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Local family advice groups | Life limiting and Life threatening Conditions | National Organisations

LOCAL FAMILY ADVICE GROUPS

Contact a Family
Contact a Family is a national organisation which supports families who care for disabled children. The North East branch supports families by:

• answering enquiries from parents and professionals
• providing information on conditions and rare disorders
• providing details of national and local support groups
• running workshops for parents/carers and professionals
• supporting the development of local groups
• helping to raise the profile of parents' concerns
• working on local consultation issues
• providing a local volunteer representative scheme, who are parents of disabled children
• publishing a quarterly newsletter (download the newsletter by visiting the website)

In addition, Contact a Family nationally produces a wide range of publications and factsheets on a variety of issues affecting families. They also publish a directory of conditions and syndromes to provide information to families and professionals, which contains information about more than 1000 specific and rare syndromes.

For more information contact:

Contact a Family Main North East Office, The Dene Centre, Castle Farm Road, Gosforth, Newcastle upon Tyne, NE3 1PH
Tel & Fax: 0191 213 6300

E-mail northeast.office@cafamily.org.uk

Website: www.cafamily.org.uk/northeast

National free phone helpline for families 0808 808 3555 (Monday to Friday 10am-4pm)

Sunderland Carers' Centre
Sunderland Carers' Centre offer confidential information, advice and support to carers living in the City of Sunderland, including Washington, Houghton-le-Spring and Hetton-le-Hole including:

• support at meetings with social workers, consultants, psychiatrists etc
• running courses and support groups
• organising social activities for carers
• producing a range of publications including a free newsletter every two months

Click here to view their newsletters.

Two support groups of interest to parent carers of disabled children include:

• The Next Level Group (formerly the Parents Gripe Group): for parents/carers of children with behavioural difficulties caused by learning disabilities. The group meets on the first Monday of each month, at Sunderland Carers' Centre, between 10am and 12noon.
• Parent Carers Group: for parents/carers of children (under 18) with special needs and disabilities. The group meets on the second Thursday of each month at Sunderland Carers' Centre, between 10.30am and 12noon .

The Young Carers Group is for young people who care for a family member (including a brother or sister who is disabled). The group gives young carers the chance to meet new friends and try new things.

Sunderland Carers Centre is open Monday to Friday, 9am-5pm. If a carer is unable to go to the Carers Centre, a member of staff can usually arrange to visit them at home.

For more information, please contact:
Sunderland Carers Centre, 12 Toward Road, Sunderland, SR1 2QF

Tel: 0191 567 3232

Fax: 0191 567 8536

E-mail: info@sunderlandcarers.co.uk

Website: www.sunderland.nhs.uk/carers/index.htm

Autism-In-Mind (AIM)
Sunderland parents Carole and Terry Rutherford have two sons with a diagnosis of autism, they understand that living with autism can sometimes leave them and their sons feeling isolated and cut off from the real world. Many children with a diagnosis of autism now attend mainstream schools and parents rarely have the opportunity to meet up with other parents who understand the problems that they face in their daily lives. Carole and Terry know from firsthand experience what this feels like, and also how difficult it can be for our children with autism to mix and enjoy social activities and outings. Autism-in-Mind (AIM) is keen to hear from any families who feel isolated or need a listening ear. AIM has been up and running in Sunderland and Washington for 3 years and we now have around 100 families who attend our meetings and also our social activities. We hold meetings in Sunderland and Washington and also offer internet based support.

AIM would like to help improve the lives of families living in Sunderland by giving parents and their children the chance to work together to provide some out of school activities for the children, and support and information for their parents.

We enjoy our outings to the Fun Shack, the Cinema, we go bowling and also arrange trips out. We are aware that some children with autism do not like these activities and we are hoping to improve the range of activities that we can offer.

For further information please contact:

Tel: 0191 549 0898 (Carole and Terry Rutherford), please leave a short message and we will return your call.

E-mail: aim1voice@btinternet.com

Sunderland Parents Network

Do you have a child who has special educational needs (SEN)? Would you like to know where to get information, which will help you get the best support for your child? Or would you simply like to talk to other parents who have a child with special educational needs?

If your answer is yes to any of the above questions then welcome to the Sunderland Parent's Network. We are a group of parents who like you have a child with special educational needs.  We can offer support and information about special educational issues as well as explaining procedures and attending meetings with you.  We believe that children with special educational needs are entitled to an education that can fully meet their needs.

