In the course of the management of many of the disorders described in the Contact a Family Directory of Specific Conditions, Rare Disorders and UK Family Support Groups, various procedures and management programmes are used. For some of these there are organisations which can provide further information.
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 Web: http://www.cafamily.org.uk/publications.html. You can subscribe to Contact a Family's eNewsletters at Web: http://www.cafamily.org.uk/whatsnew.html
Artificial feeding
Many individuals and families have to use artificial nutrition therapy (enteral or parenteral). Parenteral Nutrition is nutrition delivered directly into a main vein near to the heart. Enteral Nutrition refers to nutrition delivered via tubes into the digestive system. Tubes can inserted down the nose into the stomach (Naso-gastric feeding) or directly into the stomach (Gastrostomy) or small bowel (Jejunostomy; this is also called a Percutaneous Endoscopic Jejunostomy: PEJ).
Association of young people with ME
Web: http://www.ayme.org.uk/article.php?sid=10&id=164 Very good information on tube feeding.
PINNT (Patients on Parenteral or Enteral Feeding)
PO Box 3126, Christchurch BH23 2XS
e-mail: PINNT@dial.pipex.com
Web: http://www.pinnt.com
PINNT covers enteral feeding - nasogastric; gastrostomy and jejunostomy - and feeding and with parenteral nutrition (intravenous feeding). PINNT and Half PINNT, the paediatric arm of PINNT, provide help and information when a decision on any of these types of feeding is made.
The British Association for Parenteral and Enteral Nutrition
Web: http://www.bapen.org.uk
Provides information and articles for professionals.
Bone Marrow Transplantation Units
Great Ormond Street Hospital
London WC1N 3JH
Tel: 020 7813 7862 PALS service
Web: http://www.ich.ucl.ac.uk
The Bone Marrow Transplant Unit at Great Ormond Street Hospital (GOSH) treats children with Blood, Immunodeficiency, Metabolic disorders and Juvenile Idiopathic Arthritis. GOSH has one of the largest BMT centres in the world for treating children with immunodeficiencies.
Bristol Royal Hospital for Children
Paul O'Gorman Building, Upper Maudlin Street, Bristol BS2 8BJ
Tel: 0117 342 8461
Web: http://www.ubht.nhs.uk/bch
The Bristol Royal Hospital for Children has the largest paediatric Bone Marrow Transplantation Unit in the UK and takes international referrals. The conditions treated include blood disorders, solid tumour and genetic metabolic disorders.
Newcastle General Hospital
Westgate Road, Newcastle upon Tyne NE4 6BE
Tel: 0191 256 3460
Web: http://www.bubblefoundation.org.uk
The Bone Marrow Transplant Unit at Newcastle General Hospital treats babies and children with immunodeficiency disorders, solid tumours and Juvenile Idiopathic Arthritis.
Challenging Behaviour
Many children with a range of disorders display challenging behaviour.
Challenging Behaviour Foundation
The Old Courthouse, New Road Avenue, Chatham ME4 6BE
Tel: 01634 838739
Fax: 01634 828588
e-mail: info@thecbf.org.uk
Web: http://www.thecbf.org.uk
The Challenging Behaviour Foundation produces free information leaflets on various aspects of challenging behaviour such as physical interventions, equipment and safety, self injurious behaviour and a booklist for parents. An information pack is available on request (4 x 1st class stamps appreciated towards costs) For individual information sheets, please send SAE or visit the CBF website.
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 nerves. However, such electronic devices cannot completely restore normal hearing.
CICS Group
PO Box 28843, London SW13 0WY
e-mail: info@cicsgroup.org.uk
Web: http://www.cicsgroup.org.uk
CICS is a voluntary service run by parents whose deaf children have cochlear implants. The Group provides contact, information and support for families whose deaf children already have a cochlear implant and for those who are undergoing assessment or wish to find out more about the procedure.
Colostomy
A colostomy is a surgically created opening into the colon - through the abdomen. The purpose of a colostomy, which may be temporary or permanent, is to allow stool to bypass a damaged or diseased part of the colon.
