uk


Finding Local Information

We take a look at some good ways of finding information on services and support in your area.

One of the hit-and-miss aspects of finding information is knowing that something exists, in order to search it out.  It is possible to miss out, at least for a while, on services, opportunities, equipment etc. because their existence has not yet come to light.  This article points to sources of information that either list what is available or lead to contacts with local people who will know.

Finding public services

Many city, county and district councils split what they publish, between visitors’ and residents’ information. A family with a child who has additional needs might want to consult both kinds, whether that is just for a visit or to put things in place for a new situation / area; broadly speaking, for both leisure / local highlights / informal activities and statutory / community services. https://www.gov.uk/find-your-local-council will find the contact details for a local authority in a county or city, however it can be overlooked that there are different kinds of councils, and more than one may cover the same area.

Smaller town and parish councils can be a source of useful local knowledge. An example comparing the type of information available is Patchway Town Council, which exists within the South Gloucestershire unitary authority (“unitary” indicating that it functions as both a county and a district council). Local authority departments may go under different titles but will include children’s services with children’s social services, education, adult social services, housing, planning, Disabled Facilities Grants, discretionary grants, trading standards, transport and disabled vehicle parking among others.

The local authority will cover some community health-related services, but this side of things will be NHS-based or linked to the NHS in some way. For example, equipment services are likely to cross over between district nurses linked to GP surgeries, and social services (although if you are just visiting an area and need some temporary equipment, the local branch of the Red Cross might be the place to start.) To find local health services, NHS Choices, gives some details and links to parts of the UK from “other NHS sites” at the bottom of the page.

All or most of the above will be very familiar to people with some experience, but to those who are new to it, it can seem like a maze.

A few other links relating to public services:

Local Family Information Services, which provide a range of information on services available to parents, including parents of disabled children.

NHS Choices services search, to find local health-related services.

Transferring to new services, including records, can often be assisted by the services you are moving from. Capability Scotland publish a guide for people moving to there with a disabled child, some of which could also be useful in other parts of the UK. A quick reference to all your child’s needs and existing services (such as a Personal Portfolio) can be a useful tool.

Transport information can be found at: Traveline.

Finding charities and other support

Good starting-points to get the lie of the land, as it were, are libraries (and librarians) – nearby ones can be found by entering a postcode or location name at: http://www.findalibrary.org.uk/#Start.

Tourist Information Centres are listed at: http://www.information-britain.co.uk/tic.cfm (in Northern Ireland, Visitor Information Centres, http://www.discovernorthernireland.com/Visitor-Information-Centres-VICs–A2216).

Voluntary services organisations are likely to know what charities and informal groups are active in an area: in England, these are the Councils for Voluntary Service (CVS), listed at: http://www.navca.org.uk/directory/home.aspx. Wales has County Voluntary Councils, listed at: http://www.wcva.org.uk/members-partners/county-voluntary-councils. In Northern Ireland, the NICVA lists the organisations at: http://www.nicva.org/members_a-z, and in Scotland, many voluntary organisations are listed by area at: http://www.iscotland.co.uk/local/charities-and-voluntary-organisations/, and the umbrella body is the SCVO.

Another source of information about carers’ services and support groups in England, searching by town or postcode, links from http://www.nhs.uk/CarersDirect/guide/parent-carers/Pages/Parentsupportgroups.aspx.

For finding private services and suppliers: http://www.thephonebook.bt.com/publisha.content/en/index.publisha# (the listings here include youth organisations and some local support groups under “community groups”). This is not to overlook the other types of directory, yellow pages etc.

For regional and national groups, and wider organisations and services that include local activities; Netmums, contains discussions with people who have already been involved with some of them.

Local offices of national charities are good at knowing what else there is in an area, the characteristics and the contacts. Both local authorities and voluntary services are likely to list them, or it may be a case of looking at the website of the national charity concerned. For example, we have Cerebra regional family support workers around the UK.

A note about moving to a new area in the UK

There are broadly two types of people in this; those who like to research and get a good picture of a place and what is available, and those who would rather identify one key service provider for their child, or one relevant parents’ group, and find out from them what else there is when they get there. Most people who are interested to read this article on the Internet probably lean more towards the research approach, and it has to be said that at least some research is a good idea, not only in terms of looking up information, but also in terms of following up that information – remembering the salutary case of a family with a child whose educational needs were not being met well where they were living and consideration was being given to a specialist residential placement a long way from home. The family wanted their child to continue to live at home, so they uprooted everything else in order to move to a county where there was a day-school that, on paper, appeared to cater for the needs. However they did this without asking the school and, having arrived there, they found that the school did not agree. Another thing that can happen with local information – or any information – is that a facility may have changed since it was last put on to the Internet, even by an official source. I found out myself, recently, that this even extends to bus timetables, entailing a long wait at the bus stop.

If there is a choice about what area to move to, Neighbourhood statistics, and a school finder, which includes Ofsted reports etc., may be of interest.

The charity Shelter provides a basic reminder list of things to consider when moving home.

Other local intelligence

Grants from charitable trusts are often tied to what geographical area you live in, even sometimes covering a small area such as a village. You can search for these by postcode and/or other criteria at http://www.turn2us.org.uk/default.aspx.

Three 21st-century resources that are useful when you need to know about a local environment, either for a visit or to move to the area, are satellite imagery, online versions of local newspapers and local radio stations that provide online listening facilities. Streetview, Google Earth or a route-finder, for example, can give a view of an area or postcode that indicates whether there is a safe garden / park for a child to move about outside, how near a place is to facilities, what kinds of roads there are, and other things. The newspapers and radio stations will give some idea of the flavour of an area, what’s on, and probably some specific information as well.

Going abroad

The government publishes a series of “Living in” guides, covering a number of countries, containing essential local information for people planning to move abroad.

If you are looking for a particularly specialised or very specific service for a child within an area, Cerebra’s regional office or the national helpline can advise on further sources for that information.