We issue a termly newsletter to parent/carers providing up-to-date information on special education issues and details of local and national events that you may be interested in. You can also visit our website.

For more information, contact:

Tel: 07986 611001.  Please leave your name, address and telephone number and we will get back to you.

E-mail: sundparentsnet@netscape.net

Website: www.sunderlandparentsnetwork.co.uk.

Mencap North East Family Adviser Service
The Family Adviser provides information, advice and support to learning disabled people and their families/carers. They can provide information about a wide range of issues including benefits, holidays, employment, education etc.

For more information contact:
Mencap, 20-21 Marquis Court, 10th Avenue, Team Valley, Gateshead, NE11 0RU.
Tel: 0191 487 0444

Website: http://www.mencap.org.uk

Sunderland Young People’s Counselling Service
The service, which is part of Sunderland Counselling Service, offers counselling and support to young people aged 0-16 who are living or going to school in Sunderland. Services offered include group, individual and outreach counselling which are done by appointment, while drop-in sessions are available.

The service is part of Sunderland anti-bullying strategy, and also offers a specialist service to children with life limiting and life threatening conditions. A range of communication techniques can be used, and appointments can happen in the home if necessary. Other family members can also receive counselling through Sunderland Counselling Service (see below).

There is an open referral system, so young people can refer themselves, or they can be referred by a family member or professional. There is a leaflet for young people (designed by young people) about the service, and general service information packs available on request.

For more information or to make a referral contact:

Young People’s Counselling Service, St Thomas’, Petersfield Road, Pennywell, Sunderland, SR4 9BB
Tel: 0191 534 0123.

Sunderland Counselling Service
A range of counselling services are offered to adults living in Sunderland, both on an individual basis and in groups. Adults can contact the service direct, or a professional can make a referral on your behalf. An initial appointment will be sent out and an assessment will be done to allow both client and counsellor to discuss whether counselling could benefit the person.

Contact the main number below for general enquiries, or the number for a specific issue:

• General enquiry: 0191 514 7007
• Bereavement and loss counselling service: 0191 514 7007
• Women’s service (rape and sexual abuse counselling): 0191 514 7007
• SAFE: advocacy support to adults with a learning disability: (0191) 514 7007

For more information contact:

Sunderland Counselling Services, 37 West Sunniside, Sunderland SR1 1BU

Tel: 0191 514 7007

Fax: 0191 510 3513

E-mail: office@sunderlandcounselling.org.uk

Disability North
Disability North provide a range of services including:

Information, advice and support on every aspect of independent living including benefits claims and appeals, mobility and access, rights to services, holidays and leisure, housing and adaptations, education and employment.

Independent Living Resource Centre: opportunity to talk over the buying of expensive equipment before making any decision, and possibly trying it out first.

Direct Payments Advice: information about the new way of buying assistance to meet your child’s needs.

WhizzKidz Children’s Mobility Centre: opportunity for children and young people to try out equipment and get advice and information about available equipment.

Resource area: open to the public Monday to Friday, 9am to 5pm, all welcome without an appointment to view the resources available.

For more information contact:

Disability North, Dene Centre, Castle Farm Road, Gosforth, Newcastle upon Tyne, NE3 1PH

Tel: 0191 284 0480
Fax: 0191 213 0910

Minicom: 0191 285 7261

E-mail: reception@disabilitynorth.org.uk

City of Sunderland Council of the Disabled (CSCD)
The Council of the Disabled promote the participation of disabled people in Sunderland. Services include Wearside Mobility, Shopmobility, Playschemes, and campaigning around access issues.

For more details, contact:

CSCD, 100 Norfolk Street, Sunderland, Tyne & Wear, SR1 1EA

Tel: 0191 514 3346

Fax: 0191 514 3663

ME (Myalgic Encephalopathy) North East
This charitable organisation works to offer support and advice to people with ME/CFS (Myalgic Encephalopathy/Chronic Fatigue Syndrome), to share information, promote awareness of the illness, to develop links with other local groups, to increase the number of support groups, to provide a central point of contact for groups and organisations, and to raise funds to support research. The Regional Young Peoples Group meets every other Monday between 6.30pm and 8.30pm in Chester-le-Street.