Colostomy Association
PO Box 8017, Reading RG6 9DF
Tel: 0800 587 6744 Helpline
Tel: 0118 986 7597
Fax: 0118 956 9095
e-mail: cass@colosomyassociation.org.uk
Web: http://www.colostomyassociation.org.uk
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 who has ulcerative colitis may be able to choose to have an internal pouch, which involves the construction of a reservoir from a section of ileum. Someone who has a pouch does not need an external bag. People who have Crohn's disease cannot usually have an internal pouch.
ia (the Ileostomy and Internal Pouch Support Group) Peverill House, 1 - 5 Mill Road, Ballyclare BT39 9DR
Tel: 0800 0184 724 Helpline
Fax: 028 9332 4606
e-mail: info@the-ia.org.uk
Web: http://www.the-ia.org.uk
ia provides a visiting service and also supports individuals, including parents of children and young people, by email and by telephone.
Incontinence
Where there are structural, developmental or psychological difficulties, incontinence may arise.
Enuresis Resource & Information Centre
34 Old School House, Britannia Road, Kingswood Bristol BS15 8DB
Tel 0117 960 3060
Fax 0117 960 0401
e-mail: info@eric.org.uk
Web: http://www.eric.org.uk
Incontact
SATRA Innovation Park, Rockingham Road, Kettering, NN16 9JH
Tel: 01536 533255
e-mail: info@incontact.org
Web: http://www.incontact.org
Provides support and information to people with bladder and bowel problems and their carers.
Limb Abnormalities, Acquired and Congenital Limb Absence
STEPS
For contact details see Lower Limb Abnormalities
Steps covers lower limb abnormalities and has extensive information about all issues, including prosthetics, facing families of children with a lower limb abnormality.
Reach
For contact details see Upper Limb Abnormalities
Reach covers upper limb abnormalities and provides insurance cover for the 'good arm' of children over 2 years of age (UK only) as an automatic benefit of membership and has a wide range of information available.
Limbless Association
Rehabilitation Centre, Roehampton Lane, London SW15 5PR
Tel: 020 8788 1777
Fax: 020 8788 3444
e-mail: enquiries@limbless-association.org
Web: 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, carers and those already trying to come to terms with limb loss or deficiency.
Pain Management
Action for Sick Children
Web: http://www.actionforsickchildren.org/parents.html
Good information on injections and pain. Also covers other subjects allied to children going into hospital.
Paediatric Pain Profile (PPP)
Web: http://www.ppprofile.org.uk
e-mail: ahunt@uclan.ac.uk
Tel: 01772 895 148
The Paediatric Pain Profile is a pain assessment tool for children with severe and complex disbility. Pages on their website describe the development and testing of the tool. The PPP can be downloaded from their website.
Pain Concern
PO Box 13256, Haddington EH41 3YD
Tel: 01620 822572 (Mon-Fri, 9am-5pm; Fri, 6.30pm-7.30pm)
e-mail: info@painconcern.org.uk
Web: http://www.painconcern.org.uk
Provides information and support for pain sufferers and those who care for them. A selection of factsheets and leaflets is available. The listening-ear helpline provides an opportunity to talk to another pain sufferer.
The Pain Relief Foundation
Clinical Sciences Centre, University Hospital Aintree, Lower Lane, Liverpool L9 7AL
Tel: 0151 529 5820
Fax: 0151 529 5821
e-mail: secretary@painrelieffoundation.org.uk
Web: http://www.painrelieffoundation.org.uk
Information on chronic pain conditions. Send an A4 50p SAE plus £1.
British Pain Society
21 Portland Place, London W1B 1PY
Tel: 020 7631 8870
Fax: 020 7323 2015
e-mail: info@britishpainsociety.org
Web: http://www.britishpainsociety.org
Information booklet. Send an A4 SAE. A list of pain management clinics is also available.
Restricted Growth and Over Growth
Restricted Growth Association
For contact details see Restricted Growth
The Association has welfare and counselling services together with a regional contact network. It gives information about clothing, employment, mobility and home aids.
Child Growth Association
For contact details see Restricted Growth.
The Association supports and advises families of children and adults with restricted and over growth disorders. It has very good growth charts available.
