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Useful Links

PLEASE NOTE: THE LINKS ON THIS PAGE ARE NOT PART OF PINNT'S WEBSITE AND PINNT CANNOT ACCEPT RESPONSIBILITY FOR THE ACCURACY OF THE INFORMATION THEY CONTAIN.

OUR CORPORATE MEMBERS AND SPONSORS OF OUR HOLIDAY GUIDELINES ARE:

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http://www.bapen.org.uk/

The British Association for Parenteral and Enteral Nutrition is a multi-disciplinary (doctors, nurses, dietitians, pharmacists and patients) organisation which aims to improve the nutritional treatment of all sufferers from illness who have become or are likely to become, malnourished and are unable to consume or absorb normal food in sufficient quantities to promote recovery.

The site includes a link to LITRE (Looking Into The Requirements for Equipment).  LITRE is a patient-led standing committee of BAPEN which aims to improve the quality of life for patients at home.


http://www.espen.org/

ESPEN is dedicated to all issues relevant to the field of clinical nutrition and metabolism and promotes:

• basic and clinical research

• basic and advanced education

• organization of consensus statements about clinical care and care quality control 

The aims of ESPEN are to encourage the rapid diffusion of knowledge and its application in the field of Parenteral and Enteral Nutrition or, more broadly, Clinical Nutrition and Metabolism.

ESPEN sponsors a journal and for which it assumes editorial, as distinct from publishing, responsibility.

It promotes experimental and clinical research, fosters high ethical standards of practice and investigation, and promotes contact between investigators and clinicians in related fields.


www.port-charity.org.uk

The Pseudo Obstruction Research Trust.

The aim of the charity is to fund research into C.I.P.S. and raise public and professional awareness into this serious and sometimes fatal illness.


http://www.oley.org/

The Oley Foundation is the American equivalent of PINNT.  Their newsletter contains relevant medical articles.


http://www.lmca.org.uk/

The Long-term Medical Conditions Alliance is the umbrella body for all national voluntary organisations working to meet the needs of people with long-term conditions.


http://www.aboveandbeyond.org.uk

Above and Beyond is a Bristol-based charity, which raises money to support hospitals within the United Bristol Healthcare NHS Trust. We hope that this could be a very useful resource to nutrition patients and carers in the Bristol area.


http://www.nacc.org.uk/

The National Association for Colitis and Crohn's Disease offers support and information to people of all ages who have Colitis or Crohn's disease.  The charity raises funds for vital medical research to identify the causes and improve treatment, and also works to increase awareness and understanding of these conditions.


http://www.digestivedisorders.org.uk/

The Digestive Diseases Foundation is the only national charity that covers the entire range of digestive disorders


http://www.the-ia.org.uk/

ia is a UK-registered charity whose primary aim is to help people who have to undergo surgery which involves the removal of their colon and the creation of either an ileostomy or an ileo-anal pouch.


http://www.bcass.org.uk/

The website of the British Colostomy Association, offering advice and support for people with a colostomy or about to undergo surgery for one.


http://www.cafamily.org.uk/

Contact-a-family is a UK-wide charity proving support, advice and information for families with disabled children.

Are you entitled to FREE PRESCRIPTIONS due to your medical condition?

Did you know that if you suffer from certain medical conditions you can apply for a medical exemption certificate which entitles you to free NHS prescriptions?

The conditions are:-

Permanent fistula (e.g. colostomy, ileostomy) requiring continuous surgical dressing or requiring an appliance.

Epilepsy that needs continuous anti-convulsive (anti-epileptic) treatment

Diabetes mellitus which is treated with medication and not just diet

Myxoedema or other conditions which require supplemental thyroid hormone

Hypoparathyroidism

Diabetes insipidus or other forms of hypopituitarism

Forms of hypoadrenalism (including Addison's disease) for which specific substitution therapy is essential

Myasthenia gravis

A continuing physical disability which means that the patient cannot go out without the help of another person. Temporary disabilities do not count even if they last for several months

If you are not sure if you have one of these conditions then please check with your doctor.