For more information contact Alison at

ME North East, Bullion Hall, South Approach, Chester-le-Street, DH2 2DW
Telephone/fax: 0191 389 2222

E-mail: info@menortheast.org

Website: www.menortheast.org

arcadea

arcadea aims to promote the artistic and cultural equality of disabled people in the North East region, serving Co. Durham, Northumberland, Tees Valley and Tyne & Wear. They aim to support, promote, develop and showcase disabled artists and to encourage and support the profiling of Disability Arts and Disability Culture. To find out more or to download their newsletters visit their website.

For more information contact:

arcadea

MEA House, Ellison Place, Newcastle upon Tyne, NE1 8XS
Voice/fax: 0191 222 0708   

Minicom: 0191 261 2238

Website: www.arcadea.org

Sunderland Family Communication Service
This organisation (part of the National Deaf Children’s Society) links up Deaf Family Communication Support Workers with families of deaf children for communication support in the home. This may include:

• Communication support including basic signing skills
• Insight into deafness and deaf awareness
• Regular contact at home
• Access to local and national advice and support
• Emphasis on support in the evenings and at weekends to involve all the family

Families living in Sunderland who have a deaf child aged 0-16 are eligible for their service. Referrals can be made by contacting the Service Co-ordinator at the address below:

Angie Beckett, Family Communication Service Co-ordinator, 27 Oak Road, Redcar, Redcar & Cleveland, TS10 3NT
Minicom: 01642 489534
Fax: 01642 489534
Mobile text only: 07966341023
E-mail: angie.beckett@ntlworld.com

Down’s Syndrome North East
Down’s Syndrome North East offer information and support to North East families whose child/children have Down’s Syndrome. This includes running information and fun events, linking families with each other and keeping parents up to date with regional and national information.

For more information contact:

DSNE, P.O. Box 185, Newcastle, NE12 7WP

Tel: 0870 765 2121

E-mail: Contact@DownsSyndromeNorthEast.org.uk .

Website: www.downssyndromenortheast.org.uk

LIMITING AND LIFE THREATENING CONDITIONS

When we describe somebody as having a life limiting or life threatening condition what do we mean? Different people may use the terms in different ways, and it is a subject which creates strong emotions in people. ‘Life limiting’ (also sometimes known life shortening) describes a condition for which there is no reasonable hope of a cure. Many of these conditions cause progressive deterioration, with the child becoming increasingly disabled, and because of this the child may die before they reach adulthood. A ‘life threatening’ condition is one where curative treatment may be possible but can fail.

Rainbow Trust Children's Charity
At Rainbow Trust Children’s Charity we provide family centred care for children aged birth to eighteen with life limiting and life threatening conditions, and terminal illness.

Practical and emotional support is offered from diagnosis through to and following possible bereavement, both within the family home and at our family respite centre in Hexham, Northumberland. Rainbow Trust makes no charge for its services.

A referral can be made by anybody involved with the child, provided the family agree, or the family can contact us direct and refer themselves.

To make a referral or for further information contact:
Rainbow Trust Children's Society, Forster House, Forster Business park, Finchale Road., Newton Hall, Durham, DH1 5HL
Tel: 0191 386 4400

24 hour helpline: 01372 453309
E-mail: enquiries@rainbowtrust.org.uk
Website: www.rainbowtrust.org.uk

Butterwick House
We provide care to children age 0 – 19 years with a life limiting condition, and their families, who come to enjoy some time with us. A place to have fun, play, be listened to and feel safe. Each family is offered about 14 nights of care a year. The stays are offered to the children by themselves or to the family to come and stay together. There is no financial charge to families using our service. We are currently accepting referrals from Sunderland, County Durham, Teesside and North Yorkshire. It is an open referral system. A direct referral is accepted from families themselves or from health/social care professionals.

We have many visitors through our doors and one of the most common comments is “It’s not what we thought it would be!” Within the house there is a multi-sensory room. This room can be set up to stimulate or relax. Sounds of laughter are often heard coming from the small pool. This can be enjoyed by all the family. Each bedroom opens out onto the multi-sensory garden.

              

This is the result of a garden makeover by GMTV and contains scented and tactile plants, two water features, wind chimes and much, much more.

We welcome conversations from families or professionals who may want more information on our service.