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 child or adult breathes. It is necessary to keep the airway clear by sucking out the secretions which form.
ACT
For contact details see Tracheostomy.
Offers support and encouragement to families and contact with others where possible.
Transplants
NHS Blood and Transplants
Oak House, Reeds Crescent, Watford WD24 4QN
Tel: 01923 486800
Fax: 01923 486801
Web: http://www.nhsbt.nhs.uk
NHS Blood and Transplant (NHSBT) was established as a Special Health Authority in October 2005. Its remit is to provide a reliable, efficient supply of blood, organs, information and associated services through its three branches:
Give the gift of life. Join the NHS Organ Donor Register.
Organ Donor Line 0845 60 60 400
Web: http://www.uktransplant.org.uk/register
Right now more than 8,000 people in the UK need an organ transplant that could save or improve their life. But each year around 400 people die while waiting for a transplant.
If you want to help someone live after your death, sign up to the register now.
Urostomy and other urinary diversions
When the function of the bladder is affected by nerve damage or specific disorders such as Abdominal Exstrophies, Bladder Exstrophy, Spina Bifida, Hirschsprung Disease, Cancer or Multiple Sclerosis 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
18 Foxglove Avenue, Uttoxeter ST14 8UN
Tel: 0845 241 2159
Tel: 0870 770 7931
Fax: 0870 770 7932
e-mail: info.ua@classmail.co.uk
Web: http://www.uagbi.org
The Urostomy Association has Young Persons Advisors (Male and Female).
Ventilation
Breathe On
Knight Cottage, Sackmore Lane, Marnhull DT10 1PN
Tel: 01258 820951 (answer phone)
e-mail: victoria@breatheon.org.uk
Web: http://www.breatheon.org.uk
Supports the families of children on long term ventilation.
Visible Difference
There are a number 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
For contact details see Facial Difference
Let's Face It has built up an extensive resource of information for people for whom automobile accidents, burns, cancer or birth defects/syndrome have caused a facial difference. The organisation aims to offer friendship on a one to one basis, provide information about prosthetics and other aids and raise awareness of facial difference and issues facing individuals to the medical, nursing and allied health professions.
Facial and Body Difference
Changing Faces
For contact details see Facial Difference
Changing Faces provides information, support and advice to anyone with a disfigurement and their family. It has information and advice for employers to encourage equal opportunities in the workplace and for schools to promote awareness. It offers advice for health-care professionals in developing new models of health-care and build coping strategies and self-confidence for patients.
British Red Cross
44 Moorfields, London EC2Y 9AL
Tel: 0870 170 7000
Fax: 020 7562 2000
e-mail: information@redcross.org.uk
Web: 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 such as scarring, rosacea, vitiligo, tattoos, leg veins and other dermatological conditions. Services are provided through local branches, details available from UK office. The service only deals with prescribable camouflage products and a letter of recommendation goes to the service user's GP after consultation with a British Red Cross volunteer practitioner.The British Red Cross is a National Registered Charity No. 220949 established in 1870 as The British National Society for Aid to the Sick and Wounded
British Association of Skin Camouflage
PO Box 202, South Park Road, Macclesfield SK11 6FP
Tel: 01625 871129
e-mail: basc9@hotmail.com
Web: http://www.skin-camouflage.net
The British Association of Skin Camouflage promotes, support or further the remedial techniques of camouflage for the relief of those who need to be restored to confidence in a normal appearance and thereby to help improve their quality of life.
Cancerbackup
For contact details see Cancer
Cancerbackup has extensive information on its website about Hair Loss and Wigs and Prosthesis & equipment needed by individuals and families of children as a consequence of Cancer. Children and young people can access the Captain Chemo Website at Web: http://www.royalmarsden.org.uk/captchemo/adol_guide/hairloss.asp Further information is also available from local hospital based UKCCSG centres at 22 locations in the UK Web: http://www.ukccsg.org/public/about_us/introduction/centres.html Much information will be useful even if the cause for these services does not arise from Cancer.
Other sources of information
Institute of Child Health
Web: http://www.ich.ucl.ac.uk/factsheets
A wide range of factsheets providing information relating to disorders, procedures and hospitalisation.
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