PINNT launches ‘Quality of Life On-Line’ home artificial nutrition week
and invites healthcare professional organisations to work in closer partnership
PINNT (Patients on Intravenous and Naso-gastric Nutrition Therapy) launches today (5 August) the first ever UK awareness week on artificial nutrition (5-11 August 2013).
As the UK wide charity and support group committed to improving the daily lives of all adults and children receiving artificial nutrition (AN) therapies, PINNT is committed to improving awareness and understanding of those therapies, as well as patient experience and interaction with health and care services.
PINNT was prompted to run this Week now for two reasons:
- The NHS has declared its commitment to putting patients at the heart of all it does and to improving care by listening to and acting on patient feedback and involving them in treatment and care decisions.
- NICE published its Quality Standard of Nutrition Support for Adults in 2012, with Standards 4 and 5 setting out promises for patients with regard to training, support and regular review, placing responsibilities on professionals to deliver those promises.
Two new PINNT leaflets have been produced – one for professionals and one for patients – that spell out the promises made in the NICE Quality Standards so that patients are clear about what they should expect and professionals know what they should provide.
In advance of the Awareness Week, PINNT invited 5 health care professional groups most closely involved with their health therapy to respond to the NICE Quality Standards promises and the charity’s new leaflets and drive for meaningful partnership. Responses were received from British Intestinal Failure Alliance (BIFA), National Nurses Nutrition Group (NNNG), Parenteral and Enteral Nutrition Group (PENG dietitians), BAPEN and BAPEN Medical.
Richard Shawyer, Vice Chair of PINNT says: “The response from all these groups was encouraging and supportive. They all agreed to circulate our new leaflets to their membership in order to raise awareness of the NICE Quality Standards, with one organisation saying that these leaflets will help ‘keep healthcare professionals on their toes’. Two ideas which match PINNT’s ambitions and are achievable are the setting up of more patient and professional liaison groups at hospitals and the implementation of a national patient satisfaction survey. PINNT looks forward to discussing these ideas further together with responding to invitations to contribute more effectively to forthcoming meetings and conferences.”
Each day of the Awareness Week (Monday 5 to Sunday 11 August), quotes from the responses received from professional organisations are being uploaded to the PINNT website together with two new patient stories each day, accessible from the home page www.pinnt.com.
Further media information is available from Minerva at 01264-326427 or 07887-714957
Copies of the two PINNT leaflets are being sent with this release.
Notes to Editor
- PINNT – Patients on Intravenous Naso-gastric Nutrition Therapy – is a charity and patient support group founded 25 years ago by patients to provide mutual support to all those receiving artificial nutrition at home. Artificial nutrition therapies include parenteral nutrition (delivered via a line direct through the vein) and enteral nutrition via tube into the nose, stomach or bowel.
- Parenteral Nutrition (PN) is given via a dedicated catheter (CVC – central venous catheter) which is placed in a main vein. The tip of the catheter sits close to the heart.
- Enteral Nutrition (EN), tube feeding, is given via different types of tubes. Tubes can be placed down through the nose into the stomach or bowel, known as Nasoenteric Feeding and includes naso gastric (NG), naso duodenal and naso jejunal (NJ) feeding. Alternatively a tube can be placed directly through the skin into the stomach or bowel, known as Enterostomy Feeding, which includes percutaneous endoscopic gastrostomy (PEG) and percutaneous endoscopic jejunostomy (PEJ).
- Numbers of children and adults on artificial nutrition therapy (parenteral, enteral and supplemental feeding) in UK are estimated at around 50,000 in total at any one point in time, with around 5,000 on the most technical feeding. The best data is currently collected by the British Artificial Nutrition Survey (BANS) a sub-committee of BAPEN which is reliant on volunteer reporting centres.
- Artificial nutrition therapies for babies, children and adults are often life-saving therapies and are certainly life-enhancing but they are complex therapies requiring support for patients from healthcare professionals as well as PINNT and its network of experienced volunteers.