The organisations described below can assist with various aspects of managing a medical condition or completing procedures that are needed to care for somebody with a specific condition. Where the internet cannot be used to access the information detailed below, contact our freephone helpline on 0808 808 3555.
A range of useful addresses can be found in the Helpful Organisations entry.
Contact a Family publishes a guide 'Aids, equipment and adaptations' which gives extensive information about a wide range of services and suppliers useful for families of disabled children and adults.
Access to the full range of Contact a Family guides, parents, reports, newsletter and group action packs can be found at http://www.cafamily.org.uk/publications.html. You can subscribe to Contact a Family's e-newsletters at http://www.cafamily.org.uk/news/enewsletters.html
Artificial feeding
Artificial feeding
Many individuals and families have to use artificial nutrition therapy (enteral or parenteral). Parenteral nutrition is delivered directly into a vein (usually through the jugular veins). Enteral nutrition is delivered via tubes into the digestive system. Tubes can be inserted down the nose into the stomach (naso-gastric feeding), directly into the stomach (gastrostomy) or the small bowel (jejunostomy).
PINNT
http://www.pinnt.com
An enquiry form is available via the website.
PINNT and Half PINNT, the paediatric arm of PINNT, provide help and information on artificial feeding.
The British Association for Parenteral and Enteral Nutrition
Tel: 01527 457850
http://www.bapen.org.uk
This organisation provides information and articles for professionals.
Cochlear implants
Where people cannot benefit from conventional hearing aids, cochlear implants may be helpful in picking up incoming sounds and sending electrical pulses directly to the auditory nerve. However, such electronic devices cannot completely restore normal hearing.
CICS (Cochlear Implanted Children’s Support) Group
Representatives based on region (see website for contact numbers)
http://www.cicsgroup.org.uk
CICS is run by parents whose children have cochlear implants and offer their experience to provide contacts, information and support for other families before, during and after their child’s cochlear implant.
Colostomy
A colostomy is a surgical procedure in which the colon is cut and brought through the abdominal wall to create an artificial opening known as a ‘stoma’. This allows faeces to be collected in a bag called a colostomy bag, which is attached to the opening. The purpose of a colostomy, which may be temporary or permanent, is to allow faeces to bypass a damaged or diseased part of the colon.
Colostomy Association
Helpline: 0800 328 4257
Tel: 01189 391537
http://www.colostomyassociation.org.uk
The association offers support, reassurance and practical information to anyone who may be about to have, or already has a colostomy.
Ileostomy
Inflammatory bowel diseases such as Crohn’s disease and ulcerative colitis can sometimes cause such damage to the patient’s large intestine (colon) that it may be necessary for the surgeon to remove it entirely. With a Brooke ileostomy, the lower end of the small intestine (ileum) is brought out through the abdominal wall and the body’s waste matter is collected in an externally attached bag. Alternatively, the patient may be able to choose to have an internal pouch, which involves the construction of a reservoir from a section of the ileum.
IA® (the ileostomy and internal pouch support group)
Helpline: 0800 0184 724
Tel: 028 9332 4606
http://www.the-ia.org.uk
IA provides a visiting service and also supports individuals, including parents of children and young people.
Incontinence
Where there are structural, developmental or psychological difficulties, incontinence may arise. Faecal incontinence, describes the inability of an individual to control their bowels, whereas urinary incontinence describes the involuntary excretion of urine.
The Bladder and Bowel Foundation
Continence nurse helpline: 0845 345 0165
Tel: 01536 533255
http://www.bladderandbowelfoundation.org
The Foundation provides support and information to people with bladder and bowel problems and their carers.
ERIC (Education and Resources for Improving Childhood Continence)
Helpline: 0845 370 8008
Tel: 0117 960 3060
http://www.eric.org.uk
ERIC is dedicated to supporting children and young people, their families and health professionals to deal with continence issues. We provide information, confidential support, services and resources.
Limb abnormalities, acquired and congenital limb absence
Abnormalities with limbs may be congenital (where the child is born with the limb problem) or acquired (where a limb defect has occurred because of injury or illness). Both can have a profound effect on physical and emotional functioning of an individual.
steps
steps supports individuals and families with lower limb conditions. It can offer support and contacts for other conditions with musculoskeletal problems. It publishes a regular newsletter and has information available (see entry Lower Limb Abnormalities for contact details).