How do you apply for the exemption?

Ask your GP Practice for a Form FP92A 'Application for prescription charge exemption (medical)'. The application form needs to be completed by the patient and their doctor. Once this has been done, your GP Practice will send it off to the Prescription Pricing Authority. They will issue the patient with an exemption certificate, which will be posted to them.

The exemption will cover ALL NHS prescriptions. You need to take the exemption certificate to the pharmacy when you have your prescriptions dispensed. 


http://www.dwp.gov.uk/

The DWP (Department of Work and Pensions) website has benefits information, downloadable booklets about most benefits, and downloadable claim forms.  It also provides contact details of your local office.


http://www.citizensadvice.org.uk/     

The Citizens' Advice Bureau site provides basic information on benefits and most other legal matters, along with a list of local offices.


http://www.ukselfhelp.info/

Provides information on support groups.


Gut motility disorders including:

Hirschsprungs Disease

Intestinal Neuronal Dysplasia

Hollow Visceral Myopathy

Gastro-Oesphageal Reflux

lprior@compuserve.com


The hirschsprungs and motility disorders Support Network

http://www.hirschsprungs.info/index.html


Heart & Stroke Information Point websit

http://www.heartstroketayside.org.uk

The Heart & Stroke Information Point website provides reliable, up to date information for patients and carers affected by heart disease and/or stroke conditions. The project is funded by The Big Lottery and is being undertaken by NHS Tayside in conjunction with the University of Dundee.

The website has been developed in partnership with patient, carer and healthcare professional groups across Tayside and we also work with national organisations including Chest, Heart & Stroke Scotland. The website provides general information about heart disease and stroke conditions and also localised information about support groups in the Tayside area.


 

Stroke 

http://www.differentstrokes.co.uk/

http://www.stroke.org.uk/

http://www.speakability.org.uk/


Cancer

http://www.bowelcancer.org/

http://www.breastcancercare.org.uk/

http://www.bristolcancerhelp.org/

http://www.clic.org.uk/index01.htm

http://www.cancerbackup.org.uk/Home

http://www.ukselfhelp.info/cancerlaryngectomee/

http://www.cancerlink.org/

http://www.cancerkin.org.uk/

http://www.coloncancer.org.uk/

http://www.kcuk.org/

http://www.macmillan.org.uk/

http://www.mariecurie.org.uk/

http://www.nationalcanceralliance.co.uk/

http://www.opa.org.uk/

http://www.ovacome.org.uk/

http://www.prostate-cancer.org.uk/

http://www.wessexcancer.org/


Food intolerances/allergies

http://www.fabed.co.uk/ Families Affected By Eosinophilic Disorders (FABED)

http://www.actionagainstallergy.co.uk/

http://www.anaphylaxis.org.uk/

http://www.allergyuk.org/

http://www.allergy.org.uk/

http://www.all-allergy.co.uk/


Deep vein thrombosis 

http://www.bvf.org.uk/ British Vascular Association


Downs Syndrome 

http://www.dsa-uk.com/ Down's Syndrome Association

http://www.dhg.org.uk/ Down's Heart Group

The Clinic for Down's Children, Tel 020 7806 4000


Cerebral Palsy 

http://www.scope.org.uk/

http://www.cerebralpalsycare.co.uk/


Parkinsons 

http://www.parkinsons.org.uk/


Multiple Sclerosis 

http://www.mstrust.org.uk/

http://www.msrc.co.uk/

http://www.mssociety.org.uk/


Scleroderma 

http://www.raynauds.org.uk/


Alzheimers 

http://www.alzheimers.org.uk/

Hirschprungs 

See above


Tracheo-Oesophageal Fistula Support Group

http://www.tofs.org.uk/

Pain Concern

http://www.painconcern.org.uk/


OUR AIM IS PROVIDE A COMPREHENSIVE INFORMATION SERVICE.  PLEASE CONTACT US WITH DETAILS OF ANY SITE YOU THINK WOULD BENEFIT OTHERS ON ARTIFICAL NUTRITION.

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