For more information, contact:

Butterwick House, Middlefield Road, Stockton-on-Tees, TS19 8XN
Tel. 01642 607748
E-mail: childrens@butterwick.org.uk
Website: www.butterwick.org.uk

St Oswald’s Children’s Unit
We currently provide our specialist over night short break service for children aged from birth to 18 years with a life limiting (shortening) condition and their families who live in Northumberland, Newcastle, Sunderland, North Tyneside, South Tyneside or Gateshead. Rather than St Oswald’s creating yet another assessment system for families, Health and Social Services will work together with families whose children need specialist short breaks, and a referral will be made in this way.

All children and families like and need regular breaks and a chance to have some time out and fun. Sometimes this means a family having a break together and sometimes children and young people choose to have a break on their own. Families are already enjoying the many facilities here, such as arts and crafts, cooking, games, videos and computers that are equipped with e-mail and Internet access. We have a sensory room and a splash pool and we also enable children and young people to go out into the local community to do activities if they want to. If you are living in Sunderland and have a child with a life limiting condition and you would like more information and an assessment for short breaks, then you can talk to: Services for Disabled Children Gilpin House, Blind Lane, Houghton-le-Spring, Sunderland, DH4 5HX Tel: 0191 566 2190 Fax: 0191 566 2191. E-mail: child.disability@ssd.sunderland.gov.uk

Sunderland Young People’s Counselling Service
A counselling service for children and young people with life limiting and life threatening conditions and their families is available in Sunderland. Click here, for more details.

Orchard Project
The Orchard Project is run by Barnardo's and supports children, young people and families who are facing issues around life-limiting illness, particularly cystic fibrosis, and bereavement. Bereavement work is undertaken in Newcastle and Northumberland. Work with children with life-limiting illnesses is done in all areas of the North East. Orchard is also developing services for, and working with, young carers living in Newcastle.

For more information contact:

Orchard, Orchard House, Buston Terrace, Jesmond, Newcastle upon Tyne, NE2 2JL
Tel: 0191 240 4813

E-mail: orchard.project@barnardos.org.uk

NATIONAL ORGANISATIONS

There are many organisations which offer information, advice and support to families with disabled children. A selection of the most well known ones can be found on the Useful Links page. Below are a selection of these which offer a specific service to families such as a helpline phone number etc.

National Autistic Society (NAS)
NAS are a national organisation set up to support people with Autism and Asperger syndrome, their families and the professionals who work with them.

NAS run a helpline between 10am-4pm, Monday-Friday, offering impartial, confidential information and advice to parents, carers, people with Autism or Asperger Syndrome and other family members.

For further information contact:
Autism Helpline, The National Autistic Society, 393 City Road, London, EC1V 1NG.
Tel: 0845 070 4004
Minicom: 0845 070 4003
E-mail: nas@nas.org.uk
Website: www.nas.org.uk

Action for Sick Children
This is a children’s healthcare charity specially formed to ensure that sick children always receive the highest standards of care possible. A helpline is available for any problem or query regarding your child’s healthcare, such as registering with a GP, when they go into hospital etc.

They also produce a series of information booklets for parents covering topics such as ‘what to do in an emergency’, ‘going to out-patients’, ‘helping children deal with pain’, and ‘when your child is sick’. Many of these can be downloaded from their website.

For further information contact:

Action for Sick Children, c/o National Children’s Bureau, 8 Wakley Street, London, EC1V 7QE
Tel: 020 7843 6444

Helpline: 020 7843 6444

Website: www.actionforsickchildren.org/

AFASIC
This is an organisation to help children and young people with speech and language impairments and their families. They organise summer schools and activity weeks/weekends, and workshops and conferences.

Afasic run a helpline between 11am and 2pm, Monday to Friday, for information about speech and language impairments and therapy, assessments, statements, the role of the LEA, the role of professionals, choosing a school for your child, benefits, etc.

More information can be found on their website or from the North East and Cumbria Development Officer: Janine Curd for information about local groups and contacts. The nearest local group is based in Cleveland.

Helpline: 0845 3 55 55 77

Tel: Janine Curd 01287 209 882

Website: http://www.clevelandafasic.org.uk

National Website: www.afasic.org.uk

National Asthma Campaign
Helps children with asthma in the following ways:
1) Provide a kids zone on the website for information, help and activities
2) Running PEAK holidays for children aged 6 to 17 with asthma
3) Campaigning for a national standard of asthma care at school and pre-school
4) Junior asthma club for children aged 4-12 to give children the information and confidence they need to understand and control their asthma.

They also offer services to schools, such as guidelines for setting up a good school asthma policy.