Reach Charity Limited
Reach Charity Limited supports families of children with upper limb conditions as well as adults. It offers a network of local branches, publishes a quarterly magazine and has information available. It provides insurance cover for the 'good arm' of children over two years of age (UK only) as an automatic benefit of membership (see entry Upper Limb Abnormalities for contact details).
Limbless Association
Helpline: 0800 644 0185
Tel: 01245 216670 or 01245 216671 or 01245 216672 or 01245 216674
http://www.limbless-association.org
The Limbless Association provides information, advice and support for people of all ages who are without one or more limbs. It has a nationwide network of volunteer visitors (within the UK) who are all amputees themselves, offering support and encouragement to prospective amputees, those with limb loss and their carers. They publish a quarterly newsletter and have a wide range of information available.
Pain management
Many conditions result in associated pain for the individual. This can have a huge impact on daily life affecting an individual’s ability to carry out everyday activities and rest and relax. Uncontrolled pain can also have a huge psychological impact.
Action for Sick Children
Helpline: 0800 0744 519
Tel: 01663 763004
http://www.actionforsickchildren.org
This organisation offers good information on injections and pain. Also covers other subjects relevant for children going into hospital.
Paediatric Pain Profile (PPP)
Tel: 01772 895148
http://www.ppprofile.org.uk
PPP is a pain assessment tool for children with severe and complex disability. Pages on the website describe the development and testing of the tool. The PPP can be downloaded from the website.
Pain Concern
Listening ear helpline: 0844 499 4676
Tel: 01875 614537
http://www.painconcern.org.uk
Pain Concern provides information and support for pain sufferers and those who care for them. The listening ear helpline provides an opportunity to talk to another pain sufferer.
British Pain Society
Tel: 020 7269 7840
http://www.britishpainsociety.org
The British Pain Society is a UK-wide multidisciplinary professional organisation that aims to promote education, training, research and development in all fields of pain. It has information leaflets on pain for patients and professionals.
Tracheostomy
A tracheostomy is performed where there is a temporary or permanent obstruction in the airway. An artificial opening is made in the trachea (windpipe) into which a tube is inserted. It is through this tube that the individual breathes.
ACT
ACT offers support and encouragement to families who care for a child with a Tracheostomy, together with contact with others where possible. It publishes a quarterly newsletter and has information available (see entry Tracheostomy for contact details).
Urostomy and other urinary diversions
When the function of the bladder is affected by nerve damage or specific disorders, such as abdominal exstrophies or bladder exstrophy (see entries), surgery can divert the urinary flow to an alternative site of output by means of an urostomy or other form of urinary diversion.
Urostomy Association
Tel: 01889 563191
http://www.uagbi.org
The Association supports those who are about to undergo or who have undergone surgery that results in a urinary diversion and carers of those who have had a urinary diversion. They offer a home or hospital visit service as well as providing a wide range of information.
Ventilation
Breathing difficulties may be associated with a number of conditions and long-term problems with breathing can have a large impact on an individual’s quality of life.
Breathe On
Tel: 01258 820715
Tel: 01258 820274
http://www.breatheon.org.uk
Breathe On provides information and support to the families and carers of young people who are life-dependent on mechanical breathing or long-term ventilation.
Visible difference
There is a vast array of causes of face and body differences in children and adults for which there are a number of organisations that can provide information, advice and help. These causes include trauma and birth defects/syndromes.
Let’s Face It
Let’s Face It offers support and advice to individuals and children with a facial disfigurement, their families and professional workers and linking with others where possible. It gives help in rebuilding lives and provides education for medical, nursing and health professionals. It publishes a newsletter three-times a year and has a wide range of information leaflets (see entry Facial Difference for contact details).
Changing Faces
Changing Faces provides information, support and advice to anyone with a disfigurement and their family. It has information and advice for employers and schools to promote awareness and equal opportunities. It publishes a twice-yearly newsletter (see entry Facial difference for contact details).
British Red Cross
Tel: 0844 871 11 11
http://www.redcross.org.uk
The British Red Cross aims to rebuild confidence by teaching the application of cover creams to disguise disfiguring skin conditions.
British Association of Skin Camouflage
Tel: 01254 703107
http://www.skin-camouflage.net
The British Association of Skin Camouflage promotes techniques of camouflage for the relief of those who need their confidence restored thereby improving their quality of life.
Information last updated November 2010.
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