Patients take the lead in raising awareness of the importance of ‘The Patient Voice’ During PINNT’S ‘Home Artificial Nutrition (HANs)’ Awareness Week 4-10 August 2014
Today: PINNT, the charity and patient support group for all adults and children managing ‘life on-line’ at home with artificial nutrition therapies, is launching its second Home Artificial Nutrition Week. With 50,000 people estimated to be reliant on artificial nutrition therapies at home at any one time, putting patients at the centre of this form of nutritional care, and strengthening their voice is the really important theme and drive behind the aims and ambition of the week.
Experience and research has shown that patients and healthcare professionals do not always have the same priorities when it comes to their home artificial nutrition (HAN) healthcare provision, which is often life-saving but life-changing in respect of day to day life. What may be key priorities for the clinician may not be the same for the individual living with HAN day after day. And it is this ‘gap’ that can often interfere with communication and ensuring the best patient care outcomes. Indeed earlier this year a jointly authored Report ‘Nutritional Care and the Patient Voice: Are we being listened to?’ published by BAPEN and PINNT with involvement and endorsement from nine other patient organisations, confirmed that patients and carers feel little progress has been made in delivering improved patient-centred care and worryingly some felt there had been a recent deterioration in care.
PINNT member, Jackie, who talks of her experiences as a person who has experienced total parenteral nutrition (TPN) due to a major car accident in which she suffered extensive abdominal damage has one wish “I wish medical professionals would treat me as a whole person instead of individual problems. At times many have not considered the effect of the treatment they’ve given me and how it impacts on other existing health conditions”.
As the UK-wide charity and support group committed to improving the daily lives of all adults and children receiving HAN therapies, PINNT continues to work tirelessly to partner with healthcare professional organisations, healthcare providers and other key associations to ensure that all HANs patients are put at the centre of care and fully involved in decisions. But there is much more to be done which is why the purpose of the Awareness Week is to garner even greater support from influential individuals and organisations to make real change.
PINNT has been working closely throughout the year with seven important health groups who have agreed to implement strategies to support patients and the work of PINNT and these will be revealed in the form of ‘Pledges’ during the Awareness Week. These pledges are designed to produce relevant resources for patients and carers along with ‘actions’ that will impact on the long-term care of patients. In addition PINNT is asking everyone to consider those who are reliant on artificial nutrition to sustain life. The very social pleasure of eating and drinking is not an option for many PINNT members. Members of PINNT often look very well but suffer with hidden illnesses, PINNT invite people to visit their website and find out more the patients they support. They also challenge healthcare professionals to be more informed about the people on the receiving end of the therapies they prescribed and partner with them to make a real difference to day-to-day life on HAN.
“There are many ways to support patients and PINNT are delighted to be in a position to influence and deliver, in collaboration with key partners, resources and pledges that should make a real difference to patients. These will include support promises, development of literature and others will have on-going longer term implications to ensure patients are always put at the centre of nutritional care,” commented Chair of PINNT, Carolyn Wheatley.
The first pledge to be revealed on Monday 4th August is from BAPEN (British Association of Parenteral and Enteral Nutrition).
Dr Tim Bowling, BAPEN President said, “BAPEN is delighted to support PINNT's awareness week. We are highly committed to improving nutritional care and to co-designing improvements with patients to improve patient safety. PINNT and BAPEN have recently published a joint report on the patient's voice and the importance of listening to patients when planning their nutritional care.
Our pledge takes this work to the next stage and demonstrates our commitment to action. We have written to the Government and NHS England to ask for their pledges and will be working through our regions and members to map pledges across the country. PINNTs awareness week is so timely with the recent launch of the NHS England 'Sign up to safety' campaign which recognises nutrition and hydration as major sources of severe harm in our health and social care system. This is an excellent opportunity to make significant improvements in nutritional care for patients.”
Each day a different pledge from each organisation will be revealed on PINNT’s website (www.pinnt.co.uk). Organisations that are supporting this awareness week include:
BAPEN, BSPGHAN, BPNG, NNNG, PENG, PINNT and BAPEN Medical.
PINNT are delighted to have other supporters who have signed up to HANs week. These can be seen on PINNT’s website (www.pinnt.co.uk).
PINNT membership is free to patients and associate members of the participating organisations. To support PINNT’s work visit www.pinnt.co.uk for information.
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.
- Nutritional Care and the Patient Voice - are we being listened to? can be downloaded here
- Malnutrition matters – a commitment to act guide can be downloaded here
Information About the Key Organisations Pledging Support
BAPEN is a charitable association that raises awareness of malnutrition and works to advance the nutritional care of patients and those at risk from malnutrition in the wider community. www.bapen.org.uk
The association is made up of influential professional and patient organisations, which work in collaboration to improve and deliver safe and effective nutritional care throughout the UK:
- BAPEN Medical is primarily aimed at doctors but is open to all those with an interest in clinical nutrition. Its aims are: Education and training of clinicians at all levels; to encourage research and development and to foster collaborations between members’ research groups; to foster inter-disciplinary links and collaboration between medical specialties; to foster multi-professional links and collaboration between health professionals. www.bapen.org.uk
- BAPEN regional reps are a multidisciplinary team of professionals working in the field of nutrition. Providing a local resource for education, training and support in England, Scotland, Wales and Northern Ireland, they can be contacted via the BAPEN website.
- The British Pharmaceutical Nutrition Group ((BPNG) is a specialist group for primarily pharmacists and scientists, but open to all with an interest in clinical nutrition. The group was founded in 1988 following growing concerns about the stability of parenteral nutrition feeds. BPNG has published position statements on ‘multichamber bags’, in-line filtration of PN and calcium phosphate stability. Education is now a focus for the group which runs multidisciplinary ‘fundamental parenteral nutrition’ and ‘advanced’ nutrition courses. Publications include the ‘Handbook for drug administration via enteral feeding tubes’ and a competency framework for pharmacists working within clinical nutrition. www.bpng.co.uk
- The British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) provides professional leadership and promotes standards of care for children with nutritional, gastrointestinal and hepatological disorders. Its membership includes consultants and specialist trainees in paediatric gastroenterology, hepatology and nutrition as well as specialist dietitians, nurses and nutrition pharmacists. The society supports research, training and education for members and the development of standards of care for children with nutritional disorders; it also gives advice and support to implement child-centred strategies to deliver nutrition assessment and nutrition support through the Nutrition & Intestinal Failure Working Group. www.bspghan.org.uk
- The National Nurses Nutrition Group (NNNG) The NNNG was established in 1986. It is a registered charity which aims to promote education and the nursing role in nutrition and related subjects for the nursing profession for the benefit of patients in hospital and community environments. Over recent years the focus of the group has widened to reflect the increasing profile of nutrition: from screening strategies and mealtimes to the complex nature of artificial feeding. www.nnng.org.uk
- The Parenteral and Enteral Nutrition Group (PENG) is a specialist group of the British Dietetic Association. The PENG strives to train, educate, support and represent dietitians working in oral, enteral and parenteral nutrition support in all care settings. The group acts as the professional voice on matters pertaining to nutritional support and is a founder group of BAPEN. Members are registered dietitians who aim to ensure that nutritional support for patients is safe and clinically effective both in hospital and at home. www.peng.org.uk
- PINNT is the UK support group for patients on home enteral or parenteral nutrition. Established over 25 years ago, PINNT has grown into a community that provides genuine understanding to help individuals and carers, deal with the many challenges faced on artificial feeding at home. They also work closely with healthcare professionals, suppliers and manufacturers in order to enhance the patient journey. The PINNT network provides a unique and united voice to campaign for a better, flexible and safer service. www.pinnt.com