For more information, contact:

Asthma UK, Summit House, 70 Wilson Street, London, EC2A 2DB

Helpline: 0845 7 01 02 03
Tel: 020 7786 5000

Fax: 020 7704 0740

E-mail: info@asthma.org.uk
Website: www.asthma.org.uk

The Family Fund
This organisation gives financial help and provides information to families with a severely disabled or seriously ill child under the age of 16. Financial grants are given to families in relation to the child's care needs, for instance:

• holidays or leisure activities so everyone can have a break
• A washing machine or tumble drier because of constant bedwetting or getting dirty clothing
• bedding and clothing to cover the expense of wear and tear because of the child's disability
• driving lessons for the child's main carer if there is a car available

The Fund can help if the child's condition or disability is regarded as severe and if a family's income comes within the organisations guidelines. Families with a disabled child can make one application per year if they continue to meet the criteria. To apply, an application form can be completed online.  A form can also be requested by phone, fax or e-mail. A professional involved with the child can apply on the family's behalf with their permission.

The Family Fund also produce information sheets on a wide range of issues, including adaptations to housing, benefits, holidays, transport etc, which are available on their website.

Other resources produced by The Family Fund are:

• "Taking Care" a guide by parents for parents. Click here to download it (pdf) 783kb
• Your Life Your Future, a planning booklet for young people. Click here to download it 96.4kb
• After 16-whats new, a web-based guide to growing up and becoming an adult, click here to visit the web site.

For more information contact:

The Family Fund, PO Box 50, York, YO1 9ZX.
Tel: 0845 130 45 42 (if you need an interpreter, ring and tell them which language you require, and this will be arranged)
Fax: 01904 652625

Textphone: 01904 658085 (for people with a hearing impairment)
E-mail info@familyfundtrust.org.uk

Website: http://www.familyfundtrust.org.uk/.

Learning Disability Helpline 0808 8081111
This is a free, confidential service for anyone who wants information and advice on anything related to learning disability, including housing, education, money, and local services. Young people, adults, carers and professionals can all use the service, whatever the question they may have.

For more information contact:

Learning Disability Helpline, 4 Swan Courtyard, Coventry Road, Birmingham, B26 1BU
Tel: 0808 808 1111
Minicom: 0808 808 8181

Fax: 0121 707 3019
E-mail: help@mencap.org.uk

Unique (rare chromosome disorder support group)
This is a national group offering support to families with a child with a rare chromosome disorder, which is so rare that contact with support groups catering for more common disorders would not be appropriate. It aims to support families who feel as if they are the ‘only ones’ to be in this position, by linking them to other families whose children have the same disorder.

For more information contact:

Unique, PO Box 2189, Caterham, Surrey, CR3 5GN.
Tel: 01883 330766

E-mail: info@rarechromo.org,

Website: www.rarechromo.org

Cerebra (for brain injured children and young people)
Cerebra is an organisation which campaigns around issues relating to children with brain injury, and supports parents in caring for them. Cerebra estimate that one in four babies born every year in the UK has some form of neurological problem, which can manifest itself as cerebral palsy, epilepsy, learning difficulties, attention deficit, behavioural and emotional problems or developmental delay. Parent Support is Cerebra’s information, contact and support network for mums and dads, grandparents and other carers. Parent Support will try and answer all your questions, has a postal lending library, produces a regular newsletter, and organises events.

For more information contact:

Cerebra (Parent Support), FREEPOST SWC3360, Carmarthen, SA31 1ZY
Freephone: 0800 32 81 159

E-mail: info@cerebra.org.uk
Website: www.cerebra.org.uk

Challenging Behaviour Foundation
The Challenging Behaviour Foundation (CBF) is a charitable organisation that aims to improve the lives of people with learning disabilities and challenging behaviour, and their families and carers. Challenging Behaviour is defined as ‘ behaviour of such intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour which is likely to seriously limit or deny access to and use of ordinary community facilities or impair a child’s personal growth, development and family life’ (Mental Health Foundation, 1996).

CBF can support people through producing factsheets, providing information about other useful organisations, sharing resources, keeping people up to date with news and events, and offering support.

For more information contact:

The CBF, c/o Friends Meeting House, Northgate, Rochester, Kent, ME1 1LS

Tel: (01634) 838739

E-mail: info@thecbf.org.uk

Website: www.thecbf.org.uk

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